Saturday, June 19, 2010

Day 45

Last night ended one of the more interesting 36 hour periods I've ever spent in my life. After work on Thursday, I met up with my mom and we took a long and slow road out to the western suburbs to a specialty wig shop/boutique for cancer patients. We got there just a few minutes before my free consultation was to begin, and there wasn't much to see in the store. Why was I there, you ask? Well, I figured I should at least look into getting a wig. I've heard from a lot of young women with kids who say that the worst part of being bald during chemo, or one of them anyway, is that you go out with your family and get all these looks of pity from everyone. I'm already familiar with the pity looks and I still have all my hair. So while I assume my family, friends and co-workers can deal with seeing me bald or at least with a scarf on, there is something to be said for anonymity if you're just trying to go to the grocery store.

I sat in the shop, listening to one of the workers argue with a woman who wanted to walk out of there that day with a wig since her hair was thinning right then. This went on for a long time and it seemed a little contentious given the circumstances. While we were waiting I mentioned to my mom that I didn't want a human hair wig. Besides the exorbitant expense, human hair is exactly that--you have to wash it and take care of it like real hair. No thanks. The owner of the shop must have overheard me, because she came over and started to try and do a hard sell on a human hair wig. They last so much longer! You'll be wearing it for a year! (Hell no I won't. Just like every single other woman with breast cancer I've ever met, as soon as I get that men's buzz cut look going, the wigs and scarves are off). You can curl it! And style it! And blow dry it! (Um, I don't do any of those things with my own hair. In fact, I don't even know how). I kind of wanted to leave at that point, and they were running behind, and it was hot and I was fussy. I mean, what's up with the extreme sales pitch on a woman with cancer? But then my "stylist" came out to get me.

I liked her from the start. She gave me that once over that all hair stylists do when they meet you for the first time. No pity, no asking how old I am, or lamenting my pretty hair. She whispered to me that if I didn't want a human hair wig, I shouldn't get one, no matter what her boss said. Synthetic is fine--that's what she used.

Ah, now I understood the normal interaction. She's in the club. I told her if I got a wig I thought I wanted something short, with bangs, to hide my eyebrows after they fall out. I told her I don't do hair, don't style it, that I've always been a redhead so I thought I wanted a different color. She said ok, we'll see, but you know what? You're a redhead. I'm Italian, and I was happy to get fine sleek hair in my wig instead of my coarse natural hair, but I would've looked ridiculous with light hair. OK, but I don't want a red wig, I don't think. She brought out a bunch of wigs and my foray into looking like someone other than me began.

The first two were long. One was a brown Rachel from friends looking thing. Surprisingly, I didn't look like an idiot, but I didn't look too good either. Then some Beyonce-style blonde/brown curls came out and we all fell out laughing at that one. After that two short, layered, Meg-Ryan type of brown wigs. I was really surprised. I looked like a normal person. Not like me necessarily, but dark brown hair looked good on me with my eyes. I thought one of those could work. Then she gave me a Molly Ringwald style (present day Molly--long, straight with bangs) to see how I liked the red.

Well, I liked it. She was right. I'm a redhead. I look the most normal, the most like myself, with red hair. After all, this is not a wig for a costume party. It's a wig that's intended to help you blend into the world while you're poisoning yourself with chemo. It helps to look like a semblance of yourself. The hair color was good too. It's not natural and it's not mine, but if you didn't know I had cancer, or if you hadn't seen me recently, you might think I'd straightened my hair and put highlights in or something. I tried on some more red wigs, short, chin length, all straight--no curls. I only cut my hair three or four times a year, and those are the only times I ever see it straight, so I figured I'd at least go for a different style than my regular hair, which I will still sadly miss. My stylist and my mom kept raving about how cute all the wigs were, and it was hard to decide. I said I needed votes, because I would really rather keep my own hair, and all these wigs looked poofy on me because I have so much hair it was hard to contain inside the wig cap. But I found a few styles that made me look like me, if I were the type of person who "did" her hair.

