Janet's Blog

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

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

It's a lot more than I expected.

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

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

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

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

Busy month!

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

1 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

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

This is a relief.

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

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

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

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

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

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

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

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

We will celebrate Wednesday, I think.

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

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

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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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It's not really "gloom and doom" but it is uncharacteristically non-optimistic.

My back pain has continued past the time of undue stress. Instead of feeling like a muscle got pulled on the right from wrestling with a 20 pound puppy who doesn't want his feet wiped off, or a stress spasm on the left from having too much to do and too little time, this goes down the center of my back right below the shoulder blades. I start out the day just fine, but in the evening the effort of holding myself upright takes its toll and I have to lie down.

I totally have no expertise in reading a bone scan, but at my scan on Thursday I imagined that my spine was more "lit up" than usual. I rather expect Dr. Hayes (or Lita, since the man is busy and may be at some conference or other) to tell me I am to be switched to another type of chemo.

If not, I need to ask why not. I'm just not convinced this one is working. Which is a shame, really, since except for the back pain (and some heartburny-type issues for which I am taking prilosec) I feel pretty good. Well, except for feeling routinely overheated in the mornings before my alarm goes off, and feeling somewhat icky before sitting up--it usually clears up after I'm upright for a while.

Maybe I'm just gearing up to expect the worst so that when I get to my appointment I will be pleasantly surprised that my tumor markers are holding steady and the back pain is likely to be from the exertion of physical therapy.

I doubt it.

Labels: bone scan, chemo, Dr. Hayes, hot flash, Lita

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

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

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

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

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

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

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

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Today I feel like my own brain has been swiped.

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

At 2:40 a.m.

That is not a typo.

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

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

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

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

Grrr.

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

3 comments

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

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

(Feel free to click the image for a close-up. It's icky.)

Do you keep things in your pockets? Keys? Spare change? An empty gum wrapper? Your work ID card?

What if, when you went to reach in to your pocket to retrieve something, your fingernails didn't come out with your hand? The photo to the left illustrates a potential side-effect of Abraxane. The part of the nail below the green-black portion is the part that is still attached to my finger; all but my pinky on my right hand--and so far three of the nails on my left--have lifted off the nail bed. It's uncomfortable and troubling.

At my last doctor's appointment, I was hoping for advice that would help. Could I use nail glue to glue them down? What about stuff that might get stuck under there? Will they detach completely, or will the lifted parts grow out? Lita didn't know for sure. They might fall off completely. She did say that nails that lift from chemo treatments tend to not get nail infections, and if they smell weird, to use epsom salts. Dr. Hayes helpfully suggested, "wear nail polish."

Great.

My fingertips are sore. Typing is irritating and I can't open things very easily. Baxter has no idea that grabbing my hand with his little teeth might result in an unfortunate snack.

Finally, some non-icky photos:

Labels: Abraxane, Baxter, chemo, Dr. Hayes, Lita, nails

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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

If it's not bad enough to be bloated and mostly bald, with eyebrows that are jumping ship even as I type, now I am dealing with an issue I really haven't had to consider for a while.

I laugh when I see those moisturizer commercials which promise you can have skin that looks "ten years younger." I currently have the skin of a fifteen-year old. I have acne all over my face, head, and neck. It's around my ears, blanketing my forehead, dripping down my cheeks. The bumps are mostly small, at least, but there are more of them than I remember ever seeing before. I never had acne like this even when I WAS fifteen, and I by no means had clear skin.

In fact, I had acne well into my twenties but it had finally gone away. I was happy to have clear skin; I felt I deserved it after years of misery and over-the-counter treatments.

Dr. Hayes seems to think it is a reaction to the Avastin. I dunno. It started after resuming Abraxane; I don't know why adding back Abraxane would make the Avastin suddenly produce this effect. My head itches constantly, and most of the bumps are mildly painful. Acne products do no good, they just make my skin more red and peely. I have given up wearing my red wig because placing red hair on top of a red face looks awful. I have (mostly) given up wearing my brown wig because wearing stuff on my head is itchy and uncomfortable. I'm wearing hats to work, but they are hot, itchy, and uncomfortable. I don't leave the house on weekends because it's too much effort to try to cover the blotches, paint eyebrows, ring my eyes with liner so that I look like I have actual eyeballs and not currants sunk into my red, lumpy head.

I wanted to call in "ugly" to work today.

Next Tuesday I will be seeing a dermatologist for the first time, who will probably go, "hmmmm. You have a rash." I wonder if he or she will have the miracle cure.

Labels: Abraxane, acne, Avastin, baldness, Dr. Hayes, eyebrows, hair

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...And some Elsevier articles that really have me convinced that the braces are a bad plan.

