Multiple Myeloma

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Multiple Myeloma
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    Community Voices
    Community Voices


    I am feeling overwhelmed today. I have ran errands all day. I come home and want to have a little while to just relax. This NEVER happens. Everyone is so dependent on me to take care of their needs. My husband has Multiple Myeloma Cancer. He sleeps so much. He wakes up, and is ready for me to make something to eat. I am happy to do this. I just get so tired. I do have 4 dogs, that I love and adore. My 4 legged babies bring joy to my life. If I could have one wish, right now, it would be for me to have just one day where I wouldn’t have to take care of anyone but myself. In my situation a wish like this would be so hard to get! I am still thankful that I am able to do what I do.

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    Community Voices

    I had a bad dream last night.

    <p>I had a bad dream last night.</p>
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    Community Voices


    Community Voices

    Lymph pain but not enlarged?

    <p>Lymph pain but not enlarged?</p>
    9 people are talking about this
    Kevin Mwachiro

    What 5 Years of Living With Multiple Myeloma Have Taught Me

    It’s been five years now. Five years ago around this time at the Aga Khan University Hospital, I was diagnosed with multiple myeloma and my life has never been the same. Every October since then, I’ve written a piece to commemorate this turning point in my life, and this time every year I find myself being a little more reflective and I remember the start of my journey and how a new chapter in my life was being written. I’m grateful that I am still in remission and still popping by a daily capsule of lenalidomide as part of my maintenance treatment. I start my 56th round later this week. I’ve realized that cancer makes you count a lot. If you aren’t taking blood counts, you are counting capsules or cycles, but most definitely you count your blessings. I’m also in good shape. Exercising, cycling and lots of meditation have seen me through our global “new normal.” In addition to death and taxes being certain in life, I also want to throw “new normals” in that mix. These “new normals” will come in all shapes and sizes. It’s all part of this journey of life. Each year since October 2015 has been a landmark in its special way and getting diagnosed with cancer is certainly a pivot. 2016 was the most uncertain period and to some extent the scariest. But it was a year of two halves. The first half was battles with the side effects of chemotherapy and not knowing what surprises my body was going to take me through. From the time I started treatment, I began a very different relationship with my body. It was a lot more fragile, but not frail. I felt as though my body was on a trip and I was just a passenger. I was listening to everything that the body was telling me. My mind became an engine because it was the one that fired up that battle. When you hear a cancer survivor say that the battle is in the head, believe them. I didn’t understand that phrase when I first heard it in hospital, but I became a believer very quickly. I bought the t-shirt! This first half of 2016 was also lots of reading and conversations on cancer, about cancer, how to treat cancer, how to live with cancer, eat with cancer, exercise with cancer, work with cancer, making new friends who also have cancer and supporting folks who were supporting those living with cancer. I got to know my cancer and I called it by its name and that helped take the fear out of it. No two days were ever the same — I take that back, rather, no two moments were ever the same. I’ve learned that in this battle you have to overcome the moments to get through the days. The first half was all about kindness. My family and I were showered with kindness from the various other “families” I have in my life. And all these “families” rallied together to see me through treatment. I still don’t have enough “thank yous” to express how grateful I am. I don’t think I ever will. Eating life with a very big spoon and still believing in the fight is how I express my gratitude. Plus, I’m still smiling. “Healing and revealing” are the words that I’d use to describe the second half of that year. Where I willed my body to accept the old-new plasma that had been put into it thanks to the stem cell transplant that I had undergone. I did all I could to build my immunity, wore a face mask, sanitized and