I am back safe and sound from another uneventful trip to OSU. Just one more cycle of obinutuzumab (the IV-based treatment) to go. Then, I return for mid-trial testing (bone marrow biopsy (BMB), CT scans, etc.) and after that, I fly out just 5 more times every 4 weeks to pick up meds and have blood work. After that, I'll return for my third (and with any luck last) BMB and CT scans. After that, trips are reduced to quarterly.
I did have one scare over the past month. My neutrophils dipped to .3. Most of your know that this means my immune system went on a vacation and my bacteria-fighting white blood cell count was well under .5, the level that you need to be at to have treatment. Fortunately, Dr. Byrd overruled the nurse practitioner and they gave me a week to recover, along with strict orders to avoid crowded places, raw vegetables and pretty much anything else that had any potential to get me sick. I did avoid getting sick, which is good because if I did, it would have meant 4 days in the hospital which would have been a 4 day prison sentence to me. Thankfully, week over week they bounced back to .9 and then 1.4, which is normal. Last week, I was up to 3.2, the highest it's been in many months. Everyone was pleased and surprised by this rapid recovery.
December 4 marked the anniversary of when my GP said she was pretty sure I had lymphoma, so I couldn't help but reflect. Without question, it has been a year full of ups and downs, which included 8 days in the hospital and 17 trips to Columbus. My work schedule was totally disrupted and had to lower my expectations for my business, not to mention I missed most of the (fun) conferences and industry functions. I had to drop out of the Broad Street run (a 10 mile run through Philadelphia) and my exercise routine was compromised because I was really falling apart by May.
While I wouldn't wish these setbacks and cancer, let alone a particularly intractable version, on anyone, the odd truth is despite how hard and heartbreaking this year was at times, it has been an amazing year. I still managed to grow the business over 80% year over year, and keep my staff engaged enough that they voted us 3rd best place to work in Philadelphia, Philadelphia Business Journal, < 50 employee category. I managed to help son self-publish a card game. I even managed to improve my skating skills.
But most importantly, revealing others what I was going through enabled my personal relationships to evolve an entirely new level. I feel far more connected to my friends and family than I did a year ago, and believe it or not, I'm a as happy person. It turns out that the research supports this unpredicted consequence of my illness, and if you are interested is seeing the TED talk on this subject, click here:
ted.com/talks/robert_waldin...
Finally, I am truly grateful for the support from those of you on this forum who answered questions and cheered me on. I hope my posts in some small way pay it forward. Looking forward to kicking cancer's ass together in 2017!
Pirtobrutinib triple trial Cycle 7 update
