A Lot Can Happen in Five Years

It’s hard to believe that I haven’t updated our blog since January of 2016. So much has happened that I feel it is impossible to adequately share it here. However, after hearing from two dear online friends this week, who I met through this blog, I knew I needed to come back and share some very difficult news.

Big EZ lost his battle with Multiple Myeloma at 5:00pm on April 26, 2019. He was surrounded by family, and not in pain, as he peacefully left this earth for heaven. He valiantly fought blood cancer for nine years and four months. He endured seven different treatment combinations, a clinical trial, 70 radiation treatments, surgery to insert a pin in his left femoral neck, kidney cancer and the surgical removal of a kidney, two autologous stem cell transplants, foot drop, and multiple compression fractures in his cervical, thoracic, and lumbar spine. His cause of death was Multiple Myeloma. He did not contract pneumonia and thank goodness this was all before any of us had ever heard of Covid 19. We were married for over 43 years, and I still find it hard to believe he has been gone for over two years now. I miss him every single day, and may never get used to being called a widow. 

In typical Big EZ fashion, he always remained hopeful, kept his sense of humor, and never complained or asked “Why me?” He set an example for his family and friends of what it means to live out your faith, to make the most of your days, and to be intentional in telling your loved ones how much they mean to you. We were able to celebrate his 67 years of life at our church in Raleigh, North Carolina, enjoying a slide show of  over 300 photos, heartfelt words from his family members including his three children and six grandchildren, testimonies from his closest friends, his favorite blue grass music, his favorite snack foods, and trying our hand at his much loved cork tricks and brain-teaser puzzles. 

“I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for

 me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day…”

 2 Timothy 4:7-8

I will write a few more posts to fill in the huge gap of what went on in our lives during the three years from 2016 to 2019, including a move to our log cabin in the mountains, two unforgettable vacations, relapse, more treatment, and a second stem cell transplant at Duke. I am so grateful for those friends we met through our connection with Multiple Myeloma and this blog. Your encouragement and support through the years meant so much to EZ and I. Unfortunately as social media began to change, keeping up with blogging was replaced by simpler postings on Instagram and Facebook, and I lost touch with many of you. I hope and pray you are well and continuing to fight the good fight until a cure is found. 

Linda

Looking Back on This Day in 2010

January 20th will always be a significant day in EZ's Multiple Myeloma history. You can read all about it in my post from 2014 by going to the link here.

I couldn't let this day slip by without reminiscing. January 20, 2010 was when we first met EZ's local oncologist, Dr. Alan Kritz, and began this journey of life with Multiple Myeloma. We hardly knew what was about to hit us then, and it feels good to be six years down the road and looking forward to the future with great hope and expectation. We are so blessed to live in an area where two hospitals do stem cell transplants (Duke and University of North Carolina), and where there are many excellent myeloma specialists available to treat patients. We are thankful NOT to be in an oncologist's office today, but rather at home in front of the fireplace, waiting for some snow flurries to begin falling.

Lucy, our newly adopted English Springer Spaniel

As I think back to a time of deep uncertainty with EZ's cancer diagnosis, job/insurance loss, a 31 day hospitalization, huge financial concerns, radiation, chemotherapy, stem cell transplant, and a scary future, I am reminded that none of this came as a surprise to God. He holds our future in His hands, and He helped us get through each and every day with His strength, not our own. We hardly knew how to put one foot in front of the other, but He loved us. He helped us. People prayed for us. Friends and family supported us. Doctors cared for us. We are grateful. 

EZ's Mr. Clean look

We don't know what the future holds, but we know Who holds the future. We will continue to be educated about all things MM. We will be involved in our Triangle Multiple Myeloma Support Group. We will give to wonderful organizations such as the IMF, MMRF, and LLS, in the hope that research and advances in treatment might continue to improve and prolong the lives of patients. We will pray for a cure. We will live life with hope, and treasure every day. We will try to show love and support to others who are fighting the good fight with MM. We will do this together, hand-in-hand, one step at a time.