kept my distance from people (hmmm, this now sounds too familiar, to all of us). Then there was re-birthing of a voice that had long been shy, a new sense of purpose and the recognition that I only have this life. I’m not one to quote the often tossed about phrase “life is short” because when we focus on its length, we can tend to forget how this life is to be lived. I’m sounding philosophical! See what five years can do to you. I much prefer the phrase, “We only have this life.” The pandemic has really made this phrase even more apt. To move onto 2017, I started to venture into the world of self-employment, more self-care and saying “yes” and “no” more. Yes to stepping out into the water and no to the things that would stop me from stepping out into the water. There were many new firsts that year and a sense of freedom that I hadn’t realized existed. The four-day workweek became a thing. I mentored, taught, embraced the various aspects of my life even more and started putting together the pieces together of the life I wanted to live. There was a lot of discovery in this year and I birthed my baby, Nipe Story. I call 2018 the year of the sea. I packed my things, left the home city, Nairobi and went in search of a simple life in hotter and less toxic climes. I developed a new appreciation of my coastal heritage and fell in love with the sea. I stepped into water and doors opened. I looked at the world with another set of new eyes and realized how beautiful it is. I wore fewer clothes, spending most of my days bare-chested, barefoot only dressed in a kikoy (wrapper). I discovered how little I know about my country and how diverse and rich culturally Kenya is. My Kiswahili, which was too bad isn’t bad any more and my culinary skills have improved. Coconut milk is magic! I discovered how crucial it is to know what “my enough” is. This has changed how I look at material possessions and made me consider what I need in life to be satisfied. There was less fear in me and that had been replaced by my newfound confidence. I became a lot kinder to myself and offered myself a lot more grace. I learned that being brave comes with a price and it thrusts one to the frontline, sometimes reluctantly. Don’t get me wrong, there have still been knocks along the way. Spells of loneliness, impostor syndrome, loss and discouragement. I’ve taken stock of friendships but been pleasantly surprised how life puts kindred spirits in your path. 2019 expanded my horizons, surprised my heart and made me embrace all of my identities. I started seeing myself a lot more for who I was. I am a storyteller, writer, journalist, gay, podcaster, activist and Pan-African. I am middle-aged and this body now takes longer to recover from a night out, heals a little slower, but still needs to be taken care of with a lot more TLC. I am a cancer survivor and that still humbles me. I’ll be honest, there are days I don’t want to know of that friend of a friend who’s been diagnosed with cancer. There were days I felt and still do feel numb when I hear of a cancer death. This is not an easy cross to carry. You have to be in the right frame of mind to receive such news. There were many times I was scared for my family of cancer survivors. Last year, I started the practice of lighting a candle for anyone I know who has died from cancer. I lit it too many times! My cancer-survivor family and I, are a lot braver, very pragmatic and even circumspect about how we go through life now. We all have a story to share. There have been lessons for all of us, I’d like to believe. There’s a lot more gratitude in me, stillness, spirituality, patience and a bigger heart. I’ve been questioning what it is to be a man and I have a brotherhood that is going through this process with me. I’m unlearning, learning and relearning a lot. Adulting has never been easy, more so now when our days, weeks and months are shrouded in uncertainty. I’m also still very hopeful that we’ll get through this year better than we started. I have my scars, hurts, pains and tears from this year, but more than anything, I’m grateful that I’m still here. I’ve been reminded that life is a journey and a gift. Cancer no doubt has changed my life. It has made me recognize my fragility, given me more respect for my body, made me recognize the power of the mind, the safety of my spirit, the beauty of our shared humanity, the need to offer grace to myself and those around me. Thankfully, I’m still on this journey and doing my best to show up as authentically as I can, because I’ve been shown that I only have this life.

