Remembering My Father’s Journey with Multiple Myeloma

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.

Elise and her dad, Steven
Elise and her dad, Steven

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.

A young Elise and her dad, Steven
A young Elise and her dad, Steven

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.

Elise's dad, Steven
Elise’s dad, Steven

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.

34 thoughts on “Remembering My Father’s Journey with Multiple Myeloma”

  1. Elise,

    Thank you for sharing your story. First of all, your story was the first I came across, and second I find it interesting that this story is exactly a year ago today, as I’m dealing with pain my father is going through right now of having multiple myeloma. I don’t mean to bring up any sad memories for you or anyone else who have comment here. I merely was looking for answers on how to comfort my father from his pains while living a state away. I’m already planning a trip to go visit him soon. I know all I can do now is celebrate the good times of the past and now while preparing for the future.

    Thank you,

  2. Hello Everyone,
    It’s really very emotional to read the posts here. I am deeply touched and I can’t hold back my tears as I am reading these. We are originally from India but I live in the UK. My father was apparently a healthy individual with a busy social life and lots of friends and family who loved him dearly.
    He was quite active and use to go for long walks regularly. In May 2016 he complained of slight breathlessness when walking fast or climbing stairs. But his breathing would normalise when he rested for a bit. My mum took him to a cardiologist who tested everything related to his heart (eco, ECG, holter monitoring etc) and said there’s nothing wrong with him. By May end he started feeling some pain in his knees and back. Mum took him to an orthopaedic doctor who x-rayed him and gave him some medicines. He started feeling slightly better. However again by June 2nd week his pain came back and he was again breathless at times…this time more frequently. This time there was something new….my father had developed bruises in different parts of his body (the type that develops after bumping hard in to something) and also there were unexplained reddish spots on his feet….My parents again went to another cardiologist and were told the same thing….there’s nothing much wrong with my Dad!! His haemoglobin was a bit low and creatinin was a bit high….the doctor assured us that these things happen after 70 (My dad was 73) there’s nothing to worry! These will be ok with a few medicines.
    My parents were planning to visit me in the UK from India in July and we had planned for a trip to some of the non conventional places in Europe that my parents hadn’t been to in the earlier visits.
    Since this trip was coming up my Dad wanted to be fit so on 11th June 2016 he insisted that he gets admitted to the hospital for a full check up and find out what’s wrong with him. So the tests started…and for the 1st couple of days the doctors still insisted that he was fine and he was probably having some anxiety disorder so was “imagining” that he is unwell!! Then they did a ESR and tracked his haemoglobin and beta 2 microglobulin and gave my Mum the news that my Dad might be having Multiple Myeloma and they want to perform a biopsy and FISH test.
    I immediately flew to India and met my Dad at the hospital on 17th June. All his friends and family and I would visit him everyday and I started reading and finding out all I could about MM as to be honest before this we didn’t even know that such a term or disease exist!
    The doctors were supposed to sit down with us on 20th June to discuss the course of treatment. On 19th June my Dad started feeling very restless and had developed a nasty cough. The hospital said that they did an ecg, monitored his sugar, bp etc! Then 20th evening we received that dreadful call in which we were told that my Dad is being shifted to the ICU in a critical state as he has developed a severe chest infection and having MM he is not responding to antibiotics. I will never forget how the hours of 20th night went for me and my Mum with my Dad fighting for his life in the ICU…..and finally 21st June early morning my Dad passed away due Sepsis with Multiple Myeloma.
    He never lost his appetite for a single day, he never lost even 1/2 kg weight, he looked absolutely healthy even when he was in the hospital, he never felt fatigued….and 2-3 doctors could not diagnose him until it was too late!
    All the cases I read on several forums say that their loved ones fought for 2,3,7, 10 years with MM. But my Dad passed away even before the biopsy results came in (the result confirmed plasma cell dyscrasia) all because he had quite atypical symptoms and because of unawareness of the doctors and also because of our unawareness!! We lost the battle even before we could start it!
    The only consolation we have is that he didn’t go through any pain and till his last day he ate properly, spoke with us and walked around!
    In India there’s very little awareness of this disease even in the doctor’s community. There are very few doctors in India who are real specialist specifically in MM. My mission now is to raise awareness so that others having this disease, unlike us, may get a chance to fight it out!
    Thanks for reading my long post.

    God Bless.

  3. My Husband is was a few weeks away form his 48th birthday when he was diagnosed. We have 3 boys ages 14, 13, and 3. He was pulled from work the day of diagnoses because the MRI showed the cancer had eaten away at his L4 and L5 vertebra. How much pain he had been working through for the last few years I can not even imagine. I thought the worst day of my life was diagnosis day then there was tell the kids day and then there was the first day of hospice. I have had o many worst days of my life this year. The chemo did not touch his tumors and left him with sever nuropathey. He also has a tumor in his brain that that has attached itself to the nerves in his eyes. I had to figure the tumor in his brain out for his doctors because it is so rare they had not even considered this was why he was having vision problems. My husband has been animate about being upfront with the kids from the beginning. He was right even though I hated telling my babies their dad was going to die. He has a lot of up and down days and I have to take medicine to cope. I never realized someone could die so slowly. He takes his pain meds and is now on a pump which has made it better. He is use to it now and can interact with the kids but here was an adjustment period. By the way Cannabis high in CBD is the only thing that helps his nuropathy. Morphine does not touch it. Prayers for all of you! This is a hard road to travel. I wonder if I will come out of it with my sanity left in tact.

  4. Hi Puls,

    My Condolences to you and your family . My mom just passed away from MM being in the hospital for a stem cell transplant. She had a complication of intestinal infection which she had no white blood cells to help fight infection. My mom passed away Aug 5th 2016. She was a fighter. She is my world. I love her and miss her very much. I hope you are doing well. Yes, I agree we need to raise awareness for this awful cancer !


  5. Hi everyone, as we speak, my dad’s doctor has given us the news that he does not have any more options left. It’s been 9 years since he first diagnosed. The best way we can describe it is a roller coaster of emotions.
    Never once did I hear him complaint through many rounds of chemo drugs, two rounds of stem cell transplants, and numerous hospital visits.
    As a family we have decided to start home hospice, as the disease is progressing very aggressively.
    My father will be missed but through the years we have forged many memories.
    My prayers and thoughts to everyone whose loved ones are in the middle of the fight, or have passed to a better place.

Comments are closed.