Janet's Blog

Any year I continue to suck air has to be cause for celebration. Or at least I certainly hope so.

I'm home, albeit with digestive difficulties (probably from the IV antibiotic). I also have swelly feet, legs and belly. But I'm extremely relieved I don't have to spend my birthday at the hospital.

I am 36 today and have been fêted for almost a week (if you don't count the early gift of the Amazon Kindle). My mom brought stuffed peppers and a Sweet Dreams Bakery cake (much like the one pictured) to the hospital last Sunday. Thursday she took Brian and me to Musashi for dinner, yesterday Brian finished hanging curtains for me and gave me the DVDs The Red Violin and Walk the Line. Today he took down the butt-ugly pool hall style light over the dining room table and is putting up my Ikea octopus light, "Hörby". Tonight he is taking me to a Red Wings (hockey) game. I'm not a hockey fan, but I'm excited and kind of hope there will be much violence.

Not that I have rage issues, or anything.

Labels: ascites, birthday, Brian, edema, hospital, mom

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Thursday I began to get the extreme chills which indicated (as back in April) that I probably had a high fever and should go to the emergency room.

I didn't want to go to the emergency room.

So I took ibuprofen, and by the next morning my fever was back down. I had a conference to go to Friday at which I was to participate in two presentations. In my car, waiting for Barbara to show up to carpool people to Lansing, I started having violent chills. I took my temperature and it was 102.4. I heaved myself into Barbara's car and eventually (between bouts of violent tooth-chattering) told people I was feeling cold and had a fever. "If I can't move my hands without jerking them," I told Joel, "you might have to move the mouse." Beth let me wear her knitted wool scarf.

During the opening remarks, Barbara got someone to find me a blanket. By noon my temperature was about 104. I eventually stumbled into the presentation room with Joel, and we gave a presentation on "Google Analytics in the Web Opac" I hope people found interesting. I might have babbled.

The next presentation didn't require me to talk much, so I sat in the front with the blanket.

On the way home, Barbara suggested I sit in the heated passenger seat. Why aren't all car seats heated? Sigh. I was able to drive myself home from the carpool meeting site and called the cancer center. The triage nurse spoke to one of the nurse practitioners (and very wisely did not put that particular person on the phone with me) who said, "Go to the ER."

So I ended up at the ER with an initial diagnosis (after chest ex-ray) of a small touch of pneumonia.

Thursday my mom brought birthday cake, stuffed peppers for dinner, and presents! Presents! Ah loves me some presents. I got a glass murano-style giraffe from the zoo, a handmade cashmere hat and sweater, a penguin trivot, and some other things.

But testing resumed, and a blood culture showed rampaging E coli. Lucky me, either way! I stayed in the hospital long enough to get another paracentesis (they wanted to check to be sure whether the infection is in my belly fluid or not). My belly got so incredibly bloated it was causing my ribcage to expand painfully.

Once the tap was done and they decided what antibiotic I needed, the discharge people planned to let me go with a styrofoam cooler full of antibiotics I can administer to myself. They will be sending a visiting nurse to make sure I have all the steps right. (This is good as I am not at all sure I have the steps right).

Freedom! Sort of...

Labels: Brian, E. coli, ER, hospital, paracentesis, pneumonia, work

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Saturday Brian, my mom and I went to the Detroit Zoo to feed the giraffes. Brian and I got there very early and lined up--we were worried when the large group of kids wearing matching shirts went in because there is a daily limit to the amount of tickets available for the Giraffe Encounter. Obviously, we were successful.

It was a lot of walking even though we took the train to the back of the zoo. I was ok later, but Brian had very sore feet!

Detroit Zoo Photos

Labels: Brian, detroit, mom, zoo

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Greetings. After not having posted for a while, I have a number of things to discuss. So pull up a chair, grab a beverage of your choice, and let's get going, shall we?

Vacations with Brian - This photo album includes pictures of our trip to New York to see Brian's brother and nieces and nephews. I wish we could have seen more of Scott and Charles, but it was great to spend time with the kids. We tried to go see Wall-E one day, but Charlotte was scared of the explosions, and there was a fire alarm at the movie theater. Instead we we all got together for lunch and then went to the non-fire-alarm end of the mall where there was a carousel. I was satisfied after one ride, but the kids wanted to go again, this time on one of the spinning cars that are like the teacups at Disney World. Olivia is pretty strong, and spun that thing like nobody's business. When they got off, they were staggering like little drunk people. All of the children seem inordinately fond of butter. This is what happens when you eat a mostly healthy diet. That which is usually forbidden becomes irresistibly alluring.

Later in the summer, Brian's parents took us to a minor league baseball game in Midland, Michigan. We got to sit in one of the luxury boxes and were treated to hot dogs, brownies, popcorn, and drinks. It was great fun, although the Great Lakes Loooooooons were defeated by the Iowa Kernels. (Brian and I went to a Tigers game, too, but forgot to bring the camera.)

My mom also generously took us to Stratford's annual Shakespeare Festival, at which they show more than just Shakespeare. We saw Hamlet, The Music Man, and a double-bill of Krapp's Last Tape and...I've forgotten the name of the O'Neill play--oh right: Hughie. We played pool (with a lower-case "p" that rhymes with "T" which stands for...Trouble!), ate swanky foods, and shopped (which I am sure Brian and John don't enjoy all that much).

Also included are some bonus pictures of Bronner's and a shot of me looking shorter than seems possible.

Martha's Vineyard - This is one of my favorite places in the world. I have gone every year (except 1998) for the last 11 years (and have the "Black Dog" t-shirts to prove it!). I get to go due to the generosity of my friend Sarah and her parents (who built the house we stay in and let their kids each have use of the house for a week out of the summer season--Sarah routinely picks the week of her birthday, which almost always involves perfect weather and frequently coincides with the Agricultural Fair). This year we got to see fireworks for Sarah's birthday. I finally bought one of those ribbon-on-a-stick things at the toy store--I frequently get in trouble for playing with the toys at the store and figured I should finally buy one of these things. We go to the yarn store, eat fabulous sandwiches at Humphrey's, drive all over the island, spend time at the beach, go see movies, and spend more than a little time watching movies and knitting. I wish we had busted out the Wii, though. I'd still like to try it.

On my way home, I waited in the airport at my gate next to a gaggle of women who had just been to a convention for Weight Watchers employees. They talked about points and whether or not they bothered using the "activity points" they were entitled to, running discussion groups, and the importance of drinking lots of water. The lady sitting next to me went to get some food and came back with a tuna salad sandwich. She then launched into an explanation of how she initially thought the turkey sandwich would be "better" until she read the label and saw the calories and fat content of each sandwich. The turkey apparently had cheese, mayo, AND pesto--making the tuna a more diet-friendly choice. She whipped out some kind of little device for calculating her points.

I felt very odd sitting there next to women who are obsessed with and employed by the business of losing weight. I keep getting told that I need to eat more because I shouldn't be losing any more weight. Lita doesn't care what I eat--ice cream, bacon, whatever--as long as I eat.

Summer is over, the students are back on campus, and I had some exciting new technology come into my life yesterday. For work I have a shiny new MacBook Pro--I am going to install VMware and then Windows XP so that I can check my web stuff in an array of browsers and platforms. Some of the work I do that looks great in Firefox for Mac doesn't look so great on IE for Windows. I won't have to switch between machines anymore to doublecheck. W00t!

Then when I got home, Brian was so excited about the fact that my birthday present had arrived, that he wanted to give it to me right away. I am very bad at insisting that he save my presents for my actual birthday (which is in October), so I agreed it would be delightful to open it immediately.

It was a box from Amazon containing...AN AMAZON KINDLE! Wheeeeeeeeeeee! I have lots of Amazon credit built up from my associates site (which I really need to update) and have already charged that bad boy up and acquired a few books. It can also store Word or HTML documents and can play mp3s and books in Audible format. I'm so excited! The screen looks awesome. I keep accidentally hitting the "next page" bar but speed-reading is an excellent skill to develop, right? Brian is the best. I also know who else is responsible; you know who you are, and you rock also. :)

The dread of my upcoming paracentesis is not quite enough to dampen my spirits today. Whereas I do get rather upset at the prospect of being jabbed in the belly with a ginormous needle like I am some kind of Capri Sun juice pouch, I have fun toys to come home to, Brian's supportive (and extremely comforting) presence, and the prospect of at least feeling better when the ordeal is over. This is not a procedure I will ever enjoy. Before the last one I had something of a hysterical melt-down and have permission to partake of an extra dose of the Xanax. My liver functions and tumor counts seem to be improving, so it's possible I might be able to have fewer of these taps--or at least spread them out more. I wish I didn't have to do them at all, but I suppose the alternative (exploding like that guy at the end of Monty Python's The Meaning of Life) isn't any better.

Labels: Brian, John, Lita, liver, Martha's Vineyard, mom, paracentesis, vacation

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Today I found out that a former boss (well, technically my boss's boss) passed away last Thursday. Dr. Hackney was the head of the Counseling department at Macomb Community College. I worked there in the summers while I was home from college. After a stint at the Learning Center, I went back to Counseling, where my job was to help new students get started, and help associate degree students figure out what classes they needed.

The Macomb Assistance Center was often a very fun place to be. Once I was helping a student on the phone when I looked up and noticed something odd...

"First you fill out the application, then you will need to take the--OH MY GOD!" My fellow Assistance Center technicians Robyn and Lori had glued tiny photocopies of David Duchovny's head to all of the push pins on my bulletin board.

Computing services on campus was not always concerned about securing desktop PCs, so at the prompting of Dr. Hackney's secretary, I installed a piece of software on his machine that replaced the regular system beeps and sounds with video and audio clips from Star Wars. The next time he came in, his computer greeted him with "Help me, Obi Wan Kenobi; you're my only hope."

Dr. Hackney was very proud of his Tickle-Me Elmo.

He was very kind and low key. He was the only African-American administrator on campus (at that time at any rate...I don't know what the situation is now), which I imagine was somewhat difficult. I respected him immensely.

I left in 1999, and Dr. Hackney retired in 2002. I hadn't seen him in years, then Brian and I ran into him at the radiation oncology department at the hospital this past February. He recognized me first and said hi. We talked a little bit, introduced spouses, and then lapsed into silence, because what do you really say when you're waiting to be bombarded with radiation for cancer?

Last Thursday I wasn't feeling all that well, but I met Robyn and Lori for dinner. I mentioned having seen Dr. Hackney at the hospital a few months ago, and we reminisced about him and about our days together in the same office.

That's the night he passed away. I can only offer my deepest condolences and sympathy to his family and loved ones.

Larry Heywood Hackney, Ph.D
1938-2008

Labels: Brian, Dr. Larry Hackney, liver, radiation

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Local Woman Finally Normal

At a body mass index (BMI) of 23.8, Janet Elkins has achieved a weight in the "normal" range. This has only happened once before in her lifetime. How was this remarkable milestone achieved? It was made possible through the miracle of having a needle jammed into a pocket of fluid in her belly and having greenish ooze sucked out by means of a catheter, a length of tubing, and special vacuum bottles. 2.4 liters were removed, for an approximate loss of 3.6 pounds in a single day.

The procedure, which Mrs. Elkins referred to as "uncomfortable and kind of gross," is also called a paracentesis.

"Normal" BMI is healthy, right?

Recent reports indicate that those with a BMI at the lower end of the "healthy" range, or 19.1, are at lower risk of breast cancer than people who weigh more. At such a low body weight, this would place Elkins in heroin chic territory, particularly since she has lost a great deal of muscle mass due to recent hospitalizations. The way to build muscle mass is by exercising and consuming calories high in protein.

For someone who already has cancer, the normal rules do not apply. Fatigue, lack of appetite, a swollen abdomen which makes consuming more than a few bites at a time problematic all contribute to making muscle-building extremely difficult.

Doctor's Orders

The last time Elkins managed to reach a BMI in the "normal" range, it was also not through conscientious diet and exercise. It was because anxiety and narcotic pain medications (prescribed for metastatic bone pain) were causing her to vomit uncontrollably. Doctors were concerned about her weight loss then, and are concerned about it now.

When asked what Elkins should be eating, her nurse practitioner said, "I don't care. Whatever sounds good." High-quality food is preferable, but in light of uncontrolled weight loss, even high-fat foods like ice cream, steak, potato salad, and peanut butter are fine. Protein and calories are of utmost importance right now.

Smoothies have been soundly rejected by the patient, as have most sweets. "Things just don't taste right," she says. "And when eating is no fun, it becomes a horrible chore. I know I need to try to eat more, but it's hard."

Coping Techniques

Elkins has decided the best approach would be to try to eat something small at least once per hour. She has also replaced skim milk with two percent milk. Whereas most sweets and starches are not palatable to her at the moment, she finds steak to be extremely satisfying. A recent trip to Longhorn will provide grazing materials for tomorrow. Her Grandmother's bacon-suffused potato salad was recently a hit and is a possibility for further snacking.

Diet sodas and beverages will be shelved in favor of higher-calorie fare. Mr. Elkins has procured a supply of mild-flavored string cheese that the patient has found to be tasty. And peanut butter sandwiches or peanut butter crackers will be a staple at work.

"I think it's kind of good," comments Elkins, "that I started out from a point of weighing more. If I were a naturally skinny person I'd be horrifically underweight by now. Normal rules of health just don't apply to somebody in my position. I'd like to be at a point where I can exercise and eat more healthy foods, but I don't have the strength to even hoist myself up from a kneeling position, and lower calorie foods are just too bulky for my bloated belly."

"I regret being as scrawny as I am even now," she goes on. "I used to have crazy strong legs. I could do leg-presses like nobody's business."

She looks wistful for a moment, then turns away.

Labels: Brian, food, Lita, paracentesis

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I'm not bent on world conquest to the degree that the Brain is, but I have the same pale noggin and bags under my eyes. I think that's as far as the comparison can really go (unless somebody wants to make a crack about my shortness of stature). Brain may have been experimented on and possibly gets lots of shots, but I'm pretty sure they don't have to give him little tiny mouse MRIs.

I got good news about my recent brain MRI: The scan shows no new lesions, and the existing ones are reduced in size. Brain mets do not automatically go away; once they're killed, they either can sit there, inert, for quite a while, or sometimes they get reabsorbed by the body and disposed of.

At my appointment today it was decided to delay my next paracentesis until Monday so as to not do it too early--Brian and I are leaving for New York to visit his brother Scott and the various nieces and nephews for the Fourth of July. I also found out my liver function numbers are improved, and that I would be getting infused today. I had to walk over to "Med Inn" which is actually a hotel in the hospital for out of town patients and family which has treatment areas that are semi-private and they had a strolling massage-giver offering foot or back or neck rubs or whatever. They don't do that at regular infusion! And regular infusion is always out of bagels.

Since the swelling in my brain is down and my cognitive function seems pretty much normal, I can set aside my fears I was going to end up incoherent and illogical as Brain's cohort, Pinky. I hope no more pesky lesions crop up.

"Pinky, are you pondering what I'm pondering?"

"I think so, Brain, but where are we going to find men's underpants that fit?"

Labels: brain metastases, brain scan, Brian, Gemzar, liver, MRI, paracentesis, vacation, Zometa

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"Ascites" is a term used to describe pockets of fluid buildup in the abdomen, usually as a result of an improperly functioning liver.

I've been losing weight due to my appetite issues, but my belly is huge and round. I must look like Tik-Tok of Oz. My arms are particularly scrawny. I've almost got bony shoulders, which seems bizarre. My parts are all supposed to be soft and squishy. My belly in particular should squoosh nicely, but it's all taut with fluid.

I've been getting fluid buildup in my legs and feet, but edema is something that rather suffuses the tissue and makes it sort of like a wet sponge. I deal with that by wearing my thigh-high compression stockings (which, by the end of the day, leave me with "muffin-tops" on both legs)--the black ones are particularly sexy.

Ascites are actually pockets of fluid that can be drained. Since my belly was sounding like a ripe watermelon when thumped, I had an appointment last Wednesday to get the stuff sucked out (paracentesis), and I was rather upset at the prospect of giant sucky needles. So I asked if taking a "happy pill" would be out of the question. It wasn't, so I showed up at the hospital with Brian and my friend, Xanax.

The technician or doctor or whatever she was first did an ultrasound to locate the most likely entry point, which was determined to be on my lower left side. Advising me to not look at any of the equipment, first they gave me a shot of a local anesthetic. The needle would go in a little bit, inject something numbing, go in a little more, inject more numbing stuff, etc. Then the next thing I knew, a plastic straw was sticking out of my belly, which they hooked up to some tubing and then they connected the tubing with a bottle that was empty and vacuum-sealed.

The bottle started to suck away and filled up with an unholy greenish liquid. A second bottle was hooked up, but the suction petered out after a bit. They thought perhaps if I tilted on my side, the liquid on my right side would slosh over and get picked up. No such luck, so they unhooked the bottle and started pulling out more fluid with a GIANT syringe.

It was two and a half liters, well short of the 5 they said was that day's potential maximum. Subsequent taps might take as much as 8 liters. Ack! I felt soooooooo much better that afternoon that Brian and I celebrated at Longhorn.

Alas, by Friday I was feeling bloaty again. I'm not as uncomfortable as I was before the procedure, but I've been scheduled for another on this Thursday. Friday I will finally have a brain scan (MRI).

In other news, my various counts are no worse than last week, some are slightly better, which will hopefully be the trend. My white blood cell counts were very low, however, and Dr. Hayes and Lita decided not to treat me with Gemzar today. The plan is to instead try an every-other-week schedule, hopefully giving my blood counts time to recover. (I neglected to bring up the subject of Neupogen, which is the devil and hurts like a mofo...if waiting a week will help my white blood cells recover, I'm not going to volunteer for stinging agony.)

Labels: ascites, Brian, Dr. Hayes, edema, Gemzar, Lita, liver, paracentesis, Xanax

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My appointments today ran rather longer than expected. The nutritionist gave me lots of sample protein supplement drinks and mixes, gave me a folder filled with nutrition information, suggested small, multiple meals per day (I think I'm going to have to make myself a schedule) and told me exactly how many calories and how much protein I should be getting to not lose any more weight.

It's a lot more than I expected.

She also gave me advice about dealing with the horrible taste in my mouth. Lemon things seem to be pretty good.

Of course, with the change in chemos, I might not have the same appetite problems, although I do see "loss of appetite" on the list of Gemzar side-effects. I shall try not to psych myself into having the side-effects that are listed. Brian is at the grocery store and asked me about whether I'd want ingredients to make one of the smoothies. I do not want smoothies...I wish I did; it would be fairly easy to put them together. Oh well.

I got very nervous when Dr. Hayes mentioned that 5% of people taking Gemzar develop pneumonia. How lucky am I feeling now?

Also, tomorrow I am to have an ultrasound, and if there is a pocket of liquid in my belly, they'll stick a big ol' giant needle into me, push in a plastic "straw" and let the fluid drain out like I'm a maple tree. Later this month I'm having a brain MRI to get a new "baseline" and check up on how my noggin is doing.

Busy month!

Labels: brain scan, Brian, Dr. Hayes, Gemzar, MRI, nutritionist, ultrasound, Xeloda

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Do you think they'll let me wear my hair like this to work?



Brian and I went to the Detroit Festival of the Arts last Saturday, and went to see the performance art group "Osadia." They do creative hair-sculpture onstage to techno versions of classical music. We saw them a few years ago and found them highly entertaining, so this time we made sure to get good seats.

When the performers take the stage, they select audience members. They communicate non-verbally, which can cause a little confusion if multiple people think they've been picked.

I got picked first! The performer wearing red was a man. He looked around the crowd for his first subject; people were raising their hands anxiously like Hermione Grainger in potions class. I tentative put up my hand and he pointed and nodded at me right away. When I whipped off my bandanna, displaying an obviously bald head, the crowd cheered. Peruse the photo album and you'll see a sequence of events leading to my ending up with a fabulous "hair" style and rad makeup. I had great fun the rest of the day. People came up to me telling me how great I looked, and we got stopped several times so people could take pictures.

Driving home was particularly funny, because I kept trying to get the other drivers' attention. It is amazing how many people just don't look around when they're driving. An older lady did notice, and looked at me disapprovingly. A woman maybe in her 20's saw me and tried conspicuously not to look my way or stare. And another guy was definitely checking out the bizarreness via his sideview mirror, but nobody else looked. (It was a long drive, too.)

Oh well. I have the pictures. And the memory of how much fun that day was.

Slight Medical Update

I went to see my general practitioner today, who was of the opinion--after thumping on my belly like it was a ripe watermelon--that I seem to have a lot of air in there, and that regular meals will help. I wear thigh-high compression stockings that look sort of normal in the morning, but then by the afternoon I have muffin-tops on both of my legs. Food is still very gross to me (except for the Longhorn steak my dad treated us to last night...I was going to link to their website, but music starts playing right away so I opted not to. It's http://www.longhornsteakhouse.com if you really want to go there and listen to the song) so I'm seeing a nutritionist on Tuesday. I went in for I.V. hydration last week and may do so again if I'm still feeling like a raisin in the sun...

I also went back to work last week, found out interesting things about my work this week and am wondering if it's too soon to go on vacation!

Labels: baldness, Brian, Dad, detroit, Dr. Collier, hair, nutritionist

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Only one in which there was no brilliant, cranky Head Doctor who would come up with the solution and heal me of my infirmities.

A couple of weeks ago, during a visit by my mom on Sunday, I got very cold. Teeth-chatteringly cold. After our card game was over and she went home, I went to bed and huddled under many blankets. Brian discovered that I actually had a pretty high fever. So he called the oncologist on call, who suggested taking some tylenol and watching my temperature, and if there was no improvement, come to the hospital in the morning.

The next morning there wasn't an improvement (although I felt immensely better), so my nurse practitioner told me to come in, have blood drawn, get a chest ex-ray, and then go up to "bedside" in the infusion area (a opposed to the area where the infusion chairs are), where they got all freaked out about my "shortness of breath" (with my stomach all bloated, of course my lungs can't fill up really well), so they did the test where they do your blood pressure lying down, then sitting, then standing. They did this several times. Of course my blood pressure is very low to begin with, but it's especially erratic since they have to use either my right forearm or my leg.

Their results were so alarming that they decided I needed a CT scan of my chest. This makes me cry, because it means insertion of an IV. They eventually get the thing inserted, and then it turns out that the only CT machine available is in the ER...when I get down to ER, the CT technicians look at my IV and say, "Oh no, that one's too small." Blarrrrrg. So I get to cry again as they stab me again in the arm. They made a mess of it, too, and got blood on my fuzzy "Snoop Dog" hat. It also turns out that I have developed an allergy to the iodine conrast, so I couldn't breathe for a short while after the test. They didn't believe me and thought I was just "freaking out."

