Northern Lights: Managing Fear
Last fall, as my husband and I were getting ready to leave the house, we saw a bobcat walking on our deck. At the same time, we also noticed a large porcupine sitting in a crabapple tree that overhung the deck.
We had never seen a bobcat or a porcupine on or near our deck, and seeing them was unnerving to me, even though we've not encountered these two animals in our garden since then.
Along the same lines, a scary incident occurred along an estuary when we were visiting Vancouver Island last month. We were walking on a pathway about ten feet above the waterline when we saw maybe ten grey shadows under the water moving in unison towards us. Just as we realized that the shadows were a herd of seals chasing something, red blood spurted in the water as they caught and ate a fish. Three seals then swam up on the bank and stared up at us with their big round eyes.
I was totally unnerved by this incident with the seals for at least two days, and the experience made me think of times when having multiple myeloma frightened me very much. It was difficult for me to cope with the concept of having a destructive and life-threatening illness.
Back in 2009, a strange onset of crushing back pain only got worse over time and culminated in extremely painful vertebral fractures. The pain and fractures led to my diagnosis of this relatively rare blood cancer, and after the diagnosis it did not help me much to read a lot of predictions as to where it would ultimately lead. Some people who had known someone with myeloma also told me how deadly it was, which frightened me. If it were not for the new drugs available, the stem cell transplant, and the really good care I received, I don’t think I would be doing as well today.
Fear threatened to overwhelm me at every stage of the treatments, even as recently as last October when I started treatment again.
In hindsight, I can say that it definitely was a fear of the unknown. The actual treatments were not quite as bad as they seemed in my imagination, and they helped me to diminish the myeloma. In addition, I had very supportive family and friends helping me to get through all of this.
In the world of nature, animals must always be on the alert for danger. In our human world, we have to deal with danger as well and must be aware of our surroundings, which for those of us with myeloma includes our blood test results.
The best thing for us, however, is not to worry all of the time, lest we overwhelm ourselves with stress and fail to see the good things in life.
Since at its best being a myeloma patient can be a long-term prospect, I have learned to manage my fears by working around my treatments.
I know when the drugs I need to take affect me the most, and try to rest more at those times. Now that I am getting Darzalex (daratumumab) every four weeks, I realize that the ‘treatment week’ is when I am at a low ebb. My immunities and energy levels are at their worst. Since I know this, I am able to look ahead and plan my time in the short term.
My dexamethasone dose has been lowered now, so I don’t feel the effects of that drug as much, yet I am a bit more tired. I don’t bounce back from the dex as I did before. Maybe I am just getting older and more tired, but it is difficult for me to know that. I think, though, that I have less energy than others my age who do not take medications for a chronic condition. However, I am really grateful that I am able to a large extent to participate in my life as it was before. Currently I am enjoying videoconferencing with my support group, needlework guild, and choir. I have not had to drop all of my activities due to the treatments or because of the pandemic.
Thus, the concept of ‘fight or flight’ has been lessened for me because I can plan ahead. I can reduce the fear factor by telling myself that whatever is the worst, and it is not that bad actually, will pass, and that my cycle of treatments is manageable. This is a great relief to me.
───────────────── ♦ ─────────────────
The quotation for this month is from Marie Curie (1867 – 1934), a Polish-born French physicist and chemist, who said: "Nothing in life is to be feared. It is only to be understood."
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Related Articles:
- Northern Lights: Trying To Make Plans In Advance
- Northern Lights: Coping With Treatment Again
- Northern Lights: My First Six Weeks On Darzalex, Revlimid, And Dexamethasone
- Northern Lights: Myeloma Treatments And Tolerability
- Northern Lights: An Update On My Treatment With Darzalex, Revlimid, And Dexamethasone
Great article and glad you are doing well. The same can be said for our current situation with Covid-19. We need to be careful and smart about it, but at the same time not be so fearful we are frozen in panic. If any good has come out of this pandemic, it's that I'm so thankful for my friends and being able to go anywhere at any time. How I long for those days again!
Nancy,
Your story hit so close to home for me. I was diagnosed with multiple myeloma in July 2020 after experiencing spinal fractures as well. Prior to this, I was very active, exercised, gardened, etc. As I read about multiple myeloma, I’ve been overwhelmed by fear of the disease, treatments and their side effects and impact on my life as well as on my husband and family. And because I am a planner, I often feel paralyzed by these unknowns. Your comments in how you approach dealing with your treatments and plan around them are very helpful. Thanks for such an insightful article.
Thanks, Nancy, for another well written article.
I was interested to read your thoughts on how fear plays into dealing with this disease. I try to be calm all month long until I have a doctor appointment and labs. When I was first diagnosed, I was totally shell-shocked. I thought I had exercise-induced asthma, which was causing my shortness of breath. No such luck it turned out, I had smoldering multiple myeloma! Talk about fear! Of course, the Internet was no consolation as I quickly learned that my days on this planet were numbered in a handful of years! Long story short, my fabulous doctor filled me with great hope as to all the new medications that were being approved and the great strides the medical world has made in the study of this disease. My fears lessened.
The stem cell transplant allowed me to be in remission for four and half years. As recently as this past July, I relapsed, which was another cause for fear. I’m now on a new treatment plan, which involves Darzalex, Pomalyst, and dexamethasone. I’m at the point where I get an infusion every week for eight weeks. It sounds as though you’ve done this, too. Fear of the new drugs caused a bit of stress, but I seem to be tolerating them well. The neuropathy is still something to contend with, but as long as I can avoid having it in my hands and fingers, I figure life is good. Like you, I have a pretty normal life, doing things I enjoy. It’s funny how we learn to adapt to our “new normal” and think nothing of it. Each new fear is something to be conquered. We are, indeed, warriors!
