I think this will be the last entry into the blog. And I realized that I need to be gentle in its closing.
Not everyone who read this was interested in just me and Ann as people. Some have come to this blog just like we did to others. In a search to find someone who beat the odds. Fought the cancer and won. Someone who walked between the all the rain drops.
They like Ann and I (we are still a team) maybe facing a bone marrow transplant to try and cure a blood cancer and are looking now at these last posts with a mixture of despair and horror. Please realize that your experience doesn't have to mirror ours, in the sense that despite our best efforts we stepped on almost every landmine that Ann's biology could think of.
ALL t(4;11) - one of the worst varieties of acute leukemia. Got it check.
Post transplant Lymphopliferative Disease (PTLD) - A rare complication. Got it Check.
Late GvHD of the lungs - Another rare late term complication. Got that one too...Check.
Squamous Cell Carcinoma of the Tongue - Another complication. Check.
Squamous metastasis going undetected because of fluid retention from steroids - Check.
Squamous metastasis to the spine - very rare. Accounted for.
So as I am now speaking to the hypothetical transplant patient, You, odds are you will not have all of these complications. You might have some, or a few, but in the struggle Ann and I fought through we found the deck stacked against us time and again. Chances are if there was a 'poor' patient population to fall into we were either in it or on the boarder of it.
What I am trying to say to you Mr. or Ms. hypothetical transplant patient is that, Ann and I had very few breaks, but we obeyed protocols, said infection free, and educated ourselves about medicine, oncology, hematology, transplants, and the human body. Enough so that we could take a proactive stance in our care, not just accept things on face value. We empowered ourselves.
And like so many people are telling me today, we didn't fail, we brought 8 precious years worth of friends, pets, lazy Sundays, late night movies, grocery trips, birthdays, gardening, reading, snarky jokes, love making, studying, learning, listening to music,making friends, special dinners, meeting her donor and so many other things, but most of all dreaming. in short it brought us 8 years of joy.
When Ann was diagnosed all those many years ago at 32, she would say to me, "I just want to live to my 40th birthday". Well, we did and could we have done anything better? Sure. But we didn't live life like it was going to end on a schedule. We lived it like everyone else does - one day at a time focused on what you need to to stay 'normal' when you have been touched by cancer.
My message is simple Mr. or Ms. hypothetical transplant patient. Don't give up on yourself because Ann has died. Go back and look at all the things she accomplished because she never quit even when the odds ran against her. She made the most of her life despite the obstacles biology placed in her path.
Never give up and yourself and don't give into despair. Ann never did and always tried to make her life one worth living.
Try - you might do better than her.
I did say this will be the last entry into the blog, but there may be one more. We will have to see...it depends on how much strength I can muster.