I came into the stem cell transplant program on May 1st. It has been a daunting journey for Denise and me both. At 3 PM today, I am scheduled for discharge and it is now 5:30 AM and no new hiccups, so the discharge is to be expected.
Now that this phase is over, I don’t expect to do so many play by play updates here, only if there is a a major change. But I wanted to take this opportunity to look forward to what this coming home to Anacortes will mean to us.
We are tired, beyond exhaustion. Our first step is trying to get our feet back on our own ground and to create some new patterns of life. I personally will focus on exercise and trying to get off as many of the 12 new medications that I can. I know that Denise deeply desires a new routine in exercise as our downtown walking and (for her) running got old.
I am still dealing with on complication of pseudo-host-vs-graft syndrome. It was purely awful around the July 4th, but now being on mega doses of steroids, all the symptoms have resolved except for a persistent rash. We pray as I taper the steroids, that the symptoms don’t return.
I know that I’ve explained this before, but I will try to again as there will be no misunderstanding. Stem cell transplants offer someone with MM the hopes of putting them into a deep and lasting remission. The American Cancer Society still list MM has having no cure. Often it is a matter of time before it returns, although my doctor here has used the “cure” term when she has seen patients remain in remission for 30 years. To help preventing it from returning, I will have to go back on chemotherapy, at least for 2 years (or life). There are other long-term risks because I’ve had a stem cell transplant, including developing other cancers.
We don’t know how well the stem cell transplant has worked, yet. We will re-stage my cancer in two months. Our hope is that the remission will be deep. There is a chance that all of this effort, expense and suffering bought us nothing and the cancer will be the same. That would be devastating as this process has been so hard on us, that I’m not sure I would go through it again, even to save my life.
We are tired, but feel disjointed from our Anacortes friends. We have had wonderful times with our kids who live in Seattle, but have only seen our Anacortes friends, Jerry and the Holtgeerts since May 1st.
We are open to visitors and desire them as we seek to reconnect, however, visits will have to be limited in time (no dinner parties) until we get on our feet.
I have an extremely limited immune system right now, from both the stem cell transplant and high doses of steroids. I cannot receive any visitor who is ill (even with a cold) for at least six months. While I can have limited time out in public, I cannot attend meetings (including church) until at least December.
I am hoping to return to my 5 miles per day hikes (but with trees rather than buildings) and would always appreciate a walking buddy. Denise is going to work to find her new normal and I want to take as much of the burden off of her as I can.
I had to park my small sail boat for the summer, but if anyone ever needs a deck hand, I might have the strength to manage a line or two. I miss sailing.
Thank you so much for making this arduous journey with us. If things go really well, they will consider me “back to normal” by next June.
Mike and Denise