Wednesday, September 29, 2010

Day 146: I've got heart

Be forewarned: this is going to be a long one. I have a lot to get off my chest. I can't believe I wrote that last blog on Friday. Who knew what the weekend would entail?

I spent what might be the last pretty, warm, sunny weekend of the year in the hospital, getting a battery of tests for my heart.

Last time I wrote about the crazy weight gain and loss that I had after taxol. With the gain, I had sausage fingers, though my ankles and face looked fine. This was "normal" water retention from the chemo, I was told. Seems abnormal to me, but hey. After my hell day on Wednesday, I felt really out of breath and my heart was pounding, starting on Thursday. I didn't even think to mention it in the blog, because I figured I had just had chemo, I was bound to feel lousy, and I had been doing some extra things like water aerobics so maybe that was the problem. But on Saturday morning when I felt like my heart would leap out of my chest and the most exciting thing I had done was make pancakes for my family, I thought I should call a doctor.

Whoever was on call at Northwestern told me to go to the ER. I was annoyed at that advice, since I wanted to go apple picking that day. But I did it anyway, and it all spiraled from there. I went to a hospital here on the south side that is also a trauma center, so everyone and their mother who gets shot, stabbed, or in a car accident ends up there. This happens a lot on the south side, so I was on hold for a while, sitting in a wheelchair in the hall, waiting for a room to open up. I should have realized that if they were willing to spare a room for me at all, there must have been a reason. Cops were everywhere, there was mad drama around me, and I looked comaritively robust in health compared to everyone else. I sat there reading a book, and no one else seemed to be able to move or breathe. I was not expecting to be there for more than a few hours. In fact, I drove myself there. I figured Gabe had the kids and if something crazy happened and I couldn't come home, we would figure it out. But I really didn't think that would happen.

They found me a room finally and I had multiple EKGs and two blood tests. The on call doc was very concerned. My heart rate was up, above 100 most of the time I was there, up to 115, and my EKGs were abnormal. The blood tests showed elevated troponin, a cardiac marker that if elevated means it is leaking from the heart. The three most likely reasons for that are a heart attack, blood clot or damage to the heart muscle. So the doctor said I couldn't go home--they were going to keep me there, probably overnight, and try to figure out what was happening.

I couldn't believe it. I actually asked her to repeat what she said. I just turned 35, I said. Is it the chemo? Well, we don't know. You will need a CT scan to see if it's a blood clot. People with cancer are much more susceptible to bloot clots. This makes no sense to me, even now, but I said ok--let me call to see if it's ok to get a CT scan while I'm doing chemo. I called Northwestern, talked to the on-call doc again, who said that the possibility of a clot superceded all other concerns and I should do it.

Up until that point I had avoided an IV, even though they wanted to put a precautionary one in "just in case." I told them I was saving my veins for chemo. For the rest of my life, I can never have a blood test, shot, IV or even blood pressure done on my left arm since my lymph nodes were removed. That leaves me with two good veins for IVs. Well, no such luck, I was heading for a CT scan, and I needed the IV.

The last time I had one was the dreaded one that happened when I was six and they diagnosed me with epilepsy. That was a traumatic test, as I've noted before in this blog. This time I was terrified something was wrong with my heart or lungs, but I wasn't afraid of the test itself. When the nurse told me the dye injection would burn and feel very hot, I thought, ok, what's scarier is that one of these three minute tests is like getting 250 xrays. But when the dye went in, I thought, holy shit. There is a fire in my body, starting at my head and moving down to my toes. I actually thought I had wet my pants but it was the heat in my groin. Then just like that it was gone, they took the pictures, and I was done. Modern medicine is truly bizarre.

I eventually saw a doctor in my new home at the hospital in the "Critical Decisions Unit" which should be some kind of law and order spinoff title. He was an extraordinarily nice man. Youngish, big smile, charming. He was listening to my heart and needed to move my gown. He got embarassed and said he was sorry for undressing me like that. I wanted to laugh, but he was so serious about it that I didn't. Does this guy know how many breast exams I have had in the last few months? For all I know everyone who has read this blog has given me a breast exam. Anyway, I had this heart monitor attached to me via a special gown that allowed me to walk around with it, and I had EKG stickers all over me in addition to the monitor stickers, and I generally wasn't feeling too sexy or modest.

His bedside manner was both concerned and committed. He was drawing pictures of my heart, giving me some short Heart Muscle 101 class, going on and on about what could be happening. He said that they needed to find out if the muscle of my heart was damaged. For that, I would need an echocardiogram and I would need to see the cardiologist the next day. Unfortunately I would need to spend the night.

I lost it. I wanted to go home to see my kids. I wanted to go pick apples, play catch, watch football from my couch. Hell, I felt good enough to want to make a pot roast. Now I was terrified that I had traded early stage breast cancer for a permanent heart condition, and that it was my fault, having "chosen" the adriamycin. I started to cry, which should make a person feel better but always makes me feel worse because I think it is a sign of weakness (for me, not for other people). I thought the doctor would cry too. He was holding my hand, asking me about my kids, telling me I would be ok, even if something had happened to my heart they could treat me, and then he said something I couldn't believe. He said "This sucks. It's terrible to have a chronic medical condition. We can treat this, but it does suck and I know you want to get out of here and go home."

Did a doctor just admit to me that something that was happening was not good, and agree that positivity wasn't the right course of action? Unbelievable. And I wanted to congratulate the guy for being such a human being, but all I could think was, man, you will never last here. Not in the CDU, where so many people probably never make it out. Not in the trauma center, where there are little kids coming in from accidents, where you see so much domestic violence, shootings, burn victims. Did I affect him so much because I'm young, my kids are little, and having both cancer and a heart problem seems insane? Does everyone affect him like that? How does he get through the day?

Once I stopped thinking about him I wondered how I would get through the day. I was so upset. I was just sobbing, thinking about my choice to do ACT rather than TC chemo. I would have been done already, only 4 infusions, it isn't worth the heart condition just to avoid the permanent hair loss. I cried so much talking to my mom and Gabe on the phone and I felt so alone. I missed my kids. Through two surgeries and all this chemo I have never spent a night in the hospital, not in 5 months. I just couldn't believe yet another damn thing was happening that shouldn't happen to me.

When talking to Gabe I told him to start thinking about what we haven't talked about yet: what to do if I'm not around. At that point I just didn't think it would end well for me. The odds seemed so against me, as I am always on the bum end of the statistics. I figured I should update my will, write those letters to the kids, make sure Gabe looked into some nanny options. He said, Kate, we can't afford that. I said sure you could, with my life insurance. He started crying and I realized that conversation was less than fair to him, and yet I just felt so defeated I figured I should stop thinking about myself and worry about the little people for a change.

When talking to her on the phone, my mom reminded me that I had many reasons to choose ACT, not the least of which was that the fertility counselors at Northwestern told me that ACT left me with a less than 20% chance of permanent menopause, compared to up to 70% for TC. They advised me that at my age, menopause would be bad because of how it would leave me susceptible to osteoperosis and ovarian cancer. My chemo nurse told me that while some people are allergic to the solution they use to dissolve taxol, on the other hand, some people are allergic to taxotere itself. Since I know I would probably be one of those people, I feel like I did make a good choice.

