My updates are more sporadic because, frankly, this disease has lost its narrative drive. From the immediacy and discovery of the first two weeks, comes the drudgery of being in the day to day drag of a life… well, three lives… very much interrupted.
Lisa has had some pretty rough days this week. She’s been under 10k in platelets twice. She went down to 3k platelets on Friday only 36 hours after a transfusion on Wednesday. She’s tired, and dizzy. How much of it is reactions to chemo, and medications is hard to say. Or is the dizzy her reaction to Aplastic Anemia? No way to know right now. Depressing for her to think she might feel so muddled for months to come. We’re hoping as the chemo leaves her system, and as some of the medications are reduced, she’ll feel better. Regardless, we’re really tied to the relief of transfusions. This woman who is always up doing something, who I always hoped would learn to love a nap, is pretty much stuck on the couch. It’s that or the hospital for the time being. Lisa now has to go to UCLA for blood draws 3 days a week. She then waits an hour for results. If she needs a transfusion that’s another few hours. It’s a lot of time actively being in treatment.
I just want to say that I’m acutely aware that right now Lisa is living off of platelets and blood that have been donated by strangers. She simply would not live long without them, and we expect she will have a few transfusions every week for some time to come. I am grateful for everyone who has made these donations. While I have given blood, it has been a long time. One of those things that I know I believe in, but the gap between that belief, and finding a place and the time to donate is one I haven’t crossed in a long time. So big ups to everyone who makes this a part of their life.
After this experience, I know I will make platelet donations a part of my life. There does appear to be a way that you can donate directly to Lisa through UCLA’s donation center, but really we just hope you’ll consider blood or platelet donations in honor of Lisa’s fight.
We also hope Lisa won’t end up having a Bone Marrow Transplant, but as we plan, we would urge everyone to consider registering for Be The Match. We’ll stump for that in another email. Thank god on the karma scale, I signed up a few years ago when someone I worked with made a plea.
We are also incredibly grateful for everyone’s love and support. Huge thanks for Aunt Cindy who is ending her week long stint tomorrow. She was here during a very hard week, and we couldn’t have done it without her. She helped us begin to figure out how to do the day to day of this life, and allowed me to get back to work full-time. And thanks to Lara for flying out to help with Theo, and take me out for a few much needed drinks.
We see Paquette on Monday (once a week with him now). I’ll go with Lisa hoping for some big revelation, but I know that there are no answers for now. We just have to wait. And wait. And wait a little more.
Just to explain again, AA is an autoimmune disorder. Lisa’s immune system is fighting her, and attacking her bone marrow. The chemo is used to kill what was left of her immune system, hopefully clearing the way for her bone marrow to grow without being attacked by her system. Bone marrow doesn’t grow quickly, thus the 3-6 month wait to see if it works. With the chemo route some people relapse, or never get back up to their old numbers, but most are able to live a pretty normal life with a chronic disease.
If it works, it will probably take 1-3 years for her whole system to come back to full strength.
Bone Marrow Transplants offer something closer to a ‘cure’. But there are greater risks in doing it.
With such a rare disease, and one that not long ago people didn’t tend to survive for long periods of time, it’s hard to get a clear handle on the future, but there’s a lot of hope for a relatively normal life.
That’s ‘the blip’ theory. That when she beats this thing it will have been an intense… blip.
Also, we may need to hire someone to help out as we shuttle Lisa to UCLA and deal with Theo and his life. If anyone has a lead on someone, please let us know.
Well there you go… and I thought I had nothing to say.