Remembering My Father’s Journey with Multiple Myeloma

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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.

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

  1. 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 !

    Lily

  2. 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.

  3. 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.
    Puls

  4. 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,
    Lehi

  5. I am from India and I lost my dad two weeks ago. He had this same horrible disease but he fought and fougth it bravely for six long years. My heart goes out to everyone who is fighting this disease or their loved one has this..Cancer does not affect the individual but the whole family. I can’t count how many times my dad had to go to hospital and we stood by him . I miss my dad a lot and pray we get the cure as soon as possible

    • Dear Amit —
      We are so sorry to hear about the loss of your father. Sending our thoughts to you and your family during this difficult time.

  6. Dear Elise,I had heard a bit about your father’s experience with myeloma because your father’s brother attends the same Friends Meeting as I do. I was interested because I was diagnosed with MM in September 2012. One thing that your account brings home is that I was not wrong to do things like immediately update my will, financial plan, etc. and cancel some commitments when I got the diagnosis. At that time, I had no way of knowing whether I would have an aggressive disease like your father’s, or a less aggressive one, as I seem to have. Right now my disease is at a pretty low level, and I am doing well, but the odds are that at some point it will progress. You ask: ”Why did this happen?” and ”How could we have prevented it?” I think that at this stage of scientific knowledge, MM cannot be prevented and we don’t have much idea of factors that tend to trigger it. It seems like your father was actually diagnosed relatively early, so the problem was not a delayed diagnosis. He just had the bad luck that the genetics of his disease were aggressive, and often there is not much that can be done to stop it. Some people live an even shorter time than your father did. I am glad you are taking a positive attitude and thinking about ways to help others. In the not too distant future, there are very good prospects that this disease can be managed for most patients, and that at least some can be cured. It is a matter of research funding, the dedicated work of researchers, and the willingness of patients to sign up for clinical trials. A lot of people (at Dana Farber for example) are working on this. Foundations like MMRF, IMF, and Crowdcare have been set up to raise funds for research. And NIH can use more funds to work on this.

  7. U brought tears to my eyes. I lost my father to multiple myleoma on Feb 11, 2011. He was a happy free going person and we discovered the cancer only in the last stage. He didn’t last 4 months.

    He didn’t have to suffer long. In India (where I’m from) treatment wasn’t the best either but they were trying to stop the cancer and failed. 4 years late, I still struggle to cope with him not being around. Thank you for the blog entry. God bless you and give you strength

  8. Hello,
    Thanks for sharing. Reading this today reminds me of why the rest of us should live for today because life is short and things happen unexpectedly. Dr. Anderson at DFCI is the premiere MM specialist and I hear about this annually because I am a platelet donor and he always comes to our brunch and let’s us know MM care is improving. Unfortunately, for you and others we aren’t there yet.

  9. Hi Jeanne, Elise here. I was 13 when my dad was diagnosed and 16 when he passed away (last year). I think my mom was in a similar position as you, feeling unsure about the future and seeing some bad signs. I know it must’ve been hard for her to keep me in the loop when she, as well as the doctors, were so unsure. At times, amidst the little victories and hopeful news, her worries and fears would come out sporadically. Sometimes I felt like I had to read into these little clues, and make guesses on how bad it really was. When my mom would sigh, and her eyes would be red and puffy, I knew the reality was worse than what she was telling me.Although I felt like I was in the loop, all of the information I received was always followed up by something optimistic. Therefor, I didn’t really realize he was dying until it was actually happening right in front of me. Looking back on it, I’m conflicted. On one hand, I feel like my optimism was almost foolish, but on the other hand, I don’t think my mom or I should have been anything but optimistic. My advice to you would be to not keep your children guessing, but also to not let them lose hope for a single second. Easier said than done…but I hope this helps. Good luck and best wishes to you and your family.

  10. Thank you for sharing your family’s story. I lost my Dad to MM in November 2013. He was 67 years old. It was about 7 years from the first unexplainable pain in his feet until he succumbed, having been through multiple rounds of chemo and 2 stem cell transplants in the process. He was excited about being accepted into a clinical trial at Dana Farber after his 2nd transplant, but he never recovered fully enough to be a viable candidate. I miss him every day. I will be running my second Boston Marathon on April 20 in his memory and to keep spreading the word about this awful disease.