Bacardi Beach, Samana Dominican Republic

Please leave a comment if there is any way we can encourage, or be of help to you today.

Happy New Year 2016!

Greetings! For those of you that may not have heard from us in the past year, can you tell from this picture that life is good? Hope that puts your heart and mind at ease right away. We realize that in the world of unpredictable Multiple Myeloma, not hearing from fellow survivors for a bit can be scary. 

In November of 2015, EZ and I were able to celebrate our 40th anniversary (a month early) in beautiful Samana, Dominican Republic! It was an amazing time away for the two of us, to reflect on all of God's goodness in our marriage, and in Ernie's battle with MM. We took long walks on the beach, snorkled, dined in fine fashion, watched beautiful sunsets, and just enjoyed celebrating love and life.

With EZ's diagnosis six years ago, we were shocked, saddened, devastated, fearful, confused and overwhelmed. But today, we are grateful and full of hope for our future. Our prayer is that others would be encouraged by our journey, and see that there is One bigger than ourselves and our circumstances. Thank you to our family, friends, and church for your prayers and support over the years. 

EZ's M-spike remains at 0, "undetectable". The results of his bloodwork remain stable, as they have all year. He continues to take 10 mg Revlimid daily, with no days off, and has been on this regimen for 5 years now, tolerating it exceptionally well. Yes, he lives with neuropathy, daily sweating, a suppressed immune system, and insomnia, but overall, he can still enjoy life every day!

I can't wait to share more highlights (EZ's deep sea fishing trip to the Bahamas), and lowlights (the passing of his sweet Mom), from 2015. My goal is to blog much more often. We love and appreciate those we have met online, traveling a similar, or dissimilar, journey with MM, and never want to lose touch. There were many times in the past that we never imagined traveling again, or seeing our 40th anniversary, but here we are. If you are facing difficult circumstances, try to keep the faith and hold on to hope for the future. We are proof you might be surprised by all the blessings that await you!

 

Remembering my Dad

Today is the sixth anniversary of my father's passing. We miss him every day, and wish so much that cancer had not robbed us of many more years with him. I know there are many people reading this today, and feeling the same way about a loved one. I admired him for so many reasons, and loved being his little girl. I wanted to share what I wrote to be read at his funeral service, so that others could get to know him, and remember him today.
 

Remembering My Dad

It is hard to put in to words all the emotions and memories that are flooding my mind. I simply want to say that I sure do love my Dad and will miss him more than words can say. I am so grateful to have had him for so many years, and for being there by his side as he went to be with the Lord.

He will forever be a man of great courage, not only by the way he fought his battle with cancer, but in the way he served his country in Vietnam. He taught us to honor the American flag, love our country, and pray for the troops, wherever they might be. My two brothers even spent time in the Army, following in his footsteps.  I know that made him so proud.

He was a man dedicated to his family, showing us the world during his military career.  We spent so much time together exploring far away places, and experiencing things like water skiing on the Panama Canal and walking up Mt. Vesuvius in Italy. He took us boating and camping that our family might steal away and be together, creating memories that have lasted a lifetime.

He was a man of integrity and honesty and never in my life do I remember him telling a lie. He showed us the value of hard work and never seemed to run out of energy before he had cancer. He was organized and cared for his household in a meticulous way, and we often joked that his garage was neater than our house. He loved his Park Avenue and would refuse to drive it if the forecast called for rain, lest it should get dirty.

He was a dedicated Alumnus and his love for FSU and the Seminoles was apparent in his home, his cars, and certainly in his dress. Even to his last weeks in the hospital and hospice house, he held up his finger and told everyone the Seminoles were number 1.  Bobby Bowden would have been proud to hear the song Dad made up and sang in his honor. Our children grew up wearing garnet and gold and we would often find hidden FSU decals secretly placed on our cars.

He had a sense of humor too, as many of you well know.  We were in stitches thinking back to his antics and I am grateful for his funny side and the memories we have of him laughing.

