Day 165: The Last Chemo

There was a time, including last night, when I really thought this day would never come. I have had terrible insomnia due to my hot flashes, but I was so tired last night that I did fall asleep for about 4 hours, and I had these crazy chemo dreams. I showed up six hours late and missed my chance to have chemo. My numbers were horrible and they told me I needed to wait a month. Gabe forgot to drive me and I couldn't get to the hospital. It was like the dreams where you show up naked to give a speech or where you forget to go to your final exam, except much more morbid and with more serious consequences.

Gabe and I went out to Union Pier, MI, on Saturday for our 6 year anniversary and my mom watched the kids overnight. It was a great trip, albeit short, and it did manage to distract me somewhat from chemo thoughts. Not entirely though--it's not as if the hot flashes decided to take a vacation, and of course the owner of the Inn had a story about his wife with metastatic breast cancer (she survived) so it all really does kind of follow you. But I think if I had stayed home all weekend I would have been obsessed with today, and that would not have been a fun way to spend a beautiful few days of my favorite month.

Today I was so nervous on the way to Northwestern that I couldn't talk in the car. I had to see the doctor after my bloodwork was drawn since it was the last chemo and I worried that I would wait forever and not get a room to myself. This actually almost happened. I saw him about a half an hour after my scheduled appointment, a record of timeliness, and I thought about telling him how I felt and just said screw it, asked my questions, got some flip answers and walked out the door. The nurse who always takes me back to the chemo suite pulled us aside as soon as we got to the waiting area and said, I'm so glad you're here! I wanted you to get the room before the next lady but I didn't see you out here.

So we just barely got our room with the lake view (though they built the rooms wrong--you can't see the lake when you're lying in the hospital bed, though your guests can see it). I wore my party shoes--the turquoise and red cowboy boots I bought years ago in Austin, TX. And lo and behold my numbers were excellent--better than the last time. My veins seemed tired and took lots of coaxing but once the nurse (here's a picture of us when I was all done) put the IV in she did it effortlessly and it hardly even hurt. So victory number one: eight rounds of chemo plus one hospital stay that required a 36-hour IV and included one blown vein in my hand--and I never needed a port. At the ER last month, they were shocked that I had no port. But that makes it easier, they said. Yeah, for you. I don't want that crap in my body. Someone gets paid to figure out how to do blood draws and IVs, and I shouldn't need two extra surgeries to spare them the trouble.

I did have allergic reaction #3 this time during the infusion but it was milder. I felt myself getting hot, though in a different way than the hot flashes. Gabe noticed my red face, and so did the nurse, but she just watched me. I said I'd rather avoid more steroids if it didn't seem too bad. She never stopped the taxol and I didn't get more steroids. Victory #2, I guess. We'll see what happens with the flushing, shortness of breath and rash over the next few days--at least now I know to take the zyrtec.

I have been saddened to have some major tingling in the fingers of my right hand this evening. I really thought I would avoid neuropathy since I haven't had any up until this point. I'm hoping it's transient, since it's in the hand where the IV was placed. I'm also hoping my new peach fuzz doesn't fall out. If you click on the close-up picture of me at chemo, you can see my new virgin hair (plus an acupuncture needle in my neck). In a few pictures Gabe and I took over the weekend in Michigan, the hair even looks red, though to me it looks colorless up close--just like Augie's hair as a newborn.

It's an immense understatement to say that I'm ready to put chemo behind me. I can't really believe I don't have to do it again. I had BETTER not have to do it again--having a recurrence or God forbid a "mets" is just too horrifying to imagine. I don't have another mammogram until the end of February, so I have at least that long to know that I'm chemo-free. I see the oncologist and surgeon again on January 4th, for more breast exams and to talk about how I'm healing and any lingering side effects (you're fine! you look great!). I'm relatively impressed with my breast's healing, actually. I have that half-moon scar and the indentation, but considering the size of my breasts and the fact that I had two surgeries, it looks pretty damn good. Now, radiation will make it look like hell for a while, but after that it will be perkier than the other one. The skin will never be the same, but it could have been much worse.

