Journey to a Cure

The past week has been tough as I manage the side affects of all the chemotherapy and as the donor cell engraftment process continues.  If you’ve had the unfortunate experience of chemotherapy, you can relate to the fatigue, nausea, hair loss, digestive issues and other side affects.  This is just much worse due to the intensity of the chemotherapy given over a short period of time.  But, the nurses here are absolutely amazing and know how to help you get through it all. Most importantly, all signs are that I'm on schedule and the process continues to progress as planned.   My white blood cell count went to 0.0 on day +6 and has remained there since.  When this count begins to increase, the side affects should lessen.  My platelet count is also low.  Since I had the craniotomy just prior to the transplant, I have an increased risk of serious bleeding.  They are keeping the platelets at a safe level of above 30 which requires almost daily platelet ...

Today is Day 4, the 4th day since my donor cells were transplanted with the goal of replacing my immune system with that of the donor. The immune system is a complex system consisting primarily of infection fighting white blood cells, oxygen carrying red blood cells, and blood clotting platelets.  These cells are generated from the stem cells in your bone marrow.  There is a normal lifecycle of these cells, with literally millions of new ones created every day while older ones die out.  With my cancer (CLL),  the cancerous white blood cells do not go through this normal lifecycle and instead persist. There are so many intricacies to the immune system that I will never understand which is why I’ve put my complete trust in the doctors and the amazing process they created. While the pre-chemo regime brought my (old) cell counts down to a low level, it does not completely remove all of the old cells.  So the past two days included another chemo regime to remov...

Yesterday, November 6, 2020 was Day 0, the day that my donor’s stem cells were infused. This is obviously a BIG day for me which is affectionately referred to as my new birthday.  Given all the preparation and planning, the process was somewhat anticlimactic.  It was simply a 30 minute infusion of the donor cells through my Central Venous Catheter (CVC) line. I’m actually feeling pretty well, other than bad fatigue and nausea.  I’m told that the next 2 weeks are typically the most difficult since the cumulative affects of the chemotherapy kick in and my blood counts will continue to drop to near zero as my old immune system is replaced. At this point, there is a few day pause in the process (until Day+3).   They are constantly monitoring my vitals and blood counts, and based upon that give infusions to replace electrolytes along with preventative meds to protect my organs and against infections. Gary

As I started exploring the details of the stem cell transplant, the first couple decisions were “where to have the procedure” and “the best option for donor stem cells”. The decision on which hospital came down to a few key considerations:  being home or away, the statistics on outcomes for each hospital, and the transplant process used.  MD Anderson does a large number of transplants, has top ranked outcomes, and the team there very quickly earned my confidence. I had already trusted Dr. Thompson at MDA as my CLL specialist and he works very closely with my transplant doctor Dr. Shpall.  The combination gave me confidence that I’ll be in good hands.   The type of transplant is called Allogenic, meaning from a donor.  My disease would not allow for an Autologous transplant (from my own cells).  After testing my amazing siblings Julie and Dan for a match, they both tested as 1/2 match.  Each child gets 1/2 of the matching antigens from each of their par...

We arrived in Houston on Wednesday afternoon (October 28) after a white knuckle drive from Denver.  The combination of ice packed roads in Colorado / New Mexico and torrential rain in Texas turned the 15 hour drive into over 18. Following another negative COVID test and consultations with my leukemia and transplant doctors, the time had come to check to the hospital.  On Halloween, three weeks later than originally planned, I was admitted to the hospital.  Since there wasn’t a specific check in time and this first day was “hydration day”, we decided to have a couple beers, watch some college football in the hotel and check in later in the evening.  The hospital room is very nice, with a separate pull out bed for Connie, a window with a view of the old Houston Astrodome and new NRG Stadium, and plenty of room for our stuff.  And we brought plenty of stuff including lots of food and our coffee making set up.  I have the vision, call it hope, that I will be on...

The official pathology report is as good as I could possibly hope for.  The tumor was a benign grade 1 Gangliocytoma measuring 11mm x 6.6mm (or about 1/2 in x 1/4 in) in the right frontal lobe.  The doctor reiterated that this is very small and had it not been for the upcoming transplant, they would have just monitored its growth over time before taking any action.  But this still comes as a big relief that it wasn't more serious. They removed it entirely and my next step will be a brain MRI in about 6 months which will hopefully end this part of the journey. I can’t express how fortunate I am to have such great and caring women in my life.  Connie for her unwavering support and always looking out for my best interest.  Tara our daughter and family PA (in process) for her always calm and cheerful demeanor, telling me the story of Phineas Gage, and who believe it or not has medical experience with craniotomies.  And my sister Julie for always being there f...

