Monday, May 4, 2009

a day in the life . . .

DICTATION:

Now, a mere 96 hours later, with my unwelcome assistance and from the same location we last reported (this is Casey, Sally's sister-in-law and "caregiver extraordinaire" - I'm just writing what she tells me) Sally is attempting to be directly involved in communications with the "outside world" for the first time in a long time. Knowing Sally, there are both pros and cons to this. What she is most interested in me writing is her gratitude and love for your kindnesses, love, and prayers, all of which seem truly never-ending. Sally doesn't feel that there is any way these 58 post-transplant days would have been bearable without your support, although she has quite literally no idea how to express to you how much she desires to speak with each of you and hear about YOUR lives and the things she is missing, and the stories that you have to tell.

"In an undefinable way, each day is literally taking all of my energy and focus just to be me. I hope to one day be able to explain that better, because I do feel that it makes me seem uninterested in or ungrateful for the way you have all kept me in your thoughts. What you must know is that it requires every bit of my physical strength to focus on getting through another twenty-four hours, or another six hours, or another one hour . . . my days and nights are schedules: medications, i.v. bags, clinic appointments, a pipe-dream grocery run - and then finding out what new emergency has emerged to trump all of that careful planning. It makes one have a new appreciation for the solid foundations on which a relationship must be built, to make up for times like these when nothing can be done to maintain it. I wonder about the lives you are all leading, yet I am unable, at this point in my recovery, to dedicate the time and energy such unique and wonderful people deserve, and I trust with all my heart that you will understand this and forgive my lack of communication."

So, back to logistics (still dictating): still in the hospital, and anticipating at least a few more days. As time goes on, we are learning more and more about all the side effects a bone marrow transplant can cause, from big daddy GVHD to CMV to all the . New test results should be in tomorrow, which will determine which procedure, medication, or protocol comes next. This seems to be fairly par for the course in post-transplant land.

The shining glory of these recent weeks was the visit from my guys - Craig and the boys - this past weekend. While not the visit none of us had planned - surprise, Craig! You're spending the weekend in Seattle! - let's just say that having small children visit a patient in isolation is a complicated affair. They do not make child-size masks, gloves, or gowns. We did not take photos.

We had planned a weekend at the home-away-from-home, with visits to the park, pancakes on Sunday morning, and lots of mommy and son time. Craig expected a break and some time to fish. Even though this hospital visit threw all those plans to the wind, my boys packed up and headed West, and made the best of the situation. We managed to spend some quality - if brief - time together, and it was a boost to us all to share even that, though the ache of being separated from one's children is never really relieved. I hope some day to be able to find the words to describe this hole in my heart, which, like some of the things I mentioned earlier, is far too deep and painful to be expressed with any words I can think of now.

I think that the Mariners' game which Craig and the boys attended thanks to tickets which were donated to the Pete Gross House - and which featured the boys' first-ever live home run - may have helped make up for missing out on fishing . . . . . it was also the first time this half of the family had been able to all get together outside of Spokane - normally we (Angie, Jim, Casey, Belinda, Craig, Sally, and boys) all meet up at 6012 S. Smith for Christmas and July 4th. As a thank-you for the act of love which was putting her life and work on hold in Mexico for over a month to be part of my team Sally flew in my mother (now it's Casey talking), which means this "caregiver extraordinaire" (again, I'm just writing what she tells me) got to spend some quality time with HER mommy, too. Grandma and grandkids, aunts and nephews, brothers and sisters, mothers and children, husbands and wives . . . it was a weekend of reunions which were all too short, but not the less welcome for it.

Much love,
Sally

3 comments:

Anonymous said...

Dear Sally...while none of us can ever imagine how it is to be in your shoes I can totally feel in my heart your warm words as a Mother how you must ache to be with your children and as a wife long to spend time with your husband like you used to. I appreciate your desire to be with friends and family, my prayers have been and will continue to be that your recovery is strong and steady so all this will come true soon. Hugs to you and your family. Debb W. :~)

Paul S. said...

Hello Sally and Casey,

It was great to hear that the family was in town recently. Next time call me and I'll buzz down and hang with da boys!
Remember, I am just a call away when you feel up to doing something. We really enjoyed our visit a couple of Sundays ago. You are amazing!
Gina and I are headed over to Spokane this coming weekend, leaving Friday am., so if you need me to take or bring anything back just email or call me. We'll be back in Seattle on Mother's Day.

Paul S.
509-939-0435

annemcgonigle1 said...

Sally --

You're an absolutely amazing person. Truly.

I am so so sorry you have to go through this living hell.

You & your boys are in my thoughts and prayers daily.

Anne McGonigle