Tuesday, October 26, 2010

Day 173: Radiation #1

I feel like I have put myself on the cancer treatment fast track. I just had my last chemo 8 days ago, and we are already pretending like that was all in the past. Of course, until I am at least 3 weeks out of chemo, I won't know if I will feel any more like my old self, since I've always had 14 or at the most 19 days between treatments. In a few weeks I'd like to take stock and see where I have ended up. I might know a little by then about how chemo has affected me in the short term.

In the meantime, I decided to just try and get radiation over with as soon as I can. Yesterday I got my tattoos--three of them. I can't actually see them, since they were placed under the sharpie and tape. They put red ink on me and inserted the needle, which felt just like a blood-draw stick for two of them. The third one hurt for about ten minutes, which surprised everyone. But the longest part was getting put into position--more on that in a minute.

I told them that I would like to start the next day, so this week I go in every day at 8:30, and I'll start at 8 next week. Once you start radiation, there's no turning back. Unless you have a truly horrible skin reaction towards the end, there's no stopping. I go every day, Monday-Friday, for 33 treatments. They give the staff Thanksgiving and the day after off, so I will go in the Sunday before Thanksgiving to make up a day. This means I should finish radiation on December 10, in time to recover for a few weeks before Christmas. Maybe by then I will be able to tell if I have serious radiation fatigue or if I'm still just exhausted from having all of these horrible hot flashes and not falling asleep until the morning (I fell asleep at 5 am last night). Maybe we will even go up north for a few days before the holidays; right now, we can't go anywhere. There are lots of maybes these days.

Regardless, I went out this morning in our crazy Chicago weather (torrential rain, incredible wind), got to the hospital and went right to the women's changing area, put on my two gowns, and started to read the paper in the waiting room. I was annoyed that they didn't come to get me until 8:40. I am trying to time this so that I can help get the kids to daycare, but also so that I can keep them home on some days. To do that, Gabe will have to stay with them until I get back, and then he won't get into work until closer to 10 due to the train schedule. So I was thinking, come on people, this is the easy stuff, I'm told. I should be in an out of here in a few minutes, right?

Well, not really. I left my house at 8:10 to go to the hospital, which is very close by, and I got home at 9:15. So this will take some time. It's a good thing that I'm not working right now. I remember when my grandma did this, she said that she looked at it like it was her job. And it is--half of it is just showing up, commuting, being on time. Even though radiation will be much easier than chemo, I think it would be more annoying to work through it--it's like a second daily grind.

And the waiting really is the hardest part. Once they were ready for me, I laid down on the same metal table they used to do the CT scan and to give me the tattoos. Then the process of prepping me began. It reminds me so much of that CT scan I did when I was 6 and I was told I couldn't move for what seemed like an eternity. There was a sheet underneath me, and they literally moved my body around by centimeters and inches by lifting the sheet. These two women put their hands under my hips and rolled me, pushed my torso to one side or another, just manipulated me until they got it right.

There are so many rules! My legs must be relaxed and not crossed. Every time I will be asked to put the fingers of my right hand in the belt loops of my pants (so, I guess I have to wear jeans, or pants or skirts with belt loops, every day). My left arm is lifted over my head and placed very exactly on a metal shelf. My head must go just like this, my butt like this, and DON'T MOVE. It's actually really hard to do. My nose started to itch right away (they say that happens to everyone), I got something in my eye, the metal table felt cold. It doesn't matter; just lie perfectly still. You can sneeze or cough, but you just have to let it go.

So there I was, immobile, waiting, staring up at this bizarre nature scene they put in the ceiling around the lasers. Then a few x-rays were taken and the treatment began. I could hear a loud buzzing, and I could see a green light, but I couldn't feel anything. I could see the green lines and red marks from the machine outlining where on my body the radiation was supposedly going, and there's something about the whole thing that is reminiscent of what they show on tv when they're portraying an alien abduction. But the strangest part is that it really is all a leap of faith. For now, they could be radiating my feet for all I know. The technician told me I would know they were getting the right spots in a few weeks, or maybe sooner, when I start to get that nice tan on my breast and chest. Until then, I need to use aquaphor on my chest twice a day to help my skin, which looks totally normal for the time being, and just take their word for it.

