So far, it’s been a very good day even though it’s snowing again! Sabine took her new and second-round chemotherapy at UW Hospital this morning, the GHC lab received the fax order for Sabine’s blood work, and I finished up a telephone interview with Social Security for Sabine’s disability (which also went very well).
But let me tell you about yesterday… I tried to find out precisely what type of myeloma Sabine has. I know she has “lambda light chains” which caused her kidney’s to fail but what about the immunoglobulins I have been reading and hearing about?
So I tried to get the question answered I wasn’t able to get answered by calling the hematology clinic. Hmmm… well the IgG, A and M were all negative… “But what about the others – especially the IgD which is a rare and very deadly form of myeloma?” Nobody could tell me… I even emailed Sabine’s primary care physician yesterday and asked her to check for me as to what the medical record said. After all, there has to be a specific diagnosis -- especially after all these tests.
And so, last night during and after dialysis, my mind wandered, I kept waking up in near-panic state. Why aren’t they telling us the specifics? Is it that bad?
The angel appeared this morning. It was at the chemo clinic when Nurse Dawn appeared to give Sabine her infusion. “How are you guys doing?” she earnestly said. As so I told her about not getting the information I thought we should, about doctor and nurse being rushed last week, and what seems to be a lack of coordinating physical (scientific) medicine with emotional support which those of us going through cancer desperately need. Did she respond! She ran and checked the records and gave us this GOOD NEWS!
The cytoxan chemotherapy which we thought had not worked had – there had been a 1/3 reduction in the lambda light chains (cancer).
Sabine does not have a rare form of myeloma but what is called “Light Chain Disease” not involving the immunoglobulins (which I feared).
She also called the psychologist (Mark Heiland) who is assigned to the cancer clinic to help families and patients adjust and cope with the cancer diagnosis. He came in (we had met him once before when Sabine was an in-patient), we talked, and then set up two appointments that coincide with the next week’s chemotherapy.
Bit by bit, pieces of this train-wreck seem to be falling into place. Lisa, our complex case nurse called and left a message checking in with us to see that things were working for us. Hallelujah!
So that’s my story. And, I think Sabine will be dictating a note for me to put on the blog on her behalf in the coming days… (a good idea, Sue, thanks).
Whew… it’s time for a nap.