By Elise Renner
There’s a 1-in-12 chance that this is the month yours or your loved one’s cancer is recognized—odds better than the survival rates for some of these diseases. Some months, like October, boast big names like breast cancer. Others, like September, are crowded with lesser-known branches of the disease. “Cancer apparel,” including ribbons and jewelry, is marketed with pretty colors, one for each type of cancer, and sold to raise money as well as awareness. For my dad, I would wear maroon. Multiple myeloma, maroon, March – whoever decided this must’ve been keen on alliteration. This month I am hyper-aware of the disease that took my dad’s life last year, but it isn’t because of a ribbon or cancer calendar.
As the first anniversary of his passing approaches, I find myself in constant reflection. The three-year battle we fought against this disease certainly felt like war for me, my mom, and especially my dad, who stood alone on the front lines. This month marks the day he found peace, but I, and the countless others who have enlisted against cancer, are forever dedicated to the fight. This is why awareness months exist; as trivial as it may seem to assign a color or a catchphrase to cancer, it’s another war tactic. The International Myeloma Foundation has implemented its “Tell One Person” campaign to increase awareness of this lesser-known disease, and hopefully by sharing my story I can arm you with one of the most powerful weapons we have: information.
The beginning
We had just recently moved from Virginia Beach, where we spent our days catching waves and riding bikes along the pier, to the colder climes of upstate New York. Even during the bitter winters, my dad still found ways to be active. He always made time for his favorite exercises during the week, and kept his weekends just as lively, planning fun outings with me and my mom to different museums, amusement parks, and restaurants.
In 2011, the three of us took a trip to Europe. My dad had to go for work-related reasons, but in his mind, the business of family fun came first. He was a rare “type A” personality who also knew how to have fun; he mapped our trip down to the double-decker bus routes, while allotting time for spontaneous exploring off the beaten path.
The day we were scheduled to leave, my parents received a call from my dad’s doctor, whom he had recently seen after noticing unusual, fleeting pulses of pain in his bones. Just hours before embarking on our journey, my dad found out there was an unknown infiltration in every single bone shown in his scan. I think he somehow knew this would be the last chance we would get to make this trip. Staying true to his logical, adventurous spirit, he confirmed with the doctor that nothing could be done right away, and wore a smile on his face as we left for the airport. If he was hurting then, emotionally or physically, he didn’t show it.
My mom, dad, and I were ambitious explorers, and we were excited to make new memories in Europe. But just three days after unpacking our bags, instead of exploring old world treasures, we were repacking and heading home. Struck by shooting pain that coursed the length of his back and neck, my dad had been unable to leave his hotel bed. Forced to face the grim news, we braced ourselves for the impending diagnosis: My dad had aggressive multiple myeloma.
The middle
It was a constant cycle of progression and regression as my dad found his “new normal.” He traded bike rides for back braces, Pilates classes for platelet packs, and mountainous hikes for monotonous trips to the hospital. He underwent two unsuccessful stem cell transplants, one autologous and one allogeneic, countless blood transfusions, chemotherapy, and radiation. The harsh drugs may have thinned his bones and hair, but he kept his mind sharp by making Excel spread sheets of his tumor markers, called Kappa Free Light chains. We watched the number oscillate as his disease progressed. Essentially, it indicated the amount of tumor in his bones – the lower the number, the fewer cancer cells. Sometimes it would be explosive in the high hundreds and sometimes it would waver in the single-digits, but we always held out hope for a lower number.
Inside the stark white hospital halls, my parents would find ways to laugh and enjoy their time together. They played card games, watched old movies, and reminisced. In preparation for his long hours in the MRI suite, my dad would study maps of Disney World and spend his time mentally touring the amusement park as the machine beeped around him. My mom kept meticulous track of the medicines he took, mastering the art of pinpointing which drugs caused the nastiest side effects, which kept him awake, and which courses of treatment would require a full-time caregiver. My mom was always this caregiver, and she devoted so much of herself to his fight, providing necessary comfort and care in a way no one else could. She was my dad’s advocate, his companion on long days in the hospital, and a super-woman for being there for him and still finding time for me.
