Merry Christmas 2014: I'm still here!

Merry Christmas 2014

Many stem-cell transplants get five or ten years of remission: I only got one. So it goes. I have to live with that reality, until I don’t.

This illustrative chart of my M-Spike levels since I was diagnosed with Multiple Myeloma in January of 2012 tells the story better than any words can. My words will summarize and provide some context and explanation for the progression of the data along the all-important life-line of that graph.

Following my stem-cell transplant at the Roswell Park Cancer Institute in Buffalo, NY, I had one year of remission throughout most of 2013, but my Multiple Myeloma came back at the beginning of 2014, such that I had to resume a full regimen of weekly chemotherapy. Fortunately, my body was able to respond well to the chemo without doing me in through its unavoidable side-effects, so I can send you this Christmas card with joy and while in good spirits.

I realize that the image I am sending you is not exactly your traditional Christmas card image. It’s actually a graph of the biochemical marker in my bloodstream, called the M-Protein, or M-spike, which indicates the degree to which the malignant plasma cells called “myeloma” are present in my blood, over time, since I was first diagnosed in January 2012 with a rather aggressive form of the disease. At the same time, however, as the illustration of my life-line, it’s also the most intimate self-portrait which I can share with you at this point in time. That graph is me!

Some explanation might be in order for the non-medically oriented recipients of this mass-mailed Christmas card, for which I beg indulgence of those experts who have to wade through a presentation by a layman of technical and scientific stuff, which is presumably over his head and to which he’s not expected to pay too much attention anyway, lest he mess things up along the way. 

On this chart, “zero” does not mean that the myeloma cancer cells are all gone. Unfortunately, this particular disease is not curable; it is only controllable through chemotherapy. “Zero” on the chart means that, as far as current medical science goes, doctors can only look for and/or measure the presence of the cancer cells up to a certain point, beyond which their instruments cannot see clearly. The myeloma cells are still there: they just exist at—or below—the technical barrier of the scientific instruments used to look for them, which is a constraint known as the “zero detectable” limit. 

The laboratory doctor either reports “No M-spike seen,” and he notes down a number correlating with the amount of myeloma present per volume of blood, or he reports seeing traces of an M-spike that is so faint that it is “not quantifiable.” When the lab physician cannot quantitate the degree of immunologically useless—but harmful—antibodies known as M-Proteins, he ascribes the smallest possible numerical amount to his report, namely 0.15 Grams/DecaLiter, to indicate that something is still there, but science cannot say for sure how much is there.

What all this means is that, as long as my monthly check-ups show that this M-spike, which is the primary indicator among many which the doctors use to assess me and get a complete picture of the Multiple Myeloma cancer burden, stays at, or below, this zero detectable level, I am OK. I am surviving. 

Although no one can predict how things will turn out or how quickly things can change, what we can deduce so far in my adventure with this disease is that the current chemo regimen—which is exactly the same combination of drugs in exactly the same dosages as the full and aggressive regimen that I was given originally at the Erie County Medical Center—is actually working. Cancer cells are very smart, but myeloma cells are exceptionally smart: they’re tiny, complex organisms, branching off into many diverse families from a central tree, each cousin fighting amongst the others in this ruthless and unruly tribe to be the top dog in my bone marrow and in my blood stream, making treatment very challenging and ultimately ending in failure. It’s all a matter of time, as all Life is fated to be. To observe that the original chemo regimen I was given is still effective is something of a wonder to behold, for it is happening much to the amazement of my doctor and our mutual appreciation at its efficacy thus far. 

As it’s turning out, the original, high-powered, chemotherapeutic regimen that Dr. Zale Bernstein prescribed to pull me away from death’s door has become my “maintenance” regime. I guess the fact that my current oncologist must resort to such a high-powered, full course regimen is a further indication of the very advanced stage at which my cancer was first diagnosed, along with my allegedly “poor prognosis.” 

However, medical science being a very pragmatic—but imperfect—art, the plan now is to stay the course with this high-powered regimen for as long as we have success, and for as long as I can tolerate the side-effects of the poisonous drugs being used to keep the cancer down at that “zero” level. If and when one or the other of those factors changes significantly, it will be time to sing a different tune. But, as the main characters echo to each other in Ridley Scott’s great movie epic, Gladiator: ”not yet. Not yet!”

John-Michael

P.S. I launched my eBook (Then Came Cancer: My Adventure with Multiple Myeloma) and its companion website (ThenCameCancer.com) back in July, but Memberships (“sales”) have been extremely slow. Less than ten (10) Memberships. I feel disappointed, but not defeated. I spent most of the past three years writing the book, teaching myself a new website design program, and finally developing a website that I am convinced can be the most efficient, most comprehensive, most convenient one-stop destination for newly diagnosed Multiple Myeloma patients and their families. But not enough people are finding the website, nor are those few who do find it (through random Google searches, usually for the keywords “prognosis” and “life expectancy”) sign up for the Unlimited Access membership which gives them access not only to my personal narrative, but also to the extensive set of educational resources I have gathered together on their behalf. 

Although I would really like to move ahead to something new, I cannot allow myself to fail in this—perhaps my last—major project. Though I have extremely limited financial resources, I feel compelled to get the word out as best I can. So, throughout 2015, I will be focusing on the advertising and marketing communications aspects of this project. 

