First Connection

Oriental Poppy

Recently, at twilight, a deer appeared in my driveway. Silent as the emerging darkness, she stepped carefully onto the gravel. Behind her, a creamy froth of clouds smeared the horizon; crickets chirruped in celebration of the declining day. I watched as the doe slipped into the tall field grasses. After several minutes, I walked out to where she had crossed the road and exposed herself to danger. The failing light hid her path. She had vanished, leaving behind only the scuff of her hooves in the gravel.

My cancer, multiple myeloma, is equally enigmatic. One moment, it is here and the next it is gone. I carry all the evidence of its existence but the substance cannot be grasped. I rely on my support group, sponsored by the Leukemia and Lymphoma Society, to keep me grounded in the realities of this disease. At the monthly meetings, I interact with individuals whose various presentations of the illness cover the entire spectrum of multiple myeloma.

Delphiniums at dusk

Always, there are new faces seeking to buttress themselves against the shock of a cancer diagnosis. Others are long-term members of the group, survivors of up to a decade or more of treatments. Some, like myself, have a passive variation. We responded well to our choice of therapy. A few have complications from the MM, which has advanced and evolved in spite of numerous therapies.

Due in part to my association with this group, I became a “First Connection” volunteer with the Leukemia and Lymphoma Society. Periodically, a social worker with the LLS puts me in contact with a patient who has multiple myeloma. The idea is simple: connect an experienced person with a novice. In the course of the last eighteen months, under the auspices of this program, I have spoken with individuals from all across the United States. Most often, those I speak with are considering a stem cell transplant.

Spanky, finding his balance

Controversies surrounding transplants have blossomed due to the recent success of “novel agents” like revlimid and velcade. What was once the absolute standard of care, SCTs are now an exceptional treatment, recommended on the one hand and discouraged on the other. Some clinics believe the transplant procedure is too harsh on the body. They argue that the latest drugs deliver comparable remissions with less risk to the marrow environment. Other institutes extol the virtues of a transplant. They assert that a SCT (or two) plus extensive maintenance with the new drugs can deliver remissions that, for some patients, border on a cure. What’s one to do?

I can’t answer the question as to which protocol is best. This weekend I am celebrating the three-year anniversary of my own transplant. I naively went forward with the procedure seven months after diagnosis. It worked well for me. I enjoy excellent health; I have not had so much as a cold in over a year. The cancer boldly appeared in my blood when I sought the cause for persistent anemia. Then, it retreated when we fought back with chemo and a transplant. We still detect its footprint in my monthly blood labs. Essentially, though, it is well behaved… for the time being.

What I call a Monkey Flower

I keep it simple when talking with a newly diagnosed MMer through the First Connection program. Transplants are not, in and of themselves, curative. The procedure is arduous but I emphasize its tolerability. You will feel crummy for a period of four to six weeks. Following that, recovering your stamina will be slow but sure. Transplants are relatively safe. It’s not possible to foretell how you will respond; yet my leap of faith succeeded and I am not unique.

Everyone must make his or her own decision. Therefore, it behooves you to become informed. That is the first step in a lengthy journey with this disease. Yes, I was naïve with regard to stem cell transplants. Nonetheless, my wife and I performed the due diligence necessary to “own” our decision to undergo the procedure.

More happy flowers at dusk

Since that time, new treatments have advanced quickly. Now, the options are greater. Patients enjoy a wealth of choices. However, the decision on how to go forward can be confusing. Accordingly, one must be thorough in determining what works best for them. My choice had as much to do with logistics as it did an assessment of what I thought I could handle. Don’t be paralyzed by your doubt. Accept the uncertainty, trust your decision, and, most importantly, fight back.

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9 responses to “First Connection

  1. With cancer, as with most complicated things in life, there are no easy answers, although we crave them.

    The best thing a patient can do is evaluate the current science, get the advice of a doctor one trusts, then take the plunge and hope for the best.

    Best to you,
    Liliana

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  2. I enjoy your observations, whether about the cat, the deer or MM…as a caregiver I watched a relative make the choice for an auto SCT within months of diagnosis. It didn’t work, so another auto was done and it failed as well. Too many close calls to the Green Door and there was really only one last choice, a mini-allo with a sister – waiting, waiting, waiting… and now after over a year it looks like this one took. It is a tough choice; I know of at least one individual who was so poisoned by the chemo in preparation for an SCT that it was nearly deadly in itself and that is a risk. But I seem to be hearing more and more positive stories – is that attributable only to those who are talking? Hard to know, but I think I am on the road that if I had to make a choice, I would be aggressive, balls-to-the-wall, fighting it while my health was still good enough to sustain that choice. But that’s just me.

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  3. Reading your posts makes it so easy to visualize the beautiful scenes you describe. I too enjoy your obsevations, and perspective on multiple myeloma and trying to sort through all the options for treatment. It is often difficult navigating the maze. I’m sure your advice and opinion has been so very helpful to those you connect with!

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  4. Very nice John! I’m so happy that you are out there helping others in their deepest feelings of fear and despair. You are so right in your handling of the choices they must make. They need to OWN it as best they can and simply move forward. Its so scary. Sometimes I forget just how scary it was now that we are 3 years out from dx. Even with the new breakthroughs, we are still happy with the course we took. On the one hand I’m grateful for the “choices”, but in other respects it makes it more stressful for those newly diagnosed patients. I’m still believing for now that the answers for us will be in getting the high risk group into a sustained remission.

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  5. Excellent post John. Often so difficult to make these decisions for the newly diagnosed but once made, keeping focus and positive about your own regime I believe is paramount. Even more important in my humble opinion is to gain early diagnosis before too much damage is done – hence we should all be having yearly cbc’s. Never ignore tiredness that goes on for more than a few weeks. Early treatment before real damage is done now seems so very important. Stay well John. All best wishes.

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