Wednesday, June 16, 2010

Day 42: Waiting Blog

I haven't written anything in a while, because I have been knee-deep in this new brand of torture called continued waiting. I won't know if I can even have surgery next week until Friday. Even then, I will have to wait once more to get my second pathology back and find out if my margins are clear. I can't make my treatment schedule until all that is known. In the meantime, I have met with my oncologist and am now immersed in my second-favorite torture technique--making impossible decisions. So blogging has kind of been on the backburner.

But life keeps on rolling. On Monday, Gabe turned 35. Lenny made him a really cute card with a picture of our family and our backyard. All of us have really long legs for some reason. During work we went out to lunch and later he got a homemade brownie sundae with a few candles and we sang happy birthday. I didn't get him a card or any presents. I'm usually very good about that, but I guess I can make it up to him next year. We spent the morning at the oncologist's office, where we thought we received some excellent news and Gabe was considering that his birthday present. Gabe was crying with relief when the onc told us I could do 4--only 4--rounds of a chemo called TC every 3 weeks (taxotere and cytoxan). Only three months of chemo! I was expecting six. We couldn't believe it.

We discussed the possibility of this clinical trial as well, where I would do 4 rounds of AC (adriomycin) every two or three weeks followed by 12 rounds of weekly Taxol (ACT chemo). The double blind trial included the addition of this other non-chemo drug that they're testing to see if it helps fight recurrence. Gabe said, three months of chemo versus 5 or 6? That sounds too good to be true. What's the catch? The oncologist, who was fairly abrupt and clinical, and kind of dismissive of the idea that I would have any serious side effects, said that there was no catch.

Well, enter the Internet.

The company that makes Taxotere is being sued in France. There are some non-peer-reviewed studies that show a 3-6% chance that the drug causes, get this--permanent baldness. The company has changed their website to say "generally, after treatment, hair begins to grow back." Generally. No other chemo has been associated with this problem that I can see. Some people end up with different colored hair, thinner hair, curly hair--but they end up with hair. Imagine ANY other side effect that Katy could accept at that small percentage. This is not one. Now, I have talked to people who took Taxotere. I have asked the entire oncology team at Northwestern about this. No one has heard of this happening or seen it happen. Maybe there's something weird in France and the UK, but there are websites dedicated to this that include women in the states as well. The entire time I would be bald, and the months after that it would take for my hair to grow in, I would probably be totally insane, assuming it was forever. Women with this problem say they don't even remember their cancer, but every day they look at themselves in the mirror, or refuse to, and hate what they see and feel like cancer patients even though they're not anymore.

People are relatively dismissive of this baldness issue. When you talk about it, the responses are the same. It will grow back. It's just hair. Be glad you're alive. You'll still be beautiful. These people generally have hair, so I don't know how they know that. At the same time, people--often the same ones-- refer to me by my hair. Another mom at Augie's daycare forgot his name and told the daycare provider, "you know, the baby whose mom has long red hair." If men look at me I'm not stupid enough not to know why. Women ask me if my hair is natural, what I do with it. I've often been the object of hair envy. I've always appreciated it--I cut it three times a year, wash it, and walk out the door, and it looks great. Believe me, I don't feel vain saying that. I might as well be talking about the hair that lives down the street. It's not mine anymore. It's leaving me, along with my eyebrows, eyelashes, and all my other hair. Soon. This keeps me up at night, more than the fact that I don't look at my boobs anymore either, though I always liked them too; the scar is pretty raw looking these days and I just don't want to see it.

I couldn't be bald forever and be myself. I know that.

Which leaves me with ACT. I was confused about whether I was being offered that type of chemo even if I didn't do the clinical trial, which I definitely don't want to do after reading the precautionary statements about it. Forget how common the side effects are--the serious ones with this non-chemo drug are scary as hell. Liver damage, stroke, bowel perforation, fistulas in your lungs, etc. And it's not even a trial for a drug for triple negative cancer, which might appeal to me. So I'm freaking out, thinking I only have these two bad options.