As an aside, I've made the mistake of looking online at pictures of radiated breasts, and it's really pretty disgusting. There's so much breast cancer hype out there, especially this month, and it's all about ribbons and teddy bears and hope. The reality is much, much uglier--truly. I know that I don't have any idea how my skin will react, and it might not be that bad, but it's hard to be optimistic after my experience with chemo.

Any way I look at it, I'm doing it, and like I said, there's no going back. I kept meaning to have a photographer or someone take pictures of my breasts before I went through radiation, but there hasn't been much time. I thought I would do it after chemo, but then I was all marked up the day after chemo ended. Gabe did take some pictures yesterday, so if my left breast just looks atrocious I can remember what it was like to have normal-ish breasts, even with the scars and the marks. I've been sad about this for the last few days. I still do like my boobs. You can call me vain, or tell me it's irrelevant, but I just don't like the idea of the disfigurement at this age or stage of my life. Maybe it would never be easy, but it really isn't now. Of course, in all these pictures, I'm still pretty much bald, so that's a disfigurement in a way as well, and I've gotten surprisingly used to that.

Perhaps someday, when the skin goes back to normal (the doctor says it will eventually be the color of the skin on my face, and while that breast will be firmer and the skin tauter, it will be hard to tell), I will take some more pictures. I wish I had been less shy when I was younger--I should have taken a thousand pictures of my boobs! They were awesome! Now it's hard for me not to see them as some harbingers of suffering, even though they look pretty good in the shots we took, all things considered (and no, I won't be sharing). Gabe said, see, you've had two kids AND nursed AND had breast cancer and they still look good. I'm glad at least he thinks so!

I don't know why the potential effects of radiation on my breast bothers me more than the scars from the surgeries. Those don't bother me at all. I've never minded scars, as they are just reminders that something happened that you are supposed to remember. I actually kind of like them, and I'm lucky enough to be married to someone who likes scars and stretch marks as well. He's weird enough to think they're sexy. It's also good to be married to someone who is so hell-bent on the idea that I am the only person in the world he wants now or ever, even if I don't believe that's true, or that it needs to be true to be real love. It's not like it's a contest, and only those people pledging eternal loyalty can win.

I'm saying these things here in a way to acknowledge that I have never really put into words how hard breast cancer has been on my marriage. You think having two small kids is tough, juggling work, dealing with this economy? I used to think so, but I was pretty much wrong. We already had issues, like everyone does, but this has been some real bullshit that has affected just about every aspect of marriage, including ones I didn't know existed. I've heard that while the divorce rate is 50% for the general population, it is more like 67% for people where one partner has cancer. In fact, 80% of couples divorce if the woman has cancer, compared to 20% if the man does. This is due to the fact that men have a tough time dealing, and to the fact that women feel too guilty to leave a sick spouse. I don't remember where I was reading this but it disturbed me at the time. So while I feel like we have had some big struggles, at the end of the day, we've done pretty good, all things considered. We still have romance and fun and passion and all that stuff.

But we also have some strange conversations. The other day I was talking with some girlfriends about birth control, a common topic for those with busy little kids. Now I can't take anything with hormones, and I think about 20 doctors would kill me if I got pregnant. It's easy enough to just use barrier birth control. In the long term though, it makes the most sense to have a more permanent solution. I'm not going through a six week recovery and another major surgery to get my tubes tied, so that leaves a vasectomy. We always planned on doing that anyway. This seems like a no-brainer to me. I think every man in my extended family had one back in the day. My parents chose to cap their family at age 25 or 26. And Gabe doesn't have a problem with it, so I told my friends that we would do that once I'm through with cancer treatment.

But then I started thinking about it. The next day I told Gabe about the conversation and I said, you know what? I think you should wait. I don't think you should do it. Recently, he has seemed sad about not being able to have more kids. Augie runs us ragged, and especially runs him ragged these days, but he's been talking about how cute he is and getting wistful about babies. So I took a deep breath and said, look. What if I die? You should be able to have kids with someone else.

