Trying to regroup

Trying to regroup from a scary incident that marred an absolutely magical trip to Napa.

My arm continued to swell in Napa, to the point that by Saturday morning, my right wrist bone had disappeared and my forearm rivaled Popeye’s. Only a very small percentage of those who have breast cancer surgeries will develop lymphedema. It looks like I may qualify for this group.

What is it?

Well, the surgeon removes several lymph nodes to see if the cancer has spread, thus compromising your lymphatic system. Forever. For some, there are no long-term repercussions. For others, fluid pools in places such as your breast, arm, hand and fingers. It is “incurable, painful and sometimes leads to complications.” Flying can trigger it.

Yesterday morning, I was freaking out and called the doctor to see if there were any preventative measures prior to boarding the plane to return home. The on-call oncologist told me not to get on the plane and to go to a local emergency room for an ultrasound, as there was danger I could have a blood clot. Huh? Not exactly news I wanted to hear. I wanted to come home. He emphatically stated that he did not recommend that I do that but, if I did to go straight to Urgent Care from the airport. Do not pass go. Do not collect $100.

It was not the most comforting of phone calls. The entire flight home was dominated by thoughts of having an aneurysm on the plane. Comas, brain damage, heart damage, death: you name it. Nobody mentioned the threat of blood clots from lymphedema.

The Lymphedema Association says you can NEVER do a lot of things like: get blood pressure taken on that arm, have blood drawn, get cut or scratched, get a bug bite : love this one, what do I do here? “Excuse me Mr. Bee, can you please sting my left arm instead?”, NEVER lift more than 15 pounds, avoid alcohol, don’t go in a sauna or hot tub, etc, etc.

The most troubling aspect is the potential of having to wear an extremely uncomfortable sleeve each and every time I exercise and fly or if it worsens, all the time. And, the lymphedema specialist I met back in March told me that wearing the sleeve during flying may or may not help. Nobody seems to have any true statistics.

Well, I wore the custom-fitted sleeve for most of the flight to Utah in May. It was painfully uncomfortable, not to mention hideously ugly. Imagine orthopedic hose from knuckle to shoulder. Not exactly what I’d like to wear as I teach yoga or workout myself. It would be one thing if I lived in Alaska and was always in long sleeves! How is that going to work for me as a yoga teacher in sunny San Diego?

The doctor yesterday also told me that until the swelling is completely gone that I couldn’t teach, much less practice, in the heat where I teach about half of my classes. So, there is a real impact on my career here.

I was really feeling optimistic and positive. My last chemo is this week. There is a light at the end of the tunnel. Many of the side-effects I’ve endured will disappear by next month. Imagine: hair! energy! regular workouts! fiber!

Now, I feel angry, upset, devastated at how this could impact me long-term. I’m sure I’ll reach a place where I’m able to feel positive and overcome it. But, I’m not there yet.