OK—so my multiple myeloma is back. Short and simple: Now what do I do? When I was first faced with this possibility several months ago, I wrote about how each and every long term mm survivor I had interviewed over the past few years recommended following the same approach—stick with the last treatment that worked as long as you possibly can. Why? Because there is no guarantee the next therapy you try will work as well—if at all. And because squeezing the last few months, weeks or days out of each treatment is how one year turns into two, then three, then five and then ten. To use a military analogy, all myeloma patients are all fighting a delaying action. We are stalling—holding off the enemy for as long as we can until reinforcements arrive.
I will write about the specifics tomorrow. But while the details are still fresh in my mind, I want to share with you the details of an interesting visit my wife, Pattie, and I made to the American Cancer Society’s Hope Lodge in Tampa on Thursday.
Pattie was visiting Moffitt Cancer Center for the first time for her annual post cancer check-up. Adjoining Moffitt, across the road from the University of South Florida, sits Hope Lodge. Having lived “up north” in lake country for a number of years, we have a certain preconceived notion about what a “lodge” should look like—log sided, great room with a large stone fireplace, deer or moose heads mounted on the wall. Let me tell you—Hope Lodge was like no lodge I had ever seen! A modern “high rise” of sorts, this facility features the best of everything: Two room suites for patients and caregivers, large, spacious and modern kitchens on each floor, lots of glass, lots of light, impeccable landscaping, palm trees—the works!
Already knowing one of my possible treatment options was undergoing a stem cell transplant (SCT), I wanted to stop by and tour the facility—just in case I did decide to undergo a SCT and needed a place to stay as an outpatient for six or eight weeks following the procedure. We were greeted by a volunteer named Anne. Knowledgeable and friendly, Anne is a lung cancer survivor who volunteers at Hope Lodge one day each week as a way to give back for her care. Listening to Anne, you would have thought she worked at a day spa or vacation get-away. We could tell she loved working there—and the patients we met were all smiling and encouraging as well.
Just after I was initially diagnosed in April, 2007, my docs suggested I proceed immediately to SCT. I almost did, but my Revlimid therapy was working so well I decided to stop after my stem cells were harvested and wait. At that time we toured “The Transplant House,” a similar not for profit outpatient living facility three blocks for Mayo Clinic in Rochester, Minnesota. It was very nice, very affordable, but also very restrictive. For example, in order to encourage interaction between patients, the nuns who ran The Transplant House insisted there be no TV’s or computers allowed in your room. The house was impeccable, but parts were older, the patient rooms were small and everything was shared—the kitchen, library, computer and TV. We felt we were too old to embrace communal living at this point in our lives! I wrote in detail about my visit there—and my choice not to proceed to SCT—in my first book, Living with Multiple Myeloma.
Tampa’s Hope Lodge was the polar opposite (pun intended!) to The Transplant House in Minnesota. Big rooms (complete with TV’s and computer hook-ups in each suite) with an entire floor restricted for use by SCT patients. I could picture myself resting and recuperating, staring out at the palm trees and gardens. The kitchens looked great, there was shuttle service to and from Moffitt and the fourth floor view was awesome! It was almost enough to get me to sign-on for my SCT right then and there—almost!
I would like take this opportunity to thank volunteers like Anne and the two young medical students who were helping that day at places like Hope Lodge all over the country. Thank you so much!
More tomorrow about my treatment options for the next year or so.
Feel good and keep smiling! Pat