And that's the closest I think I've ever come to getting hit by my husband. Not really, but boy, was he mad at me. I think he would get the operation just to prove he was serious when he said he wouldn't want to have kids with anyone else ever and that I was going to bury him first and all that. Even if it's not true. It just made me realize that while couples all talk about these things, for a while at least, our conversations will be just a little different. It also made me realize that one of the biggest burdens of cancer is that elephant in the room. Just like my bald head is the physical manifestation of the elephant in the room that is my cancer, pretending that death doesn't exist is the emotional equivalent.

As cancer patients or survivors we are not supposed to talk about the Big D. It's too hard on everyone else and it sure as hell doesn't qualify as "positive thinking." But if I can't mention these feelings to my husband of all people, what the hell else am I supposed to do with the fact that I think about things like this every single day? Some people think, what if I regret not being able to have another child if my husband has a vasectomy? I think, how would I deal with the guilt of knowing that I left two kids motherless as well as one man alone and unable to have more kids if he has a vasectomy? I have normal conversations, and in the back of my mind, that's the kind of stuff that pops up, and that probably always will. I don't feel like I need a support group or a therapist to deal with that. I just need to be able to mention it every once in a while, without folks acting like I just made death up as a concept out of spite.

On that note, or actually totally unrelated to that note, I'm going to do something here that I haven't done before--include a poem. You would think that now that I've been off of work for a few weeks I would do some creative writing or something. Not so much. I'm exhausted due to lack of sleep, and when I'm not trying to nap or going to the hospital, I try to get some exercise, do housework, go to the grocery store. There's not a lot of time for writing, especially since I write this blog. This takes up all my mental energy right now. Also, I think I need to be a few steps away from cancer to really be able to write about it in a creative way. I hope I have a chance to get a few steps away from it, that this treatment that will end in December will be it, but you never know. Anyway, writing this blog today made me think about a poem I wrote about 10 years ago on a napkin in a coffeeshop after watching this young woman talk with her boyfriend at a nearby table. I don't think this poem is particularly good, but it is a poem about scars, and how many of those are there? That's a good question, actually. Feel free to send some my way if you find any. Meanwhile, here's mine, for what it's worth.

Accidental Figure Model

The art of the body is so beautiful in women,
and you--you could be the subject
or the object for all the masters,
their reason for expending time and sanity
to recapture what could never
really be captured at all--your youth,
your style, the intensity of your made-up eyes,
bones angling and curving in ways
that are usually only theoretical,
but even more than that--your grace,
a presence that remains in the aftermath
of your sly grin, which could bring
a more personal closeness and character
to the eventual art of you,
the focal point of the memories
forever accredited to you.

If I could take these hands and make them move
in a way that could even come close to capturing you,
I would create mostly this:
A view from the side, a peripheral vision
of your ethereal arm, so thin and purposeful,
so brightly olive on this dark day,
making waves of motion for emphasis,
showing off the long, deep scar
that runs from your beautiful shoulder
down to your perfectly constructed elbow,
shouting out, I'm real, something else made me
before you ever came along.

Wednesday, October 20, 2010

Day 167: Mapping Phase One

Obviously I didn't write about the mapping experience yesterday. It's for a good reason--there's not that much to say. It was totally painless. I didn't need the radioactive injection and the CT scan didn't involve any sort of red-hot burning dye like the one I had to do in the ER last month. I don't get my tattoos until next week, apparently. So what happened? Well, I met with the young radiation oncologist, who is a very nice doctor. He doesn't talk much but answers my questions and seems to care. He comes across as strangely shy but knows how to laugh. He is also somehow one of the leading radiology oncologists in the country in his specialty (which is a type of radiation that doesn't apply to me, but that's another story).

I even asked him why I need to do radiation since my tumors are gone and I've done chemo. He said that without radiation there is a 30% chance of recurrence in the same breast; with it, it's still 10%. I really don't like to hear that, so I tell myself that those percentages are based on all breast cancers, of all stages, so I shouldn't worry about the 10%. What the hell else am I going to do? Any place I turn, there's some number telling me things might not turn out well. I just have to say that especially now that I completed 8 rounds of chemo, once radiation is done I will have done everything I could to survive this beast. There's nothing else in the arsenal for us triple negatives, after all.