Ah, radiation. I am getting mapped tomorrow. I'm not looking forward to it. I will get another one of those painful radioactive injections that's not supposed to hurt for long--unless you're thin--and I will get a cast made of my breast. I don't need underarm radiation since my lymph nodes weren't involved. But I will get a few tattoos--probably several since I had several tumors. I find this fairly ironic. I am 35 years old. I don't have any tattoos; I don't even have pierced ears. Stupid cancer makes me get tattoos and they won't even be interesting--just black dots on my chest. If I was a normal, more Irish redhead I would have freckles and moles all over my chest and it wouldn't look as obvious, but I'm not and I don't. But more on that tomorrow--I will write about the mapping experience since I feel like it's my duty to explain things to others, since so little has been explained to me. I just wanted to write this last chemo blog tonight.

If I write it, it might be true, right? Can I get a witness? No more chemo! Say it with me! I'm done, so it's all over but the shouting as they say, or but the waiting, to see how this has changed me in the end. Is the menopause permanent? What will my hair look like? Will Gabe change his mind, which right now is set on me staying bald or with extremely short hair because he loves it (this from a guy with a redhead fetish? weird)? Will my heart be ok? Will I have neuropathy? Will my cancer come back or metastisize--will this have done any damn good?

That's the stuff that will never really leave my mind about this experience. I know it could have been worse. There are many things that didn't happen: no port, chemo brain, blood transfusion, extreme weight fluctuation, fatigue that made it impossible for me to function on at least a low level, no major illness or temperature landing me in the hospital (I'm knocking on wood since my WBCs are set to tank in a week due to the lack of neulasta). But so many things did happen, and I can't really say anything positive about chemo. It was really, really, shitty.

Now, I am so grateful for the help we have been receiving in the form of people cooking for us, doing yard work for us, and being our back-ups when crazy things happened and we needed help with the kids. I'm humbled by the people who are reading this blog, some of whom don't even know me that well. But what all that means is that I know cool people, not that breast cancer or chemo is positive. That's where I guess I'm different than the October-awareness bandwagon. You recognize positive things when something bad happens and people pull together, but the thing is, those people were already there. I still wish the bad things hadn't happened--the big one (cancer) and it's attending poison. I would rather see people at a party than have people help take care of me because I can't take care of myself. And of course, some people have pulled away from us, and I understand that too. It's some heavy shit--cancer's not good.

But as the chemo nurse said today, you did it--you made it. I know radiation won't be fun, but I figure it can't be as bad as chemo. It's every day and that in and of itself is a pain in the ass, but it should be easier. I need to see how the next few weeks go and I need to not get sick, but I did it, didn't I? I'm here, in one piece, though a strange piece it is. Fuzzy-headed and with half my eyebrows and lashes, scarred and dented, alternately burning hot and freezing, sometimes bloated, with fewer appetites of all kinds than before, muscle-atrophied and tired. But I can think and remember and write and walk and eat and enjoy my family and friends, and I didn't hide in the house like I thought I would. That bald lady, or that lady with the green wig or the do-rag in the hot sun, she was out there. Maybe less than before, maybe slower or by herself more often, but there. I'm very aware that there are a lot of people in my situation who can't say that. I might be one of them someday. But not yet--not yet, not yet.

Day 152: Taxol #3

Chemo #7 went as scheduled yesterday, though nothing just happens easily with this, it seems. My #s were fine, thanks to the neulasta I guess. This will be the last time I take that--next time we will just let my blood counts tank and hopefully I will not get an infection or fever. Again, I don't know how the lack of neulasta will affect my radiation schedule--we just need to wait and see.

Taxol #3 came with allergic reaction #2. Gabe was with me this time, and he saw me turning red as I got hot; I also got immediately stuffed up. The taxol was turned off and I was given a small amount of steroid; waited the requisite half an hour and started it up again. I seemed to do ok for the rest of the infusion. Yesterday I felt pretty good, and was up all night again due to the steroid.

Incidentally, my hot flashes seemed to be better last night. I had several that woke me up, but they weren't every half an hour. I'm hoping the acupuncture I did on Friday, combined with the free acupuncture I got during chemo (we have never brought a camera to chemo but that would have been a great shot--needles all over me, ivs, tomato face) are going to help with that. I may turn into a new-ager after all.

Today, I felt pretty good in the early part of the morning. But then I started feeling short of breath again, heart pounding, stuffed up, and my face was really flushed. In fact, the left side was much more flushed, and I had a temperature 2 degrees higher on that ear than the other. I emailed the chemo nurse and she agreed I should take some benadryl. I think they finally believe me that I'm having allergic reactions. They even seem concerned about my shortness of breath, though yesterday there was this long discussion about whether I was just having an anxiety attack before when I went to the hospital. Sure, I was pretty anxious about eating those pancakes. It wouldn't have anything to do with the poison in my body. Sigh.