So they take me back to "bedside," where my oncologist agrees that I should be admitted.

Sadly they could not admit me directly to a room, but I had to go through ER. So I sat in triage in ER for several hours. Then a room opened up in ER and I had an EKG, many blood tests (with blood taken both from my port and from my arm) The ER doctor came in and told me my CT scan showed a pulmonary embolism. Then, no it was actually a "chronic embolism" which means it was a blood clot that was surrounded by other tissue and had been there for a long time and wasn't doing any harm, but perhaps I should have a mesh thingy surgically implanted to keep blood clots from my legs from reaching any vital organs.

Then they finally admitted me to the hospital proper, and I was put into a double room with a diabetic woman who had been there a month and complained constantly.

I can't say I blame her.

So then the doctors decided I didn't have an embolism at all, and that my low blood pressure/shortness of breath might be pneumonia or some kind of viral or bacterial infection. So they started giving me crazy amounts of antibiotics, at which point I developed horrible digestive issues. They had to bring me a bedside commode. They thought maybe whatever infection I was dealing with was making me anemic, so they decided to give me a blood transfusion. (It turns out I am type A-positive, which I did not know before).

They kept coming to test my blood--they had to take blood both from my port, and from another spot in my arm (in case it was the port that was infected)--and every test they wanted to do they told me, "We'll have the results in three days." But you already TOOK blood for tests and it's been three days....where are those results? Grrrrr.

I developed a dry cough (they were giving me oxygen at night because I was having some trouble getting enough air), so the respiratory people got all excited and wanted to give me this test where they made me breathe albuterol through a tube and then after a few minutes of this, spit sputum into a cup for testing. Well, my cough was a DRY cough. They were never able to get a sample from me, although they tried twice.

The freaky thing is that they also made my roommate do the albuterol thing and try to spit into the little cup, and then when she got discharged (after a month, the poor lady), and then they did it to the next roommate I had. I wonder if there was something going around the hospital, or what.

After about seven days of misery and crappy food and trying (sometimes unsuccessfully) to make it to the commode, they sent a physical therapist, who brought me a walker, a theraband, and a little pedal thing that sits on the floor and is sort of like a thing that makes whatever chair you're in into a recumbent bicycle. Great. Thanks, now I get to have a walker again. And the theraband was for my arms. I took the walker and theraband home; I'm not sure if I was supposed to keep the pedal thing or not, but I decided it was stupid and the hospital PT was useless. (I'm now getting PT at home, and she actually gave me USEFUL exercises to do.)

They never did decide what I might be infected with...if it was bacterial, viral, side effects from Xeloda, or what. So I got discharged after about nine days, just in time to go to Brian's graduation, weaker than I have been in a long time, coughing, and wearing a diaper.

Luckily I am getting stronger. I'm still wearing a diaper, though (at least I am today)...and I've got a bedside commode (which I have not needed yet, thank goodness because I've been sleeping very deeply), a walker for very long walks, and my feet swell up like sausages. I ranted to my oncologist and expressed relief that all the tests at least confirmed that I do not have EBOLA. I don't think he appreciated my outrage, because of course they've got my best interests in mind and are concerned for my welfare.

I FELT BETTER BEFORE BEING HOSPITALIZED.

Grrrrr. I hope there WAS some kind of bug floating around my system that got killed, because I'm pissed off and hate having to try to rebuild my strength and deal with the cough and the digestive issues. OH, also food is now disgusting to me I think because of the medications I've been given (usually antibiotics do this) or maybe the Xeloda itself is messing up my appetite. I don't have any nausea, it's just that when I put food into my mouth, it tastes all gross and metallic and I lose interest in swallowing it. It's even worse when there's a distinctive texture. It's sort of like I'll chew a mouthful of food, and then suddenly I realize that I have this nasty blob of chewed food in my mouth that I can't quite bring myself to swallow, but you can't spit it out.

I bet House could figure it out.

Labels: Brian, CT scan, hospital, mom, physical therapy, Xeloda

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I hope nobody noticed. The package claims that they are "discreet" but they seemed awfully lumpy and crinkly to me. So I dug out a skirt that is rather too big and tried to wear tops that would cover up any unusual bulging.

Luckily, it rained. So my mom went and got herself a green Wayne State umbrella, and me a clear plastic "reusable" poncho. I was glad of the poncho because I figured it would disguise any crinkly noises.

My mom and I got there pretty early, and were herded to the walker-not-wheelchair area. Yes, the handicapped people were being segregated from each other. It rained off and on, but the array of colorful umbrellas was actually pretty festive. As were the escaped mylar balloons, which, when I first saw one, I was convinced was either a flying rubber raft or a UFO.

I've been ruined forever by science fiction.

We nearly sat through the entire ceremony, but lost fortitude as the last of the people were crossing the stage to get their faux rolled-up diplomas. They won't actually send the nice certificates until later. But it doesn't matter. I am so proud of Brian and of what he has accomplished.

Navigating the regulations of the LIS degree and having to negotiate with the head of the program to be allowed to continue (due to time issues), working full time, taking care of a sick wife who was hospitalized many times during his academic travails, and just managing to get the actual academic work done...I don't know that he believed he could do it...but I did. I know what kind of man he is, even if he isn't sure himself.

I am particularly haunted by a ghost who isn't mine. There is a person in Brian's past who chose to throw her own life away, who was so mired in despair that she couldn't imagine anyone else's success. She told him he would fail when he said he was going to Detroit to be in the LIS program.

This has tormented me. When Brian and I met, it was partly the fact that I was a librian and he was in library school that brought us together--we didn't actually have that much in common at the time.... When I got very sick the first time with my broken hip, it was his impulse to quit school, quit work, and do nothing but spend all day, every day, taking care of me.

I didn't want that. I wanted Brian to continue, to do what's best for him and to silence that voice that haunted me, that I never heard, that I was only ever told about afterwards.

"You won't succeed."

Wrong.

My Husband, Brian James Elkins, on the day of Saturday, May 3, 2008 did receive his Master's Degree in Library Information Science from Wayne State University in Detroit, Michigan, while his wife, Janet Lee Elkins sat in the audience whooping with joy, wearing plastic underpants.

This is Brian's accomplishment, not mine, but I feel vindicated and I don't mind telling that stupid ghostly voice: "toldja so."

Labels: Brian, depends, library, Wayne State

2 comments

My treatment is being resumed, starting tomorrow.

Xeloda it is. I had a minor meltdown in the exam room today at my appointment but after going through one of those mini-boxes of useless half-size tissues, I got the reasonably good news that my liver hasn't yet imploded and that I can begin doing the pills without having to also do an infusion of Gemzar at the same time.

I have the informational packets, I have the pills, I have another am/pm pill case thing to add to my array of am/pm/middle-of-the-day pill cases, and I am ready to go.

I am so relieved.

After that my Mom took me to the new JC Penney in Canton where I did retail therapy. I got some Urban Decay eye primer and draperies! The living room will have some color soon and I ordered thermals plus got some stuff for Brian's office. It remains to be seen how much energy I will have for putting the stuff up. I still have to put the valance up in the guest room and haven't gotten around to it yet.

Brian finds my obsession with the curtains bizarre, I'm sure, but window treatments are important.

Labels: Brian, Gemzar, liver, mom, Xeloda

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Loopy here from a "basal ganglia stellate procedure" to help knock out my post-herpetic neuralgia. I may have to do this several more times. Sadly, after the procedure today I can't really talk or swallow, so taking my mom to my favorite deli was great for her, but my sammy is in the fridge, uneaten. I hope Brian doesn't eat it.

Also, my goal is to be taking fewer medications, but the pain doctor wants to increase the Lyrica, which is one of the ones that has a drowsiness warning on the label. I'm never going to be able to drive again. Blargh.

Labels: Brian, lyrica, mom, shingles, Zingerman's

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I went to the clinic on Friday and got to speak with the nurse practitioner who is Lita's counterpart. I believe she tried to give me good information and assistance, but I don't think I will consent to speak with her again unless Lita has been hit by that mythical bus that's just aiming to kill everyone. I felt things were going fine until she asked me if I had ever had a conversation about ceasing treatment.

Huh? Why the would I be calling asking about my symptoms and trying like heck to get back on chemo if that were the case? Why would THIS be the time to be having such a discussion? I was very upset and later, extremely angry that she would say such a thing to me. She doesn't KNOW me. Perhaps she was attempting in some clumsy way to bring up the notion of advance directives, but I've already gone through that with other people and it's not her business. I don't know to whom I can complain about this, or maybe I should just let it go.

Anyway, after an early morning MRI on Saturday, I got a call from one of the doctors I saw initially about the brain mets that I should go back to the hospital immediately. I was able to go to the floor instead of being admitted to the ER, which streamlined things somewhat, but it did mean having to be in the hospital over night for who knows how long. The plan was to radiate my thoracic spine--the MRI showed that one of the two lesions on my spine had increased in size, and the one in the T9 area is poking into my spinal column, which may account for some of my recent symptoms (but not the shingles). This is seen as an immediate problem, since delaying action can result in, oh, say, paralysis.

Sigh.

I got a private room, which was kind of nice. I also had multiple radiation/neuro people come to my room to have me squeeze their hands, follow the light with my eyes, and have invasive procedures to test the muscle tone of an area one doesn't want to have evaluated multiple times unless one has that particular fetish.

I refused the third "evaluation."

Sleeping was also a problem as they have seen fit to up my decadron to 8mg a day. I finally saw the movie Brigadoon (I have a soft spot for Gene Kelly) and a number of shows on Animal Planet about some amazing dogs that have vastly improved the lives of their owners, including one lab puppy who kept running away from home to be with a lady who eventually had her breast cancer diagnosed after the dog became upset and was poking at her breast incessantly. Dogs have been trained to detect cancer cells by smell, but this dog just did it naturally.

I did get released on Easter; I was expecting to go to my mom's for dinner, but that just wasn't going to work out. Instead, after she arrived at the hospital only to find out that I had just been discharged, we all went back to Canton and Brian's parents showed up shortly afterwards.

I've had three radiation treatments so far; they've scheduled them all at 7am, which is hilarious. This time I don't have to wear a mask; they just have me up on the table. I will have ten treatments altogether, and it will be over April 2. I don't know how long I will have to recover from the radiation before they can resume the chemo. I really hope there are no more hurdles. My other things have to heal and we are all hoping I don't get some kind of inconvenient infection.

Labels: Brian, Decadron, hospital, Joyce, Lita, mom, MRI, radiation, Roger, shingles, spine

// posted by Janet Yanosko Elkins @ 3:45 PM

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Brian has been researching Monarch butterflies, and we've adopted little Jem, who is growing up so fast!


Eggs! You can also see pictures of Jem's mama and read a little bit about how the eggs are laid. Monarch butterflies always lay their eggs on milkweed.


Second photos: three days old. The egg has darkened, and little Jem decides it's time to breathe free.


Third photos: at six days, little Jem is growing up. A wasp recently menaced the little 'uns, but luckily the folks at livemonarch.com are looking after their charges well. :)

Monarch butterflies are amazing. When they migrate, it's not like birds--the butterflies who make it to the warmer destinations have never been there before; they do it as a species to survive, but nobody really knows how (and the destinations weren't even discovered until the 70's). When they go into their cocoons, it's not as if they retain their shape just slimming down and growing wings. No, they actually break down into a "cellular soup" and completely reform. Incredible.

Labels: Brian, butterfly, Jem, monarch

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I am slowly tapering of the decadron, which has been keeping me up at night and has made me extremely cranky during the day.

This is a relief.

My itchiness is gone; I have some dry skin where the shingles were, but that is much improved as well.

Yesterday we had a visit from a special home-program where my insurance will offer as little or as much home support as we deem necessary--this could be home nursing visits, occasional accompaniment to appointments, light help around the house, all-hours medical advice and assistance, and the social workers are helping to look into transportation options that might be a good idea for now. They were incredibly nice, and I'll be interested to see if I can actually think of stuff I'd like help with.

I like to be independent, so it's tough for me to think of things for people to come do, although if somebody wants to vacuum, I could totally get behind that!

We also went to a lawyer's office yesterday where we got help setting up some basic documents that everyone should have. This I don't like thinking about, but it's useful for people to have power of attorney and wills and living trusts and what not. I found the experience refreshingly non-smarmy, and it's good to have things arranged even if they're unpleasant to think about.

We also stopped at Zingerman's again--this time the potato salad was swiss and we got some excellent macaroni and cheese. The deli seems weird to find if you're not pedestrian, but we will make a heroic effort to take any guests there who come and visit. I swear to you, the food really is phenomenal.

Monday is my last radiation visit (for now, although the neuro-onc, Dr. Lisa Rodgers, did indicate she would speak to Dr. Hayman about whether two lesions in my spine needed to be addressed before they begin intruding with my spinal column).

Monday is also Brian and my second wedding anniversary. :D

We both failed to believe when we got married that I would get to this point. I am so very happy to be wrong. Celebration, alas, will have to wait for a day Brian is not doing his practicum at Plymouth Public Library. It's his last semester in the LIS program at Wayne State, and I'm so very proud of what he's accomplished.

We will celebrate Wednesday, I think.

We also totally forgot about Baxter's birthday on the 21st, but he'll be getting a nice, juicy bone on Sunday so maybe he won't mind.

Labels: anniversary, Baxter, Brian, Decadron, Dr. Hayes, Dr. Lisa Rodgers, insurance, lawyer, library, Plymouth Public, shingles, Wayne State, WBR, wedding, Zingerman's

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Earlier today (I still insist it's "Tuesday" because I have not yet slept through the night to wake up on Wednesday...ignore the time stamp behind the curtain, people) I went out to walk Baxter.

I was feeling pretty good and had just completed an excellent day with my mom doing some retail therapy to get supplies for knitting some awesome stuff. I tripped, and after stumbling a few feet, totally unable to get my toes back under me, I went over like old-growth timber. I actually made an effort to land not on my hands and knees, but to distribute my weight. I feel pretty fortunate that I was wearing a very cushiony full coat and thick mittens.

I scraped my knee, slapped my left hand on the ground just too hard, ruined my boot, and was very frightened (the last time I fell I broke my hip and was in agony for months afterwards). As I lay there, stunned, Baxter tried to help me by licking my face and a lady in an SUV pulled up to ask if I were ok. It takes me a while to get up from the ground because my legs are quite weak, but I finally staggered to my feet and offered her a "thumbs up" and said I was fine.

My hands have been shaking.

The troubling things are these: the walkway was totally dry. What if I fell because my brain seized, and not because I actually tripped? What if it happens again? What if the falling jarred my brain in some way and moved my lesions around? I have appointments with various brain-people this week; I need to be sure to tell them about the incident.

Brian is now very worried and keeps asking if I "broke" something.

At least now I have an opportunity to use one of my bacon bandaids.

Labels: Baxter, Brian, mom

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Shingles, which has me crabby.

Talk about insult to injury--I've been almost unreasonably optimistic and chipper since regaining my ability to communicate. I started noticing a couple of blisterlike red spots on my neck a few days ago and thought perhaps it was a reaction to the radiation. They were uncomfortable, so I put lotion on them. Today they had doubled in number. They are irritated when anything touches them, they itch, and moving my head makes the skin stretch and become more uncomfortable.

This morning I was told three times that lotion can intensify the beams and make it worse, so it was really my fault.

The techs went to get the nurse, who went to get Dr. Hayman, who decided it might be shingles and went to get a physician's assistant, who concurred but went to call the department of dermatology to have me see them today.

The doctorlet at the department of dermatology decided it was shingles, but went to get one of the supervising doctors, who agreed completely. They then asked me if it would be ok for the medical students to come and look. I said "ok," not realizing there would be about ten of them, a few of whom wanted to poke and prod. (I hope they've already had chicken-pox.) Then I had one of the blisters scraped, and under a microscope they detected a viral load, so I now get to take--in addition to the stuff I was given for the brain thing--the most enormous dark blue pills I have ever seen in my life. Dermatology is doing follow-up tests, as well.

At least Dr. Hayman told me it wasn't related to the radiation per se (I wonder if the steroid is suppressing my immune system) since it is directed at my brain and not at my neck/chest area. What, am I under stress or something?

The good news about today is that Brian and I went to Zingerman's in Ann Arbor for some really excellent sandwiches and baked goods. I now know where to get gelato, too. Their foods all rock, and you might want to check them out. We also managed to get out of a ticket possibly by having a hospital Radiation Oncology tag hanging from the rear-view mirror.

Labels: brain metastases, Brian, Decadron, dermatologist, doctorlets, Dr. Hayman, radiation, shingles, whole-brain radiation

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Sunday I was afflicted with aphasia.

I had posted to a bulletin board and was flipping back and forth with Brian between Alias, Puppy Bowl IV, and the Superbowl. I was also trying to begin knitting a hat, and started having trouble counting my cast-on stitches.

I suddenly felt very stupid. In addition to actually having problems counting, I couldn't remember how to finish casting on. Then I couldn't figure out how to start knitting the round.

Then I got tired of watching Alias, so I tried to tell Brian that he could watch the Superbowl, since we had already seen most of a showing of Puppy Bowl.

The words wouldn't come out.

I got frustrated, Brian got frustrated with me, so I went upstairs to take a bath. When Brian tried to ask me what was wrong, I really couldn't explain or do anything much more than cry. I could pretty much only say "yes," "no," and "oh Lord." So he dialed the on-call oncologist's number, and we were told to go to the emergency room at U of M, where they tried to ask me dizzying questions I couldn't answer, and gave me various scans, which indicated positive for brain metastases.

I was admitted and have so far been through three whole-brain radiation treatments. I will undergo fourteen altogether.

What really helped me recover speech and thinking (I couldn't remember properly the days of the week or months of the year--I couldn't remember our dog's name; I couldn't spell "Elkins" or "Yanosko") was a tiny steroid pill. I have been evaluated by a speech therapist, who believes I am doing just fine. The brain radiation might cause some temporary loss of memory or cognition, but it may be possible to increase the steroid. I have also heard a lot of positive stories about people being successfully treated for brain mets so I am very hopeful.

It was terribly frightening, but we will deal with this.

For now I feel like I've had the brain helmet put on and could operate on Spock if I needed to.

Labels: aphasia, brain metastases, brain scan, Brian, CT scan, Decadron, MRI, star trek, WBR, whole-brain radiation

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Ok, so I was wrong about the doom and gloom and my chemo seems to be doing what it's supposed to. My tumor markers are holding steady. My scans seem to indicate that my bones are mostly stable (the bone scan shows possible increased "uptake" but the scan itself doesn't show the disease, it shows the disease being attacked--they call this a "flare effect" and is not cause for panic) and the tumors in my liver are reduced both in size and number (one went from 7cm to 4.5cm). I have some tiny spots in my lungs that don't appear to be doing anything, and there may or may not be some pleural thickening--the CT slices do not necessarily exactly line up from scan to scan, which is possibly why sometimes the couple of lung spots show up and sometimes they don't.

The Mini-Doom

The puzzling thing is why, given the reduction in size and number of my liver blobs, are my liver function tests not improved? The analysis states that my liver is irregular in shape, possibly due to carrying around multiple blobs of unholy cell mutantage, or it could be consistent with cirrhosis.

Huh?

Also, my spleen is about three times bigger than it should be, which would not be inconsistent with a liver that's having a tough time. No wonder I feel bloaty. I asked Dr. Hayes, "How big should my spleen BE?" He held up his fist to demonstrate. My spleen is currently 14cm, so I'm walking around with the equivalent of having eaten two large apples at all times in my belly, not to mention the extra mass in my liver. They are testing to rule out hepatitis. If it's not that, I don't know what else they can do. Maybe there's a crucial blockage somewhere. They might refer me to a liver specialist.

Brian and I went to a lecture last night about treating cancer that has metastasized to the liver, and I left feeling very bummed because I have too much cancer for any of the treatments to be considered viable. What else is a liver specialist going to be able to do for me?

The Annoyance

Also, no news on the back pain. I am to try taking ibuprofen and to avoid hopping on the trapeze.

Finally, the morning ickiness is probably due to GERD and Lita says I can increase my prilosec and/or keep soda crackers to pop in the morning if I'm feeling not quite right.

Labels: bone scan, Brian, CT scan, Dr. Hayes, Lita, liver, lungs, spleen

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We are in the process of re-doing the kitchen. Not in a big way, mind you. It is small and we can't afford new appliances or cupboards or countertops or floors. I tried to fix up my kitchen at my Westland apartment by replacing the knobs on the cabinet doors (what kind of an idiot uses a filigree patterned knob in the kitchen?!); the knobs were so expensive that when Brian found us a new apartment without stairs, I repeatedly insisted that he put the original knobs back and bring my new ones with us. Sadly, the Canton apartment didn't need knobs, and this kitchen uses handles instead. The solution this time is to paint.

Anyway, we have removed the wallpaper. Today I spackled holes and started some sanding. Sanding is a great way to find all of your wall imperfections. I have also been spackling grooves and dents. Then I figured I'd spackle the holes in the living room left by the plastic appliances which once held the tie-backs for the drapes. I need to replace those drapes at some point, but for now I'll pull out the plastic wall studs and spackle the holes.

In spackling the tie-back holes, I had to get up on the sofa and saw some other holes behind the Christmas tree above my lovely framed butterflies. I feel a little bad about having such beautiful corpses in my living room as décor, but they really look nice and are some of Brian's favorite pictures of mine. He doesn't like a lot of my pieces of "stuff" but he likes those. They can't be hung next to wall holes. My eye fell upon the black hooks on the ceiling, which presumably once held a lamp with a swag chain or something. "Maybe I could remove those hooks and spackle the holes," I said.

"You should wait until the tree is down first," said Brian. I think he's worried I'll try to stand on the arm of the sofa or make him do it.

Since much of the spackle in the kitchen had dried by the time I found the other holes to fill, I began sanding and layering more spackle. And sanding more. And now instead of filling holes, I am trying to smooth down where previous spackle had been applied by some homeowner or carpenter of years past. I think I can get the walls smoother. My eagle eye is poring over minute flaws. I can't actually sand anymore because I can't remember where the spackle is dry and where it's new. Maybe I should get the ladder out and start to try smoothing the wall above the cabinets. In at least one corner I think the cabinet doors will have to be removed so that the sanding blocks can appropriately smooth a corner that consists of one inch of wall space on each side of the corner's edge.

How much sanding should I do behind the stove? On the wall next to the refrigerator? Will it drive me crazy to have unsmoothed walls above or next to appliances? Do I need wall perfection?