He considered my Mom the love of his life, married 60 years, and together they showed us children what it meant to be committed for life, till death did they part. Often far away from extended family, they stuck together and made it through many a difficult day. My mother’s care for him during his battle with cancer certainly extended his days, and we are grateful for how she unselfishly served him, stepping up and taking care of many things he had always taken care of.

My Dad also loved his church, his Sunday school classes, his fraternal brothers the Masons, the Eastern Star, his Scottish and Southern heritage, and of course his cat Sheba.

Thank you Dad for leaving a legacy of courage, patriotism, family, integrity, honesty, loyalty, laughter, love and faith.  We will never forget all you taught us, we will take care of Mom and Sheba, and we look forward to seeing you again, in heaven.

Great Day at the IMF Regional Community Workshop in Charlotte, NC

Saturday, June 6, 2015 was a great day in Charlotte, NC for the International Myeloma Foundation's Regional Community Workshop, titled "Living Successfully with Multiple Myeloma". The featured speakers were ones we had never heard before, and we were very impressed:  Dr. Saad Usmani (Dr. Barlogie was his mentor), Director of Plasma Cell Disorders and Clinical Research in Hematologic Malignancies at the Levine Cancer Center/Carolinas Healthcare System, in Charlotte NC, and Dr. Craig Cole, Assistant Professor of Hematology and Oncology at University of Michigan, Ann Arbor. Charise Gleason, MSN, NP-BC from Emory University Winship Cancer Center, Atlanta, GA also spoke to us on Supportive Care. These doctors are brilliant, and full of hope and energy in regard to the battle against Multiple Myeloma and the exciting advances in science and research! Their work is groundbreaking, and we were privileged to sit under their teaching for the day. The Westin also fed us very well, which never hurts when you are sitting for so long trying to understand very difficult terminology, some of which is familiar and much of which is not.

Unfortunately there were no handouts, so we were writing furiously as they spoke, trying to capture screen shots of charts, graphs and other key bits of information. (I still understand very little of the science associated with MM cells and treatment, so I apologize for keeping it simple, and not sharing more. There are plenty of sites like IMF, MMRF, LLS, Myeloma Beacon, and others, that have comprehensive information for you!) With so much outdated information circulating on the internet, it was encouraging to hear about accurate, up-to-date findings, with promising data from clinical trials, especially Antibody Targeting of Multiple Myeloma (Antibody based therapy) in relapsed or refractory myeloma. Myeloma cells have surface proteins, antibodies attach to surface proteins, multiple natural processes attack the MM cells identified by the antibody! Clinical trials of the following immunotherapy combinations are showing wonderful response rates, fewer side effects (no neuropathy), and increased time until relapse, so we are excited about these trials and combinations and look forward to FDA approval:

Daratumumab + Rev/dex
Elotuzumab + Rev/dex
SAR + Rev/dex

Here was lunch. I told you they fed us well :-)

Below are a few excerpts from my notes that were important to us (I apologize in advance for any inaccuracies):

Dr. Cole stated: "Multiple Myeloma represents 1% of all cancers, 10% of blood cancers, and it is not inherited. The cause remains unknown, though data showing exposure to ionizing radiation, diesel/engine fuel, and pesticides is convincing. The incidence statistics show 3 per 100,000 are Asian, 5 per 100,000 are Caucasian, and 12 per 100,000 are African American.

An essential feature of MM cancer progression is the variability within cancer cells called 'intra-clonal heterogeneity' (ICH). There are 3-6 sub-populations of cells that have different characteristics and aggressiveness. The most aggressive take over...survival of the fittest. 82% of patients have multiple gene definitions; different biological characteristics and treatment reactions. Relapsed MM is so hard to treat because you are dealing with so many different sub-clones! BUT, people ARE getting better, and clinical trials are becoming the standard of care...then, CURE! Great changes are coming quickly with the goal of gaining maximum effectiveness from treatment, with little side effects. Question your doctor, demand more, and take an active role in your treatment decisions. "

