Tag: myeloma

My how time flies: My 6th re-birthday.

© 2011 Mark W Pouley

It’s been half a year since I’ve posted here. I hope you didn’t miss me too much. I’ve been busy living.

I write today to commemorate the 6th anniversary of my stem cell transplant. I distinctly remember that six years and a few months ago I was struggling with thoughts of what lay ahead. I knew that a transplant was my best hope of achieving a meaningful reversal of the myeloma that invaded my blood. Still, the many risks, and stories of horrendous side effects, left me wary. I was ready but frightened.

As it turned out, the transplant and my recovery went smoothly. I was home in about 30 days and I showed no signs of myeloma in regular blood tests about six months after the transplant. A few years later I tested MRD negative. At the time of the transplant, I hoped I would achieve at least two or three years of minimal disease involvement before I might need major treatment again. Here I am, six years later. Happy, healthy, and looking at life’s future.

I’m not superstitious or one to think I may jinx myself by writing these words, but you’ll excuse me a moment while I knock on some wood. I haven’t written here lately because I’ve been busy living. We are working around the house, planting, decorating, and remodeling. I’ve been snuggling my newest granddaughter and watching the others grow big. I’m witnessing my own children become amazing adults. I started down new career paths and I’m looking at other changes before retirement. All this living, without concern that my myeloma may return.

Isn’t that the goal for all of us? To live every day to the fullest without concern it will end one day. With my cancer diagnosis seven years ago it felt like I was being shown the when and how of my demise. I was merely marking time for the inevitable. Now I know that isn’t true. Will my myeloma return soon. That is possible. Will I ultimately leave this earth earlier than I’d hope? Isn’t it always “earlier” than we’d hope?

My diagnosis plays a part of my life every day. I take a fist full of medications every morning and night, one of which specifically targets the myeloma. I get blood drawn every two months and visit my doctors to review the results. I’ve had extra boosters and vaccinations to help avoid a serious case of Covid-19 or other diseases. Myeloma is inextricably connected to my day-to-day life. Even so, I’ve reclaimed control of my life from the disease.

I know not all myeloma patients are as fortunate in their treatment as I have been. I also know many patients like me live full lives beyond their diagnosis. Seven years ago I learned I had a “high risk” variant of incurable cancer and my life may be cut short. I was told and wanted to believe that statistics are meaningless in real life. The only statistic that matters to your disease is what happens to you. Will I respond well to treatment? Will I achieve many healthy post-transplant years?

While the answer to these questions can be different for every patient, I’m here to say it can happen. It happened to me. Looking forward from diagnosis is such a difficult and frightening task. Looking back from an undetermined but hopeful future is a luxury.

I will try to share more of my experiences as a myeloma patient here, but you’ll excuse me it I keep busy with all the other glorious parts of living.

Walk with me

If we’re gonna make it
Cross this river alive
You need to think like a boat
And go with the tide
And I know where you’ve been
Has really left you in doubt
Of ever finding a harbour
Of figuring this out

And you’re gonna need, all the help you can get
So lift up your arms now, and reach for it
And reach for it

And take your time babe
It’s not as bad as it seemed
You’ll be fine babe
It’s just some rivers and streams
In between, you and where you want to be

Watch the signs now
You’ll know what they mean
You’ll be fine now
Just stay close to me
And may good hope, walk with you through everything

~”Song of Good Hope”, Glen Hansard

Glen Hansard wrote the “Song of Good Hope” for a dear friend battling cancer. The song references the rough waters sailors endured to reach the Cape of Good Hope and their feelings of relief when they made it. The message of needing help, and reaching out for friends to walk with through troubled times is comforting.

When I was first diagnosed with multiple myeloma the thought of joining a “support group” was not appealing. I hadn’t come to grips with my own diagnosis and the thought of being with people describing the extent of their illness, and the loss of members from the group, was frightening. In time, I came to understand the value of sharing stories with other patients, and talking to people ahead of me on the journey was some of the best medicine I could get. While I’ve not joined a traditional in-person support group, I’ve found other ways to reach out and lend a hand.

I started documenting my time with myeloma just before my stem cell transplant in 2015. While I write these columns first for myself, a form a journaling, I always hope someone is inspired after reading my story. For those that know me, but don’t know about myeloma, I hope they learn something about this disease. For those that don’t know me, but are themselves touched by myeloma, I want my writing to answer questions, alleviate fear, and offer hope. I’ve heard from many people, friends and strangers, and I believe I’m achieving these goals.

Today the internet offers cancer patients endless alternatives too in-person support groups to seek information about myeloma and it’s treatment. Patients must exercise extreme caution when reading on-line information because much of it is outdated, inaccurate and frightening. There are, however, many great resources. Some of the reliable organizations on line include the Multiple Myeloma Research Foundation, All4Cure,The International Myeloma Foundation, International Myeloma Society. Each organization has its own identity, but they all have education of patients and advancing research for a cure as common goals.

The Health Tree Foundation is another great resource. I’ve joined the Myeloma Coach program sponsored by Healthtree. The foundation experts and doctors train the coaches and provide them tools to help patients. Patients can connect with coaches with a similar disease profile, undergoing specific treatments, living in certain geographic areas or offering advice on particular subjects. I’ve met with several patients and the experience is always positive. If you are looking to connect with a fellow patient or caregiver give the Myeloma Coach program a try.

A cancer diagnosis is challenging. There are rough waters to navigate, but there are people that have gone before ready to provide comfort and guidance.

Watch the signs now
You’ll know what they mean
You’ll be fine now
Just stay close to me
And may good hope, walk with you through everything

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