The benadryl helped with the flushing and the stuffiness, but this shortness of breath is scary. I thought it could be neulasta--respiratory distress and fast heart rate are rare complications. But I'm told it's probably the taxol and I should take some zyrtec or claritin. My house has become a depository for over the counter drugs. It is really ridiculous, especially since most of them haven't done a damn thing for me.

I'll try the zyrtec once the rest of the family is in bed since I don't want to be knocked out yet. We're having quite a time here--Lenny's had stomach flu again and Gabe seems to be catching it. Lenny got sick at a birthday party on Saturday and aside from taking a 3 hour nap on Sunday, was fine until last night. She woke up throwing up, and doesn't remember it happening at all, even though it was pretty violent. Somehow Gabe went to work and my mom helped with Lenny today--I needed to avoid her, and I was also pooped and feeling weird. She seems ok, but this is another reason we need chemo to be over--flu season with two little kids in daycare is no time to be so immunity-compromised. To the ladies who plan to visit me tomorrow, I think it's fine--Lenny seems to feel ok now. If people are still sick, I will obviously not want to subject anyone else to that madness!

Earlier today I posted an article on facebook from the Chicago Tribune about breast cancer awareness month. It's a little harrowing--I won't go through the whole thing, but one of the things about breast cancer awareness that is so troubling is that it doesn't seem to have led to huge gains for people who actually have breast cancer, at least not proportionate to the advertising. And I really am sick of seeing the fried chicken buckets and wine bottles with pink ribbons, when being overweight and consuming alcohol are two top risk factors for breast cancer. Why can't corporations just make a contribution to a cause, regardless of how many of their products consumers buy? I mean, a quarter donated for every bra bought? A dime for every pink garden implement?

It's just hard to have breast cancer in October, when everyone is talking about being proactive and hope and strength and everything, and I'm terrified that my kids will only remember my face from a photograph, and it will be a bald photograph at that. I really liked that part of the article--saying that talking about being proactive is problematic, as that implies that women are somehow in control of whether they have breast cancer or whether they survive it, when in fact, there is very little knowledge about what actually causes breast cancer or who it is going to kill. And the treatment really is a shot in the dark. Stage one, stage 4--same chemo. 35 or 75 years old--same killing of the ovaries, leading to potential ovarian cancer later. Same hair loss!

I was on a website earlier today looking up potential side effects of neulasta and found a string of messages that included advice from one woman who said that her doctor told her to look at chemo as something she "gets to do," as a privilege, and that she thought that helped her through it. I'm glad that works for some people, but I'm just not one of them. It's kind of a terrifying process, especially since the long-term effects are unknown. But I also can't believe I only have one left. In a month, or 5 weeks at least, I will hopefully be through the short term side effects and over that last hump where my WBCs will be low for a while. There will be no rest--straight on to radiation, but can it be true? One more chemo? It seems too good to be true. In the meantime, I will channel whatever positive energy I do have, and everyone else's, to avoid another beautiful weekend in the hospital. It's not going to happen. Apple picking, here we come!!

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.

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.

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?

Day 69 Redux

Thanks to everyone who is trying to help me through this awful morbid insomnia. I appreciate all of the concern, and I wish that each of you could give me one hour of your sleep--that would be awesome! I was really losing it today. I still feel like a subhuman, but I thought it would be good to update and get out some of my frustration with the medical community. It comes down to this.

No one knows what the hell to do with me.

It's like they think I'm kidding, or lying, about how chemically sensitive I am. When I was dreading chemo in this blog and people would tell me, it might not be that bad, I wasn't trying to be negative. The idea that I will have bizarre side effects is simply the truth for me. This is a big reason why I don't drink, why I've never done drugs, not even smoked pot. I discovered in college that I couldn't take Nyquil because it kept me awake--I had to take Dayquil. Valerian makes me jumpy, I can't sleep after drinking wine. I hallucinate on pain pills, my blood pressure rises from tylenol. They used to tell me I was a trooper as a kid because of the pain I could endure unmedicated. I think even then, I was more afraid of the effects of the drugs than their purported benefit. I still remember crawling into my parents' room when I was 8, unable to walk because of my abdominal pain. Appendicitis, you ask? Nope. Toxic reaction to Depakaine. ER doctor called it, but my neurologist kept me in the hospital a week doing guinea pig tests on me because he didn't believe it. The more meds he gave, the worse my pain was and the more seizures I would have. The meds stopped, I got better. I was "cured." Uh-huh.

