Living and Learning with Multiple Myeloma

Several months ago, I received a sad email notifying me that a fellow nursing colleague had passed away. Rosemary was the one of several colleagues who had been diagnosed with cancer. She valiantly battled multiple myeloma for over eleven years. For the rest of the day, I found myself sad and unable to concentrate. Life seemed unfair. Rosemary had received chemotherapy, radiation and a bone marrow transplant, but never complained. She was always upbeat and willing to help anyone. When she discovered that I too had cancer, she was most supportive, her gentle smile conveyed sincere caring. Losing a loved one or friend is never easy. It is important to keep your sense of perspective while maintaining your friend or loved one’s memory. Loss is an incredible blow to the body and mind. It takes a long time to even wrap your head around the absence of the person you once knew. It is ok to have feelings of deep sadness, numbness, detachment and anger. One may also experience survivors guilt, as you are alive and your friend or loved one is not. I found that you must acknowledge it and give yourself time to process it. Tips for coping with loss Here are some strategies to help deal with the loss and retain their memory alive in your heart. Think of the good times. Remember memories of the things you shared together. Accept help from others. Talk with friends and family. Do things that remind you of your friend or loved one. Rosemary had a very dry sense of humor, I would remember her comments and smile. Allow yourself to feel sad. The loss of a friend or loved one affects each of us in a different way. It is painful but eventually will lessen. Try to get enough rest and sleep. You may consider soothing, relaxing music or relaxation tapes if you find it difficult to sleep. Try not to isolate yourself. Do things you like to take your mind off the pain of loss. Distracting your thoughts for a while will not make you forget your friend or loved one. Dwelling on your pain will not honor your friend or loved one’s memory. Instead, remember your friend or loved one as you enjoy your life as he/she would have wanted you to do. Consider doing something in your friend’s honor. Rosemary suffered from multiple myeloma, so I plan to participate in the “Light the Night” walk in her memory, a fundraiser for the Leukemia and Lymphoma Society. I am sure that there will still be tears when I think of Rosemary as she will be sadly missed. The above strategies have personally helped me through this grieving process. I will think of the positive contributions Rosemary has made to my life and try to make similar contributions to the lives of others. I will be grateful that I awoke this morning feeling well. Spread your smile as you go about your day, it can help someone else and make you feel better as well. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] A few months ago, I was talking with my nephew on the phone about his recent bicycling adventures. Riding is big in my family. I told him that I was recently in my garage and was looking at my commuter bike. This is the bike I rode to and from work every day before I was diagnosed. It was on this bike that I started to feel unwell. As I looked at my bike that sat in my garage doing nothing but collecting dust, I pondered getting rid of it. Setting it free to once again help someone feel free, with the wind in their hair. I told my nephew that I couldn’t even imagine riding it again. I said I was worried and afraid to get on the bike again. Years of steroids have weakened my bones and thinned my skin. Blood thinners made it so that with any little scratch I bleed and bleed. I was worried that I’d crash or get hit by a car and my brittle bones would break or I’d bleed and bruise to a dangerous level. Additionally, I was even concerned that just the act of riding itself might damage me. My nephew’s response was to hold onto my bike, that I might get the itch to ride again. My wife heard our conversation and agreed that I might overcome these fears and ride again. Getting back on the bike Also around this time, my right foot was giving me pain. It’s a long-time injury that acts up now and again. Rest allows it to recover, meaning I’d temporarily have to shelve my long walks and hikes. For exercise, I began riding an exercycle that also sat dusty in my garage. I started with easy 30 minutes sessions. I felt my legs churning and my muscles smiling. I decided on one of these sessions, that I’d get back on the real bike soon enough. I set a goal of getting on my bike and riding to my old office building to celebrate my ten-year cancerversary. Seemed very apropos. So on May 2nd, I dusted off my bike, pumped up the tires, lathered my neck and ears in sunscreen, and headed down the street on my bike. It’s a ten-mile ride to my old work. Some might say, it’s silly to make my first ride in several years be a 20-mile round trip. I told folks it’s flat and I’ll ride slowly. My wife tracked my ride on her phone and we had a couple of meet-up spots along the route. She was in her car. As I approached the building, emotions built up in me. Unexpectedly, this was more momentous than I had expected. I also was unprepared for how great it felt to be on my bike. It was freeing. It was exhilarating. It got me over my fear. I kept my head on a swivel to avoid any potential dangers. I held on to the handlebars tightly. It was wonderful. The mental hurdles of myeloma My wife and I arrived at the building at the same time, with one glitch. The building was gone. What? It had recently been torn down. We had no idea this was happening. Nothing was there, other than an empty gravel-covered lot. But even that felt appropriate. I was still around and had outlasted the building. We did a photoshoot along the fence surrounding the area where the building had been. We then