Thursday, December 8, 2016

Malawi and Halwani

Dr. Halwani at Huntsman Cancer Institute concurred with the direction we are currently going with LDS Hospital, which is: take a step back, get off the meds and wait. If I felt fine before I will probably feel fine again in a few weeks when the meds wear off.

We stopped at Malawi Pizza for a late lunch on the way home. I get Malawi and Halwani mixed up. One is African and the other Hawaiin!

Ed is also exhausted tonight, but has been my rock through this 4 week ordeal. (Seven weeks if you count the broken wrist).

He spent the morning sorting my pills back into bottles.

There are only three left standing, and one is a vitamin D!

Ed has filled out all my paperwork in seven hospitals:

American Fork
Timpanogas Regional in Orem
Mountain Point in Lehi
LDS Hospital in SLC
Mercy in Iowa City
Huntsman Cancer Institute in SLC

That is so painful, and I appreciate him doing it for me. He ALMOST has my social security number memorized. I think that is good. I've known his by memory for 35 years now!

He has also been a semi-physical therapist, encouraging me to not give in to the urge to walk hunched over, protecting both my withered arms.

I'm doing some therapy by myself on the wrist (until I can get in with a real therapist next week) and applying a heating pad to the point of insertion of the PICC line on the soft flesh of my upper right arm. But, I can actually feel the ghost of the PICC line up the arm and into the chest! I imagine time rather than therapy will heal that wound!

Ed calls me his T-Rex!

Dr, Halwani stood by his pathologist at the University of Utah and his report of BPLL, but was interested in seeing the new report from Mass General when it comes in. He also said even if I had BPLL he would probably treat it as a form of CLL and monitor it. If I was feeling fine he would just have me have  labs drawn more often than a regular CLL patient.

He also said that although I am atypical, that doesn't mean much. They would just watch and see. Maybe no treatment is the best option. And if I am treated, perhaps a "novel agent" like Ibrutinib, might do the trick. It is not chemo and has no chemo side effects. You just take a pill at home! He said my good health was an indicator of how they would treat it!

I felt happy enough that I ate two of the yummy sugar/gingerbread cookies the Young Women brought over last night! Apparently, my appetite is the first thing to come back as the medicine wears off!

I'm excited, looking forward to feeling good enough by Christmas to enjoy the time with with my family. The girls (and boys) are coming out to make a new Christmas CD!

I wish this month had not been so awful, but I am grateful for the many things I have come to know during our trial. I also hope the worst if over!

1 comment:

  1. Judy all of this is such good news. MERRY CHRISTMAS!!!