At more than two months post-chemo, it’s time to share some hair pictures! In these, you may also notice that my eyebrows (and lashes) are nearly completely grown in. Exciting!
HAIR!
hair loss
Survival of the Nipplest
I just got home from a follow-up appointment with my plastic surgeon. Last Tuesday, she grafted my left nipple into place and today, after dramatically removing the dressings that have been on the whole week, she said, “It’s pink!” and that she was optimistic that the graft would take, though she can’t say for certain just yet that it will. I am feeling good – after all the devastation after my mastectomy with my skin that wasn’t surviving, it’s nice to have some hope that my chest will have a beautiful future. Also, my port is OUT and the scar from its insertion has been cleaned up and looks fantastic. Low-cut shirts, here I come!
Coincidentally, I also received a note from my insurance company today that they will not cover the hyperbaric oxygen treatments I received back when we 
were trying to save that dying skin. I guess it’s true what they say, just in reverse: when one door opens, another door closes.
In other, extremely exciting news, MY HAIR IS GROWING BACK! You can see a bit of fuzz in this picture, but this was about two weeks ago and now there is quite a bit more hair on my head. I have a defined hairline, and it’s getting darker and longer almost daily (at least that’s what everyone tells me). Eyebrows are pretty much kaput, though, but I’ll take what I can get. More pictures will be forthcoming (as soon as I can locate the USB cord for my camera).
Finally, I wanted to share yet another article inspired by the movie 50/50 – have you seen it yet? It’s about comedy and cancer, and while it jumps around quite a bit (I had a hard time following it, but that might be because I had one of my fave TV shows Hoarders on in the background) it’s a worthwhile read.
New-ropathy
I guess I thought I’d be the woman who doesn’t get all the common chemo side effects. Everyone told me I would “do so well” with chemo – I’m young, in good shape, have a positive attitude, and so on and so forth. Well I’ve learned that being young, in good shape, and so on and so forth does not preclude you from feeling common chemo side effects, no matter what anybody tells you.
My current battle is with peripheral neuropathy, which has manifested in me as a strange, pins-and-needles-like sensation in my fingertips and, less prominently, the soles of my feet. It’s not painful, just annoying because I feel it everytime I type, hold a pen, or do anything else that normal people do several times a day with their fingers. Everything I read says it’s reversible, but I also worry sometimes that it won’t ever go away. It’s been pretty constant since my second Taxol.
And while we’re counting treatments, I want to proclaim that I have JUST ONE LEFT! September 1st marks my last infusion and I am so, so, so ready to be there. I’ve heard from a lot of women that reaching the end of treatment is sometimes hard, and I can understand why that would be – you’ve spent several months being monitored closely by a medical team, you’ve endured countless side effects and emotions, you’ve received well-wishes and extra love and care from family and friends and then… bam! You’re not really a cancer patient anymore. You’re a survivor… supposedly… until you get a recurrence… but that’s a whole other story.
While I see the sadness that can come along with ending treatment, I also think I’ll be ecstatic. First and foremost, my hair will start growing back! I’ll have normal work hours, be around most weekends to hang out with friends, avoid being pricked and prodded every week, and I’ll be able to schedule my final reconstruction surgeries and emerge in 2012 with new boobies and a new outlook on life. So close…
Oh hey, pretty pictures.
After my diagnosis GWU hooked me up with a “cancer buddy”, a woman who had a similar diagnosis and treatment at the cancer center and was willing to share her experience with me. My buddy, Rina, is wonderful and she is also a great photographer, so I asked her to take some glamour shots of me with no hair. I figured it would make me feel better about being bald, and it would be important to document my experience so I can look back in the future. Rina thought so, too, and may even turn it into a project where she profiles women’s cancer experiences through photographs.
Here are a few of the shots that I particularly love – photo credit goes to Rina. In some of them I’m wearing wigs; we had a lot of fun playing with looks. And PS: I made these files pretty small so they’d upload quickly. Don’t blame Rina for the graininess – the originals are crisp and lifelike!
She’s Out!
Well folks… I did it today. I left the apartment and walked to work sans headcovering.It was the first time I’ve ever walked the streets of DC bald, and it’s basically the first time I’ve been in public bald for a full day (there was the time I went to the Dr.’s office in NJ bald, but that involved getting out of the car and walking through the parking lot). I consider this a BIG milestone!
It felt great and I didn’t get as much attention as I thought I would. Maybe I was being selfish – although I think it was more self-conscious – in thinking that people would literally be crashing their cars and bikes straining their necks to see the crazy bald girl parading down the street. But no one really even did a double take. Shocking, but great to know! I’ll have to do this more often.
Insomnia and other Side Effects
It’s an off-chemo week and yet I am still unable to sleep tonight, 2am on a Saturday. Sigh. Could be that I took two Compazine today – let me explain.
I have a mild case of oral thrush – basically a mouth yeast infection. Yeah, yeah, it sounds totally gross but it’s a common occurrence for people on chemo and mine has just meant my mouth feels slimy and I have some white stuff on my tongue. My doctor prescribed these big white tablets that I have to dissolve in my mouth for 15-30 minutes, and while they’ve been working, they made me a bit nauseous. At first, I took Ativan to help with the nausea – though my doctor prescribed it initially for my anxiety, it also helps nausea. Then I trolled the interwebs and learned all about Ativan addiction and got scared and switched to Compazine instead, a drug I was originally prescribed for nausea in the days after my chemo.