Once he answered all my questions he asked me to lie back so he could draw on my chest. And then--that's what he did. He drew some lines with a black sharpie and told me to get dressed. I went in for the CT scan to get mapped, and there was even more sharpie, augmented with ...tape. To me, this is one of the most humorous aspects of breast cancer. It is just like the sentinel node mapping. You have this ridiculously sophisticated and expensive technology--CT scans, radioactive mapping, etc., but what it comes down to is a sharpie, some tape, and, what are those things called...protractors? The technician used one of those to measure me. Seriously. It was cold and metal and she was drawing on me like we used to do in math class in the early 90s. This picture is the result. Now perhaps no one really wants to see this, but I find it kind of fascinating, and it's my blog, so I guess I can include this weirdness and just assume people will ignore it if it's too disturbing.

Once the protractor was put away, that was it. Now they get their physics people to look at my map, they call me back in early next week, and I get my tattoos placed if everything lines up correctly. In the meantime, I need to make sure the marker doesn't wash off, and in fact I am supposed to keep this sharpie map until radiation is over, even though I will have the tattoos. This makes it kind of difficult to wear anything at all low-cut, so all of my vneck sweaters are going to be on hiatus. I guess it's good I'm not doing this in the summer--at least in winter I can wear turtlenecks. Of course, right now, it's beautiful and it's the sunniest fall we've had since the year I was born, so I'm not ready for all winter wear just yet. Oh well.

The doctor told me I could start radiation as early as next week if I was feeling up to it. He understands that I want to be done before Christmas. It's hard to imagine starting that routine so soon, and yet the thought of having this all over with is really the only thought that's keeping me going right now. I know I might get extremely tired on radiation, and that is the tiredness that is cumulative and lasts beyond the treatment itself. My chemo tiredness has always faded once the poison finds its way out of my body. I know I might have a severe skin reaction, though I'm told that being fair is no indicator of that. I know that radiation won't be any walk in the park.

But it can't be like chemo, right? Chemo and its crazy side effects. I had my tomato face and shortness of breath yesterday, so I went for the zyrtec. That helped, but I still gained 4.5 pounds of water weight, which I subsequently lost today by alternately being sick and peeing a thousand times. However, my bone pain has been very mild. Today should have been my worst day--but I didn't take the neulasta, so I actually felt pretty good. I guess if I hadn't needed neulasta, I would have tolerated taxol a lot better, regardless of the allergic reaction. But no matter--it's over now.

I keep saying that to myself--chemo is over! No more chemo! I feel that I need to keep telling myself that or it won't really be true. Because if it's true, that means that somewhere down the line there's an end to this treatment, and then what? What happens next? Maybe I need to get out a sharpie and a protractor and make up my own map, draw some lines to somewhere really good, far away from cancer land, somewhere that will take me at least thirty years to get to, maybe even fifty, where there are grandkids and old age and things like that. But first, I guess I need to let these doctors follow this map on my chest.

Monday, October 18, 2010

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.

Wednesday, October 13, 2010

Day 160

It's interesting how a person can be simultaneously thrilled by something and terrified of it at the same time. I absolutely can't wait for my last chemo. I would do it today if I could. On the other hand, I'm so afraid they will send me away due to bad #s, and I will be crushed. I worry that I will have a more severe allergic reaction or my heart will not react well again, or that other side effects that I have somehow avoided, like neuropathy or dead fingernails, will happen with the last one. I worry about not doing neulasta and that I will get an infection when I have no white blood cells left for a few weeks. And yet, I am ecstatic that I don't have to do that shot again.

It's funny how you can get used to things. My eyebrows are largely gone, as are my eyelashes, but since they're not entirely gone and they're so fair anyway, it doesn't look that weird to me. Maybe I'm just telling myself that. I've also gotten used to being tired, to the point where it doesn't affect me that much. However, sometimes I can't tell if I'm tired due to chemo fatigue or due to the fact that I never sleep because of these damn hot flashes. Seriously, I have two an hour all night long. I often don't fall asleep until 3 am. I end up missing breakfast with the kids almost every day since Gabe lets me sleep and I'm too exhausted to know what time it is. Acupuncture has not been helping with this, much to my dismay. I did it yesterday and it seemed to help for about 12 hours, but that doesn't really cut it. Oh well--I'm going to keep it up anyway. Maybe it's helped with my immune system, which I will need since I won't take the neulasta this time.

