The ABC Cancer Diaries

A young, American-Born-Chinese woman living with metastatic breast cancer

Gettin’ Wiggy Wid It February 24, 2009

Filed under: Hair — wenren @ 12:11 am

I got my wig this past Saturday, and started wearing it to work. It was a really, expensive purchase — one that I am still slightly regretting, but it’s my wig now or my cover for pretending everything is a-okay. Anyhow, it doesn’t quite match my original hair because it’s much nicer than my real hair would ever be! (Much straighter, finer, and neater)

So today, interestingly, none of my colleagues made any comments about my new do, but students knew something was different. So when they asked, “Did you get a haircut?” I smiled graciously, and said “Yes.” I guess that just makes it easier.

Pictures to come of me getting wiggy.

 

Itchy and Scratchy Show, Part Deux (Or Revenge of the Rash!) February 23, 2009

Filed under: Side Effects,Treatment — wenren @ 11:57 pm

So, I was so hoping that all the pre-meds of steroids, benadryl would prevent another outbreak of the rash, but it did not. The rash this time is less intense, but still covers the same amount of surface area, and also includes burning pain. (Think really, really bad sunburn that is also very itchy.) The areas of the rash are very sensitive, and I’m slowly wondering if this is some twisted way to get me to appreciate chemo. Gosh, after this, chemo will seem like I’m on holiday!

I went for my weekly check up again, and bared my rash. This time there were no pictures taken, but the doctor decided that perhaps some adjustments may need to be made on my dosage. So they will most likely lower the dosage next time. As to reasons for my severe reaction? Nothing conclusive yet. But among the six people on this study, I am the only one getting this crazy reaction. (Another reason why I’m special — I really don’t want to be that special — at least not in this way). So the doctor was hypothesizing that maybe the reaction has to do with the fact that I’m Chinese. Wow! Maybe the medicine is racist!!!!! Or perhaps due to my genetic mutation?? I don’t know, whatever it is, I just know that my body does not like this anti-body. (It really should be called the anti-skin, or anti-Wynne because it’s not been very friendly to either one of those things.)

(Sigh….)

All I can do is just count the days until the medicine works itself out of my system, and then I’ve got to try to do a cost-benefit analysis of if it is worth going any further with this treatment because right now it’s making me pretty darn miserable.

 

Being Bald, (again) February 15, 2009

Filed under: Becoming bald,Side Effects — wenren @ 9:32 pm

So Friday night, I couldn’t wait to shave off my head. I really couldn’t take the hair falling out, and I wanted to feel in control of the hair issue. I actually didn’t feel scared about shaving it all off. I would have done it early, but I still had work, so I held out until the weekend. Afterall, this is my second time, so I know what it will be like. I guess, I feel much more daring — if people are going to stare — so be it. (Being in NYC affords some more acceptance. Afterall this is a city where you can see accomplished musicians playing on the West 4th street subway platform in full cookie monster, and pink gorilla suits!)

Shaving your head when you have a full head of hair is a complicated mess. You have to start slowly by cutting the hair short, and then use the razor several times. Anyhow, here are some pics.

Hair that fell out just from gentle tugging

Hair that fell out just from gentle tugging

I started to pull out hair to see how much would fall out, what I have in my hand is just from more gentle tugging. It doesn’t hurt one bit.

There it is!
Shortening my hair

Shortening my hair

Then—

Shaving it off...

Shaving it off...

Finally….

Still have a little stubble, but not for long.

Still have a little stubble, but not for long.

 

How to talk, how to help February 12, 2009

Filed under: Becoming bald — wenren @ 2:14 am

I found this online as I was researching ways in which people discuss their cancer in the workplace. As my hair slowly begins to fall out, I really want to shave it all off, but my hats haven’t arrived. If I had some decent hats to wear to work, I’d be bald right now because the waiting is torture.

Anyway, this is a helpful article on how to help and how to talk about cancer. I especially like this part:

What kinds of offers to assist are least helpful?

The nonspecific offer: Let me know if there’s anything that I can do. The patient is overwhelmed with decisions about health care, fears, concerns and isn’t thinking about day-to-day needs. If you really want to help, sit down, take a couple of minutes to think about what the person might need: Can I drive your kid to practice? Can I pick up your laundry? Can I take you out of lunch? Can I research something for you online? And if the answer is no today, ask again in a week. Check in.

Here’s the full text.

 

Two noteworthy articles February 11, 2009

Filed under: Articles of interest — wenren @ 12:03 am

Ever get stuck waiting for the doctor? I’m certainly no stranger to that, and have often thought about calculating all the lost, waiting time as I wait for treatment, or wait to be seen, or wait to have blood drawn, or wait to get my next appointment, or even wait to wait! The NYTimes has finally touched upon this important issue of figuring the wait time into the overall health care cost. One patient who had to wait more than an hour to see his doctor, gave his doctor a bill for his time. Ingenious! (If I did that, I think I’d have my very own stimulus package!) It would make a statement, and who’s going to get mad at the poor, cancer patient (Yup, playing the cancer card.) So to read the entire article, click here.