But forget the wigs. I'll surprise you with a bald pic followed by a wig pic at some point. I really want to talk about my stylist. She was maybe one of the best people I've spoken to about cancer since I've received my diagnosis. She's older than me, 47 (with grandkids!) and she was diagnosed with triple negative breast cancer 8 years ago. She did chemo, including AC and taxotere, she had a lumpectomy and had to go back for a re-excision. We had so much in common. But more than anything, I loved her attitude, which was very open about cancer without it seeming at all out of place, depressing, or fake. Not that other cancer survivors I've spoken to have been any of those things, because actually everyone I've talked to has been great, but something about this woman was just really neat. She kept saying "yeah, this is awful," but she was joking with me too, saying she told the surgeon she should have just "taken a third" of the breast instead of going back in for the re-excision. She told me the wigs looked cute on me because I was cute. She said that when her hair grew in, she looked like her dad. That after 8 years, her doctor tells her "oh, you're good," since she's triple negative and once you make it through the first few years your chances of recurrence are much lower. She was just really easy to talk to, and it was more like going to get my hair done than going to do some cancer-related thing. Maybe I'm more of a beautyshop gossip person than a support group person. Who knows? The strange thing is, it was actually kind

Which I really needed, more than I even knew. When I got home, within about an hour, Gabe was taking Augie to the emergency room with a 104 fever and strange breathing. He had to go into the baby-torture chest xray machine (have you seen those? They stick the baby in a tube with their arms sticking up...completely pathetic), and I was at home while Lenny slept, freaking out, unable to believe I couldn't be there with my baby. If Lenny had to go to the ER as a baby, which she did a few times, of course we both went. This was my first time as a mom not being able to be there for my kid. But we couldn't really bring Lenny along, and it's still hard for me to carry Augie for long periods of time. The kid weighs 22 pounds (he's 1. his sister is 4 and weighs, wait for it...29 pounds) so holding him for three hours in between surgeries didn't seem like a good idea. He came home in one piece--who knows what was wrong. Sick, dehydrated, his heart working too fast due to the fever. What a nightmare.

The fun continued in the morning, when I went in for my mammogram by myself since Gabe needed to be home with the baby. I thought it would be quick, even though I was really nervous about finding out if there was anything left that would preclude me from doing a re-excision. I'm actually too tired to get into the whole drama (our power was out for a while, so I started this some time ago and my train of thought is a little lost), but I think the whole city of Chicago was at Northwestern for a mammogram. I had a 9:30 appointment and I was there for over three hours. I had to go back three separate times for more pictures with three separate technicians. By the end, my stitches were bleeding. I made a few friends in the waiting room--, several other cancer patients were waiting for one thing or another (one was going for a re-excision, like me, and another needed a wire placed for a mastectomy, which really boggles my mind. You're cutting it off! What's up with the wire?). We were all really pissed, scared, and incredulous at the situation. I thought it couldn't be good if they kept calling me back. Finally, I was given a piece of paper and told I was done.

Excuse me? I was told I would be leaving there secure in the knowledge of whether or not I could go ahead with my re-excision next week. I started getting pissed. Many of you know what I can be like under normal circumstances, so just add cancer and shake and you can imagine. I said, I need to tell my babysitters what I'm doing so I can come into surgery, I need to know if there's something else there because if there is I'm not doing the damn excision, I'm going to start chemo and then do it, or do a mastectomy. Again, the nurse seemed surprised by my vehemence. What are we, sheep? You think I can handle breast cancer but I can't tell you what I need you to do? Please. So as I insisted, the radiologist saw me, and started telling me about some calcification (a single point calc she called it) that was far from the tumor site, but they could watch it. Hold the phone. My margin area is clear? Yes, there is nothing else suspicious there. You don't need a wire. But there's something else on the other side of the breast? Well, it's probably nothing, just a single point.

You could say that to a normal person. A woman with cancer doesn't give a shit if it's a single point. If there's something else in there, forget it, I'm done. She told me I could do some weird biopsy where I lie face down for 2 hours and they suction the "calc." I made it clear that if I didn't know for sure that that was nothing, the re-excision wouldn't happen. So get me a biopsy appointment on Monday or we have a problem. I know I was glaring and it's possible there was steam coming out of my ears. She looked at me with a mix of confusion, and I think, fear--and told me to wait.