The woman who has been doing acupuncture for me is a breast cancer survivor herself. She does the free acupuncture for the hospital that I will be going to for radiation as well. Ironically, she was doing that before she was diagnosed 10 years ago. So she knows all about breast cancer both from her own perspective and from seeing so many other women who have gone through it. Though she didn't have to do chemo, it is so refreshing to not have to explain everything about what I'm going through. When she asked me what type of chemo I'm doing and I said taxol, she said, well that explains the hot flashes. And she offered to do special acupuncture on my spine for bone pain without my asking.

She also referred me to an organization called ROW, Recovery on the Water. I am very intrigued by this. It's basically a bunch of breast cancer survivors who row on the Chicago river. That sounds like my kind of support group--the kind where you exercise and don't have to talk about cancer--if I can find the time to do it once this treatment is over. I mentioned to the acupuncturist that I wondered if it was true that things got worse emotionally once treatment is over--something I've heard many times. She said she sees that happen, but she doesn't think it will happen to me. Why not? Well, you seem to be a realist. You don't strike me as someone who has been in denial. The women who tell everyone they're fine, who are all smiles, they're the ones I worry about later.

That gave me some food for thought. Could it be that hating chemo is good? That crying and being terrified and hating cancer from day one might have helped me? I have no idea. I do know that it would be hard for me to imagine a time that would be harder emotionally than the entire span of May 4-June 25. Sometimes I can't even believe I had that conversation on the phone with the radiologist who told me I had cancer. And everything that happened after that--finding out I was triple negative, that I had three tumors, waiting for the BRCA test, during which time I had no idea if I was going to have to lose both breasts and my ovaries, going through surgery and not knowing until then if my nodes were involved or what stage I was, finding out I would have to do surgery again, not knowing until two days after that if my margins were clear, and therefore not knowing if I would need a mastectomy still, having my chemo put off, not knowing what chemo to choose or what to expect--my god, it was a total nightmare. How did I go to work and get in front of a crowd to speak at my conference? I remember talking to people and thinking, the next time I see you I will be bald. And that terrified me too.

So I can imagine that I will feel somewhat adrift in January, when as a triple negative survivor they tell me, ok you're done, go home and resume your life. This will be somewhat difficult after spending 8 months in treatment for cancer. I will be terrified of every mammogram, especially those first few, since I will be so close to being out of treatment that I will want to just lay down and die if I have to do it again so soon. But will it be harder than what I already did? I just don't see it. It's not like I will suddenly realize that cancer could kill me or that this is really happening. It's not like I will suddenly cry for the first time or stop being brave. I've been crying and scared the whole time.

I'm starting to really appreciate some of the other things that happened to me that helped mentally prepare me for dealing with cancer. The epilepsy, the car accident. Because I know what it's like to have something in the back of your mind all the time that is not in the back of most people's minds. A few months before I was diagnosed I wrote a short essay for the website of CURE, Citizens United for Research in Epilepsy, because I know the founder and I had offered to do something writing-related for them. They have a lot of really heart-wrenching stories on the site, and I worried that mine would seem pretty lame by comparison. Most are not written by people with epilepsy, but rather by their families. In some cases that is because the person in question died, or is too incapacitated by epilepsy to write for themselves. The stories that are written by those personally dealing with epilepsy involve current struggles.

I haven't had a seizure in 20 years and I stopped taking medication when I was 17, so I wrote about my childhood with epilepsy, but also about how it is always there with me. You are never "cured" from epilepsy. It can always come back; when I got pregnant, I was anxious for months each time that the hormonal changes would give me seizures. I worry about my kids having seizures, but also about my ability to take care of them if I have epilepsy again, and that some of these cancer drugs might trigger seizures. I'm the crazy mother who snaps my fingers in front of my daughter's face when she doesn't respond to me, and I yell at her, not because I'm mad, but because I think she's having a seizure instead of just ignoring me. I'm the one who sees my son being aggressive or not forming words and where some people would worry about autism, I worry about that out loud but secretly wonder if he's having seizures at night, which is a big cause of speech and developmental delays.

