Tuesday, September 17, 2013

Watch and Wait, Enjoy This Time

Back to the hospital today.
We were promised the full result from FL's bone marrow test by today, but it was not available.  It will be another 3 weeks (8 October).

The Science bit:
They were able to tell us that his second bone marrow sample showed less evidence of leukemia than the first, but that: "on a spectrum that runs from myelodysplasia to acute leukemia he is somewhere in the medium to high risk end".
Reading the computer screen over the doctor's shoulder, I was able to read that they already know his results are consistent with him having Acute Myeloid Leukemia, but there were "no blasts" in his sample.  They await cytogenetic test results.

What this means:
As the doctor put it, he is currently "in a good place".  His recent blood transfusion has given him quite a boost and his body is slowly recovering from the 32 months of Lenalidamide treatment he received for Myeloma.  His Myeloma appears to be on a plateau, and the benefits of further treatment are heavily outweighed by the need to improve his general health and quality of life.  And of course, we now have a new diagnosis to deal with.
Once they have the cytogenetic results, they will be able to assess what (if anything) can be done to tackle the leukemia.  But for now, the doctor says we must:  "Watch and wait.  Enjoy this time!"
You can't argue with that, can you?

And how is he?
Variable.  He is taking a lot more painkillers than before, but we are talking about paracetamol here, nothing stronger, and he is probably only taking 4 or 5 in 24 hours.
He is getting a lot of "electric shocks" in unpredictable places.
His feet and legs are very uncomfortable.  They did an ultrasound test on his right leg today to check for a blood clot, because it is quite swollen, but found nothing.
He can only walk a very short distance before becoming breathless.  Maybe 100 yards?
But despite this catalogue of woes, he is full of energy for his writing.  It is flowing a lot better now that he is on an even keel and doesn't have to deal with Dexy Days anymore.
Did I mention that he is almost drug free now?  Imagine that!  After almost 7 years of chemotherapy of one sort or another, his only medications are paracetamol, bone-strengthening pills and asthma inhalers.
So we are following doctor's orders.
Watch and wait.
Enjoy this time!


MaryinTN said...

Glad FL is feeling a little better and not taking as many medications. Very sorry about the leukemia. The doctors advice is good---I think we all need to enjoy this time more. Can he try Epsom salts to decrease the swelling in his feet/legs or would that interfere with his other medications?

unlabelled clothes said...

Aw, such a great philosophy for life in general - "Watch and wait. Enjoy this time!". Big hug.

Donna Hensley said...

Sending you a blast of encouragement. Glad to hear that his writing is flowing well again :)

Ms Goodenough said...

I am uplifted by your coping, warmth and attitudes. That FL worried until the harvest was home despite his medical news describes a very grounded outlook. That you understand him makes me think yours a very special relationship. I'm sure you both will know how to enjoy this time.