Probably not, but I can't stop looking for invisible holes, dents, and dings.

Labels: Brian, condominium, paint, wallpaper, Westland

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Nothing else is ready, but at least there will be food when people come to visit.

Brian and I have invited some family to come and spend Christmas with us, so his parents are coming, his brother is driving up, and my mom is coming over for Christmas dinner. I need to finish making cookies (I've jettisoned the bell cookies from my menu and will probably forgo the crispy rice treats; I've made the cookie candies, but they need to be covered with fudge and I haven't made thumbprint or chocolate chip cookies yet...not like people desperately need cookies, but I LIKE them and want to do it)--I have to bake a pie, and the actual dinner will need to be prepared. I'm confident the turkey will thaw in time, although I'm pretty sure that right now it's a turkeycicle. If we have to, we can eat cereal, mixed nuts, or the chestnuts and eggnog I've asked my mom to bring over.

The problem is the other stuff. I only assembled and lit the tree today; I meant to do it earlier in the week, but I pulled a muscle in my back and have to do things in short spurts. I started physical therapy (again) this week, but it's for my hips/legs, not my back. Tension is not helping. The tree isn't even decorated with anything yet except six tassels and a tree skirt right now. I'm sure Brian would be happy to help do it, but I'm too particular. All the decoration boxes are still upstairs and need to disappear before people arrive.

Nothing is wrapped.

We also don't have quite enough seating in the living room, the guest rooms need to be cleared out (which Brian has been making a heroic effort to do), the bathrooms have to be cleaned, we desperately need to buy toilet paper and I have only a vague idea of when people are coming over.

I also volunteered to play the flute part of a flute/organ duo at my mom's church for midnight mass. Why? I haven't played at Christmas in three years because I got braces and wasn't really well enough to in any case. Why am I doing it now? I sound rusty and twisting my back into proper flute-playing position is not helping my muscular distress. I hope I don't suck in front of Brian's family.

I have a CT scan, infusion, and physical therapy the day after Christmas, but I don't have to worry about that yet. This year the holiday is going to be great. :)

Labels: Brian, chocolate, Christmas, Christmas tree, cooking, CT scan, flute, Joyce, mom, Roger, Todd

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The tree is not actually up yet. I need to acquire new strings of lights before I can decorate the thing.

I also have to put up the wreaths and will need to employ Brian to help with some window festoonery. I have some additional items I would like to put in the kitchen, but since we are planning to strip the butt-ugly paisley wallpaper and paint over the holiday break, it might not be a good idea to totally deck that room out.

On a related note, Brian observed that our ladder, the one which looks rather like the ladder sitting against the wall in the new neighbor's garage space, was missing. We are going to need that ladder for the aforementioned stripping and painting. Brian chose a moment during which my butt was about to be kicked by Ursula the Sea Witch in Kingdom Hearts to inform me of the wayward ladder, and so I was not all that helpful or cooperative at the time. Once my game was saved, I double checked the basement, fruitlessly as it turns out. Brian says he remembers specifically putting the ladder in the garage behind the shovels.

Is there a good way to ask a neighbor if they've stolen your ladder?

Today I checked the ladder against the wall for telltale paint spatters. Paint that exactly matches the blue of Brian's office and the pine needle green of our bedroom was clearly evident. I moved the ladder over to our parking space.

We'll see what happens next.

Labels: Brian, Christmas, Christmas tree, condominium, neighbor

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I don't actually have anything groundbreaking to report, except that I spend far too much time doing silly things with PhotoShop for this blog.

I don't know what my marker counts were last Tuesday, as I tend to not show up for the blood draw as early as I am supposed to, and the reports are never ready by the time I have my appointment. Of course I sat at the hospital for several hours waiting for my actual infusion (it always takes forever at Ann Arbor...I don't really know why), but the reports weren't ready when the nurse gave me a copy of the labs. Go figure.

Since I feel great and my liver function looks good, my December will not be wrecked with scans.

I need to start decorating for Christmas soon. Brian has no idea what he is in for, never having seen the results of a total Janet festoon-spree. I need to box up the trinkets that are currently laid out so that I can put out my penguins, snowglobes, candles, Star Wars Hallmark ornaments, stockings, Breyer holiday horses, more penguins, snowmen, and the actual el-fake-O tree itself. I need new lights for the tree since the lights went wonky last year and the top half refused to stay lit.

I hope the condo doesn't burn down.

I also have Christmas cookie jars, salt and pepper shakers, and special dishes and glasses I will start putting into the cabinet. I've got wreaths, fiber optic things, angels, and have even been known to wrap my framed pictures with wrapping paper and bows for the season.

Feel free to come on over; if I manage to bake cookies this year, you're welcome to have some.

Labels: Brian, Christmas, Christmas tree, liver, tumor marker

1 comments

I have noticed a strange phenomenon of late. I'm not sure it's more than my imagination, but I seem to have five o'clock shadow on my head.

I have not gone all cue-ball from any of my treatments and have in fact been periodically shaving my head. I have not had enough hair since February to look like anything other than an unfortunate nuclear reactor meltdown victim (or perhaps a moldy cantaloupe) and removing the fuzz has been the best way to deal with it. This time it seems different, though. I think there's more hair since switching chemotherapies. Maybe my follicles have as much vim and vigor as I do (I have so much decadron-induced vim that I'm posting to my blog in the stupid wee hours of the morning). The shadow on my head is very fine and soft, and there may not be an actual full head's worth of hair, but maybe I'll get enough to do a comb-over.

This evening Brian checked my nostrils with a penlight (I was complaining about my lack of nose hair as I reached for some yarn in a bag on the floor--my nose totally dripped on my hand) and commented that there seem to be some short ones in there. Maybe they're new, too. What I thought was my last strand of eyebrow gave up the ghost two weeks ago, but the other day I realized there are about eight more little hairs to take its place.

My wigs are very pretty and mostly convincing (the only one I'm skeptical of is the blonde one, but people who don't know me well are always raving about my "highlights" and don't notice anything amiss), but it does get tiresome to wear them. The convenience does not entirely negate the itchiness, heat, and worry that a vigorous sneeze could dislodge something at the most inopportune moment. Mousy fuzz of indeterminate color would be a welcome change.

Labels: baldness, Brian, chemo, Decadron, eyebrows, hair, wigs

1 comments

We had a visit with Lita today. Dr. Hayes is often traveling, accepting awards and presenting papers and what not, so I don't actually see him that frequently. It's the price to be paid for having a rock-star oncologist (and by that I mean a very renowned expert in the field of breast cancer), but Lita can handle things just fine.

I'm feeling great, aside from a few residual digestive issues, which may be lingering aftereffects from the Avastin, so I should be mindful but not paranoid. I have no pain anywhere, which is pretty astonishing in light of where I was two years ago.

The EKG I had recently showed that my heart is better than normal. Even if I were to suffer some loss of function from the Adriamycin, it would do just fine. There is a lifetime limit on Adriamycin because it does cause heart damage, but according to Lita, if it does well and keeps me stable, it may be possible to take "heart protecting" drugs to be able to prolong its use.

She also said that I was looking great, and wanted to know what was different. Had I done my eyebrows differently, or something? I said that I've been wearing the blonde wig a lot, and today's was brown. I didn't mention (although this could also be a factor) that I've lost about ten pounds and am nearly in the weight range that was "normal" for me--without having to exert special effort--when I was healthy. I dunno. I just FEEL better. I've been chipper and snarky (to Brian's chagrin, no doubt).

We walked in the door today after coming home from infusion just in time to answer Lita's phone call: she had my lab results which weren't available at the appointment. My CA15.something-or-other test shows that my tumor markers have dropped about forty points. The CEA test (also for tumor markers) blipped up a little bit, but it is Lita's opinion that the CA15 is more specific to breast cancer and therefore more important. I'm pretty happy with that. She also said my liver function was "much improved," which is pretty groovy.

November 5 was the four-year anniversary of my mastectomy. October 30 was the two-year anniversary of being diagnosed with metastatic disease. This could be a depressing time of year if I wasn't feeling so terrific. I got good news, I got my energy back. I'm bald and gimpy, but you can't have everything.

Labels: Adriamycin, Avastin, baldness, Brian, Dr. Hayes, Lita, liver, tumor marker, wigs

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The Food Network and Bravo's 'Top Chef' have created a monster.

Last night I successfully made wild mushroom and (not wild) parmesan risotto, adapting this recipe for my own needs*. It was acclaimed by all to be excellent, even without an additional protein. (I figured you don't always have to serve fish sticks with your macaroni and cheese, why should risotto be any different?) It did not turn out mushy, or goopy, or drippy, or slimy. The rice was firm, without being undercooked. The parmesan was just enough and not overpowering. The mushrooms were delicious; I used a variety. Some of the dried mushrooms were a wee bit chewy--I don't remember what they were called, but one kind was a wonky shape that just didn't reconstitute all that quickly. Oh well. I added the mushroom soakin' water to the risotto as a supplement to the chicken broth, which made the dish a little more "earthy."

Man, it took a lotta broth. The leftovers weigh about five pounds.

I would definitely make this dish again. I'd put on more comfortable shoes or sit in front of the stove on a stool or something, though. My feet started to hurt. I loved it as a main dish, but Brian, being a meat-n-potatoes guy, would probably like it as a side dish better. Either way, it is incredibly tasty. I bet it was better than Howie's risotto.


*I omitted the wine, forgot the bay leaves, and didn't have any thyme or parsley. I also don't make it a habit to have truffle oil on hand--and I think my risotto was plenty fungus-y without it.

Labels: Brian, food

2 comments

Since switching from Abraxane to Adriamycin, I have had more energy. Sure, the digestive issues have been bad, but eliminating one of the anti-nausea medications helped (we replaced the intravenous Aloxi with Zofran pills that can be taken as-needed) and I think I have it under control.

I walk faster. I noticed it the other day when I was heading down the back hallway at work. For months I've been sort of shambling around like one of the extras in Shaun of the Dead--and now I'm almost walking normally. I tilt to the side because my legs are different lengths, but concentrating a little keeps me from bumping into walls.

I have grocery shopped and cooked meals. Brian is amazed. Shrimp boil and crabcakes. Stuffed peppers. Black bean soup. Chicken or bean enchiladas. I'm actually planning to make risotto this weekend, so help me.

It doesn't stop there: I've been hanging pictures on the walls, assembling electronics, clearing clutter, sorting mail, straightening bathrooms, and catching up on some reading. I've been very talkative and have not felt the need to go to sleep early. What is with this crazy activity level? Is this how I was when I was "normal"?

I feel great.

I sure hope the new chemotherapy drug is actually working. It would suck to feel so terrific only to have to switch immediately to something else.

Labels: Abraxane, Adriamycin, Brian, chemo

3 comments

Today I feel like my own brain has been swiped.

I needed to have an MRI of my lower spine. In light of one of my complaints to Lita, she consulted with Dr. Hayes and wondered if there might be irritation of the nerve bundles in my lower spine, which has quite a bit of metastatic damage. Apparently, "irritated nerve bundles" can cause wacky symptoms that don't seem to have anything to do with the back. So U of M scheduled me for an MRI on October 10.

At 2:40 a.m.

That is not a typo.

Brian and I slogged out of bed and to the car at 1:45ish, and we got there slightly before 2:30. We weren't sure if we were supposed to park in the structure or use the ER parking valet, or what. We parked in what is the most poorly arranged parking structure ever, and then walked the loooong walk to the east elevators.

Having an MRI involves contrast dye, which the technician said was water soluble. I asked if they could inject it through a port, since it wasn't iodine contrast. "Yes," she said, "Is your port accessed? I don't have a nurse here at night so we can't access ports."

Great. So because of the asinine scheduling, I had to endure being stabbed three times, once in the crook of the arm (vein was too deep) and twice in the leathery scar-laden veins on my hand. People always think my hand veins are going to be good. They are mistaken.

We got home at five. I got up at eight to come to work. I am cranky and disoriented; a bad combination. I have bags.

Grrr.

Labels: Brian, Dr. Hayes, hospital, injection, Lita, MRI, port

3 comments

Turn away (once again), ye who are squeamish regarding digestive issues.

In light of my previous rear-endal discomfort, doctors have prescribed for me stool-softeners and have recommended drinking tons of water.

I am not, and have never been, a big water drinker. I am not a big drinker of any kind of liquid--with the exception of Longhorn Steakhouse's strawberry lemonade, which for some reason makes me suck it down like there's no tomorrow (I think there's crack in it). Realistically, I can not go to Longhorn to get the appropriate liquids. I just can't drink what I am supposed to. Also, for the past year, I have not required, um, "softening." I've stockpiled an emergency reserve of Immodium, instead.

In fact, I took some generic equivalent for Immodium this past Monday so that I could sleep without fear.

Then Tuesday came, and I went for Adriamycin. I was thrilled to have no nausea, and ate what I wanted.

Then Wednesday came, then Thursday. By Thursday night I was feeling uncomfortably full and heartburn-y. Friday I woke up, feeling swollen to at least twice my normal size and as if the alien were about to burst from my stomach any moment.

I had to call in "constipated" to work. Luckily they do not ask me why I am calling in, unless it's an absence long enough to require a doctor's note.

So I tried those softeners. I tried to drink liquids, but there was barely enough room in my torso for my lungs to wiggle sideways and get a tiny amount of air; I couldn't be expected to chug any number of eight-ounce glasses. That's just crazy talk. I sipped teaspoonfulls here and there. I tried softeners with senna, a "gentle" vegetable laxative. The net result of this was further bloating with stomach cramps.

Over the weekend I continued trying these mild therapies, continued trying to suck down more than four ounces of liquid in a day, and got very, very hungry, which only made my stomach discomfort worse.

Bloated AND starving! That's just ridiculous.

To make matters worse, Brian has been dealing with a cold, and I didn't want to be exposed, so I pretty much holed up all weekend, which got very depressing.

Yesterday some pellets did start coming out, which is better than nothing, but insufficient. There's nothing quite so demoralizing as straining for what seems like hours only to have three or four tiny pellets plip into the bowl as a result. I needed something more effective.

Since I was released from my month-long vacation at the hospital with any number of frightening narcotics, I also happen to have some bottles of fizzy magnesium citrate. For anyone who has not experienced magnesium citrate, I am telling you now that you do not want to. The only more brutal treatment of one's bowels I can think of relates to the method by which King Edward II of England was executed at Berkeley Castle.

I kept regarding the bottle. It kept regarding me. "Pleasant cherry taste." I most certainly do NOT believe the dosage. This morning I emailed Lita and asked for her advice. She called back and recommended going with milk of magnesia instead, because the magnesium citrate is quite strong. If I did have to go there, maybe try just a spoonful at a time.

Luckily, I found a bottle of milk of magnesia in the cupboard and cheerfully took the maximum dose of that instead. About two hours later I wasn't quite so cheerful. Now I'm back to being in bed, praying for sleep. It did its work, but instead of worrying about the alien bursting out of my belly, I am worried about battery acid shooting out of my hiney.

Tomorrow I get Adriamycin again. I wonder if I'm going to have to do this all over again.

Labels: Adriamycin, Brian, constipation, Lita

2 comments

Tomorrow I will receive Adriamycin for the first time. This is the scary bright red chemo drug also known as the "Red Devil."

Either Lita is right and I am afraid for no reason--she says she has successfully treated a 90-year-old lady with Adriamycin--or the warning stories are true and it makes people ill, causes fatigue, and makes your pee turn red.

She did actually say something to me about whether I could possibly work half-time, which worries me. Why? Will I need to?

I hope I don't experience fatigue immediately. I am tired of being fatigued. I also hope I don't experience nausea. I have such a fear and horror of the whole gagging and spewing thing, that I can actually vomit from anxiety. I am a bit worried that I will work myself into a fervor that anti-emetics may not be able to deal with.

Wish me luck.

On a completely unrelated note, Brian lost a giant filling this weekend while eating gummi bears. So when I went shopping with my mom Sunday, I brought him some gummi ghosts and bats from Harry and David. He also ate some of the Moose Munch (original dark chocolate...MAN that stuff is good) I got for myself. He is going to the dentist this afternoon and joked that he was going to pack the cavity hole with caramel corn. I told him he could bring the tooth chunk to his boss as proof that he needs to leave work early.

At least it would have been a good way to get the tooth chunk off of our bathroom counter.

Labels: Adriamycin, anxiety, Brian, Lita, mom, nausea

3 comments

I thought my news to report would be about scan results. It was getting time to post something; no fewer than four individual people (not including Brian) contacted me wanting to know how my scans went.

The bone scan was the same as last time, one blobule in the liver might be larger. The chest scan shows two teensy nodules which may be new, or may have been missed by previous scans. This past Tuesday it was decided that I would switch chemotherapies.

This past Tuesday was NOT my usual day to see Lita and Dr. Hayes. The reason I went in on what would have been a day at work, is that over the weekend I started experiencing rear-endal discomfort. Again. This time it was decidedly odd; it felt like my muscles were spasming and just couldn't relax. Oh, and last Thursday at work I peed a blood clot. And again on Sunday. Then Monday night my butt issues became decidedly even more uncomfortable, despite the ibuprofen and the sitz baths.

So Lita asked me to come in to be poked and prodded.

At the appointment (which was at noon), we decided to switch up chemotherapies because it looks like Abraxane just isn't working any more. (A year is not at all a bad run with a chemotherapy drug, so this isn't terrible.) I was offered the choice of Xeloda, which is chemo in pill form--and is purported to not cause hair loss--or Adriamycin, one of the ol' standbys for treating breast cancer, which has a ghastly reputation although Lita claims the side effects aren't that bad given how they will treat me.

I thought about it, and had eyebrows--glorious eyebrows!--briefly in my grasp. I asked for Xeloda. Then Dr. Hayes reconsidered based on the mouth sores Xeloda can cause; such sores can occur at the other end, too, and in light of my recurring discomfort, he doesn't want me to have it.

Then they asked me to go to the emergency room for further evaluation, since ailments of the behind are out of their realm of expertise. Brian and I went to lunch then went back to the ER to go to the hospital.

First we sat in a waiting room for a while. Then they came and took several vials of blood and wanted a urine sample. Then we went and sat in the combined patient/visitor waiting room for a couple of hours. Then I was called and they took us to a room where I changed into a gown. Then the fun began. Periodically technicians would come to take my vitals; I always have to explain the blood pressure issue (right forearm only). I got very thirsty and was not allowed water, although eventually somebody brought me a small cup of ice chips. A doctor came and got detailed information, then, after conferring with Lita, decided more cultures were needed so they would know what kind of exams they could do. So somebody came to access my port and get more blood--those were some of the biggest honkin' vials I've ever seen. Somebody also came with lidocaine gel, which should help soothe the discomfort and not have the icky effects I had with the last tube of cream the ER people gave me (nitroglycerin). After deciding my neutrophil count was too low, the doctor decided on a CT scan, but told me the barium wouldn't be necessary. I gave her two big thumbs up and decided I could bear the agony of the iodine contrast since there was to be no barfium! Woohoo!

About an hour later, a nurse walked in shaking a bottle of barium.

I cried.

Then someone came to try to insert an IV for the contrast. Tried, failed, and had to go get someone else. The man who came next pored over my arm for a while, and concluded he couldn't find a vein, so would have to call someone who has an ultrasound machine that helps find veins. About an hour (and a bottle of barium later) the new technician came by and when informed that I had a port, told me the ultrasound method was best for finding deep veins in the location where my port is, so wouldn't work for me. She did the painful tapping thing on my arm and was able to find a vein in my hand, so I finally got my IV.

In the meantime, the doctor came by again. By this time it was about 9p.m. She explained to me that the barium was necessary after all--or so she had been convinced by the radiologist--because otherwise if there was an abscess (I was pretty sure I didn't have one of THOSE), it wouldn't show up as distinct from any liquid contents of the bowels. She also informed me that since they wanted to be sure the barium had gone all the way through, I'd have to wait until after having a bowel movement before they could do the scan.

"Usually that happens about 3-4 hours after patients drink the barium preparation."

It wasn't enough that I, a patient in the ER with an observed fissure, was going to have to deal with the unpleasant aftereffects of barium knowing it was going to hurt like a mofo coming out, but finding out I was going to be at the hospital until the ridiculously wee hours was the final straw. I had a 9a.m. meeting scheduled for Wednesday. This couldn't be happening.

So we waited. My stomach burbled. We watched tv. Brian went to get himself a candy bar. Finally the nurse came and told me I'd have to provide another urine sample. I suspect it was a ruse to get me to the bathroom, but I can't be sure. In any case, the barium (painfully) did its work, and I got sent for the CT scan.

When the scan was over, the doctor came back to the room and told me her shift ended hours ago and that she was going home, but that I would have to wait 45 more minutes for the CT scan results.

"I can see you're upset," she said. "I can't blame you."

She could SEE I was upset because I had a nasty expression on my face and was a seething pile of misery and impotent rage. If my hand had not been impaired by an IV and my butt hadn't felt so bad, I would have launched out of the bed and throttled her.

She said she had explained my situation to her colleague, had left a prescription for a larger tube of gel, and that she was sorry I had to be there so late.

You and me both, lady.

The other doctor came by with the scan results when I had gotten up to go use the restroom again. I made sure to slam the door as loudly as I could and looked for supplies to pilfer.

There was no abscess. I know my doctors want to do the responsible thing and fully investigate things that could implode in my innards and kill me, but I am not submitting to this kind of marathon-ER thing again. I should have walked out when the barium walked in. We spent over twelve F*cking hours at the ER, and came away with "nope, no abscess" and a damn tube of gel. It was past two when we got home. And because of the lovely effects of drinking two bottles of stuff that insists on leaving your body in the most unpleasant way possible, I was not in bed until about 3:30.

I was so tired and disoriented when I got up this morning at 7 (I needed time to get ready for the day of work I absolutely could not miss--and I actually did make it in time. I deserve a medal) that when I staggered into the bathroom first thing to pee, I got very confused about a sensation of numbness when wiping myself that I just couldn't account for at first.

Until I noticed that I hadn't actually managed to pull down my underwear.

I hate the f*cking ER.

Labels: Abraxane, Adriamycin, baldness, barium, bone scan, Brian, CT scan, Dr. Hayes, fissure, hospital, IV, Lita, liver, lungs, Xeloda

2 comments

I am once again going for scans tomorrow. This is icky for a variety of reasons: first, barium is nasty and careens through the digestive system like a foamy, liquid freight train. I call it "barfium." Secondly: they scheduled my CT scan for 3pm, ensuring that I will be as hungry and cranky as possible. Thirdly: I had my last scan not so long ago and am dismayed that my liver counts and tumor marker counts appear to warrant scans again so soon.

