A reader emailed me and asked, “How do you feel?” My response: “It depends on the day.”
I started writing this piece Wednesday evening. All things considered, it could always be a lot worse! But Wednesday’s are infusion day. Velcade, Revlimid and dexamethasone, all rolled-into one fun-fulled night.
It starts with my sub-q Velcade injection between 3:00 and 4:00 PM. Then I take my 10 mg Revlimid capsule with dinner–thank God the dose is so small–25 mg felt like it was going to kill me after my transplant. Then I cap-things-off with a 40 mg dexamethasone “chaser” right before bedtime. Fun!
So “How do I feel?” Well, Wednesday night I felt wiped-out after my Velcade injection. It hits me like someone closed a door in my face! Every muscle feels stiff. And I just don’t feel good–but it only lasts a few hours.
There seems to be a cumulative effect to all of this. So the deeper I get into my cycles, the worse I feel. This was my fourth of four weekly Velcade injections, and the last week of my 21 day Revlimid regimen. So how did I feel? LOUSY!
I decided to wait and take a break, finishing this post Thursday morning. Taking the dex the night before helped, so I’m not feeling too bad right now. I will probably be dragging by mid-afternoon, then bounce-back after I swim and take a walk in the evening.
Tomorrow I should feel great, thanks to the dex. Friday is my “dex day,” when I mow the lawn and do projects around the house. I’ll most likely be all hyped-up, lots of energy and a lot less pain, thanks to the anti-inflammatory properties of the dex. So I’ve got that going for me!
Saturday varies. I may get a bonus energy boost in the morning. But I rarely “crash” like a number of patients I have heard from have described. So I’ve got that going for me, too!
RVD cycles aside, none of this addresses my bone pain. I’ll share more about that this weekend.
So “How do I feel?” Depends on the day? How about it depends on the hour!
Like many of you probably also do, I have learned to respond to that question by saying “Fine!” or “Not bad.” Because in most cases, I don’t think the person asking really wants to know!
I will share one thing. This weekly roller coaster ride really takes a toll on my body. Bet a lot of you have “Been there and done that!” I’m not looking for a medal, but it is becoming harder and harder to stay active and keep going.
But what choice do I have? Tomorrow I’m off to L.A. to speak to a pair of support groups. I fly back Sunday, then leave for the IMF’s Support Group Leadership Summit in Dallas Friday.
It helps me to be so busy. Keeps me from giving questions like “How do you feel?” too much thought…
Feel good and keep smiling! Pat