Monday, January 20, 2014

Four Years Ago Today


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 As many of you know, much of the literature can be outdated and grim, but many new advances are taking place in the world of Multiple Myeloma, and though not curable, it is highly treatable.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.

 

9 comments:

  1. Beautiful, Linda. Just beautiful. Life certainly does change and none of us would want to have cancer, but we do learn a lot because of the diagnosis, don't we? It does indeed strengthen us in so many ways. Praying for continued remission for EZ and me!

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    1. So wonderful to hear from you Susan! I realized it had been about 7 months since you posted and I prayed you were doing well. Sounds like you continue to be in remission and I am elated about that!

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  2. Love the new header, Mom! And what a perfect summary of the last four years. I especially love your last paragraph :)

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  3. Thanks for your encouraging update. All the best for 2014! May the Lord be with you and bless you exceedingly! We where fortunate enough to be in the USA over December/January, my daughter participated in the AMTC Convention in Orlando, we really had a great time! ;-)

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  4. Hi Linda! Happy new year to you and EZ and your BEAUTIFUL family! Love your 4 year anniversary recap! Congrats to EZ for winning over Myeloma! Cheers to continued remission forever! So crazy how he and I are just days apart in our diagnosis. I am glad his Docs kept him on Rev maintenance. I do believe that is the "secret" for many of us! So happy to hear of all your exciting family events, travel, kids and grandkids. Truly you have such a beautiful life. Your family is stunning! So glad we are e-friends! All the best for 2014 xoxo Julie

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  5. PS, love the pic of your notes! Crazy how our diagnosis meetings are such an emotional blur!!!

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  6. You both have come a long way. It looks like both of us are doing well... You are always in my thought and prayers....

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  7. Linda and EZ- We've never met you but have followed you because of Leah and Kyle and we have appreciated everything you have written about your journey. We will all go through something like this at some point and your experience and wisdom will come back to guide us. A very good friend of ours has Waldenstrom"s - similar but not the same as MM - but we have a firsthand view of so many medical difficulties and - expenses. Thank you for making it so evident that every day has wonder and so much to offer - new babies and good times to fight for. Thank you for sharing your experience and wisdom. Kathy and Dave

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    1. Kathy,
      Even though we've never met, I do feel like we know each other a bit, and Leah says we would be great friends if we lived closer:-). I am so sorry about your good friend's battle with Waldenstrom's...never have heard of it, but then again, never had heard of Multiple Myeloma either before Ernie was diagnosed! I read up about it and understand it is a very rare form of lymphoma, so they are both fighting a form of blood cancer. MM affects the plasma cells, and lymphoma the white blood cells. Both have a high level of protein in the urine, and are diagnosed with blood tests, urinalysis, and a bone marrow biopsy, and both are considered incurable. I was happy to read that Waldenstrom's is slow -growing, and fortunately doesn't affect the bones with destruction like MM. One of the drugs used to treat it (Velcade) was part of Ernie's initial regimen.

      We are so blessed to know that writing about our journey may somehow encourage someone else who is struggling. We had to do alot of research and reading on our own to understand what we were fighting, and believe you must be your own best advocate and be educated about your disease and advancements in treatment and research. We choose to see the cup half full, and count our blessings instead of our troubles. We are also very grateful that Ernie has been in remission for as long as he has, and that he tolerates the daily chemo pill as well as he does. It doesn't come without side effects, but we can deal with them.

      Thank you for writing to me, and please give your friend my email address if I can help in any way. baker.linda54@gmail.com.

      Blessings,
      Linda

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