my amazing body

My two-year cancer-versary approaches. Chemo ended the week before Thanksgiving, 2007.

There are things with my body that still aren't right. There is muscle strength and endurance that, despite training with a trainer for well over a year, I haven't yet been able to regain. (I will get there, it's just taking an awfully long time.)

But this morning, I had the opportunity again to say F-you to cancer, to chemo, to radiation. I completed my second sprint triathlon :)

My body might not be right yet, or right ever, but I am going to use it and push it and take advantage of having it every day.

Also in the exercise realm, I just started the process to become a certified personal trainer. A far-off goal I have is to start a program for cancer survivors who want to start to get their bodies back (regardless of what shape their body was in before treatment or what shape treatment left it in). It's a ways off for now.

blood test results

I went the other day to get blood tests done, one of the things to do from my doc's appointment. I was supposed to go on a specific day in my cycle, which is why I waited so long.

So I went with orders for three tests, plus my orders for my oncologist, since I'm seeing him soon enough. Lots of vials.

I got a message from the doc's office yesterday: "You are not menopausal."

Now, early menopause was a possible side effect of chemo, but if that was going to happen, it would have happened a long time ago. Given that I'm still having regular periods and so on, I had assumed I wasn't menopausal.

I'm a bit disappointed that that's all I found out from those tests. Hm.

Well, I have an ob-gyn who the doc recommended I go see, which I will do shortly. See what she has to say.

the search for a cure for chemo boobs

Time wears on, and still, my boobs rise and fall like the tides.

OK, maybe not really like tides. But they do swell and un-swell on a monthly basis. Except in June they swelled and didn't un-swell until August, and then it was only part way. And now they're swelling again. It's so weird.

So I went to a doc shortly after my previous post. She told me that everyone has a "thing" from chemo, and that's mine. Wow. That was a highly unsatisfying answer.

I made an appointment with the doc who I had initially wanted to see, but her next appointment was a month out. Again, my appointment was a month away, but I decided she had come highly recommended and that it was hopefully worth the wait.

So on Thursday, I had my appointment. She was great. I don't have any more answers than I had a month ago, but there are lots of things we're going to do to see what answers we get. She also gave me recommendations for supplements to take (vitamin E apparently can help to relieve symptoms of PMS) and called yesterday with a recommendation for an OB-gyn to go to. So I need to make an appointment with her.

It very well may end up that this is just a "thing" and there's not much to do about it — or that the treatment for it is something I'm not willing to do — but at least we're looking for some answers.

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!

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.

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...

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 clichéd 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...

hello, strangers

Just a quick hello to random passers-by. I know this blog has been linked on several cancer blog lists and that I'm getting some traffic that way.

The quick-and-dirty recap: I was diagnosed with Hodgkin's lymphoma in May, 2007. I had 6 months of ABVD chemo and a month of radiation. I was in remission by my 4th chemo treatment (though I had all 12 treatments anyway...). I'm approaching the two-year anniversary of my first negative PET scan (late July), though the doc started counting from my last chemo treatment (late November). I am healthy, feeling good, eating well, exercising regularly, loving life!

I had a PICC line which was a godsend for me and my little veins. I had a blood clot in one arm for a while.

I am very open to talking about what all went on, and have received messages from several random strangers asking for advice.

Regardless of why you're here or how long you stay, enjoy :) Fortunately, I don't have occasion to post too frequently now-a-days...

survivor's celebration

Saturday is Banner Desert's Cancer Survivor Celebration. I am always somewhat iffy about going to these things, especially as I get farther out, but hey — an afternoon to celebrate survivorship! And there will be ice cream :) Hopefully some people I know will be there. We'll see...

Otherwise, I've been in good health, working out hard, training for another triathlon in the fall ... Life is good. Living well is the best revenge!

it seems like so long ago

I was just thinking tonight, while getting my ass kicked all over the place in spin class, that two years ago, I was in the hospital waiting for the results of the biopsy to tell me what kind of cancer I had. Tomorrow is the anniversary of getting the answer, and Sunday is the anniversary of chemo starting.

It is almost surreal.

It feels like a really long time ago. So much just plain ol' living has happened since then. How fabulous is that?

I am grateful to have a healthy body, and I'm doing my part to keep it that way!