Even though my dad is no longer with us, this story doesn’t have an end. Sometimes the conversations are hard, but as time goes on, I’m learning how valuable it is to share my family’s experience. My parents always kept me informed through my dad’s battle; I didn’t feel like they were keeping secrets or sparing me painful details, and that meant the world to me. But even after getting all of the available information, it still feels like there are pieces missing: Why did this happen? How could we have prevented it? It’s vital to spread awareness, because you never know who may be able to fill in some more of the puzzle. If you’ve experienced multiple myeloma, skip the maroon t-shirt this month, because by telling just one person you’ve done your part in the fight against this disease.
My Dad also passed from this horrible disease June 18, 2011; he was 76 yrs old. He never took any pain meds and suffered so. We use to beg him to take something for the pain he endured but he refused and we still do not know why to this very day. (Maybe he was afraid of falling asleep and never waking? He despised drugs) His ankles swelled so much he could hardly walk and he weighed a mere 120 lbs at 5′ 10”; his kidneys were shutting down. He died the day before Father’s Day so it’s very hard for us 6 kids when the anniversary of his passing comes around. I guess he had a sense of humor in the fact he never wants us to forget him, as if we would ever. So God Bless You and everyone else who have lost a loved one due to this horrible disease. Diane
Dear Diane —
I am so sorry to hear about the loss of your father. Thank you for connecting with us and sharing your story. Wishing you and your family all the best.
My mother died from this. She developed Amyloidosis (probably misspelled sorry) A lot of people carry the MGUS gene that’s responsible and it’s triggered In some cases to progress to this disease by being activated by something in the environment, usually chemicals. My mother was a custodian for the local school system which for me explained the chemicals that ignited those genes. Your father probably didn’t take the meds for the same reasons my mom didn’t want any……she didn’t wanna sleep her last days away. She wanted to be alive and awake and able to interact with US ……in which she was able to do til a week from passing:-( she was 58
Touched my heart.
I’m 43 years old. Have three kids and two grandchildren. I was diagnosed with Myeloma at 41. Then diagnosed with amyloidosis. A rare g.i. affliction due to the cancer for which there’s no cure. I get little support from family but I have a few friends that ask me how I’m doing from time to time. I was in the early stages when I found out. Thank you for sharing your story. I was very enlightened and am sorry for your loss. God bless you for spreading awareness and your story. I think this disease takes a back seat to other cancers at times because it doesn’t seem many people know what it is when I tell them what I have. Your father was very blessed to have such a loving daughter like yourself. Your friend, Barbara
Dear Barbara–
I am so sorry to hear about your diagnosis and health trouble. Thank you for connecting with us and sharing your story. Wishing you all the best.
My husband John Carter III died almost three years ago from this horrible disease. He would never take pain medications either. He had twenty two parts of his body radiated.. When people, over 500, came to his wake some would say I didn’t even know he was sick. That is how strong he was. He never would let on that he was in pain and lived every day to the fullest. I miss him so much we had been together since we were seventeen, married for 43 years. I appreciate all that Dr. Paul Richardson from Dana Faber and Dr. Michael DeLeo from Pittsfield did to keep my husband alive for 8 1/2 years with this horrible disease. RIP John
Dear Linda —
We are so sorry to hear about your husband. Thank you for connecting with us and sharing your story. Wishing you and your family all the best.
The color associated with my husband’s cancer is bright green. He was diagnosed with a form of Burkitt’s Lymphoma last December. We had never heard of Burkitt’s and really only knew pink was for breast cancer. There is a huge learning curve with cancer and I agree that spreading information is key to fighting this horrid disease. A stem cell transplant is next for us. Thank you for sharing your families journey and I know how you feel, my dad didn’t survive cancer either but I’m praying my husband will. Great is Thy Faithfulness!
