I turned 50 on September 17th, 2014.
Allow me to share how my morning has gone so far.
My daughters took me to my oncologist. They got to meet her in a new capacity. It was an important visit as I got them, for the first time, completely into the medical flow of information. They are signed off on HIPAA forms, heard the doctors report, lab reports, and are now helping me with Stem Cell Transplant information. Good way to begin my 50th birthday celebration indeed.
Let me update you all on how the visit transpired. My lab values were borderline low to too low to start chemo. My hematocrit was right at 30 (not a bad number, minimally acceptable). My Neutraphils were 4,000. They need to be 12,000 or greater. My platelets are 55,000 and need to be 100,000 ideally, although 55,000 isn’t totally bad. The low neutraphils combined with low platelets is the dig for the moment. Not bad, but not ideal.
My oncologist is of the opinion we are going to change the timing of the RICE regimen. Our goal has been to be admitted every 14 days, basically every other Thursday, to complete one cycle of RICE. Three months worth of RICE total minimum was the goal. Now, due to repeated slow to rise blood values, she is wanting to begin every 21 day cycles of RICE with 6 cycles of chemo as a minimum. In essence, we could continue to push hard and accept delays, but it appears it is effectively 21 days between cycles is realistic. She stated my bone marrow is not strong and perhaps the timing will allow for natural rebuilding.
The tumor is not growing. That is the consensus for the moment. Burkitt’s is sneaky and fast. Therefore, we’re going to do a PET scan in the second week of October. A “PET” scan is an interesting test that looks for hyperactive activity in the body. Cells use sugar. All cells. They will inject “radioactive sugar” (not exactly, but close enough for purpose of this writing) and will watch my body as the normal level of activity occurs and look for “hot spots,” areas with the sugar uptake is too fast and extremely active. It does not mean cancer, it only means fast paced cellular activity. Could be cancer. If I light up in a region or all over, then it is suspicious. For example, healing wounds are fast paced cellular activity. Lymph nodes with explosive growth of white cells are hyperactive activity. High areas of activity can then be targeted for biopsy is necessary. Bottom line: do I have tumors spreading that we can’t detect? That is the basic question that will be attempted to be answered.
I was diagnosed this summer with Stage 2 Burkitt’s Lymphoma. Why stage 2? Four stages in cancer (one method of classification of how bad it has spread, there are other classification tools) with 1 being most minimal and 4 being full body and bone involvement. The PET scan this summer revealed that the cancer was not contained only to the lump in my neck, it has started spreading to adjoining lymph glands. However, it had only spread to one “network” of lymph glands next to the main lump (lymph gland). Hence, it was considered regional or stage 2 because it had only spread minimally, wasn’t in the bone, and was contained basically to the neck area.
The scan in october will serve to help understand if my cancer is spreading or not. All indicators is that it is not spreading. We’ll see, I vote for NOT!
The summary of the visit with the oncologist is that we will continue RICE regimen, perform it on 21 day cycles instead of 14 day cycled, PET scan in October, and otherwise, continue as we are.
My daughters and I came home and worked on transplant initiation. The goal has been to go to MD Anderson. Here’s the bottom line without all the explanation: my insurance will require me to pay $7,000 to $10,000 up front to get evaluated if I go to MD Anderson for a stem cell transplant.. The stem cell itself will be covered with full coverage, but the initial workup is poorly covered. Then the follow up medical tests will be poorly covered. No estimate was given of the out of pocket follow up tests. Welcome to the world of insurance games my friends.
Fortunately, we have a great second choice right in our backyard: UNT Health Science Center in Dallas. We contacted them Wednesday morning. My insurance is fully accepted by them and there will be no cost if the SCT is done this calendar year (met all out of pocket expenses). Plus, UNT is close to our home. The drive back and forth to MDA would have been a hardship. We have a peace about UNT and are going to start paperwork transfers to them today!
Then we sat back on my 50th birthday and enjoyed family. It was a simple affair with tons of great food and memories.
I have to say, my 50th birthday was very special. I received the greatest voice messages of singing songs and well wishes. My wife cooked the most amazing food and set the table with china that my mom got for her wedding gift in 1959.
It was beautiful. I had my family with me. My hopes are strong to beat this cancer. My colleagues at work made a video of birthday wishes that is just sublime (it is posted on my Facebook account).
I love and am loved. What more can I ask at this point?
To make it to 51!
Happy Birthday!! We are thinking of you and praying for you. We are glad you have some good options in spite of the situation. Love, Ronald & Bo ============================================================================ =