Especially since I don't think adriamycin has anything to do with my heart problem. I stayed in the hospital and my echocardiogram was normal, meaning the heart muscle hasn't been damaged, which is what adriamycin can do. Both the oncall doctor and the cardiologist said that you don't see those AC affects right away--it would happen much later usually. They thought it might be taxol. The second oncall doc from Northwestern who talked to me said that people can get a very fast heart rate from taxol. The warning information on the drug manufacturer's website lists heart palpitations or fast heartrate as a rare side effect; it warns that in very rare cases pacemakers can be needed for taxol patients.

No one--no one! ever mentioned this to me. The fact that I had an allergic reaction might make me more susceptible. That water retention was another clue. Regardless, the upshot was that my heart seems generally ok, but I was put on beta blockers. I should take these through chemo, and maybe afterwards, but I might not need them when I'm done. At one point on Sunday morning I was bored out of my mind, lying in my tiny basement room in the hospital, reading the paper. My heart was leaping again, and I asked to have the monitor screen turned on so I could see the rate. My hear rate was 118 while I was lying down. I hadn't gone anywhere in a day. They found that alarming, to say the least. It went down again, but stayed down once I took the beta blocker. These drugs are annoying--I have a very dry mouth and throat from them, and they can cause hair loss! I wouldn't worry about that except my hair is starting to grow back. It's not obvious, I know, but trust me.

I had a few comforts in the hospital that made the whole damn ordeal a little easier. Once I got over my fear of a heart attack, I could enjoy Gabe and Lenny visiting on Saturday night. She brought me Nancy, my stuffed turtle that she picked out for me at the aquarium. Nancy was to keep me company. Lenny brought me two books she made, complete with picures and storylines. The whole family visited on Sunday and the entire staff gushed over the kids, their red hair, and their general cuteness. Augie alternated between trying to escape and trying to trash the room. And the sensitive doctor came back, for some unknown reason. I had seen the cardiologist and knew what I needed to do. He just seemed to want to see me, to see if I was all right. He said a bunch of reassuring things, held my hand again, stayed too long. He told me he knew what it was like, that he had been in the hospital, he had heart trouble at one point and was on medication, and he was young and healthy. It was scary. Yes, yes, it is.

Try to tell that to my oncologist, who seems impervious to human emotion. I don't even know if I should go into that drama, it pisses me off so much. I emailed my chemo nurse and the physician's assistant because I was so upset on Saturday, and I didn't know if I could continue chemo or what the hell was going on. I wrote a long email, followed by another shorter one with more info, knowing they wouldn't get it until Monday. But I had to document what I was being told before I forgot, and they are impossible to reach on the phone when they are "in clinic." I followed up with voicemails on Monday, saying I didn't know what to do, the cardiologist suggested that if I continued with chemo I see another cardiologist at Northwestern or see him--what was the plan? They set me up for an appointment with my oncologist today.

If it is possible for two doctors to be more polar opposites than my oncologist and the oncall guy at the hospital, I would be surprised. I saw a resident and went through the whole saga with her. Then my doc comes in and made me feel like I was annoying because I had contacted so many people about this. Well, imagine how annoyed you would be if you were 35, had two small kids, and breast cancer and a heart problem to boot. He told me I was fine, that it didn't appeair that I have anything wrong with my heart (based on the reports I gave him, not on records). He implied that I didn't need beta blockers and they just kept me in the hospital because that's what happens when you complain of heart issues. I said no, that's what happens when they FIND heart issues. Then he indicated I wasn't following his recommendation by doing ACT instead of TC. But the clinical trial he wanted me to do was ACT chemo for 6 months with avastin thrown in the mix. I asked outright about three times back on June 14: "are there any major side effect differences?" and was told there were not. I was left to make the difficult decision on my own with very little information, though I did contact the chemo nurse and get some information from her before I had to decide. I never received an explicit recommendation; I remember blogging about how frustrating that was!

But anyway, I said, that doesn't matter now. I wanted to say, where the hell do you get off trying to tell a young woman with cancer she did the wrong thing? Are you going to thumb your nose at me next and say nyah na nyah na? He went on to indicate that taxol doesn't cause heart problems, end of story. I didn't even bother mentioning the fact that someone else at Northwestern told me it did, or that the manufacturer says it can. I realized that I have talked to many people like him before, and they never change their minds because they are never wrong. He said "many things" can cause a fast heartrate, including allergic reactions, anxiety...wait, allergic reactions? Is that what this was? A delayed allergic response? I knew he couldn't deny I had an allergic response since the chemo nurse saw it with her own eyes. He said it was rare to have the response be delayed. I said, well, is it normal to have the allergy on the 2nd infusion rather than the first? No, he admitted, that is very rare. And that's what happened to me right? Right.

But I'm fine, I look fine, that hospital visit was unnecessary, I will continue chemo, and he would refer me to a cardiologist AFTER chemo. Well, ok then. I will do chemo on Monday if my counts are ok, see if the allergic reaction is too bad, take the beta blockers, see what happens with my heart rate and breathing, and go to the other hospital and see a cardiologist without my chemo people knowing I did it. If I can get through all 8 chemos, great. Then we'll see what else I can do.

I would like to go to someone who is not totally dismissive of my concerns, who will not be unavailable for months to talk to me or give me confusing information. I asked if there was anything else to treat hot flashes besides the antidepressant they had prescribed me. No, nothing but estrogen. Oh please, I wanted to say. There are a million things. Remember when I worried I would have seizures due to my extreme insomina? I feel like everyone thought I was just nuts. Just like people on AC don't have diarrhea or lose weight. Just like no one throws up on chemo anymore, no one has WBC issues on taxol, no one feels bone pain from neupogen, there are no side effect differences for these chemos. I wanted to say, you can't tell me there are no differences and then blame me for choosing one over the other.

I feel like he wants to fight me, to test me. I just don't have the energy for that crap. Moreover, just because I have had a thousand breast exams doesn't mean I appreciate having one where the doctor just removes my gown himself, moves me around into different positions and feels my boobs ALL WITHOUT SAYING A THING. It's creepy.

I have had almost 30 years of knowing my body better than any damn doctor, and I'm not going to stop now just because he thinks cancer should scare the shit out of me. I am NOT just grateful to be alive, because other things matter too, and I do NOT believe this chemo is saving me right this minute. I was told, 85% chance of this never coming back if I only did surgery. Chemo was to bring me up to 95%, radiation would cover the rest. I agreed to it because I love my life and my family. But the thing that saved me was not his poison, it was me, feeling a lump that three doctors thought was nothing, and dealing with it.

When I was 8 and the neurologist had me in the hospital for a week doing guinea pig tests on me, he finally conceded his defeat. He told us, I guess her body is smarter than her doctor. And he pronounced me "cured." Well, he was wrong on that too, but I had 2.5 years with no seizures and no poison. After my gallbladder surgery I ended up in the ER with heart palpitations and blood pressure that was about 200/120. I couldn't take the heavy painkillers, so all I had taken was tylenol. The doctor there told me "we give tylenol to babies" and tried in vain to find another reason. When my primary care physician called me, at home, from his house, that night, he said "why the hell were you in the ER?" I told him, and I told him what the doctor said, and he said, I quote, "That's bullshit. It was the tylenol, reacting with the anesthesia. You just can't take anything."

