Today I started a new cycle of an old drug. Dr. J and I decided on Friday afternoon that it was best to go right back to Carfilzomib, which I got a great response to, than to go off all chemo for 30 days in order to enter the clinical trial with Panibinostat. Since my numbers came back and the Kappa Chain proteins were high, I was not comfortable forgoing chemo even for 30 days. Also, as I mentioned in the last post, my back was beginning to hurt again. I do not want to take any chances here.
The logistics were tough – they are never easy – but this time in particular because I knew I wanted to get in for treatment right away. You see, Sunday Helene, Ava and I were supposed to drive Victor down to Baltimore for Cal Ripken Baseball Camp. I had a conference in St. Michaels, MD so the three of us were going to spend a couple of days at the Inn at Perry Cabin for my conference. I thought it would be great for the three of us. However – Cancer has its way of mucking up the best of plans. Since I was going in for treatment today (Monday) it would mean that we wouldn’t be able to stay at the conference. Helene suggested that one of us drive Victor down. She offered to do it so I could rest my back and get ready for Monday’s treatment. However that would mean that I miss my speaking time at the conference which was Monday AM at 10:30.
I think it also would have freaked Victor out a bit if I didn’t drive him. He knows my back has been hurting (I hope it is from too much golf by the way) and he can put two and two together. If we tell him that I can’t drive him because I am staying behind for treatment he will really freak out. Last time he went to Ripken Camp his dog died while he was there. I don’t want him going away for a week thinking his dad is going to die!
So although Helene was great in offering to take that weight off my shoulders (or my back) I declined because of two things: First – The words “skip a meeting” aren’t in my vocabulary and Second – it is too important that my kids see me strong and unimpeded on my rise to remission. Life does not change because I have Cancer – at least not that much. Cancer does not define me. I define me. Or maybe I should say I define me to the best of my ability.
So – off we went – Victor and I on Sunday afternoon – down the New Jersey Turnpike, stopping in Philadelphia for the original Pat’s Cheesesteak (not on the nutrition plan) cutting off the corner of Delaware and arriving in Baltimore to drop off Victor. Then I drove another two hours to St. Michaels, did a little dinner time schmooze, popped a few percocets and off to bed.
This morning I woke up, did my presentation (killed it by the way) drove through Maryland, Delaware, New Jersey and into NYC for the first infusion of this cycle of Carfilzomib. Heck if I can’t kill Cancer, maybe I can just outrun it!
For those who are asking, I feel great still. Back is a little better. I also enjoy the night time/late afternoon vibe at Mt. Sinai. It is a little less hectic. I think I was the last one there. I asked them if I needed to turn out the lights and lock up before I left. So – for the next few months it will be Mon/Tues Carfilzomib and Dex – (and a shout out to my Myeloma buddy Suzie I am getting the highest dose!) Every day 1 Pomalyst pill. 3 weeks on 1 week off for both. I think it should do the trick.
Lots going on but we are on top of it. The SILVER LINING in all of this? Ava and Helene are spending two days in Manhattan for some Mommy/Daughter time. I have been following their path on Facebook and they are loving every minute of it. Who knew there were so many cupcake/candy/chocolate stores in Manhattan. I think they have hit them all!
I talk about putting on a brave face for the kids. I talk about the kids a lot and how they deal or deny my diagnosis. I never give enough credit to Helene. It makes me smile to see all of their pictures and smiles as they eat their way through the city. Caregivers deserve acknowledgment too. Helene needs a day off or two every once in awhile as well. I couldn’t ask for a more caring, thoughtful wife. I am happiest when she is happy.
Back to Mt. Sinai tomorrow for a late infusion. 4:00 PM – anyone for a game of cards? I will be there until about 6:30.