This week I have three different cancer-related medical appointments in three days. Tomorrow I have my radiation oncology mapping appointment, and Thursday I get to go under general anesthesia to have my port removed (yahoo!) – I will try to take recovery room selfies as always.
Today’s appointment was my first physical therapy appointment to see the lymphedema specialist. If you’ll recall, back in October, I got a tiny bruise on my right wrist that caused my hand to swell up. In November, I visited my primary care doc (Dr. Hugs) who decided it was not lymphedema “because my whole arm would be swollen.” Since then, my hand has continued to be swollen, with a tightness traveling up my arm – all symptoms of lymphedema and the “cording” that is associated with it.
At my last visit to my oncologist (Dr. Cancer), I told her that Dr. Hugs hadn’t been helpful. Dr. Cancer did not even look at my wrist; she just referred me to PT immediately. My first appointment was today, but last week I also attended a lymphedema class given by the specialist whom I saw today (let’s call her Ms. Lymph).
The class was helpful. Ms. Lymph explained the early warning signs – Dr. Hugs was clearly wrong about the “whole arm” thing – and explained some other symptoms. It seems to be a random condition that some of the lymph node biopsied like myself never get; others might get 20 years later. For some it comes and goes, and for others they have it for life. She told us that a survey was done of American medical schools and 15% of them spend fewer than 2.5 hours studying the lymphatic system throughout the four years of their program; the rest spend less time than that. So it’s not surprising that I got a bit of a runaround with this one. (Can you say “self advocacy”??)
Today when I met with Ms. Lymph, we started with me telling her my story. Then she examined and measured my arms, marking them with a Sharpie which we forgot to clean off, so here I type with black dots running up my arm… Next, she lightly massaged my entire arm, starting near the shoulder and working her way down to my hand. Finally, she hooked me up to a compression device (it has a name, but I forget). First, I slipped my arm into a long mitten, that I then inserted into the pump sleeve. For about a half hour, it first squeezed my hand, then, wrist, etc., on up to my shoulder.
Once all that was done, and the device was removed, my hand looked like normal again – magic! The plan going forward will be for her to repeat the massage and pump on each visit, and then wrap my hand and wrist in a special compression bandage that I’ll have to wear – and KEEP DRY – until my next appointment. My appointments will be twice a week. Within about two weeks, we’ll be able to tell if the treatment is working; and if so, they’ll continue for at least a month. I’ll then look into a compression sleeve and/or glove, which is used for maintenance.
However we did not bandage my hand today, and Ms. Lymph’s magic only lasted an hour or so – my hand is now puffy again. We decided I’ll wait until after tomorrow’s Rad Onc appointment and I have a sense of the timing of those (the radiation treatments will be daily). It’ll be easier for me if I can align them, since the Rad Onc office is not too far from the PT office.
Having my right hand (I am right-handed) wrapped 24×7 in a bandage that cannot get wet sounds like a bitch. I won’t even be able to wash my hands, and I’ll have to wear a bag over it while showering. (I guess I’m glad I don’t have hair to wash right now.) She suggested learning to use my left hand in the bathroom (and I guess learning to wash it by itself), and/or wearing a latex glove when I need to do dishes or anything using water. What a pain.
It’s worth noting that the lymphedema itself is not really that much of a problem. My hand is sensitive to pressure (such as when holding a pen tightly), but it does not hurt – it just looks puffy and feels stiff. So it’ll be nice to address it, but it’s also not the end of the world. Just one more thing.
Oh, and I still don’t have a decent photo showing both hands side-by-side; I keep forgetting to have Tad do that. It’s impossible to do as a selfie, you kind of need at least one hand to do that…