An important tenet of my monthly Burgundy Thread column has been to explore the concept that we multiple myeloma patients are inexorably connected to one another through our shared experiences and that by reaching out to one another, we all benefit.

Having battled multiple myeloma for nearly two years, I’ve learned how vital it is for me to intentionally keep myself connected on several fronts as myeloma has come boisterously storming into my life.

In its essence, being connected means that while you absorb the burdens that myeloma callously delivers to your doorstep, you are able to stay in touch and in tune with the facets of your life that you have always found essential. Your joys and passions, your relationships and responsibilities, your faith, your vocations and hobbies, and all of the things that make you uniquely you! The things that float your boat and get you out of bed every morning. You know what they are!

If there is anything that could potentially ‘disconnect’ you and me from our happier, pre-diagnosis walks on this planet, it would be having to face a traumatic, life-threatening illness such as myeloma.

As we transition into living with multiple myeloma, a malady most of us had previously never heard of, life often gets confusing, frustrating, and quite overwhelming. We practically lose our identities as we unwittingly become more and more ‘all about myeloma.’ It permeates our thoughts, our conversations, our everything, if we let it. Its force on us is immense.

We myeloma patients and our caregivers know all-too-well that this disease, if left unchecked, has the propensity to take everything we treasure out of focus and relegate it to the background.

Myeloma and its treatment are already bombarding our health. But is it inevitable that it robs our spirit and zest for life too? Is there anything that we can do to take back some control over this cancerous thief?

You bet there is! We can arm ourselves with accurate knowledge about multiple myeloma. We can fight by wresting back that elusive control and by remembering and exercising the purpose in our lives. Even when we are sicker than sick.

Sure it’s easier said than done, but perhaps you may find the following suggestions helpful:

1. Stay Connected To Your Medical Team: Do your due diligence when choosing your physicians and their treatment approaches just as you would when making any landmark decision that would affect the rest of your life! Your confidence is directly related to the trust you place in your medical professionals.

They should be ready, willing, and able to give you, in understandable terms, pertinent information regarding your diagnosis, treatment protocols, and expected outcomes. This knowledge enables you to become a competent voting member of your team. When you are solidly connected to your doctors, you will better understand your diagnosis and treatment options.

2. Connect With Your Diagnosis: Take a proactive stance in understanding your specific diagnosis. I’m afraid in this instance, ignorance is not bliss. Knowledge is power, as they say. Be tough and deal with the unvarnished truth by connecting with the reality of your situation.

Although we are lumped together in the category of ‘Multiple Myeloma Patients,’ we are individually affected in many different ways based on our diagnoses and other personal factors that we bring to the dogfight. As my friend and fellow myeloma survivor, Nick van Dyk, is fond of saying, there are many ‘flavors’ of myeloma.

Are you sub-typed as an IgG patient, or are you IgA, M, E, or D? Do you have excess kappa or lambda light chains? Do you have physical symptoms, such as significant bone or kidney issues, or does your myeloma present itself in other ways? Do you have unusual chromosomal challenges?

Why does it matter that we wrap our minds around what flavor of myeloma we have? It matters because there are different treatment philosophies for each individual diagnosis. Knowing the nature of your diagnosis is fundamentally important.

3. Stay Connected To Your Treatment: You will likely be facing blood tests, PET or PET/CT scans, MRIs, bone biopsies, bone marrow aspirations, chemotherapy, countless medications, and more throughout the course of your treatment.

Just as you set out to understand your diagnosis, you should try to firmly grasp your physician’s objectives in prescribing the procedures and treatments you will be undergoing. Know why you are participating in them and what the results can tell you. Should you watch and wait to see how the disease progresses? Should you take a conservative path or move onto a more aggressive track? The answers are not always clear cut, but when you are connected to your doctors and your diagnosis, you will better understand your treatment options.

4. Connect To The Best Myeloma Information: Make it a point to carefully choose and visit reputable myeloma-specific sites such as The Myeloma Beacon, The International Myeloma Foundation, and other reliable sources of current myeloma news, education, and evolving updates.

With a reasonable amount of effort, you will be surprised that myeloma’s seemingly foreign medical language will become second nature to you. Admit it, there was a time when words like “immunoglobulin” and “lenalidomide” and the like would not easily roll off of your tongue, not to mention that you didn’t know what they meant! Make the effort to boldly enter and connect to this world. After all, it’s your life we are talking about!

5. Connect With Your Caregiver: The complex role your caregiver plays in your treatment is invaluable. If at times you feel like a lab rat, your caregiver is your co-pilot in navigating through what seems like an unsolvable maze. They will confirm that you heard what you thought you heard your doctors and nurses say. They will get you to appointments on time, make sure that you take your meds and eat and drink, and so much more. They are our keepers and confidants, drivers and doers, facilitators and friends. They are our heroes!

6. Warmly Connect With Your Friends And Family: Keep in mind that your beloved family and friends are not immune to the fear and trepidation that myeloma throws our way. They will experience this battle in a different way than you and I will, but it will be no less real. They are hurting too, and they feel helpless in an area that is most compelling – they can’t cure you. Your care is left in the hands of strangers who cannot possibly love you as much as your friends and family do. In the midst of your struggle, try to be gentle and understanding with them.

Some may not be able to bring themselves to talk with you in nuts-and-bolts terms about your cancer, even though you are just trying to help them understand what it is that you are going through. You will recognize the glaze in their eyes. Be prepared for some of your friends, acquaintances, and colleagues to seemingly abandon you. It might be because they are uncomfortable dealing with the all-too-real nature of cancer. Or maybe they are just jerks! Believe it or not, it happens. Forgive them, perhaps they will come around.

But rest assured that many of your friends and family will stick by you. They will be there for you in ways you never expected or asked for. You just may be overwhelmed by their love and care. I’ve seen and I’ve felt those connections.

7. Connect With Other Multiple Myeloma Patients: One of your most valuable and intensely moving connections may well come from your relationship with other myeloma patients. They have a powerful and poignant ability to empathize with your struggle. They know the language, stress, pain, and triumphs that you will experience. And they can give you insight into the often times mystifying world of myeloma from a seasoned patient’s perspective. And it’s a two way street – you will help them as well. Visit the International Myeloma Foundation website for a list of active support groups.

Please do yourself a favor and read my fellow myeloma patient Pat Killingsworth’s column here at The Myeloma Beacon. He’s dedicated to serving all of us battling myeloma, and he has helped me in many ways throughout my journey.

Follow the well done patient and caregiver blogs out in cyberspace that inform and move you. The Myeloma Beacon lists in the links section many blogs that you might find useful.

In next month’s column, I’ll write about maintaining connections to your humor, your faith, your hope, and your passion – all very powerful forces! Until then, remember that the Burgundy Thread connects us all in Myelomaville through our shared battle. Be well!

Sean Murray