It's like I live in opposite land for medicine. Maybe the good metabolism that helps me stay thin also is very efficient at metabolizing medication. Who knows.

No one was calling me back for the longest time today. I called everyone--oncologist, my ob, gp, random nurses, you name it. When I thought I was going to keel over I took a lorazepam--one of the anti-anxiety drugs I was prescribed that I've taken only a few times, and not since last Saturday. This is the drug that knocked me out so much after my first surgery that I fell asleep sitting up eating a cracker. Post-chemo, all it does is make my heart race. I started researching side effects online and realized I NEVER should have taken that drug. People can go through withdrawal after just one dose. Of course this is rare. Of course, that means that probably happened to me, and it might be one reason for my racing heart.

Ambien just made that heart race more. I have tried every kind of relaxation technique, exercise, different foods, bedandryl, herbal tea, you name it. Again, this is not sleeping erratically or getting only a few hours. I would take that. This is NOTHING. I can't tell the difference between day and night. I forgot to shower for two days because I thought it was the same day. And yet somehow I have been working, albeit from home. Anyway, the oncologist's nurse was going to prescribe some other sleeping medicine, and I got totally turned off after looking at the side effect possibilities. Then someone else called me with the following advice: Take no medication at all. Try to meditate. Try acupuncture. Relax.

Oh, ok, I'll go do that! I forgot that I could just relax! Thanks.

So tomorrow I will try acupuncture, but not to help me sleep. It's free, it's something that can appease the docs, and maybe it will help with some other side effects that are physical rather than neurological. I'd be willing to walk on hot coals for sleep, though that's as likely to work as medication or meditation.

These people just don't get it. I have insomnia for one of two reasons: chemo, or the drugs they gave me to counteract the effects of chemo. Perhaps both. These people were trying to talk to me about anxiety, about how we don't realize how stress affects our bodies. Please. I have had breast cancer for two and a half months. I haven't been in denial for one minute. Death? I faced it, I still face it, and everything that goes with it. Loss of fertility, youth, my hair, you all have seen that here. I have dealt with it.

I know what it's like to have anxiety-related insomnia, where you don't sleep well or wake up terrified or can't get back to sleep. That sums up the month of May for me. But I have gone through a lot of bullshit that didn't even bring me down the way it should have--the second surgery, the fact that I had a massive annoying reaction to that surgery, taking steroids for that (21 pills in six days, nightmares, jumpy--STILL COULD SLEEP. compare to 4 total steroid pills post-chemo. I don't think it's the steroids, at least not alone). And none of that kept me awake for a week. That happened the moment I started chemo. Even Gabe admits that while I was miserable in some ways, I was emotionally calm the few days after chemo. It wasn't until the last few days of sleeplessness that I lost all sense of reason.

So I am pretty furious at this idea that I need to talk to a social worker. To do what, talk about breast cancer and how it sucks? At this point, I am having fond memories of breast cancer. Oh, when I only had cancer, and I was still fully functional. Yes it could have killed me, but not as quickly as this chemo might if I end up in the hospital with no immunity (let's hope for no blood transfusion--of course I have the rarest blood type). Breast cancer is not the issue right now. Maybe it will be in six months, but I need to get there first. Chemo is the issue--not my "feelings" about it, but my admittedly "morbid" physical reactions to it.

I don't need to do yoga or talk about my emotions. That might help down the road, or in general with cancer, but right now what I need is to sleep. Any talking I would do would resolve around sleep, not cancer. Once I sleep, then maybe I will see the sun shine again. I am well aware that the lack of sleep is destroying my mood, my sanity, and my perspective. But that is what is happening--it's not the other way around.

There is a reason that sleep deprivation is used as a torture technique. It's one of the reasons Winston gave up Julia. It turns you into a primal being, and it messes with everything in your body. I have started starving at 2 in the morning because my body thinks it's mealtime. When I close my eyes I can feel them moving, like scared skittish animals under my eyelids. I am so tired I don't think when I'm resting. They keep telling me to turn my mind off. No problem! It hasn't been on in days!