It turns out I have the option of doing ACT without the trial: 4 rounds of AC every two weeks, followed by 4 rounds of Taxol every 2 weeks for four months of chemo. That's not much more than 3, but there are big disadvantages here too. AC has a 3% chance of causing heart failure, so you have to have your heart checked beforehand and monitored. You have to inject yourself with a drug the day after chemo to stop all your white blood cells from dying. It causes severe nausea, so you have to take a LOT of steroids to prevent that. It makes your pee turn blood red for days, though it's not blood, it's just red medicine. All Taxanes cause neuropathy, I guess--the nurse said they "expect" that. She also said Taxol causes it more often than Taxotere. Everyone I've talked to who did AC said it was brutal. So here's another impossible decision, though I can't even make it until I know what's going on with surgery. But I think I know where I'm going to end up.

Say what you will, I'd rather risk the heart failure than the permanent baldness.

I mean, assuming I live through the treatment, my heart will go back to normal. I'm young and healthy and should be able to take it, though I will suffer just like everyone else. Being bald forever? Not even if it's a small chance.

There's another reason I haven't written a blog in a while. This blog has a few purposes for me. One, it helps inform people of what's going on and I don't have to explain it. Two, it helps me process what has happened. I read back on these blogs a million times. When I read them I can say, yes that is what happened, or that is what is happening, but it's kind of like reading about someone else. It takes it out of my head and into a foreign space where I can analyze it. But alternately, writing down these feelings makes them real. If I admit to being vulnerable or scared or sad to Gabe or my mom or a friend, that's different than admitting it to the whole world. Writing it makes it true. And I just couldn't admit to how I've been feeling this last week.

I'm just not a chipper person. But I'm not pessimistic either. I'm pretty pragmatic. But every time I've allowed myself to get too positive with this cancer situation, I've been punched in the gut afterwards. Oh, it's just a clogged duct. Well, it's probably a common form of cancer. At least I'm done with surgery.

No, no, no. Now I know I have received good news. BRCA negative, stage one, no node involvement. The relief that goes along with these things is hard to describe. But the wrenching devastation with these other setbacks, and the subsequent waiting and inability to do anything as a next step, makes me feel something I have rarely felt in my life--defeated. Not defeated as in, I can't go about my day, but just emotionally exhausted. That's how the bald thing makes me feel too, even though it hasn't happened yet. I'm not really vain, but I have always had decent self esteem about how I look. I know people find me attractive, and even when hugely pregnant or 20 pounds too heavy or while sitting in a wheelchair I could rely on my hair to make me look presentable. Those days are almost over, and anticipating that is awful.

Now I am feeling something else I have honestly never really felt--envy. I've always been pretty happy for other people's happiness and relatively satisfied with my own situation, even though I get annoyed and cranky at the drop of a hat. Envy is just new to me. I worked out at the gym at work yesterday, keeping my left arm down at my side during all the arm exercises while people looked at me funny, and I felt so envious of the young women with long hair and working bodies. I look like one of them, but I'm not. I envy my friends who are doing things I don't even want to do, like have babies. I envy old women for getting to be old. I envy people with cancer that doesn't make them have to do chemo. I envy random strangers just for their randomness.

Every time I went through something hard as a kid, like epilepsy or the car accident, I can honestly say I never felt envy and I never felt like a victim. I think that has to do with being a kid and not really being able to see the world outside of your small version of it. Now that I'm an adult, it's different. Envy is an alien feeling to me and it's alienating at the same time. Admitting that I feel that way is hard, because I fear it will alienate me further from people. Just as I will not look like me, I feel like cancer has changed me on the inside as well. People are being wonderful about wanting to help us, and we've received some wonderful gifts even before I had surgery, such as plants and flowers in our yard. I've received mixes from two people already and chemo hasn't started. I know I have a lot of love.

But why do I have it? I worry about this cancer-related stuff being my only way of interacting with people. So I'll put a shout out to Chicago-area folks here. If you're doing something you think I'd like, invite me along. I can still eat and even have a drink before chemo starts, which I hope will be around July 8. I have been too overwhelmed to do the social planning I used to be so good at doing (well, I wasn't so great at it post-kids, but I was still pretty social considering our lack of babysitters). That doesn't mean I don't want to go out, it just means I am poring over cancer-related material rather than picking up the phone. If you call me, I might not be able to do something due to surgery or whatever, but what the hell, invite me anyway. If my only relationship with people is their casseroles or baby-watching, it will be easy for me and everyone else to forget why anyone wanted to hang out with me in the first place. I know I've already forgotten in the not quite two months that feels like two years since my diagnosis. Was I funny? Interesting? Easy to talk to? Hell if I know. Maybe just because my kids are really cute? Hey, that's fine with me, they're still the same. Very high levels of cuteness there.

