Never Been So Happy to See a Monday!

The quick trip to Lubbock was exactly that- very quick! We were so excited to engage in prom activities with Ashley, she looked amazing and we were so happy to help her feel special in the midst of the reorganization of our lives. Although both kids have been amazingly resilient in all of this, and have kept their sarcasm and humor in tact (we have no idea where this comes from), I've often worried that they have been left out as 100% of the attention has been shifted to my medical issues. Therefore, as our brain tumor vacation comes to an end this week, we will try to do some special things to celebrate and have quality family time in Houston. So far they only said they want to have a celebratory dinner with family. I'm not sure why they are not asking for something high stakes, perhaps this has been more traumatic for them than I'm anticipating. Now that I think of it, therapy may be in order...

We are SO EXCITED that I have 2 more proton therapy appointments! I am so tired of getting up early, putting on a brave face, and going over to be tied down to that table for 20-30 minutes each day. I mean, I'm not judging people who like to be tied down. It's just not so fun to have your head tied down to a steel table with a mesh mask and be shifted around into different positions while you lie perfectly still. I will miss the proton center and the amazing people over there, but I will definitely not miss the daily grind. For the perfect celebration, Poppy and Jane will be coming tomorrow so that they can be here for the final treatment and the ringing of the gong. I'm thinking about making someone sing so that I can gong them off the show! 

Jason and I met with oncology today and got a little information about what to next expect. We will see radiology tomorrow for my regular checkup to make sure there are no serious side effects from the radiation, I will do blood draw on Wednesday, and we will be in our yoga study for Tuesday and Wednesday. Other than an appointment with my trainer at the gym, we will have all of Thursday and Friday to pack up and get ready to leave. 

Once back in Lubbock next week we will need to find a neuro oncologist in town who can oversee my continued chemo and deal with any side effects. I will be on chemo pills for 5 days per month, starting on every 28th day or something similar. I will learn more about that when I get back to MDA on May 23rd. We asked lots of questions and got lots of answers today, even if those answers were tenuous. Here is what we know. From here, we continue the course with monthly rounds of chemo and continuous trips for checkups in Houston. This could be great or a curse for our Houston friends and family, no one has been brave enough to be honest about this yet. We still say that we may eventually need to have a place in Houston but for now we are very grateful for the continued generosity of Bob and Lois, who have made their Houston home available to us whenever we have needed it. So many of our people have really shown up for us during this time and we are so incredibly grateful!

The most important thing we were told today is that this is now going to be a reconnaissance mission. We continue the chemo monthly, we continue the trips to Houston, we continue the monthly (and eventually bimonthly) scans looking for new growth. If new growth occurs, we will then decide what the next course of treatment will be. Oncology says everyone is different and there is just no way right now to predict what could happen, how the tumor might mutate, etc. For example, we were told about a woman in a clinical trial where they tried a chemo originally for thyroid cancer. It worked only for her so they are continuing to use it only in her case. They don't know why it worked for her and not for others. Other patients have had similar experiences with other treatments, but for every story like this there are 5 people any given treatment didn't work for. We do know that there are some characteristics that survivors (of 10+ years) share in common: 1) they had thorough tumor resections (we had the best surgeon on the planet, who felt he got every visible cancer cell) 2) they are young, healthy individuals who continue to keep themselves healthy with diet and exercise (check!) 3) they continue to live full lives (I dare someone to try to stop me, although I may require naps between my fun). We were told that a second round of radiation (or proton) is rarely recommended because too much radiation makes long term risk of different cancers possible. Some future options could include another surgery, other chemo options, and clinical trials if we see regrowth. 

As far as this diet goes, I'm learning how to increase fat without increasing protein, carbs, or sugar. It's actually sort of like a puzzle. For example, multiple friends have helped me learn about Bulletproof coffee, a great way to increase calories while not introducing anything that can be turned into sugar in the bloodstream. Today I was in dire need of calories but it was too late in the afternoon to have caffeine. For the first time in my life I saw the value of decaf coffee. I've always said that there was no point, but I found its purpose today: catalyst for calories. Perfect!

As a last note, we have completed paperwork with MDA to get the money we paid for proton since insurance notified them that they were approving the treatment. We have not been told how long the refund will take but it should be imminent. Someone should tell Jason that no matter how many times he checks our balance, it won't make the transfer go any faster. We will settle everything else when treatment is done, we are settled back into Lubbock, and our college fund is at least partially in tact (we won't get 100% back because co-pays, co-insurance, and other things owed). I'm ready to move on to the new normal in Lubbock!