This is the short version. As most know by now, I was diagnosed with “T-ALL”. T-cell acute lymphoblastic leukemia (T-ALL) is a type of acute leukemia meaning that it is aggressive and progresses quickly. It is common in Children, but rare in Adults.
Robn has been, literally a ‘Life Saver’ in that she made sure that I got help during a major bleed inside my skull. She got me to Dr. Cassaday, who quickly realized that I was in serious trouble and an excellent surgical team went to work and saved me. Robn says this is an exaggeration, as the visit with Dr. Cassaday was an already scheduled event. The bleed had caused worsening symptoms that concerned her, but were not sudden enough to create a recognizable crisis. In any case, the problem was found early enough to avoid major and/or permanent damage.
Before, during and after that she continues to do thousands of things to help me during my treatment. Other Friends and Relatives have done wonderful, important stuff, but Robn usually suffers the same sleep deprivation that I have, as she is a light sleeper and if I am awakened, she is nearly always awake, too. Plus, she is doing shopping, laundry, etc, plus talking with Doctors, reading Insurance gobbledygook and so much more important stuff. She is Far Beyond Priceless!
She has also been writing a very detailed “Journal” about our Journey. Recently, this has been our Medical Journey. Some Medial friends have complimented her on the important details that she includes. And, she just gives the larger bits.
If it is too long to suit you right now, here is the short version as of 23 Nov, 2019.
In June 2019, I tried to donate blood and I learned that my blood tests were showing low Red, White and most blood components. The Doctors were puzzled, but not worried, until, on 15 Oct, 2019, my white cells were 148! They are supposed to be between 3 & 10. This meant some kind of leukemia. A serious infection might show as 12 to 30, but 148 was very bad! I was sent to the local ER in Gig Harbor / Purdy, WA and they sent me to the University of Washington Medical Center, UWMC, in Seattle. I began Chemo about 19 Oct. That seemed to be relatively OK. However, sometime between the 19th of Oct and 9 Nov, I had a major brain bleed, with a large, 18mm thick layer of blood inside my skull, on my right side, pressing on my brain. They cut about a 1.5" hole in my skull and used titanium screws, etc, to repair it. I am fine now (22 Nov) but I have no memory of about the 5th thru the 11th of Nov. The brain does not like to be squeezed.
I joined a study that is testing the new, and very encouraging “DA-EPOCH” method of treating this aggressive disease. That name stands for “DA,” dosage adjusted, then “EPOCH,” which are mostly the initials of the Chemo Cocktail Ingredients. It is usually a 21 day cycle, that begins with 96 hrs of continuous Chemo, followed by an hour of a different Chemo drug, followed by verification of results, followed by a “rest” of a couple of weeks and then repeat. Two to eight cycles. Depending on the results, it might branch off into Bone Marrow Transplant, or Stem Cell Methods, but, it is way too soon to decide about those. There is no certain path at this point. The first cycle eliminated all but less than 3% of the bad cells, and dropped the 148 White Cell Count to less than until the bone marrow could make better than 97% good cells.
A friend of ours was reading Robn’s Journal and quite correctly pointed out words to the effect, “It would be better to be positive rather than negative. Why not change the mentions of poisons, to ‘powerful, State of the Art Medicines’ and similar? Be honest, but put a much more positive spin on it?”
Agreed, but Robn is writing about what we were going through at the time and while we certainly should always emphasize the Positive, she tends to show our sometimes less Positive mind set. As you follow along, it improves. We have, from the beginning in mid-Oct, been certain that the team of Medical people at the UWMC, SCCA, etc are where I am supposed to be. I am as certain as I can be that they are my best hope. They are excellent!
We believe that ALL of the Medical Team are using all available tools in their ‘toolkit’ to carefully fix me. Some tools are very powerful but are not able to attack only the leukemia. The Team has to correct for this but can only use the tools that they have. In a ‘Perfect World’ no one would ever be sick. Or, if they were, a special drug, or something would only kill, or even just repair the defective cells. We are not quite there yet, but we all wish that we were. My Team is the Best that I know of, anywhere!
I will now post more of Robn’s Journal Entries, and may add Short Versions, from time to time. Search for the phrase, “Short version” to try to zero in on them, if you like.
We send all our best wishes and positive thoughts to you. And hope for a rapide and complete recovery. Love from your Danish friends