HOPE – (Have Only Positive Expectations)
Friday was the best day in a long time. We drove up to City of Hope in Duarte, where my Newport team of docs decided I need to be at this point. Didn’t really know where the hell Duarte was previously, but we now have the route memorized and have our newest favorite Mexican hole in the wall (La Paloma) scouted out. Following our days spent at COH, we are planning to stuff ourselves with such specialties as buche, lengua y cabeza. Or, we could go gringo with pollo. Whether we choose stomach, tongue, brain or chicken, La Paloma will serve as our Bear Flag – North. Thanks to some great friends (Tony, Jon, Harold and Blake), we received the VIP treatment at City of Hope, including a nice visit with the CEO and a personal concierge who gave us a tour and escorted us to each appointment.
I had AFBT (Another F-ing Blood Test) to start, where we learned that for the first time, my white blood cells were actually moving up (slightly, but we’ll take it). Then we met with my newest team member, Dr. P (hematologist/cell transplantation), who could be Dwight Shrute’s cool twin brother. We were so very impressed with him! His brilliance, experience and compassion blew us away. He spent 90 minutes with us laying out a game plan and answering ALL of Todd’s questions. Our best case scenario is that the Cyclosporine will turn things around in the next few weeks. If not, we’ll go to an intravenous infusion of ATG (Anti-thymocyte Globulin), where I would be hospitalized for 4 days at COH, so I could be monitored closely in a sterile environment. This form of chemotherapy is horse or rabbit-derived anti bodies that work against human T-cells, and it is used in the treatment and prevention of bone marrow problems. Not quite pig feces, but f-ing animalistic nonetheless 🙂 If ATG doesn’t work, there are other drugs that can be tried at this time. If none of these drugs work, we would go with the last resort of a bone marrow transplant.
So this is my conversation with my brother, Leason, yesterday morning…
Me: “Hi, how is Little League going?”
Leason: “Great. I’m going to coach again this year.”
Me: “Cool. I can’t wait to be able to come and watch. Hey, can I have your bone marrow?”
Leason: “Absolutely. Anything.”
I have the greatest brother! He will be tested in the next week to see if he is a match, which is a 25% chance. If not, Dr. P will check the bone marrow donor registry, where there is a 50% chance of an immediate match. He wants to get this in place now, in case we need it in the coming months. A bone marrow transplant is quite an ordeal, including chemotherapy, a 4-12 week hospital stay, and many risks. We hope we don’t get to this point.
Yesterday, I was back at my HAFH (Hoag Away From Home) for AFBT (Another F-ing Blood Test) and another platelet transfusion. We learned that my white cell count is still moving upwards (slightly, but we’ll still take it). My count has improved 50% in 3 days 🙂 My red cell counts and my platelets are still not cooperating, but my docs are most concerned about my white cells, because I would have potentially life threatening problems if I pick up an infection at this point. White cells are the ones that fight infections, and mine are so low, they wouldn’t be able to put up much of a fight. No floating like a butterfly, no stinging like a bee. My red cells and platelets can be kept at artificial but “safe” levels with transfusions, while the white cells cannot.
My veins and I thankfully have today off, then I am going back to the Hoag Cancer Center tomorrow morning for yet AFBT (Another F-ing Blood Test), followed by platelet and/or blood transfusions, depending on my cell counts. Tuesday I will meet with Dr. S1 (hematologist) and have yet AFBT (Jos, please don’t spell it out AGAIN). I have an MRI of my thighs scheduled on Wednesday with Dr. G (neurologist) to see if there is still inflammation in my quads and to look at what is causing the considerable swelling of my muscle biopsy incision site. HAFATS (Hematomas Are Fugly And They Suck), but we’re not sure that’s what this is anymore. Thursday, I will leave bright and early to get to City of Hope to have, you guessed it, AFBT, followed by a second bone marrow biopsy, followed by a meeting with Dr. P, when he’ll share with us the feedback from the panel of specialists who are meeting on my case on Wednesday.
City of Hope is an amazing place, and we are confident that their expertise and knowledge will see me through this nightmare.