Full I think is the best way to describe the four weeks since my last dispatch from Pittsburgh. I can't begin to cover it all. But the highlights are that for almost three of those weeks we've been back home in NC, I'm continuing to recover slowly but surely, Rachel and I are back to work, and we're beginning to turn the page on this saga.

Earlier this week, however, I was back in Pittsburgh for my one-month follow-up appointment, the main purpose of which was to check on the reconstruction inside my head and make sure it's healing appropriately. Rachel is past the no-fly point in her pregnancy so my above-and-beyond Board chair and friend, David Sandak, filled in as my companion on this trip.

Last week, I developed some new symptoms which were potentially indicative of a problem with the reconstruction and, thus, had us a bit worried for a few days. Out of an abundance of caution I was put on antibiotics. Thankfully, by Sunday, though, the symptoms started to improve. And, during my checkup, Dr. Snyderman confirmed that indeed everything is healing as expected — a big relief to say the least!

With that good news, and now that I'm nearing the end of the window in which spinal fluid leaks are a risk, I'm free to start ramping back up physical activity and easing up on lifting restrictions. Now just two more weeks until I can lift Sam again — in time (we hope) to be useful again as a parent and partner as we prepare for the new baby due next month :)

In other very good news, the molecular analysis of my tumor is consistent with a chordoma on the low-grade end of the spectrum. In particular, based on a test called fluorescence in situ hybridization (FISH), the cells in my tumor appear to mostly retain two specific segments of DNA, the loss of which, the team at the University of Pittsburgh has found, is correlated with tumor aggressiveness. Thankfully, the level of loss of these markers in my tumor puts me in a low-risk group when it comes to recurrence. Additionally, it suggests that I would be unlikely to derive any further reduction in risk from follow-on radiation, which has, historically, been the norm for most patients after surgery. If anything, the team in Pittsburgh speculates that radiation in my case may pose a greater risk of introducing genetic changes in any remaining tumor cells that could cause them to start behaving more aggressively, not to mention the definite risks of side effects of radiation to that area of the head.

What all this means is that I most likely will forego radiation in the near term (as I did after my first surgery) and will hold it in reserve as an option in case the tumor ever does come back again. Whether that will happen is impossible to say of course. On the one hand, conventional wisdom is that once you've had one recurrence the cat is out of the bag and more are likely to follow. On the other hand, it's also possible that I am actually now more "cleaned out" in a sense than I was following my first surgery given how much extra bone was removed this time. In any case, barring a change in the tumor, whatever is left in there is likely to continue trudging along slowly based on what we know of its behavior to date and results of the FISH testing.

There are caveats of course. Tumors often do change over time. There's very little data anywhere in the literature following patients past 10 years. The study that established the link between FISH test results and tumor aggressiveness was based on the experience of a single center and needs to be validated on a larger cohort and at other institutions (as an aside, the Chordoma Foundation is gearing up to support a project to that end).

While we can't know what the future will hold, certainly it does not feel dire at this point and Rachel and I feel infinitely grateful to continue to be able to envision a bright future for our family.

I also feel an overwhelming sense of gratitude to be the beneficiary of so much accumulated medical knowledge and such spectacular medical capabilities. I've been in awe more times than I can count at the skill of the doctors and nurses who took care of me, the range of technologies and techniques they used (a number of which, like the FISH test, are new since my last surgery), and the highly-developed web of organizational infrastructure upon which all this rests. To be sure, there is much about this world that can and should be improved, but I find myself emerging from the last month with newfound appreciation to be alive at this particular time and in this particular place, knowing that at any other point in history, and in many other places today, the positive outcome I've had to date would not have been possible.

Amidst all of these happy big-picture developments, though, the past month has been more of a struggle than I would have imagined, especially after such a great surgical outcome. Between both Rachel and I not being 100% physically, trying to catch up on multiple fronts, and preparing for the baby, it's still taking everything we have just to keep the wheels from falling off. The challenge has been compounded by some lingering symptoms, most notably fatigue, which is greater and more persistent than I remember it being after my last surgery. My expectations were definitely not realistic and the gap between expectations and reality has been frustrating. And it has placed a bigger burden on Rachel in recent weeks than we anticipated. I definitely have newfound empathy for others who have dealt with fatigue — it’s a real thing — and the caregivers who backstop them. Thankfully, it is getting better week by week, even if more slowly than I’d hoped.

The saving grace is that Rachel and I have continued to be absolutely overwhelmed by the kindness, generosity, understanding and support of so many throughout this journey. Though it has felt uncomfortable at times to continually be on the receiving rather than the giving end of it all, the opportunity this has created to connect with people we love and admire and enjoy has been a real silver lining.

For me, being the recipient of Rachel's love and care, and experiencing the way she has managed to maintain a bubble of relative peace and lightness surrounding me and Sam among the tumult of the past couple months — all while in her third trimester — has been nothing short of awe inspiring. I don't know where she finds the strength and energy to do it all. She was already amazing in my eyes, but seeing your spouse shine in this way is a beautiful thing and another small gift of this whole ordeal (granted, one that both of us would have gladly foregone).

So too have my colleagues at the Chordoma Foundation shined during this time, keeping everything moving ahead at full steam in my absence, and rallying to lighten the load for me as I’ve returned to work. I feel so proud of the team we’ve assembled at the Foundation and more grateful than ever for everything they do day in and day out to carry out our mission on behalf of those of us affected by this disease. I also found myself missing the regular interaction with them while I was out so it feels good to now be back in the fold.

Looking ahead, it feels like there’s light at the end of the tunnel and we’re ready to move past this chapter in our lives — hopefully, in the next couple weeks. There’s a long list of things at the Foundation and at home that I’m itching to tackle. But, I’m trying to be patient and realistic. Most importantly, our focus now is turning to the new addition and to supporting Rachel through the home stretch of pregnancy and delivery.

Unless we get thrown any curveballs, this will be my final post here for a while and I’m not sure what, if anything, will warrant updates in the future. But life is never dull, so who knows. In any case, I deeply appreciate all of the well wishes, prayers and encouragement from everyone who has been by our side, literally and figuratively, through this intense part of our lives. You have been a godsend. Now I look forward to getting back to having other reasons to be in touch!

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