Friday, July 26, 2013


Today is the three-months-after-last-radiation-treatment celebration day! Yee haw! It feels so far away and yet it feels like time is crawling. Yes, I still have some problems. But they are minor. THEY'RE MINOR. And of course they also feel like they run my life. Big, deep sigh.

Edema has come. Edema is the pooling (swelling?) of fluids (liquid? water?). For me, it's mostly a left leg thing. The surgeon warned me that this might be an issue after he took out all those lymph nodes. He was right. It's funny that it's primarily just one leg, but maybe it's because he took one more lymph node out on that side. One too many? Perhaps. In any case, it doesn't really bother me. But I'm aware of it most of the time.

If I go for walks and keep moving, the swelling is not so bad. But my job is a sit-at-computer job, and sitting is not so good. Once a week (or so) I have physical therapy for one hour. Lymph drainage (Lymphdrainage, in German) is a targeted kind of massage that encourages your lymph system to keep those fluids moving. It feels nice and I think it helps. We've been house sitting in Z├╝rich, Switzerland, but my insurance is in Germany, so I take a train over the border for my lymphdrainage.

rainbow over the Schaffhausen tower

I also wear compression stockings (Kompressionsstr├╝mpfe), which also seem to help. However, when I wear them the fluid pools elsewhere and I don't like it any better. The physical therapist says perhaps what I need are Kompressionsstrumfhosen, or compression tights. She asked if I noticed it in my butt at all and I told her that no, I do not notice whether my butt is swollen or not. Surprise! But I don't think it is. I told her my pants fit the same as usual.

Did I mention that it's in the low 30s C (90s F) every day right now? Yeah, tights sound like a great idea and all but no. Maybe once it cools off? I asked my physical therapist how long it might take for things to return to normal, like, what is typical? She said I'd probably do 10 sessions at a time and then take a month or two off, then do 10 sessions again. And it's usually a year or two before the body compensates more accurately for the change. Something to look forward to.

The edema doesn't bother me most of the time, but it does start to bother me if I don't think about it all the time and take lots of breaks to get up and walk around the apartment. You see how that works?

Then I have throat tightness. This is attributed to and is a common symptom of acid reflux. I have no other acid reflux symptoms, no heartburn. The tightness comes and goes, so it's not terrible. But it's a sign that something is not right. For this, I have Pantoprazol. It's a proton pump inhibitor (PPI) commonly prescribed for people with chronic acid reflux or GERD (gastroesophageal reflux disease, something I happen to know a lot about, unfortunately). I don't think Pantoprazol is really working for me because I still get the throat tightness, even though I've been taking this stuff for two months or so. My doctor said to just stick it out. The other doctor said to only wait 3 or 4 weeks and then consider antibiotics. Eff that, is what I said.

I go back to Berlin in early September for the 3 month (since my last) biopsy. The last biopsy "looked great" according to the surgeon, so that's nice.

The compression stockings are actually pretty rad. I wore them hiking in the Alps. Wait, what!? Yeah, I haven't been holding back actually. Our very good friends took us on a little B&B/spa/hiking adventure to Vals. It was so beautiful.

Alpine goats and me
the Alpine hiking team. thanks guys.
got pretty steep at times

I'm pretty proud of that adventure, so I'm in all the pictures posted here. I did that just a couple months after finishing cancer treatment. To think that only three months ago I could hardly do anything but lie around in bed all day long. To those of you struggling through treatment right now, this is for you: it gets better.

We had three days of hiking in the Alps, with a 6 hour hike on the final day. Pretty burly. Leading up to that my sister and I did a four day bicycle tour, doing about 30kms per day.

Bottom line: I'm getting much better. There are days when I want to cry because I feel like my body is broken and doing things it never used to do. I'm learning my body all over again and it's hard. We used to get along so well, my body and I. Now... problems that I can't seem to fix by just willing them to get better.

And I have a love-hate relationship with all the cute shops selling baby and children's clothing. Walked by a maternity wear shop and wanted to cry about it. I don't know if we'll be able to have kids at all, and even considering kids at this point is crazy. The future feels incredibly uncertain except for the very near future; until 6 months after the last chemo treatment, getting pregnant would be a bad idea. So it makes no sense to think about any of it, really. It's a short loop from "I want babies" to "I might not be able to have babies" to "I certainly can't do anything about it for a few more months" to "why am I even thinking about this right now?"

I continue to be overwhelmingly grateful to Joshua for being... well, himself. He recently created a Mac application for tracking time zones. It's a simple idea and perfect execution, so if you like the idea of having more than one clock at the top of your screen, please check it out. We'd both really appreciate it.

Thanks for continuing to check-in here, too. It's helping.


  1. You left a couple of comments on our blog( you--so i thought I'd check you out, then I read your post about cancer on your bicycle blog and ended up over here. Jody, my wife is riding in the PanMass Challenge this weekend, part of a team of 12, all connected through her restaurants, trying to raise $100K for research. Isn't it strange--we almost never talk about cancer unless we have to, and yet once you do start talking about it, EVERYONE has either had it, or loved someone who has. My wife's dad. Both of our sisters. (I have a sister who wears a compression sleeve, the result of her lymph gland removal with her breast cancer surgery.) You've done a remarkable job of describing your situation without minimizing its toll on your life, or coming off a victim. Life can be so hard some times. I wish you well on your recovery. If you lived nearby I'd drop off a batch of spring rolls. Good luck. Ken

    1. Thank you for your kind words, Ken. I saw your post through (well, their facebook page). We had just made fresh spring rolls the night before and we love them - but hadn't thought to make them easy to eat on the go. I was wondering what to do about the sauce! Anyway, great stuff. And yes, it does seem like cancer is everywhere now...

  2. Hey mony.. Im glad you are recovering and appreciate you sharing your life with me and all your fans on the world wide web.