I have heard from a number of you via email asking, “How am I feeling?”
Thanks so much for caring! No doubt that I have gotten all wrapped-up in all things ASH this past week.
Actually, I like it that way! Staying busy helps me to look past the day to day aches, pains and disappointments.
But to not acknowledge that I have some “physical issues” going on would be a form of denial–and you all know how I hate that!
So how have I been feeling before, during and after my trip?
I’m guessing like many of you, it depends on the day–or even the hour.
In preparation for my five day trip west, I planned a sort of drug free holiday. I took my last Revlimid capsule the Wednesday before I left. I also received my last sub-q Velcade injection that same day.
Most importantly, I took my last, little green dexamethasone pills three days earlier, too.
My plan worked. I felt remarkably well for most of my trip. My biggest challenge was severe and frequent cramping in my feet, shins, calves and hands.
I had been able to eliminate much of that at home by drinking up to one liter of Schweppes diet tonic water daily.
It’s a bit of an acquired taste. But I like it! Tastes a lot like sweet grapefruit juice.
I started doing that based on a tip from a reader a while back. Apparently, the quinine in the tonic helps prevent cramping.
Unfortunately, I wasn’t able to find any tonic water in small stores near our downtown hotel. But Michele, a good friend who recently moved to the San Diego area, rode to my rescue, delivering four 1 liter bottles to me after waking-up a half dozen times with severe cramping my first night there.
Otherwise I was dragging a bit. But thanks to the magic of balancing pain meds and the handful of anti-neuropathy supplements I take daily, I was able to get around just fine.
My first day back, I immediately started all three RVD medications.
I felt that big-time Wednesday night–and for the next few days. But taking a break really seemed to help. My white and red counts are holding surprisingly well. But I’m guessing this week will be the tough one…
I wrote a few weeks back about how I was starting an unofficial personal study to try and identify which drugs were causing each of a half dozen side-effects I have been experiencing over the past few months.
I will be sharing some specifics about all that soon. I think the results of my very unscientific trial might help me–and hopefully some of you– manage our new normal lives of needles, fatigue and pain.
For now, it should be enough to know that despite putting-up with a lot of inconvenient crap, I’m back, rested and doing just fine.
And what about ASH?
I have enough data, research and interviews to last for months. So I will continue to let it all trickle-out every other day or so on this site–and daily on MyelomaNews.com.
Thanks again for caring! But all of the uncomfortable inconvenience of traveling when I don’t feel well is more than offset by being able to help get the word out. Glad to help!
Feel good and keep smiling! Pat