I tried to ask for the kind of barium preparation that is a powder and can be mixed with clear liquid (like water or fruit juice), but Lita was extremely skeptical about whether our equipment is able to detect that particular kind of barium. Who knew that the stuff they make you chug or that they squirt into you might be hardware-specific? I never followed up on this so will be drinking two large cups of berry-flavored foam that weigh five pounds each tomorrow around 2:00.

I hate that my scan was scheduled for the afternoon. I will be able to eat breakfast, but not lunch. I get very cranky (and fatigued and become filled with low blood sugar-induced despair) when I can't eat lunch. If the scan were in the morning, I wouldn't mind because I'm used to fasting over night. As it is, I will get more and more irritated and crabby as the day wears on, and I have already apologized to my mom (who will be accompanying me to the appointment) for the fact that I will probably be very unpleasant company. The bone scan injection is at 4, then I have to come back at 8. To make things even more "convenient," the person who did the scheduling attempted to switch my infusion to noon.

That's right--I get chemo the same day. My appointment was at 9, so I planned to enjoy a muffin and relax at the Canton center, where it's very pleasant, low-key, and Brian and I can watch dvds without being cramped in to a huge assembly line of sick people. Switching the appointment to noon does not make it better. I'd have trouble getting from Canton to the hospital in time, and would completely miss out on the most excellent baked goods. I guess they were thinking that grouping things together would disrupt my day less, but I really don't need my day to be a solid mass of medical procedure, thank you. I'm happy to stagger things. Even the 3-4 hour gap between the injection and the bone scan is ok--it will give me time to go have dinner with my mom (or at least allow her to frantically acquire some chicken nuggets from a drive-thru to stuff into my mouth before she has to strangle me).

Results should be available Thursday morning. I certainly don't want bad news, although more of the same results will be disquieting, too. I don't want to just barely hang on, I want to see improvement. I'd love to have things knocked back to a degree where I could go on another chemo vacation.

Baxter is also going for medical treatment tomorrow. He is having a very special operation. I've tried to tell him that this is the consequence for "marking" the furniture in the living room, but we were going to have him fixed anyway. I have decided he is no longer allowed on the sofa and chair, except by invitation. It can be very disconcerting to have a 15 pound puppy suddenly flying at you from the ottoman, and since he seems to have the idea that the sofa and chair are HIS territory, he needs to be disabused of this notion. So far it's going reasonably well. He keeps trying, but we keep pre-empting his leaps to the sofa and squirting him with water when necessary. Oddly, he's been more pleasant in general since he's not allowed free access to the furniture.

The lesson here is that pets need boundaries. They also need to have their grown-up parts removed for the greater good.

Does anybody know of a really effective pet-odor neutralizer? I've been using one that says it has "enzyme action," but I'm dissatisfied.

Labels: barium, Baxter, bone scan, Brian, CT scan, Lita, mom, tumor marker

0 comments

I don't care for Robert Frost, personally, but he did at least speak truly when he said, "good fences make good neighbors." Maybe he meant it ironically, but as a new condo owner, I think one can certainly have an overabundance of the neighborly influence.

One day the neighborly condo association president invited herself over to bring me the new folder of contact information and bylaws. That's fine, but it happened to be a day on which I was feeling quite icky. I was in pajamas, had no hair or makeup on, and felt kind of ill. She wanted to invite herself in to sit on my sofa and go over the contents of the folder.

"Now isn't really a good time," I told her, "But I'd be happy to look at it later." I had grabbed a hat to put on my bald head which was lined with faux fur and too hot to be wearing that day. I started to sweat. Instead of handing me the folder, the old lady insisted on standing in my open doorway, reading verbatim the contents of the folder as flies buzzed in and out the door.

She later saw fit to let Brian know that the sticker on his license plate was expired (it was; the expiration date is my mom's birthday so it totally slipped my mind, and the Secretary of State did not send us the renewal notice) because he had to park in a spot kitty-corner to her building. Brian initially tried to park under the trees close to our garage, but one of our neighbors informed him that it was a fire lane and parking wasn't allowed there. So now Brian parks where the condo association president lady can inspect his expired sticker (and suggest if it's not taken care of, the police will be notified), and our neighbor can park in the fire lane under the trees.

Those same neighbors on one side have taken to heart the whole fence issue and have constructed a Wall of Doom^tm in the communal garage. What started as a pile of gardening crap, shelves, wagons, boxes, bags, and who knows what else, has been fortified by means of plywood, additional shelving units, poster board, and clips into something that is immovable and comes right up to the scored line in the pavement.

Technically, the space on that side of the scored line is theirs, but it means when I pull my car into the garage, I can't open the car door all the way. It's difficult under the best of circumstances to haul my gimpy carcass out of the car (which is rather sporty and low to the ground), but if I have to squeeze out of a door that is trying to slam shut on me it's especially hard.

The space over there is also filled with a hanging hockey net, several bikes with layers upon layers of dust, and a crazy assortment of shoes, bags, candy canes hanging off of the hockey net.

Our neighbor on the other side has a tidier garage space. She used to apologize for her dog's barking, but since Brian brought his Harley over from my mom's and has started riding it to work on nice days, the neighbor no longer apologizes about the noise her dog makes. According to the condo association bylaws, motorcycles must be kept parked in the garage. In order to do so, Brian has to park sideways in front of my car--he found a cute little flashing signal that lets me know when to stop pulling forward so I don't knock the bike over. The neighbor has since put a brand-new carpet runner in the garage in the area on her side of the scored pavement line, where Brian needs to wheel his bike in order to turn it around. I told him to take a carpet remnant from when we had the master bedroom carpet replaced to put over her carpet runner so she wouldn't be able to complain that his bike messed it up.

What kind of passive-aggressive doofus puts a carpet runner in the garage?

Evidently, both neighbors are dissatisfied at the condition in which our front garden space is kept. I enjoy gardening and meant to do some planting this year, but was more tired from the chemo than I thought I would be. I was also unexpectedly ill several times. I'm still pretty stiff, too. So I didn't do planting, and the weeds started to pop up.

I hoped the condo association would deal with the dead bush soon. It was there when we moved in, and I hated that wretched eyesore.

At my mom's condo, the association maintains the lawns, trees, and shrubberies. I expected it to be the same at my condo. After all, we have to get special permission to put in shrubs or do landscaping. When were they going to take out that hideous bush?

A day before Brian and I were to leave for a Fourth of July weekend vacation, we got a letter from the association informing us that we had seven days to remove the offending plant, or we would be assessed a fine of a hundred-something dollars. I was utterly flummoxed--why wouldn't anybody say anything HELPFUL about the bush before contacting the association about penalties? Where on earth were we going to find somebody to remove the shrub before leaving the next day? Brian had to get out there with a hacksaw to chop the thing down, then since there was no trash pickup that evening (and putting whole dead shrubs into the trash pickup pile isn't allowed, I'm sure), he had to jam the thing into his car--which is now full of brown needles--and sneak it into the dumpster at our old apartment.

Brian and I also spent some time pulling out the obvious weeds from the remaining (somewhat slug-eaten) violets, when the neighbor with the dog came out to pick at imaginary weeds in her own garden space.

"Pulling weeds, eh?" she asked us as she picked maple seeds out of her garden's gravel. She then proceeded to tell us about a neighbor who never weeded and about what a horrible eyesore it was. Somewhere over there--she waved indistinctly. I didn't listen closely. Our neighbors could have said something helpful about the plant problem before getting us threatened with monetary penalties.

About two weeks ago I came home from work and arrived only slightly after Brian. I heard him talking with someone outside (he had taken Baxter outside) and tried to listen from the window as I had already taken my hair off. I couldn't hear anything, so I grabbed a baseball cap and went outside to say hello.

Brian was talking to the neighbor with the Wall of Doom^tm, who immediately said to me, "Brian told me about your condition--I'm so sorry. If there's anything I can do--if you need a ride somewhere, or just want some company, let me know." I thanked her.

She said she and the other neighbor had been talking about me. "We thought you had that, what's it called--when you lose your hair..."

"Alopecia?" I said.

"That's right. We thought maybe you had alopecia."

Of course. The reason I'm a crappy gardener and have weeds and let the license tags expire and don't remove dead bushes, and come to the door in my pajamas and don't let people in is that I'm LAZY and have alopecia.

I'm glad that's all cleared up.

Labels: baldness, Brian, chemo, condominium, neighbor

2 comments

The last post sports a comment wherein a fellow-survivor says she is participating in an internet meme and has tagged me "It." The rules are to post seven facts about myself and then tag seven other people, listing their names in my blog with links to get people there.

Well, I have a list of people's names to choose from right over yonder in the margin, but what if those people already got tagged and get irked at being tagged again? What if I start getting multiple tags from other people who are desperate to come up with seven people to tag? I could Google for survivors to tag, but what if they take unkindly to some random stranger tagging them? I just can't do it. I have a fear and horror of irritating people (which is quite unfortunate because I seem to do so regularly without intention anyway).

I'll go ahead and post some facts since I was asked, but I don't really want to intrude on other people.

1. I can't swim. I have an extreme dislike of putting my face in the water, and am almost always sure I am going to drown unless I have some kind of flotation device. However, I go to the beach every year for vacation.

2. I keep talking Brian out of selling his motorcycle, only partly because he enjoys riding so much. The other reason is that I think it's incredibly exciting to be married to a man who rides a Harley, and I would be sad to not be able to ride with him. Besides, what would I do with my chaps if he had no motorcycle?

3. I have chaps. They have fringe down the sides, tee hee.

4. My Star Wars Death Star Space Station Playset is complete with the original trash compactor foam and rope swing. I had to acquire components from multiple sources. eBay: allowing people to relive childhood for lots of money plus shipping.

5. I have ridden a camel at Giza and been inside one of the pyramids.

6. I was born two months early but was actually bigger than the other babies in the preemie ward. It was the first and last time I was ever "taller" than my peers. It is also one of the few times I have ever been early for anything.

7. I can recite the "Pledge of Allegiance" in Latin.

Labels: Brian, motorcycle, vacation

2 comments

Just in case anyone is hyperventilating on the edge of his or her seat waiting to hear the results of my scans: nothing is significantly different. According to the reports, there may be "new areas of uptake" on the upper thoracic spine, and the "dome of the liver" might show a difference, but Lita showed me side-by-side comparisons with the scans from three months ago, and it was really hard to see any difference. There are so many blobs in my liver, the possible increase in size of one hardly makes a difference. Dr. Hayes suggested sitting tight for now, rescanning in a few months, and then making a decision whether to continue with Abraxane.

He said being ill from other things--like a horrible butt issue--might cause a false positive. I'm not sure I'm convinced that my fissure could somehow impact a bone scan, but whatever.

Also, Lita and Dr. Hayes decided they wanted to look at my butt to laugh and point, I'm sure. I had to curl up sideways on the exam table and I said, "This is the most undignified thing ever." They said they would ask a surgeon they both trust about whether I was on a suitable antibiotic and that I'd skip chemo that week (this was last Tuesday), and then skip the Avastin today and just go with the Abraxane and Zometa. (The nurse was confused and brought out a Neupogen shot, which we never do the day of chemo--to be honest, we hardly do it at all, although that needs to change since I'm sure the reason I was so sick this past year is because I kept weaseling out of having Brian give me the shots--she felt bad because each shot costs $3,000; luckily somebody else in the infusion area wanted it so it didn't go to waste.)

I am happy to report that my butt is feeling much better now, so I am also able to sit on the edge of my seat.

Labels: Abraxane, Avastin, bone scan, Brian, chemo, CT scan, Dr. Hayes, fissure, infusion, Lita, Neupogen

0 comments

To the person who Meeboed Me at 11:02 today, Hi! I'm sorry I was actually away from the computer and forgot to select "away" from among the Meebo options. I missed you by about 15 minutes.

To answer your question, no I am not currently in remission. I have blobby tumors in my liver for which I regularly receive Abraxane and Avastin. I am doing reasonably well, however. A year and a half ago I couldn't walk and felt sick all the time. Now (aside from baldness, gross fingernails, and an unrelated issue of the rear endal area) I feel pretty good and am not afraid that my bones will snap like so many dried twigs.

I am also able to receive offline Meebo messages; feel free to leave me a message (like Grace did--Hi Grace! I was very glad to hear from you. I hope things are going very well). Let me know who you are, too.

Rear Endal Update

I spent yesterday at the Emergency Room on the advice of my general practitioner, who consulted with the specialist at her office who suggested he wouldn't be able to do an internal exam either without causing pain and distress.

The night before, I took a very strong pain medication which resulted in my feeling sick that night and the next day. I was revisited by breakfast, and when we showed up at the ER, I had to ask Brian to get me one of the familiar pink bins immediately. I had difficulty explaining to the people at the reception area that I was not there because of nausea and vomiting: "I have--BLLLAAAAAAAARRRRRRKKKKKKKK--a fissure, or--GUUURRRRK--hemorrhoid or--URP--something..."

They were very concerned about the nausea and gave me Zofran. Then, after answering repeated questions about what I felt my symptoms were, I had external exams performed both by the ER doctor and the consulting surgeons. The first located what is likely the cause of my pain, thought it might be a fistula, and squooshed it. Then the surgeon located it, noted a fissure and that there was nothing to squoosh: "See that crater?"

The surgical team concluded that there was nothing warranting surgery at this time, and the lead surgeon pointed out that any surgical procedure they could do would have a high likelihood of some unfortunate consequences. I am reminded of the following from Monty Python's Life of Brian:

Pontius Pilate: He has a wife, you know. You know what she's called? She's called... 'Incontinentia'... Incontinentia Buttocks
Pontius Pilate: [Guards are laughing] Stop! What is all this?
Pontius Pilate: [Laughing continues] I've had enough of this wowdy webel sniggewing behaviour. Silence! Call yourselves Pwaetowian guards?.

I can't say I'm sorry to have avoided surgery, but the medical professionals were not able to provide me with any relief for my...issue.

"Use a Sitz bath." Great. I don't personally object to sitting my butt in a bath of warm water, but I'm not convinced this will help relieve my discomfort when water stings.

They also gave me a cream which is a vasodialator and is apparently made of hot sauce. I have used it once and do not plan to do so again.

I have concluded that the solution to what ails me is to simply never poop again. I find this a highly logical and practical thing and will put it into effect immediately. I am not joking about this.

Labels: Brian, fissure, hemorrhoids, hospital, Meebo, nausea

1 comments

Stop reading right now if you are squeamish.

No really; I mean it.

Among all the other things I have to deal with as a perpetual patient (the appointments, the scans, the procedures, the nasty medications, the fingernail issues, the baldness, the skin problems, the indigestion, the nosebleeds--not to mention the ire of coworkers as I burn through sick time and miss work), I now have to deal with the indignity of not being able to sit.

I am not talking about mild discomfort that can occur as described by commercials for Tucks medicated wipes; this is not "itching and burning." It is agonizing pain, fear of having to have a bowel movement, becoming light-headed and faint in the bathroom, and having trouble walking. Over the counter remedies are not helping. Preparation H hasn't helped; using suppositories feels like I'm stuffing broken crayons into my bum, which then hurts; anything with witch hazel burns like a mofo (that's short for "motherfucker," in case you don't know); the Fleets pads Brian bought me help very slightly on the external areas but do nothing for the internal agony.

I scheduled an appointment to see the doctor today (which certainly didn't help me over the weekend) and am terrified to go--what kind of procedure will she do to verify that I'm in pain? How badly is it going to hurt?

Also, I have a CT scan scheduled for tomorrow and am terrified of what it will be like when the barium decides to leave my body all at once. I called and left a message for Lita: can the scan be rescheduled? Do I really have to do it tomorrow?

It isn't enough that I have to suffer from one of the scariest diseases on the planet (I have to say I actually think ebola is more frightening, but I digress), but now I have to deal with one of the most humiliating conditions as well.

Labels: Brian, hemorrhoids, Lita

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Frodo: I wish the ring had never come to me. I wish none of this had happened.

Gandalf: So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given to us.

Brian and I have been rewatching the Lord of the Rings movies on dvd. I haven't watched them with him before; I think the last time I saw them was some time late in 2004. I loved the films; I have both the theatrical releases and the extended versions on dvd. I have at least one of the soundtrack CDs. I have been to see "Lord of the Rings in Concert" which is performed with a slideshow of concept art from the movies. I also thoroughly embarrassed my friends Sarah and Danielle by knowing the actual poem recounting how many rings there are when we saw the display of art, props and costumes at the Museum of Science in Boston. ("Three rings for elven kings under the sky/Seven for the dwarf lords in their halls of stone...")

Naturally, the way I see the world now is colored by experiences I didn't have then, so when Frodo and Gandalf talked about the burden of carrying the ring, I saw it quite differently and nearly wept. I actually clamped my hand over my mouth and tears streamed down my face.

I wondered if there was an analogy to be made between the burden of carrying the One Ring and with cancer. Frodo, through the course of the movies, becomes more and more worn down and exhausted. Galadriel comments at a pivotal moment in The Two Towers that Frodo is coming to understand that his quest will claim his life. I get more and more tired with each chemo treatment, and there are a limited number of chemotherapy drugs available. This disease might claim my life; it has certainly been irrevocably altered. Frodo takes pity on Gollum because he recognizes himself in the poor creature, and Gollum is the only one really understands fully how Frodo feels.

My disease differs from the One Ring in a very crucial sense: it is not self-aware. Cancer is horrible and sucks beyond all belief, but it is not inherently evil. It does not have purpose; it is a cellular aberration that medicine does not yet know how to fully deal with. I should be grateful that at least there aren't overtly malevolent forces at work; ringwraiths are not coming to kill me in my sleep.

Despite this, I occasionally get consumed by My Life as a Cancer Patient. Maybe if I let my neighbors know how tired I've been from chemotherapy, the homeowner's association will lighten up about the weeds in the front flower bed. Maybe if I have a candid discussion at work about what my level of endurance really is and how I often work from home and on weekends, people would be more understanding and less inclined to think of me as "unreliable." My assumption at the wedding a few weeks ago was that everybody was caught up in my cancer drama; maybe, like Todd and my friend Melissa have since pointed out, they're just really glad Brian didn't end up with somebody horrible and they're happy I'm a terrific person.

The other parts of the analogy work, though. Frodo assumes he is alone and tries to leave the Fellowship to go off by himself. Sam refuses to accept that as the appropriate course and clings to him. Brian has steadfastly refused to let me go on without support, and my friend Melissa reminds me that I, in fact, have a fellowship of my own. My friends and family--and even internet strangers--while not having the same experience I do, are pulling for me and that can make all the difference.

I wish my burden had never come to me, too, but all I can do is decide what to do with the time that is given to me. At least I don't have to do it alone.

Labels: Brian, chemo, condominium, Danielle, Sarah, Todd

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A few weeks ago Brian and I traveled to Midland, Michigan to see Brian's cousin Tom marry Amy, a delightful person who was a lovely, radiant bride. The wedding was held outdoors at Dow Gardens. It threatened to rain but then the clouds passed over and it was actually pretty nice. The bridesmaids looked great, the groomsmen's tuxedos were very sharp, and the flower girls had the coolest dresses ever: they had loose flower petals encased in swathes of tulle, which made them somewhat resemble little snowglobes with lavender-colored snow. (Both dresses, I believe, sprung leaks and the poor girls were dripping petals at the reception.)

Anyway, going around meeting Brian's relatives after the ceremony, many people said something resembling this: "So you're Janet. I've heard so much about you! "

But what I heard was, "So you're Janet. You're the one with cancer! " Ordinarily I'd make a joke about how I hoped they'd heard only good things, but I'm pretty sure that's not the case and it seemed a tad bit awkward.

I don't personally mind if people know, and I'm fine with sharing details (if people really want them). I can go on quite at length about my experience and treatments, but that particular day really didn't seem the appropriate time. I thought I was going to go to an event that would be all about somebody else and new beginnings and such. Instead, all day I felt like it was CANCER CANCER CANCER CANCER CANCER CANCER CANCER CANCER.

Brian's aunt is a survivor and wanted to talk at the reception about her support group. When we took our leave to go home, the bride (whom I had never met nor spoken to before that day) asked how my treatments were going. I know people mean well, but is there no escape?

On the plus side, Brian and I got to dance. I didn't get to dance at my own wedding because I was using a walker back then.

Labels: Brian, wedding

3 comments

I had a nasty cold last week (which now Brian seems to be getting). It has progressed to a nagging, unproductive cough, robbing me of sleep and sanity. I sound awful, and not just because of the retainers. It is an effort to squeeze sound out of my throat. I showed up for work yesterday because I had four meetings I really didn't think I could skip; people there keep looking at me funny.

I was coughing at infusion on Tuesday, so the nurses had me talk to a PA. The PA asked me a series of questions about my cough and thought it might be a "reactive airway" thing, and asked if I'd ever had asthma. She set me up with an appointment with my general practitioner for Wednesday evening--I went to the doctor and wrote down as my reason for visit: "horrible, sleep-depriving cough." She gave me a boatload of medications (prednisone, an antibiotic, special cough medicine with a narcotic) and promised I would be able to sleep that night. The codeine made me loopy, I saw weird stuff when I closed my eyes, but I could not stop coughing and my brain would not shut off.

I'm still supposed to go for a chest ex-ray, even though everyone agrees my lungs sound ok. I just can't breathe without hacking. I am wary of trying to drive anywhere, even to get the chest ex-ray. I know that I am impaired.

I can't even think of a clever way to conclude this post. It looks like I will not be traveling to Cleveland this weekend (it would have worked out great...seeing my dad on Father's Day...quel bummer). I am going to try to drag my carcass to Race for the Cure Saturday. Maybe I should call and beg the doctor for either some kind of inhaler or a horse tranquilizer.

Labels: Brian, Cleveland, codeine, Dad, infusion, prednisone, Race for the Cure, sick days

1 comments

Most of the (three, maybe four) people who look at this blog have probably already received solicitation emails, but it doesn't hurt to ask more than once.

Please consider sponsoring me in this year's Race for the Cure.

Few people know that Susan G. Komen, for whom the foundation was named, died of breast cancer at age 36. She listened to her doctors, didn't think to go to a research center, was pronounced "cured," and then found out (horribly) that her doctors were mistaken.

Sound familiar?

Susan G. Komen was treated for her recurrent cancer in a time when the medications I am on didn't exist. Perhaps with more advanced treatment, she could have survived. The drugs I am on now didn't exist just a few years ago, and I hope that even better treatments come along in the near future.