stopped for breakfast and my wife asked if I wanted a ride in her car to home. Nope. I needed to complete the journey. And I did. I was tired but fired up. I was alive and had fallen in love with my bike all over again. I’ve ridden a couple of times since May 2nd and it’s been great each time. I’ve always felt like the mental challenge of myeloma is almost on par with the physical challenges. And for me, I had never considered certain mental hurdles that I’d be facing. For instance, I never thought I’d be afraid to get on my bike. But I did it and facing that fear has given me a giant mental boost. It’s almost as if my balky foot had sent a message to the rest of my body. I heard that message and filtered out the negative messages coming from my brain. Finally, I must say that, for me, setting goals is hugely important as I continue to fight my blood cancer. Lately, I’ve been singularly focused on ten years and thus have no idea what to do for the next one, five, or ten years. I’ll come up with something. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] It wasn’t me who thought of this clever double meaning to a much-beloved word in cancer circles. Instead, it was my high school English teacher, Mrs. Bruns. She has been a steady source of support since my myeloma diagnosis with her frequent cards and notes of encouragement. It was her handwritten letter at Christmas in which she casually brought the word to my attention. She pointed out how remission becomes “re-mission, a new mission, or a re-thought mission.” English teachers must love dissecting words like we math teachers do algebraic equations. In any case, how had I overlooked this word before, so obviously pregnant with powerful and personal meaning? Hoping for a blissful remission Since early on in this journey, I’ve written about the new lease on life that cancer has offered me. I’ve talked about letting go of past hurts, exploring passions, and finding my new calling -- my unrealized life’s mission. Surely I must have written or at least thought about this already. But I hadn’t, and truthfully, those re-mission feelings came more easily right after diagnosis. I was living at Hope Lodge in a large, supportive community. Between being away from home and having a full-time caregiver, I had fewer chores and less responsibilities. I was thriving on the novelty of the situation and the time to rest, relax, and recover. Other than showing up for infusions and appointments, I had no reason to be productive. I had all the hope in the world that after my induction cycles and stem cell transplant that my life would be better than before. I’d find my knight in shining armor, land the job of my dreams, and live blissfully in remission until they found a cure for this disease. [forumStarter id=16617] My remission reality As grateful as I am to be in remission, it hasn’t been nearly as novel and restful. Now at home, still single and unable to work, I balance rest and recovery with needs of the house, yard, dog, and kids. Remission means daily oral chemotherapy for maintenance, which brings with it an even heavier dose of fatigue and GI issues. It also means monthly blood tests to make sure I’m still there, in remission -- a club where I pay the dues, and every month check to see if I’m still a member. I haven’t felt as strong of a life mission since remission. That initial compelling drive to discover my purpose has yielded to merely finding an acceptable quality of life. Plans are made with contingencies, passions are explored from the sofa, and goals are continuously tweaked and fine-tuned. Some days, the mission of remission feels like a quest solely for survival and longevity. We don’t need a remission for a re-mission But as the word itself so beautifully reminds us, remission could be about so much more than simply survival. Remission offers us a time to pause, reflect, regroup, reassess, and reprioritize. We can ask ourselves: What do we want our lives to stand for? Which relationships do we wish to nurture? What elements of our lives will we bring into our future, and which would be better off left behind? We can reaffirm our commitments, revise our goals, rearrange our priorities, and reshape our futures. And while remission is a wonderful gift, none of us needs a cancer diagnosis nor a remission in order to seize the opportunity to recalibrate our lives. Each of us was born with a terminal diagnosis and an unknown expiration date. Yet even our finite amount of time contains boundless moments to embrace physical, emotional, and spiritual renewal, even as we deal with discomfort, grief, and uncertainty. We can always choose to keep our eyes on the silver linings, even as they are blurred with our tears. I can't think of a better re-mission for remission. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] Several years ago, I was single but still hopeful that I would find a life partner and possibly even get married again. Then came the myeloma diagnosis. The word ‘incurable’ felt like a ‘till death do us part’ pronouncement - an arranged marriage in which I had no say. I also felt it would greatly reduce the chances of finding the man of my dreams. Now, years later and still single, I can find some humor in seeing myeloma as my inhospitable partner in a difficult marriage. As I began to write an article about this ‘marriage,’ I realized it would be much more enjoyable (and challenging) as a poem. I hope you find it more fun to read as well. Married to Myeloma by Ramae Hamrin Three years ago I did not have a beau (and was even quite happy that way), when I met a man who reached for my hand. I tried to pull it away. He asked me to dance. I said, “Not a chance,” But he wouldn’t take no for an answer. “Please leave me alone. I have pain in my bone, and I’ve never been much of a dancer.” I tried to escape but fell over a gate and fractured my upper