Myeloma, Party Of Two: Ringing The Bell
For many myeloma patients out there, the challenges of weekly treatment infusions can create an onerous burden for both the patient and their caregiver. What an understatement!
It’s been tough lately. It’s hard to explain to people that you can put up with almost any treatment for a short time, but that becomes significantly more challenging when you don’t see an end in sight.
With mixed feelings I hear patients “ringing the bell” to signify the end of their treatments at our cancer center. While I’m happy for them, we’ve never rung the bell. My husband Daniel went straight from induction therapy to chemical relapse to chemo-mobilization, stem cell transplant, and now a maintenance regimen that includes weekly infusions of Empliciti (elotuzumab) along with Revlimid (lenalidomide) and dexamethasone.
We didn’t even get to enjoy off time that comes with the usual two-week dosing of Empliciti because Daniel’s increasing M-spike and free light chain ratio made it necessary to put him back on weekly infusions in order to control his myeloma.
The good news is that he has reached a partial response now that his M-spike is 0.08 g/dL (0.8 g/l). The bad news is that his doctors have no plans to take him off this combination. They feel he should stay on it until it stops working. At that point, he most likely will be put on some other infused treatment to keep his myeloma under control as long as we can.
So, in other words, there’s no end in sight. This is what life looks like for us now. We may never ring the bell.
All the weekly trips to the cancer center, missed time from work, inability to travel, failed IV sticks and blown veins, and unpredictable lab results feel like we’re walking in a long, dark tunnel absent of light.
But, of course, when the alternative is to have untreated, potentially uncontrolled and resistant myeloma with a short life expectancy, you “accept” the way that treatment takes over your life, even when you’re not the patient. This is why I have developed a silent resentment for myeloma over these last two years.
Recently, I read an article that posed the question: What could be more precious than being free to live and grow honestly? The article maintained that many people skip the hard work of examining themselves, embracing both the highs and lows of life, and that not doing so stunts one's growth. Most people want to be fully developed, but they don’t want to do the tougher work of honestly dealing with the tragedies and difficulties of life along the way.
Could this be the key to finding peace with our life, I wondered? Have I been honest with myself about my experience with Daniel’s myeloma and what it has done to me, personally, as a caregiver?
The truth is, I don’t think that I have. I have never wanted to make this about me, because I am not the patient. So, historically, I have lived for and through Daniel’s experience with his myeloma. I have been in “act and react” mode, working as my husband’s advocate, trying to prevent problems and fix our lives when things go off the rails. I project my feelings – all my worries, anger, fear – through my husband’s experience.
I “proactively worry” and obsess over every aspect of his care. I go to every visit, lab, and procedure. When he is hospitalized, I live in the room. Thus far, that equals about ten times this year, if you include ER visits. I anxiously watch the nurses insert IVs, track his appointments, double check his meds, ask questions about his plan of care, and act as his advocate.
I have done these things, even when my husband has asked me to stop.
What I have not done is be honest with myself about why I am doing this or how this experience affects me personally.
Of course, I want to see Daniel get the best care. I feel that this is my most important job as his caregiver. But aside from being a caregiver, I am a person without cancer whose life has been irrevocably changed by cancer.
I resent multiple myeloma. I hate what it has done to our lives. I hate what it is doing to my husband. I hate what it has done to me, and the stress that it brings to my life every day.
We hear that caregivers need to give themselves a break. They need to take a break from the routine to recharge their batteries and de-stress. But, in my case, it’s easier said than done. If I were honest, I’d admit that I don’t want to let go. I don’t want to leave his side, even if it would do me good to do so.
Like the holes it bores into patients’ bones, myeloma can bore holes into the lives of caregivers as well.
At the end of the day, Daniel can get through treatment without me being there. If I cannot be honest with myself about that, then myeloma wins even if the treatment works. If I cannot seize Daniel’s myeloma, I should loosen my grasp.
