Usually when I post on my blog, i have at least reviewed it several times, maybe even sat with a piece overnight to make sure it is appropriate. (Whatever that means.) But now I am free writing. I do this for myself. Not for you.
Monday Judith began her outpatient stem cell transplant (auto) for Multiple Myeloma at Stanford. Why she made that decision and what she hopes for are another story. (see her caring bridge site) We rented a furnished apartment, organized 3 caregivers and a back up. We were prepared. I was one of the 24/7 caregivers going to do half the week each week for a month, at least. This was something we planned for a long time.
Boom, Monday morning I fear I might have a virus: low grade fever, a little drip, a mouth sore. We decide to send me home. In my sick bed I call and renegotiate times and coverage. One of our back ups isn’t available. Another of the three is sick. We call upon two or three others who show up. We piece together good care. The angels came to the rescue.
Boom, on Thursday, the third on our team went down with a bad cold. I cried like a baby, wailing, the thought of Judith without her original team, and for her to even think about the plan. I hated not getting to be together. I got reports, did some facetime, called in during chemo and stem cell delivery and offered song, but i felt far away. i wasn’t very sick, but it wasn’t the time to push it. With her white blood cells going down, we had to be meticulous not exposing her to any even possible virus.
By Wednesday Judith was sick with RSV and by Sunday she was asthmatic. I arrived on Monday (A week later finally with no more symptoms) and now I am here. Reassured to be together, but still being very careful. It seems everywhere we look someone is sick, so we decide no touching and lots of handwashing.
The truth is, i think it’s harder for me to be here than to be at home staring at the walls, binge watching Nurse Jackie from the beginning checking my temperature every hour, worrying about her. It’s harder to hear her gasping for air, afraid we might have to go into the ER, trying to sleep with one ear awake.
When I was home and not with her, I thought otherwise and I felt tortured. Now that I am her caregiver and her white blood cells have disappeared, the enormity of the journey she is on and her vulnerability could be overwhelming if I don’t remember our mantra.
LBT. Let’s breathe together. And then, i remember that this too shall pass, one way or the other….