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| Boris the tortoise in the garden with Onosma |
The past few weeks have been mentally challenging. Facing a decision that
severely affects not only my life, but the lives of my loved ones, has probably
been one of the hardest times I’ve gone through in my recent adult life. I have
the option of getting a bone marrow transplant that could possibly offer a
cure, or I could wait it out on the current regimen of drugs and hope for
remission at some level. I’ve recently switched hematologists to Dr. Steven
Schuster who studied at the Mayo Clinic and is a blood cancer specialist. He works
incredibly closely with my Colorado Blood Cancer Institute specialist, Dr. Luke
Mountjoy, also from the Mayo Clinic. Dr. Mountjoy encouraged us to look seriously
at getting the transplant because he feels that aplastic anemia patients,
especially those in decent physical shape, have an excellent chance of success,
even at my age. Joel and I have spent hours and hours reading the documents
supplied by CBCI on allogenic transplants, and we’ve combed the internet. I’ve
joined three fabulous facebook groups: the Bone Marrow and Stem Cell Transplant
Support Group, the Aplastic Anemia and MDS International Foundation group, and the Aplastic Anemia Trust Support Group (the British are
absolutely lovely people when it comes to positivity and support!) and had long
conversations with a new friend who just celebrated her first “re-birth day”
following a transplant a year ago in New York. After weighing hundreds of
factors, I’ve made the decision NOT to have the transplant. Thankfully, both Joel and Dr.
Schuster completely support my decision, and I feel I have a rock star medical
support team now that will guide me through the coming months with skill,
compassion and common sense.
Having the transplant would mean that they completely wipe out your entire
bone marrow and immune system and replace it with (in my case) an unrelated
donor’s bone marrow. Over time, your chromosomes and blood type change to that
of the donor’s. You lose ALL immunities from your previous life, and have to
live in a sanitary, nearly solitary world for the first full year. It entails a
30-day hospitalization followed by another two months living in a rental home
or hotel that’s within 20 miles of the transplant center (Presbyterian/St. Luke’s,
Denver). Graft vs host disease (GVHD) is a constant threat from day 1, and can
affect your skin, eyes, gut, and other organs, often requiring additional
hospitalizations. GVHD can show up at any time – even many years later. During this
first year, you can’t go out into public places, and your living surroundings
have to be kept pathogen free. Your diet is often restricted, and your blood
levels and vitals are regularly monitored. And you CANNOT do any gardening or
be around plants of ANY kind – even indoors. (Do you know how many toxins and
pathogens live in soil? Soil is filled with pathogens that cause botulism, tetanus, leprosy, E-coli,
salmonella, Legionnaire’s disease, histoplasmosis, blastomycosis, sporotrichosis,
coccidioidomycosis, and more, that can be lethal [especially to the immunocompromised] and are transferred through
contact or inhalation of soil particles. Even now I wear a mask and gloves when doing any
gardening at all.)
At about your one-year mark you start receiving your childhood
immunizations again, followed by your adult immunizations (again). During year two
you can start getting out and about but with extreme safety protocols as it
takes about two years for the donor’s marrow to completely integrate with your
own body systems.
Having a transplant would mean that 90% of daily household tasks would
fall to Joel for the first year – cleaning, shopping, caring for the pets,
pasture and lawn mowing, and keeping up with ALL the gardens. Amazingly enough (not really if you know Joel), he was 100% on board with whatever it would take. Love that man! It would mean
selling our house in New Mexico (which is even in a more remote, rural area).
It would mean 3 months of living in Denver away from our home, it would mean
avoiding exposure to any kind of pathogen, and an incredible regimen of blood
tests, medications, monitoring, and overall complete degradation of the outdoor
lifestyle that we currently enjoy.
After meeting with Dr. Schuster this week going over graphs and charts, blood
test results, and discussing the options, he felt that my decision was a sound
one, and that given time, things would continue to slowly improve, hopefully by
fall or winter. I will never be back to where I was physically (but hell – I’m turning
67 next week. Let’s be honest, I’ll NEVER be back to where I was!) He said that
very likely this disease was slow to come on and is just as likely to be slow
to go into remission. He said I am likely to go through recovery like a
tortoise, slow and steady. He did NOT know that one of our favorite pets is a
Russian tortoise named Boris (we've had him 24 years), one that is so long-lived that he’s in our will for our son
Jay to take care of once we’re gone. Boris is patient, has a great personality,
loves taking walks outside, and was “Pet of the Month” at Jay’s apartment
complex in Westminster.
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| Boris was chosen May's "Pet of the Month" at Covell apartments at the Promenade in Westminster. |
Other good news – I’m down to weekly blood draws and monthly doctor
visits, we’re heading to Capitan next week for 10 days, the garden is gorgeous,
and the weather is stunning. All good things!
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| Our hottest, driest garden in nearly full bloom- May 18, 2024 |
So - this is where we are. We feel good about the decision - it's the right one for us, and we are forever grateful for all our supportive friends and family who helped us get to this point.
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| Click to hear The Lumineers' "Where We Are" |