My current GP wants me to do a full allergy markup when I'm done with cancer treatment. She doesn't know what to do with me. I'm ok with that. Just admit it. I'm a tough case, fine. In the ER this time I found out I have a slight bladder infection (chemo, again) and I got the one antibiotic I can take. Well, maybe there are one or two others, but I am allergic to most of them. Remember the delayed allergy to the antibiotic after my 2nd breast surgery? Three days later it happened, and the breast center folks just thought I must have gone bra shopping and picked up some bad lace.

My body has resisted this chemo every step of the way, and I am not the only one. I recognize that I have not had everything happen that could have happened, and I'm glad for that. I have not needed a blood transfusion. I have my fingernails. I have no significant neuropathy, not yet. I have my eyebrows. My skin is a normal color. As the oncologist says, I look fine. I wanted to bust out my favorite cancer quote, that another triple negative breast cancer survivor told me she used when people kept telling her how great she looked:

Well, I don't have cancer of the FACE.

I will end this endless blog on two notes. One, I guess I can see it as my personal mission to prove that looks are deceiving. Did I "look" like a child who had 100 seizures a day? Do I look like a person who at one point was bound to a wheelchair and had to relearn how to walk? Do I look like a redhead? If I wasn't bald, what would I look like exactly? A 5'5", 115 pound 35 year old who likes fancy shoes, probably. What the hell does what you look like have to do with anything?

Second, I am damn glad, proud even, of one chemo side effect I don't have. I'm glad I don't have any chemo brain. They have made me change everything else about myself, but they haven't taken my brain or my personality, for what it's worth. I'm still pissed off a lot of the time and I still don't trust figures of authority. I still don't believe that these doctors are smarter than me, no matter how many degrees they have. My memories are intact, so when they tell me things, they should know that
I am paying attention and that I will remember. I'll throw it back at them if I need to, and I'll write about it, because I still can.

Friday, September 24, 2010

Day 141: Taxol #2

As most people know, I successfully got through my second taxol infusion this week. I wasn't expecting it--on Monday I told Gabe to go to work, since there was no reason for him to waste more time off just for me to be sent home after getting another neupogen shot. That's not what happened, though. Apparently the excruciating bone pain I felt last Friday was the neupogen kicking my WBCs into overdrive. On Monday, I had a count of 25,000 WBCs, with a neutrofill count of almost 9,000; it had been 200 on Friday. So, needless to say they infused me. I alternated between being thrilled the treatment had only been put off 5 days and dreading doing another round of chemo--my body was started to be happy with me for not doing it again, for tricking it into thinking we were done.

Once I accepted that I needed to do chemo and took off my cowboy boots and gave the nurse my arm, things didn't go so easily. I had two IV attempts again. The first one was relatively painless at least--it just didn't work. I had no allergic reaction with the first taxol, but this time--of course the one time that no one was there with me--I got sick in the middle of the infusion (unheard of! they told me) and while in the bathroom, got very hot and noticed that I was essentially turning purple. I ran into the infusion room and called the nurse. She thought I would be ok after the first time so she wasn't watching me closely this time to see if I reacted. She saw me, said, well, you look a little pink, yanked the taxol, pumped more steroids into me, made me wait half an hour (during which time I got my free acupuncture, while lying on my side with an iv in my arm) and then started the taxol up again. Gabe arrived after all of this drama, and the whole thing turned into about a 6.5 hour affair. I'm scared I will have a worse reaction for the last two tries, as my body builds up immunity to the solution. This taxol is definitely no walk in the park. At least this time it didn't hurt quite as much going in.

I got the neulasta shot the next day, and on Monday night and Tuesday I actually felt pretty good, in spite of new insomnia. I didn't get one minute of sleep on Monday, probably due to the steroids, but also because I am having horrific hot flashes now that menopause is in full effect. This is not once or twice a night. It's like every half an hour sometimes at night, making sleep impossible. My body did not have 20 years to slowly lose its estrogen. I had a period on September 1. Now, I am in full blown menopause--just like that. It really, really makes me sad. And it's hard to deal with the day to day effects. Hell, if I hadn't been in the bathroom getting sick during chemo, I might have thought my toxic reaction to taxol was just an extreme hot flash, and I might not have gotten the steroid in time. I have no idea what would have happened then.

Tuesday night I went to water aerobics for the first time since right before my surgery. It's always been me and the old ladies, with a few younger women thrown in. They have treated me like a granddaughter, seen me through two pregnancies, always ask about my kids. This time, no one wanted to look at me, or talk to me. They recognized me--I could tell by the shocked looks. Finally at the end of class, one of the women I've known through the years, who is maybe 10 years older than me and has 3 boys, came up to me and said, "you have such a beautifully shaped head. I applaud it." When I said thanks, she said "I didn't wear a wig either. They were too hot and it wasn't worth it. Regardless, you look great. You have a great head." Breast cancer, I asked? Nope. Non-hodgkins lymphoma. Then she gave me a referral to a woman at a local health food store who had some good creams for radiation.

Who knew? This cancer shit is everywhere. I really appreciated her saying something--it's the worst to know everyone notices you and people are too spooked to say anything. But of all the times to wear a wig, it really doesn't make sense at the pool! That was the one benefit--no more worrying about water in my hair, no need to wash the chlorine out at home. Just towel dry that head and go. Anyway, now that I've had cancer I know how I will react if I see a suddenly bald woman. Just acknowledge it and keep doing your jumping jacks. Life goes on.

It's nothing short of amazing that I did water aerobics that night--I did it last night too. On Wednesday, I felt like death warmed over. My body hurt so badly I can't describe it. I was so nauseous and weak, with a terrible headache, that I felt as bad as I did on my worst a/c days. I hardly ate anything and couldn't have dinner with the family. I know now that the neulasta itself has an extreme affect on me, as I didn't feel nauseous AT ALL on the first taxol when I didn't get the shot. I have asked permission to not take neulasta after my last chemo, but to let my WBCs go up on their own before radiation. That could push off my radiation schedule, but at this point it's not worth the extra suffering. One of my issues on Wednesday could be that I gained 3.5 pounds in one day after the infusion--must have been water retention since I hardly ate anything. I then lost 5 pounds in a day. Severe dehydration, perhaps? Yikes.

Taxol does enough on its own; neulasta just makes the symptoms worse. I feel very stiff and weak--not fatigue-weakness, but muscle-weakness. And I'm pretty strong for my size, and I was pretty active even on a/c--I walked and went to the gym. I'm still walking, and I can do water aerobics, but my muscles feel so weak I don't know if I can lift even the 8 pound weights. Between this and the menopause, it's hard not to just feel old.

I now resent all the jokes people make about middle aged women with hot flashes. It is no joke, let me tell you. You literally feel like you're on fire and it's hard to breathe. For me, it's even weirder because while I can sweat some now, I am still not sweating like a normal person, so I don't cool down. And then my bald head feels really cold. This had better be temporary. Why the hell do we spend so much time complaining about our periods? The alternative is a lot more annoying, I'll tell you. My sex drive is so drastically different now, and everything just feels different. It's sad, that's it--just sad.

Temporary, I hope, just like this hair loss and muscle weakness, right? I don't have neuropathy yet, though last night I was pretty tingly in the hands and feet. My nails are still there; I painted them black to help keep them. I like how it looks actually. Gabe painted my toes, and I kind of like that unexpected sight on my feet too. My eyelashes are trying to leave, though most of my eyebrows are still there. They seem to be in some sort of limbo.

