Janet's Blog

And so I've been having some hip pain for the last few days, which seemed to feel worse as I either twisted while putting weight on my left leg, or tried to roll over in bed.

Normally I would chalk it up to random soreness (like the pain in my shoulder I think comes from sleeping on my arm in a wonky manner), but I refuse to blow off pain in my hips, especially after the ordeal in 2005 which left me with pelvis crumbs, requiring a month-long stay in the hospital after seven months of useless and ineffective treatment, and required a move to an apartment without lots of stairs.

I was going to call my nurse practitioner about it in a few days if the pain hadn't gone away, but at infusion today the chemo nurse asked if I was having any pain. So I admitted that I was, that it wasn't bad, but I was wondering if I should get an ex-ray or something. So I spoke to the PA, who set me up with ex-rays right away. They got a wheelchair for me--it was very wide; I felt compelled to make beeping noises as we rolled down the hallway--because they didn't want my hip to blow out as I was on my way for a diagnostic test.

The results did show some "activity." Unlike the last time, the part that's becoming a little spongy is the spot connecting the main part of my left femur with the ball joint that fits into the socket of the pelvis. I think there's also some damage on the top ridge of my pelvis. The PA told me I'd need more precise scans--which I am hoping do NOT include a CT with contrast dye because IVs are eeeeeeeeeeevil--and I'll be set up with an appointment to see the orthopedic surgeon. I saw her once before when I began treatment at U of M. There was noting to be done about my pelvis then, but there might be something to be done to "shore up" my femur.

I've got a cane now because I really don't want to tote a dorky old-person walker with me wherever I go. I need one of the hot-rod walkers that have the hand-brakes and built-in seat.

Labels: CT scan, hip, infusion, IV, Lita, stairs, walker, wheelchair, x-rays

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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

5 comments

I went back to work Monday, March 10 and was happy as a clam to not only be out of the house, but to once again be useful to society. Unfortunately, by the evening my neck/chest/shoulder area began to burn and itch so badly that I cried at my appointment the next day. So I didn't have infusion--they can't treat me with chemo until the skin condition clears up; instead, I went back to the dermatologist to get more of the giant blue horse pills, many boxes of lidoderm patches, and a medication called lyrica (used to control seizures, treat nerve pain and fibromyalgia). From there, I was referred to the pain center to see about getting something called a "nerve block."

Nobody told me to fast or have someone else take me to the appointment, so they could not actually do the block that day.

The doctorlet took my health history and consulted with the actual doctor, who decided I should be on more of the lyrica but should spread out the dosage over the day.

I thought this was a little weird, as the medication label indicates that I should not operate machinery or drive until I knowhow this will affect me...I was also to take Pamelor (since discontinued in light of my extreme fogginess and impairment), which boasts the same warning, and ultram (same warning) instead of Ibuprofen.

Loaded up with so many medications--my arms feel noodly and I was/am definitely in a state of "keep Janet from driving and don't let her make important purchasing decisions right now."

I tried again on Tuesday to have infusion, but Dr. Hayes wants to continue to delay the chemo. It was suggested to me that I not try to return to work and that I should probably not plan to go back for another four weeks or so.

I'm worried about my medical condition right now, but having to stay home again when I was so happy to feel like things were getting back to normal is the hardest to bear. I don't really know if it will be four weeks, either, because assuming my idiotic nerve issue gets taken care of, there's no guarantee that I will immediately tolerate the chemo treatments well, and sometimes the follow-up appointments can be unpredictable.

I went to the dermatologist yet again--they attempted to do another scraping test to see if I need a third course of an anti-viral (tests were inconclusive, but it is the attending's opinion that the lesions do not look active, they look like they are healing). The doctor I saw this time at the derm office remembered me--"Wow! Your face looks great!" She is the one who treated me for my horrible steroid-induced acne.

I should be grateful the skin on my puffy moon-face looks great.

The skin on the back of my head and neck is very broken down and I have wound care products to cover the worst of it.

The very bad thing (aside from being in ridiculous discomfort from the nerves in my neck and shoulder all going BLEARRRRRGHHH!) is that without chemotherapy, my liver function is certainly not improving. It was Dr. Hayes' and Lita's opinions that Adriamycin was no longer working for me at the time I had my brain episode. So the plan is to switch me to Xeloda and Gemzar. However, one doesn't do chemo while doing whole-brain radiation. And one doesn't do chemo while suffering shingles. And one doesn't do chemo when suffering a re-flare of the shingles that's even worse than the first time around.

