*Dusts off keyboard*
It has been a few weeks since I have written, mainly because I just wanted to focus on my chemocation and take it all in. As promised in the last entry I basically ate everything. Pizza, Thai Food, Indian Food, Salads…you name it, I probably inhaled it (and didn’t throw it up).
The past few weeks were spent processing and agonizing over my next steps. Would I go to Boston on April 7th and accept a dose reduction or would I throw in the towel? As each day that I felt more like myself passed, I could not possibly imagine going back to that trial. Despite MGH’s stellar care, this trial was just no longer for me. By yesterday morning I had my answer and I was sticking to it.
My parents came with me to this appointment. I often like going to appointments alone but on that day I needed them to help me hold it together. Plus, a bonus was not having to drive myself through Boston rush hour traffic. The carpool lane shaved off at least 30 minutes and preserved the remaining scraps of my sanity.
I first had an echocardiogram (aka gooey hospital nap) then we headed up to 9E Yawkey to meet with oncology. Tina was the first to stop in the exam room. She gave me a big hug and kiss and asked how I was doing. At that point I decided it was safe to just say it: “I think I’m done. No, I know I’m done. I’m done.” Tina has been with me through the successes and the hardships of the past year. She knows that if I say that I’ve had enough, that I’ve really had enough. Like our phone call from last month, she was supportive and said she would give Dr. Birrer a heads up.
Laura came in next and took a few vials of blood from my chest port then we anxiously awaited for Dr. Birrer to arrive. When he came in, I reiterated to him what I had said to Tina. He was very understanding of my position and without being pushy, initially offered me the option to dose reduce one last time if I wanted to. I was not in favor of another dose reduction as in my head, I had already broken up with this trial. At that point the CT scan results were not yet ready so we sat and waited in the exam room for a bit longer. I quietly stared at the walls and floor, my mom tried to make light conversation, I was just too nervous to engage. All I wanted to know was what is happening inside of my body.
Finally, Dr. Birrer came back with the scan results. In a nutshell, they were a bit of a mixed bag. A few things were reported to us:
1.) The tumors that were present at the beginning of the study were measured to be substantially smaller than when we started. This is great news because it tells me that we made some progress and the entire last year was not a waste.
2.) The fluid-filled cyst in my abdomen is still there, we still have no idea what it is and how it got there. *Shrugs*
3.) There is a small amount of fluid in my abdomen and some fluid buildup surrounding my lungs (NOT in the lungs, luckily). I’ve been very short of breath lately with a wicked dry cough so this explains a lot. Dr. Birrer said that my hospital could certainly stick a needle in there and drain the fluid. That shall be on my to-do list for the next few weeks because this whole shortness of breath thing has GOT to go.
4.) They found “progressive disease” which I take as doctor speak for new tumors. New very small tumors were found on my liver and abdominal wall. Crap.
Interestingly enough, even though I initially was quitting the study, the trial’s protocol states that if progressive disease (new tumor) is found, the patient’s trial must end automatically. So either way, the trial was done even if I didn’t want to quit.
I’m not happy that new tumors have developed and I think I’m still processing this news. I’m at ease with it right now but it will probably hit me in a few days. Most likely in a public restaurant with Cory, that’s where I do all of my best crying…poor guy. The silver lining of this news is that I can leave the study, as I wanted to, with absolutely no regrets. Since the study had to stop I no longer had the choice to continue at a reduced dose. I won’t look back in six months and think: “did I make the right choice? What if I had toughed it out just a little longer?” The decision was made for me and I can walk away feeling good about the work we did in Boston, despite its hardships.
So where do we go from here? On April 17th I have an appointment with Dr. Robison in Providence. We will discuss some of the options that we have on the table and start the process of making an informed decision about the best course of action. Until then, I have no further information.
I will use the next few days to work, eat well, spend time with friends, and get beat up by my super mean trainer (kidding, he’s the only reason I deadlift without dying myself.)
I want to take this opportunity to thank the folks at Mass General Hospital. Dr. Birrer, Dr. Dizon, Tina, Laura, Ali, Daph, and even sweet Blanca at the front desk. We have been through a lot together over the past year with this clinical trial and despite the challenges this team made me feel deeply cared about. It was very hard for me to leave WIH, a hospital I loved so much, but I learned that I was put in the most loving and capable hands in Boston.
I also want to thank everyone that supported me from near and far over the past year. It has been a wild and mostly unpleasant ride. As always, the love and support has kept me going and will continue to as we face this next treatment plan.
Love and gratitude 🙂