    Alison Merritt

    My Mother's Cancer Remission Was Not the Celebration I Expected

    They all ask me “How is she?” “Is she better?” “Is she healthy?” I tilt my head, look at them, and I smile. She is in remission. At this moment in time, the seriousness and intensity of her disease and pain has diminished. My mother has temporarily recovered from multiple myeloma. Multiple myeloma is when cancerous plasma cells accumulate in the bone marrow and crowd out the healthy blood cells. This can cause weakening and breaking of bones. My mother was diagnosed after she drove herself to the emergency room with back pain. The cancer had eaten through her spine. After countless rounds of chemotherapy, medications and a stem cell transplant, she is in remission. Her blood work is normal and her chemotherapy has been cut down to twice a month. Although multiple myeloma is treatable, it is not curable. We know that there are cancer cells lurking in her body, but for now they lay dormant. Remission is not exactly the loud, wild and carefree celebration I imagined. My mother has not bounced back; things are not back to normal. She spent her life working, multitasking and managing it all and now she stays home. She would love to travel, but all the medicine she is on does not make it easy nor spontaneous. She wants to scoop up and run after her grandchildren, but she is still too weak. She used to have energy late into the evening, now she barely sees the sunset before she is in bed. She used to lay in the sun, now the heat makes her sick. Her memory is stunted, her concentration causes her to struggle. The music is not blaring and we are not dancing. Remission is a small, intimate gathering. It is a quiet, calm and thoughtful celebration.  She is able to hug her grandchildren without the fear of germs. She is able to enjoy a visit out of the house with friends. She can stand long enough to cook her mother’s beloved recipe and share it with her family. She is able to watch her grandchildren’s sports and cheer them on in real life. She is able to come to birthday parties and enjoy a piece of cake. We all were able to surround her on her 60th birthday as she blew those candles out, symbolic of another year around the sun. Although the party wasn’t raging and we all did not lose ourselves in the celebration, the moment I witnessed as my mother turned another year older was the most profound celebration I can imagine. The celebration of something not promised feels so much sweeter. Remission may not be exactly what we expected, but we would certainly like to stay for a while.

    Community Voices

    Looking for Help with new therapist which backfired.

    I have a useless psychiatrist at the cancer center where I participated in a 2 year clinical trial for smoldering multiple myeloma. I am still getting IVIG at here monthly and give blood for follow up every 3 mos. The shrink to whom I was assigned keeps telling me to wean off Pristiq and go back on Prozac for relief of depression and ruminative anxiety . I have told him repeatedly that I tried doing this a year and a half ago only to have daily migraines return. I originally went on pristiq because I was depressed on Prozac and having daily migraines. Pristiq doesn’t help my depression but is migraine preventive.
    I’ve told him this repeatedly but he repeats the same thing , as if he doesn’t know anything about psych. meds. I see a trauma psychologist who also thinks he’s useless but doesn’t know any shrinks .
    I was told about another shrink at the cancer center and was excited to get an appt with her , hoping that she could help me with terrible depression, anxiety, and PTSD made much worse by isolation and fear for the past year since covid began.
    I got a call from a psychologist who led a CBT telehealth group that she was canceling the appt with the new shrink and I would be forced to see the useless one again. They are having a team meeting about me , with me included. I am so upset and feel like I am being treated like I committed a crime.
    I admittedly did not think about the politics of the place when I made the appt . Just felt so relieved to have it. Despite having made 100 calls to shrinks in this area, have not gotten one response back . That does not seem to be an option. How would others feel in this position ?
    Sorry for the length.

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    Community Voices

    The Waiting Game

    Monday morning again- this week is probably going to be one of the most agonizing weeks awaiting test results again! On my last trip to my hematologist/oncologist, I related to him the additional symptoms added to my chronic illness reportoire - extreme fatigue, itchy skin,bone-breaking feeling in my long bones ,and muscle weakness- he ordered a skeletal survey,a full series of x-rays of my entire skeleton for today, suspecting
    Multiple Myeloma, a blood and bone cancer! I have suffered from MGUS for almost two decades, a pre-cancerous condition of elevated protein levels in your blood . Myeloma cells eat up healthy red cells, cause tumors to grow in the spine, cause holes in your bones causing them to break, and make it hard to fight off infection with tooany white cells ! The doctor also ordered a battery of blood and urine screenings to determine if the kidney function has been affected, another organ the disease impacts negatively- I don't worry about the actual tests but the waiting is a whole other ballgame! My next appointment isn't until a week from today, and my psyche is already on full throttle with the anxiety rising fast like a new full moon - it's going to be a long, worrisome week ! I've decided to break it up a bit by inviting my granddaughters to come stay for a few nights while on vacation from school- @ 6 & 8 years old, they will distract me and entertain me, I'm certain of that- hopefully, I don't have to call a family meeting on my birthday this year ( Sunday, May 2) to tell my family I have full-blown cancer requiring chemo, radiation and stem-cell transplant - wish me luck, friends,I could really use a boost- thank you all for being there!

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    Community Voices

    Anyone else fully vaccinated but worried about immunity to covid ?

    #BloodCancers I have smoldering multiple myeloma and know my immune system is not normal. I get IVIG to prevent lung infections. Will be getting my antibodies tested as part of a study.