The Myeloma Journey

Treatment advancements for myeloma are being made all the time. In this poem, one survivor shares his story.

This poem was submitted by Ron Valentini, in hope that those experiencing multiple myeloma, or other cancers, will find solace in knowing that advancements in treatments are being made every day, and a positive attitude with caregiver acceptance and support will prolong one’s days for a productive life.

The Journey

It wasn’t a planned journey, definitely not on my bucket list,

No itinerary, no advance reservations, no GPS to follow.

March 2010 – diagnosis date. March is national Multiple Myeloma Month. Lucky for me.

Is that cancer? Explanations, prognosis.

Immediate thoughts?? Death; what I would not be able to witness or do; grandchildrens’ graduations, weddings.

After initial reaction — fear, tears, then down to the basics.

Number of years, treatment options, next steps.

Just like in my past and family Italian experiences, you move on to the next day.

Not questioning the how, or why me? Until I can’t move, breathe or think, I’m alive.

Autologous stem cell transplant was chosen. Seemed to be the best option, after initial treatments with thalidomide, dex, Velcade, Revlimid, Zometa, Acyclovir.

Lost a little hair initially but came back curly!

One scary night of extensive bleeding at sight of Hickman catheter.

Overall experience not as traumatic as highly anticipated.

13 years of remission with combination of treatments

Now 14 years later (after initial prognosis of one and a half to two years), underwent CAR-T Cell therapy. Had rhinovirus, flu and recently pneumonia at same time.

Now three months later, almost feeling like my “pre-CAR—T normal”, (which isn’t a “real normal,” never know from day to day).

Future plans? As I’ve seen quoted before. “Life is what happens to you while you’re making other plans.” Future trips, events, activities still float in my mind daily, hopefully to be fulfilled with time. Til then my reading, writing, music and viewing remains my therapy.

This post was written and submitted by Ron Valentini. The article reflects the views of Valentini and not of CURE®. This is also not supposed to be intended as medical advice.

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