I will begin with a direct mail campaign to as many doctors throughout America as I can reach with my meager resources.

I had originally thought to use faxes to contact these physicians, but, upon further research I learned that, according the Junk Fax Prevention Law of 2005, it is illegal to fax to anyone with whom one does not already have a previous EBR, or “established business relationship.” Fines are stiff: $250 per infiltrating sheet of paper, up to almost $2,000 per transmission. Without that law, I would have been able to fax all 1.25 million doctors in a week for under $1,000. But thanks to some lobbyists who managed to convince our current crop of idiots in Congress that faxing was “stealing the property” of the recipients (i.e., their paper, their ink, their time), this restraint-of-trade law was put into effect.

I investigated email marketing, but the organizations which control the mailing lists, which are often licensed by the American Medical Association, want 45 cents per name. I found that rate so exorbitant that I felt obliged to compare it to traditional direct marketing techniques using printed paper and the U.S. Post Office.

While I concluded that it will be somewhat more expensive to use traditional, print-based direct marketing, I believe that I may get a better return on my investment if I physically place a high quality, multi-paged set of colorful pages in the hands of a doctor or his/her office staff than if I send out emails that will be shunted into a junk mail folder and deleted without ever being seen. It’s just a hunch, but it’s a risk I have to take.

Accordingly, for Christmas I invested in a Brother color laser printer and several reams of good quality paper, and I have been pumping out under-one-ounce-49-cent and up-to-two-ounces-70-cent “folded booklets” (as the Post Office calls them) in preparation for mailing them out, come the New Year. I’ll be buying a mailing list of hematologists and oncologists, and I will integrate their contact information into a FileMaker Pro database, so that I can do a mail merge with the address page of my outgoing mailers. 

After that, we’ll see who reads it and if they will help me get the word out to their patients by doing what I ask them to do in my booklets—namely, to put flyers in their offices and to be conduits informing their patients out about the availability of my eBook and its companion website.

Unfortunately, while I approach this direct marketing campaign with high hopes and invigorating enthusiasm, I don’t have high expectations from strangers. I’ve learned from my disappointing experience within the halls of Roswell Park itself—my home base—that doctors and medical staff and the administrative staff who run them do not seem to possess the highest level of marketing acumen or appreciation for an innovative public relations opportunity that has been staring them right in the face for many months now. My project is apparently beyond their narrow ken: they don’t seem to know how to exploit me and my project to their own advantage, which, in the right, creative hands, could be considerable. 

Beyond Roswell’s abject failure to appreciate what I have accomplished, to date not one of the fifty people to whom I promoted my eBook and my website has deigned to purchase a Membership, even though several of them promised to do so. 

More personally upsetting has been the reneging by several doctors at Roswell who told me that my book should required reading among not only among the nursing staff so that they could gain some empathy into what a patient feels as he progresses through all the stages of cancer diagnosis and treatment, but that my book should also be recommended reading for all other cancer patients who are going through the same thing I am, but who perhaps do not have the same intellectual capacity or ability to articulate what they feel as they move through the current medical system.

Perhaps rudest of all has been the lack of response from the top level administrative staff at Roswell, who individually and collectively in committee, have not even bothered to show me the courtesy of a reply to my written correspondence, my emails, and my verbal entreaties requesting nothing more than their permission to display flyers promoting my eBook and my website in a few select areas where Multiple Myeloma patients, stem-cell transplant patients, and other cancer patients going for chemo, commonly traffic. 

Despite this de facto rejection by Roswell’s medical staff and its administrative and marketing personnel, many of whom I met and got to know, I must still try to get the word out to doctors and staff and cancer treatment centers throughout the country whom I don’t know. Let Roswell keep its petty policies and procedures; they’re entitled to their prerogatives. However, I won’t let myself be constrained by their short-sightedness and lack of imagination. In my marketing campaign, I will go beyond the halls of that one great institution to get the word out to those who need it most.

Why should I bother to do that? Why should I spend what little money I have to get the word out? I suppose that, besides cancer, I must suffer from the disease of being a chronically naive fool: I intuit without sufficient proof that someone somewhere is desperately eager to get this information I have to share, so I do what I do, because it will help him. Thus, though I feel disappointed by those in whom I placed a certain degree of faith, I energize my will power to dig deep. I empower myself to overcome the rejections by those who had promised to support me and my work with more than lip service: I would be remiss if I gave up now. 

Sometime in between my marketing efforts throughout the New Year, I hope to be able to squeeze out another writing project—maybe a screenplay about having Multiple Myeloma, maybe a script about something else I was thinking about before I got derailed with this cancer. 

If I decide to write a script about Multiple Myeloma, I’d appreciate it if anyone knows how to personally get in touch with actor Matt Damon, whose father has Multiple Myeloma, as he revealed in a video that was recently webcast by the Multiple Myeloma Research Foundation. I wrote Matt a letter, but my letter bounced back due to the lack of a street address in the California town he now calls home. 

They say there are only six degrees of separation between one person and the next. Let me know if you’re on a chain to connect me to Matt Damon, so that I can ask him if he’s interested in participating in a feature film project I have in mind on Multiple Myeloma. One way or another, I will get the word out, or die trying.