As am I. I just feel that way all around--like I'm in limbo. Waiting to see if I can do the next chemos, waiting to see what they do to me if so, waiting to find out if these side effects are permanent, waiting to see when I'll be able to work a normal schedule, and mostly waiting to see if it made any damn difference. At the end of 2010, most likely, I will be done with cancer treatment. But will I be done with cancer? Could this highly recurrent triple negative bullshit come back to haunt me in the next three years? I just don't know if I could do all this again. And I'm not even finished! I haven't even started radiation. So I guess I shouldn't go there.

October 18--that's my new goal date. Two days after our anniversary. I'm still getting mapped for radiation on the 19th and I want to start radiation on November 1. It's up in the air though. If I don't get the neulasta, my WBCs will be at risk--in the middle of flu season. I am already exiling myself from Lenny's school because we found out that someone there had chicken pox. My kids haven't been vaccinated yet, and can't get vaccinated while I'm on chemo. They can't get live flu shots either, and I can't be around people who have had live vaccines. So while I feel better today and want to go out in the world a bit, it's scary. My body might be less fine that it appears to be--it's strange because while I feel very old, outside of my baldness, I don't seem to LOOK that old, do I? At least that's what I'm telling myself! Don't contradict me, please. Us menopausal women can get testy.

Saturday, September 18, 2010

Day 135

This blog won't hold much new information--I just need to get some of this out of my head and into the ether before I lose my mind. I hate being in limbo, not having a plan, and having my small probably insignificant little goals squashed like so many bugs. There's nothing that makes me crazier.

Just when I thought the end was in sight, I can now honestly say that I have no idea how long chemo will last. I went in yesterday with the attitude that yes, I would be able to do chemo today! And boy was that crushed, with some ferocity in fact. My numbers were even worse than on Wednesday--all of them. I guess I could have understood if they hadn't improved enough, or at all, but to get worse? Talk about depressing. The number they really care about, the neutrofills (no clue how to spell it) went down to 200 from 300. The lowest that is considered normal is 1,500, though they would have treated me at 500. This is so low that even the staff was surprised. I wanted to act like this was expected, but I was so devastated again. I tried not to cry but I just broke down and couldn't stop.

The nurse, who wasn't my nurse and also wasn't the one who was supposed to be seeing me, said, I know I shouldn't tell you it's not the end of the world because it feels that way to you, but this is very common. She told us that people are held back from their treatments for long periods of time for this problem, that it's not due to anything I could do, it wouldn't affect the way chemo worked on my body, etc. I just couldn't really hear any of that. I asked, do you know how little my kids are? My son doesn't even remember what it's like to have a normal mom. I really wanted to be able to be done by Christmas. She told me he wouldn't remember it. She was trying to make me feel better, but every time I hear that I think, it's true. He might not remember me.

We've had so many special occasions marred by cancer this year, and for the most part we've just accepted that this is a lost year and that next time hopefully things will be back to normal. Augie's first birthday, mothers day, fathers day, Gabe's birthday, my birthday; now it's going to be Halloween, Thanksgiving, Christmas. It's not that we didn't enjoy these events as much as we could. But each little milestone that I could think of in my mind that would be post-chemo or post-treatment were the things that kept me going, and now they will all be cancer-treatment moments.

Gabe said he felt cocky on Tuesday, thinking that we had less than a month of chemo left. I was thinking we could at least go out for our 6 year anniversary on October 16, even if I felt like shit, knowing I was done with chemo. Now, I don't have any idea when they will treat me next, much less how I will react after each dose, or when this will all be done. On Monday, I go back, get more blood tests, and if the numbers are ok I get chemo. But the nurse yesterday thought that was pretty unlikely to happen, so I need to psych myself up for the disappointment. It's just too hard to feel hopeful and have things crushed when it's happened so many times. Apparently, once your WBC count is down, it takes a lot to get it back up again. The key is for it to not go down in the first place.

And this is what is killing me. My numbers were great on A/C, the supposedly harder part of the treatment. Harder in some ways: insomnia, nausea, anorexia, fatigue. But I got through the damn thing, due to the neulasta. If my doctor had given me the neulasta after taxol, this would probably have never happened. So most people don't need it. Clearly, I have not responded to treatment like most people. Even if I had, what's the harm in being conservative? How many breast cancer patients have two kids under the age of 5? Give me the damn shot. Some bone pain is better than putting off my treatment indefinitely, or putting me in a situation where I can't do anything without risking my life.

Right now I'm not supposed to go into work, take the kids into daycare, ride the train, go to the movies, be in crowds, or do much of anything. So you take someone who is really depressed by the chemo being put off, isolated due to cancer anyway, and say, have a great weekend! By yourself. In your house. It's not the end of the world! What was the normal world like anyway?

The nurse seemed to think that I should have received the shot as well, though she didn't say so outright. She said my doctor was "unconventional," that he liked to do his own thing. She then tried to spin that as a positive, saying, you should normally get done with treatment earlier. Well, clearly that's not the case. Am I getting good treatment at this world class cancer center? I'm starting to doubt it. I asked the nurse yesterday if getting a second neupogen shot would increase the bone pain that I had. She was surprised anyone had told me that it wouldn't cause pain, as that's very common. I told her that if I had to get multiple doses of that shot, plus Taxol eventually, and then neulasta--all of which caused bone pain for me--I was worried I wouldn't be able to walk. She looked at me and said, yeah, you will be pretty achy.

Pretty achy. Yesterday I was only dealing with the two shot doses since Wednesday and I felt like my bones were put in a vice and were being slowly crushed. My hips, lower back, tailbone, and the tops of my legs hurt so much I couldn't sit down or lie down. I had to walk continuously in order to be able to stand it. It was like back labor, but everywhere. The physician's assistant prescribed a pain med for me that she thought would work, since I can't take most of them. She was being safe with the small dose--I sure didn't have any side effects. It also didn't do a damn thing.

The pain is better today but still there. There's a part of me that's so intent on doing chemo Monday, though I know I can't expect that to happen. Then there's a part of me that is terrified of doing it, since I want to be able to walk and take care of my kids and I worry that getting taxol so soon could make me incapacitated.

This just honestly seems so stupid. I was so healthy just a few months ago. I still feel pretty healthy, except for that crushing pain I had yesterday. How is it possible to be so close to the tiniest thing killing you when you feel fine? And why is this worth it? It just seems outside of the realm of normal to have this be the response to the type of cancer that I had.

This is the thing I haven't told the doctors or nurses. There's another reason I need chemo to start up again. It's not just so I can go back to looking forward to all the things I was looking forward to before (like having a few weeks of my favorite month, October, with no cancer treatment, going apple picking this weekend, starting radiation November 1, celebrating Christmas and the end of treatment at the same time) that now can't happen. It's not just because now I am in total limbo with work, because doing chemo on Mondays will make it nearly impossible for me to work any kind of normal schedule, and being so neutrofill deficient means I can't go into the office. It's also that the longer I go between treatments, the more they put me off, the less likely I am to ever go back.

I'm thinking about just giving up. It might seem irrational, and I know I can't make that decision in the emotional state I'm in right now. But it doesn't seem like such a terrible idea. I'm young. I need to be able to function. I can't be a full time cancer patient. I have a job and little kids. I had a very low stage cancer that never incapacitated me or caused me pain or suffering. This treatment could have permanent effects that would severely compromise my quality of life.