Dr. Usmani stated:  "In regard to Myeloma options at diagnosis, MM is not one disease, so one size does not fit all. Individualized therapy by a myeloma expert is critical. Don't ever be afraid to ask for a second opinion. Patients and doctors are a partnership, and must be able to work together as a team. Good and standard risk patients make up 80%, benefiting from novel agents and high dose melphalan/stem cell rescue. 20% are high risk. My goal is to change MM to a chronic illness for the majority, and probably curative for a subset. 85,000 are living with MM in 2015. Your prognosis factors include: 1) tumor burden, 2) tumor biology and 3) patient related factors. Deeper responses to treatment improve overall disease free time. "

Maintenance Strategies (Dr. Usmani) - Revlimid (10mg) and Velcade (sub-subcutaneously) are the two drugs he primarily uses. Revlimid maintenance after ASCT does produce improved overall survival. You get better mileage from Revlimid if you are on maintenance, and don't just use it at relapse. However, it is unclear whether ALL will benefit from maintenance...doctors must tailor the treatment choices. He also mentioned: 1) Ixazomib and Oprozomib 2) Pomalidomide, and 3) Monoclonal antibodies (Elotuzumab, Daratumumab and SAR 65084).

General practitioners need to be taught two screening mechanisms for MM detection in patients over 50: SPEP (serum protein electrophoresis) and FLCS (free light chain survey). Earlier detection is critical. MRIs and PET/CT scans are a much better picture of the bones than skeletal surveys as, according to him, they don't show lesions until 70% progressed (this was shocking news!).

So there you go...our day in a nutshell! It has been forever since I blogged, but wanted you all to know that EZ is well, and continues to be in CR (5th birthday coming up August 25, 2015!). Blessings to all of you! Sure would love to hear from our blog friends. This is us at our son's wedding reception December 20th...dancing the night away!

Happy New Year 2015

I hardly know where to begin, so why not wish everyone a Happy New Year! Right off the bat I'd like to set your minds at ease and say that Big EZ continues to be in complete remission with no detectable M-spike and all other numbers stable. When we haven't heard from fellow bloggers in quite a while, we worry that something is wrong, and often it is. For us, life is just full and busy, so for the most part, a quick Intagram post is about all I can muster! We are extremely grateful that five years post diagnosis, EZ has not relapsed and his numbers continue to look good. 

And now for a quick review of 2014 and four very exciting events in the life of our family: 

1. Our son, Nick, got engaged to the beautiful Anne Davis in March. When EZ was diagnosed in January of 2010, he wondered if he'd live long enough to meet the girl Nick would one day marry. Our prayers were surely answered and we love Anne so much!

 2. In celebration of my 60th birthday, EZ and I took an amazing trip to the Grand Canyon, Hoover Dam, Zion National Park and Las Vegas in April.

 3. We welcomed a new grandson, Will, in May. Big sister, Emery, was beyond excited, and so were we!

Guenthers Christmas 2014

That makes six beautiful grandchildren for us!

 Dews Christmas 2014

4. Nick and Anne got married in Chapel Hill, NC on December 20, 2014!

 The wedding party with EZ serving as Nick's best man. It was such an honor for EZ to stand beside his son on this very special day!

Our five oldest grandchildren all participated in the wedding. Were they ever adorable!

Gigi looks beautiful surrounded by 5 of her great grandchildren!

Beautiful engagement and wedding photos by Robyn Van Dyke Photography

 All Bakers have now married in the month of December, with Nick and Anne marrying on our 39th anniversary! Here we all are at the wedding: Nick and Anne, day one, Leah and Kyle 8 years, Tara and Jamie 14 years, and Ernie and I, 39 years! What a cause for celebration!

 There was so much more to celebrate in 2014, but these are definitely some of the highlights. May you all have a healthy and happy 2015, and hopefully you will hear from us more often! We care very much for those of you who stop by our blog, and would love to hear from you! For now, let's all try to remember these wise words in the new year: