Journey to a Cure

I've been reluctant to post this final entry in my Journey to a Cure blog.   My journey began in October 2008 when I was diagnosed with chronic lymphocytic leukemia (CLL) during a routine physical.  Over the ensuing 14 year period, I've gone through 4 different treatment protocols and a stem cell transplant.  While I never let cancer define me, it consumed a lot of my time and energy over these 14 years.  To be honest, I rarely thought about life after cancer as it just didn't seem achievable.  Therein lies my reluctance, but I'm going to say it out loud for the first time - I'M CURED OF CANCER! Somebody pinch me, I must be dreaming. After my hospital stay for pneumonia in March 2022 and a case of the flu in May 2022, my health surprisingly took a positive turn in July of 2022.  During what had become a routine check up, my blood test results showed that I was starting to create my own white blood cells.  My immune system was finally coming back ...

Well the past 337 days have been relatively uneventful, until today where the next step in my journey begins with a chance that this will be the last big step.   But first a bit of catch up on these past 337 days... Since returning home to Colorado in late February 2021, I've been feeling well, returned to work and able to live a relatively normal life.  I say relatively since my immunocompromised state has me living with the added anxiety of getting sick from Covid or any other infection.   I returned to MD Anderson on February 15, 2022 for my 15 month post-transplant check up.  The results were great, with no sign of the cancer returning and my chimerism results showing >95% of the cells being from my donor.  This is a great indication since my original cells create the cancer whereas my donor cells do not.   The tricky part is that while the cancer has not returned, my full immune system recovery has not returned either.  This make...

 Hello Family and Friends, I hope this update finds you safe, happy and enjoying much more normalcy than last year.  It's been really exciting to start to get out and do things again and especially hear about all of you planning vacations, socializing, and generally back to normal.  On the health front, I continue to feel really well during which by all accounts is a successful yet slow recovery.  I'm no longer taking prednisone (steroid to treat my gout), tapered down to just a small dose of the immunosuppressant and on track to ween off a lot of the other meds over the next 6 months.  My blood counts in general are improving, with the exception of my white blood cell count which is still suppressed.  I've needed a monthly shot to boost production of my white blood cells. I had my 6 month checkup at MD Anderson at the end of April and the results are all very good.  No cancer in my blood, brain tumor or anywhere else for that matter.  My chimeris...

The days have been passing quickly without a lot of material to create this next post.  With my return to work, acceptance of my new reality of fluctuating blood counts, and an anonymous correspondence with my donor, it feels like a good time to send out this update. After being home from Houston for a little less than 3 weeks, getting caught up on doctor appointments and generally feeling well, on March 10th I returned to work. I am excited to again challenge myself, interact with my co-workers and catch up on all things technology.  As everyone continues to work remotely, the transition back has gone well and I am now working full time out of my home office. I've transitioned my regularly monitoring to the Stem Cell team at UCHealth in Denver. I'm fortunate to have such an expert team to guide me through this next phase of my recovery while collaborating with the transplant team at MD Anderson.  My counts have been fluctuating quite a bit over the past 4 weeks and I've ...

 “Country roads, take me home, to the place, I belong” We arrived in Houston on October 28, 2020 during the aftermath of Hurricane Zeta and finally left Houston on February 19, 2021 during the cleanup of the worst winter storm to hit Texas in decades.   That’s 114 days for those counting, like Connie and I.  The winter disaster in Texas was as crippling as you read - millions including us were out of power, heat, water and even internet for several full days.  Even the hospitals were closed for a full week, primarily due to a lack of running water.  Houston really showed it’s true colors with neighbors helping each other and even “Mattress Mack” opening his mattress showrooms to help those in need of a warm place to sleep. The big Day +100 milestone (from the donor cell transplant on November 6th) came and went as it was overshadowed by the winter disaster.  We had remained in Houston for a final blood test in order to leave with confidence that my White Bl...

The past couple weeks have been another rollercoaster ride for us down in Houston.   We had the expectation of returning to Colorado on February 11th.  We even met with our survivorship counselor in preparation to fly the MD Andersen nest.  She walked us through the timeline through the next 2 years including return trips to Houston, weening off medications, vaccinations, and transitioning care to my doctors in Colorado.   However two weeks ago, my white blood cell count started to decline.  After being in the 4s for the past 6 weeks, it ended last week on a downward trend to 0.7.  This is extremely low, at a point it hasn't been since late November while still in the hospital.   My doctor could not explain it but her hypothesis was either an infection or an autoimmune issue.  She describes my current state as “a battle raging between my original cells and the donor cells”.  I was given a Neupogen shot to encourage my bone marrow to produce m...

Hello friends and family, I hope everyone is having a fantastic start to the new year and optimistic that 2021 will be a much better year than 2020. Sitting here at Day +75, I am doing well overall.  My blood counts continue to fluctuate between a low and "close to normal" level.  I continue to be on way too many medications.  The exciting news is that Connie and I have a target date of February 10th for our return drive to Colorado. My doctor refers to the fluctuating blood counts and how I feel overall as "a battle raging between your original cells and the donor cells".  This is expected at this point with the recovery not expected to be a continual, straight line improvement.  There are constant ups and downs, with the overall trajectory looking very positive.  The +100 day mark is a key milestone since history shows that issues are most common during the first 100 days, but it is not uncommon for issues to arise in the first year, into year 2 and bey...

Happy New Years, It’s been a couple weeks since my last post, as it has been a mostly flat section of the process.  For the majority of December, I was fighting gout (big toes) and joint (knee) pain while my blood counts were steady but still below normal levels.  They find that joint pain post-SCT concentrates on prior problem areas.  In my case, that was centered on the right knee that took a beating over the years from skiing and running.  Knock on wood, but these issues are mostly under control as of the end of December and I’m happy to be recommencing my rehab.  My white blood cell count (and importantly ANC count) have stayed in the normal range for the majority of December, but the red blood cells and platelets continued to be well below normal.  Today, there was a good sign that these are both on an upward trend and I’m starting to feel it in the form of increasing energy. The news today is that I had my Central Venous Catheter line removed, marking...

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...