When we found out about the 3 week delay in the transplant process due to the tumor removal surgery, we started thinking about how nice it would be to recuperate at home rather than in a hotel room or Airbnb.  Connie made it happen for us, including doing all 15 hours of the driving back to Colorado.  It was a lot for just 8 nights at home but well worth it to eat well, sleep well, and have our dog Goose with us.  We’ve been home since October 19 and the plan is to leave on the 27th to resume the transplant process.  If all goes as expected, I’ll be admitted to the hospital on Halloween day. I’m feeling remarkably well and have gradually begun doing longer walks here in colorful Colorado.  I have no post surgery symptoms other than a minor headache and a large Frankenstein scar across my forehead.   I’m still awaiting the final pathology for the tumor, but as mentioned before, the “quick test” showed no cancer which is a very positive sign. Cheers, Gary

On October 14, I had the surgical procedure, called a craniotomy, to remove the tumor.   Based upon the brain MRI on Monday, the tumor was not in the brain, but in and around the skull.  This is a serious surgery to take out a piece of the skull, scoop out the growth, then screw the skull piece back into place.  It required a 3 day stay in the hospital. To simplify, the doctor described 3 possible outcomes;  a benign tumor, a malignant tumor related to my CLL, or a malignant tumor unrelated to my CLL.  This was the order of severity since No cancer is always the best, the transplant would likely address the issue if related to CLL, but a new cancer would present a brand new major challenge. On the positive side, I didn’t have symptoms of the tumor putting pressure on the brain such as headaches, dizziness, or cognitive issues.  And it was small, about the size of your smallest fingernail.  In fact, the doctor said if not for the pending transplant he w...

Last week was a long series of tests to confirm that I’m fit for the transplant.  I had done some of these tests back in February but they needed to be confirmed. The testing included an Electrocardiogram, Echo cardiogram, PET and CT scans, pulmonary (breathing) tests, bone marrow biopsy, and several blood tests.  I call this battery of testing the ultimate physical exam, literally checking that every bodily function is healthy.  At the end of the week, I was to be admitted to the hospital to begin the actual transplant process. However, week 1 ended with the first bump in the road.  All of the tests were perfect with one big exception.  The PET scan, which identifies cancer or tumors anywhere in the body, identified a tumor on the right side of my forehead.  Unfortunately, the scan can not determine if the tumor is cancerous or how quickly it may be growing.  This was definitely bad news and at a minimum will delay the transplant process.  The co...

In prior posts, I’ve referred to the “process” of the bone marrow transplant.  And quite the complex, multiple step and lengthy process it is. The first step is to repeat a series of outpatient tests to confirm that I’m fit for the transplant.  This is ongoing for the week of October 5th at MD Anderson.  At the end of this testing, I will get a central venous line (CVC) inserted for the next steps and ultimately the donor stem cell infusion. I’ll check into the hospital on October 10 to begin the second step which is referred to as “conditioning”.  This involves chemotherapy to bring your immune system to zero in order to prepare for its replacement with the donor’s immune system.   During this time, the donor will be going through a procedure called Apheresis to harvest his stem cells from his peripheral blood. The cells will be cryogenically frozen and transported to MD Anderson.  The donor cells were collected on October 7 and now on the way to Houston. ...

Our last move was in 2001 when we moved from California to Colorado.  I called it our family adventure and what an exciting time it was.  The kids were ages 5 & 2, and we were moving to an area with endless opportunities for exploring new areas, great schools, and more affordable cost of living. This move is different in so many ways.  It's a temporary move with just Connie and I moving, and a health care adventure, not a family adventure.  But at the same time, I find myself excited for this new adventure.  Our original plan was to live in an urban environment in Houston.  Being suburbanites our entire lives, we were planning to live in a high rise apartment with nice views over Rice University and downtown Houston.  This is where the pandemic disrupted our plans yet again as elevators were deemed too high a risk of infection for my suppressed immune system during the critical recovery period. So we pivoted.  Connie pivoted I should say and w...

Greetings, My decision to proceed with a bone marrow transplant (also referred to as a BMT, a stem cell transplant or SCT) has been a multi-year process. And very difficult since it is such a high risk, high reward decision.  It is a potential cure, but is a long and difficult process with potentially serious complications. Bone Marrow Transplant was the original term for the procedure where the donor stem cells were harvested from the donor's bone marrow which is a long and painful process.  The more common approach today is to harvest the stem cells from the donor's peripheral blood. I’ve been extremely fortunate in many ways - having an amazing team of doctors, very effective treatments for over a decade, and an incredibly strong support system.  I’ve entrusted my medical advice to the MD Anderson cancer center team in Houston working hand in hand with an expert team at University of Colorado Health in Denver. Based upon very sophisticated genetic testing and monito...