Update from yesterday's meeting

Goodmorning All:

Figured I would provide a brief update (and not the answers to all 30 questions I managed to get answered!) from yesterday's meeting with my primary doctor at Hopkins.

I didn't anticipate that I would come away with much new information about my diagnosis/prognosis etc. I've pretty well researched that as much as I care to at this moment. I did learn a bit more about the difference between Acute Lymphoblastic Lymphoma versus the more common diagnosis with the same initials--Acute Lymphoblastic Leukemia or ALL. I had thought the difference was the advancement of the disease into the bone marrow. Where my marrow was marginally affected (less than 25%) at the time I began treatment I believe I had read somewhere that had it gone above the 25% mark I would have been diagnosed with ALL. As Dr. Connolly explained yesterday, however, it is more of a chicken-and-the-egg sort of thing. The current thinking on the difference is the genesis of the disease. Did it start in the lymph nodes (where the primary infection was in me)? Then its Lymphoma. If it is in the marrow and blood (with little or no infection in the lymph nodes, normally) then it is Leukemia. Hardly matters much as the treatment regimen for both is the same.

The best news is that my 8 treatments are pretty much it for hard core treatment. There is talk of possibly using a new practice of a radiation treatment regimen on the lymph nodes in my chest just to make sure we're pushing the cancer cells over the edge--but that all needs to be weighed and discussed. Otherwise, my dresser-top full of pills will be replaced by three pill bottles with only one pill being needed every day. My inpatient trips to Hopkins will end after round 8. My outpatient trips to Hopkins will be limited to some intermittent follow ups to be certain that I'm not having lingering proneness to infection following the chemo regimen and then will dwindle to one outpatient visit every 3 months. I'm still on track then to return to work in some form by mid-March once the blood counts recover from round 8!

My Hickman catheter which limits my physical activity, my showering habits, requires Marla's new found nursing skilss most evenings, and is an annoying daily reminder of all that I am enduring will be able to come out soon after round 8 (once we determine that I'm beyond risk of needing intense infection treatment or something that could still use the catheter instead of a traditional IV).

I've been cleared to my satisfaction that I will meet my goal of coaching Nolan's baseball team and I've already made that commitment to the team in an e-mail last night. Additionally, it seems that with my Hickman likely able to come out in late March or early April, my ability to actually PLAY baseball seems that much more probable.

The risk of infection ends following round 8 so I'll be able to eat any food I like, be around people, go to sporting events, movies, the mall, when I choose. We'll also be able to start thinking about a puppy to replace our dearly departed Bungo.

I think Marla put it best on the way home yesterday when she said that, by comparison, what awaits us after round 8 seems almost like Club Med.

I do still need to point out the stark reality that while cancer seems to have left my body the yeoman's work will continue for YEARS after round 8 to ensure that it does not come back. The odds of relapse (at least looking at some somewhat dated reports) are not insignificant and so I will remain in some form of treatment for another 2 years.

In all, it is nice to shift the focus of my eyes from where I stand today to somewhere further on the horizon. Right now we're looking squarely at the next several months while taking peeks at the next 2 years. Marla has instructed me that, at 36, I'm committed to another 49 years--putting me at 85. I guess I'd better get my head up a little further . . .