Journal entry by Sam Maniar —
It's hard to believe that my last post was 7.5 months ago, and it's even harder to believe that we have achieved a sense of normalcy. If there was one comment that we heard consistently after sending out holiday cards this year, it was how glad people were that we were doing "normal" things and that there was no mention of cancer whatsoever. And while the fear is always lurking in the background somewhere, we are able to forget about it most of the time. We once thought about days since remission, days since transplant, and days since transfusions. Now, we are in the unbelievable stage of YEARS. It has been 4.5 years since diagnosis, 3.5 years since stem cell transplant, and nearly a year without leukemia meds. Remarkably, the otherwise healthy Theresa who was initially given a 30% chance to survive, the one who went through countless rounds of chemo and hospital stays, the one who was told that 10% of patients don't survive the stem cell transplant--and for those who do, many cannot return to work...is leaving leukemia in the rearview mirror.
We have had some rough times as of late, but we have managed. Theresa's dad had a pretty bad stroke while we were in Italy, and all of his speech has yet to come back. The good that has come out of it, though, has been more time spent with family as a result. Oh, and we got to go to Italy! And as I type this, the family that somehow has avoided COVID for years, has been struck. Of course it had to be Theresa! She is managing okay, and the blessing there is that her once brand-new, infant immune system seems to be working well. We are grateful for that, and we are grateful that she is now immunized against all the things we worried about for our babies. She had to repeat all of those childhood vaccines from polio to MMR, but her body has handled it well.
Besides the COVID, the latest hurdle has been some damage to Theresa's lungs and/or heart. Over the past few months, she has undergone tests and met with specialists to figure out what is going on and how to improve things. In a nutshell, her ejection fraction is not what it used to be. While my "honorary medical degree" is in blood cancers, my understanding is that EF is a measure of how much blood is pumped with each heartbeat. It is well-known that the chemo drugs she needed to take can cause permanent damage to the heart, lungs, and other organs, so we have been quite concerned. It's also possible that the symptoms are related to graft vs. host disease--a complication from the stem cell transplant.
With the help of some friends, Theresa was able to see some top-notch physicians rather quickly. (What a blessing it is to have such amazing friends!) I will skip all the ups and downs from the past few months and simply state that we are fairly certain that (1) it is not GVHD, (2) her heart seems to be okay, and (3) the lungs are likely still recovering from all that stress of the past few years. So, we are grateful for this news as well. Of course, it means more meds (which Theresa despises), more tests, and more money...but thanks to great insurance and all the money people donated to us, we don't have to worry about either. More blessings!
Have a wonderful end of 2023, and here's to the best year yet in 2024! Hope to see soon!
We have had some rough times as of late, but we have managed. Theresa's dad had a pretty bad stroke while we were in Italy, and all of his speech has yet to come back. The good that has come out of it, though, has been more time spent with family as a result. Oh, and we got to go to Italy! And as I type this, the family that somehow has avoided COVID for years, has been struck. Of course it had to be Theresa! She is managing okay, and the blessing there is that her once brand-new, infant immune system seems to be working well. We are grateful for that, and we are grateful that she is now immunized against all the things we worried about for our babies. She had to repeat all of those childhood vaccines from polio to MMR, but her body has handled it well.
Besides the COVID, the latest hurdle has been some damage to Theresa's lungs and/or heart. Over the past few months, she has undergone tests and met with specialists to figure out what is going on and how to improve things. In a nutshell, her ejection fraction is not what it used to be. While my "honorary medical degree" is in blood cancers, my understanding is that EF is a measure of how much blood is pumped with each heartbeat. It is well-known that the chemo drugs she needed to take can cause permanent damage to the heart, lungs, and other organs, so we have been quite concerned. It's also possible that the symptoms are related to graft vs. host disease--a complication from the stem cell transplant.
With the help of some friends, Theresa was able to see some top-notch physicians rather quickly. (What a blessing it is to have such amazing friends!) I will skip all the ups and downs from the past few months and simply state that we are fairly certain that (1) it is not GVHD, (2) her heart seems to be okay, and (3) the lungs are likely still recovering from all that stress of the past few years. So, we are grateful for this news as well. Of course, it means more meds (which Theresa despises), more tests, and more money...but thanks to great insurance and all the money people donated to us, we don't have to worry about either. More blessings!
Have a wonderful end of 2023, and here's to the best year yet in 2024! Hope to see soon!
I had the blessings, a moment of peace even when the night ends,
Yeah, the blessings, can we meet? Can we meet again,
At the crossroads of disaster and the imperfect smile,
With the angel in the streetlamp that blinks on as I walk on a mile, the blessings.
Yeah, the blessings, can we meet? Can we meet again,
At the crossroads of disaster and the imperfect smile,
With the angel in the streetlamp that blinks on as I walk on a mile, the blessings.
And the best ones were the ones I got to keep as I grew strong,
And the days that opened up until my whole life could belong,
And now I'm getting the answers, when I don't need them anymore,
I'm finding the pictures, and I finally know what I kept them for,
I remember, I can see them, see them smiling, see them stuck,
See them try, I wish them luck and all the blessings.
And the days that opened up until my whole life could belong,
And now I'm getting the answers, when I don't need them anymore,
I'm finding the pictures, and I finally know what I kept them for,
I remember, I can see them, see them smiling, see them stuck,
See them try, I wish them luck and all the blessings.
I was fast asleep at three in the morning when I got the payphone call,
And she said, "Did I wake you up, " I said, "Hey, no, not at all."
And she said, "I got this suitcase and I don't know what to pack, "
And I said, "You can take anything you want, just wait and see,
It's not a release, not a reward, it's the blessings,
Its the gift of what you notice more, "
And I walked out and I watched her kick the big pile of the night,
And we sat down and we waited for that strange and empty light.
Yeah the blessings
And she said, "Did I wake you up, " I said, "Hey, no, not at all."
And she said, "I got this suitcase and I don't know what to pack, "
And I said, "You can take anything you want, just wait and see,
It's not a release, not a reward, it's the blessings,
Its the gift of what you notice more, "
And I walked out and I watched her kick the big pile of the night,
And we sat down and we waited for that strange and empty light.
Yeah the blessings
See them smiling, see them stuck,
See them try, I wish them luck and all the blessings.
-The Blessings, Dar Williams
See them try, I wish them luck and all the blessings.
-The Blessings, Dar Williams
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