Riding The Wave – Multiple Myeloma

“Obstacles are those frightful things you see when you take your eyes off the goal.” – Hannah Moore

As I have written in the past, and recently for Pat Killingsworth over at Living with Myeloma, the need to get opposing views on treatment in your consultation process…

I often read or hear about folks sounding resentful, or maybe its just my sensitivity to it, about the idea of going far from home for their treatment of Multiple Myeloma. So let me just tell you, emphatically, Dave and I are not wealthy or highly affluent. This was indeed a financial hardship on us, and would have been whether we traveled to Little Rock from California or treated locally or in San Francisco. Some expenses would have been less and some might have been more. Surely going away from treatment is more expensive in the pocket book, but treating locally may have been more costly in other ways.

I met a woman in Little Rock, when we were there after our first stem cell transplant for another “in between” treatment. She overheard I was from California. She followed me into the coffee area and struck up a conversation. She and her husband were also from California. She looked frightened and resigned all at the same time. If that is possible. Not assuming anything, I was thrilled to meet someone who had traveled so far and began the usual social banter, “Oh where in California?” And so on. As we got through that she quickly got to what was plaguing her. She told me that she had six children. (OMG! You would never have suspected!) When her husband was diagnosed, they had just had their sixth child, two years earlier. They had done their research and knew about Little Rock, but because of their situation with a newborn, they decided to go to the big name, highly respected, facility near their home. I understand, totally. She continued telling their story. He was in utter relapse and they made a desperate effort to get to Arkansas as the local docs said they couldn’t do anything more for him. They spent time trying to get him stabilized and collect stem cells. After a week of collection, 30,000 cells was all they could get (you need a minimum of two million). It was clearly becoming a desperate situation… She continued. “So, they have given him what they can in hopes that they can get it under control…” her voiced trailed off, she looked down at the floor, and then said, “Lori, we just didn’t know. We thought we were doing the right thing going there. We just didn’t know it wasn’t going to be a good decision and now….” I fought back tears, fully understanding that we almost made that very same decision. And we didn’t even have the situation she had, six kids under the age of 12 and a newborn. We were just looking at the convenience of dealing with it all close to home and for Dave’s job. But the truth is, we really didn’t know, just like she didn’t know. If we had not had a bad experience with the first doctor we consulted with locally, I wouldn’t have been pissed off enough to call Little Rock and get over my consideration to travel far away and all the obstacles in my mind of HOW that would be. The cost, Dave’s work, our dog Kip, how long would we be away, a partially moved-in new home, new neighbors to ask for help while we were gone, where would we stay, how did this all work? I tell people often, I had violated my own Life Rule:

Just state the WHAT and the HOW will work itself out.

I reached out to her and touched her arm and said, “How COULD you know? You had a newborn baby. Its a highly respected, well known, facility. Who would think it wouldn’t be the best choice in the world for you to go there and how lucky you were to have it in your backyard?” I meant every word I said. I wasn’t being disingenuous or placating her saying one thing and thinking another. How can you know?

I corresponded with her via email when we both went home to California. The last email I got, there weren’t but two, he wasn’t doing well. I never heard from her again, though I hoped to. I can only assume he has since passed away, though I like to think maybe, just maybe, I’m wrong.

When we are first diagnosed and we get to our first doctor, we are learning about this thing called Multiple Myeloma. We don’t think to ask what the specific doctor’s stats are with the patients they are treating. We just learn what the stats are generally, overall. We don’t know, often, there are all sorts of options in treatment. We tend to only learn what they will do, and we think that is simply what everyone does. I didn’t really begin to understand the treatment option dilemma in Multiple Myeloma until AFTER I got to Arkansas, AFTER we started treatment. For instance, no one ever told us that some were managing their disease with novel therapy drugs. We were told again and again, we would need a stem cell transplant. I only researched who was doing that better. I didn’t even understand then, that the transplant was the help in recovery from the chemo drugs. What drugs and dosing are used in the clearing the immune system are different from facility to facility. I didn’t understand that at all. I instinctively had an idea there was a huge difference, but why and what the differences were, and are, was quite illusive to me at the time (and in many ways, still are). This is why so many of us blog about Myeloma. We desperately want to give you the opportunity to know more going in than we did. Know more about what your options are in treatment.

So what I am saying, and what have I been saying, all along… when I suggest you get vastly differing opinions in how to approach your treatment, I’m not pretending for a moment, that traveling far from home isn’t a huge obstacle to overcome. Ultimately it will be your decision on what you do and where you go. But please, don’t deny your opportunity to learn more before you make your choice. What bothers me is when I hear people say, “I can’t go to… I can’t afford it… “, end of discussion.  And the truth is, some, not all, don’t know if they can’t find a way to do it, but dismiss it outright.

Most patients in Little Rock are NOT from Little Rock or even a daily drivable distance. Few are wealthy or even affluent. Most of us are run of the mill, middle class, hardworking folks with families, homes, jobs, mortgages, retired, who live far away, etc. And yet we, who go, somehow manage to make it work. There is tremendous support available with income based housing opportunities, free housing, low cost housing, and social worker support in managing the wide array of obstacles to overcome these issues at most of the big facilities. I met people who made it there with all sorts of interesting arrangements. Some stayed in their motor homes nearby and some stayed with parishioners located through networking amongst members of their church.

For us, since we didn’t feel comfortable with the doctor in Sacramento, we were looking at San Francisco and Stanford. Had we gone to either of those places, I would have had to get an apartment or a hotel room during the duration of Dave’s treatment visits as it was not a daily drivable distance. Staying in either of those places was far more costly than in Arkansas. So we were able to dismiss the additional costs and hit to our finances as a primary deterrent, once we knew we could not accept local treatment protocols to save Dave’s life. Once that was clear to us, everything else fell into place. We did many things to lessen the financial costs. We had two kids in college and I was no longer working because of the move and Dave’s illness. It was not easy, we are still recovering from the unexpected financial costs. Add to that, a difficult economy, our 401K’s tanking, and home equity values dropping, and it can seem overwhelming to climb out. Add to that, you don’t even know if you do all of this treatment and expenditure, that you will have a desired outcome. Fortunately, thus far, we have.

I can’t tell you what to do, and I won’t begrudge your own personal circumstances. I can only urge you to not shut off the opportunity, quickly, without at least giving the idea of treating far from home some modest consideration in your search to find treatment that will give you or your loved one, every opportunity to be around for a good long while.

So when I say, go to a researching facility, get differing points of views in your 2nd and 3rd opinions, I understand quite clearly what I’m suggesting you do. I understand it is overwhelming to consider traveling hundreds or thousands of miles away from home and all the logistics involved. Trust me, I did it. It’s not easy. But I’m glad we did, even if we had chosen to treat closer to home, it would have been with our eyes more wide open in our choice. A good outcome and no regrets, that’s my wish for you.

Just up at The Beacon, a physician who went to Arkansas for consultation but decided he didn’t want to be far from his family and children for treatment. He evaluated the two facilities differing approaches. He made his personal decision and is happy with that choice. This is all I’m saying… eyes wide open.

Tags: additional expenses, postaweek2011, Traveling for treatment