Sunday, July 26, 2009

two years!!

Happy two-year cancer-versary to me!

The doc counts years beginning at the end of chemo, which isn't until November, but today is the anniversary of when I got the good news that the cancer was dead — first negative PET scan. Hooray!!

Hodgkin lymphoma is most likely to recur in the first two years, so this is a big milestone!

I plan to celebrate in November, when I get the high-five from the doc. Giving thanks at Thanksgiving indeed!

Monday, July 20, 2009

a video from a long time ago

This is a little outdated, but I just learned basic video editing...

Anyway, the hospital I stayed in does an internal video newsletter once every few months. There is a segment they include called "Patient Perspective" and I was the focus patient in December 2007. This is the clip from the newsletter. Yes, I know the resolution isn't great, but the original was much too large to upload to Blogger.

Chad, my dance teacher, is a great person and a fabulous teacher. He was an amazing help to me through the entire cancer ordeal, just by being himself. (Contrary to what Patricia says in her interview, I actually danced through treatment — I didn't wait until I was done.) Click here for more info about Chad.

Saturday, July 18, 2009

it's been doctor week!

I had many doc's appointments this week.

My visit to the new GP was completely unsatisfying. She said that everyone has "a thing" after chemo, and it looks like chemo boobs are my thing. She gave me a referral to a cardiologist (who I saw yesterday). She said she could take the plantar warts out herself (appointment for that was Thursday). She recommended Kirkland (read: Costco) vitamins.

In response to a query about why my water weight from my last period hasn't gone away, she said she didn't think it was water, and asked if I've gotten happy. *sigh* She prescribed me a water pill (which, as it turns out, has sun sensitivity as a side effect, so I've not taken it). She said she didn't think it would do anything, but if I wasn't careful, it would make me pass out. Thanks.

Not a great visit.

I went Tuesday night to the i[2]y meeting about fertility issues. The nurse there suggested that a general hormone panel would be an appropriate first step to finding out what's going on. When I find my next new doctor, I will make an inquiry.

Also at that meeting, I met a Hodgkin's patient. She's almost exactly two years behind me, as far as treatments and all are concerned. She's the first person I've met who has what I had. It was kind of neat to talk to her; I hope we talk again.

Wednesday, I saw the dermatologist. Well, I saw the derm's assistant. She did a full-body check-over, said that my skin looks good, I have a little sun damage on my shoulders (not surprising - years of red shoulders will do that), watch out for changes in about 15 years to the areas where I had radiation, keep using sunscreen but no need to flip out about turning a little pink as long as I'm sunscreen-ed. That was good news and definitely lowered the sun paranoia factor by a lot.

Thursday, I had the plantar warts frozen ... but they're still there. I'll need to look up how long it should take before they disappear.

Friday I saw the cardiologist regarding my crazy high heart rate when I exercise. He said basically that I'm unusual, that HR usually only spikes in people who are sedentary. They're going to do a few tests (next week and the week after) and see what's going on. He said he's not worried and doesn't expect to find anything worrisome and that I should keep doing what I'm doing. He also said that the effects of radiation wouldn't show up for another 10-15 or more years. I'm holding out for them never to show up :)

There it is! So I'm less sun-scared, I'm holding out for answers from the cardiologist, and I'm still looking for a new good doctor. Not bad.

In the mean time, I think I'm ready to register and commit to triathlon #2...

Saturday, July 11, 2009

stupid side effects ... still

I am ranty about side effects!

I finished chemo a year and 8 months ago. I expected all of the physical chemo baggage to be gone by now. But I'm still having chemo boobs, and I'm pretty sure that some of my memory issues and struggles with speaking are related to chemo brain.

When I asked my oncologist about chemo boobs, he told me to ask my regular doctor. I made an appointment with a new doctor (my old one is no longer available, which is super-sad) and asked who in the practice would be best equipped to answer questions about chemotherapy side effects. After being on hold for a while, the receptionist came back and gave me an appointment but stressed that they might need to refer me.

Who are they going to refer me to? Is there a branch of medicine that deals with long term side effects of chemo? (If yes, why wasn't I pointed in their direction a long time ago???) If not (which I assume is the right answer), where are they going to send me? To an oncologist? I have one already.

It will be interesting.

I have a laundry list of questions for her. I want to ask about chemo boobs and chemo brain, and when they're going to flippin' GO AWAY. I had some weird breathing troubles at the end of my triathlon and again once when I was training at the gym; I'd like to know what might cause that to happen. My heart rate is pretty high when I exercise; I want to know if that's a problem (and if/how I can ever make that better). I have some plantar warts on my right foot and need a referral to a podiatrist who can make them go away. (They were removed once, about 4 years ago...) I want to know about vitamins and supplements and which ones she might recommend as being the most effective/safest.

I have a lot of questions :) I hope she has at least *some* answers.

The whole thing is ... frustrating. The oncologist's job, as far as I can tell, is to make sure I don't die of cancer. Great! He did that. I'm exceptionally grateful to him for that. But there are other things going on that are impeding my quality of life. Who deals with those?

The local chapter of i[2]y is having a meeting next week on Tuesday regarding fertility issues. I am planning to go, as chemo boobs would be tied into hormones and therefore fertility. Maybe it'll be good.

I'm realizing, through reading comments of people on Facebook, that my way of looking at my cancer seems to be different than many other young adult cancer survivors. There is a conversation going on about people who are depressed when they finish treatment. The structure of treatments is gone, the friends who are nurses and other patients are suddenly not there on a regular basis any more. I get that. but DUDE! You're ALIVE! Celebrate! But that's just me, apparently.

I wonder if this is what made the difference for me: I never thought of cancer or chemo or how my life was at the time as "the new normal." It was always just an aberration. A long, pain-in-the-ass-kinda-scary-sometimes-terrifying inconvenience. And so when it was over, I was joyful! It was like I'd been sitting at this damned light forever and it finally turned green.

Is my life "back to normal"? In most ways, yes. I am working, I am exercising, I am over-extending my schedule, I am not sleeping enough, I am doing all the things I was doing before this ordeal. Is my psyche the same? Nope. It changes you. It has to. I don't think you can come up against any life-threatening experience and not leave a changed person. It hasn't changed me in the clich├ęd way that people asked about. But if nothing else, it's always there. It's not part of my daily routine. It's not part of my regular consciousness. But it's definitely there.

Going back to the thing on Facebook. The consensus in the small sample of people is that the oncologist should be taking care of their patients' mental health needs through this process. I completely disagree. Therapists who are trained to deal with cancer patients and survivors should absolutely be made available by the oncologist (or his/her office/nurses), but I don't think it's the oncologist's job. That's not what they're trained in.

I would like to help people who need help in dealing with cancer as a diagnosis, or cancer as a part of their history, or anything in between. I'm not really sure how I best can do that. If you have suggestions, please post them.

I'll let you know what the doc says on Monday. I am also going to see a dermatologist on Wednesday. Hopefully, there will be no news on that front.

The saga continues...

Also, I just have to mention that while my hair started growing back in October '07 (before chemo ended!), and I have been getting regular hair cuts for the last year, I still occasionally get comments on having "all that hair!" Bets on when the last comment will be made? I would have lost that bet already...