This morning Stacy and I have a day trip to Stanford for an initial consultation. We are excited that my KP oncologist was able to get Stanford to move the date for this visit that was originally scheduled for 4/8. If Stanford can accommodate me as a new blood and marrow transplant (BMT) patient soon enough, I could avoid more lengthy chemo cycles in the KP hospital waiting for a vacancy at Stanford.
Today is expected to be a long one. We anticipate 6+ hours of driving and 2-4 hours of meetings. I can nap in the car but Stacy will have the bigger burden.
A day or two before I left the hospital, a man 15 years my junior with the same AML left the hospital after 80 days! It took three cycles of chemo to get his AML into remission. I know there are many more variables in the mix but this reminds me how blessed I am.
Thank you all for your love and support and prayers on our behalf! I have been carried through the darker days thinking of the immense love and support of family and friends new and old. I am a witness that God lives and the power of prayer is real. Thank you and may you be blessed for your service. I know you all have trials in life and I pray that your burdens may be made lighter.
On Monday 3/25/2019 I was discharged from the hospital! It has been so nice to be home and not tied to an IV pump on wheels. The scenery is so much better at home. So is the food and most of all the company, my family.
I came home to find that many people have been serving me and my family while I have been in the hospital for 26 days. Home repairs, fixing, cleaning, meals… thank you all so very much! You have been saviors, doing things for my family that I could not do!
The last three days have been a mix of napping and getting a few things done at home all by others helping hands. A few more things I can mark off my home concerns list.
“Nadir” the short version: You feel almost dead and you are at the greatest risk of actually dying. An infection could run away quickly and mean lights out.
“Nadir” the Dan long version: Nadir in reference to chemotherapy is the lowest blood cell count post chemo. Lowest blood cell count often coincides with not feeling well. Since the life blood of mortal mankind is well, blood, if one’s counts are at their lowest, one might feel less alive or nearly dead. This is also the time of highest risk of getting sick from absolutely anything since the immune system does not have all the armies of specialized blood cell types to fight off the baddies.
The average lowest low of nadir is typically day 14-ish. Today I’m in day 17. I wake up feeling rather lousy and with a powerful headache. As time marches on, 7:00, 8:00, 9:00, 10:00 my head is beginning to clear and the Doctors and Nurses enter my room for morning rounds. After they made a few comments to adjustments in my treatment, it was my time to ask again about initial results of the bone marrow biopsy. Today being Saturday the oncology Doctor had rotated, so at least I was not appearing to be too loco asking the same question to the same person I asked yesterday and expecting a different result.
The oncologist said let me check and walked over to the computer for a few moments. She came back to my bedside and told me that post chemo, they hope for less than 5% blast cells and that my biopsy showed 2-2.5% blast cells! It verked, it verked, the chemo verked! That is a normal healthy person’s blast cell percentage!! She went on to say that the new blast cells also look different than before chemo and that is an indicator that they are possibly non-cancer blast cells!!! For you home gamers, blast cells can be normal and/or cancerous. Since the average person has about 2%, when a person has over 20% it is considered leukemia. When diagnosed, my count was 65%. Normally blast cells divide and mature into specialty cells such as red blood cells, white blood cells… When the blast cells are cancerous, they only build up.
Miracle #1 and step one in the best case scenario nearly completed!
Thank you all for your love, support and prayers that have blessed me and my family so much in this first step. Please keep the prayers coming.
Thursday I had a post chemo bone marrow biopsy. I have had two of these prior to chemo and the initial results have been available within 24 hours. During Friday rounds I asked about the results and I was given a rather long answer that ended in probably Monday. So, at this point, I’m thinking, “they said Monday. Not Saturday or Sunday but Monday for the results.” Then I began to wonder if they wanted to take more time to formulate a message for “the chemo was not as effective as we hoped…” So, I was still at peace just concerned at the possibilities of the doctors needing till Monday to have the results.
I’m not a doctor but I pretend to understand what is going on. From all I have gathered thus far, the best case scenario is something close to the following.
Cycle 1 of chemo is effective enough to drop my bone marrow blast cell from 65% to <5%. Then they keep me alive until my immune system is strong enough to work on its own. This is when they let me go home for a few weeks.
During my two weeks at home I meet with Stanford to begin the preparation for a bone marrow/stem cell transplant.
After the two weeks at home, I go back to the hospital for a consolidation cycle 2 of chemo. This could be as short as three days.
After chemo cycle 2, I go to Stanford for the transplant. This assumes one of my siblings is a match and is ready to donate promptly.
The transplant goes well and there are no or minimal adverse reactions to the transplant. Then, I think I’m cured…
From one of my favorite TV series “Monk,” Monk displays his uncanny
ability to notice the finest of details that others overlook. Stretching the notion
of gift and curse, is my diagnosis of AML a gift, a curse, or both?
It is probable that there is a variety of thoughts out there
regarding my diagnosis of AML. I am here to tell you emphatically that it is
not a curse! It is not a punishment. It is not a result of choices, actions or
inactions on my part or anyone else. It is not a matter of fairness, justice or
retribution. It is just a matter of fact.
I do know that there is a purpose to life. Among other
things, this life is a time to be tested. It is a time to be refined. It is a
time to become a little better today than we were yesterday. This particular
trial and opportunity for refinement may not be just for me. In fact, it is likely
that it could be more of a trial for my family and friends. So I plead with
you, continue with hope and faith! Look to God for guidance, he does answer prayers;
he does want the best for each of us. We are his children and often times what
we think is best for us does not coincide with what our Heavenly Father knows.
From the beginning, I have felt an overwhelming sense of love and support. I have felt the power of your faith, prayers and good wishes on our behalf and I thank you with a sense of gratitude that comes from deep in my heart. Thank you for visiting in person, by text message, phone call, email and so on.
This is all new to me and I do not always know how to
respond. I do not expect others to know what to say or do.
Thank you for being patient! Sometimes I receive messages
when I am in some step of receiving treatment. Sometimes I am asleep; I try to sleep
a lot! Sometimes I simply do not feel up to responding at that moment but I try
to respond eventually!
I feel well taken care of and I have confidence in the knowledge and abilities of those involved in my care and treatment plan. The nurses in particular are highly competent, efficient, and kind. Most of them have a good sense of humor too!