“Life can only be understood backwards; but it must be lived forwards.” – Soren Kierkegaard
Looking back is an interesting mental exercise in being liberated and going forward with more understanding, purpose, and confidence. At least that’s been my experience. Being STUCK in the past is nowhere I want to be. Second-guessing decisions is not fun either. Regret is a wasted emotion. I have them, of course. I acknowledge them. But I learn from them. Wisdom is sometimes hard-won but is so valuable in our perspective about life, our life.
When the first “myeloma” doctor we consulted with gave Dave 1-2 years with her protocol as if it was water rolling off her back, I bristled. It took a lot of confront for me not to challenge her. That was not the data I had been told nor uncovered in my first research attempts online. Which, as you know, can be challenging when you are trying to find accurate information from accepted websites that are up to date. I mean, I didn’t know anything about Myeloma and had little guidance on the whole internet searching business. I did know to be wary and make sure I was finding “trusted sites.” Finding other patients like us was not yet the trend. There were no FB groups to join. But a dear friend said something so profound to me at that time, “Lori, you need to find survivors!” That sent me down a whole new worthwhile path.
Other patients in our situation did indeed have valuable bread crumbs for me. From there, I found patient bloggers. Some shared their daily life experiences, and others beat the drum of science and research and debate about which treatment path to take. Once I decided on UAMS/MIRT, much of my research continued. Collectively, out of all these bread crumbs emerged a more precise picture for me. Essentially, there was NO CLEAR PATH! There were so many treatment protocols that doctors and facilities were using. There was an intense debate on treatments such as those offered at UAMS being way too harsh. There was a debate on doing any SCT. There still is. However, I still strongly recommend an Academic Researching Facility over a Myeloma Specialist and a Myeloma Specialist over a general Hematologist/Oncologist. Mainly because of their experience and investment in the latest research debate and attending conferences. Colleague collaboration is vital to finding better treatment paths going forward.
So why did I urge Dave to come to Little Rock? Well, at the time, they were the only Institute dedicated 100% to treating Myeloma Patients in the world. Today, many academic researchers are intensely engaged in Myeloma, so they are no longer the only game in town. It is a good thing! People can get excellent treatment for Myeloma now in many countries and facilities in the USA. But at the time, Dr. Barlogie was the leader in research and publication. His legacy in driving research interest in this incurable cancer is legendary.
For me, since it is both an “orphan disease” as well as incurable, we needed to go where the research was occurring, where the guinea pigs were congregating. We needed to be where the cutting-edge therapies were occurring with doctors who saw the most patients and had the experience. When we needed our doctor to make an educated guess, we wanted one who had seen this before and had experience in what seemed to work.
When we met with that first doctor, who was so outdated in her life expectancy data, I felt as though, and I said as much to Dave, she would expect us to pat her on the back for every day he lived past two years. Not only that, her attitude was that Dave was going to die anyway, and that would relieve her of anything more she could offer or suggest. I didn’t want that for us. I wanted someone/someplace that was running the race ahead of us to find answers! That had a sense of URGENCY to figuring out the best practices to get patients into remission and keep them there as long as possible.
The other discussion that often comes up amongst doctors and patients is Quality of Life (QOL). It is a fair discussion and should come into play in your decision-making. My pet peeve is when a doctor DECIDES what your QOL should look like instead of having a more frank discussion on what it could look like and allowing you to decide. I get my hackles up when I hear doctors making statements that preclude specific treatment paths universally because of their opinion on QOL for the patient. Why? Well, it’s not their decision for one. And secondly, patients need to make their own decisions with the information. For instance, a 32-year-old mother of small children who is otherwise in good health will go through HELL to be there longer for her children. An 85-year-old man who has comorbidities would make a different choice. So when I hear “generalities” of QOL and the harshness of therapies, it makes me shout out loud for them to knock it off.
So the upshot of my reflections this morning is that I am still confident in our decision 13 1/2 years ago to travel far to Little Rock and trust in them to help us negotiate a path forward toward a longer life expectancy for Dave, as well as QOL. When in Dave’s room at the hospital, as we were finishing up Dave’s Car T stay, our doctor bragged that Dave has worked throughout his treatment all these years! The two doctors standing there were impressed as their eyes got big! I laughed and said how the nurses in transplant would poke their heads in and look at me to see if he was on a conference call before entering his room, how I would jump up and turn off the alarms while he was on the calls. We had a wonderful chuckle about it all. Does everyone with Myeloma have the QOL Dave has had? No. Believe it or not, many have had better! Some patients run marathons and ride their bicycles on 100-mile trips regularly. Some are older than Dave! What I see mostly, though, regardless of the physical impact on patients, is JOY. The joy they are alive and enjoying their children, grandchildren, proms, graduations, births, marriages, and so much more. Geraldine Ferraro comes to mind. She talked about when she was first diagnosed what her life expectancy was going forward. She said to the doctor, “I just want to see my grandkids graduate from HS!” She ended up seeing them graduate from college! And while I know she had tough days, she presented a woman who lived well with Myeloma and enjoyed her life as fully as she wanted.
Keep the faith, and pick your path and your team. There is no right or wrong path as long as you move forward to the best of your ability. Right now, we will take this victory going forward. We will deal with what is presented at any given moment.