I had a CT scan recently, and it occurred to me that Lita has not given me the results, which is a little unusual. I am worried about what my liver is doing. I really need to be on chemo, and haven't been for about two months. Naturally, other problems are occurring as a result.

So if anybody needs me, I will be at home shaking my impotent fist at the heavens and watching bad daytime tv. I am itchy, bloated, have swollen ankles, and my liver and spleen are probably busy applying for their own zip codes.

Labels: acne, Adriamycin, CT scan, Dr. Hayes, Dr. Sachs, Gemzar, Lita, liver, lyrica, pamelor, shingles, spleen, ultram, Xeloda

1 comments

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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I think people had a good time. There were many foods. Grandma (who actually expressed shock that I could cook a turkey) would have been proud of the spread that got laid out.

Everything got done--I even managed to finish some gift knitting while the turkey was in the oven. Well, almost everything. I still need to take care of sending the remote gifts. Oh well.

My back spasms have calmed down and my flute playing at church went reasonably well. I can't say it was great, but nobody noticed anything amiss.

We are now stripping wallpaper from the kitchen walls. Sadly, there will not be enough time to totally strip and paint, but I don't care. I'm relieved to see the paisley coming off in stretchy vinyl sheets and lying in tatters on the kitchen floor. Whoever decorated this place before we moved in was demented and color-blind.

I had a CT scan on the 26th and an upcoming bone scan this Thursday; presumably I will get my results January 8. I have also started physical therapy again. I am sore, but in a way that is probably good. I'd like to be able to comfortably tie my shoes and lift my legs into the car without having to use my hands to do it. Today I had a therapist throwing a foam ball at me as I balanced on a teetering board. I'm not entirely convinced this will help with my goals, but I'm getting better at catching a foam ball while balancing on a teetering board.

Happy New Year! Pop on over for some spinach dip and sparkling grape juice, if you like. We might be awake long enough to watch the ball drop.

Labels: bone scan, Christmas, condominium, CT scan, flute, Grandma, physical therapy, wallpaper

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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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This past weekend I drove to Cleveland to see my dad and visit with my Grandma, aunts, one uncle, and several of my cousin's kids. On the way there, I was pulled over by one of Michigan's finest. I was driving somewhat fast-ish, and figured I deserved a speeding ticket.

When he pulled me over and asked for my license, registration, and proof of insurance, I accidentally gave him the Saturn registration and utterly failed to find my proof of insurance (which turned out to be at home in a different purse). Then he pointed out to me that my license tags had expired. Of course...my birthday came and went. I completely forgot about renewing my tags as the Secretary of State had not seen fit--for the second time this year--to send a renewal notice. Then he also pointed out that the expired registration indicated the car was a four-door and not a two-door. "Were you aware of that?"

"No," I squeaked.

He went back to his vehicle and did whatever it is they do back there while you are squirming in your seat. I might have cried a little bit. I blew my nose.

When he came back, he told me he would let me off with a warning, but I needed to get it taken care of right away. "Be careful," he told me.

I was very surprised, since I actually had committed a number of offenses (although the only one I did on purpose involved the celerity with which I was zipping down the road). I had not put on a wig that day, figuring the back would just get tangled in the car and I'd swap the bandana for hair when I got closer to Grandma's house.

Maybe I inadvertently played the cancer card. Maybe he decided not to give the bald lady a ticket because he'd feel guilty doing it.

It does happen: I think people panic and become unsettled with somebody who looks visibly ill or different. I have on more than one occasion cut to the front of the baby frappuccino line at Race for the Cure. Hollywood stars get clothes and jewelry all the time for looking abnormally fabulous; have you ever seen the amazing bags of swag they get for going to the Oscars? No one's giving me iPods, furs, and expensive perfume. No one need be jealous of us if we play the card from time to time--whether we mean to or not.

Neupogen to boost your white blood cell count: $1000
A Year's worth of chemo and Avastin: $100,000
A trip to the ER for an emergency CT scan: $50
Getting out of a ticket because you're bald and feeble: priceless.

Labels: Avastin, baldness, birthday, chemo, CT scan, Dad, Grandma, hospital, Neupogen, Race for the Cure, vacation, wigs

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

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My scans before I left to go on vacation were inconclusive. My tumor markers had blipped up, my liver functions had blipped up, the scans showed possible new activity in the thoracic spine and possibly the dome of the liver, but Dr. Hayes' advice was to wait and see how the next round of blood tests went, since my numbers have blipped up in the past only to blip back down again.

