Lymph, Laugh, Love

Lymphedema is still an issue. My body is not cooperating. I'm really lucky because I don't have a bad case of lymphedema, but I need to get it under control before it gets bad. I don't even want to discuss the icky pictures I saw of what happens when it gets out of control (lymph can leak out of your skin!).

Wrapping, which is supposed
to help move the fluid out of my arm,
seems to be pushing it into my hand

While researching plastic surgeons, I found a hospital in New Orleans that specializes in all issues related to breast cancer and recovery. The Center for Restorative Breast Surgery (breastcenter.com)offers microsurgical repair for some lymphedema patients, where they actually move nodes & surrounding tissue from an area that is less likely to flare up and move them to where you've had nodes removed. If you read up on the lymphatic system, you'll find it is a really wimpy system, so the fact that innovative surgeons have devised a way to surgically repair it is amazing.

Charlotte thinks the Caresia
sleeve looks like "superhero muscles"

Don't get me wrong, the 4 weeks (so far) that I've been in physical therapy have helped. We're going to re-measure my arm next week, but I can see that it's not as puffy as before. And, while my hand swells up after wrapping, it does go down with the help of pumping, massage & the Caresia sleeve and glove. I've been lucky to work with so many of the great physical therapists at BiB (shout outs to Beth, Michelle, Sally & Katie). Katie thinks I may be ready, next week, to get fit for a compression sleeve and gauntlet, and those are much easier to deal with. Woohoo!

Radiation has started. I'm 5 treatments in (23 to go!) with nothing to report other than a little anxiety, which seems to be easing, and some redness and itching, which didn't develop until after treatment #4. I've been applying the Radiaplex Gel (which is really a cream, not a gel) and Aquaphor 3-4 times a day to help keep the skin moisturized and hopefully help prevent any skin issues. I find it is easier to use the Radiaplex during the day because it doesn't make my clothes stick to my skin the way the Aquaphor does. Aquaphor is an excellent product, but it is really thick and doesn't absorb quickly. I think it is better to use that one at night as I don't really care if my pajamas stick to me while I'm sleeping.

The door to into the radiation suite
resembles a bank vault door and
this sign welcomes all who enter.

I have radiation every weekday. Denise, one of the technicians, was able to redo my schedule so all of my appointments were first thing in the morning. I get up each day, shower off all the creams and gels (because you must have perfectly clean skin before they burn the crap out of it) and head into town.

FYI: Perfectly clean skin includes not wearing deodorant/antiperspirant. I live in the south, and it's summer. It's hot, even in the morning. Get where I'm headed here? It's not bad, but I'm really conscious about it, particularly when I am laying topless on that table with three to four people leaning in over me at any given moment. Uncomfortable! Why no deodorant? Because of the aluminum. All of the docs there, and the plastic surgeons I've encountered thus far, are anti-deodorant. There is, in fact, an entire school of thought that thinks deodorant will kill you. Ok, maybe I'm exaggerating a little. Seriously, look it up!

Anyway, when I arrive at radiation, I check in and walk back to the changing room. I have a purple gown ( a clean one each week) waiting for me in my cubby. I change and wait some more. When I'm called in, birthdate verified, I go directly to the table, hop up and disrobe from the waist up. It's cold in there, so I guess it's a good thing I don't have nipples anymore. The techs make sure I'm lined up (red laser beams and lights from the machine have to line up with the 6 tattoos I got during planning) and then we get started with at least 2 XRays each time. They are constantly checking and rechecking that everything is lined up correctly. The machine moves around a bunch and makes loud buzzing sounds. The pins inside the machine that control the field of treatment remind me of those toys where you could push the pins in and they'd hold whatever shape you pushed in to them.  At some point during treatment, one of the techs comes in, asks me to take a deep breath and then draws dots on my chest.  I usually forget that the dots are there and go about the rest of my day with black Sharpie marks on my chest, showing above my shirt collar. I spend most of my time on the table holding my breath and taking breaths. I hear "Take a deep breath. Let it out. Take another deep breath and hold it....  You can breathe." about 15-20 times each treatment. Dan, the lead tech, tells me I am good at this, holding deep breaths within 1mm of the depth of breath I took during the planning session each time. Go me!

In other news, I've scheduled a consult with Dr. Zen at Duke Cancer Center to discuss my reconstruction. I was just saying I could use a little Zen in my life! I'll see him on July 9th. I hope he has some good news to report about my reconstruction options, and that he's very straight forward with me about what I can expect. I don't really care for surprises. I can be a little type-A. I'm sure you've picked up on that by now. I'll let you know how that goes.

The last bit of news is that I've finalized the schedule for my hysterectomy and port removal surgery. It'll be on July 18th. I've been instructed that there will be 3-4 weeks of downtime, the first week will be icky, beyond that I'll probably feel pretty good, but I have to rest and let my body heal anyway. We'll see how that goes. If you're doing the math in your head, let me help: yes. I will still be in radiation treatments at the time of surgery. Surgery is on a Friday. I'll have radiation in the morning, head over to the hospital, have surgery, stay overnight, recoup the rest of the weekend at home, and then back to radiation on Monday. It probably won't be fun, but Dr. Kotz was pretty adamant that I get the surgery done A.S.A.P.  And, I'm getting a little anxious myself. I've heard of more women who've had clear scans of their ovaries and were "riddled" with cancer when they had their surgeries. My scans were clear. I have no symptoms of ovarian cancer and I have no reason to believe they'll find anything. That said, I'd appreciate not hearing about any more instances like that. I've had about enough things to face bravely this year. I need a vacation from all this!