I look forward to the day when maybe we can ring the bell and his treatments will be over. Maybe, against all odds, we can go back to joyful living away from the cancer center. Hopefully, when that day comes, both of us will be “healthier” for it.
Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diagnosed with smoldering myeloma in 2012 and active (symptomatic) multiple myeloma in 2018. You can view a list of Tabitha's previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Well said Tabitha. Hugs and good wishes to you and your husband. I too am a caregiver and everything you said made me laugh and cry at the same time. Life is extremely difficult for us carer's and unless you've been in this position, you simply don't understand.
My husband has just undergone his third stem cell transplant, which included 8 weeks in hospital. Everyone thinks that it's great now he's home and how easy it will be for me not to have to drive 45-60 minutes each day to visit him for 4-5 hours! I'm more exhausted now than before. The constant worry and dedicated 24 hour care is now on my shoulders yet again.
Do we ever get to ring that bell?
Take care my fellow carer.
The first time I heard the recently installed bell rung in the blood cancer infusion suite where I’m treated, I cried. It was because I knew that treatment would never be completed for me. I would never get to ring the bell.
I mentioned this to one of the nurses. She told me that for us the bell was there for us when we had something we wanted to celebrate. It could be for good lab results, something in our lives that we want to commemorate, anything.
The next week when I came for my infusion, the nurses had arranged a bell ringing ceremony for me. They said that it was to commemorate the number of years that I was coming in for treatment. They all gathered by the bell while I practically rang the bell off the wall. It was such a wonderful release.
I was exactly like you from diagnosis to my husband's final day. We never rang the bell either. Trips from home to the cancer center were often daily and, depending on when we left the hospital, could take six hours of traffic to get back home only to return in the morning. The choice was taken from us when he passed suddenly from a pulmonary embolism on the day hospice was to begin. Finding what my life is about without him has been the hardest thing I've ever done, including fighting multiple myeloma alongside him.
Wishing you all the peace and strength there is to be had while fighting this horrible disease.
This is a powerful article. I have followed your column closely because my husband also has smoldering multiple myeloma. He started treatment as part of a clinical trial in August. It is an intense treatment protocol. I have been to every appointment, reviewed and charted every lab, prepared written lists of questions for the doctor visit days, etc. I think there is a sense (at least for me) that being super-organized, super-knowledgaable, and fully present, will matter in the effectiveness of the treatment. Our behavior is the only thing we can control, and we hope our efforts will 'spillover' into outcome. You have been through the wringer and I appreciate you insights. You help me.
Tabitha, I'm so very sorry about all that you and Daniel have endured, and I have to admit I've been jealous of my friends with cancers that have been able to ring the bell or be able to say they're cured because of a stem cell transplant. Myeloma is a cancer of a different color, and we run a marathon. I totally get that you don't want to leave your husband's side. I just hope that there is someone that can stand in for you that you trust, that Daniel trusts, so that you can get some time away. I just hope you can get your mind off things for long enough to get a reprieve.
Take care, both of you, and I'm praying and rooting for you!
Dear Tabitha,
My heart goes out to you in so many ways. I can’t imagine how tough it is and how hard you are trying. I don’t have any words of wisdom, only to be kind to yourself and maybe sometime soon the myeloma will hibernate and the bell can give a tiny ring for you both.
Much love.
Dear Tabitha,
Thanks for being so open about how difficult it is to be a full time carer for your dear husband. I just hope that you are taking enough time for yourself and can get some walking done, or a craft or extra reading. If I can get my mind off of medical matters, I don't worry so much, and I am sure that is true for my husband as well. He is always there for me, but needs to take time for himself also, if you follow my drift.
I have seen the bell ringing opportunities twice at our cancer center. There is a bell for the radiation unit. I rang that after receiving about 20 treatments for breast cancer three years ago. That was cathartic. I also stuck a ribbon onto a board (it seems a bit silly in retrospect). Then a few weeks ago, in the treatment center, a bell rang as a man finished his treatments. The other patients clapped for him. Knowing what I do now about cancers, I view this as being not as permanent as a patient might think. I guess we are used to the recurrence of cancer, being myeloma patients.
