The ABC Cancer Diaries

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

The Itchy and Scratchy Show January 31, 2009

Filed under: Side Effects — wenren @ 4:35 pm

I don’t know if the new treatment is working, but I’m already feeling the side effects of the rash. It’s bad enough to have a cold, but now I’m itchy around my underarms, and the areas around my nose, mouth, and forehead are red and basically feel like razor burn. I’ve tried a bunch of topical ointments (benadryl, cortisone, a & d ointment) but they never work. Actually I’ve found that ointments rarely work, if ever. I don’t know why I keep trying them! The only thing that has worked is to ice down the itchy areas to numb the nerves.

Anyhow, I’ll be going to the doctor on Monday for my weekly checkup, and hopefully they’ll have some suggestions or the rash will subside.

But for now, it’s the Itchy and Scratchy show over here!

 

Work and Cancer January 30, 2009

Filed under: Work — wenren @ 9:17 pm

Right now, dealing with the heavy load of dealing with a new treatment routine has been particularly stressful and generally been a real downer. Work feels especially stressful now since we’re heading into the final stretch of the end of the semester. The grading has been non-stop. In fact, juggling the priorities of being a teacher and being there for students is also tricky to manage. I mentioned in my last post that after my first treatment, I had to rush to work. Why? I had to give a makeup exam to a student. Being a teacher means the needs of the students take priority. I was very angry at having to go back literally as soon as the needle left my vein. No one dictated this decision, but I feel I have to be a responsible adult.

I’m beginning to realize that I really need maximum flexibility and my teaching job can only be flexible up to a point. I mean a 9 am class has to happen at 9 am, right? That means on treatment days I have to rush out of school to make an afternoon appointment. An afternoon appointment means I cannot wait around to be available to students who need extra help, or that planning for the next day gets done. An afternoon appointment also means that the chemo/treatment area is likely to be more backed up, so perhaps requiring a half hour to an hours wait, adding on to the 90 minutes required for treatment. All of sudden, it can easily be 5 pm and I’m just starting my commute home, with planning and grading to await me.

This is just a glimpse, and I don’t write it to sound complainy, but I don’t think a lot people realize how many rippling effects cancer has on the day to day basis. For now, I’ve requested to have my one non-academic class (advisory) moved to someone else’s schedule because I need more time for treatment. But it doesn’t mean that I don’t feel guilty about the fact that someone else is taking a heavier load.

On Wednesday, my department also had some very sobering talks with our school administration about budget cuts. It boils down to, we should expect more cuts, and therefore either larger classes or more classes (increased course load). Needless to say, I can’t imagine taking on more work than I already have. One could say, I was at the meeting but already had my metaphorical one-foot out the door. Because the conclusion, or realization that I’ve come to lately is that I need to be selfish. I need to take the time to take care of myself, and work on my own terms. It’s scary because people are losing their jobs left and right, and I’m basically planning on going on medical leave next school year (assuming I still have this benefit, and that it is not being renegotiated as well.)and giving up my coveted recession-proof job. But the way I’m feeling now, I don’t feel like I have another alternative.

Also, lately, there seem to be very few things that can cheer me up. In addition to all my cancer stuff, my dad is still recovering my lung surgery — and that has been particularly taxing. Without getting into the details of the family stuff, I’m in the caretaker role, and don’t have much support from my immediate family. I feel bad about not always going to see him, but I also just feel like I really need to take care of myself. (But I still feel guilty about it.)

Many people have said that it’s remarkable that I’m even working, but I feel like I need a medal of honor because lately it’s felt so hard to manage it all, and one thing that makes my job even more trying at times is that teaching is a very public job. Everyday I get up in front of a class and wear my teaching mask because that’s the professional thing to do right? Just like any other job, except it’s harder for me just to take a moment for myself. (At this point, I could get devastating news over the phone, and probably not even blink.)

