Journey to a Cure

I had what I’m calling a progress report yesterday with the transplant doctor and team, and couldn’t be happier with the report. The bone marrow aspiration showed no trace of leukemia.  This test measures the number cancer cells out of 10,000 and the result was a perfect zero.  The Chimerism test to determine the % of donor vs. original cells was a conclusive 100% donor which means the engraftment process is moving right along.  I continue to go in for twice weekly check ups at MD Anderson as I continue to progress through the key first 100 day post transplant period and monitor for infection or symptoms of GVHD. Merry Christmas All, Gary

Last week brought a couple of challenges.  The combination of high blood pressure and gout made for a slow week.  High Blood pressure is a common side affect from the anti-donor rejection med tacrolimus.  The Gout attack was a side effect from the chemo which breaks down the urate crystals in your body into Uric acid which goes directly to the colder big toe part of the body.  I had not idea how painful and debilitating gout can be, but now I appreciate what others go through.  Once again it was medicine to the rescue and those issues are now mostly under control. I have only needed platelets once and have not needed a whole blood transfusion over 10 days while my counts continue to improve.   This means my body is working.   I had a couple of key tests this week to measure the progress. First is a bone marrow biopsy to determine if there is any remaining cells with leukemia.  The second is a blood test, called Chimerism, to determine the percenta...

When we checked into the hospital on Halloween day, we understood it would be a lengthy stay.  The discharge date was based upon how quickly the engraftment process progressed, and specifically based upon blood count levels.  Our mantra has continued to be “one day at a time”. Monday November 30 is that magical milestone discharge date, with our hospital stay ending at an even 30 days.  Over the past week, my WBC count has increased steadily from 0.1 last Monday, 0.3 on Thursday, 0.9 on Saturday,  1.5 on Sunday and 3.1 today!  It’s impossible to describe how much better an improving WBC count makes me feel both physically and emotionally.  I couldn’t be more excited to breathe some fresh air, sleep in an actual bed and eat some home cooking.  Our next stop is to move into the nearby apartment we rented for the next 60 days or so. Upon discharge, I’ll continue to return daily to MD Anderson but rather than to the hospital I’ll be an outpatient visiting ...

The MD Anderson blood testing process is a factory.  When you go in for a blood draw, there is a bank of over 50 stations ready to draw your blood.  Combined with all the test requests from the hospital rooms like mine, from the buildings full of clinics, blood donations,... it’s amazing they can turn around results within an hour.    Yesterday (Day +17), they had a technical issue that backed up this process and had to redraw my blood late in the afternoon.   This turned out to be a godsend as the result was a White Blood Cell (WBC) count of 0.1.  This result, repeated and confirmed this morning, means I currently have 100 WBCs per liter of blood.  The average person walks around with 5 liters of blood and within the normal range of 5-10 thousand WBCs per liter.  So, I have around 500 white blood cells on the way to a normal level of over 25,000. It’s not much, but something to build upon.  And most importantly, it means the engraftment proc...

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...