If you're interested in the story, check out http://www.cureepilepsy.org/home.asp and look for "Katy's Story" on the lefthand column. You should also read the other stories; this is a great organization. Anyway, the grand irony is that at the end of the story I wrote about how I felt like I'd dodged a lot of bullets in my life and I worried that the next one would get me. And then I was diagnosed with an aggressive form of breast cancer for which there is no treatment except chemo. Is this my bullet? I don't know, but I think I do know how to weave it into whatever is left of my life, because to a smaller extent I've had to do that before.

Or at least I hope so--I want to come back, be me again. For a while that will be a mangy-haired, tired, menopausal, radiation-burned, haunted version of myself, but it's what I'm looking forward to as my new years resolution. In the meantime, I can always be someone else. Lenny had asked me to get a green wig to be a witch for Halloween, and I couldn't find one anywhere. I have a long purple one and a witch's hat. But then I came across this "English mod wig" and thought, you know what, that looks dope. I wore it to pick her up from school yesterday and she loved it. The other kids didn't even notice, so I wonder how I can think they would notice me bald. And the teachers loved it too. Do I look mod? Do the mod Brits have electric green hair? Who knows, but when I put that wig on I'm doing it for fun, not to pretend I don't have cancer and that I'm normal. I think the normal came out of the equation a long time ago, perhaps I've never really been normal, so maybe that shouldn't be the goal after all.

Saturday, October 9, 2010

Day 156: Starting the New Normal

For the last few days, I've felt almost normal. I even forgot to take my beta blocker yesterday, to no apparent ill effect. I've been taking allergy medicine for the reaction I was having to taxol, including this mysterious rash on my ankles and feet that I was at first convinced was bedbugs. (I thought maybe bedbugs were like mosquitoes and they all just flocked to me, ignoring everyone else, including Gabe, but I'm told that's not the case.) Everything seems to have subsided. So while I'm tired, I am starting to understand what everyone is talking about when they mention the new normal.

Because it isn't like it used to be. We went out last night, and I saw Gabe sing karaoke for the first time in the 7.5 years we've been together. He was careful to pick very cheerful songs, including You make me feel so young. There was a guy at this place celebrating his birthday and he was singing Only the good die young. Gabe loves Billy Joel (not my favorite, I'll admit) so I said, that guy did it first! Gabe noted that it would be a party foul for him to sing that song.

Oh, right. True. We wouldn't have thought of that before all this started. I also ate a lot of pizza, way more than I've been able to eat for a long time, and I said something about eating too much, or worrying about gaining weight. Gabe said he wanted me to weigh 120 pounds again. Why, am I too skinny? Well, what did you weigh before May? Maybe around 119, 120. I guess that even though my weight loss is unrelated to cancer, below 120 is like my BC size. My size-2-ness must remind him that I'm different than I used to be, and "used to be" does not mean the things for us that it means for other couples. You know, some people say, how we used to be, and they mean, when we were dating, before we had kids, when we first met, when we lived in separate apartments, before we slept together, when we were young. For us, it means, before I had cancer, before my body became an enemy on top of all the other things that my body used to be.

Everything is a reminder, even when it seems like everything should be the same. I'm still bald in all the pictures, though my head is fuzzy now with translucent hair, and I need to shave my legs again. My left eyebrow is pretty much toast, but I've learned to use the eyebrow shadow from the cancer shop. Sometimes I stop and wonder why my boob is hurting. Oh, right, those surgeries. The ones that took out the CANCER. I remember when it was just a time of the month problem, which of course I don't have now, having lost my time of the month to chemo.

Sometimes the nerve pain in my arm returns, usually while doing something like driving. (Talk about normal--I drove to Indiana and back today, and had energy and could see normally and everything! and I still hate Indiana drivers!). And I do things like pick up both my kids, carry a bunch of apples or a pumpkin, push a stroller filled with groceries and babies, and I remember: I'm not supposed to do these things.