I suppose I could also end up just fine and normal, and I've been looking forward to that, but it seems so far away. I've started having night sweats and boy does that piss me off--menopause NOW? If I had just chosen the other chemo I would already be done and maybe that would have never happened. I know I should remember that the other chemo would have made permanent menopause actually much more likely than this one, but still. I've gained most of my weight back and I fear that I'm just going to keep gaining due to these hormones. I'm sick of being bald. The novelty has worn off and it just seems ugly to me now, though still preferable to wigs.

I needed those goals to cling to in order to make myself do this. The little holidays, the schedule for radiation, the treatment being done in this calendar year. Would it be so bad to quit chemo and just start radiation? I've done 5 after all--that's better than nothing. I suppose I will do another one, but if the bone crushing issue is too much, or if my WBC count goes down again, I think I might be done with 6 and not go the full 8. I recognize there are folks reading this who think I'm a total idiot for even considering that. I might even consider myself to be an idiot if I stop, but the thought is definitely there.

The medical folks seem so surprised at how my body is reacting. I knew this would happen though--I've known since I was 8 years old that my body and drugs don't mix. It's why I shrug it off when people make fun of me for what a straight edge I've been most of my life. I've said it before, even in this blog. I could never do drugs. They would kill me before I could ever enjoy them. That's just how it is, for better or worse. Maybe it's worse now because I'm small, and their doses aren't conducive to a 115 pound person. That seems unlikely though--it's probably just me. I might be better off fighting this with whatever health I have left and some luck.

I can't imagine that soon I will be stuck here all the time, out of work on disability, bored, when just months ago I was multitasking my life away with a happy little baby pulling my long hair and asking to nurse on my breast that held these three small tumors that would change our lives so drastically. It's the distractions of work and family that have kept me focused on getting through this. Now I might need something else. I can't do crowds, and I can't be around sick people, but that should end soon hopefully. I will need some adult conversation, and if anyone wants to go out for a drink, I could always have a ginger ale. That won't be so different from the past after all, when I could order one beer and drink it for three hours. The idea of being social is something to look forward to anyway, as October 13 was. Now that's just another day that can't come soon enough, and 2010 is just going to seem like the year that happened in slow-mo, with its viscous, trudging weeks.

Wednesday, September 15, 2010

Day 132: No Dice

I think it was in the blog before last when I said that I felt proud of my numbers before the last chemo round, and cautioned myself that I shouldn't take it too hard if things didn't go so well in the future.

Well, things aren't good, and I'm being hard on myself. I was sent home from chemo today because my white blood cell count is almost zero.

I saw the look on the nurse's face and I knew. She looked a little devastated herself. She said that there were some options--they could give me a shot of neutropin and some antibiotics and try anyway today, though she would have to ask the doctor if that was ok. Or, they could give me the shot and send me home and I'd have to try again on Friday, when my regular nurse is not there. The doctor (well, the physician's assistant) said no to going ahead today. I guess they would do this sometimes--but not for me. You are just too sensitive, they said. Your body reacts too extremely to the chemo and to all drugs. They tried to put a positive spin on it by saying that the chemo would probably really work on my cancer.

Or, it will do its job on the rest of me. Here I was, getting over my cold, no fever anymore, feeling ok. And yet I have such a low white blood cell count that any minor infection could essentially kill me. I saw the oncologist yesterday. Nothing new to report there--he doesn't think I need a bone scan. I would've written more about the visit if this hadn't happened today. I don't feel like it now. Anyway, I asked him specifically why I don't have to take neulasta with taxol. Because you don't need it, he said. It doesn't affect your counts the same way that A/C does.

The nurse agreed that that is true--98% of the time. Have you noticed a theme where I'm in the 2%? It's just so damn depressing. Now I will have to go through this all again, wait for the numbers again, and if I'm allowed to get chemo on Friday, I will take neulasta the next day. That coupled with taxol will probably give me such bad bone pain that according to the nurse "we are going to have to figure out some kind of medication to give you."

It's hard to explain to someone who isn't doing this how devastating it is to be sent home from chemo. You'd think I'd be glad for the break. But you get all psyched up, you spend the sleepless night, you pack your bag for the long infusion. You worry about the numbers. WBC is the worst, because it's the most important and because there's not a damn thing you can do--no diet, activity, nothing--to boost it short of these specific drugs. And you have no idea if the count is low, because you don't feel any different. It's like walking around with a time bomb. Boom! You're in the ER for a week. You get ready for all of that, you take a day off of work, and it's all for nothing. And you just sit there and cry, because the magic day of October 13 is even farther away.

If I successfully do chemo on Friday I will probably stay on schedule to finish on October 13, since they will make me take neulasta from here on out. If not, I will need to do it next week, and the likelihood of finishing by Christmas becomes pretty improbable.

I'm getting the feeling my body just isn't made for this. Cancer came up out of nowhere--three tumors, a rare type, resistant to most of the treatments. The one treatment available is trying its best to knock me on my ass. And now the next thing I get to look forward to is getting a new nurse who may or may not have a clue how to put an IV in me. And that's if I'm lucky and my numbers improve. Right now the one count they're looking at is 0.3. They will treat me if it gets to 0.5, even though the low end of normal is 1.5.

I'm not working, because I really shouldn't be at work, or on the train. I should have just gone straight home but I was too upset. I went shopping on the mag mile and then drove myself to chinatown for lunch. I'm home now, and will be working from home tomorrow. But in the end, I think this means I might be taking disability. I made it through 4 1/2 months of working with breast cancer, and maybe that's enough for now. Of course this doesn't help me figure out what to do about my kids. They're going to be germy throughout the whole fall season, and I can't exactly avoid them.

I really needed this to go right today, and honestly I can't think of anything to say to end this blog except that I'm tired. Damn tired. And that cancer sucks.

Sunday, September 12, 2010

Day 129

Another week, another group of days where I didn't want to sit down and write. A lot has been going on, some related to cancer, some not, and there's too much to get into here. I do have to give us a shoutout for going to see Disney Princesses on Ice this morning rather than watching the first Bears game of the season. (Unfortunately, we arrived at my mom's with enough time to see most of the second half of the game, including that horrific attempt to score from what, the six inch line? Four times? With nothing to show for it?) Lenny was just mesmerized by the entire event. We were smart enough not to bring Augie along. I don't think the United Center could withstand him. And I was dreading the idea of princesses mixed with ice skating and Disney merchandising, but every time I saw how entranced Lenny was I wanted to cry. She just loved it.

I'll tell you though, this crying thing is getting old. I want to blame changing hormones, but I really think it's just cancer. There's always mortality right in front of my face, regardless of how ridiculous the scenario is. Why do all the princesses DIE (sleep, get their fins ripped into legs, whatever) before they get to be happy? Why does every single one of them have waist-length hair (except Snow White I guess)? Why are these princes such morons? You know, the usual deep questions.

Breast cancer is always in my face too. On the cover of the Sunday parade, for instance. In Glamour magazine. Don't I just read that for fluff? I got pissed off at this article that was outlining myths about breast cancer. One is apparently that young women are getting diagnosed more often. Not true! It's been the same for 25 years! OK, is Chicago an outlier or something? Because to me it seems like this shit is everywhere. I was annoyed to find out that I am not only in the 5% of breast cancer diagnoses that are for women under 40--it's actually down to 2% for women 34 and younger. So whenever someone tells me the odds are in my favor and I don't act too happy, it's because of odds like that and the triple negative thing. Also, there's some nonsense in Glamour about how many women with early stage disease don't have to do chemo. Bullshit. Especially for young women--they seem to always want young folks to do it. Then the woman who runs the Komen foundation went on to say that chemo isn't as bad as it used to be. Something about how while some women lose their hair and some women feel some fatigue, life goes on as usual.

