In a previous post I wrote about the initial steps in my treatment for multiple myeloma, which included radiation and chemotherapy. In this post I’ll write about the next step: My experience with a stem cell transplant. The very fact that I am writing this 10 years later gives away the bottom line – it worked.
Deb and I do a bit of volunteering at the Dana-Farber Cancer Institute in Boston. As part of our volunteer work, we provide support to newly diagnosed patients and their caregivers. Many of the people I talk to as part this program are facing a stem cell transplant. At the very least, they are apprehensive. Most are downright scared. I share my experience with a stem cell transplant in the hope that I can ease their concerns and fears. I’m writing this blog with the same purpose.
The prospect of going through a transplant is daunting. Those who are approaching transplants have a variety of concerns. Most worry about how the transplant itself will affect them and how hard it will be. Others are concerned that they might lose their hair or be very nauseous. Almost everyone dreads the long period of hospitalization and the even longer period of isolation that follows.
I will never tell anyone that a stem cell transplant is easy. It isn’t. But you can do it. The process, especially the high dose chemo, causes some fatigue and there are many days when you just don’t feel well. You might experience nausea, but that can be lessened and even eliminated with medication. And yes, you most likely will lose your hair. But it will come back.
The transplant itself was no big deal. I didn’t know what to expect but I anticipated that the world’s greatest doctors would converge on my room to give me the transplant. Instead a perky nurse came in with a bag containing a putrid-looking substance and announced, “I’ve got your stem cells.” After checking and verifying everything with a second nurse, she hooked me up to some monitoring equipment and attached the bag to my IV. I don’t remember how long it took, but it wasn’t long.
The time in the hospital passes more quickly than you would think. I slept a lot the first week or so. There was always plenty of activity in my room. Every morning a team of oncologists, residents, and physician’s assistants came in to examine me. The nurses looked in on me frequently. Nurse assistants were in often to check my vital signs. And, of course, Deb came in and spent the better part of every day with me.
The period of isolation also is not awful. You aren’t confined completely to your house. You can go out for walks and I highly recommend doing that. You just can’t be with crowds. You may also have visitors. Precautions have to be taken, however, such as having visitors wear a mask and making sure that you do not have any contact with a sick person. When my period of isolation was supposed to be up, we were at the beginning of the swine flu epidemic in 2009-2010. The world just wasn’t a safe place for me, so I had to stay somewhat isolated for a couple more months. But even that wasn’t bad. You do what you have to do.
The most important thing about getting through the transplant process is to remain positive and stay focused on the end result. Your goal is to get well – and you will – as long as you focus on the fact that life will get better.
Another piece of advice I have is to follow your doctors’ orders religiously. They know what they are doing and give you those instructions for a reason. Deb and I spent our careers in education and are rule followers. So, we did what we were told. The process went smoothly and we did not encounter any big problems. We credit that to having followed doctors’ orders.
As I look back, if I ever have to have another transplant, I won’t be too happy about it, but I won’t hesitate to do it.
As I write this I am almost 10 years post-transplant with an M-spike of 0 and all other test results are where they ought to be. My overall health is very good. I am able to do everything I want to do. I might do it a bit slower than I used to but that is due more to age than multiple myeloma. The bottom line is that I feel fantastic!
Life is good.