Wednesday, December 7, 2016. Man does it feel good to write this. [It will feel even better on December 21 (and then again three years from now when the maintenance program is done).] But first things first.
I always enjoy watching the Kentucky Derby and hearing the announcer say “[a]nd down the stretch they come.” I don’t particularly like horses or horse races. But the home stretch of the race always excites me. And being able to get to “our” home stretch today is a sweet feeling. We know this is far from over and it is certainly not lost on us that we are lucky and incredibly fortunate to be where we are today with an unbelievable network of support throughout. We have, however, been confident from the get-go (and at the same time scared).
After two weeks of rest since the last treatment session, today marked the beginning of the protocol’s final two-week stretch. We have eight more days of chemo, but the worst day (today) is behind us. It included 5 different chemo treatments including another spinal tap procedure. Only one chemo treatment each day the rest of the day (through December 21).
Today was also monumental for me in that it marked the last spinal tap of 2016. No matter how many there have been (12), I just cannot get comfortable with the thought of something going into the spine. I start getting agida about 36 hours before. Today I was shaking and they had to wait a few minutes before getting started (definitely had to do with the anticipation of being done done). But I have the best care and they know at this point what a nudnik I am. Jen being the foremost expert on both my attitude and how to handle it. [While we have 12 more over the maintenance period, we will deal with them as they come…]
These next two weeks won’t be fun, but the last two weeks have been great. While I have not necessarily felt great at all times, Jen is an expert at this point and we have been able to really enjoy our time together (as we have throughout). A lot of this has to do with the reality that getting back to normal is in sight. I finally feel comfortable getting back involved in minor things, knowing for the first time I will avoid false starts. It will be a good thing for all of us. My wife is as supportive as they come and knows how excited I am to get back to work. That makes her excited. [I also know she is excited to get her life back too as this has been the hardest for her.] Health is the priority and I am not going to do something to jeopardize that (like running at my normal 110 mph out of the gates), but getting back to work as soon as possible is a priority for us too. The lack of sleep over the last couple of weeks is partly due to medication, but mostly due to the excitement of being able to get back to everything we do. Of course it will be with a whole new — and better — perspective on life and stress, together with an ability (hopefully) to avoid sweating some of the smaller stuff on a daily basis. The silver lining in these last eight months has always been the time with Jen and the boys. Lunch with Jen daily and a random Monday trip to the mall mid am are hard to top. Hugs in the morning from the boys, dinner together every night and watching the Cavs (including tonight against the Knicks), does not get old. I enjoy the moments more and will continue to for many years to come.
Thanks to everyone for the support that we have been blessed to have in so many different forms throughout these 8 months. It started in late April and never stopped. It means so much to us and makes all the difference in the world as we grinded — and continue to grind — this out. It is something we are working to capture through a charitable organization that we intend to announce soon, which will be able to directly support some of the 2,000 families that are challenged with acute t-cell lymphoblastic lymphoma each year. More to come.