As you all know, I've gotten good at that. At least at that point they had let me remove the bloody gauze from my chest and get dressed. Then I was called into her office and we actually looked at my pictures on the computer. This doesn't happen too often. She was excited to show me that my "calc" was "dermal" so it was in the skin and absolutely benign and no big deal. So why did you make me lose my frigging mind? Was this training day or what? Disgusted, but also happy with the news, I caught a cab and went to work.

Now just as an aside, I suddenly have a new boss, as they decided to do a spur of the moment re-org a week ago. Normally I would be very upset about this, and I was worried that my boss was being very supportive of my situation, but now I would be dealing with someone new. I hate the idea of change right now as I need some continuity, but I also really couldn't worry about it. I talked to my new boss and everything seems cool. I was able to tell her that I wanted new opportunities, was excited to work with her, but that I also really had no idea at all what the next 6 months or more would be like. She understood. In any other time, this situation would have caused some stress for me. Instead, I was relieved to be at work on Friday afternoon, unable to concentrate, with the knowledge that two bosses--my old one and my new one--were ok with my lack of productivity for the day.

One of the only things I accomplished was that I talked to a fertility specialist, who told me the long process of egg freezing that was available to me. Oh, to be a man! Even a man with cancer! A few minutes with a magazine and you're done, future fertility intact. No daily shots in your stomach, surgery, hormones, ugh. The specialist told me that if I had children she wouldn't recommend it, because the type of chemo I'm doing gives me a less than 20% chance of permanent loss of ovarian function. I said, both of them? She was talking about the ACT. I guess the TC has a 30-70% chance. You think when I asked if there were side effect differences they could have told me that? Seems significant for a 34 year old, even if I don't want more kids. There's the whole menopause issue after all--must be small potatoes in the oncologist's eyes. Since Gabe and I didn't think we wanted more kids, and since I know in my hear that pregnancy would be too emotional for me after cancer--too many hormonal changes, too much weight gain stopping me from feeling lumps in my breasts, too much sadness associated with nursing considering how I found my cancer--this talk with the fertility person was almost irrelevant.

Except that it wasn't, because it cemented the ACT over TC decision in my mind. So after this conversation I walked to the train in the rain. I got on, and within two minutes of me finding a seat--no joke--the sky turned green and the train started to shake in the station. Trees were being broken in half, folks were talking about how their office buildings were evacuated, and we all started calling home to say the train is moving while standing still and there's no way we will be leaving anytime soon because this is looking like some tornado type shit right about now.

And then the train departed, on time.

I thought, you've got to be kidding. What-- I got through this cancer diagnosis, only to die in some Helen Hunt scenario, except that instead of cows flying through the air, it was going to be our commuter train? Everyone was either silent or talking too fast. Did the train really just leave the station in that weather? Tornado-force winds up to 70 mph? Is this really happening?

How we got home I don't know. It was scary as hell. And very stupid of Metra. The bad part of the storm was over in 15 minutes. It wrecked havoc all over Chicago. They probably could've waited. But after calling Gabe and telling him how scary it was, I hung up and actually started to laugh. Life is just absurd. I felt like I was being punkd. Where's Ashton Kutcher?

Speaking of random pop culture references, I took Lenny to see Toy Story 3 in 3D this morning. I loved the movie, though it was very dark in parts. Lenny loved it too--she brought her Slinky Dog along. I couldn't believe Totoro had a guest appearance. I also couldn't believe how much I sobbed near the end. Me! I only cry in very inappropriate movie settings, like in Armageddon when Paris or whatever is obliterated and I was sad about all the millions of dead people I wasn't really supposed to think about. I'm crying that Andy is leaving for college, and his mom is sad. It's touching, sure. But why am I crying? Because I really want to see my kids go to college. I want to raise them and let them go. I don't want to miss it. I want to know what they look like and what they like to do. I want to lose this guilty feeling where I want time to speed up so I can be through this cancer year, because I want to live long enough to wish time would slow down and I could have more time with them.