After taking the lorazipam today I rested for a while. No sleep, heart seemed to be worse. And then I got up to go to the bathroom. And I fell over. That's when I started researching the side effects. Give it a try--I feel like these drug companies are insane to make some of these things.

My seizure history puts the docs at a loss too. They were telling me they've never seen someone have a chemo-induced seizure. First of all, I'm not worried about that. I'm worried about a sleep-deprivation seizure. If you had a clue about neurology you would know that is a big possibility. Second, there are a lot of things that have happened to me that they have never seen. Never seen someone not sleep at all for days. Never seen someone have toes tingling the day after AC. 95% of people on this chemo will be constipated, they told me. Guess who is having diarrhea? Sorry if that's TMI, but I'm just saying. You will lose your ovarian function, they told me. Today, I got my period.


Gabe and I called the babysitter again today so I could get some middle eastern food and we could talk. I never realized how hard it is to find something on a middle eastern menu that isn't grilled. Anyway, at dinner he asked, I wonder what they say to men who have breast cancer? I think that's a great point. What do you think they said to Richard Roundtree? Hey Shaft, you have issues with your breast cancer? Well, get over it. Go meditate, do some yoga. Take these 5 drugs that we have never tested fully on men with breast cancer. Impotence? Who cares? You're Shaft, right? Maybe they told him to darken the room, put on some mood music and think happy thoughts (I was literally told that today). Do you think?

I'm doubting it. Imagine telling a room full of men diagnosed with prostrate cancer to talk it out, do some pilates. It's like it's still the 19th century and women are just crazy hysterics. But not this lady. If chemo is poison that kills cancer cells, mouth cells, hormonal cells, hair cells, white blood cells, fingernail cells, intestinal cells, and more, why the hell couldn't it cause your brain to forget how to sleep?

Maybe next time they tell me they don't know what to do with me, they have never seen this before, and I should call a social worker, I will tell them to talk to me like I am Richard Roundtree. I bet you've never seen that shit before either. But you're not going to talk to him like he's lost his mind, right? Or you had better watch out.

Day 66: Insomnia Blog

I'm writing this blog at 4 in the morning because I have been up since 11. It's actually more accurate to say that I've been up since about Wednesday. Chemo sucks, but I have to say that the worst effect for me so far is this extreme insomnia. I have decided to forgo the steroid I'm supposed to take for the next two days to see if that helps, but I doubt if that's it. I was on a much more extreme steroid for the rash I had, and while it caused some insomnia I still slept, even with crazy dreams.

This is just ridiculous.

I mean, this is chemo. On the one hand, I'm exhausted. I was waiting for that extreme fatigue to hit and I was afraid of it. Now I would almost welcome it, which I know is stupid, because chemo fatigue is not actually relieved by sleep or rest. Every day I hit the wall sometime in the late afternoon and my body just needs to lie down. This is a bad time to feel that way when you have little kids who are coming home from daycare and getting ready for bed. I did manage to feed Augie his bottle on Thursday night and read Lenny stories before bed. Otherwise, I can't say I've done much with the kids.

I started to feel bad the night of chemo. Everyone told me the first day would be fine and I wouldn't feel a thing, and that days 3-4 would be the worst. I felt ok going home on the train, but then I was extremely nauseous, my toes were tingling, my head was killing me. They give you 5 anti-nausea drugs pre-chemo with this AC, so the nausea was a surprise. I came home with a slew of medications, and I tried to take the anti-anxiety/anti-nausea medication in order to sleep. It is supposed to totally knock you on your ass. Well, it didn't work. It made my eyes heavy and I felt groggy, but I didn't actually sleep.

Thursday I still felt very woozy, and I ate like I had the flu. I think my mistake on Wednesday was eating a normal dinner, even though that's what they told me to do. So Thursday it was a little bit of scrambled eggs, some toast, some cantaloupe with cottage cheese for protein. Yesterday I could eat a little more, but not much. At least I still have my sense of taste for now. In fact, my sense of smell is on fire. I can't stand the smell of a lot of foods, especially hot foods. It's a good thing I'm not supposed to change poopy diapers anyway, because I know I would hurl just to be around them. I actually stopped my skinny daughter from eating sausage for breakfast yesterday because I couldn't stand even the thought of the smell.