Some? Hey if there are women out there who have done chemo for breast cancer with no hair loss and fatigue, let me know, so I can buy some of what they've got. I've never heard of that.

I spent the week increasingly paranoid about this bone cancer issue, and I completely lost my mind on my medical team when I learned that my oncologist was canceling my appointment to see him right before my next chemo round Wednesday. I saw him to get my poison prescription back on Gabe's birthday on June 14, and since then I have seen him a total of one time. That time, I waited two hours and saw him for two minutes. I like the physician's assistant and all, but please. I am going through cancer and chemo and I'd like to see an actual physician to talk about it.

When I brought this up, I was told I would get to see him on November 24, and that did it. I should be done with chemo in mid-October. How does that help me? Several angry emails and phone calls later, including some calls to various people asking for a new doctor recommendation, and I got an appointment for Tuesday. I guess the squeaky wheel does get the grease. Now, who knows what this will mean. Will he be able to tell if my spine has a tumor? Will he be able to reassure me as no one else has been able to do that I don't have bone cancer? Will I be more pissed off than ever after waiting hours for this appointment and then getting five minutes of his time and no answers? Time will tell, I guess.

I am definitely not looking forward to the next taxol infusion. It really did hurt like the devil going in, and I worry about what that means when they reuse the same vein over and over. I've been losing more non-scalp hair, and I'm somewhat desperate to keep at least my eyebrows. You know how it hurts when one eyelash gets in your eye? This is like that, all the time. I'm even losing arm hair, which is no big loss since no one could ever tell I had any to begin with, but still. So far I have no neuropathy and my fingernails are in tact, and the bone pain, while bad for several days, was nonetheless not debilitating. The things I feared the most after the first taxol haven't happened yet, and I just want to keep it that way.

Otherwise, I had my first hospital scare this week. I've had horrible allergies and I thought that's what was going on this Friday. Both kids were at daycare (Lenny asked to go, since she's started doing kindergarten work at montesorri and LOVES it) and it was my day off, so I had all these delusions of grandeur. I went through a ton of clothes, getting rid of everything size six and above, and I went for a walk. I had all these other errands planned. And then I just felt horrible. My whole body ached, and I wondered how all but the spine pain go away for days and then return with such a vengeance. Damn taxol. Then I took my temperature. 99.5. Hmm. For someone with a normal temperature of 97 or lower, that was bad--not really, but it is for someone on chemo.

I called the breast clinic and they told me that if I got to 101, I would need to go to the ER. If I got to 100.5, and it didn't go down right away with motrin or tylenol, same deal. After much misery, I was scared to see 100.4 on our cheap thermometer. I guzzled some tylenol. No hospital for me, damnit. No putting off this chemo round just for some stupid cold. It went down, thank God. I normally don't complain about getting colds, but this time I was pathetic. It was such a gorgeous day, and there I was, useless, AGAIN. I'm sick and tired of being sick and tired, as they say. I would like to fool myself into thinking otherwise, you know? So that's what I have been doing to some extent--fooling myself. I went to book club last night even though I didn't feel good and I ate... a hamburger! From the grill! With charred carcinogens and everything! And I made brownies with homemade frosting and ate some! And I talked to people, successfully I hope, and then I...collapsed.

So here's to hoping I'm 100% better and I get to do chemo on Wednesday. Since I am more than halfway done, I thought it would seem like the home stretch. But it seems a thousand years until October 13 right now, and I'm losing my interest in writing about this stuff to some extent. To make it more interesting, I thought I might distract myself by posting some more musings on being bald. Here goes:

1. This whole country is obsessed with hair. Half of women's magazines are devoted to it. Since I'm bald, none of my time is devoted to hair. That might make me feel better if I had ever dedicated time to hair before, but still.

2. The advantages to being bald while female often relate back to other people's discomfort with it. For example, no one--no one!--will try to sit next to me on the train. I don't even have to put my bag down next to me. Someone will start to sit, look at me, grab their stuff and move on. People also don't talk to me in the elevator. But most salespeople are especially nice to me.

3. There are some definite social constructs around being a bald woman. For example, while I wouldn't say I've seen a lot, I have seen several bald black women walking around downtown Chicago. I'm not talking short hair, or a very short fade--I mean bald. And interestingly, I have never thought "cancer" in these cases. No one else seems to take much notice either. But the only white or Asian or Latina women I've seen without hair are within the confines of Prentice Hospital, in the cancer ward. I think that's part of what makes me so noticeable. What's up with that? I don't get it. The other day I was walking to the train and a very striking young bald black woman stopped me and said, you look so pretty! Well thanks, so do you, I said. I wondered if she thought I had cancer, or was just working it on purpose, as I think she was doing.

4. As the weather cools, my head freezes in the outdoors. I think the only way bald men can stand it is because they have more body heat in the first place or something. I get cold!

5. I officially can't stand wearing wigs. I wore one today to the Disney thing, and felt like such a fake the whole time. But again, in the winter, I might not have much choice.

6. I see how pretty hair can be a crutch. I try a little harder to look decent now. I didn't always have to do that before. If my hair was looking good, and it often was, I figured that was good enough. Well, now I have to do SOMETHING to not look like a guy. Note the pictures here. I am not trying too hard and I think I look pretty masculine, unlike my daughter who looks like such a GIRL even while making funny faces. Oh well.

7. Hats don't fit on this tiny bald head. They just fly right off in the wind.

8. There's really nothing interesting left to say about being bald, including the last seven things I've said.

There might not be anything interesting left to say about cancer either, but I imagine that's wishful thinking. Wish me and my spine good luck!

Tuesday, September 7, 2010

Day 124

It seems that summer has come and gone without it really having happened in the first place, at least at our house. I remember when summer was a different creature for me, back in the days when I was in school, even in college. I always worked in the summer, from the time I was very young, but at least the pace was different. I can’t remember when summer meant sleeping in—maybe when I was 11 or so? It’s been a long time. My kids will never really know the joy of the carefree summer, since they will always need to be in school or daycare or camp or something, due to our work schedules. But at least the summer rituals usually apply—swimming, grilling, staying up late to catch fireflies or go to the park, eating popsicles on the steps, hanging the laundry on the line.

Did I do any of these things this summer? Did my kids? I didn’t, not for the most part, as I always seemed to be recovering from surgery or having side effects of chemo or something that kept me apart from the world. We did go on vacation in the early summer, so that was good. Otherwise, I had my first grilled food of the season this past Sunday and I put on a bathing suit the other day to sit in our back yard, just to remember how it felt. Gabe did many of the above things with the kids, or with Lenny at least, but not nearly as much as in a normal year. The loss of this summer makes me wish that it was possible for one of us to be home more. It’s not, of course, unless someone wins the lottery at our house, and it’s hard to win when you don’t play the game.

The summer is only the tip of the icerberg. I’m starting to really worry that the kids resent me, or have just lost too much due to my cancer diagnosis, but they’re too young to really tell us what’s going on. I have become very concerned about Augie. He seems to have lost the few words he ever spoke, and his aggression is getting worse. He is very cuddly and loves people and he’s mostly happy. I’ve just been devastated with worry about him having autism or some other issue, but I know he also might just be reacting to how things are at home. I am going to have him evaluated, regardless.