  11. Hello Elise, Thank you for sharing you and your Dad’s story. The picture of you on your Dad’s shoulders remind me of my 10 year old daughter Riley and I. I was diagnosed with Multiple Myeloma in the spring of 2010, underwent a stem cell transplant in December of 2010, I continue to take maintenance chemotherapy and I remain in remission. I appreciate you sharing insight to your side of the story as I worry about my Riley. She has taken my disease in stride, she does well in school, has good friends and enjoys her after school activities. I’m the Dad that always carried my children on my shoulders or in my arms. Today I kneel for a hug or pick them up for a quick squeeze. Thank you again for sharing and helping with creating awareness for Multiple Myeloma patients.

  12. Thank you Elise for your heartfelt story……I am sorry your family had to endure this awful disease. My husband is into his 7th year battling MM, he has had 2 stem cell transplants which only lasted 15months each – his is currently on a clinical trial at DFCI and rcvd bads news last week that his cancer is progressing even through treatment – not a very good sign…..my question is how old were you when your Dad was diagnosed – you said you were thankful that they didn’t try to hide anything…..I have 2 children 14 and 11, they know pretty much everything, but have no clue of the severity he now faces, I worry enough for all of us, I don’t want them to worry too, not sure how much to tell them.

  13. I can relate to your experience. Our family lost our mother on July 6, 2004. She endured multiple myeloma and the associated pain with incomprehensible strength and determination. She was a very busy lady, filled with life and laughter, and the changes brought on by this disease were powerful and absolute. In 2004 we vaguely knew of the disease, likely only because it had been reported in the news that some well known person was battling it; however, today it seems that more people are aware of this condition and its effects. While I can still see her smile and sparkling eyes in myself and on the faces of my children, we all miss her every day, and hope for a cure to this terrible cancer.

  14. Elise – Thank you for sharing your story with us. I am so sorry to hear of the loss of your dad. He sounds like an amazing man. I lost my baby brother to leukemia 17 years ago, and my family is now dealing with my dad’s prostate cancer. You are an amazing young woman. Your dad would be so proud of you. Stay strong and keep fighting the fight. I stand beside you and all the others here and everywhere to fight this dreaded disease – Cancer. It will not beat us. God bless.

  15. 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

  16. 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.

  17. 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.

  18. 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.

  19. 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.

  20. 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.

  21. 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.

  22. 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.

  23. 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

  24. 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.
    Puls

  25. Hello Elise, Thank you for sharing you and your Dad’s story. The picture of you on your Dad’s shoulders remind me of my 10 year old daughter Riley and I. I was diagnosed with Multiple Myeloma in the spring of 2010, underwent a stem cell transplant in December of 2010, I continue to take maintenance chemotherapy and I remain in remission. I appreciate you sharing insight to your side of the story as I worry about my Riley. She has taken my disease in stride, she does well in school, has good friends and enjoys her after school activities. I’m the Dad that always carried my children on my shoulders or in my arms. Today I kneel for a hug or pick them up for a quick squeeze. Thank you again for sharing and helping with creating awareness for Multiple Myeloma patients.

  26. Thank you for sharing your family’s story. I lost my Dad to MM in November 2013. He was 67 years old. It was about 7 years from the first unexplainable pain in his feet until he succumbed, having been through multiple rounds of chemo and 2 stem cell transplants in the process. He was excited about being accepted into a clinical trial at Dana Farber after his 2nd transplant, but he never recovered fully enough to be a viable candidate. I miss him every day. I will be running my second Boston Marathon on April 20 in his memory and to keep spreading the word about this awful disease.

  27. Thank you Elise for your heartfelt story……I am sorry your family had to endure this awful disease. My husband is into his 7th year battling MM, he has had 2 stem cell transplants which only lasted 15months each – his is currently on a clinical trial at DFCI and rcvd bads news last week that his cancer is progressing even through treatment – not a very good sign…..my question is how old were you when your Dad was diagnosed – you said you were thankful that they didn’t try to hide anything…..I have 2 children 14 and 11, they know pretty much everything, but have no clue of the severity he now faces, I worry enough for all of us, I don’t want them to worry too, not sure how much to tell them.

  28. Elise – Thank you for sharing your story with us. I am so sorry to hear of the loss of your dad. He sounds like an amazing man. I lost my baby brother to leukemia 17 years ago, and my family is now dealing with my dad’s prostate cancer. You are an amazing young woman. Your dad would be so proud of you. Stay strong and keep fighting the fight. I stand beside you and all the others here and everywhere to fight this dreaded disease – Cancer. It will not beat us. God bless.

  29. 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.