left hip. I lay on the floor as he stood in the door, watching me holler and yip. I got up and away, much to his dismay, and happy to leave him behind. But the very next week, I let out a shriek when I realized he was maligned. And then on a day in the month before May, I had just gone under the knife. I had no choice. It was the oncologist’s voice that pronounced us husband and wife. Not even a ring, just a pinch, poke, and sting, and a plasmacytoma in my femur. Those were the gifts that started the rifts with my new hubby, the schemer. And so it began. I looked at my man and sniffed his sickly aroma. I began to grieve. I couldn’t believe that I was married to myeloma. It broke my heart. Till death do us part. He wasn’t the prince I wanted. What had I done? I had already begun to see my marriage as haunted. I felt so much doom. Such a terrible groom, he spent my hard-earned money. He racked up the bills and forced me to take pills. Not once did I think he was funny. He doesn’t read books. He won’t learn to cook. He only gets in the way. He causes me pain while he watches me strain to just get through the day. He wakes me at night, but it’s no use to fight. He pretends to be asleep. He’s such a pain. I try to explain that his hurt is sharp and deep. I would leave if I could. It would feel so good to leave the strain and strife. But unless I’m mistaken, I’m already taken, and this marriage is for life. If I found a nice man and came up with a plan, I would so happily stray. But he makes it hard. I’ll have to catch him off guard if I want to sneak away. Besides, he’s possessive and sometimes aggressive. Others don’t want to come near. His threatening display makes them stay far away, and they do so out of fear. Till death may us part, but he won’t have my heart no matter how long we’re united. I will do my best to feel happy and blessed, though his love shall remain unrequited. As bad as it’s been, through the thick and the thin, he has taught me a lot about life. I’ve had to slow down and take the long way around to become a happier wife. So I will endure while I hope for a cure and an official divorce diploma. I’ll use humor to get through. It’s what you have to do when you’re married to myeloma. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],It’s always great to hear about the new drugs that have made their way into the myeloma treatment spectrum. I know all too well that wasn’t the case over ten years ago. There holds a slight glimmer of hope for the future. I recently hosted a multiple myeloma event and upon reviewing certain terms I felt a wave of some un-clarity. I’ve been on this roller coaster a little close to 13 years and some of the terms thrown my way or within the myeloma community can sometimes go over one’s head. Do you hear of myeloma terms and are unclear what is happening and what is everyone talking about? [poll nexus_id=19247] What does ASCT mean? An autologous stem cell transplant uses healthy blood stem cells from your own body to replace your diseased or damaged bone marrow. An autologous stem cell transplant is also called an autologous bone marrow transplant.1 Laymen’s terms: Many people I’ve met refer to this simply as SCT, or stem cell transplant. In a nutshell, our cells are collected and stored (harvested) in case a transplant is needed down the line. Once you and the doctor move forward with this form of treatment (intense chemotherapy) those cells harvested prior are infused back into the bloodstream to rebuild your bone marrow to create new blood cells. What is CAR T-cell therapy? Immunotherapy involves genetically modifying T-cells to activate the immune system to recognize and destroy certain cancers. Chimeric antigen receptor (CAR) T-cell therapy is also known as CAR T-cell therapy.2 Laymen’s terms: This is new wave immunotherapy that focuses on individual cells rather than all cells, where some of your white cells are removed and treated. The premise is to allow T-cells to recognize antigens at the center of cancer cells and activate them to be capable to kill the cancerous myeloma cells. The treated cells are then re-entered back into the body. [thisOrThat id=16600] What is CRAB? The acronym CRAB summarizes the most typical clinical manifestations of multiple myeloma, these being hypercalcemia, renal failure, anemia, and bone disease. CRAB can be used to distinguish between active, symptomatic multiple myeloma, and monoclonal gammopathy of undermined significance or smoldering myeloma.3 Laymen’s terms: CRAB is the usual indicator that tells how and if your myeloma is progressing (active) or stable. It is staged with the four highlights in mind: C = Calcium, high calcium levels mean hypercalcemia which weakens the bones and causes kidney issues, R = Renal, or better known as creatinine elevated numbers are tell-tale signs of possible kidney disease, A = Anemia which alerts to a low hemoglobin level and therefore a lack of iron and red blood cells, that lead to fatigue and dizziness, and B = Bone issues with the bone and usually showcasing lytic lesions, compression fractures, and osteoporosis. What is a chronic condition? Chronic diseases are defined broadly as conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both. Chronic diseases such as heart disease, cancer, and diabetes are the leading causes of death and disability in the United States.4 Laymen’s terms: In a nutshell, our condition is a long haul. The time to fight is now, with integrity, grace, hope, and a smile….when you feel like it [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"]

Living and Learning with Multiple Myeloma

Thoughts About the Loss of a Loved One or Friend

Leaping A High Mental Hurdle

Finding Re-mission in Remission

Married to Myeloma (A Poem)

Deciphering Terms

Multiple Mets and No Primary

Depression is the Pits When Dealing with Blood Cancer

Belonging

By the Numbers