Walking with Big EZ: January 2014

When you are diagnosed/living with any form of cancer, you can lose hope, forget how to laugh, and immerse yourself in a world where numbers suddenly become the most important thing to you. EZ has always been a "numbers person", but I have always struggled with numbers...I am a people person. You are soon forced to discover a lot of new terminology that you never dreamed you would become proficient with, and you can hardly concentrate on anything but the disease.

Four years ago today we had our first meeting with Oncologist Dr. Alan Kritz, from Cancer Centers of North Carolina. Having the results of EZ's MRI (1/4/10) and sacral biopsy (1/14/10) in hand, Dr. Kritz did a bone marrow biopsy and extensive bloodwork, ordered a 24 hour urinalysis and long bone x-rays (bone survey). The Bone Marrow Biopsy Report and labwork from 1/20/10 revealed the following:

M-spike 2, WBC - 7.0, Hemoglobin- 12.0, Platelets - 200 K

20-30% plasma cells, monoclonal IgA kappa plasma cell population

Cytogenic studies revealed trisomy 3, but negative for both a deletion of RB1 on chromosome 13 and a deletion of TP35 on chromosome 17.

A Bone Survey from 1/22/10 showed the following:

Multiple punched-out lesions involving the skull, bilateral humeri and left femur

I often look back to my notes from 1/5/10 when we met with our orthopedic doctor to get the results of the MRI. I didn't even know how to spell "myeloma", let alone understand what he was telling us about the suspicion that this mass of abnormal cells (plasmacytoma) on EZ's sacrum most likely indicated some form of blood cancer. Complete shock!

We were indeed facing Multiple Myeloma, and treatment proceeded in earnest. Radiation to EZ's sacrum began on 1/26/10, a port was surgically implanted on 2/4/10, and chemotherapy and bone strengthener infusions began on 2/5/10. All the while we were trying to educate ourselves about what we were facing and what the prognosis might look like. As many of you know, much of the literature can be outdated and grim, but many new advances are taking place in the world of Multiple Myeloma, and though not curable, it is highly treatable. Wow, how we clung to those words...highly treatable. Our plan was to beat this aggressive blood cancer into remission, and move on to stem cell transplant, and maintenance therapy. Though not without its share of hardships, we accomplished our mission and EZ has remained on maintenance therapy (Revlimid 10mg) for over 3 years now. Under the care of Dr. Kritz, and Dr. Cristina Gasparetto at Duke, he has achieved wonderful results and we are so very grateful. We, of course, are praying that remission continues for a long time to come, though we are not ignorant of the fact that relapse is a very real possibility.

I want to encourage those of you who may have also received very unexpected news at one time or another, that all hope should not be lost. Dig your heels in, educate yourself with up-to-date information about what you are facing, choose your doctors wisely, don't be afraid to seek second opinions, ask questions, surround yourself with family and supportive friends who will "come along side" you in your battle, and never underestimate the power of prayer! All that we have been through has served to strengthen our marriage, deepen our faith, and enlighten us as to the beauty of each day, never taking life for granted.

We have many fond memories of the past 4 years. We have had 3 grandchildren born (with another on the way) since EZ's diagnosis. We have traveled to Disney World, the Keys, Seattle, Alaska and soon, The Grand Canyon and Hoover Dam. We have moved to a new home where life is more manageable (and yard maintenance is provided!). We have met some incredible people, in person and online, who are also battling MM or caring for a loved one with MM, and our lives are richer because of them. We have been humbled by the generosity of many, some of whom we have never met. We have learned to accept help. We have laughed. Most of all, we are even more convinced of how much we are loved by God, who in His faithfulness, has sustained us.

We look forward to 2014 with hope and excitement, as there will be a new baby boy to meet, and new travel adventures to enjoy with one another. Live life, remain hopeful, and stay positive.

Can I just say what a blessing these five little ones are to us? To think that four years ago, when EZ was diagnosed on January 20th of 2010, we had one set of twin grandchildren, Natalie and Nathan. Our daughter Tara was expecting our second set of twin grandchildren, Samantha and Samuel, that February. A year later, our daughter Leah gave birth to our little singleton, Emery, and so there were five. In May, Emery will have a little brother and there will be six! We are beyond ecstatic!

When we were told that EZ had Multiple Myeloma, we were so very uncertain about what the future held. And though the past four years have had their share of peaks and valleys, we can say without a doubt that these five have been the best medicine, and brought the most joy! Their giggles, exuberance, cuddles, and love have brought us smiles on even the most painful of days. We are so grateful for our family and the love we share. This Grandma and Grandpa will never take it for granted, as we treasure each day with them. God is so very good.