Take good care of yourselves, and I hope you have a nice holiday season too.
Thank you Tabitha. I can appreciate all of the sacrifices you have had to take and your insistence on staying for everything. I was fortunate to have had a year free of drugs and was able to travel with my wife. I cherished those times because I know there will be more difficult and restrictive times ahead or just purely logistical issues that limit our lifestyle. I would encourage you though to take some time for yourself, you have more than earned it, and the two of you will be the better off for it. Easier than it sounds, I know. My wife and I love to go for regular walks together through a local forest trail.
Dear Tabitha, I am glad this column was about you. You have told us a lot about what Daniel has been through but little about what you, the caregiver, has felt. Thank you for being honest regarding your resentment about multiple myeloma. It does rob us of the joy we expected in this life, and you and Daniel have been through more than many of us. I am glad you are there for Daniel advocating for his care and treatment. He needs you. I have seen individuals abandoned once they came down with cancer or a chronic disease because of the tremendous toll it takes on the caregiver. Like you, I have been there for my husband, and I too have felt resentment at times for the demands placed on our lives now. But somehow we get up each morning and try to live that day to our best ability. Like Daniel, my husband is on infusions of Empliciti (elotuzumab) along with Revlimid and dexamethasone for the foreseeable future. We also look forward to a future when the treatments are no longer necessary, but until then we are grateful and thankful for each and every day.
Thank you for your profound honesty and revealing of your deepest thoughts. The "bell" is always there. At times it is silently packed away in a far off place. Other days it is muffled, trying to catch my attention. I am a caregiver and retired RN. The keeper of reams of lab results, appointments, symptom controller, etc, etc. I attend all appointments, and am responsible for remembering every conversation. I am weary. Your thoughts have given me the strength to voice my feelings.
Dear friends, thank you all for your comments. I am overwhelmed by the outpouring of encouragement and your personal stories in such a short period of time! And to think, I almost didn't write about this topic because I am always hesitant to write about my personal perspectives and the difficulties myeloma brings. Once again, I am uplifted by the cacophony of voices that say, "you're not alone" in this fight. I really like what Nancy's nurse said about the bell bring there for all the small victories too. For many of us and our loved ones, the victory is getting another day of treatment done.
For my fellow caregivers who shared, you are an inspiration to me. Thank you for speaking so directly to my heart. I want to leave you with this bit of encouragement as well:
Showing kindness in the face of our weariness is one of the greatest gifts that we can give. It also a giving source of strength in return. There have been times when Daniel was in the hospital and I have been at the end of my reserves, but when I looked into his eyes, his tender, appreciative gaze carved out a moment where inexplicable love lived. Those moments remind us of the gifts that love bestows upon the beloved.
Wishing you much love and strength during this holiday season and the weeks ahead.
-Tabitha
Tabitha,
Thanks for such an honest, moving column. For what it is worth, I have been a patient going on 12 years and have been in some form of continuous treatment. Since my relapse, I am back to weekly shots of Velcade, monthly infusions of IVIG, and on top of those, quarterly infusions of Aredia. In addition, I orally take Revlimid on 21 days, off seven, and 20 mg of dex a week orally. However, I work full time with an understanding employer who allows me to work around my treatments.
I drive myself to the treatments and try and keep my wife out of it. Not that she is not supportive, she is, but I prefer to be as independent as possible. I don't even have her come to my oncologist appointments once a quarter. I will tell her what is going on and if there is any change in my numbers. We are all different, I guess I am holding off as much out of pride as anything. However, if I really need her, she is there for me. Knowing that is enough for me.
Tabitha,
Thank you so much for sharing. As always, you are very eloquent.
