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 92: Random ramblings

So I am officially 3/4 of the way through with a/c. On the one hand, that means I'm almost done with it, but on the other, I have to do it one more time. Ugh. I couldn't sleep well for the last few nights before this treatment. It is so awful to think about putting yourself through that; I try and try to keep it out of my mind, this thing that I'm doing to myself. But then new realizations kick in. Chicago's been so hot this summer, and while I know it's normal to feel dehydrated on chemo, I've been wondering why I get headaches etc. in the heat. I'm not having hot flashes yet, so that's not it. No--I have lost the ability to sweat. Like a newborn baby--no sweat, no tears, no hair. What the hell kind of shit is that?

Chemo yesterday started out a little annoying. I have been lucky to have my own private room with a tv for the last two treatments. This time, there was no room at the inn, and they put me in the communal infusion area with several other women. Gabe and I were joined by a friend from New York, so my nurse found a room for us so we wouldn't be too cramped. And then I got some relatively good news. My numbers--white blood cells, hemoglobin, etc. were all fine and even better than last time. I think that's one of the things that made me most nervous before chemo--if my numbers don't stay up, they will put off my treatment, and my magic day of October 13 will be put off as well. I really, really intend to be done with cancer treatment by Christmas. It's also scary to think that you could feel fine, and go in and find out that there's something going on in your body that's just not right--these numbers are indicative of very important things. It's akin to the original cancer diagnosis--you're walking around feeling fine, and then someone tells you, sorry, not really.

But this time all systems were go. It took the nurse a little coaxing of my veins to get the iv in, but then she did it fairly effortlessly. Three down, still no port! Taxol will be harder-it's a much longer infusion. The nurse was scaring me by saying that taxol is more likely to make me lose my eyebrows and eyelashes. I'm lucky (always lucky!) I guess to still have those--I even have some arm and leg hair, and some little bits of hair in other parts of my body. I'm not looking forward to losing it all--I'm not a baby, I'm a woman, damnit!

I've gotten used to the shiny bald head, in a way, and I think one reason it works is that I still have eyebrows. However, I do get rude comments--today I went for a walk and a teenage boy on a bike laughed and pointed at me, shouting "hell no!" Lots of people stare, but I have realized something that surprises me. I don't really care. Chicago is a big city. There are lots of people and things to look at that are more disturbing or interesting than me. If people do look, it is unlikely that I will ever see them again anyway. And oddly, it's not that much different than having people look at me for my red hair. It's also led to other off-hand compliments, like that I have flawless skin (it helps to have no oil in your body), or that I have nice ears. I remember years ago I went on a blind date and I guy told me I had nice ears. That seemed so weird. Now, it's like a daily remark.

Does my relatively easy transition into being a bald woman make me grateful? Hell no. I really wish I still had my hair. But you have to find the tolerable in the intolerable I guess. Like today--I had a little bit of appetite, and I even ate some chicken and a biscuit for dinner and it's still in me. The weekend will be the true test--once the miracle Emend pill is over tomorrow, the nausea might really kick in, along with the weakness and fatigue. But if it's not as bad as last time, and if I don't have that horrible stomach pain or get down to 110 again, I think I'm going to give acupuncture the credit. That, and the cheeseburger and shepherds pie I ate in the few days before chemo, which might have given me enough iron to sustain me. Either way I'm going to do weekly acupuncture to get me through this a/c. It's worth a shot.

On another subject, I have been thinking a lot lately about how or why I am handling this cancer situation in my own way. It brings me to something that happened in the radiation oncologist's office. This doctor looked about 20 years old and was very serious. But since I'm at a big research hospital, he was still trailed by two groupies/residents. One was a woman who asked me lots of questions. The guy just seemed bored, or nervous, or something. It was a little uncomfortable. I had to have a breast exam from my doc and the female resident. Just take off your gown, lift your arms up, lie down, do this, etc. This seems like the 87th breast exam I've had since May 4. I might as well show my boobs to the whole world at this point. As I was getting the second exam, Gabe asked me if I felt like a lab rat. Without hesitating I said, sure, but I've always felt that way.

That explains a lot of it I guess. I have memories of that CT scan at 6 years old, doctors not listening to me, disregarding my feelings. I started to learn this lesson then, about being my own advocate. I've written here about my experiences with epilepsy and being in a wheelchair as a child. One thing that I don't think I've ever written about or even told many people about was something that happened when I had the toxic reaction to my epilepsy medication when I was 8.