They used to tell women who had breast cancer that they could never lift more than 15 pounds for the rest of their lives. Even today, I have been told by some doctors to not even lift my purse on the left side. I am supposed to wear gloves to wash dishes, always put sunscreen on the left arm, favor it when exercising. All to avoid lymphedema, a swelling of the arm that could happen at any time when your lymph nodes are removed.

I hear these things and I just think, yeah right. 15 pounds? My son weighs 25. I'm right handed, so of course I pick him up on the left side. I walked Lenny to school yesterday and she fell, skinning her knee, so I had to pick her up and carry her the last block. She weighs 29 pounds. There are lots of dishes in this house. It's October, and the sunscreen has been put away except for the stuff I put on my face and my head. I'm supposed to lift weights and exercise in order to help stop the chance of a recurrence. But what, only on the right side? Just to look extra lopsided, or what?

I do these things anyway, with some measure of caution, since if I am going to live a while, which is fairly possible I suppose, I have to actually live. I've learned that lesson before--reminders are just that. If your liver is enlarged, you remember not to drink a lot. If bright lights hurt your eyes, you remember not to look into them to avoid having seizures. You don't know how to play video games, you don't dance at places with strobes. When it rains, your hips hurt. Your kids come out early because your body knows better than to try to deliver them at term.

So it is with this. People in crowds look at me and I remember I'm bald. That one's on me, I know. I wore my hair and a a hat to an event at Lenny's school the other day. We met a couple there; they have a daughter in Lenny's school and another one at Augie's daycare. I saw the dad the next day at Lenny's school and he didn't recognize me. I said hello, he looked at me strangely and I realized I just had a scarf on my head. Today, we made it apple picking, though we were too late in the season to pick our own apples. At one point an older man came up to me and asked how I was doing. When I said I was fine, I knew what was coming. Are you a survivor? Yes, I am. He started telling me that his wife just lost her hair for the second time, right after she was able to make her first appointment with the hairdresser. He said her lung cancer had metastisized to her brain and she had six tumors. She never complained, they never talked about it much at all. I said well, I sure have complained about chemo. He laughed--I guess it's no fun for her either; she sits in bed a lot eating cheetos because that's all she can tolerate.

There's one picture of cancer. A woman sitting silently in bed eating junk so she won't vomit, not talking to her husband, who clearly needs to talk to someone or he wouldn't be randomly accosting bald women in the apple orchard. And he said she was so disappointed--about her hair, she was so happy to have it back. I thought, she just couldn't tell you that it wasn't disappointment, it was terror, and it wasn't about her hair, it was about those brain tumors. I wanted to say, this is the last thing I need to hear right now, but I knew he needed to tell me, just like the owner of our favorite restaurant told us a long story last weekend about how he understood what I was going through because he had a scare with stomach cancer.

But a scare is not cancer, and your hair is not your brain, and looking and feeling somewhat normal is not the same as how it was back on May 3, back when I was a different Katy that people could relate to more easily. And maybe that's what I need to do--be more like that Katy, less focused on what's happening in this body of mine. Maybe, but maybe not. Perhaps being stoic saves some of those around you from the pain, but it doesn't seem that it helps those who are the very closest to you at all. Because then they need to be stoic too. And I am not married to a stoic man, and my kids aren't stoic either. I'm sure there are a lot of people who would rather not know the things they learn here in this blog, or who would rather see me with a wig on, or who are more likely to want to talk to me in January. In the meantime I think about these reminders, and I feel like I'm almost on the other end of cancer treatment, the part where I try and go about my business, my non-cancer business.

For now, I'm all cancer, all the time. At least in theory. I'm not working anymore. I've started the three week leave I need to take to qualify for short term disability. Once that's over, I might go back to work sporadically, or I might not go back at all until I'm done with radiation. I just don't know--I'm tired. I worked a mostly normal schedule for five months after diagnosis, while trying and often failing to take care of two little kids. For some women, work is a distraction from cancer. For me, I have two little distractions at home, and work--while it helped to feel productive, get out of the house, and take the train and interact with other adults--took me away from them quite a bit. Once my WBCs tanked and then I was in the hospital for my heart, I thought, what the hell am I doing? I need to be home and just get through this. Get it over with, plan some holidays, do some yard work, go to acupuncture without risking my life in cabs every time.