Lenny is still acting out as well, though she’s gotten a little better. She doesn’t sleep right before or after I have chemo, and she still defies me and throws tantrums, which she never did before two months ago. And I wonder, am I that bad? Have I screwed things up so royally at home? You’d think you’d get a free pass from parental guilt with cancer but it is horrible thinking about what it’s doing to the kids. It’s worse to realize that we might never know how they would be different if they hadn’t had to deal with this.

I thought I’d been better this past week. Taxol has not been fun, and I felt very weak on Saturday in particular. I got the bone pain for sure (more on that later) and it felt like having a really bad flu, with aches in literally every bone in my body (I’m talking toes and fingers too). The day after chemo, I was depressed to find that all of my fingernails were killing me. It felt like I had the bristles of a hairbrush under each and every one. I thought that didn’t bode well for me keeping my nails. I cut them very short, and so far they are still there. They haven’t even started splitting, though they started hurting again today. I’ve heard that putting black nail polish on your nails can help protect them, but that seems either like an old wives tale or an excuse to rock black nail polish at work. Regardless, I now have 5 different black nail polishes, so I can start a new fashion trend: bald goth, anyone?

Anyway, food hasn’t been staying with me so well, but I’ve enjoyed eating it. Most of the time, I don’t feel sick. I’m tired every day, but I think that’s just the cumulative effect of chemo. Maybe my body was convinced it was done, and then I went back and did more of this. But on the whole I have been able to be a more normal mom, a more functional person. The weather has finally changed and it’s been beautiful, cool even. I made muffins with Lenny over the weekend. We went to a lake in the south suburbs and walked around with the kids. I ate at the dinner table. I did a little laundry. This might not seem exciting, but these were things I hadn’t done in a while. We even went to a minor league baseball game last week. But my relative normalcy doesn't seem to have fooled my kids, not at all.

That minor league game was the first time that I wore my hair outside of the house. I wore it to the lake too. It was cold-ish on both days and I didn’t want to be bald, and I also didn’t want to deal with the impact of being around a bunch of kids who didn’t know me and getting the questions. Wearing my own hair, with a scarf or a hat, was a truly strange experience both times. I looked so normal—just like myself. People treated me that way, guys looked at me, women commented on the red-headed family. I could reach up and play with my hair just like I used to do. Did anyone notice when I started crying? It happened several times. It just made me so sad. I used to be this person, and now I’m not. It’s not just about hair, it’s about the illusion of normalcy. I know that is so important to many women undergoing cancer treatment, but it’s the pretend-normal that is really rough for me. I’d rather just have it out there. I’d rather be the bald, obvious cancer lady, than be reminded of how I used to be and how people used to interact with my family.

It’s been a rough week emotionally. I have had no desire to write here at all. Maybe it’s chemo bringing me down, or hormones, or the rough times with the kids. When we were heading off to the lake, Lenny said “I wish I was at school and I didn’t have to spend time with the family.” Now, I did what any parent of a 4 year old would do in that situation. I told her that wasn’t nice and that I know she didn’t mean it, and that we would have fun. And then I left the room and cried. Maybe my daughter hates me, or maybe she loves me too much. Either way, I was thinking, what if this is the last time we get to do this? Why can’t we enjoy it? I can’t say that to her, of course, and it’s too much pressure to expect her to understand what’s going on in my head, but my god it’s hard.

Because this bone pain is scaring the shit out of me. Not because of taxol—that bone pain I can deal with, and it’s expected. What worries me is something different. Off and on for the last several months my spine has been hurting. I asked the surgeon about it back in June and she said it was highly unlikely that is was anything. She didn’t think I needed a bone scan, though I could have one if I wanted it. It seemed to get better so I stopped worrying; they say the pain from bone cancer never alleviates. I asked about it again when I felt it while I was on a/c, and the chemo nurse said that would be due to neulasta. Now Taxol is supposed to be to blame.

All I can think is, what if not? Breast cancer is most likely to metastasize to the bone, and the spine and hips are the most likely places. It’s unlikely to have “mets” when you’re stage one, perhaps unlikely for anything to grow during chemo. However, if that is what it was, that would be it for me. I would be stage 4, doing cancer treatment for the rest of my short life. They have “made great strides” treating bone cancer that has metastasized from the breast. They now give you up to 2 to 3 years to live.

Two to three years. That’s what I’ve been thinking about this week. Not getting to see Augie go to kindergarten. Not reaching 40. Writing letters to my kids so that they would remember me. Hoping Gabe marries someone else so everyone wouldn’t be stuck thinking about me all the time.

It sounds morbid because it is, I guess. And if I was just being a hypochondriac or having some kind of bizarre depressive episode, that would be different. It’s hard to be a hypochondriac when you’re my age and have cancer. Only 5% of women with breast cancer are under 40. I am one of them. Why couldn’t I be one of the 5-10% of women with no lymph node involvement who see their cancer spread elsewhere? I know I should just get the bone scan. I haven’t done it because the very thought terrifies me. It’s one thing to do what I’ve had to do with breast cancer. I just can’t imagine facing those test results and getting the answer I got from the breast biopsy. With this, there would be no going back to normal ever, and not much time to be abnormal.

The only thing keeping me going through chemo right now is the notion that things will start to feel more normal in a few months, that I have the possibility of a normal life when this is done. Is it selfish to say I don’t want to give that up too? I understand now where denial comes from, and I can see it now as a source of strength if you can really get into it. If I can stretch my denial from just not doing the scan to actually convincing myself that my bones are fine, that would be such a relief!

I thought about not writing this blog at all, because I know no one wants to read this—including me. I know I’m not supposed to have these thoughts, that I should be positive, and that it does put a real burden on people who care about me to hear me say these things. But maybe I just need to keep it real for myself, at least. That is probably selfish too, I realize. There's just so much pressure to feel things it's hard for me to feel; I need a place to acknowledge everything else, I guess.

I was talking to my ob/gyne last week about my menopause issue (my body still hasn’t made up its mind). This is the guy I have always felt has been supportive and understanding, even if he’s a little eccentric. When he told me the effects of menopause would be temporary for me, I said, well, hopefully (there’s at least a 20% chance it won’t be). He scoffed and said, great attitude! And proceeded to tell me to not let menopause happen. Just make sure it doesn’t, he said.

Huh? Have they been holding out on me? Can I push a “no menopause” button? If so, can I trade it for a “no cancer” button? Is that the “cure” everyone’s been talking about? I am totally behind that one. I would buy all the pink crap and wear all the ribbons and go on a thousand walks and even talk about strength and hope and love and whatever if I could have a do-over. I can’t though, that’s the thing. So the next step for me is to scan or not to scan. And to this day I’ve never had to answer such a tough question.

Wednesday, September 1, 2010

Day 118: Drugs and Rock n Roll

Today I started my new chemo, taxol--the supposedly easier one. I got through it, which means I've got five down and three to go. I wish I was done with it, but at least I've done more than I have left, right? I've been very nervous about it and I haven't really slept in the last three nights. It's hard when all of the variables are unknown. At least with A/C I knew how my body would react to some extent. A large number of people, something like 15%, are allergic to the solution they mix with taxol. I'm allergic to so many medications that I assumed I would be one of them and I was, and still am, concerned about all the different side effect possibilities.