Dear Lynn —
Thank you so much for connecting with us and sharing your story. Wishing you all the best with your husband’s treatment and upcoming stem cell transplant.
Elise, thank you for sharing your story and raising awareness to this awful disease. I lost my mom to Multiple Myeloma on June 4, 1995 at 5:19am. By far the worst day of my life. She fought for 6 years through pain and numerous bone fractures. Her goal was to make it to my wedding which she did. Like your dad, she had an adventurous spirit and an immediate impact on everyone she met. She also cared deeply for her family and while its been 20 years, I still miss my mom everyday.
You sound like a great daughter and I’m sure your dad is looking down beaming with pride for his little girl. Take care of yourself and your mom. She needs her baby now more than ever.
Dear AJ —
We are so sorry to hear about your mom. Thank you for reaching out and sharing your story with us. Wishing you and your family all the best.
I was dx May 2012 at age 43. I had a single plasacytoma which I had radiated. I never…and still dont thankfully…had any pain, no signs or symptoms. I lifted a case of water and shattered T7. If it hadnt have been for that, who knows how long I would have gone or progressed with MM. I am not a pill popper and try to do things naturally, but if it werent for science I might not be as well as I am. I had a sct March 2013 and placed in CR last summer. I was deathly afraid to read literature on a disease I had never heard of. Once I could find the courage to educate myself, I read and read and read. Educating myself helped explain to others about MM…because chances are your friends and family havent heard of it either. I am treated at a wonderful cancer hospital with a team of the best MM experts. I thank the manufacturers of these drugs that got me back to my old self mixed in with the new normal. It sucks to have anything wrong, but I believe I will be fine and I am living life every day. Honestly for me and my family, making jokes helps a lot even though we know how serious this is.
Thank you for sharing this story about your dad…it was wonderful to read. I do wear my pink, visit our cancer boutique at work and pray for all cancer families.
You are right, it isnt about the ribbon color, it is about the awareness.
Dear Jennifer —
Thank you so much for connecting with us and sharing your story. Wishing you and your family all the best.
My husband, Roger fought Multiple Myeloma for 4years, and went home to Heaven in May, 2001. He, too, had an adventurous spirit, and a great sense of humor, a very positive attitude, and most of all, a deep faith in God.
He had 2 bone marrow transplants, and was down to 1% cancer in his body, when he contracted sepsis in his port. When we returned home from a fantastic cancer hospital, we found a oncologist in our city. Unfortunately, he ignored my phone calls to say that Roger was struggling to breathe. Therefore, for 3 days the infection grew, and by the time I finally got Roger to the hospital, he died 2 days later.
I am posting this to warn patients and caregivers to investigate their doctors closely. A nurse in the hospital pulled me aside after Roger died to tell me that this oncologist had a reputation for not being careful with his patients, and many had died, even after beating cancer.
There IS hope for MM patients! Many are living long lives now! Best wishes to each of you.
Dear Pam —
We are so sorry to hear about the loss of your husband. Thank you for connecting with us and sharing your story. Wishing you and your family all the best.
I have read your many touching comments about your loved ones. My husband died in June, 2010 after a valiant fight to the very last instant. MM is a horrible disease in the ravages it does to the body. Yet, I know survivors who have come through it and that is the hope we all have. It is possible. And, new medicines and procedures are being developed all the time. Rest Peacefully, Jim. We miss you and love you.
Elise,
Thanks for sharing your story. I’m very sorry to hear about your dad. 14 years ago I started supporting DFCI by cycling in the Pan Mass Challenge…an amazing fundraising event. I’m nearby in Mendon but my wife was being treated at DFCI for a rare sarcoma. It’s been 11 years since she lost her battle. Cancer continues to march on, which is why I ride every year.
All the best,
Bob