Recently I was diagnosed with depression. The reasons were quite clear to me: EJ's cancer, my mother's death, moving and selling a house, problems at work, etc. But I thought that staying "in the present" with each of these events would protect me from becoming depressed, so I just plowed on. The doctor explained that was not how depression worked. Taking so much on, never letting go, and not asking for help led to the depression even though I was trying to be so responsible and adult (which in it's own circular way was again part of the problem). Please take care of yourself and try to let go of some of your responsibilities.
I don't accompany EJ to his monthly visits to the oncologist. I go with him when emergencies arise and we need to go to the hospital, when his status is changing and we need to discuss treatment options, and when he can't drive home after a test. During his monthly visits, if something comes up, he can always reach me on my cell phone.
Lyn
Your words made me so sad. I imagine the two of you leading a normal life, with its ups and downs, but without the constant threat of survival, before this awful disease hit Daniel. How disruptive it is. I do hope that the doctors will find the way to give him remission and give you a remission from the constant stress of being his carer.
Tabitha,
I rarely comment on columns published at the Myeloma Beacon. Your column moved me.
I am the myeloma patient. My myeloma has now invaded my kidneys, so I now have dialysis treatments 3 times a week in addition to everything prescribed by my oncologist, including treatment infusions, blood and platelet tranfusions, along with constant blood draws. My caregiver is my husband who has never missed an appointment or dialysis / infusion treatment. He does not stay with me 24 hours even though I've been hospitalized 6 times since mid-June, once for pneumonia and for multiple other reasons, including the PACE treatment which was 4 solid days of infusion. We have 3 beautiful Yorkies that must be tended to along with other household chores that must be taken care of. I encourage my husband to take time away even though I'd love to have him with me at all times. I believe this helps him cope with all that's required of me to keep fighting this hateful disease.
With each bone marrow transplant I get, my prognosis gets worse. I know my oncologist is close to saying there's nothing more he can do for me. Yet, I won't be ready to give up and will look to others who just might say we have a clinical trial that could help you. I've already discussed this with my husband, who is 100 percent behind me. It will mean we'll have to move temporarily to another city, but we own an RV and that will make it easy to still care for our Yorkies and live in familiar quarters. I cannot survive without the love and support I get from my caregiver, my husband.
Thank you so much for sharing your thoughts and feelings with all of us.
Thank you for your comments, Ron, Lyn, Annamaria, and Laverne! You have all really given me something to think about.
Ron, I can see where I might prefer to go solo to my appointments if I were the patient as well. I'm pretty private about my personal health, and it would be difficult for me to be as open as Daniel has been with me. I'm so thankful that Daniel doesn't mind me coming along. The things I can imagine are probably worse than the reality, so it's good that I can see how he is doing at each appointment.
Lyn, it sounds like you have many painful things to juggle! I commend you for defining some limits and taking care of yourself. It's not easy to do, but it is vital to us being able to support our loved ones.
Annamarie, thank you so much for your empathy. I hope that you and your loved ones are doing well. This road is hard on all who walk it. I'm so thankful for the support that we can provide one another here at the Beacon. It works both ways, for sure! We're all in this together!
Laverne, your comment was such a reality check for me. Just when I feel badly about the toll that Daniel's weekly treatment and supportive infusions, labs, monthly Xgeva injections, twice daily Lovenox injections, oral medications, and specialist appointments take on our lives, I am reminded that there are those whose battles are so very much tougher. Bless you for all that you and your husband are going through. I applaud your strength and will to fight! You're so wise for planning to move to a new city if need be, so that you can find the clinical trials and care you need. Stem cell transplants aren't the only option these days, for sure, and they don't work for everyone. Perhaps one of the many new drug therapies being offered in clinical trial could be just what you need. I hope so! I'm keeping you in my thoughts and wishing you the best. We're rooting for you! Hang in there!
Thank you for writing this. I especially appreciate you being honest and not putting on a fake happy face and ending with something trite. Being a caregiver to my husband is the hardest thing I've ever done. As you said, it's exhausting. But also as you said, I can't seem to loosen my grip. It's helpful to know others are going through this, too, and somehow surviving.