Another article, is really a blog post by Dana Jennings, who blogs about dealing with prostate cancer and in his most recent post blogs about a rather sensitive, but real issue: love and sex. His candid musings about how his cancer has affected his love life, are refreshing and inspiring in its honesty. And yes, he relieves some of the pressure of me having to write about those issues (for now at least) because he writes about them so accurately and well. Like him, I’ve really thought about that often quoted “in sickness and in health” line and I sure am upholding my end of the sickness part, and for sure it’s not easy for my husband to deal with all of it. But through it all, we are fortunate to understand the real meaning behind love. As Jennings writes, love is in the details.

So here’s to the details! 

 

Here we go again… February 10, 2009

Filed under: Side Effects,Uncategorized — wenren @ 11:43 pm

I was really starting to get the hang of this new dance, but just got another step to add into. So, today at work when I should have been grading (like now) I was fiddling with my hair. Then I noticed that my hair would easily fall out with an ever so gentle tug. Then, I decided to do a little experiment, I decided to randomly pull at different parts of my hair and see what would happen.

Not good. My hair all came out — more or less. Then some frantic emailing. Turns out that hair loss is a side effect. Why no one told me this, I don’t know. I can only guess that because it wasn’t an issue for the other two patients on the trial, they assumed it wouldn’t be for me. I guess that’s part of the gamble of being on a clinical trial, right? I am the human guinea pig. So basically, now that I have the rash behind me, I’ve got hairloss to deal with.

After I calmed down a bit, and placed a rather extensive online order of various hats and things, I felt better. I’m no stranger to being bald. I did it when I had breast cancer the first time around. I wasn’t happy about being bald, but I dealt with it because I knew eventually I would be able to grow my hair out. That first time around, I was also teaching, and I’m teaching now. So, I’ll probably tell my students why I’m wearing hats, and someone make light of it, and project confidence, but still doesn’t mean I’m happy about it.

Last time I was bald, I couldn’t find many hats that I liked. It’s actually hard to find hats that:

1) fit well

2) don’t overwhelm your face

3) cover your sideburn area — because that is the main part that really screams “oh my god, she has no hair!?!?!”

4) feel comfortable

And most importantly

5) look stylin’!

You can see for yourself — the TLC catalog sense of style seems to cater to people my mom’s age. No offense, I’m just not a mature women, so I still want to look like a cute, 30 something year old who lives in Brooklyn! (And if there aren’t any hats like this on the market, well damn it, I’m going to start a side business, because you should not have to be young and have cancer, and have a dearth of stylin head wear!)

Finally the last bit about dealing with being bald is control. Women who go through this want to be able to shave their head, and control when the hair falls out. You don’t want to look at the shower drain and see a mound of hair in there. So, for now I’m not washing my hair until I know for sure that I’m shaving it off, which could be soon.

So if you see a cute hat that you think will look cute on my bald head, grab it or send me a link!

On the upside, I just shaved (literally and metaphorically) 15 minutes off my morning routine!

 

The Two Week Itch February 6, 2009

Filed under: Side Effects,Treatment — wenren @ 9:48 pm

It’s now been almost two weeks since my first treatment, and I still have lingering itches. Albeit the itch has gotten alot better. This Monday, I basically went straight to the doctor’s office, and showed them my rash. They hadn’t seen anything like it before (that’s always comforting!), and immediately gave me an IV of decadron or STEROIDS! I was quite happy to have that needle stuck into me, and that calmed things down right away. Before that, they took pictures of the rash, so I might get to be in a medical journal. (Yay!)

My doctor had spoken with the company that makes the drug, and basically they have only seen this severe of a reaction in patients with melanoma, so not sure what that means. However, there is supposed to be a correlation with how effective this treatment is and getting a rash. So if I measure how bad the rash is, this treatment better be working pretty darn well!

I’ve been on steroids since this past Monday, but with varying results. Prior to this, I never realized the supreme agony and torture that itchiness can bring, but I will never underestimate the pain of it all. My itchiness has been so bad (how bad was it?), that even with sleep medication, I still woke up in the middle of the night in a stratching frenzy. So at its worst, the itching actually made me sleep deprived. Well, I made it through to the end of the work week, and the only thing I’m worrying about now is how they are going to prevent this from happening next time. My next treatment is set for the 17th (which is also our wedding anniversary), so I hope that they have some things figured out. But at least this time around, I will know that I can always make a beeline for the steroids.

Also, many, many thanks for the wonderful, nice, supportive people that came to visit or call, or sent messages (or food, or both) to help me along.  Next week, I really hope that I have a boring, uneventful week as every week so far has brought new challenges. So, here’s a cheer for boring! Yay, boring!