The Susan G. Komen Race for the cure is dedicated to supporting "the eradication of breast cancer as a life-threatening disease." I'd like to see that shortened to "the eradication of breast cancer." Neither will happen without awareness, better screening, patient advocacy and research, all of which are causes supported by Race for the Cure.

You can support it, too.

A year and a half ago, I wasn't sure I'd ever be walking without assistance, and I am happy to be participating in the Race for the Cure for the second time since then.

I also have very selfish reasons for asking for donations: If I raise enough money, I get a hat. Brian took the hat I got last year so I need another one.

Labels: awareness, Brian, Race for the Cure

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The other night I watched an Entertainment Tonight segment on Mr. T's battle with cancer. Elizabeth Edwards and Tony Snow are both dealing with recurrences. Melissa Etheridge sings about her ordeal. Ted Koppel aired a documentary about his friend Leroy Sievers, a journalist. Lance. I commented to Brian that "Everybody's doing it... I can't believe how 'hip' I am!"

"Cancer is the new Black," he said.

I've never been in on a trend before. As a kid, I had dorky hair and clothes. When I moved from California to Tennessee, my mom bought me school clothes that would have been reasonably accepted in Northern California (stirrup pants with oversized sweatshirts and shaker sweaters), but in Tennessee--which was a couple of years behind--made me look like I was wearing my pajamas to school.

It's not that cancer is some new scourge; it's that people are talking about it like never before. Look at me--not only am I talking about it, I am blogging about it, which is like the double-whammy of trends, these days. I'm so edgy, I might accidentally cut myself.

And I don't have to worry about growing out or cutting a dorky hairstyle: all I have to do is take that one off and slap another one on my lumpy, bald head. Chic.

Labels: baldness, blog, Brian, mom

3 comments

Anybody remember that Far Side cartoon? Sadly, I cannot link to any panels without causing Mr. Larson distress and loss of royalties, or something.

Baxter is no longer allowed to play with the neighbor's fleabag. We will be going to the vet Saturday for vaccinations and a flea treatment. Man, I hate those things. Skippy never has fleas. I only ever noticed one flea on my dog, Tribble, and if any dog was likely to be able to harbor vermin, it would have been that one (hairball). Brian claims to have not noticed anything amiss. Since Baxter's new thing is to sit on the back of the sofa above my head (he likes to lick my bald scalp, which makes me worry about what will happen when I have follicularly challenged guests), I am rightfully concerned about this.

Baxter has also successfully managed to go down the stairs several times on his own. He will occasionally forget that he has done so, and will cry at the top of the stairs. This is both good and bad. It is good because carrying him down the stairs is perilous since he tends to be rather...squirmy. It is bad because the more independence he has, the more areas have to be manually blocked to keep him from running amok and destroying things. Puppies are not to be trusted. I dread the day he tries the basement stairs on his own. So much stuff to be destroyed...I think we are going to need some more baby gates.

Labels: baldness, Baxter, Brian

3 comments

Brian and I went to downtown Detroit today to record an interview with Story Corps. Brian was the interviewer, and I responded to his questions, which were primarily about my illness and what I see for the future. Our session, forty minutes long, was recorded and will be sent to the Library of Congress.

What's a little bit embarrassing is that we got a Story Corps interview with something called the "Griot Initiative," which is dedicated to recording the stories of African Americans for posterity, with a special emphasis on World War II veterans and people involved in the Civil Rights struggle. The interviews in Detroit will also go to the Charles H. Wright Museum of African-American History. We don't exactly fit the sought-after demographic for the Griot Initiative, but were advised to come to the appointment anyway.

Brian had a list of questions which he prepared in advance based on suggestions from the Story Corps site. At first he asked me who the most influential person in my life was, what my most memorable moment with him was, and then he asked me about what I see in the future.

I don't think the sound engineer was prepared for what he heard.

I don't know how much "future" I will have. I certainly don't see children in my future, or adoption. I talked about being diagnosed years ago, how shocking it was, how "lucky" I had been told I was, and about the fact that even before we met I had told him over the phone that I was healed and would not have to worry about cancer again. When I got my official diagnosis and had to tell my family, I called my mom from the parking lot at the doctor's office, and then went home to tell Brian I had essentially lied to him before we met. I was afraid I was going home to tell him news that would make him pack up and leave; I'm not sure I would have blamed him.

He tells me not to worry that I "lied."

We talked about how afraid we both were when I was hospitalized. I remember having a conversation with my mom (at this point Brian was looking for apartments without stairs to move into) about how I always thought that when the time came to move out of my apartment, it would be to move into a house or a condo, and that it didn't seem that signing a 30-year mortgage would be possible. My horizon loomed very close and my life today was unimaginable to me then, wracked with pain, unable to walk, and in a hospital bed surrounded by bins to vomit into.

I am happy to be wrong. I'm happy to feel better and am happy to be less afraid that I will die soon. I have to make it at least nine more years because Brian has promised me an anniversary diamond.

We have a copy of the interview on CD. The recording engineer was very moved; he told us that both of his parents have cancer, so he at least knows what it's like to be the other person in that situation. He also pointed out that our being a part of the Griot Initiative, well, it didn't matter that we are white because what we talked about was really universal.

I wish cancer wasn't universal and that it didn't touch on almost everybody's lives.

Labels: Brian, condominium, detroit, hospital, mom, story corps

2 comments

They need to take impressions for retainers and remove the braces at appointments that are one week apart from each other. Since Mondays in May are rather spoken for, I will have to wait until June 4th to have the impressions made, and June 11th to have the bands taken off.

I plan to go to Famous Dave's for ribs and corn on the cob. Anyone care to join?

Also, I saw the dermatologist yesterday, who agreed that the first batch of creams was insufficient ("You should be way more dried out than that"), so I now have a cream that combines an antibiotic with 5% benzoyl peroxide, and a cream that is a stronger retinoid than the one I've been using. I am to use the antibiotic cream all over my face and scalp twice daily, and the retinoid at night only on my face.

They were doing "patient appreciation" at the dermatologist's office (the lab area was doing a bingo promotion for staff...it must be Wacky Activity Week at the hospital, or something), and I was invited by the checkin lady to help myself to some snacks and goodies. They had fun size candies, cookies, donuts, coffee, bottled water, and fruit. So help me, I really wanted an apple, but I will have to wait for that. I was then asked to fill out a "patient satisfaction" survey. Sure, bribe us with cookies THEN ask us how happy we are...devious. My cookies were pretty good, though. I was satisfied.

At my infusion, I discovered that my Decadron dose has been cut in half. I feel pretty good today, so hopefully will not have horrific symptoms and nausea. Brian called me at the appointment and brought carryout from Wendy's to my infusion. The nurses all got jealous and were wistful about the Wendy's at the hospital being closed down.

Baxter was a little spastic when we got home, but settled down eventually. He did an awesomely clever housetraining thing: he pulled his wee pad out of the crate downstairs, and then peed on THAT instead of on the carpet. (We had taken him out recently, but I guess when you gotta go, you gotta go.) We have a genius puppy! Now if only we could convey to him that chewing on hands/feet/wires/curtains/furniture is a bad idea. We should have named him Proteethius.

Labels: Baxter, braces, Brian, Decadron, dermatologist, nausea

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Baxter Pugsley Elkins came home Sunday and has been chewing on hands and shoelaces ever since. I have been frantically googling "puppy biting" for tips on how to curtail this annoying habit; I had forgotten how bitey puppies are.

He is very cute, though. He is a "stone fawn" pug (less desirable coloring, having black hairs mixed in with the tan and a dark saddle on his back, but the AKC can sit and spin). There were three puppies left from the litter when we got there to choose: two boys and a girl. I had read that boy pugs are a bit more affectionate than the females and of the two boys, Baxter was the most interested in hanging out with us while the other two puppies careened around the room. Their dad, Buddy, was very happy to crawl into my lap and demand ear scratches. He was very friendly and, uh, substantial.

Baxter does not yet enjoy going outside, nor has he quite figured out what it is for. Brian made excellent progress with him on Tuesday, but I think the training is going to be disrupted by our work schedules. Right now Baxter is at home in the upstairs bathroom, where he can be contained. The shower curtains are tucked into the tub and the floor is covered with "wee pads." We put his woolly bed up there, too, along with some food and water.

If he gets out, he'll have access to the contents of the master bedroom, which could bode ill for shoes and clothing.

The goal is to crate train Baxter so that he won't freak out if he needs to be transported, and also so that his location can be controlled at night and we'll know where he is. So far he hasn't liked it much and spends a lot of time crying at night. Brian has been turning the white noise wave sounds on his clock radio on at night. I can still hear Baxter carrying on which makes me feel a mix of guilt/annoyance/panic/why did we get a puppy/guilt for doubting this was the best decision ever.

He's so cute, though. They don't stay puppies forever; if Buddy is any indication, Baxter will make a great companion dog.

Labels: Baxter, Brian, pug

1 comments

It only took one poke for the I.V. to go in yesterday; I was shocked.

Seriously, that never happens. Often even when the I.V. does go in, the vein completely collapses when they try to get a "return". I have no idea what that means, because I can't look at it sticking out of my hand/arm/wherever and usually have my eyes clenched shut when they are doing something involving pointy stabby things.

I do not know when I will have the results; typically Lita gives them to me at the next appointment. So possibly this means next Tuesday, at which point I will find out if my treatment regimen will be completely overhauled. I will find out if my liver is twice the size it's supposed to be (presumably not; one ought to be able to palpate such a thing).

Yesterday after my appointment, I was very cold. The Dairy Queen Blizzard probably didn't help, but we had to stop at Blockbuster on the way home and there was a DQ right there. After Brian left for class, I got even more unbelievably cold. I sat in the living room with the hood on my sweater up, a down throw on my legs, a chenille blanket wrapped around my shoulders. I tried to knit, but when my hands started shaking, I decided to go to bed. So I went to bed with all my layers on, my hood up, and actually pulled the comforter up, which I never do because I'm always too hot at night (thanks, premature menopause). The only part of my body which was warm was my face, so I warmed my hands on it, which will probably do nothing whatsoever to help my acne.

After sleeping a few hours, I woke up burning and started pulling things off. I also started hallucinating and had this very bizarre and abstract idea that I was breathing in different units of a three-dimensional shape than what one normally breathes in, and that without being able to breathe out the non-normal shape, it would build up in my lungs, overwhelm the other shape, and I'd never cool down.

Yes, I hallucinate geometry. Having mathematician parents was destined to wreak havoc with my psyche eventually.

A cold washcloth turned out to be the antidote (to feeling hot, if not to math).

Labels: Brian, CT scan, Dad, IV, Lita, liver, mom

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No, this is not the Janet's Blog version of "a very special episode of [insert name of family sitcom here]."

The dry, winter air, combined perhaps with regularly being infused with Avastin (which can cause such side effects) has resulted in some fairly predictable nosebleeds. I learned from She's the Man that tampons are good for absorbing those unexpected nasal flows--or at least that was Amanda Bynes' justification for having them in her bag when she was supposed to be a boy.

Walking around with a rolled up cylinder of toilet paper in my nostril this morning (also last night), it suddenly occurred to me that I could have used my remaining box of Tampax Pearl to help my current situation, and it's a sad waste that I threw them out. Rolling up little wads of toilet paper is ok, but the toilet paper dissolves easily and then I'm left with dissolved bits of toilet paper clinging to my nostril and upper lip once the flow is staunched.

Brian has valiantly searched, but the humidifier--which got packed away for moving--eludes him. I have been using a nasal gel called "Ayr," but it can only reach so far. My cracked, Saharalike sinuses will not be soothed by half-measures and see fit to regularly release the red sea.

Blech.

Labels: Avastin, Brian

1 comments

For a while I've been marking cancerversaries. November 5: my surgery date. November 3: second bone scan and confirmation of metastatic disease. December: hospital stay. I don't think I will be able to forget and keep from feeling unease when late fall rolls around again, but a new marker of passing time is coming up.

February 25 will be Brian and my first wedding anniversary. I confess that when we got married, I was not entirely convinced that I would be seeing an anniversary, but I am thrilled and relieved to comment that my notion of impending doom was silly and that we will be seeing many more anniversaries.

February 14 will be my first Valentine's Day as a married person. April 13 is the anniversary of our first date (at La Shish...Brian rode his Harley for optimum impact). Spring is considered to be a time of renewal and rebirth. Usually this is represented by bunnies, tulips, and Cadbury eggs. I represent it by throwing off the shackles of my wheelchair, walker, and Fentanyl patches, and by celebrating what is good instead of being mired in what's miserable.

Labels: anniversary, bone scan, Brian, cancerversary, fentanyl, hospital, metastasis, motorcycle, surgery, walker, wedding, wheelchair

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The second infusion in this round of treatment did not result in dire gastrointestinal symptoms lasting for days. I suspected this would be the case when Brian started exhibiting the same symptoms I'd had (he's never been squeamish about taking care of me and has not ever shown signs of "sympathy pains") later in the week.

I felt a little bad about it--I didn't want to rejoice that he was feeling so crummy, but on the other hand,

w00t! Influenza! so much for my flu shot

Thank all that is holy. I feel fine today.

There is no word yet on what to do about my braces. I did have an orthodontic appointment Monday, at which I shared my concern about my teeth on Zometa with the orthodontist. He has not seen me very long (my original orthodontist moved to California), and has no basis for comparison regarding the movement of my teeth. He's not personally familiar with Zometa, so I gave him Lita's contact information. She's not personally familiar with braces. I don't know that they are going to be able to come to any conclusions and suspect it will be a matter of observation and slow decision-making. I am to return in four weeks and have "superchains" on my teeth right now rather than the usual "powerchains." I wonder if there is such a thing as "superdooperchains" or not. I might need them.

Labels: braces, Brian, chemo, Lita

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It was nice while it lasted.

I was the first patient Dr. Hayes and Lita tried to treat with just Avastin and Zometa, in the hope that my disease is stable enough to treat without my having to undergo chemotherapy. As mentioned in a previous post, the blood test results from two weeks ago indicated that there could be some tumor activity: one of the markers remained the same, but the other blipped up.

So I went in for my bone scan and CT scan last week, which is always a joy. I was not able to eat during the day because of my evening scan, and by the time I got home I was ravenous and more than a little insane with low-blood-sugar-induced anger. I was angry about being stuck at the hospital with nothing to do for three and a half hours because I wouldn't have had time to get home and back. I was angry about not being able to eat. I was angry about the fact that barium even exists at all and that they can't inject the contrast dye into my port (Lita says now there's a new kind called a "superport" that they can use for injecting the dye...I may consider asking to get mine replaced). I was angry about slow traffic, at the person who honked at me for not turning quickly enough into the Wendy's parking lot, at the slowness of the drive-thru. I was angry at Brian for keeping me company while eating. I was once again angry at barium when it decided to go on its voyage to porcelain heaven--all at once. I was angry at pretty much anything it occurred to me to think of or notice.

I got my results today.

The Good News

My bones appear completely stable. There was no progression of disease in my hip/spine/ribs, and Lita is not at all worried about undue risk of fracture.

What a difference a year makes.

The Bad News

The bad news is that the disease in my liver does show progression, and as of today, both tumor markers were up (the one which had gotten down to 16-point-something is now about 200). I resumed the Abraxane today and have every expectation that those markers will go down again to near-normal levels. If not, we lather, rinse, repeat with some other drug.

Alas, this also does mean I have to resume enduring Neupogen shots. :(

The Freaky News

Within the last year, they've started hearing about some kind of weird bone problem that happens with people on Zometa--in rare cases, part of the jawbone (and only the jawbone) actually dies, which can lead to exposed bone in the mouth.

Yuck.

They have not seen this before because in the past, breast cancer patients with stage IV disease didn't last very long and Zometa didn't exist. Now it does, and there are a lot more people living significantly longer. Lita stressed that this side-effect is rare, but I get a tightness in my chest when I hear people telling me about medical conditions I have a very small chance of experiencing. I've played those odds--several times--and keep on beating 'em. I have been instructed to make my orthodontist aware of the risk so that they can check for my jaw health at my regular appointments.

Great. All this money for braces only to have my lower jaw corrode away or fall off or whatever. That's just swell.

Labels: Abraxane, Avastin, barium, blood tests, bone scan, Brian, chemo, CT scan, Dr. Hayes, hospital, Lita, liver, metastasis, Neupogen, tumor marker, Zometa

2 comments

Brian got worried while processing nursing and oncology journals at work, and contacted Lita, who left a message for me to call her back.

My blood tests may warrant new scans after all.

I am seriously considering begging for some alternative to the CT scan, which involves drinking copious amounts of barium, a substance which is also famous for being used to give people enemas. It's nasty. The last time I got so icked out over the prospect of drinking it that I yakked into the waste basket in the doctor's office waiting area. I love it not.

Brian seemed to think Lita will want me to have scans before my next appointment in two weeks. On the one hand, I think one might as well be prompt about treating problems. On the other hand, I wish I didn't know about any of this and could spend the next two weeks feeling brazenly optimistic before the deflating: your break may be over.

I don't even know what she's going to say, but I imagine my tumor markers are creeping up and the wonky liver results are "of concern." Then the scans will show increased tumor activity and there will be some head-scratching over whether or not this is resumed activity or whether things had started to progress while I was still taking Abraxane.

I would imagine the next step is to try Abraxane again to see if it continues to beat back the invasion. If not, we switch to another therapy and hope it lasts long enough for science to come up with new alternatives when the current one fails. Luckily I still have several choices.

I wonder if the follicles on my scalp will again go nuts and begin flinging hair onto my shoulders and pillowcase. I wonder if my eyebrows will fall out again. I have five o'clock shadow at the inner corners and actually tweezed the other day. I will be sad to see those hard-earned hairs go.

Labels: Abraxane, baldness, barium, blood tests, bone scan, Brian, CT scan, eyebrows, hair, Lita, nausea

0 comments

Brian and I are now the proud owners of a three-bedroom condo practically across the street from where we live now. We have already:

• Removed the crappy spindles on the half-wall between the dining area and the kitchen.


• Removed wallpaper and put a first coat of paint on the walls in the master bedroom, engendering some achy backs and knees; I am never doing edging along the floor again.


• Gotten the Christmas tree over to the new condo. I feel like putting it up will be an important milestone.


• Had the carpets and ducts cleaned.


• Ordered new carpeting (berber) for the master bedroom to replace the existing crappy worn stuff.


• Recruited some people to help us move on the 26th (although anyone else is welcome to come).


• Acquired puppy gates (YES!).


• Picked out paint color which will go up when the rest of the crappy wallpaper comes down. There's some serious ugly on the walls right now--pics are coming soon.


• Anticipated conflict with the one neighbor who deems the area outside our new dining room as his/her garden--just wait until we inform them we would like to build a deck there.

I am thrilled to have a home that is not a rental property. I am very happy that we can paint and replace carpet and fixtures. I'm very psyched about the prospect of crown molding, and am hoping that it's not too difficult to install. A year ago I honestly did not think that signing a thirty-year mortgage and moving into a two-story home with a basement would ever be within my reach.

I have never been more happy to be wrong.

Labels: Brian, carpet, Christmas, Christmas tree, condominium, mortgage, neighbor, paint, pug, wallpaper

3 comments

During our weekend at Brian's parents house in Evart, Michigan, we thought it might be neat to go horseback riding. The weather was beautiful, and I thought there might be places out in the country that would support riding stables open to the public.

Brian's dad heroically called a bunch of places, and Brian called a bunch of places. It turns out that many stables that normally would have trail riding were closed either for the holiday or because it's hunting season.

I suppose it would suck to get shot at while out riding.

When Brian and I left on Saturday, we found ourselves on the western side of the state at the Double JJ, which did indeed have openings for a trail ride at 2:00 p.m. We arrived early and wandered around the "Back Forty" which is set up like an old western town complete with jail, souvenir shop, and saloon where you can get burgers and grilled cheese and fries and what not.

We lined up to climb the stairs of the mounting platform, and the ranch employees brought forth around 20 horses for all of the people riding that day. We were instructed to take the horse over to one of the watering troughs, then line up by the gate. Brian's horse, Speckles, was very thirsty and Brian couldn't get him away from the trough (later during the ride, we opted for the slower ride that was walking only...I will not say it was specifically out of deference to Brian's lack of experience--I'm tempted to, but it's just as well I didn't try to bounce the heck out of my gimpy hips on a trotting horse). There was some debate about my horse's name. Some of the employees call her Oatmeal. Others call her Vomit. She was sort of dappled beige, cream, and brown.

I guess it depends on how you feel about oatmeal.

I enjoyed the ride very much. We saw wild turkeys and did not encounter any hunters. The Double JJ has cattle drives where they actually teach you how to herd cattle.

This ride was important to me--back when I broke my hip, I remember emailing Sarah (Sarah and Danielle and I had talked about planning a trip to a "dude ranch" the previous summer) that I probably wouldn't be able to ride horses any more, and that the possibility of a dude ranch vacation wasn't looking good. Well, f*ck that. I can ride a horse; I don't see why I can't take any kind of vacation I want (money notwithstanding). I am very proud that I was able to get on the horse's back and that I could walk when I got off. Ok, I was a bit saddle sore, but that's normal.

Brian says he prefers his steel horse. That's fine, but I don't get to ride the steel horse by myself.

The Double JJ also has sled dogs; we spent some time feeding them doggie treats from a gumball machine bolted to a tree by their enclosure. There's an indoor water park, but we did not have bathing suits. As we ambled to the car, walking funny from the long ride, a wedding party showed up--the bridesmaids were carefully carrying their dresses and I think we saw the wedding dress arive. They (the people AND the dresses) were going to assemble in the dance hall for the ceremony. I wouldn't necessarily have wanted a western wedding, but it made me pretty happy that people were assembling to have fun and celebrate.

Labels: Brian, Danielle, Double JJ, Evart, hip, horses, Sarah, Thanksgiving, vacation, wedding

2 comments

First, let me apologize to those of you who read my blog via rss feed. I've switched to the new Google Beta version of Blogger. This in and of itself isn't really very important, except that now my blog posts can be tagged.

At first I thought I'd make general categories for my blog posts and have everything neatly organized, but then I started listing key terms like "nausea" and "hip" and "infusion" and "eyebrows" that appear in some posts but not others, and now the tags are just lists of descriptors that appear in each post (the term "Brian" appears most frequently, despite Brian's insistence that I don't mention him enough) and I've given up limiting the number of key terms I'm willing to use.

What is a pain for me is that I have to go in and list the keywords for each post manually. I've been doing it gradually because I have 89--now 90 blog posts to edit. What is a pain for you is that each time I edit one of these things, it appears to be showing up as a brand new blog post.

At least it does in my subscription on Bloglines.