Thank you for putting into words the feelings I’ve had that I try to keep to myself to spare my spouse from worrying also.
Dear All, Thanks for the kind comments.
Susan – I also have noticed that we have to try to work around the Covid-19 restrictions and hope for the best, without being too fearful. By following guidelines and realizing that as cancer patients we are more at risk, we may be able to dodge this virus!
Judy – You are such a recently diagnosed patient, and thanks for writing. My spinal fractures gradually healed and I did take bisphosphonate treatments for bone building for over two years. I am careful about lifting and trying not to fall and haven't had any more fractures, thankfully.
Patty – I agree with your perspective on myeloma. I just have some neuropathy in my feet and get cramps in my hands too sometimes. Every four weeks now I get an infusion of Darzalex, and also take Revlimid plus dexamethasone. This seems to be working to control the myeloma.
Nancy - Thank you for sharing about your fear. Fear is something we all experience in big and small ways, but often we dress it up in other words. You are so right about fear of the unknown. It is far better to understand what we are facing than to have to wrestle with a mysterious force that can take on a life of it’s own.
Best,
Sara
Hi Nancy,
I so enjoy reading your columns. The fear of the unknown resonates with me right now as I'm staring down the barrel of beginning treatment. It recently occurred to me that I do better when I can identify things that I can control, since there are so many things we can't. This is empowering for me. And it gives me hope when I am reminded of people like you who have been through it all and are still going strong. Thank you for sharing your wisdom and insights.
Dear Sara – Thanks for your comment. I learned that if I at least acknowledge my feelings, then I could hopefully deal with them. I remember that the first autumn when I was getting treated for myeloma, I was even scared of Halloween! Now I just focus on Thanksgiving in the fall, since that is a positive type of holiday.
Thanks Else, I am flattered by your comment. We can't know the future, but hopefully when and if you start treatment, it will be manageable for you. The drugs and treatment regimens continue to improve and I've also had a positive experience with the medical staff responsible for my care.
Your thoughts come at a particularly scary time for me. when on a treatment, we cannot know if it is working and must wait for labs, then to find out it didn't bring down the myeloma is extremely disappointing. Old myeloma like mine (2008) brings on unexpected infections, which can happen more often now. More antibiotics and more rest. I feel morbid a lot now and have asked for counseling, even though I am now on a new treatment regimen with Xpovio (selinexor). I just don't know what it is doing to be helpful. Fear of the unknown. I try to look each day for my favorite distractions.
Thanks, Suzanne, for your comment. I am sorry that you are worried about the Xpovio treatments. I think it is a good idea to seek counseling. I hope that your distractions are helping you to stay calm, and best wishes.
In July 2019, I had shoulder pain and during a routine x-ray the radiologist discovered bone lesions. Three months later, I had started treatment for multiple myeloma. The shoulder pain wasn't related to myeloma, but it did cause the doctors to find it. I was diagnosed at early Stage 1 with light chain myeloma. My blood ratio was 91-1 at the time, but at 50 years of age, I was still way below average for someone being diagnosed.
Since then, I have been on a two seperate treatment regimens in preperation for an autologous stem cell transplant (ASCT) in two weeks. The hardest part is not knowing the future. It took nearly two months before I realized that I still had a long time left. Searching the Internet for information only made things worse for the most part, but it is good to see some places where hope is given.
I am naturally frightened by the ASCT, and although most pull through, so many things can happen. Like my treatment regimens, I am assuming that my fear is going to be worse than the actual procedure and, in a little over a month, I will be home and trying to live as normal a life as possible.
I have convinced myself that I dont need to hope to live 25 years with the disease; rather, just live long enough for a cure that may be only 8-10 years away. That seems to make things easier to cope with.
Thanks for sharing your story, Danny M. I think it is probably correct to think that there may be more of a cure within a decade. My current oncologist has been saying that over the years. At the time I did not believe it. I personally know a very few patients who are past the 20 year mark already, and who started out without the benefit of our newer drugs, or a stem cell transplant. At the time of my diagnosis, that gave me hope for the future also. I am truly grateful, for example, to be receiving one of the newest treatments, Darzalex, since for myself it is working well.
Because you are a younger patient, you have more strength and a stronger immune system too than you would have if you were diagnosed at an older age. So you should do alright with your upcoming treatments. I was just terrified to have a stem cell transplant, but I was told the mortality rate is very, very low, so that convinced me to try it. Good luck with everything!
Nancy, thanks again for another great column. The quote you chose for this month speaks so well to what may be the biggest challenge for myeloma patients and their families: the challenge of setting aside fear and finding a way to live with myeloma. Your example is testament to the fact that it can be done! One can still find joy in life after a myeloma diagnosis.
I always find your optimism encouraging, and I strive to learn from your wisdom. Thank you!
Dear Tabitha, Thanks for your kind comment! I think that when I was first diagnosed, with broken bones and a really high amount of monoclonal proteins in my blood, I had good reason to be fearful. After getting good treatments, and being put into almost a remission, I still felt very nervous about the disease. People do sometimes comment that we patients cannot 'ring the bell' of stopping treatment (I was able to do that after receiving radiation treatments for breast cancer though). At least in my experience, the treatment for myeloma has been ongoing, although with breaks during the last 11 years. But in order to have a happy life, I have to try to squelch fear. Sometimes fear can become a habit, which is not good for one's mental health.
Get new Myeloma Beacon articles by email.