  30. 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

  31. Hi Jeanne, Elise here. I was 13 when my dad was diagnosed and 16 when he passed away (last year). I think my mom was in a similar position as you, feeling unsure about the future and seeing some bad signs. I know it must’ve been hard for her to keep me in the loop when she, as well as the doctors, were so unsure. At times, amidst the little victories and hopeful news, her worries and fears would come out sporadically. Sometimes I felt like I had to read into these little clues, and make guesses on how bad it really was. When my mom would sigh, and her eyes would be red and puffy, I knew the reality was worse than what she was telling me.Although I felt like I was in the loop, all of the information I received was always followed up by something optimistic. Therefor, I didn’t really realize he was dying until it was actually happening right in front of me. Looking back on it, I’m conflicted. On one hand, I feel like my optimism was almost foolish, but on the other hand, I don’t think my mom or I should have been anything but optimistic. My advice to you would be to not keep your children guessing, but also to not let them lose hope for a single second. Easier said than done…but I hope this helps. Good luck and best wishes to you and your family.

  32. I am from India and I lost my dad two weeks ago. He had this same horrible disease but he fought and fougth it bravely for six long years. My heart goes out to everyone who is fighting this disease or their loved one has this..Cancer does not affect the individual but the whole family. I can’t count how many times my dad had to go to hospital and we stood by him . I miss my dad a lot and pray we get the cure as soon as possible

    1. Dear Amit —
      We are so sorry to hear about the loss of your father. Sending our thoughts to you and your family during this difficult time.

  33. 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

    1. 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.

  34. 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

    1. 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.

  35. 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.

  36. I can relate to your experience. Our family lost our mother on July 6, 2004. She endured multiple myeloma and the associated pain with incomprehensible strength and determination. She was a very busy lady, filled with life and laughter, and the changes brought on by this disease were powerful and absolute. In 2004 we vaguely knew of the disease, likely only because it had been reported in the news that some well known person was battling it; however, today it seems that more people are aware of this condition and its effects. While I can still see her smile and sparkling eyes in myself and on the faces of my children, we all miss her every day, and hope for a cure to this terrible cancer.

  37. 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,
    Lehi

  38. Dear Elise,I had heard a bit about your father’s experience with myeloma because your father’s brother attends the same Friends Meeting as I do. I was interested because I was diagnosed with MM in September 2012. One thing that your account brings home is that I was not wrong to do things like immediately update my will, financial plan, etc. and cancel some commitments when I got the diagnosis. At that time, I had no way of knowing whether I would have an aggressive disease like your father’s, or a less aggressive one, as I seem to have. Right now my disease is at a pretty low level, and I am doing well, but the odds are that at some point it will progress. You ask: ”Why did this happen?” and ”How could we have prevented it?” I think that at this stage of scientific knowledge, MM cannot be prevented and we don’t have much idea of factors that tend to trigger it. It seems like your father was actually diagnosed relatively early, so the problem was not a delayed diagnosis. He just had the bad luck that the genetics of his disease were aggressive, and often there is not much that can be done to stop it. Some people live an even shorter time than your father did. I am glad you are taking a positive attitude and thinking about ways to help others. In the not too distant future, there are very good prospects that this disease can be managed for most patients, and that at least some can be cured. It is a matter of research funding, the dedicated work of researchers, and the willingness of patients to sign up for clinical trials. A lot of people (at Dana Farber for example) are working on this. Foundations like MMRF, IMF, and Crowdcare have been set up to raise funds for research. And NIH can use more funds to work on this.

  39. U brought tears to my eyes. I lost my father to multiple myleoma on Feb 11, 2011. He was a happy free going person and we discovered the cancer only in the last stage. He didn’t last 4 months.

    He didn’t have to suffer long. In India (where I’m from) treatment wasn’t the best either but they were trying to stop the cancer and failed. 4 years late, I still struggle to cope with him not being around. Thank you for the blog entry. God bless you and give you strength

  40. Hello,
    Thanks for sharing. Reading this today reminds me of why the rest of us should live for today because life is short and things happen unexpectedly. Dr. Anderson at DFCI is the premiere MM specialist and I hear about this annually because I am a platelet donor and he always comes to our brunch and let’s us know MM care is improving. Unfortunately, for you and others we aren’t there yet.

  41. 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

    1. 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.

    2. 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

  42. 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.

    1. 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.

  43. 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.

    1. Dear Jennifer —
      Thank you so much for connecting with us and sharing your story. Wishing you and your family all the best.

  44. 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.

    1. 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.

  45. 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!

    1. 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.

  46. 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 !

    Lily

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