This week the lab screwed up and didn't take all the appropriate vials of blood, so I had to drive to the hospital early this morning to get poked so that Lita can call me with the tumor counts and liver enzyme numbers.

It may be that I am coming to the end of my relationship with Abraxane. If my numbers keep going up, I will get to go through the scans again before next month's appointment with Dr. Hayes.

There are other drugs I might try instead, like Xeloda or Navelbine. I've been on Abraxane for approximately a year, which Dr. Hayes says is about to be expected. If the chemo drugs are only going to be effective for a year, I sure hope they keep crankin' new ones out.

Labels: Abraxane, bone scan, CT scan, Dr. Hayes, Lita, liver, Navelbine, tumor marker, Xeloda

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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

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I got so excited by the Posterior Crisis that I forgot to dwell on my CT scans and the joy and delight that is the barium preparation. I don't know why UM Hospital doesn't use the powder that can be mixed with clear liquids. I've been advised by other people to ask for it; I may try to bargain the next time scans are due.

Bargain? Who am I kidding? I will try to beg and wheedle. And cajole. And whine. And plead.

Anyway, I do not have the results of the scans pertaining to my more serious medical issue, although I do know that the CT scan of the pelvis did not show a horrible problem of the rear endal area.

I have an appointment scheduled for Tuesday morning with Dr. Hayes, which I am absolutely NOT going to be able to make. I have hired a consultant from our library's automation system vendor to come to our library to help look at system codes and database setup things. I have been working towards this for a very long time and feel that I absolutely HAVE to be there.

Am I being ridiculous? Isn't my health more important?

I submit that my sanity is equally important to my physical health. Last year I was ill and depressed and really didn't start to feel "normal" until I went back to work. I've been sidelined in the last several months with stupid immuno-compromised illnesses and now my issue of the area upon which I sit, and want to put it all behind me (pardon). I want work to be normal. I want work to not just be normal, but to be effective. What difference will it make if I have to wait a few days or a week to get scan results? I'll have to deal with the results anyway.

This visit is a two-day thing that will not be repeated any time soon. If I miss it, there's no way to wait two days and do it then, instead. I can't reschedule the consultant's trip. I can't fail to show up one day and expect to have people take my opinions seriously.

I don't have TIME for this cancer crap right now.

Labels: barium, bone scan, CT scan, Dr. Hayes, fissure, library

1 comments

My CT scan results came back showing improvement. Since there was still some concern about why my liver counts were off, I had to wait until the blood test results were back on Tuesday before going to the infusion area.

It took hours.

It was possible that the Abraxane had ceased to be effective or was causing the liver problems, in which case Dr. Hayes mentioned having me participate in a research study that involves two chemo medications taken orally.

Whereas I wouldn't mind being able to take pills, the prospect of having to move on to the next chemotherapy drug did not make me happy. There's a limited number of chemo drugs available, and I have to hope that production of new effective medications (to which I am not allergic) outpaces my disease.

Anyway, the numbers came down so I went to go be infused as normal.

I did discuss with Lita the possibility of reducing my dosage of decadron, but in the mean time am using Prescriptives foundation to at least look better. I have concluded that the acne creams are not doing squat and will need to have words with the dermatologist about it on Tuesday. Monday I am going to have words with the orthodontist, so hopefully soon I will be able to floss and eat corn on the cob.

Labels: Abraxane, blood tests, braces, chemo, CT scan, Decadron, dermatologist, Dr. Hayes, infusion, Lita, liver

1 comments

THIS is how I feel about scans:



I need to change "Hormel Foods" to "Horrible Fluids." I am still suffering the aftereffects of the barfium[sic].

I did get good results, though. I emailed Lita to ask if I was supposed to have been scheduled for a bone scan and if the results of the CT scan were available yet. She left a message informing me that my bone scan had been scheduled for the tenth but was canceled (I suspect because I failed to show up, not having been informed about it), and that the preliminary results were good.

I will get more detailed information Tuesday, but my liver is NOT about to be completely engulfed in horrible cancerous blobs of doom, there is improvement, and it looks like my chemo is still working.

Phew!

Labels: barium, bone scan, CT scan, Lita, liver

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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Blargh, blargh, blargh.

Really it's not the flavor that's quite so bad. Berry barium tastes like berry Tums. It's that barium has this bizarre oily, foamy texture, is difficult to drink quickly, sits in one's gut like a brick, and then tries to exit the body all at once. Horrible.