I never had that with pregnancy, with one exception. When I was pregnant with Lenny I couldn't stand the smell of ripe bananas. As in, I would need for them to immediately be removed from my presence. And I love bananas, and making banana bread with ripe bananas. Weird. I also have never had heartburn, not even when pregnant. Now everything I put in my mouth, including all the water I am supposed to drink, feels like it's going to come right back up with this horrible reflux.

And I just feel foggy. Forget chemobrain, it's too early for that. People need to sleep to function. I can get by on very little sleep, but we're talking days here. I am really concerned that I won't be able to work. I am thinking about asking for sleeping pills. I've never wanted to take those--they scare me. Even though I don't have an addictive personality, I'm afraid I would get addicted to ambien or have some of those weird side effects like sleep-driving or something. I'm not worried about the kids. Augie is sleeping through the night now, and Gabe can handle them if I'm knocked out. I just hate the idea of more drugs in my body.

If not for this extreme insomnia I would say that so far chemo is doable. I don't feel good, and I felt miserable for a few days. I feel sick all the time, but it's not as bad as it could be. Gabe gave me the Neulasta shot on Thursday for my white blood cell count--it seemed easier for him to give me the shot in my butt than to give it to myself in the stomach--and I've had arthritis in my hips ever since. I am not supposed to feel any bone pain from that drug for 5-7 days after it was given, but with my existing arthritis I'm not surprised. So I'm achy, and woozy, and my head hurts and this heartburn really sucks, and after eating anything at all I want to lie down, but that makes me feel worse. But most of all, I am about to lose my mind if I can't get some sleep.

The chemo experience itself was ok, once I got in. We were waiting a long time for a room to open up for some reason. I finally met the nurse I've talked to on the phone and emailed with a lot, and she was great. She explained everything to me, showed me how to do the shot, went over potential side effects. In fact when I called her on Thursday she kind of laughed at me and said that after I was done with cancer, I should never take medication again. I appreciated that-she actually believed me about my symptoms, which were rare right away. A lot of times I think doctors don't believe me, or think I'm a hypochondriac, when I explain how chemically sensitive I am and why I dread taking medication. But this is the woman who is allergic to most antibiotics, who throws up after general anesthesia, who spent a week in the hospital due to a toxic reaction to anti-convulsants, who can't take any decent painkillers and even gets a racing heart from Tylenol. So I was glad she agreed with me, and she gave me permission to halve my steroid. Unless I feel really nauseous today, I'm not even asking permission to not take it.

Anyway, back to chemo. Once we were ready to go she did a great job placing the IV in my hand. She told me there was no reason I shouldn't be able to get through chemo without a port. Thank God. I just didn't want another operation, another alien object in me, and I will admit, another scar on my chest. The left side is scarred enough, who needs that on the right? So I got the pre-chemo meds in the IV, in addition to my Emend pill ($600 for six pills of this anti-nausea drug. You would die laughing if you saw these medical bills. First surgery? $30k. Twice what it cost to have a baby and stay in the hospital for two days.) Then she "pushed" the Koolaid red adriamycin (sp?) into me--two huge vials of it, but that only took about five minutes. Then the cytoxan dripped into me for 45 minutes. This chemo is much shorter, and we would have been out of there much sooner if it hadn't been for all the pre-chemo talking and explaining that needed to happen. The taxol, on the other hand, will be 3.5 hours. Ugh. The thing is, the IV in the hand does hurt. So for 90 minutes it's fine, but 3.5 hours! Still, much better than the port.

I've tried to be as normal as possible, but it's hard. I've taken walks every day, not as long as I normally would, and not by myself, but I've done it. Yesterday I tried not to sit or lay down for most of the day, to see if moving around, just putzing around the house, would help with sleep. I definitely felt exhausted after my afternoon walk, but not enough to actually fall asleep. I think I slept for about 90 minutes last night.