Don't think from reading this that I'm depressed. I'm not. I'm sad, and very scared, and envious, and angry and wistful. I'm grieving, and I hate it because I have never grieved over MYSELF before, and it feels selfish. But I know it's real, and I'd rather feel it and get through it than go on drugs to make me not feel it at all. I also wish science were better. I am stage one, so there's probably an 85% chance that my cancer would never come back or spread. I'm going to go through chemo and radiation because I could be in the 15%, but there's no way to know who is who.

I'm more and more convinced that attitude is irrelevant. What amazes me is how you just keep going. I'm working, playing with the kids to the extent I can with my lifting restrictions, making dinner, cleaning, talking to people when they call me. Considering the emotional disaster that I am, I think that's enough.

And it's not just me, it's every young person with cancer. Be cranky, or mad, or be a fighter or feel bad for yourself or be super positive, I don't think that's the point. Wake up every day and face it, that's the important part.

I never want to call anyone out in this blog, and I've chosen to only identify my immediate family when I'm talking about people. So I won't do that here, but I wanted to mention something. On the day I received my pathology report that told me I had a positive margin, I ran into someone I know in the cancer center. I said I hoped she wasn't there for the same reason as me. She was, but for a different type of cancer. We will reconnect through this, hopefully help each other out. If she reads this it's up to her to identify herself or not. But I am hoping she reads this so I can tell her something. No offense, but I really wish I had never seen you again, because I wish we both didn't have cancer and that we were living our old lives. Cancer is not a gift, you don't end up better for it. But you take the solace you can from the people around you, and if science permits, you end up. One of these days.


  1. You know, it’s not about “hair,” it’s about quality of life. And you make the call on what that is for you. So if *your* quality of life will be maintained by having *your* hair, then that’s what it is. Period. To channel your student council election campaign:

    Go With the ‘Fro!

    Also, regardless of your ambivalence towards attitude, I personally am becoming a big fan of your very honest, brave (stare it in the face), and productive attitude. I mean, you could be in total denial in bed with the covers pulled up over your head right now and on the list for some drug that's gonna make you look like Yoda for the rest of your life. Instead, however, you are up and about; and researching your options; and being engaged with your kids; and reading potentially unhelpful blog responses from your overbearing childhood friend.

    You may be crying all the way through it, but that makes it all the more impressive because you’re still going. …And soliciting invitations to go out and party, I might add! Nice. Very nice.

    By the way, I told Mom what you said about cancer not being a gift, and I believe her exact response was, “Yeeckh! Hell no, it’s not.” Then she went on a very nice Karen Rant in sympathy and support of you.

    Which leads me to a final bit about the support you are receiving. Dude, I don't know why people like you, we just do. It's a very complicated cosmic equation of chemistry, communication, and political preference. You just are our friend. Keep being our friend and we'll keep being yours. Cancer won't change that.


  2. First of all- I liked your original version of the blog which said that I look exactly the same as I did in high school. For that, I thank you (feel free to add that back in).

    Katy- as I've told you in personal emails, I too wish I had run into you at Starbucks, not Prentice. I don't need no stinkin' cancer sisterhood either. We both have friends and family who are supportive and love us. Hair, no hair, thin curly hair, or 8 inch afro.

    It's a crappy bump in the road. It pretty much makes me feel like everything in my life is on hold. Everything is different and all I want it for everything to be the way it was.

    I have never been a pathologic optimist, but the realist in me knows we will both get through this.

  3. Amy--here you go: For the record, you look exactly the same as in high school, with glasses. Me too, right (at least for now)? I mean how else would we recognize each other? Think about it--it's been half of our lifetimes since we last saw each other. We aged pretty well!

    Here's to aging some more. After this crap, of course.