I also don’t feel so attached anymore to the school community, and with yearly turnover, very few faculty really know my medical situation. (I actually started my job teaching while going through chemo because well…I needed health insurance so I had to work. I was 27 and just fresh right out of graduate school.) As far as I know, none of the students know about my situation, and I don’t know if I’d ever tell them. I guess it’s crossing a line between personal and professional that I don’t feel comfortable. Some students knew in the past, but they have graduated. Honestly, some of them might freak out, or not really understand what it means. I mean, I remember being a rather naive, uninformed adolescent — I wouldn’t want my teenage self to know that one of my teachers had a life-threatening illness.

There’s a part of me that wishes I could be open with everyone at work, but it would be complicated, to say the least. So, it’s a delicate balance, and having cancer is like having a part time job. The job isn’t ideal but sometimes the cancer ‘work’ is easy (like when I was on my recent trial and just taking pills everyday), but right now let’s just say that I’m not sure what the next project will demand.

 

First Day of New Treatment January 27, 2009

Filed under: Treatment — wenren @ 3:15 pm

Yesterday was the first day of the Chinese Lunar New Year, and the first day of the new trial medication I’m starting. The drug doesn’t have a name yet (just a series of numbers and letters), but it’s an anti-body which means it locks onto something on the cancer cell that is overexpressed, beyond that I don’t understand the nitty gritty details.

So we get to the treatment area a little before 9 AM, and I’m already anxious about getting started. I’m worried about my veins. My veins have been used alot (CT scans and MRI, Blood draws) so they are not happy. I also recently had a bad experience where I had six weeks of soreness in my arm because something happened with the vein that was used.

Anyhow, once the drug finally arrived, it was about 9:30 am, and they got the IV started. Luckily I had my very nice nurse, J who is very responsive to my concerns and gave me a nice warm pack to put on the vein to lower the chances of it bruising. Then my wonderful husband sat with me for about an hour. (He also nicely ordered lunch for me so I wouldn’t have to deal with that later.) They had to go slowly with the medication to make sure I didn’t have a reaction. What kind of reaction you might ask? Well basically your throat would close up and you feel like you’re being choked. Nice, huh?

Fortunately that didn’t happen, so it was pretty much smooth sailing, punctuated with lots of bathroom trips. (Side Note: Why they make the lip on the marble entrance of the bathroom floor so high that it’s hard to the get the pole to go over, I’ll never understand. But suffice it to say that I can go to the bathroom with pretty much only using one hand!)

I finished at 12:15 PM, and while the meds were done earlier they have to flush it out with some good ‘ole dextrose. And then I sit there to make sure I don’t have a reaction. Also, did I mention how cold it was there? The treatment area has nice big windows, which is nice for gazing outside, but bad for insulation. But I had a heater on me, so I was not too cold. Also, my ipod was very helpful during this time. J.S. Bach is very good listening for cancer treatments, FYI.

After this, I rushed into a cab and went to work. I was pretty annoyed about having getting to work, but more about that later.

I think the meds didn’t really make me react but all the while I seemed to have caught a cold. So between last night and this morning, I feel pretty tired and have congestion, and a sore throat. So I’m going to end this post here, and try to get some work done.

Will this new medicine work? I don’t know, but I don’t have my hopes up because there aren’t that many people on the trial. In fact, in NYC it’s MY TRIAL because there isn’t anyone else on it!

 

Chinese New Year-Cow Year January 25, 2009

Filed under: Chinese culture — wenren @ 5:57 pm

I just got an email about predicting your fortune in this coming Chinese New Year. And sure enough, the Year of the Ox is not good for us rabbits. In particular, according to the Chinese astrologists it’s a bad year for health.

I don’t usually pay attention to these things, but that might explain why this New Year has gotten off to a rotten start so far.

See for yourself.

I hope the astrologists are wrong.

 

Reason #198 why having metastatic breast cancer sucks January 24, 2009

Filed under: Cancer sucks big time — wenren @ 7:24 pm

I finally got the results of my scans back (CT and MRI), the short answer is that I now have cancer in my liver. The longer answer is that the cancer is very, very tiny, so I will still continue with the plan of trying the new trial medication, which is an anti-body. Basically I haven’t been on any treatment since December 19th, so it’s no surprise that things have gotten bigger, but having the cancer in my liver is still pretty upsetting.