And now I'm feeling woozy again. I'm sipping some water and eating some crackers, but it's not helping. Today is our all-day block party, which is usually a lot of fun. We've hired a teenage babysitter, since Augie is just walking, will need to nap, etc., and Lenny will want to be outside all day. I know I am going to be mostly useless, so this way the girl can watch one of the kids and Gabe can be with the other one. I'll make a few appearances, but it will sure be different than last year when I sat around nursing my 5 week old in public the whole day. By that time I had already lost 25 or more pounds of baby weight and I felt great and had this cute little guy attached to my boob all day. This year, he's walking, and I should be able to be out there watching him stick out his big belly for balance while he tears through the street. And he does, he tears. He didn't even pull up until he was 11 months old and now he just wants to run, so he falls a lot. But I know I will be inside a lot of the day, trying to figure out how to be comfortable. And if I don't feel better by Monday, or at least more human, work will be a challenge.

I want to work. I would like the distraction, to some extent. On the other hand I'm pretty damn distracted with a 1 year old and a 4 year old. So we'll see. It's just that October 13 seems so very far away. That's my last chemo session. I know the effects of chemo won't end then, but right now I'm just thinking about 3 entire months without sleep, and I'm remembering that Insomnia movie set in Alaska, and I can see how you would go crazy. I also know that I am in the easy part now, because the longer-term effects of chemo haven't had a chance to happen yet. After three days, you aren't going to have menopause or chemobrain. Feeling like this with hot flashes too? Ugh.

And there's another chemo side effect that hasn't happened yet. I still have my hair. Only until Thursday, when I get it shaved off a full week before it's supposed to fall out. So then I will look repulsive in addition to everything else. I really think I will be down that day, and maybe I will post a bald picture of myself, so you all will need to tell me I don't look so bad, even if it's not true. Right now, outside of my "chemo glow" (red face), I look pretty normal. I can see how women gain weight on chemo though. This nausea actually makes you want to munch all the time. I told the nurse I really didn't want to gain weight, not only because I worked hard to lose it, but because I'm paranoid about not finding cancer if I do. She understood and said they would keep an eye on me. I'm pretty sure if I had said that to the oncologist he would have told me that was the least of my problems. So I like this nurse, but she can't make chemo easier. This is the really lonely part, where you just have to go through this yourself. What else to do?

Clearly this blog isn't very insightful, and I can see now how people say that once you are in treatment, things change drastically. Some things are better. Between May 4 and June 25 I really was living with emotional torture that is hard to describe to someone who hasn't been there. Finding out about cancer, wondering if I would die, not knowing my stage or prognosis, waiting for the BRCA, waking up in surgery, thinking I was done with surgery, needing to do it again, not knowing if I would need to do a mastectomy until two days after my second surgery, putting off chemo. There was so much to think about and anticipate.

Now my mindframe is different. It's not about what the future holds, how will Katy be in the end. Maybe I'll feel like that again. Right now though, it's, can I make it down the stairs to write this blog? Should I eat breakfast or just a cracker? Will my heart ever stop racing enough for me to sleep? Can my kids possibly talk quieter because if not my head is going to explode? And what will I do in the 7-12 days post-chemo when my white blood cells are down and I'm at high risk of infection?

And then, why am I doing this to myself again? Wednesday at 2 pm I was totally healthy. No cancer in my body that anyone knows about, walked from the Fed to Northwestern on a very hot and humid day with no problem, speeding past everyone, making all the lights. That was the hardest part of the first round for me. I was so nervous, so anxious. Waiting for the room was making me crazy. The room itself was nice, I suppose. It was private, I had my own bed and tv, and I did listen to one of the mixes I've received--4 people sent them to me so thanks! But I just dreaded when that IV went in and I voluntarily gave up my health. I know I don't want to be in that 15%. But to poison yourself in this way for a stage one cancer that never made you feel sick is really difficult. Other cancers, I can see it more, because you get sick. Brain cancer gives you terrible headaches, maybe seizures. Bone cancer gives you pain, lung cancer makes it hard to breathe, liver or pancreatic cancer make you very sick (well, they usually kills you as well) as do colon cancers. I can see chemo in those cases--hey, this is making me better. If you are stage 3 or 4, hell if you are stage 2 with cancer in the nodes, it makes sense. But I'm stage one, had no pain or sickness from breast cancer, no health issues at all. I had a baby happily chomping away at my cancerous breast for his entire life. And now, soon enough, I'll be that bald cancer girl for a while, and it seems like that's coming out of nowhere. I do still want to be out in the world and see people, but right now it's hard to even think clearly, so I'm proud of myself for writing this blog, especially because a new chemo effect of blurry vision seems to have just come on the scene. As someone once said, to sleep, perchance to dream! Oh how I wish.