So anyway, I'm sorry about the confusion, although this gives you a chance to re-read some pretty interesting posts from way back when without having to use the Internet Archive's Wayback Machine, which is currently the only way to view one of my favorites from when I was just discovering the wonders of the Internet (try 1998).

Hair Dreams

Last night in the course of my dreaming (something involving girl scouts and a flood and driving cars) I was utterly convinced that my long, thick chestnut brown hair needed to be put in a ponytail. I was actually getting somewhat frustrated, because my hair was so thick and silky that it kept slipping out of the ponytail holder and I had to try repeatedly.

It took me a while after I woke up to remember that I did not in fact have long, thick chestnut brown hair that could be put in a ponytail and that instead I look like a pasty eyebrowless gollem with an anemic sea urchin on its head. I don't think I look particularly good in a ponytail under the best of circumstances, so I guess the fact that I can't put my hair in one now is kind of pointless. I'm just tired of having to go through so much effort on a daily basis to look human. I am tired of painting the eyebrows on. I am tired of lining my eyes to simulate lashes or trying to use false lashes. I am tired of wearing detatchable hair.

Labels: blog, Brian, eyebrows, google, hair, rss

3 comments

I should probably state that the bus ride is over. I'm feeling mostly better.

I still have lots of congestion and am on some antibiotics and have also been extremely tired. I don't think the antibiotics I pleaded for last Tuesday are working well (let's just say that today I asked Brian to buy some cranberry juice in my desperation) and will try to call tomorrow.

My left eye itches and I feel a little achey. The apartment is too cold. My right hand is a little bit chafed and my left thumb is somewhat crushed from trying to knit with squeaky chenille.

My hair is stupid and I have acne. My right hip is giving me some twinges and I can't remember when I last changed the fentanyl patch.

My lower back is sore. I've been feeling some tightness under my left breast and naturally worry about it. I keep having to sneeze and the wires in my braces are getting too long and poke into the sides of my cheeks.

But I can't complain.

Labels: antibiotics, braces, Brian, fentanyl, hair, hip, infection, nausea, tired

0 comments

At my appointment this past Wednesday, Lita (my oncologist's nurse practitioner) told me that she had spoken at a conference in Chicago, where she mentioned me as an example of how well newer cancer treatments can work. I'm a case study!

Of course my name was not used, to protect my identity.

Dr. Hayes mentioned that he had recently had a conversation with Dr. Smith (the attending physician for the floor of the hospital where I spent the first two weeks of December), who was not at all certain that I'd turn out very well. "Oh, that poor lady," Dr. Smith took a dim view. I can imagine why he thought my case was dire: I was very, very ill in December, and tended to immediately vomit whenever he or his troupe of doctorlets came to visit me. I had what Lita describes as "the worst case of gastritis" she had ever seen, had a hip that broke as a result of metastatic disease, was undergoing radiation, and couldn't be moved without copious amounts of morphine.

What a very sad sack I was.

Well, things have turned around completely. Last weekend Brian and I went to visit my relatives in Cleveland, and not only was I able to stay on Aunt Barb's second floor (thanks for the hospitality, Aunt Barb), but I was able to show off my new, walker-free self to Grandma. "This is what physical therapy can do," I tried to tell her. Grandma is 93 and doesn't want to go to physical therapy. I can't say I blame her, but she does have exercises she could be doing at home. (Also, Grandma needs to wear her compression stockings. I highly recommend the toeless ones by Juzo...they included a little paper slipper that made them very easy for Brian to put them on my feet, after being shown how by the occupational therapist.) I was a little tired after walking back to the car from Jacob's Field on Friday, and walking around the Cleveland Zoo on Saturday definitely made me sore, but it was more the result of lots of walking after long inactivity, and nothing like the hip pain I experienced last year before being properly diagnosed.

Dr. Hayes also again mentioned the idea of taking a break from chemotherapy. I am more disposed to the idea this time. I will be undergoing more rounds of chemo and then in November will be re-scanned. If the downward trend on my lab results continues, and the tumors in my liver shrink further (to non-scary sizes: the largest is still around 4 centimeters), then I will be taken off Abraxane for as long as things appear to be ok. I will continue receiving Avastin and Zometa, which do not have the kind of side effects that chemotherapy does. I'm disappointed to have to continue going for infusions, but being able to grow my hair and stop getting Neupogen shots (which I've been weaseling out of having Brian give me) will be very nice. Lita called and left the latest lab results: the tumor marker which had gone down to 16.1 is now 15. The one which had gone down to 65 is now 45. (I will try to amend this with more accurate information when I get home.)

Now that things are going so well and that I am back at work full time, I've had a human resources snafu thrust upon me. I am very lucky in that my benefits allow me a very large number of "extended sick leave" hours at full pay. Unfortunately, I have only 20 of those hours remaining. I can use extended sick leave hours at half pay (which only contributes half to my retirement and benefits), or if I don't use extended sick leave hours at all for thirty days, they will be renewed to 1056 hours available.

However, those 1056 hours cannot be used for the same occurrence of an illness. Basically this means that in order to use the renewed extended sick leave hours, I have to develop some OTHER catastrophic medical situation aside from the chronic disease which for which I will be undergoing treatment for the rest of my life.

I could use my fifteen days of short term sick leave for my infusion appointments (these tend to take six hours or more) and other doctor's appointments. However, since I get infused roughly three times a month, within less than five months my sick leave will be gone for the year. Also, due to the library's interpretation of the university's Standard Practice Guide, taking three sick days per month could, in three months' time, give my supervisor (who, mercifully, is not interested in punative tracking of my schedule) grounds to write me up and fire me.

I could use my vacation time--which did not accrue while I was on extended sick leave--for my appointments, however I get only two vacation days per month and it hardly seems fair to deny me my vacation time in entirety because of a medical condition.

I could take time off without pay, which isn't appealing for the same reasons taking half-pay extended sick leave isn't a great option. Or I could rework my schedule to work longer hours on the other days of the week that I am not receiving medications intraveinously. Sure, that makes sense--let's have somebody on chemotherapy working longer hours to make up for it.

This is all patently ridiculous. I'm not a malingerer; I work hard and contribute positively to the library. I feel like I'm being punished for something utterly out of my control: I didn't choose to be afflicted by a chronic condition, and if I could magically stop going to as many appointments as I do, I'd be thrilled. However, there's nothing I can do about it, and I feel like the university's policy is designed to keep them from having to pay for somebody with a chronic illness.

Grounds for dispute under the Americans with Disabilities Act? I don't know.

Labels: Abraxane, Aunt Barb, Avastin, Brian, chemo, Cleveland, doctorlets, Dr. Hayes, Grandma, hip, Lita, liver, morphine, nausea, Neupogen, physical therapy, radiation, sick days, Zometa

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(Skip the vacation filler and proceed directly to the payoff.)

I opted, instead, to purchase a paint 'n' peel window decal kit, which consists of two black tubes of outline paint, and an assortment of translucent fill-in colors. The kit allows you to make your own "stained glass" style window decorations, which can be reused, as long as you store them on plastic sheets or keep them from accidentally folding up as they are impossible to unfold. (Alas, my poor butterfly decal decided to curl up and return to beeing a cocoon.)

The Toy Box is the best toy store I've ever been to. Each year on my vacation to Martha's Vineyard with my friend and college roommate Sarah and her roommate (and also my friend) Danielle, we make a point of stoping at this store to see what they have and possibly buy cool stuff. Last year I got a pirate hat and some hair beads. Sadly, I can't currently use the hair beads, but the pirate hat is good for any occasion, ARRRRR!

Around every corner there are neat and creative things. The rooms are irregularly shaped, the store is lacking in aisles, the passageways are cramped and overflowing, but everywhere there is something just begging to be picked up and tried out. Many of the doodads for sale have open samples that can be whirled, squeezed, prodded, flung, and generally examined. This store sells Breyer Horses, which is my personal litmus test for what makes a "good" toy store. It also has a fantastic costume collection, which makes me sad that I'm too big to fit the ballerina outfits and that it is no longer socially acceptable for me to go trick-or-treating.

There are all manner of games, including really cool ones that are unavailable at most chain toy stores. The stuffed animal selection was small, but mighty. There was this really great collection of woodland creatures that came in varying sizes and had plush stumps you could purchase to store your happy animals in. There were three different sizes of stumps and a beaver home, for each different size of stuffed animal--including a tiny stump with one hole and a carrying strap so you can carry around your favorite teeny critter. There was a three-hole stump so that three of your buddies could be carried at once together. The larger, vertical stumps did not have carrying straps that I could see, but for all I know they had backpack straps, or something. Too cute.

Anyway, just around the corner from those (and the wee hand-knitted finger puppets) were the craft supplies. I decided we needed to invest in some sort of craft to do, and was sorely tempted by the shrinkydink book. It had pages of blank shrinkydink medium so that you could trace patterns or design your own. Sadly, it did not come with suitable colored pencils or markers, and I didn't really want to buy colored pencils when I've got several hundred colored pencils at home.

Then I spotted the window peel-and-stick decal book, which fascinated me. I opted for a replacement kit, which included instructions, and the three of us proceeded to make colorful stained-glasslike window decals including a couple of snakes (inspired by the rollicking, if not exactly good, Snakes on a Plane), a bunch of grapes, a mermaid, and more.

I also had fun on my vacation going to the beach, visiting stores, going to Chicama Vineyards for a tour, eating mondo sandwiches from Humphreys, and generally tooling around the island in Sarah's very intrepid Hyundai. I got very sunburned at Longpoint beach despite repeated applications of sunscreen and learned that any number of my medications make me more susceptible to sunburn and that I probably should have kept my legs covered. I'm still itchy.

When I got home from the airport, Brian had a stuffed pug waiting for me in the car, and anniversary balloons and a card in celebration of our six-month anniversary. In a way I can't believe it's been that long, although in some ways it seems like so much has happened in the past year that we've packed several years in the space of one.

(The Payoff.)

I had an appointment with Dr. Hayes the Tuesday after I got back . These appointments have been very early, but I opt not to go to work on those days since I generally feel wiped out by the infusion (and probably also by getting up so damn early). Lita gave me the results of the CT and Bone scans, which Dr. Hayes reiterated when he came into the room. Both showed no new metastatic lesions, woohoo! The bone scan showed that there were improvements to the lower spine, a rear portion of one of the lower ribs (it did not say whether it was right or left), and the illiac joint, presumably in my right hip which was where the trouble all began. The CT scan showed that the lungs are improving and that the tumors in my liver (which, oddly, has continued to function normally this whole time) have shrunk to half the size. I was never told that the largest of the tumors had reached seven centimeters; Lita and Dr. Hayes only reassured me that the liver was functioning completely normally. Now that the largest of the tumors is down to three centimeters, I guess it's ok to let me know.

Brian knew about the alarming tumor size, but concealed it from me as well. This may explain some of his panic at my condition. I'm not sure how I feel about having medical things purposefully concealed from me, but I guess dwelling on the tumor sizes in an organ that's doing otherwise just fine is somewhat worrying about nothing. Livers are weird and very resilient, luckily for me.

Dr. Hayes then mentioned that if things continue to go the way they are going, I might want to consider taking a break from the chemotherapy. He said that some people who are doing relatively well and tolerating the treatments choose to stay on it. Those who choose to take a break from the chemo may have a reoccurrence of tumor activity, but when they start up the therapy again, this usually clears up quickly. Statistically there is no difference in the overall prognosis of both groups. For those few people who do not respond well when going back onto the chemotherapy, it's usually because they were starting to get worse before going on the break. Naturally Dr. Hayes does what he can to avoid this. In any case, I potentially have the choice before me and I'm not sure what to do.

Taking a "break" is frightening. I'm terrified more than anything else of getting brain mets, and what's to stop it from happening if I'm not being treated? Also, the last time I was on a break--granted, it was a year and a half long and I wasn't being closely monitored during that time--things went very badly for me and I ended up in a hospital bed with a badly fractured pelvis and one of the worst cases of gastritis Lita says she has ever seen.

On the other hand, I am sick and tired of feeling sick and tired. It often occurs to me that I will get to think about cancer every day for the rest of my life, which is not a happy thought. Maybe it would be nice to skip the infusions for now and just keep up with regular blood tests. Maybe I would feel less tired. Maybe the hot flashes would subside. Maybe I can spend some time growing my hair. (There seem to be a higher proportion of little stubbly greys on my head than there have ever been before, particularly on the left side, for some reason...I used to have only one or two. I don't know if growing my hair will actually make me happy; it might just make me feel old.)

Anyway, the next day I looked at the printed reports which included not only what Lita and Dr. Hayes had already gone through, but also had the latest blood test results. These include all kinds of baffling numbers about my blood chemistry, but also indicate the results of two specific tests of tumor markers in my blood. I don't have the actual reports in front of me, but when I saw the numbers and compared them to my last cumulative report, I had to rub my eyes and wonder if the decimal point was in the wrong place. On one of the tests I have gone from a high of 255 (in May, I think) to roughly around 150 for the previous test, and then the latest test shows the number 16.5. Normal is either 3 for non-smokers, or 5 for smokers.

I am amazed. I seem to be doing unbelievably well. My tumor counts are down, and my actual tumors are shrinking.

I didn't need to buy shrinkydinks after all because I'm carrying some around with me everywhere I go, albeit icky ones that nobody really wants to look at.

Labels: bone scan, Brian, chemo, CT scan, Dr. Hayes, hair, hip, hot flash, Lita, liver, lungs, Martha's Vineyard, pug, tired, toys, vacation

2 comments

Aside from the fact that the ball size is totally different and that I completely suck at bowling (the last time I bowled I received a score of 19, due only to the scorekeeper's accidentally counting three pins twice), whereas I have been known to once in a while eke out a victory in my annual Martha's Vineyard mini-golf game, the scoring is exactly the opposite.

In bowling, you want your score to be as high as possible with as many strikes as you can get. With mini-golf, you want your score to be low as it can be.

I have printouts from the hospital showing results of various blood tests--which they have to do before determining whether I'm healthy enough to receive this week's dose of chemotherapy--and the array of things monitored is dizzying. There are white blood cell counts, various chemical counts, red blood cell counts, tumor antigen counts, things related to liver function, and I have one sheet listing I-don't-even-know-what.

The two major numbers that I've been paying attention to are the white blood cell count and the tumor antigen count. You want to have a high enough white blood cell count to be able to fight off infection, otherwise they will not administer the chemotherapy because it is just too risky. If you can't bowl, they won't let you in the league. So Brian has been administering subcutaneous Neupogen shots at home (which is hysterically funny for anyone who knows how much I just love needles) the four days after my chemo treatment. So far it's been working. The tumor marker count is like your minigolf score: the lower, the better. On my sheet, it started out around 55 in November and reached a high of over 200 before starting to go down.

Anyway, Lita called the other day and told Brian we are to celebrate because the numbers are all going in the direction they should be (also, the test results show that my liver function is almost back to normal, but that doesn't fit into my stupid analogy). I don't know how the numbers compare right now to what is on the printouts, because Brian couldn't find the sheets and didn't write down what Lita told him.

I am cautiously optimistic about the tumor counts. I'm not sure it will ever be possible to make it under par, but lowering my score at all is a good thing.

Labels: blood tests, Brian, chemo, Lita, liver, Neupogen, tumor antigen, tumor marker, white blood cell

1 comments

This evening after we had gotten home from a hot evening of fishing and a side trip to Subway for some sandwiches, I noticed that there were two kids looking into our apartment through the front window. I thought it was a little strange before realizing that I had taken my hat and scarf off (it was too hot to wear a wig to go fishing), and when the kids saw me looking at them, they took off running and ran upstairs to the apartment on the second floor.

A little while later, they were back, again trying to peek inside.

I don't really know what to do about this. It's not really appropriate under any circumstances for people to be purposefully peeking in somebody's front window (Brian says they have done this before), and I wanted to perhaps try to talk to the mother about their behavior.

Brian suggested that 10 p.m. on a Saturday night might not be the best time to address this issue. I think he may be right.

Even under normal circumstances I wouldn't want to have somebody looking through my front window into my home. It's worse now, though, because home is the only place I really felt like I didn't have to conceal my loss of hair. But now apparently I do, and I shouldn't have to. I can understand kids having curiosity about the person who looks different or funny with no hair, but I shouldn't have to feel like I'm a freakshow.

We may try talking to the mother tomorrow morning; I don't know for sure. I don't know whether to bring up my circumstances or whether that would just make everyone feel worse than is necessary.

At this point, however, I'm less inclined to care about somebody else feeling bad than I am about myself. I have enough to worry about, and if somebody has to get embarrassed for me to feel better about being in my own home, then fine. Maybe they deserve it.

Labels: baldness, Brian, hair, hat, kids, scarf, wigs

3 comments

Since I tired of the perpetual rain of short hairs, and I tired of having the coat of hair removed from my pillow after each use, I asked Brian to buzz the rest of my hair the other night. Instead of looking like Smeagol, I now resemble a slightly pasty sea urchin.

Last week I went to a swanky wig store in Birmingham, Michigan and was fitted for two "cranial prosthetics." They gave me a sheet with step-by-step details on getting your insurance company to pay for your wigs. The first advice is to not call it a wig, but a "cranial prosthesis." My insurance company has informed me that wigs are not covered under my policy. The guide sheet points out that a wig is something worn for cosmetic purposes, whereas a cranial prosthesis is worn to cover hair lost due to medical reasons, and is no different from a prosthetic worn to replicate a breast lost due to medical reasons.

The first wig was supposed to be done in a week, but I have yet to hear from the wig lady. In the meantime I am wearing scarf/hat combos. Today I look rather like a gypsy. The stubbly hairs that are left are helping hold my green-blue silk scarf in place which my dad brought back from his trip to Thailand. I'm worried it will slip and fall off, revealing my new prison-inmate 'do.

I feel very conspicuous and weird, in any case. I seriously doubt a wig will fix that, since almost everyone around me will know it's a wig.

Oh well. Damned if I do, damned if I don't.

Labels: baldness, Brian, hair, hat, insurance, scarf, wigs

0 comments

Brian suggested the other day that my blog could actually be considered a boobliography. I had originally thought of calling it a Boob-log, but now I'm not so sure. What do you think? Would a boobliography be more like the list of breast-related resources at the right, or could this whole thing be considered one? Should I stay with my original impulse? Should I embrace change? I must know. Please send your comments.

Labels: blog, Brian

2 comments

So I opted for short hair. Brian and I went to a small hair styling place by Holiday Market and we both got haircuts. Even with the amount of hair that I've pulled out of my hairbrush in the last few days I was amazed at the amount of hair left on the floor. The woman cutting my hair was very sympathetic and avoided too much pulling or using the blow drier. The woman cutting Brian's hair insisted that according to some self-help guru, breast cancer can be cured with linseed oil.

Really, is that all it takes? Then what am I doing with this chemo nonsense?

Labels: Brian, chemo, hair

2 comments

I've been here before. I've been to a second dose of chemotherapy. The last time I had a second dose of chemotherapy I didn't suddenly have trouble breathing, have to have the treatment temporarily stopped, be given oxygen, and then have the treatment team paged.

Apparently Taxol can do that to you. I had some kind of reaction (which they assured me was not uncommon) and that I'd probably be fine and never have that reaction again. they gave me some benadryl to be on the safe side. It was very weird; it felt like my lungs just weren't working and my face turned beet red. I certainly hope it doesn't happen again; it delayed things and I ended up not getting out of there until after 6 p.m. I don't know why it is all of my appointments have to take so long.

The other day at Dr. Rodriguez's office, a patient showed up with a very demanding parent/guardian who insisted that the patient be seen despite not being in the system as having an appointment. We could hear the entire conversation through the walls, and I think his being there caused something of an uproar, disrupted the schedule, and I ended up being the last patient out of the office. Why? Why me? Do I need to be a squeakier wheel? Should I complain more? Should I loftily proclaim I will leave or threaten legal action if I'm not seen now? Those options aren't appealing; I think most people are just trying to do their jobs and don't want to be harangued. It's just that I'm getting a little tired of being passed over and having things run later than they ought.

My dose of 1 chemotherapy drug actually also involves a drug designed to inhibit new blood vessel growth (this is something tumors like to do...they nest somewhere and set up their own blood supply...little f#$%ers), which naturally have to be delivered separately. Then of course, to help with nausea, I am given some anti-nausea meds beforehand, two in pill form and one intraveinously, which delays the chemo. Then of course there are bags of saline to "flush" and since I had an episode, benadryl and more saline. Everything adds up to me sitting there forever. Blargh. I don't know what Brian did while I was sleeping. My mom had a book with her before she left for her yoga class.

Then of course the ride is long to get home. They are going to start offering infusions at the Canton health center, which will be much more convenient (I hope).

Labels: allergy, Avastin, Brian, chemo, Dr. Rodriguez, infusion, mom, nausea, Taxol

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After talking with Lita this past Friday, I feel slightly more at ease. Brian called her out of concern, and she gave me a call to find out how I was doing. Don't get me wrong--I'm still unhappy with having to be on chemotherapy again when I had hoped an alternative might work, and I have been rather weepy about my situation in general, but at least I'm no longer climbing the walls and have been able to sleep.

She reminded me that the chemo was something they had actually wanted to start with, but I was so sick in November when I first came to see Dr. Hayes that I wouldn't have been able to tolerate it. So they started hormone therapy to buy some time and did the radiation. Now that I'm stronger and feeling well, the time is good. The hope is to beat back the tumors and the chemo (combined with another drug that inhibits the growth of new blood vessels, which tumors tend to create to feed themselves) has the potential to shrink things so that they are undetectable. Of course there's no way to know if this will happen--it might not, in which case they'll try something else--but at least there's a chance. She doesn't expect my immune system to be compromised, and so far I haven't felt any nausea or other symptoms aside from some sinus pain and general digestive unrest.

It also occurred to me that I hadn't changed my fentanyl patch in something like four or five days. Lita made me promise to change it immediately--I was probably undergoing withdrawal, which can make people extremely agitated and restless. So I did, and sure enough, I feel more calm and have been able to rest. It's official: I'm hooked on little narcotic patches. I remember trying to give up caffeine one year for lent. I had terrible withdrawal headaches, but this feeling was so much worse.

Labels: Brian, chemo, Dr. Hayes, fentanyl, Lita

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My day lasted considerably longer than I wanted to and took a radically unexpected turn. I got to the Radiology department at 9:06 a.m. (only six minutes late), and got prepared to have a port installed to make the monthly infusions more bearable. I had anxiety about the port placement. Where would it be? Would it be very painful and awful? What would it be like afterwards? I was assured that the procedure would go smoothly, that people tend to not suffer much discomfort during the placement, and that I could discuss where it would be placed with the person doing the procedure and things would turn out ok.

