Janet's Blog

My last tap (on election day) managed to suck out 3.6 liters of fluid from my belly, a personal record. I have been scheduled for weekly taps so I have the option of canceling if I feel like I don't need one.

I had the head of the unit performing the procedure again. I can't say it was pleasant, but at least the only part that hurt was the administration of the numbing agent.

I have decided for now not to go with a permanent drain. The prospect of never being able to have a bath or go into a pool or hot tub (or the ocean) again isn't something I want to take on right now, particularly since Brian and I are planning to take a trip to Traverse City during the holidays, and our hotel room will have a jacuzzi.

In other news, I am waiting for an MRI that is to take place Tuesday evening at 10:40. I am not particularly troubled by small spaces and actually tend to fall asleep inside the torpedo tube. The purpose of the MRI is to determine why I have pain in my left hip--whether the femur or pelvis is fractured or what. The ex-ray was inconclusive. So I am walking with a cane for right now to keep weight off of my leg and am taking some slightly more hefty pain medications than just ibuprofen.

It wasn't just the pain meds that made me imagine Barack Obama won the election, right? It really did happen? Woohoo!

I have said for a while now that I would love to see a woman or a black candidate become president of the United States. I am pleased that not only do we have a historic situation as a black man is now president-elect, but he is well-reasoned, inspires hope, and has fired the imagination of Americans like no one in politics has in a long time. My hope is that he will be able to use the good will and capital he seems to have among other nations to help make the world a more peaceful place.

I am less sanguine about this country's economic situation and think it will take more years than he will have as president to recover from whatever this is--recession? self-adustment? depression? aberration? consequences of irresponsible de-regulation? But I can hope.

Yes, I've got an abundance of hope. And enough stubbornness to think that I may get to see the recovery for myself.

Labels: Barack Obama, hip, MRI, paracentesis, ultram

5 comments

Not that I am actually very anonymous, or anything...

Dr. Hayes and Lita told me yesterday that another patient had brought in some printouts from my blog mentioning their names. My mind raced...had I said anything unflattering or unsuitable? I didn't think so. I've actually gotten some emails from people seeking contact information for them. Once somebody even Meebo'd me looking for Lita's email address. I'm happy to tell anyone that my oncology team is fantastic. (And I'm not just saying that because I'm worried they're now reading what I have to say!)

I also broke my record yesterday and had 3.02 liters of frothy, green fluid sucked out of my belly. Since I didn't have time to take any Xanax, I was relatively alert and had a nice discussion with the PA and the other technician about the water that's in the vacuum bottles. The question was whether or not the bottles always have water in them. The PA read the bottle, and it indicated that they are always treated with hot steam for sterilization purposes.

I pointed out when the steam cools, not only would it result in water, but it would help create the suction, as well. "I suppose the air would get heated and then also cool off, creating more suction."

They were impressed by my scientific acumen and wanted to know how I knew. I pointed out that you can do an experiment where you put a lit candle in a dish of water, then cover the candle with a glass. The candle will go out when the oxygen is exhausted, the air cools off, and it will suck water up into the glass due to the creation of a vacuum.

"Are you a chemist, or something?" They asked.

"No, I think I saw it on 'Bill Nye the Science Guy'. I'm a librarian."

Everybody laughed. Well, he's scientific. "Yeah," the technician commented. "It totally says so in his name!"

I suppose they might have some other means for creating vacuum in those bottles, since I have no way to calculate or prove how much the cooling action of the steam might create it, but I still maintain it's possible. Surely they wouldn't want the vacuum to be too strong, otherwise the catheter would start to suck out my innards.

Labels: Dr. Hayes, Lita, paracentesis

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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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I put off having a paracentesis until this week because it didn't seem so bad last week. By last Thursday I was feeling pretty uncomfortable. So I arranged it for Tuesday, which at least had me on the same day as infusion (only one day at the hospital) but I wish I had goon sooner!

Man, do I feel better.

At my regular appointment, I found out that my tumor markers are nearly half what they were (Yay, Gemzar). No word yet on the ctc test, which has to be sent out for analysis. The last number I saw (in August) was alarming in light of the "key" below on the sheet, which indicated when ctc is used for prognostic purposes, any number higher than 5 indicates overall survival of 4.1 months. My number was 19. I have exceeded the "prognosis" by three years, so I'm not sure I can treat that number as anything more than a snapshot from a trend like the other numbers.

Months. Bah.

It wasn't enough to dampen my thrill at the other markers AND my liver counts, which are approaching normal. Maybe soon the ascites build up will slow down and I won't have to be poked and drained anymore--or at least not as frequently.

w00t!

Labels: ascites, Gemzar, liver, paracentesis, tumor marker

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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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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

3 comments

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

1 comments

"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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