We made a 9 am appointment for this chemo, as opposed to our usual 1 pm that allows us to go into our offices to work on chemo mornings. Taxol is a LONG infusion--about 4 hours total compared to 1.5 for A/C. We got there about 10 minutes early and were there until 2:30. They have to give it to you very slowly or your body can't tolerate it I guess, especially in the dose-dense fashion that I'm doing. Anyway, it was much less crowded in the morning and we had a nice room, so we could watch a movie (The Warriors! Remember that from the 70s? Thanks girl--you know who you are. And yes, I can dig it). We had to wait a while to get my blood test results back and I had a strange emotion when I received them. Last time, I had several numbers that were bolded on my sheet--meaning abnormal. But they were only slightly low--say, if the normal range was 12-16, I had 11.8. Nothing to be too concerned about so they went ahead and gave me the chemo anyway. But today, my numbers were all excellent--perfect, in fact.

I saw that and I had this strange sense of pride. I thought, see, I can have all these horrible side effects, and my body is still mostly healthy. I might look like an old man, and my body might be tricked into thinking it's an old woman, but so far I've gotten through some of the worst crap you can do to yourself on purpose, and I haven't had to change my life too drastically. Why am I proud of that? It's mostly luck, or maybe my age or general good health, that's got me through. But I think when so much control is taken away you feel like taking credit for something. And it helps with the despondency I've felt over going into menopause (I keep getting thrown for loops there--I've been spotting for the last few days. Am I getting my period? Probably not--just my body's way of being peri-menopausal, or of torturing me with the reminder--sigh).

Which is not to say that if I do end up with bad numbers at some point, that I should feel ashamed or wonder if I could have done something different. It's kind of like childbirth that way. Most people get through it fine, but that is actually an amazing thing--that a healthy mom and baby usually result from pregnancy and delivery, though of course not always. We often take the "normal" outcome for granted, and we really should marvel at it. Because there are some people who never get that normal outcome, and that haunts them. After all, I did 4 rounds of very drastic chemo, and I am not neutropenic or anemic. I don't have leukemia and my heart still seems to be working ok. I haven't needed a blood transfusion. My chemo has stayed on schedule up until this point. That's all good, right? I have decided to self diagnose again and assume that acupuncture is really helping me, along with my decision to eat my one meal of red meat--a cheeseburger--the day before chemo each time. Something must be working, and why not that? It's as good a solution as any the medical folks seem to have.

After prepping me with a hot pack for a long time to bring out my veins which are getting weaker, the nurse got my IV in with one try and started the new pre-chemo cocktail of decadron, benadryl, and pepcid, of all things. These drugs are meant to ward off the allergic reaction. Within a few minutes I felt so sleepy and out of it; the amount of benadryl they give you is enough to knock out several people at once. I stayed awake though, because a woman came in to give me a free mini-massage for my shoulders and feet. That was great.

Then it was time for taxol. Gabe was so nervous he couldn't stop talking and I had to whack him with a magazine. Again, this is the only moment where I feel like any courage is involved. Giving them your arm for that poison, watching them put it in. The nurse started it extremely slowly and watched me closely. Was I feeling hot? Did I have pain in my chest? Trouble breathing? A rash? etc. Nope--apparently I'm not allergic to the solution. So that went as well as we could have hoped. I will say that this taxol doesn't let you forget that it is poison. It really hurt my arm--I could feel this deep pain, stinging and burning, all the way along the vein for most of the time. They gave me another hot pack and more saline solution in my IV, which helped a little but also made me need to go to the bathroom a thousand times, but the pain still made it impossible to get comfortable and sleep even though I was wiped out from the benadryl.

So now I wait. If I get the extreme bone pain that many people get, it will probably happen over the weekend. I'm scared of that. Some people have mild versions, but you hear these horror stories about young women who end up in wheelchairs from the debilitating nature of the pain and the neuropathy. Neuropathy is likely to be more cumulative, so I'll be waiting a while. And we'll see how long these eyebrows, eyelashes, and nails hang on. Fun stuff.

In the meantime, for right now, what they told me has proven to be true. It's not nearly as bad as a/c, not yet anyway. A/C made me feel awful right away and that awful feeling lasted to some extent for a whole week each time. With this, I have taken no anti-nausea medications at all and I was able to eat a normal dinner. I feel tired and dizzy, and I took a nap when we got home, but I don't feel like a complete non-human. And Gabe doesn't have to give me the neulasta tomorrow. Taxol can do a number on your bone marrow too, but not as much as a/c. Hopefully I will avoid the extreme side effects and my numbers will stay positive and I'll be done with this shit in October and able to start radiation in November. Then I can have my first follow-up mammogram in February and be scared to death of that, but in the meantime I could enjoy Christmas. I'm almost scared to write that, after my past experiences when I let myself think positively and then got punched in the gut. I just feel like I've been through enough, can't this one go a little easier?

Unrelated to taxol, I went with a coworker to the American cancer society the other day. I haven't had time to search out the resources of ACS, Gilda's club or anything else. It boggles my mind how anyone with cancer finds time to go to a support group or seek out services. Between my kids and my job and the numerous treatments and doctor's appointments, the only thing I feel like I have time for is acupuncture. When exactly am I going to go visit ACS? So I'm glad my coworker, who went through a very similar thing with triple negative cancer, lumpectomy, AC and taxol, and radiation, three years ago--suggested it and set it up for me. I got all this loot there--some pillowcases made by cancer survivors that I picked up for my kids, pink scarves knitted by breast cancer survivors for me and for Lenny, some coloring books for Lenny, and this awesome wig.

None of the wigs in the free wig bank looked remotely good on me. I am just SO not a blonde. The dark wigs didn't work either. I told the woman at ACS that I didn't really want a wig, that I had them and I didn't wear them anyway. She asked if I would be willing to try on some funky wigs that no one else wanted, so they didn't even put them out. That was fun; we were all three laughing at my little fashion show. The woman at ACS seemed genuinely pleased that I was willing to have a little fun with this--they must not see many smiles in there. Anyway, these wigs were pretty atrocious, at least on me. With some of them I wondered who thought it would be a good idea to make such a wig, but who am I too judge? I'm the one who decided it was a good idea to walk around with a shiny white head, after all. But the one you see above was the clear winner. Would I wear this to work or the grocery store? Well no, but I wouldn't wear my natural-looking wigs either. So for fun, maybe if I'm up for going out anywhere interesting, or for Halloween, this is it.

It's so good that the whole family had to try it on. Augie is the clear winner with this look. You should have seen the waves cascading down his back as he ran around with his pacifier in his mouth. I thought I would cry from laughing. He actually kept it on and seemed to like it. I wonder about this child. He is a crazy, aggressive little brute. But he seems obsessed with shoes, loves to wear my hats, and apparently can look like a pint-sized rock star with a woman's wig. I'm glad it's not so cut and dried with these kids, because sometimes I wonder how Lenny is such a girl and Augie is such a boy when they live with parents who often take on the opposite gender role. As a parent, you realize that you can only take credit for so much and kids just are who they are, so you need to enjoy it even when they make you nuts. Who is this eating, squealing, mischief-making, hitting machine who has no fear and likes to shake his little booty in a black and maroon wig? That's my son, and you wouldn't put that baby in a corner now, would you?