I actually didn't feel much of the procedure at all. After giving me the sedative, the people in the room kept asking me questions about where I lived, and did I know about Holiday Market, and was I near the new Ikea? I remember that the local anesthetic shots stung quite a bit, and then I don't remember anything else until being wheeled into recovery. This was several hours later than expected, since there were two people who needed emergency procedures before I was even able to go in. So my mom had lunch while I was out of commission, and I had to get dressed and get to my other appointments. There was a wheelchair for me. I got in the wheelchair (which got us special privileges at Wendy's in the hospital) and had my first food of the day: nuggets and a small frosty. I looked at the tiny cup dolefully.

"If I had known the small was going to be that small, I would have opted for a medium."

Then I went to make my next appointment; the infusion that was scheduled at 2. I had totally missed my appointment with Dr. Hayes, but could make this one. As I was getting weighed in, I heard people in the waiting area calling a name I'm hardly used to: "Janet Elkins? Janet ELkins! Janet ELKINS?" I identified myself, and it turns out it was highly important to see the doctor before going in to have the infusion. There was a delay there as the four people at the check in desk neatly failed to help the line of people waiting and depended instead on the trainee being helped to do it. Every conversational remark she made to somebody ahead of me I begrudged. How dare she take time to trade pleasantries when there are people waiting? Grrrr...

Finally I got in to the docor's office and waited. And waited. And waited. My mom called Brian, who then took over the job of waiting with me. And we waited. Finally, Lita came in and had news to report which made it clear why seeing the doctor before going in to the infusion would be important. "While it certainly did at first," she said, "it looks like for whatever reason the hormonal treatment isn't working anymore." We would have to switch to another therapy. So today I started chemotherapy for the second time, which I have already prayed in this blog I would never have to do again, god willing.

God is apparently not very willing.

I finally got home at 10 p.m. Brian is eating ice cream. I'm typing in my blog with a very bruised arm covered with green...antiseptic, I think it is. My face is puffy from something. A side effect of the infusions? I didn't start weeping until after my left eye was already partially swollen shut so I don't know what's going on there.

My day was very long and this was an unpleasant surprise.

Labels: Brian, chemo, Dr. Hayes, hormone therapy, infusion, Lita, mom, port, surgery

2 comments

Barium tastes awful and has a hideous texture. It also gives me unrelenting gas. Please, do not ask me, "Which flavor would you like, berry or banana?" I would not like either flavor. Do not pretend you are doing me a favor by giving me a choice.

So today I went to get a nuclear shot, then I went to drink the barium (they made me feel bad that I wasn't able to drink enough, but really...the last time I went through this, I vomited their precious barium all over the floor in the scan room)--at which point Brian showed up--and have an i.v. jabbed into my arm, then I had the scan. Am I becoming allergic to the iodine? Either so, or they squirted me with an extra huge dose. I felt the familiar heat in my eyeballs and my groin (it's a side-effect of being squirted with iodine...you get hot as the stuff burns through your veins) but this time I felt like it was harder to breathe and my throat got hot and I got an awful taste in my mouth, and did I mention it seemed unusually hard to breathe? That can't be right...

After that Brian and I went back to the nuclear medicine waiting room and after a while I notified them that I was present. I slept while Brian waited with me and woke up when they came to give me the bone scan. The first stop was the bathroom, where I had gas from the barium and had extreme difficulty urinating as commanded. Firstly, I tend to not be able to urinate on command, and secondly it's been difficult for me for some reason lately. I'd suspect a mild UTI, but I'm too lazy to investigate. The bone scan was actually kind of peaceful, because it only required me to be still. I didn't have to worry about when to breathe or not breathe like with the CT scan.

On the way home, I am pleased to report that my route turned out to be faster than Brian's and/or more efficient. I took Fuller until it became Geddes to 123 to 14 to Ford road. Brian expected to be home and have his feet up by the time I got there but sweet, sweet victory was denied him as he walked in the door and there I was, toasting some Pop Tarts. Hee.

Labels: bone scan, Brian, CT scan

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This week I will be undergoing a new spate of tests including multiple CT scans and a comprehensive bone scan. This is actually good news: it is Dr. Hayes' opinion that since I am doing so much better now than I was in November when he first saw me, and he wants a new set of baseline tests.

Since I was doing so much better, I asked about whether or not it would be advisable to ride a motorcycle. I wanted to know specifically if the shaking engine would cause my pelvis to fall apart or if I might be ok given smooth roads and a careful rider at the controls.

His face contorted. "Weeeeeell," he said, "I don't want to tell you not to do it if it's something you really feel you want to do, but I'm a doctor and the consequences for you if the bike goes down are really bad."

We regarded each other.

"I won't tell you no, but all I'm saying is if you do, I don't want to know about it," he blurted.

I have since ridden behind Brian on his motorcycle twice, using the helmet that was specifically bought for me and which I'm pretty sure Brian won't want to use (due to the fact that it is pink). I am not graceful getting on and climbing off, but we are working on that and I'm sure I'll get better at it given practice.

Anyway, I have a spate of tests tomorrow, and next week will have a port inserted that will make it easier to draw blood and do the monthly infusion. I hate having an i.v. inserted almost more than anything. They have such difficulty getting the i.v. in the veins in my right arm/hand that when I have to have it done, it takes multiple tries, and is torturously painful. A port should make things easier, but getting the port inserted is some kind of surgery, and I'm nervous about it. Will they knock me out? I tend to react poorly to anesthesia. Will they try to sedate me but keep me conscious? That didn't work AT ALL during my liver biopsy, and the fentanyl patches might interfere with the kind of medication they want to use for that. I'm also slightly freaked out about having a tube in my arm at all times. It seems inhuman to have tubes and things winding their way around the interior of my body. Borg have tubes on the outside, but I can't help feeling that the process has begun.

After having my biological and technological distinctiveness added to the collective, I will immediately get to test out the new port by having my monthly infusion, because by that time they just won't have tortured me enough for one day. Then of course comes the monthly shot in the stomach, the one that renders me menopausal and is the cause of the hot flashes I've been suffering with some increase in frequency.

On the other hand, my acne has finally gone away. It could be my new skin care regimen, but it's probably the hormone therapy. My nausea also seems to finally be under control, although I have not regained my appetite for anything but sweets.

We are Borg; We demand your ice cream and leftover Easter candy.

Labels: bone scan, Brian, CT scan, Dr. Hayes, fentanyl, hormone therapy, hot flash, IV, liver, motorcycle, nausea, port, star trek

3 comments

Last tuesday the weight of everything that has been happening came crashing down in a crushing implosion of fear, doubt, panic, paranoia, and just plain terror. I recall watching a show wherein one of the people being interviewed made a random comment about her mom having lost her battle with breast cancer at age 45. Ordinarily I would not have associated myself with such a comment. I would have paused for a moment, thought to myself, "How sad. That must be difficult to deal with," and then moved on. This time I couldn't forget that maybe someday soon somebody will say that about me. Maybe they will speak of my "courage in the face of adversity," or some equally sentimental blather. Maybe they will be sad and choked up. I don't know.

What I do know is that my doctor had sent me to get a brain scan to see if I had any brain metastases, and I read earlier in the week a blog by somebody who had been suffering from brain mets and who was not doing well. "I'll bet you a hundred dollars now you don't have them," my doctor said, holding out his hand in a friendly wager.

I'm sorry, doctor, but I just don't believe such things anymore:

• "Oh, it's probably nothing."


• "You're so young; you have nothing to worry about."


• "Nine times out of ten these things are harmless, especially in people with your history."


• "After surgery and chemo, you're clear. You don't have anything to worry about."

If somebody tells me not to worry, I don't think it's going to happen. So Tuesday evening I was all stressed and began crying uncontrollably. This is something I hate doing because a) it tends to be contagious, and I hate it when Brian gets upset and b) It's just plain embarrassing to be out of control like that. I also threw up again for the first time in at least a week; I thought I had gotten over that. So with the sobbing and the worrying about the future, it suddenly occurred to me that I hadn't heard any results of the test.

"Surely they'd have called immediately if there had been anything bad," Brian said. True, but my paranoia was not about to be derailed by logic. So I sobbed some more. I asked for kleenex and tried to keep the tears from dripping into my ears. My pillow got exceedlingly soggy, and then I couldn't sleep. I kept sitting bolt upright and getting up to do something, anything. To go to the bathroom. To brush my hair. To look for something or organize a drawer. To brush my teeth. Again. By the early hours of the morning I was an utter basket case. I couldn't stand to be touched and Brian wanted to stay home for the day. I went to get my palm pilot and cell phone so I could call Lita first thing for the results.

Brian did go off to work, and I called Lita's office and left a very shaky, paniced message. A couple of hours later, one of the other nurses called me back to say that Lita was in clinic all morning and had asked her to go through her messages. Anyway, the tests had come back and they showed everything was normal.

I thanked her in a very broken voice, hung up the phone, and sobbed hysterically. Normal! Thank god...Thank you for not being so cruel as to have me beat the odds this time. After more weeping and worrying about the future, I suddenly realized that I have a prescription for xanax which says, "take one three times daily as needed for anxiety." Brother, do I have anxiety.

So I've added some xanax to my regimen, although I break them in half now because they make me very sleepy. I might have to stop them until the next crying jag, which I hope will not be for a long time, and which will not be precipitated by something quite so scary as brain mets.

Labels: anxiety, brain scan, Brian, Lita, Xanax

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This week I had the veritable motherlode of appointments. I had my usual blood draw/oncology team visit/infusion & pellet injection on Tuesday. I made sure to bring pictures of the wedding with me to show Lita, the Oncology nurse practitioner, who demanded them last time. (I also tossed in some of the wedding favors Brian's mom put together for her and Dr. Hayes.)

My mom picked me up, and they were running on time at the blood draw station, so I went in, had some tubes sucked out painlessly as possible (I love those people), and then came out to go to the next appointment. We went upstairs and waited for Brian. The check-in area was hectic, and there was about an hour to wait.

We did not get to go in early.

They called me to one of the rooms, and forty minutes later, Brian showed up. Finally, my mom decided she had to go, so she left and Brian and I waited some more. And we waited and waited. I chewed some gum. It lost its flavor, and still I waited. Finally Lita came in and checked how I was doing. I showed her the mini-album of pictures my mom put together and gave her the party favor. She was delighted with the candy, not having eaten lunch that day.

We talked about the nausea, and how that's really the only thing bothering me significantly at this point. We also talked about driving, and she suggested that physical therapy would be the place to address that issue, so I said I'd talk to Dr. Rodriguez (the physical medicine specialist) today about it. Then she took off to find Dr. Hayes and send him in.

We waited, and waited, and waited....

My gum lost its flavor, so I threw it away. I got cold and decided to put my shirt back on. I figured if the doctor wanted to use the stethescope, he didn't need me in a gown for that.

Finally he ducked in and asked if we'd seen Lita. Sure, uh, about an HOUR ago. He asked briefly how I was and then said he'd come back with her.

When they got back, and the doctor talked about how the "numbers are down" and that things are looking very good. He was talking about the presence of protein markers which indicate tumor activity: tumor activity is down, so I am getting healthier. He is a little bit concerned about the nausea, and ordered an MRI of the brain to rule out tumors there. "A hundred dollars on it being nothing," he said (or something like it.)

This makes me nervous. I have beaten stupider odds. But surely the universe would not do this to me again--that would just be cruel. They just have to rule it out. I hope they're ruling it out. "I'd stay and talk, but you're doing well and I need to go help the sick people," he said, and left.

So Lita suggested seeing if the MRI people I was going to see this morning could add another MRI.

I had to be at the hospital today at 5:30 a.m. Laugh uproariously, all ye who know how much of a morning person I am not.

They did add the other MRI, but it totally ruined my whole shtick about pretending to be a photon torpedo. They put stabilizer pads by my head and then affixed a thing that was more like The Man in the Iron Mask than Star Trek. It ruined my concentration and made me all tense. Then just as the test was beginning I suddenly realized I had totally forgotten to take my wedding band off. Was I wearing any metal? Duh....I thought for sure I had remembered everything. I could feel it buzzing to the MRI pulse and hoped that the machine wasn't going to explode or zap my ring finger off or anything like that.

The CT scan was over very quickly; it was just of the neck. The original CT and MRI scans were prescribed by Dr. Rodriguez, who wanted to investigate why I've been getting some numbness in my hands when my head turns a certain way. (I'm guessing "pinched nerve," but I'm not the doctor.) So after this morning, I had to go back to Ann Arbor in the afternoon to see her. She asked how I was, inquired about my movement, measuered my legs when I complained one feels shorter than the other, and wrote out a new prescription for physical therapy, suggested a driving evaluation when I asked about that, and told me that I can have an appointment with orthotist? Orthotician?

I have to get an orthotic wedge in my shoe. Sigh. At least this will help with the limping. I guess a wedge is better than having to get orthopedic shoes. My mom had to wear those when she was younger and the result was a woman with a full-blown shoe fetish that has yet to wane.

Labels: brain scan, Brian, CT scan, Dr. Hayes, Dr. Rodriguez, infusion, injection, Lita, mom, MRI, nausea, physical therapy, star trek, tumor marker, wedding

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I've tried at least four different kinds of medication to deal with nausea, hoping with each switch to find that magic thing that will keep me from spewing the contents of my stomach everywhere, or from dry-heaving the lack of contents until I can't do anything besides gag, shaking, over whatever receptacle was close enough to get to, if I was lucky enough to get to one.

I have actually made food choices based on what things will taste like coming back up. I'm worried that I will develop dislikes of foods I had previously enjoyed because I've thrown them up. I adore spinach dip, but there's nothing quite like picking spinach out of your braces...twice.

This latest medication does a fairly good job at keeping me from feeling nauseous, until the actual moment is upon me, and the maddening thing is that I haven't figured out what the triggers are for sure. I don't know why I'll be feeling fine one day and then suddenly the next, bleahrgh....

• I experienced one awful day on mine and Brian's honeymoon. It was the day after the very hectic Late Show/Spamalot combo. The next day I was so pukey ill I couldn't eat anything or get out of bed.


• Last Sunday I went to visit my mom's, something I hadn't done since Thanksgiving. I was nervous about the steps, but felt that I could handle it and was very glad to see Skippy, her very bulky chihuahua. Monday I felt horrible and couldn't keep anything down.


• Thursday I had a very busy day going to the dentist and various banks and offices, making official name changes and what not to Janet L. Elkins, and Friday I was miserably ill again.

Is it just activity level and stress? How on earth am I going to be able to control that? Sigh. Being able to wear smaller clothes is nice and all, but I need to be able to retain nutrients and things that will help me feel better. I've been advised to get a juicer. Does anyone have experience with those things? Will drinking lots of fresh juices make me healthy and give me unparalleled bushy eyebrows? Maybe my system won't like nutrition in juice form and will just spew it up again. Then I'll have invested money in a contraption that takes up space and is useless, rather like the pile of prescriptions in my medicine cabinet which have been tried, and rejected as just not performing well.

Labels: Brian, dentist, mom, nausea, Skippy, Thanksgiving

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I am extremely tired after the goings-on yesterday. I love more people and told more people I'd never met before how glad I was to see them, and it was true.

I was very happy to have help getting dressed and would like to thank the bridesmaids for being there. I think everybody looked great in their impractical dresses requiring complicated underwear, and think that anybody who agrees to such a duty deserves every amount of kudo possible. I'd like to thank Maria, particularly for marshalling people and getting everyone there in good order and for holding the bouquet at a crucial moment in the ceremony. I'd like to thank Wendy for helping me with the scary elevator; I was afraid the metal accordion-style door thing was going to crush her. I'd like to thank Melissa for being the photographer and helping to organize the group pictures. And I'd like to thank Sarah, who went on with the show despite not being able to attend the rehearsal and for being my witness (sorry I didn't tell you about this blog sooner).

I'd also like to thank the flower girl, Olivia, for doing a great job walking down the aisle, and who provided no small amount of entertainment value afterwards. I hope you like your flower-wreath headpiece.

It's Brian's job to thank the groomsmen, but I'd like to thank them too, especially my brother John, who doesn't know Brian very well but who agreed to participate. You are the best big brother anyone could ever ask for.

I'd like to thank Brian's brother Todd for delivering a very lovely, and mercifully brief ceremony, despite making me cry with the "in sickness and in health" part. If I could go back in time and change anything, I'd have stuffed a handkerchief somewhere about my person.

Thank you, Dad, for walking me down the aisle. I did not imagine I would ever have occasion to do such a thing, and am extremely grateful that you could be here to walk with me.

The table favors were perfect and included two pieces of Brian's favorite candy, Ferrero Rochet, and a small box of my favorite candy, the best candy in the world, hee hee. Brian's mom put them together, and I'd like to thank her not only for making sure they were sweet-tasting, but that they looked very sweet as well.

Finally, I'd like to thank my mom for arranging the whole event with perhaps less input from me than was helpful. I confess disinterest in invitation ink color and I am fearful of calling places for prices. Much of the planning went on while I was hospitalized, and the thought of planning tended to shoot my anxiety level to nausea-indusing heights. Through events yesterday my mom remained calm. I think what touched me most, however, is that when I got home from the rehearsal the other night, I came home and found my walker decorated with shiny irridescent fabric and beaded ribbon. It was funny and touching and kind of puts me in mind of what I must have been like in my own dress--I'm a little bit gimpy and broken, but anything can look pretty when dressed up for a wedding.

Also, the mashed potato bar and baby roast beef sandwiches at the reception were a big hit; I believe my enthusiasm regarding the food was vindicated. (Whenever I went on and got excited about the mashed potato bar that was going to be at the reception--you got your choice of regular or sweet potato with whatever fixins' you wanted--people would tell me, "uh, ok.".)

The cutting of the cake did not involve smashing pastry into any bodily orifices other than the mouth. I'm sure it was an accident that some icing fell into my extremely prominent cleavage.

Labels: anxiety, Brian, Dad, John, Junior Mints, Maria, Melissa, mom, nausea, Olivia, Sarah, Todd, walker, wedding, Wendy

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I did indeed get tickets to see Spamalot; I ordered the tickets through a website that has a special option for acquiring wheelchair-accessible seating. I won't have to try to maneuver balcony steps in the dark with a walker and struggle over other people to get to a seat in the middle of a row. I am very excited about this.

Brian also received a message from a gentleman named Brad from The Late Show with David Letterman. So Brian asked me to call the number (Brian is not really able to take calls while at work) and suggested I have Google ready when Brad calls back because getting tickets involves answering a trivia question.

I called and left a message, and blurted something about next week being my honeymoon (it doesn't hurt to provide human interest...or to wheedle, as the case may be). Brad actually did call back regarding the Late Show tickets, the end result of the conversation being...Brian and I will be in the audience at The Late Show with David Letterman on the same day we are going to see Spamalot ! Set yo' VCRs, my peeps.

Labels: Brian, honeymoon, Late Show, wheelchair

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It's two days before my wedding, I'm still fighting nausea, and there's an awful lot of backstory to cover.

I discovered in the hospital that you can't depend on the caregivers to necessarily give the best care, whatever their intentions. It is vitally important to keep track of your own treatment and to speak up if something doesn't seem right.

Unfortunately, many of the things that don't seem right are just a natural result of being ill or damaged. I started suffering ungodly muscle spasms, particularly at night. You know how when you fall asleep, sometimes your body does that all-over jerk that feels like you've just fallen from mid-air? Or sometimes it feels like electricity, or like all of your muscles just have to tighten all at once. It's involuntary, and usually harmless, but with my hip fracture, it was unbearably painful.

I also had a huge amount of nausea, which seemed to be made worse by anxiety. Every time the attending doctor and his little doctorlets came by, I felt ill. When my mom wanted to talk about wedding invitations--what kind of print, wording, whether to say "the parents of" or have them be from Brian and me--I felt queasy. When anybody talked about possible discharge from the hospital, I became ill. Where was I going to go? I couldn't imagine going back to the second-story apartment in Westland. But what else could I do? Brian began searching for other apartments, and looking at options also made me feel queasy.

At this point, I began physical therapy. I was on some level glad to be getting out of that torturous hospital device they call a "bed" and beginning the process of becoming something that wasn't an immobile lump of protoplasm, although actually having to do it was painful, difficult, tiring, and also caused nausea. Sitting up for long was difficult at first, but at least I did know--from previous experience--that it would pass and that getting up and moving around would ultimately be good for me. The physical therapist would show up, bring a walker, and have me try to get out of bed and move around. First it was three feet away from the bed and back. Then it was to the door and back. Then it was through the door, across the hall and back. Each time my jaunts got successively longer, and she recommended--as an alternative to going home or going into an "assistive care facility" (read: "nursing home")--that I be admitted to the intensive rehabilitation unit on the same floor of the hospital. I would do physical and occupational therapy twice a day.

So I moved to the room where I would spend my Christmas.

On my first day of occupational therapy, I was measured for compression stockings and given a set of adaptive equipment of the kind they gave to Grandma when she had her hip injury several years ago. I too got the sock put-er on-er, the grippy thing, the giant shoe horn, the pants hook. I'm not sure if Grandma also got the leg loop (it looks like one of those "invisible dog" leashes) or not; I found mine to be incredibly helpful for moving my legs onto and off of the bed.

Physical therapy consisted of walking for longer and longer distances using the walker (but putting no weight on the right foot), doing leg exercises on the mat, and occasionally doing arm strengthening using the pulleys or fulcrum weights. They also taught skills like stepping up onto a curb using a walker, sitting down in a car seat from either a wheelchair or a walker, and using a crutch to go up and down stairs.

I had too much anxiety to do the stairs. I was just too worried about my hips crumpling like phyllo pastry, and the therapists didn't press me.

Occupational therapy consisted of getting me dressed and showered in the mornings, and in the afternoon doing a combination of eye-hand coordination activities, some arm strengthening activities, and some arts and crafts. I saw people making these rubber mats with the Michigan M and when offered the tubs of colored rubber tiles, decided I would try to get creative and make an aquatic scene. The therapist was getting visibly impatient with me (she wanted to clear space off the counter) and I couldn't spend as much time planning my picture as I wanted, so I had to do a fairly rudimentary scene with two fish, gravel, some plants, and two different colors of blue to indicate the depth of the water.

Nobody told me it was going to be a doormat. If I'd known, as I told one of the substitute therapists on the Christmas break, I would have planned the picture to be horizontally aligned...as it was, they must have thought I was either mentally deranged or just really careless.

The other therapist turned it sideways the way I had planned it. "Oh hey, that's actually pretty cute!"

