Here is the fifth and final installment of Californian Ed Wolfman’s Transplant Chronicle:
Ed’s Transplant Chronicle. Part Five: Grateful!
Going home for the hospital is always a great pleasure. I left with the following instructions:
1) Try to exercise regularly but don’t overdo it. Walking on flat ground is good. Walking hills right away would not be so good.
2) Keep your weekend immune system in mind. Stay away from kids with runny noses and tightly crowded areas.
3) Don’t go back to work right away. Give it a few weeks.
I asked for written instructions to prohibit household chores like taking out the garbage and washing the dishes, but I couldn’t get them to do that.
So for the about 6 weeks, I lived a low key but quite nice life. My appetite was OK, but I would battle some occasional nausea. I generally felt strong enough, but found that I had a tendency to overdo it. For example, I figured that if walking was OK, walking after a golf ball would be OK too. So I went out to play an easy round of golf on a short, relatively flat, 9 hole, par 3 course. I got dizzy on the 4th hole and felt weak for the following few days. But overall, I did just fine. I caught up on my reading, watched seasons 1-4 of Mad Men and walked 1-2 miles on the Pacific Ocean boardwalk (we call it the Strand) every day.
My biggest problem was uncontrolled itching. (This gets a bit personal). I had several weeks of rather intense anal and genital itching. In comparison to other things I could have encountered, this was rather minor, but it was powerful enough to prevent me from sleeping. I was given some anti-fungal powder during my hospital stay and also brought some home fungal infections are common. But the powder was ineffective, as was hydrocortisone, lidocaine and another cream. It took several weeks of this before Dr. V suggested using baby diaper cream, which finally resolved the problem. However, the itchiness moved to my back which did not resolve before at least a week’s worth of constant hydrocortisone applications.
After about 6 weeks, I was feeling ready to go back to work. Dr. V authorized me to go back on a part-time basis and my employer readily complied. So I worked from 9 – 2 every day. It was hard not to get used to that schedule! But little by little, I worked my way back into a full work day. I miss those abbreviated days!
One of my favorite activities is tennis. After being home for about a month, I felt strong enough to do some very light hitting back and forth with my wife. I was only able to last for 10 minutes before I got dizzy and had to stop. A few weeks later, I was able to hit for about 45 minutes before getting dizzy. By week 6, I was able to play a set of doubles.
I am now on a maintenance program of Revlimid and Prednisone. I am having no difficulties with this program.
So here I am, just shy of 6 months from the transplant. The results have been solid. A bone marrow biopsy shows no sign of active myeloma. I am feeling strong and healthy. And overall I feel extremely fortunate.
Fortunate that I have had such a positive result. Fortunate that I had such excellent medical care. Fortunate that I have such a dedicated support system that extends from my family to my employer to the online world of people that I haven’t even met. I don’t know what I’ve done to deserve such good fate. Who knows what the future will hold, but for now, I feel great and feel an obligation to do what I can to help those who have not had such a positive experience with their myeloma treatments. This chronicle of my experience is just one small contribution to that goal. It is my hope that it serves as an example of what is possible without creating any false optimism for my fellow travelers.
I had it pretty easy. I hope the same for all of you, no matter what course you take.
Ed’s myeloma and transplant journey has been a relatively smooth one so far. No kidney issues or bone damage. His transplant experience was tolerable. And the transplant outcome looks to be good as well.
Of course, not all of us are so lucky! But his journey should be required reading for any newly diagnosed patient who is apprehensive (and who isn’t!) about their diagnosis and transplanting.
You hear a lot of arguments for delaying stem cell transplantation until after relapse. I am one of those who has made this argument over the years. And it’s the choice I made–and I don’t regret it!
Ed and I both decided to wait until we relapsed to transplant. But we were both relatively young and strong.
Ed has been lucky–if you can call getting multiple myeloma in one’s 50’s “lucky.” But he was also smart. One reas0n he “breezed” through his transplant is because he was stayed so healthy and active for five years after his diagnosis.
Not sure you can do that? Concerned that you might not be healthy enough to handle a stem cell transplant later on? This is one of the primary argument many myeloma docs make for not waiting to transplant.
Just another example of why we all need to be informed multiple myeloma patients–and why I push to speed-up the learning curve for the newly diagnosed. There are just so many treatment options and choices to make!
The picture above was taken at the top of Whistler Mountain in Vancouver last month. Ed, you look great! Many thanks for taking the time to share your story with us these past months.
Feel good and keep smiling! Pat