Every drug has a side effect, I guess (in fact, one of Compazine’s side effects as listed on the website I linked to is “fine, worm-like tongue movements… whatever that means). Hard to accept because up until now in my life the only drugs I’d ever really taken were Tylenol and here and there an antibiotic.
I’m also coming to terms with the fact that “bald from chemo” in my case does not mean completely, Samuel L. Jackson style bald. It means bald with delicate, dark peach fuzz all over my head. This is almost harder than just being completely bald, because unless I keep these rogue hairs always trimmed down, I can’t make it look like I meant to do this to my head. Did others have this kind of baldness?
My confidence is building everyday and I did have fun wearing a wig to work on Friday, but it might be a couple days before I post a picture here.
26 years on Earth
I’ve prided myself for being pretty strong throughout this whole experience. I only cried a couple of times, mostly back when I got my diagnosis. But these past two days have been extremely hard and I can’t say that I feel very strong at this moment.
I didn’t think losing my hair would be this difficult. But as I sat in the bathtub this afternoon and watched what little was left of my once long, brown, curly locks swirl toward the drain I just broke down. Getting out of the bathtub, I reached for a hair tie to put around my wrist and then put it back, feeling stupid. I have no hair to tie. I just have a patchy head with tufts of hair that are refusing to quit until the very last second. I wish they would go away so I could just be completely bald and not look like what I imagined the velveteen rabbit looked like sitting in a trash heap waiting to be burned.
I’ve been out in public but I don’t know how to act. All day yesterday and today I had a lump in my throat that literally made it hard to breathe. I thought my throat was swelling – allergies, maybe – but I think instead it’s anxiety. I don’t know how to be bald in public. What if someone pulls off my scarf? What if little kids laugh at me and ask their mommies why that woman is bald? What if people pity me? Make fun of me? Laugh at me? Look away from me, embarrassed to stare?
Today is my actual birthday and I want to celebrate and feel good about another year under my belt, but I’m terrified to leave my apartment. I know I should walk with my head up and not care what people think. It’s all about confidence and inner strength. But it’s easier said than done and I can only hope that, in the days to come, I find the strength I need to get through the summer like this.
It begins…
I’ve just been waiting for my hair to start falling out in clumps. Well, no clumps yet but here’s the result of a few light tugs on my scalp. Sigh.
Luckily, my step-mom’s coworker made me a kick-ass head covering that I am totally excited to wear to the Phils game that I’m going to on Sunday!
Allergic reaction
On Tuesday I broke out in tiny red bumps on my chest. Didn’t think much of it – it was nearly 100 degrees in DC and I had worn a high-necked shirt, so I figured it was heat rash. The next day, I got the same bumps on my back and they were itchy – again, it was around 100 so I figured it was heat rash.
On Thursday I saw my oncology nurse for a week-after-chemo-infusion blood test and follow up. I showed her the rash and she didn’t think much of it. I also discussed some of the other effects of the chemo, just to make sure they were normal: my foggy head, insomnia, and poop problems (excuse my bluntness). She didn’t seem concerned about anything, and I went home feeling really great about everything. I can do chemo and not feel absolutely terrible? Hooray!
I had a wonderful day Thursday and Friday – the weather calmed down and it was low 80’s with no humidity. I finally felt like myself again after some nights of sleep and I could work full days and be normal. I made lots of healthy meals with the bf. I ate a lot of fruit. Life was good.
Then on Saturday I had a bit of a hypochondria episode because I started feeling weird. The bf and I took a long walk in the morning through the National Zoo, and when we got home I had some pain in my lower back that started progressing to be really intense and throbbing. I also felt shooting pains in my upper thighs when I stood up and walked. I thought maybe a result of the long walk of the morning and my sad lack of exercise recently, but it was really a lot worse than I could attribute to that.
I also felt flush; I took my temp and it was 99.2. Slightly too high for comfort especially when I’m worried about every little chance of infection. On top of the hives and poop problems and a pounding headache that was coming on, it all felt too much for me and I considered going to the emergency room. Instead, I called the on-call oncology doc to discuss. “Am I crazy? Or do these symptoms mean something?” I thought perhaps I had a kidney infection.
He was very nice and explained that he would be worried if I had a high-grade fever and chills, but since I didn’t, he ruled out kidney infection. He also said it could possibly be side effects of Neulasta, the shot I had the day after chemo to keep my white blood cell (WBC) counts high. Really? It had been a week since the shot. He said some people just have a delayed reaction, and it continues working in your system for 2-3 weeks. He said take a couple Tylenol and some antihistamines for the hives – if things get better, I’m fine. If they get worse and I get a higher fever and chills, come in.
Popped some Tylenol and Benadryl and things did get better. My temp went down to 98.4, the pain subsided for the most part, and so did my hypochondria. It’s amazing how a calm doctor and a couple pills can help your nerves. An hour before I felt like I had a life-threatening infection and I needed a bus to the hospital. After, I was ready to head to a friend’s house for pizza and movies.
I guess I can’t blame myself for the hypochondria. I’m a freaking cancer patient on some heavy drugs and my immune system is slightly compromised. I’m allowed to freak out when things happen because if I don’t report something and it ends up being serious, I may not recover. But I guess I should also realize that I am on a lot of drugs I’ve never been on before, and they all have side effects, many of which are completely normal and non-life-threatening.
It is kind of frustrating, however, to be on so many drugs and have a reaction like itchy red bumps and not know which drug is causing them. Is it Compazine? Neulasta? Dexa? Who the heck knows! As long as my throat doesn’t start closing up, I’ll live with it. Pass the Benadryl.
Wearing my BRCA genes 