Labels: anxiety, Brian, doctorlets, Grandma, hip, hospital, mom, nausea, physical therapy, spasms, stairs, walker, wedding, wheelchair

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The Food Network (I am enjoying the novelty of cable very much) declared this past weekend to be devoted to chocolate and luuuuuuuv. There were specials on cooking with chocolate, making various confections, the history of chocolate, a chocolate sculpture competition, a wedding cake competition, a very odd segment in which some quirky dude blindfolded people and had them taste unusual items dipped in melted chocolate from one of those new chocolate fountains (oddly, people liked the chocolate-covered cheese puff, and the chocolate-covered carrot wasn't that bad...nay on the chocolate-dipped cheddar cheese, however), most of which I saw multiple times. I've clearly been watching too much of this channel as events will prove, and actually found myself announcing to Brian exactly why I was following particular steps in my cooking this evening.

"Now I'm coating each granule with butter before adding the stock..."

Yes, I cooked for the first time in many months tonight. I intended to do it all myself, but became completely exhausted and had help for the final stages, but am happy and proud to have been able to do something nice for Brian, who's been working very hard to keep me well-fed, despite the challenges (more on that later).

I don't have very many dishes in my repertoire, but one I particularly like involves couscous with toasted pine nuts and chicken with a savory tomato-vegetable sauce adapted from a recipe for something called "chicken provençal" in my cookbook. I tend to use more garlic than required and have nixed the anchovies and olives. It contains onion, garlic, zucchini, eggplant, diced tomato, chicken broth, extra tomato paste or sauce, all simmered together. The chicken is dredged in salted & peppered flour then pan-seared and finally finished up in the vegetable mix. The couscous is cooked with chicken broth instead of water to which a pinch of cinnamon and coriander have been added. The secret ingredient seems to be the pinch of cayenne pepper in the vegetables. The whole thing is very savory and spicy.

We went shopping for ingredients yesterday at Meijer, where I tooled around in one of those motorized scooters. I managed not to run anybody over and was getting really good at making three-point 180 turns. At the store I went a little nuts and started tossing swanky cheeses into my basket. Strawberries. A giant bag of chocolate chips. A French baguette. Crackers.

When the gentleman arrived home from work, there was a platter of various cheeses and fruits, including camembert (a less bitter cousin of Brie and one of my favorites), double gloucester, and some kind of white cheese that had cranberries in it. I also had grapes and strawberries on the tray, some pistachios, and a wine glass filled with apple slices. I also made up a few appetizers consisting of a bread round, slice of camembert, apple slice, drizzled with balsamic vinegar. I regret not having taken a picture of the cheese tray, but we did have presence of mind to photograph the dessert, which was chocolate covered strawberries, which I made this morning.

They were served on a chocolate heart-shaped plate which I sculpted from the leftover melted chocolate and put in the freezer on a telephone book to keep its shape.

The Food Network is creating a monster.

The double-boiler which melted the chocolate, the appetizer plates, the wine glasses, and the beautiful flower centerpiece were gifts from my wedding shower, which took place this past Sunday, thrown by my friends Robyn and Lori. Robyn, as I have often said to people, is a devotée of Martha Stewart. Robyn has impeccable taste and is very good at hosting events and putting together all manner of party things. Foods. Centerpieces. It's really quite amazing.

So the two of them threw of lovely luncheon at The Dearborn Inn, to which a small group of friends and coworkers was invited. There were incredibly delicious sandwiches, there was cake (I have been breakfasting on cake leftovers), there were gifts which will necessitate thank-you notes before I forget who gave me what. I've been having a stupidly great time picking registry things; I tried to be practical, but then was talked into asking for bone china, stemware, flatware, and serving pieces by Robyn, who kept insisting, "Are you sure you don't want to sign up for some Waterford crystal or some Lenox china?" My favorite gift was the 3-tier serving tray which I envision using for high tea. I will need to be sure to invite Robyn and Lori for cucumber sandwiches some day soon. Brian was invited to the shower, which he attended with great aplomb, despite his personal preference to be doing almost anything else.

Saturday was equally devoted to girly things as I desperately wanted to go get my hair done at the Mall. I had decided I wanted drastic highlights, which made the whole affair take longer. Then I needed to consult with the stylist about what to do with hair for the wedding since I won't be able to have somebody do it for me. She suggested hot rollers. I have since acquired hot rollers and a wet/dry straightener. (I've also been watching too many makeover shows courtesy of cable as well.)

I am unappologetic about doing frivolous things for myself; this is the first week in a long time I have actually not spent any time vomiting. I am no longer taking MS Contin, which made me unbearably ill. The constant nausea has made keeping me fed and hydrated very difficult. Brian had been trying to tempt me by listing multiple food options in the hopes of finding something that did not repulse me, but having foods listed to me seemed to bring on the nausea. I have tried multiple medications including Zofran, Tigan, and now Anzimet (which, to those without insurance, costs $9,000 for a month's supply). I had been vomiting at least once per week; the last time was at Sears shortly after my last bridal gown fitting. What if the food at the reception bothers me and I yak all over my wedding dress?

Now I feel like that won't be a problem; I'm so relieved.

I am finding other things easier, and yet have new aches and pains which always frighten me. Walking is getting easier; I am beginning to wonder if it might be possible to use the walker only as a backup for going down the aisle. Maybe my dad will be able to bolster me enough without it...I don't know and might be too frightened of falling to try. My hands suddenly hurt more than they ever have before and opening jars is uncomfortable and my fingers are noticably stiff. Is it the arthritis-like ailment of which takers of Arimidex complain? Is it lesions on the bones in my hands? Is this pain in my side a result of stretching funny or are the bones cracked here like they are in my pelvis? Will I ever know how damaged my skeleton is, and are there things I should be doing (or things I should be avoiding) to keep it from collapsing like a crushed can?

I have an appointment with Dr. Hayes next week. Should I wait, or should I ask about my symptoms before then? I never know. Honestly, I'm hesitant to bring it up with Lita, because she will schedule me for more medical tests and appointments right away.

In the meantime, I will watch more cable to take my mind off things, eat some leftover cake, and admire how even something as pedestrian as Crystal Light can taste really good when taken in wafer-thin glass stemware.

Labels: Brian, chocolate, cooking, Dr. Hayes, hair, hip, Lita, Lori, nausea, Robyn, shower curtain, walker, wedding

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Brian contacted Lita to let her know what was going on and that getting to my radiation appointments was going to be a problem. She wanted to get me admitted to the care of radiation oncology, but to do that I'd need to come through the Emergency Room at U of M since the prospect of doing any normal kind of transportation was out of the question.

The trouble with my Westland apartment is that Westland is smack dab in the middle of Oakwood hospital territory. Local ambulances were going to want to take me somewhere nearby. EMS people who normally deliver to U of M are not going to want to travel all the way to Westland to pick somebody up. After no small amount of calling different EMS companies, Brian found one that was willing to go out of the way.

The EMS people came and discussed how to get me out of the apartment, and ended up getting help from the local fire department. The trick was going to be moving me over onto the body board, which didn't quite fit around the corner from the bedroom to the hallway, so they were going to have to tilt it sideways. (They did a draft run before loading me up.) The other problem was that I was completely unable to scootch myself over from the bed to the board, so they were going to have to manhandle me over. There was some discussion about whether or not to just take the sheets, which caused me to panic unreasonably since I love those sheets, which have a very high thread count. Finally I think they got a sheet of their own and jiggled me on one side then the other (not pleasant), and then moved me on the heave of three, which was awful, I saw stars, and whimpered from the agony.

Agony. It's a word I will probably use a lot. I think it might come across as hyperbole, but I do not exaggerate.

Being tilted sideways was not only painful, but it was frightening as well. I was strapped down fairly well, but couldn't help worrying that I would fall off the board. The EMS people tried fairly hard to keep me level on the stairs, which I appreciated, and when we got outside they were able to move me to a stretcher. It was snowing, and I thought of the poem recited by Joy Gresham in Shadowlands where she talks about soldiers seeing "..with unwounded eye/For once a gentle thing/Fall from the sky."

In the emergency van they hooked me up, loaded me with drugs to keep me from feeling too much during the trip, and took me to Ann Arbor.

I think I was probably in the Emergency area for a long time, but I don't really know. What I remember most is having to go to be X-rayed, where I felt that the technicians wanted to cause me unreasonable pain. In order to get good films of my hip, they tried to do a "through-shot" which involved lifting one leg and trying to take the X-ray under the leg. Brian had to help hold the leg up, since I just couldn't do it. Then they decided that wasn't good enough and insisted I be turned on my side. I insisted they not do it, but I lost out. When they turned me, I actually screamed. I decided X-rays were bad, tests were bad, and I didn't want to ever have any more. Moving to and from the X-ray table and the transport gurney were also bad. It seems to be impossible for four to six people to keep legs and hips and shoulders and everything else lined up while moving a body. To somebody with a broken pelvis, this means that being moved is going to cause hideous pain.

After deciding, "yup, she has a broken pelvis" and "yup, she can't get around without severe assistance" and "yup, her vitals are a bit screwey and need to be watched," I was admitted to the hospital proper. At this point, more tests were warranted since I had abdominal tenderness, and the doctors were concerned I might be in the midst of some kind of spleen/gallbladder issue, so they wanted to send me down for an ultrasound, at which point I began to cry, which hurt my hip.

The nurse was livid, and told me I didn't have to go if I didn't want to. She told the doctors so.

I don't have to go? Cool! So I refused to let them transport me--which I had already decided was evil and unbearably painful, what with being tossed around like a sack of potatoes--for something I wasn't convinced I had.

So the doctors came to me and said the test was vitally important, and they had a portable scanner they could use.

If they had a portable scanner, why couldn't they propose using that on someone who finds moving to be insupportibly agonizing? Grrrrr... Incidentally, when they did bring the portable scanner (which the technicians complained about no end--apparently it doesn't do everything automatically like their shiny new stationary equipment down in the ultrasound area; poor babies), they had another stop on my floor anyway.

Having the test required no food or drink, which led to my next lesson in Life in the Hospital: shift changes can result in some incredible stupidity.

To be continued...

Labels: Brian, EMS, hip, hospital, Lita, radiation, ultrasound, Westland, x-rays

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So much has happened in the time since my last post. I regret not having been able to chronicle things as they occurred. At this point I think most of the three or so people who read this blog are up to date, but I will try to reconstruct events (to the best of my ability) after the fact.

After my less-than-delightful news about the cause of my joint pain (which just had to be delivered by the incredibly condescending doctor whom I have since given several bad ratings in a mail survey sent to me by Oakwood Westland Family Practice), I intended to soldier on and go about my business. I contacted the University of Michigan Cancer Center, and was told that I would have to supply them with all of the conceivable medical records relating to my initial cancer diagnosis. Slides, mammograms, X-rays, scans, pathology reports, everything.

I was unable to do much of anything besides make phone calls; Brian did most of the collecting. He went to various hospitals and gathered piles of films and scans and CDs. He tried looking at them too, but to a lay person they don't make much sense. The Cancer Center called and said I had an appointment with Dr. Daniel Hayes on November 29. I met the doctor and Lita, his nurse practitioner who both seemed very kind and yet somewhat disquieting. Nobody asked the really dangerous questions, and nobody seemed inclined to provide answers to what remained unasked: how bad is it? How long do I have? What's the prognosis? Will I get better?

What they did do is start setting up appointments like gangbusters. I was to come back the next day to meet with the orthopedic surgeon to find out if surgery would be required for my hip. I was to have the first of my monthly infusions of a bone-strengthening drug and the first injection of the pellet which has by now completely shut down my ovaries (there will not be the pitter-patter of little feet in my future unless the little feet are attached to a puppy), and I was to meet with the radiation oncologist to get "measured" for the radiation treatments.

The next day I was back at the medical center being wheeled around. Good news from the surgeon: no surgery. It wouldn't really help at this point, and radiation would be of more benefit. The infusion was unpleasant, as they always are; the iv lady couldn't get the iv started and after several failed attempts had to get somebody else to do it. The giant needle used to insert the pellet hurt like a m***** f*****. When they say "You might feel a little sting," be prepared for the PAIN.

Finally I went to meet the radiation oncologist, who was oddly smiley, and the radiation people put me on the table, made some marks on my body, and then said something which sounded disturbingly like, "Ok, now we're going to do the tattoos."

"Is that really necessary?" I said. I'd had it with being stabbed for one day.

It wasn't. They were able to make do with stickers, so I avoided acquiring permanent markings as a sign of my treatment. (I did eventually get something of a radiation burn on some very private areas--and suffered some rather interesting hair loss--but the rash went away and I assume the hair will eventually grow back. If not, I'll forever be able to save money on the kind of bikini wax job people pay good money for.)

Sitting up from the table, I started to feel very ill...I am extremely familiar with nausea and started having that extreme saliva production that heralds the onset of, well, the puking. Somebody grabbed a pink tray for me, and I spewed into that for a moment. Of course the involuntary spasms caused no small amount of agony in my hip.

Later that evening, getting into the car, I had trouble turning on my good foot and accidentally put my full weight on the injured side.

Agony.

Every bump in the road compounded it.

Getting out of the car took forever.

Getting up the steps was one of the hardest and most painful things I've ever done; putting any weight at all on my right leg caused horrible, excruciating pain. Dangling the leg and putting no weight on it caused similar, but different pain. Every time I was able to hoist myself onto the next step, my right foot would tap the step as well, causing more agony. About halfway up the staircase I started to feel like my left hip was snapping apart as well. I don't know how I finally made it; Brian tried to help but lifting under my arms didn't work either. I eventually made it onto the landing and it took about a half an hour to go from the front door to the bathroom. From there I went to bed, where I planned to stay the next day.

Before leaving for work the next morning, Brian made sure I would have pills and water nearby, and that I'd have access to a phone. When I woke up and attempted to get out of bed, I was made painfully aware that I was not going to be able to do so. I couldn't get out of bed, much less cross the hall to go to the bathroom or make it down the stairs to any of my radiation appointments. I called Brian and left a message; Brian called Lita and started planning how to get me admitted to UM Hospital's Emergency Room.

To be continued...

Labels: blog, Brian, Dr. Hayes, hip, infusion, IV, Lita, nausea, Oakwood, radiation, spasms, University of Michigan Cancer Center, Zometa

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Will I start to feel better soon?

Will the new pain medication keep from making me ill so that I don't have to worry that the involuntary muscular spasms from heaving the remnants of last night's dinner and this morning's dose of medication into the sink will cause my hip agonizing pain?

Will I give up trying to go up and down the stairs altogether? I thought about cancelling the PET scan today because everything is so hard. I did actually cancel my first appointment for today and sent my mom instead to pick up a new prescription for oxycontin, which gives me something in common with Rush Limbaugh, who also got people to get his drugs for him. Getting down the stairs and into the car was hard. Luckily the hospital has wheelchairs, but they had to move me several times. First they loaded me into a chair in the scanner trailer (sort of like the one I thought was going to take me to Iowa for weird medical testing in some corn field), then they made me get out of the chair and use the little peoples' room (apparently the isotope collects in the bladder and obscures what they are trying to image), then load me onto a narrow table. After they were done, there was an ER nurse to help move me back onto the wheelchair.

I wonder what they saw in the image to go get a nurse.

I wonder how fragile the damaged bits really are. Brian wonders this, too. He said he looked at the ex-rays today but doesn't really know what it means because nobody has explained them.

The reason people shy away from asking things is that they are afraid of the answers. This I understand.

Labels: Brian, hip, hospital, PET scan, spasms, stairs, wheelchair, x-rays

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I am getting better at maneuvering with the crutches they gave me at the ER.

Thursday evening I had an appointment with Oncologist #2, Dr. Khan. Because of my extreme gimpiness, I did not have to step onto the scale (let's all be thankful for small favors), the office staff felt very sorry for me and gave me a script for a wheelchair, and somebody in the waiting room who just happens to work at Oakwood hospital in the records department told Brian she would personally make sure that the films would all be arranged for me.

Friday I received a call from somebody at Oakwood named Amy who said the films were all arranged and ready for pickup. She also noticed that I had some tests done at Oakwood Annapolis hospital and wondered if I needed anything done with those. "Yes, I need those too," I told her. She said she would take care of everything and 20 minutes later called me back to say the Annapolis films would be ready Monday.

Wow. Sometimes these people can be on the ball.

I have also called Bon Secours to get slides from the Pathology department, and still have yet to contact anyone there about the films.

Today Brian picked up a stool for the shower (something else I have in common with Grandma), and it's so nice to feel clean! I think I'd like a hand-held shower nozzle better that what we've got right now, but being able to wash my hair at all was wonderful. I'm ready for my closeup--I even put on some makeup today--and I already know my line:

God bless us, every one!

Labels: Brian, crutches, Dr. Khan, Grandma, hair, Oakwood, wheelchair

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I'm about the same height. We both wear size seven shoes. We both take lots of medications. Both of us are currently having some trouble getting around, and neither of us is going to be completing our Olympic floor exercise routine any time soon. I think I inherited Grandma's forehead. We both really dislike physical therapy. I collect dolls like Grandma does. And I fully confess I got the idea of decorating my Christmas tree in white and gold from Grandma, who did it first.

I have a broken hip, now, too.

My fall the other day put a fracture in one of the weakened areas of my pelvis. I called my pain management/physical medicine doctor (Dr. Nadjarian) this morning, who stopped short of calling me an idiot and insisted I come in for ex-rays at the emergency center that's downstairs from his office. He told me to call a cab.

I was leery, but the cab dude turned out to be very nice. He helped me to the car and turned out to be a huge proponent of librarians. In fact, he used to have a job selling books to librarians. "Those librarians can be crazy to hang out with," he said. "They get pretty wild." I commented that I think librarians tend to feel compelled to rebel against the stereotype.

"It's true," he agreed, then went on an impassioned diatribe about how libraries are not sanctified spaces of higher learning any more and he gets so angry when he sees "these kids today" yakking on their cell phones at the library. I hear ya, mister.

After a brief and confused trip upstairs, I was made to understand that I should check in at the emergency desk downstairs to be evaluated by the ER doctor. At this point Brian surprised me by showing up at the medical center; when he got my message he told work he was leaving to go to the hospital...I'm not too sure that is going to bode well for his job, but I was glad he was there with me. The ER doctor moved my leg in various directions and observed my grimace of pain and sharp intake of breath in a very clinical fashion. Then they sent me for ex-rays. (The radiology people commented they could still see the barium in my system from the CT scans.)

There probably isn't much that can be done surgically to address the fracture; it's not the kind of injury that pins or false joints can repair. Unlike Grandma, I do not need a hip replacement. They gave me crutches to walk with, advised me to keep my weight off of it, and Dr. Nadjarian said he would call UM and try to set something up with an orthopedic specialist there since I'm going to be transferring my oncology to UM anyway.

It looks like I will be spending some more time at home for a while. I just got cable and will be able to watch Trading Spaces just like I get to do at Grandma's house.

Labels: barium, Brian, Dr. Nadjarian, fracture, Grandma, hip, physical therapy, University of Michigan Cancer Center, x-rays

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I went shopping for a bridal gown with my mom yesterday at the David's Bridal a few blocks from here.

You don't just go in and look at stuff hanging on the racks. They take down your information, assign you a consultant, and send you to one of the fitting rooms. The sales consultant provides you with the appropriate underwear (I must say, I was surprised at the sizes required and can only say that at least the resulting bustline will ensure that I have someplace to set my hors d'oeuvre plate if I need to put it somewhere) and then starts to bring dresses which may or may not match what it is you had in mind.

When you try a dress on, there are no mirrors in the fitting room so you have to go into the public area and stand on one of the pedestals in front of the mirrored doors so that everybody in the fitting area can see you. Then they find a veil and headpiece to complete the look. She kept trying different head things, and I asked, "Um, could we worry about the accessories later and try some more dresses?"

Some were too "busy." Some had weird pleats of fabric around the midsection. Some gapped in funny places. I finally tried on one that I had seen in the booklet and decided was a distinct possibility; it was very lovely and simple and faintly Jane Austenlike.

Then I tried on the princess dress.

You know, the one with the yards and yards of fabric, clean lines, and embroidery that added just enough interest without being tacky or too much. I laughed at how much fabric was involved, and it looked astonishing. The elderly lady sitting outside somebody else's dressing room declared it was beautiful and I had to get that one! The consultant thought she might have found the winner, because the dress made me smile so. I thought I would need birds to hold up my train.

As much as one hates to be trapped by stereotype, I confess I have secretly always wanted to have the princess moment. The one where everybody looks at me and imagines there's never been anyone lovelier.

I really didn't know how I'd be able to choose between the two top contenders. One was simple and practical and lovely; the other was a stunning confection of 30 pounds of fabric. Finally my mom went out to help the saleslady scour the racks for the one or two other dresses in the book that I wanted to see, and I said it was up to her to find the one that keeps me from having to choose between the other two.

This is exactly what happened.

See, these dresses never really look like much on the hanger. The photo gives you no idea what they look like in real life. I ended up trying on something I wouldn't have otherwise, and it was the most beautiful thing I have ever worn. It will need to be hemmed and slightly adjusted, but otherwise looks as though it were made for me.

So I'm not going to have the bird-carried sweeping train, but I'll have that moment where people look at me and are amazed that the trouser-wearing librarian can actually look like that.

The dress is in my front closet, and Brian has been warned not to go looking for it.

"It's bad luck," I told him.

He promised he wouldn't peek. "The last thing we need is bad luck," he commented. "I ride a motorcycle and you have cancer."

We both laughed hysterically for several minutes at that one.

Labels: Brian, David's Bridal, dress, gown, mom, wedding

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I am engaged to be married. :)

Brian made home-cooked lasagna for dinner, which I thought was good enough, but it got better. He rented some movies (lighthearted ones...I declare it will be a long time before I am going to be able to watch Shadowlands or Terms of Endearment), and we were having a couch-potato evening, necessitated by my having twisted funny while reaching for some rolls of toilet paper and being somewhat laid up by a back spasm.

He paused the movie and got up, ostensibly to clear the dishes, and came back and got down in front of the sofa I was sprawled upon. "We might as well do this right," he said, producing a ring box.

I can't accurately describe the sequence of events, but they involved him officially asking if I would marry him, me saying yes, trying the ring on, moving it to my pinky, an explanation that the place he got it didn't have half-sizes for some reason (we are somewhat financially constrained), some goofy smiling and hugs and kisses, and a request to bring me the ring he gave me for my birthday so I can wear that on my left hand while we figure out how to handle the sizing issue.

I'm a fiancée.

Labels: Brian, engaged, ring, Shadowlands, spasms, wedding

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