My neurologist refused to believe that's what was happening, so he put me through a bunch of guinea pig tests for a week. At one point I was in a big room, separated from other patients by only a curtain. Two women, probably in their fifties, were having the same procedure as me. What was it? A barium enema. You can imagine what that was like--I'm sure, thinking of it now, that they didn't really give me a child's dose. Anyway I could hear these women screaming in agony as they went through this, so I knew what was coming. It was, I think I can say, the most painful thing I've ever gone through. Worse than labor, though not nearly as long. And I didn't say a word. I just cried silently. Worse still, I learned that the procedure that tortured me was totally unnecessary, brought on by the doctor's ego in refusing to admit what the ER doctor figured out in 5 minutes. It was for nothing. So my pissed off nature at chemo in part goes back to that, among other things. We had better not be doing this for nothing.

Those experiences also colored my opinions of doctors as a whole. Even though that neurologist was a man, you will never hear me say that women doctors are better, or that they understand me better. I have had great doctors of both genders, and terrible ones as well. I've had female doctors who thought they could relate to me just for being female, and it's never really worked out. I had a wonderful male pediatrician, and a great female doctor in my teens. My current ob is very eccentric, always calling me sweetheart and punching Gabe in the arm, very gruff. But I have never once talked to a nurse on the phone in the entire time I've had him, through two pregnancies, cancer, etc. He has always listened to me, even to tell me that I'm nuts. He still answered the question, found another specialist, gave me the damn breast ultrasound order, etc.

What I want in a doctor is humanity. I prefer eccentricity actually. Just let me know there's a human being in there, so you can see that I'm human too, and I'm NOT a lab rat. For some people going through cancer, this is all new to them. I do feel like I'm in a somewhat better place, not being blindsided by some of the insanity in the medical field. Of course, I wish I had never learned any of these things when I was so little, but perhaps they have now served their purpose.

In addition to the medical lessons I learned from what I went through as a kid, I also learned how to handle being different in a situation that surprised people: the neurologist who always seemed surprised that I was cute, or bright; the other kids who said things like, I heard epileptics are retarded, to which I responded, but I'm in your class so....; the boys who took me out on dates and tried to act like they would know what to do if I had a seizure; the people who looked at me with such discomfort when I was in my wheelchair because I looked so damn...normal. Gabe said to me the other day--it's so weird that you're bald. I think of cancer patients who are bald as looking sick. And you don't--you're just bald. You look the same.

Do I? It's hard for me to see it. I don't feel like me, physically, and yet I feel like me, emotionally. Spent maybe, but me. Does that make sense? Writing this blog has a lot to do with that. It's funny how they tell you that cancer can change your life, make you re-prioritize, etc. I think the people who say that are on drugs. Every cancer survivor I've talked to has said, I'm still waiting for that moment when I'm wiser, when I can suddenly move to Tahiti and live my dream life, when I become a better person, or when I feel less haunted. Still waiting for that moment when the man (the one holding the gun at your head, who might never pull the trigger but who also never leaves) goes away.

For me, the biggest change has been in making myself write, and then finding out that other people actually read what I write. I've always been horrible at sitting down to write creative stuff. But every once in a while I make myself write a poem, usually as a present for Gabe or Lenny or to remind myself of something big, like having a baby. I have a lot of poems that I know are pretty good, but they're sitting here, unread by anyone but me. No cancer poems though, not yet. For years I thought that business writing took away my ability to write creatively, and while I still find this blog to be ridiculously self-focused and I'm surprised every time I find out someone has read it, it reminds me that cancer has not taken me from me, not yet.

Of course, it has taken parts of me, literally and figuratively. Perhaps the whole really is more than the sum of its parts. For example, looking in the mirror is still a trip. I must not be totally without humor about it though, because on my walk (I was going so fast! I felt the wind on my scalp! and then four blocks from home I hit the wall. I made it, but it wasn't pretty) I started thinking about one of my favorite pictures of Augie. It turns out the picture you see of him above was taken one year ago today exactly. I got this idea in my mind, and I started laughing. Walking along the street, bald, a day after chemo, laughing at myself.

Let's assume that I get to see my kids grow up. I will right? One day we will embarrass Augie in front of his friends by busting out this picture, and I can honestly say, see honey? You really did get your looks from me.

Day 80

So it's been 80 days. That's not even three months. It feels like a year. The hard thing is when people say that chemo will only last three more months...and that seems like such a long time. By Halloween I will be done with chemo and on to radiation but at this point that's like talking about the next millennium or something.

I have to say that this chemo round was better. Not fun, but better. It didn't start out well. I waited an hour and a half to see the oncologist--usually you just see the nurse. At one point I went outside in my gown, untied, and said "hello!" I think they had forgotten about me. The doctor saw me for literally twenty seconds. He looked at me and said, so you're fine, right? I said well, not really...I didn't sleep for a week. He just looked at me blankly and said, but no major problems, right?