I’ve been pretty much moping around, and lying low. I go between feeling lots of anger, frustration, and cynicism. It’s hard dealing with all of this, and feeling like now matter how much I try to take care of my body — it just won’t listen!

Adding to all of this is I’ve been feeling pretty disappointed in people in general. People want to help, but don’t know how or too busy, or are too self-involved, I don’t really know, but I also don’t really want to bother at this point either. Or maybe when I finally lose my hair when I get chemo, I’ll get more pity. But, why does it have to be that way?

I do have moments when I do count my blessings, and know that it could be much worse, but then the thought stabs at me again:

“I’m 33 years old, soon to be 34 and I have GOD DAMN METASTATIC BREAST CANCER! AND THAT AIN’T RIGHT!!”

It just isn’t right, but who said life was fair anyway.

 

Gotta keep on dancing January 19, 2009

Filed under: Dealing with cancer emotions — wenren @ 8:53 pm

When dealing with uncertainty, you search alot. You search for answers even though there aren’t any. It’s frustrating.

I just saw a posting on a bulletin board for people dealing with metastatic breast cancer, and I found a link to an article that led me to a quote:

She said no one defeats cancer; cancer is a dance partner you don’t want and don’t like, but you have to dance, and either you die or the cancer fades back into the darkness at the other end of the ballroom. I never forgot what she said, and think she is right, and the words we use about cancers and wars matter more than we know.

–Taken from Brian Doyle, “On Not ‘Beating’ Cancer,” from Oregonlive.com

Cancer is a dance partner that no one wants! Often people speak of “battling” cancer. No one I know has ever wielded an axe to cancer. (If only it was so easy!) No it’s a complicated dance that keeps changing pace, and I never seem to get the steps!
Usually just as I learn the steps of one treatment, it’s time to learn switch to another! Let’s just say that I finally learned how to waltz, and now they expect me to rhumba?!?!?!

No wonder, I’m confused and frustrated!

And the other part of the quote which has some key points for me:

Maybe if we celebrate grace under duress rather than the illusion of total victory we will be less surprised and more prepared when illness and evil lurch into our lives, as they always will; and maybe we will be a braver and better people if we know we cannot obliterate such things, but only wield oceans of humor and patience and creativity against them.

I couldn’t have phrased it better. So here’s to learning how to rhumba, samba, foxtrot,  mambo, hustle, do the macarena, electric slide, lambada, forro, tango, cha-cha, salsa, and jitter bug!

 

Yet another human guinea pig January 16, 2009

Filed under: Treatment — wenren @ 10:55 pm

It’s pretty much official that I’m going to try another clinical trial for my next treatment. I don’t know much about it, but it is an anti-body and it is sponsored by pharmaceutical company Curagen. (If you really want the nitty-gritty details, click here).The drug has been tested mostly on people with melanoma, and I hope it will do good things for me. The trial is a phase I trial which means that previously they (researchers) have tested the drug only on monkeys and rats. I guess we all are animals in the end anyway, so why not?(If I start having an extra hankering of bananas I’ll know something’s up.)

I should not be so flippant, mainly I’m going for this because the side effects shouldn’t be as bad as chemo, so why not? Worse case scenario is that it doesn’t work and I go onto my chemo options. What many people often don’t realize is that it’s not always the cancer that causes so much pain and discomfort, it’s everything else used to treat cancer. Because chemo basically interferes with cell division in some way, so that affects your blood counts, your skin, your hair (sometimes), — anything that has cells in it!

So I’ve just started the set up for the trial. I have to get some bloodwork, EKG and an eye exam (I guess some people have some side effects that affect their eyesight.) I suppose I’m pretty myopic anyway, so can’t be any worse, can it?? Knowing what has happened recently, I suppose I shouldn’t test fate!

So next up, (hopefully) I’ll get my results of my tests next week. One more test to go on Sunday.