I'm falling even more in love with you
Letting go of all I've held on to
I'm standing here until you make me move
I'm hanging by a moment here with you
I'm living for the only thing I know
I'm running and not quite sure where to go
And I don't know what I'm diving into
Just hanging by a moment here with you
I was thinking earlier this week about this song. I have an intimate history with it. I'll try to explain that, but recently I heard it while I was still waiting for a rather major test result. When I first heard it some years ago, I thought it was a love song. It is a love song, but not between two people, but rather between a person and God.
We have been pressing for a kidney transplant since mid last year. After some discussion with the doctors, my kidney physician wrote a referral to the kidney transplant team at Duke University Hospital. Eventually they called me in for an initial evaluation on December 4, 2015.
The kidney transplant team had evaluated my case, and after much deliberation called me two months later. They decided that I would be listed on the transplant list if a new bone marrow sample tested negative. Like MRD negative. MRD testing (minimal residual disease) is fairly new, is extremely sensitive, and few labs around the world do it. Luckily, Duke is one.
This was mixed news, because it meant that my kidney transplant future, and really my MM status, hung in the balance. MRD testing is a high bar. I had one of these tests done about a year ago, a couple months after my stem cell transplant (SCT). It was negative at the time.
My MM-related blood numbers have been jumping around a bit lately, and so the MRD test was ordered: both for the purpose of the transplant and for determination of my MM status. For the MM, was I on the right treatment plan? That was the question.
Waiting is the hardest partWhoever said that was right.
When you need a test, and the test results will literally swing the course of your life, those results can't come fast enough. Part of you wants the results right away, but there is also fear; you'd rather not know. What if it's bad news?
This is part and parcel of the cancer battle. Riding this roller coaster of emotion, trying to not let yourself get too high or too low. I found the other skill of being secure in each day is necessary. It's difficult to do, but you have to.
This past week has been a long one, we scheduled the bone marrow biopsy, and waited for the result. The marrow was taken Monday, and the result available Thursday. It's a remarkable thing that it can come that fast. Except when you're waiting for it, it's not that fast. It's seemingly forever.
Like trying not to watch water while it heats to a boil, you wait. You find things to occupy your mind, but it's always on your mind, looming like your own personal D-Day. Again this is a lesson in control; or lack of it. You can't control anything about this, so why worry? That is the hard part.
Therefore do not worry about tomorrow, for tomorrow will worry about itself.Each day has enough trouble of its own.Matthew 6:34
Hanging by a MomentI heard this song Wednesday. I was feeling down, worn out by the wait; failing the "do not worry about tomorrow" part. It made me think, because some years ago, when I crossed that line between non-believer and believer, this song played a part.
Anyway, it was a welcome reminder of my faith, and not to lose it.
Thursday morning came, I hadn't gone to work yet, and I was sitting at the breakfast table with my wife. We didn't know when the result was coming. We heard "end of the week" or "early next week". My phone rang, and I recognized the prefix as being from Duke. I knew right then what was coming, and I answered the phone.
I heard her say some things on the other end, and ultimately she came to it. "...it's negative...this is a very good result." She said a couple more things, she'd notify the transplant team; I asked her to also notify my UNC oncologist.
I hung up the phone, and turned to my wife and said, "It's negative". We were overjoyed. We laughed and cried a while, then called my mom. The news propagated outward to my parents, my wife's parents, brother and sister, and so on.
It was a high bar, but we got over it.
This brings us to the next bar: kidney transplant eligibility. We've not yet heard back from them, as to whether they're actually going to put me on the list.
Once again, we're waiting, hanging by a moment. With You.