I had no idea what to say to that.

Apparently the only thing that matters to him is that my numbers were fine--white blood cells, etc. I did have one number that was slightly anemic, but they weren't too worried about me. So on to chemo I went. I have to say that even though I was annoyed at everyone's attempts to say I had random things wrong with me, I really, really like this nurse. She put that iv in there like it was nothing. For that alone, I want to keep going to her. No port! Plus, the adriamycin is so toxic that if it gets into your skin, it can necrotize. So you need a good person to push that into you (two huge syringes of red koolaid looking stuff--they push it right into the iv, no drip. another reason to not have a port--imagine having someone push that into your chest!) Also I think she felt really bad for me and for my sleep issue but just didn't know what to do.

I asked for a printout of the meds that went into my iv, and I'm really glad I did that. Before chemo, and on the two days after, I take this emend pill for nausea. $100 a pop! Then there are the two chemo drugs themselves, along with five other drugs in the iv. After chemo, you have to take steroids for a few days. So when I walked into chemo the first time, with a banana and a piece of toast in my system, I walked out with 9 drugs in my body--two of them poison.

Any wonders that I had some issues?

This time, on the printout there was an X by ativan (lorazepam). I asked if they gave that to me, and she said no, since I didn't like it last time. I think that drug was a killer for me. Also, interestingly, they had my "ideal weight" listed on the printout as 126 pounds. They have my height as 5'5". Did they just decide that was an ideal weight for me or what? I haven't weighed that since maybe the winter. So at 113 I was dosed down and I think that made a huge difference as well.

Because I slept. I was nauseous within two hours of chemo and just felt awful. BUT. I slept pretty well Wednesday night. The last few nights have not been so good--three and a half hours a night, maybe. But that was with taking nothing, not even melatonin, and it makes me feel so much more human just to have that much sleep. I apparently just feel these drug effects immediately. Rather than 5-7 days to feel bone pain with the neulasta shot Gabe gave me Thursday, I felt it within 12 hours.

So sleep has gotten better, but other things have become more annoying. On the one hand, I am SO glad I buzzed my hair off. Hair loss is traumatizing not just because of the identity that goes with it and the way it makes your cancer experience so public. It is also just plain disturbing. Remember, you lose ALL your hair on this chemo. Imagine losing hair every time you go to the bathroom. When I scrub my head, little buzzed hairs fall out, and my scalp stings when I lie down on a pillow. I don't know how people do it with a full head of hair. I just really feel like something is WRONG with me. I must really be a sick person now, with hair falling out everywhere. It's awful.

The other really random chemo issue I'm having? When I'm not feeling too nauseous to eat, I still have trouble eating, since my mouth and throat are so dry. I have actually ordered something called artificial saliva. Awesome, huh? It's hard to even swallow water. But the metallic taste in my mouth isn't too bad yet, so if I use plastic-ware, I can still eat some things, especially soft or cold foods.

So though I don't feel good--woozy, dizzy, occasionally sick, tired, sensitive to light, etc...it is, again, better than last time. And I'm grateful for something else. I am really glad I didn't do that clinical trial. The drug, avastin, that I would have been offered through that (the one with the scary side effects like bowel perforation, lung fistulas, and strokes) has just been ordered off the market for breast cancer by the FDA. They have decided the drug has no benefit for advanced breast cancer, which is what it was being used for (it was developed for lung cancer I think). Since I don't have advanced breast cancer, or even node-positive cancer, I have no idea why I was offered it in the first place. It is apparently one of the most expensive drugs in the world. The main benefit seems to be to prolong life for some months for advanced cancers, and it was being tested to see if it would halt recurrence. Anyway, boy am I glad I didn't risk some insane side effects for something that would have had no benefit to me and would have been pulled from the market right in the middle of my trial!

One thing I've learned about my experience with chemo is that the Friday after is a good day for me to have some distractions. I'm so used to being home on Fridays with the kids, but I'm not up for taking care of them, so they go to school that day. Lenny had a playdate yesterday instead of school, which was good since I feel guilty about her going to school five days a week. Augie is just too hard to take care of with his insane moving around and 50 poopy diapers a day, so he goes to daycare five days most of the time too. Just a few months ago, he was only going in three days and I was nursing him 5 times a day. How things change. I'm sleeping by myself now, downstairs, to avoid the A/C on my head, and Gabe and I don't have much time together since I am often useless and he is busy around the house. It's really making things different around here. So if anyone's hanging out on a Friday after I have chemo, give me a shout. I'll be too out of it to be exciting, but no need to just get lost in my thoughts!

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.