Ah, acupuncture, how I love thee. It hasn't helped much with these hot flashes, but I'll give it some time. And I've had a few massages as well, since taxol does such a horrible number on your bones and joints. The first time I went it was a strange experience. I've had many massages before, and I've had them from this same masseuse several times. This time I was so floored by the feeling of her hands on my back, my toes, my bald head, my tailbone, legs, my neck. I thought, this feels so good! Someone touching me in a healing type of way, without sadness, without fear, when for an hour my body could be a friend again, rather than an enemy. It's interesting how you are touched less with cancer. Fewer hugs from friends, more distance. I'm not the most affectionate person anyway, but again, it's a reminder. And Gabe and I have been torn from each other in some ways--sleeping apart, him taking care of me, me staying somewhere else when people are sick. I told him once that I thought he was much less affectionate since I got cancer (I never say since I've been sick--I don't feel sick. I feel like a person with cancer), or more specifically since I started chemo. It's because I'm bald, right? Because I'm unattractive now. He has convinced me to some extent that this isn't true, that he likes how I look bald and the rest of me looks the same (really? that slight dent in my breast, those scars?) but that he didn't want to bother me, to annoy me, or make me sick if he was sick.

I have never liked to be bothered. That's what's funny about the massages. I always hated back rubs. My mom and brother used to rub each others' backs and I would try it only to feel like I was crawling out of my skin. And boys, or men, would try to rub my back but as everyone knows, only for ulterior reasons and it always seemed to me like a waste of time when you could just get to the point. I like to spoon, until I am sleeping, then I want to be left alone. But I do love a massage, and even more so now, when I am alone so much more of the time. It's like prostitution in a way, isn't it? You don't have to give anything in return, nothing but money.

Maybe I won't be a new-ager after all, not with those types of comparisons. I'm laughing right now, thinking about the time when I went to chemo by myself, and there was a woman there who was sitting on the floor in the waiting room, bowed over like she was praying. Her husband was sitting on the couch with their bags, and a volunteer came over and asked if she was just meditating or if she needed medical assistance. She got up and said, I'm fine, I just don't believe in chairs.

I was hiding my face behind my People at that one, trying not to laugh. But then she was called back for her bloodwork and her husband came with her and I realized what was happening and I felt a pang in my heart instead. This was her first time. If it hadn't been, she wouldn't have brought him back for the blood draw. They came back a few minutes later and she sat on the floor again, head down. I felt for her, and wanted to say something about how it would be ok, but how would that sound coming from me, with all my chemo issues? She looked up at me and I was about to ask her if it was her first chemo (of course it was, she had a full head of hair), but then she looked down. I realize now I was like the guy in the orchard to her. A portent of bad things to come. Bald, by myself, reading trashy magazines, resigned to the routine. So I didn't say a thing. If it helps to believe in the floor, believe in it then. Do what you need to do.

The chemo nurse told me to bring my party shoes on October 18. I've been putting a lot of thought into that actually. There are deep cancer moments, moments of fear and faith and resignation. And there are those moments where I wonder if I should wear heels or cowboy boots, red or purple or brown, if my party shoes should be comfortable or impractical for that last chemo. After all, some people don't believe in chairs, I don't believe in ugly shoes. Until that day, and for many after that when I am doing radiation and everything else, I will continue my massages, and my acupuncture, and my allergy medications. I will keep up with my blog writing, pizza eating, laughing, bitching, lovemaking, sleeping, crying, hot flashing, and whatever else I'm still good at doing. And then, nine days from now, if all goes as planned, will be the last time I will need to go in that room and sit up straight in that chair in the waiting room and go through all the rest of it. I have to tell myself that, that it's almost over, that it won't come back. It goes through my head in a continuous loop. One more, one more, one more. Only one.

Tuesday, October 5, 2010

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!!