Then there's the I.V. insertion for the contrast dye: the first attempt to jam a needle into my scarred veins will invariably fail. As will the second. And the third, at which point they are obligated to go get somebody else to try. I will probably end today with multiple stab wounds to the arm.

I'm also hungry and not allowed to eat anything before the test. Now I am imagining that I can feel a dull ache in my liver region, but it's probably that I'm hungry. Of course after consuming a giant pile of barium I won't feel like eating anything, particularly since what gets caught in the barium might try to exit at the same time.

I hope the scan does not show horrible, massive tumor growth. I hate that there is no other way to get this type of data. I've asked whether MRIs or PET or some other scan can do what the CT scan does, but was told no. I'm not entirely sure I believe it; there's probably some sweetheart deal with barium drink manufacturing companies to suppress other imaging technologies so that they can continue to make a profit on making people drink nasty stuff. Or the iodine contrast dye manufacturers, now that people are more likely to have Neosporin than iodine in their medicine cabinets, are holding on for dear life to their monopoly of contrast imaging. It's all about the money; I just know it.

Capitalist bastards.

Labels: barium, CT scan, IV, liver

3 comments

Blood test results show one tumor marker down (yay!), one blipped up somewhat (boo!) and my liver function tests show some results that are of enough concern to warrant a new battery of scans, including a bone scan and the ever-popular Barium Barrage, or "CT with contrast" (%$#@!).

I contacted Lita to find out about getting a "power port" but changed my mind when speaking to the scheduling people, who indicated that a power port has to go in the chest and cannot be placed in the arm.

For now I am going to have to live with the agonizing jabby-jab-jab of IV placement for the contrast dye.

Also, I absolutely must resume the Neupogen shots, which are for the purpose of boosting white blood cell counts and feeling like one is being stung by a bee without having to go outside or risk exposure to pollen. And a significant portion of my remaining twelve hairs have decided to shuffle off the mortal coil that is my head.

Labels: baldness, barium, blood tests, bone scan, CT scan, hair, IV, Lita, Neupogen, port, tumor marker

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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

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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

The other day at the appointment with Dr. Rodriguez (who is a physical rehabilitation specialist), it was determined that I am well enough now to not require further visits with her, and that should I desire physical therapy in the future or if anything comes up, I could see her "as needed," but for now I should consider myself as being graduated from physical therapy.

I asked about the CT scans she had ordered of my upper spine, since I had complained of some neck issues which seem to be causing numbness in my thumb when I turn my head to the left. It turns out there are metastatic lesions on that part of my spine as well, which isn't something she can really address.

Brian brought up the subject of whether or not it would be safe to ride a motorcycle, which she denied vehemently. I believe he was asking if RIDING could cause any problems, but she focused on what happens when you fall off or get hit by a car.

Of course nobody thinks that will happen.

Yesterday on the way home from the infusion, Brian asked what I thought about what she had said. There was a yellow bike ahead of us. I said I think that riding itself won't necessarily shake me to pieces and that the doctor is correct in that the consequences of actually having an accident are likely to be worse for me than for other people, but that it might be possible to ride safely. Brian also said he agreed completely with the doctor, that riding a bike isn't as safe as being in a car. It's true; you're totally exposed. But it might be possible to find a relatively safe place to go to ride where bikers are expected and common. We agreed Hines Park would be a good place to ride. At that moment the traffic got a little wonky. Things slowed down and we shifted lanes a little bit only to see that the yellow bike we had seen lay smashed in the middle of an intersection. The rider was lying face down on the pavement.

"Oh my God."

"Holy shit."

Brian pulled to the right and hopped out of the car to see if the rider was ok. I called 9-1-1, only to regret I didn't know exactly what part of 153 we were on. The operator told me they were getting other calls, so I thanked her and hung up. The rider appeared to be breathing, and I think had been advised to lay still in case of a neck or back injury. There wasn't much else we could do. When a police car pulled up to take control of the intersection, Brian got back in the car and we continued down the road. Brian said that the rider's face was smashed up from not wearing a more protective helmet.

Brian went out riding after we got home. I told him to be careful and was relieved when he got home in one piece. He later told me that the smashed yellow bike was still in the intersection but that the car and the rider were gone.

He was still thinking about the accident this morning.

Labels: accident, CT scan, Dr. Rodriguez, infusion, motorcycle, physical therapy

1 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

0 comments

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

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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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