Bruce Jackson is a multiple myeloma patient who recently found Patient Empowerment Network (PEN) as a resource for his cancer journey. This is the second of a two-part series in which he shares his story from diagnosis to living his life with cancer. Read the first part to his story here.
“Don’t hide the disease, pull it out into the open so that others can get the chance to at least try to comprehend what you may be going through. The catharsis of being able to share has a value beyond measure.”
In my third weekly visit involving my new post-transplant treatment, I made another realization about this treatment journey: things can always get a little trickier. In this instance, I showed up, ready for week three, and soon after my blood draws, the nurse came in and said that we have a problem. My already low neutrophil count, of which the accepted minimum is a 1.0 value, was now down around 0.6, and my platelets, which have largely vacillated around 90 to 110, were now down to 53. My understanding is that 50 is kind of like no man’s land for platelets. When you are taking a drug cocktail involving new drugs, you don’t know what is responsible for the changes to your blood counts, so the decision was made to hold off on the Pomalyst. Now, doing that is all well and good, but for me, the obvious question is, what is my M protein level. It takes about three weeks to get those blood results back, and so, I haven’t seen any of those values since the start of my new regimen.
At this point, you can either worry, or you can test your trust in your healthcare provider. I prefer the latter, but I am also a bit of a control freak and relatively impatient, so I don’t care much for waiting on M protein results. Then, when I have the updated results, what is the next move? There is a lot of “waiting for the other shoe to drop” going on with cancer treatment. I wish I had a more clever way to describe this phenomenon, but the shoe-dropping concept grasps the matter pretty well.
Cancer was in my family with my mom. My mom went from breast cancer, to mastectomy, to five-year remission, to metastasis to lymph nodes, then bones, to demise over a total 12-year period that included chemo and radiation therapy. Her cancer happened back in the 1970s and 80s, and an incompetent doctor simply dismissed a small pea-sized lump as nothing to worry about. As you can imagine that little lump soon led to the need for a mastectomy, and I am convinced that the surgery, while keeping my mom allegedly cancer-free, in fact was allowing the cancer to stew and wait for a chance to reappear. Ironically, the doctor took the same approach with her own breast cancer, except she did nothing in terms of treatment, and she passed soon after getting an advanced diagnosis.
I share this information about my mom because no one should have to go through that kind of process. Self-education is important, but that doesn’t eliminate the need for an expert. I look at it this way: I sell construction chemicals and their proper use involves some very thorough understanding of application conditions as well as the performance properties of a specific material. I would perhaps be regarded as an expert in the construction chemicals realm. I do not expect my oncologist to know anything about construction chemicals, nor would she pretend that she did, but if she had a need for her house, she might take the time to learn, but she still isn’t going to be an expert.
Conversely, I take the time to try to learn about my disease and the treatment involved, but I will not become an expert on treatment any more than my oncologist will become with construction chemicals. All this said, I am not the expert, but I know enough to be able to problem solve, and I am in a position where my oncologist is less familiar with my regimen and what decisions were made that led to going from Velkade to Revlimid. In my case, a big part of it was due to neuropathic side effects which have now been largely addressed by a non-neuropathic drug called Olazapine, which was prescribed to help mitigate the hyper side effects from the DEX steroid. I make this point because there might remain some utility in Velkade as a chemo maintenance drug, especially in the face of the current situation with my new treatment. I know that you can go back to prior treatments, and the fact is that most of these treatments only have a two-year efficacy period anyway. Why not get two more years from Velkade if I can? I have shared the idea with my oncologist with the notion that we don’t just ignore this as an option. Maybe my idea has zero merit, but I still want it first considered and then eliminated accordingly if that is the case. It is important to be actively involved in this process.
During my first hospital visit, I was lying on a gurney, and they were telling me of possible side effects beyond the respiratory and digestive effects. Even in my lousy state I asked about the kind of side effects. When they said that I could have cardiovascular issues, including blood clots or DVTs, I asked how we would know whether I had any DVTs. They said I might feel cramps in my lower legs, and I responded with, “You mean like I feel right now?” The point is, just as I have to ask my customers what they have observed with a construction chemical product as I try to diagnose the issue, so, too, must a doctor diagnose your symptoms, and being non-participatory definitely does nothing to aid your cause.
Put on your thinking cap and ask questions. If you have a caregiver, have them ask questions as well. I use the expression to advocate for yourself. I said that a few weeks ago to my oncologist, and she said, “Well, you’re doing a very good job of that.” I did not say anything in response, but I was thinking, “Heck yeah! This is my life we are talking about!
I will share a story about coaching high school co-ed soccer in the Fall of 2019. It is typical for a parent or parents to coach these teams. My kids are grown, but I still coach, which probably had these kids confused a little. I explained that I had been an assistant coach with the club for several years, and I knew that because of my cancer, I might not be able to continue much longer, so I asked, as the fulfillment of a Bucket List item, to have my own team, and that wish was granted. I didn’t want any assistance, just me.
I told the kids that I had cancer and BOOM, I instantly had their attention. Call it momentary obligatory deference to something serious. I explained to them I had two choices. I could stay at home and feel sorry for myself, or I could come here and have them feel sorry for me. Fortunately, the kids had figured out that I was a bit of a wise guy, so when I said that they laughed, which was my objective. But more important, I wanted to penetrate their 15- and 16-year-old cerebral cortices far enough that they realized I was standing here in front of them making fun of my own incurable cancer. The rest of the story is that this team had lost every single match the year before under a different coach (who by the way, had much more knowledge about soccer than I did), and under me they won every single match that following year, including the Soccer 5 tournament.
Now, that claim is rife with caveats and disclaimers, but here is what I want you to take away from this story: you can do nothing, or you can do something. It doesn’t have to be coaching soccer; maybe it is simply advocating for yourself or advocating on behalf of someone else. I think that perhaps if you stop and ask yourself, “How can I make a contribution to the world around me,” after fair consideration, you will be amazed at what you might come up with as a list of options.
Even though multiple myeloma may be incurable, I can still make a contribution that can leave a lasting impression on the world around me. I have a number of people who tell me they are amazed that I am so strong in the face of my disease. I honestly doubt that is true, but what is true is that, regardless of how hard it may be, I can be transparent in my process, and in so doing have an impression on people who may not have experience with cancer. With my simple openness, I can try to shed the mystery and mystique about the disease. I think that is the most important takeaway. Don’t hide the disease, pull it out into the open so that others can get the chance to at least try to comprehend what you may be going through. The catharsis of being able to share has a value beyond measure.
Read more patient stories here.