And this might leave me tomorrow, but for the rest of the day I felt this strange sad peace with my cancer. I'm going to do this re-excision. I'm going to set up chemo whether my next margins are clear or not. If my margins are clear, great--I will finish chemo and start radiation. If not, I will probably do a mastectomy and reconstruction after chemo. I'm not doing a third lumpectomy. It's good to have decisions made, even though I will be unsure of the state of my cancer and my margins for probably another week and a half. I have to recover from another surgery, I have to go through chemo, I will have scary times due to germs brought home by my kids, I will have to figure out how the hell to take care of my kids, and I will not know until it's over if I have permanent side effects and I will never know for sure if the chemo has worked.

But I have to do it, don't I? There's no going back. There's only so much in the triple negative arsenal. I need to make my peace with chemo in order to make my kids' graduations. It's not fair, and it's awful. But as a dear, older friend from the neighborhood told me this morning, after having just lost her husband of over 50 years yesterday, your kids are fine. But they won't be if you're not there. You're the most important person in your house right now. She also told me what I am going through is worse than what she is going through (she is also a breast cancer survivor). Now I know 150% that that is completely, utterly, impossible. What I'm going through isn't a death sentence. Death is final, and she is dealing with death, and so much loss, and a complete upheaval in her life. I am dealing with loss, and illness, and its real, but it isn't my forever-- at least not yet.


  1. Ok - so no pressure here, but LOTS of us won't be ok in that implied scenario you're dancing around. So look really cute in those two wigs you picked out (and you will, I can attest to that) and plan that trip. I'm beginning to think Disneyland is the best bet...where else can you find princesses and mice in dresses and dreams that really do come true?

  2. Sorry to hear about Augie! I hope he's better today...

    Anyway, this is a COMPLETELY NAIVE question, but I'm going to ask it anyway... maybe you'll laugh... About the wigs... Can't you just have the stylist shave your head the day you start chemo and have them make a wig out of your own real hair? I'm not saying you'd "want" to do that, but it seems logical to me.

    Crazy about the tornado... maybe just nature's way of helping you get your mind off of things.

    Love you, Katy!

  3. Yeah Tony I looked into that. To get your own hair made into a wig you have to spend a ton of money, get hair donations, send it all to China and wait 3 months! There is a place in Florida I can send my hair to when I cut it all off. They will not make a wig, but a wig-alternative so I can wear my own hats and scarves with my own hair. I'll probably do that too since it only takes a week or two to do. Happy Father's day, by the way!

  4. I think the take home message of this blog is that you've made some decisions about treatment plans. People outside this situation and outside the medical field may not absorb how important that is. It's the hardest part and the most important part. You have a plan. That's huge. Good for you.

  5. Katy, I just found the link to this post on Google. I was just diagnosed this week. Where is this place in the western suburbs that did such a great job with your wig? I am anxious to minimize the number of people who know...I start chemo in two weeks.

    1. oh so sorry to hear that! The beginning is such a rough time. I think the name of the place I went to was Naturally Yours; that location might not still be there, but there is one in Willowbrook. Just so you know, I sent my hair to a place called Hip Hats in Florida so I could "wear" it, but in the end, I never wore wigs or head coverings and was just openly bald. I felt very different about it after my head was actually shaved--but I was glad to have the wigs, because I could not have predicted feeling that way. I hope all goes well with you and your treatment!

  6. Katie - I also found your blog by googling - 'I hate breast cancer'. Found a lump the end of January, had mammogram, ultrasound and biopsy the next day, then had bilateral mastectomy February 22 and chemo starts March 22. Alot to digest in such a short amount of time. I'm 58 years old with Stage II grade 3 BC - had a 3.5 cm tumor and one out of 12 lymph nodes positive. Oncologist plans to use ACT chemo also but if I do the clinical trial I may be randomly chosen to be given just the CT. I'm glad I found your blog as it is helpful for me being a planner to know sort of what to expect even if I have a different kind of BC than you. I really like the detailed way that you write which gives me a better understanding of the whole process than what you get from the doctors even though they are knowledgable. So far it seems that what you have experienced to this point that I'm at is about the same. I will continue to read the rest of your story. Thanks, Linda

    1. Hi Linda! I just now saw this comment. I'm so glad this blog has been at least somewhat helpful for you. Sometimes it's very strange to look back on it and remember what each step was like; there is a lot to process! Take care of yourself.