I know the orthodontist doesn't believe I've been wearing rubber bands because my teeth are not moving. Today he had the assistant put "superchains" on the left side (with the largest gap) underneath the wire, and then a "powerchain" all the way across the brackets on my top teeth from port to prow to starboard. My mouth feels uncomfortably tight and this cannot possibly be good. I've been looking at some journal articles today, and one showed a couple of case studies of people on bisphosphonates who, even though they did experience some very slow tooth movement (one lady had braces for 30 months instead of the projected 18-24), it was mostly from tooth tipping, and not because the roots were actually moving.

I need to ask to have these things taken off. I will be disappointed to have gaps left in my teeth, but at least they look better than they did before they reached this level of straightening. Maybe at some point I will be off the Zometa long enough for dental work of this kind to make sense (maybe...but doubtful: bisphosphonates have a very long half-life and I'm sure Lita/Dr. Hayes won't just take me off Zometa), but right now I think it's a lot of pain and anguish for negligible (or poor) results, with added risk of osteonecrosis.

Do I wait until my next orthodontist appointment? Should I ask Lita about this again next Tuesday? I don't really know how to bring this up with the orthodontist. I gave him Lita's number; I'm not sure he ever called. I'm not sure he's up on his research about this issue. I'm not sure he wants to hear a patient talking about "the literature." Maybe I should just go in and demand to have retainers because I'm done.

I really wanted my teeth fixed. Oh well.

Labels: braces, Dr. Hayes, Lita, Zometa

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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

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Today I started my holiday from Abraxane. I will continue with Zometa and Avastin, but the idea is that I'm currently doing so well that taking a break from chemo will do no harm. This will also enable everybody to see if just the Zometa and Avastin combination will keep things at bay.

If not (I am monitored with blood tests, and Dr. Hayes will order scans if warranted), I will obviously continue with Abraxane. However, eventually I will develop tingling and numbness in my extremities, and the drug may stop working for me. At which point there are other drugs to choose from, but I'm not sad about delaying the inevitable.

I'm also not sad to not spend the later part of this week--the Thanksgiving Holiday--feeling icky and like I have the flu. Woohoo!

I am a little bit sad that my braces were adjusted yesterday. I feel the pain. I hope my teef recover by Thursday.

Labels: Abraxane, Avastin, braces, chemo, Dr. Hayes, Zometa

2 comments

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

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

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

What a very sad sack I was.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

(The Payoff.)

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

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

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

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

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

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

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

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

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

2 comments

Samson is the biblical hero whose mighty strength lay in his fabulous unshorn hair. When his hair is cut, he loses his power.

I only mention this because today I have hair again for the first time in weeks, and I feel completely and utterly exhausted. The tendrils wafting about my face are most certainly NOT imbuing me with any kind of energy, strength, verve, or power. I just want to crawl into bed and sleep, which is a little bit unfortunate because I'm not currently in a position to do so (I'm tying at work...shhhh, don't tell).

I don't know if my physical weakness today is owing to wearing hair that isn't mine, or is just a natural ebb or flow of the chemotherapy. Maybe, as with Samson, the loss of my natural hair spells weakness and feebleness. Maybe it's just a result of a draining course of medication. Maybe adding extra hair is exacerbating my weakness.

Maybe it's just coincidence and I'm being foolish.

I actually do like my new hair, but I'm not sure I have the energy to fight with the insurance company on this issue. When I asked over the phone, I was told that wigs are "not covered" by my insurance policy. The hair store advised me to refer to it as a "cranial prosthesis" and gave me a list of steps to try fighting the insurance company. After all, they would pay for a breast prosthesis if I wanted or needed one; this really isn't different--except that the top of one's head is more difficult to conceal.

I'm sure bald men everywhere are playing their tiny little violins just for me. But it's not a natural, gradual genetic circumstance that led me to this. It was sudden, shocking, and one of the more horrible outward signs of this betrayal by my body. Some of my breast cells are going nuts, have migrated, and are attacking my spine and organs; and now the treatment is leveling destruction on one of the features I've always felt pretty good about. It just isn't fair.

Of course life isn't fair, but it doesn't have to be unmitigatingly awful, either.

Brian says he likes my bald 'do. I guess it's not the worst it could be; at least the treatment seems to be having a good effect on the tumor markers. Dr. Hayes views me as a stunning success story when you compare my current status to how I was doing in December. Then, I couldn't walk, I could move without excruciating pain, I was vomiting daily, and wasn't strong enough to bear chemotherapy. I suppose I should be grateful that things are better than they were.

I still want my hair back, though, dammit.

Labels: baldness, chemo, Dr. Hayes, hair, insurance, tired, wigs

1 comments

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

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

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

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

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

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

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

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

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

God is apparently not very willing.

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

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

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

2 comments

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

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

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

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

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

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

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

The Food Network is creating a monster.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Agony.

Every bump in the road compounded it.

Getting out of the car took forever.

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

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

To be continued...

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

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