All I Want for Christmas is a Successful Appeal, A Super Successful Proton Therapy Experience, and World Peace. (Is That so Much to Ask?)

The lead in this story is that the proton therapy is working. I’m 15 days in now (5 to go!). Dr Simone said I probably wouldn’t notice improvements in breathing and heart function for two weeks, but things started getting better after five days. My heart rate used to cap out at about 117 during the cardio part of Orange Theory, and I would have to back off because it felt like my heart was going to explode. I’ve seen my heart rate gradually rise in the last three weeks, AND I am able to do the whole cardio half of class without having to take breaks. This week, I saw 128 for the first time in months. My constant cough is now only an occasional cough (every day, but not all day), and side effects are minuscule, just a bit of fatigue and having to clear my throat 500 times a day. I just feel better.

The procedure is simple (for me). That giant machine in the top picture can make a 360-degree circle around me, lying on the bed. It stops three times to zap the heart tumors. Painless, and it only takes about 15 minutes. The techs are super nice and efficient and professional. The drive to and from Baltimore can take an hour with bad traffic, so that’s not awesome, but I am not complaining. I have, however, been counting down.

 

 

 

 

 

 

 

 

 

 

 

 

Also counting up. I am up to two denials for coverage by my insurance company for my proton therapy. This has been a huge frustration that I think about all the time, because it makes absolutely no sense. In the second denial, they said because there are no studies that prove proton therapy works for metastatic thymic cancer, they won’t pay. They call it experimental, not standard of care. I told them that a) Proton therapy has been used effectively on tumors for 50 years. It is NOT experimental treatment on tumors. and b) There IS no standard of care for me. 400 cases of Thymic Carcinoma show up every year, so there probably won’t be a standard of care in my lifetime. But the proton therapy will and is making me feel better and will allow me to stay in clinical trials extending my life way beyond the median lifespan for folks with TC. With those trials, researchers could develop a standard of care so insurance companies wouldn’t have to go through all this bureaucratic crap. I found myself quite convincing. I’ll keep you posted.

I am also racking up my AmtrakReward miles! I visit friends I don’t see often enough and give Al and Sheryl a break from me.:-) My first weekend, I trained up to a freezing Philadelphia to hang with friends from my WESH days in Orlando. Lots of Christmas-y activities and food. And pie. And eating pie with really special people.

 

 

 

 

 

 

 

Then last weekend, I trained up to The City So Nice They Named it Twice to see my Soo-zann. I loved every second of our visit, which included Eataly, Turkish Food, lots of homecooked food, and chocolate cake. The only sucky part is that when you spend time with folks you don’t see, you realize how much you miss them. Truth.

There’s been a Redskins game…

And Capitals games (UNLEASH THE FURY!!!!!!!!!!)

 

 

 

 

 

 

 

 

 

 

 

And now, all the nieces and nephews are starting to filter in. All of them are coming home this Christmas, so it will be a full, loud, fun, hilarious, loving house. Despite challenges that I’m facing now and will face in the new year (thinking New Trial in January), I can’t believe how blessed I am. This Christmas more than others if that’s possible, it’s not the stuff under the tree, but the people who put it there that are the best part. And friends who will go out of their way to hang for a little bit and eat too much. You give me strength. Best of the holidays to all of you! #Defy, but #eatpie!!

(or crab cakes, being here in Maryland)