Sunday, October 25, 2009

Where'd my energy go? And notes on a very nice lunch...

I'm pooped.

Two weeks ago, I felt great. My hemoglobin was 14.5 and didn't seem to be affected by the Revlimid, I was full of energy and felt like every day I was getting stronger.

The last four days or so, though, I've been very, very tired. Not quite like I was when I was recuperating from the transplants, but very tired. Nodding off on the couch sort of tired.

I don't know if this is a reaction from the maintenance therapy, or if I'm simply coming down with something that hasn't manifested fully yet. Frankly neither of those is a particularly appealing outcome. I'll get more bloodwork done on Tuesday and should have an idea if there is a clinical explanation like low red blood count. Hopefully it will have recovered because I start the second course of Revlimid that evening and whatever the blood has done to recover over the last seven days will have to be enough to sustain me for the next three weeks.

I am reminded that Kathy Giusti of the MMRF told me, when I first spoke with her shortly after my diagnosis, that "Revlimid is a very easy pill." Having said this, I sense that she was pleased to be off it when I had breakfast with her a few weeks ago.

Speaking of meals, I wanted to write a bit about a very nice lunch I had on Thursday with Les Bider, CEO of PinnacleCare.

Regular readers know that PinnacleCare ( is a healthcare advocacy service that basically allows you to delegate a significant portion of your care -- everything from research to appointments to medical records to prescriptions -- and free up your time to focus on getting (or staying) healthy. I'm probably understating the range of their services, but in my instance they have been very helpful from a practical standpoint, and also immensely supportive. I think i wrote here about the care package they sent me in the hospital, including handwritten notes from employees with relatives that had beaten blood cancer, a spiffy T-shirt that read "Cancer Sucks" and which I wore with pride in the transplant clinic, and candy that appears to have been consumed by my caregiver while I was in my Dilaudid coma. :)

Anyhow, Les was in Los Angeles for a few days and invited me to lunch to talk about my situation, my experience with his company, and the fact that we have probably almost crossed professional paths half a dozen times in the past ten years (his background prior to PinnacleCare is in media and private equity). We had a very nice conversation and I look forward to continuing our dialogue. I think it's a pretty remarkable thing for a company's CEO to take time out to meet with customers, let alone to have a good knowledge of that particular customer's health situation. PinnacleCare is not inexpensive, but I have found them very helpful and while I hope nobody reading this is facing a health situation like mine was a year ago, if any of you are, you should look into this company -- they can add more energy and resources to your fight and they are truly kind people.

Okay...I'm gonna try to get some rest now. I've been up since 2AM and it's 5:30AM now. Hard to say why I can't sleep at night but am exhausted during the day...haven't had Dex in six days so that can't be it....