July 4th, 2017: Boston

Well, Boston is a lovely, clean, and patriotic city and I am very thankful for the opportunity to come out here! I had my 2nd opinion with Dr. Oxnard out of Dana Farber Cancer Institute yesterday. He reviewed my scans and medical records and talked a lot about his specialty in studying cancer beyond the cancer…in others words – the biology of HOW and WHY cancer mutates, specifically in young patients like me. He validated that my standard of care thus far has been stellar at OU and that made me feel so good. He also noted how I “look good” for being stage 4… I can only imagine the state of most patients who seek help in their last efforts to hang onto life. 😦

Anyway, Dr. Oxnard spent an hour and a half with us after his long day, taking a lot of detailed time to discuss how there are not very many different treatment options that could be done RIGHT NOW for me (God feel free to sprinkle some extra patience on me now!!) until he spent more time looking at my tumors that have grown, which led to his professional advice for another biopsy. In the meantime of scheduling that biopsy, having it done, waiting for lab results, etc…,he mentioned that we could add back a TKI (like going back on Tarceva or trying Tagrisso) and combine it with an immunotherapy for 4-6 weeks. If you remember, February was when I had my last tissue biopsy, but that was an aspiration biopsy and they did not get a good sampling to see clearly what exactly the tumor was doing as far as mutating. Dr. Oxnard felt that since the tumors have grown in size in my lung and liver, he could get a good core sample now through a biopsy procedure. So we left that conversation at he and my OKC oncologist would talk after today’s holiday and decide (if I agree to this biopsy) which hospital/city would be better for that to take place in. So we will know more about that later in the week. 

Honestly, I was under the impression that we were going to be reviewing a fitting clinical trial right off the bat and I’d have that situated by weeks’ end but without him knowing more pieces of my puzzle, he only had one on hand that involved a listeria vaccine, which was one of the far reaching, not ideal but possible options. His awareness of my lepto-meningeal disease in my central nervous system led to the discussion of needing more study time to research other “appropriate” trials as my case is tricky.

It was clear to us that the resources and specialists here in Boston are quite advanced but because I don’t 100% feel like a path is set in stone we are continuing our quest to see another oncologist, Dr. Johnson out of Sarah Cannon in Nashville, TN. We have a meeting with her tomorrow morning so will be saying goodbye to Boston quite early in the morning. We are serious about leaving no stone unturned. I realize more and more each day that this is a process, not an event. This is a journey, not a destination. And this journey needs to be carefully mapped out and adjusted over time.  

For now, I am incredibly grateful for my husband’s willingness to be by my side, faithful and strong; for my mom who could make this trip with us and for my dad to care for Bentley (who I miss sooooo much) while we are out of town. Family is the biggest blessing. 

More to come warriors! Prayers for safe travels over to Nashville and continued discernment for next steps. Xo

2 thoughts on “July 4th, 2017: Boston

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