Myeloma, Party Of Two: 13 Hours, 16 minutes, And 45 Seconds
It’s a Tuesday evening, and I have the house all to myself. I sit at my desk, with a generous pour of red wine, and Sara MacLachlan softly singing through the speakers. My hands are poised upon the keyboard, and I’m ready to type this month’s column.
Despite the inspiring ambience, my mind resists the usual flow of words. I want to write something inspiring and uplifting. But in my mind’s eye, I see numbers where the words should be. They are large, pulsating, digital white numbers in a dark mental void. They read 13:16:45. These are the exact hours, minutes, and seconds till my husband’s next appointment with his myeloma specialist.
This preoccupation of mine began about 72 hours ago, as it usually does. Small stress cracks begin to appear in my carefully constructed walls of worry-free positivity that I erect between appointments.
I think about how it’s been almost two and half years since his diagnosis of smoldering myeloma. Will this be the visit when he becomes symptomatic?
I try to hide these counter-productive thoughts with encouraging articles about myeloma research and bright reminders about the steadiness of his numbers. I prepare with an impressive flurry of caretaker’s efficiency, focusing on the details that must be attended to: the 24-hour urine jug, memorizing the appointment schedule, and planning the best departure times. We always go out for a celebratory dinner after his appointments, so I think about which restaurant we’ll choose this time.
But, the truth is that it’s all smoke and mirrors, a self-induced subterfuge that isn’t fooling anyone. These are coping mechanisms, distractions, little behavioral responses to help me cope with the worry about what could change in 13 hours, 16 minutes, and 45 seconds.
I spend the majority of the time between appointments with family, friends, and the normal things of life, but time flies and soon the appointment reminders yank me out of my happy denial. They begin with 7-day, then 3-day, then 1-day reminders of what is to come. Then it’s here: appointment day.
Don’t misunderstand me, I know how lucky we are to have such highly qualified specialists and I am thankful for their interventions, but it’s a bit of a double-edged sword for me. We need their myeloma expertise and their life-prolonging medicines to be sure, but I also know that they’re the messengers of bad news. With each visit, I just hope that we won’t receive any. Appointment day is complicated.
On appointment day, everyone seems to be in complete control, except for me. I wonder if anyone can hear my heart beating out of my chest. Can they imagine how anxious my stomach is, or how nauseated I am as I wait for the pathology reports? Does the staff understand the anxiety that has built up over the last couple of days, or how hard it is to not cry out with relief when we get the good news that all is well for another two months?
My husband, the patient, sits there so solidly. He discusses his condition like it’s an engineer’s schematic, completely in control. I can barely speak without my voice wavering. I’m just working overtime trying to maintain a supportive, calm caretaker’s visage. I don’t want to show my anxiety or my fear. I want to be strong for my husband, just like he is for me.
What I wouldn’t pay for a caretaker’s guide to “rationalism and seemingly unaffected behavior!” The last thing that we need is for the staff to think that I’m as crazy as a loon, and yet in the span of a few hours on appointment day, I think I must run through almost every feeling on the range of human emotions.
And then, we get the good news, he still smolders. We are thankful and try to act like everything is normal. No release. Just swallow back all that suppressed emotion, and get on with it. What’s there to release anyway? Not tears! We got another hall pass. We’re so fortunate! How many other smoldering patients and their families didn’t get the same news that we received today? We’re good for another two months.
Yes, appointment day is definitely complicated.
All this is normal, I expect, but it doesn’t ease the tensions that crop up every two months. The reality is, more than likely one day we are going to go to my husband’s appointment, and we will learn that he isn’t smoldering anymore. Will it be the end of the world? No, it most certainly will not.
Like many others fighting this disease, he will join the ranks of those who harvest their stem cells, receive stem cell transplants, and begin side-effect laden combinations of drug therapies. We will optimistically fight disease progression every step of the way, just as we do now. But it will bring a new era for us, one of increased uncertainty and complication — and despite rational assurances that all people face uncertainty in life, it would seemingly invite the unknown in a significant way, which scares me.
We try to live our lives like we’re not waiting for the other shoe to drop, and I think we’re pretty successful at it. But the closer we get to appointment day, the harder it gets to live with multiple myeloma.
Everything could change in less than 13 hours, 16 minutes, and 45 seconds. Wish us luck.
Post appointment report: My husband’s disease remains stable. He continues to smolder. Thankfully, all is well, and now the cycle begins again. We have two more months before the next appointment.
Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diagnosed with smoldering myeloma in 2012 after initially being told he had MGUS. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Hi Tabitha - Thank you for your column. I'm a caretaker too, with a husband in Stage 3. Caretaking is harder because the patient has a plan to follow and he just has to do his thing. Us ... well, there is no manual except the one you make up as you go along, as each case is different. There will be trial and error. Especially error.
I would suggest not trying to keep your chin up so much. Let your husband and his oncologist know your fears. Express your frustration with the uncertainty. Not being positive about a terrible thing is not a sin, nor will it advance the cancer.
Be well, K.
Hi tabitha
I must say I really enjoyed your column. I was diagnosed as smouldering in January 2014. My appointments are also every 2 months. I still feel like I don't understand myeloma in any sense and appointment days are hard. People say I'm lucky, as I'm at watch and wait, but to some extent I just wish I could begin the treatments and feel like I'm fighting. Not sure if this makes sense?
Hi Tabitha - Thank you for such a fantastic column. It has really opened my eyes, and then to stop and pause, and try to see through the eyes of my husband, my true love, my caregiver.
I was diagnosed 2 years ago with active myeloma, transfusion dependent, at age 45. I remember hearing the diagnosis for the first time -multiple myeloma. I listened for a moment, heard the words incurable, stem cell transplant, etc., and off I went, running into the streets of Boston. Had never been there before.
It was my husband who found me, cried with me and then picked me up, saying all things are possible, believe in yourself, believe in those around you. Believe! Have hope! And you, "we", will get through this battle. He has given me strength I did not even know existed in my self.
I would like to thank all the caregivers out there. The support you give, the holding of the hand, the sitting at appointments, your smile, your tears, the small slither of cheese cake on a tough day. Somehow, all of it makes it all a little easier. Thank you! You are truly angels here on earth!
-Jen
I have always known that my wife has loved me. When I was diagnosed with mm in 2012, I learned that, no matter what, she will always be with me. The caregivers of mmers are the most special of the special.
God bless each and everyone of you.
marvin
Tabitha,
Thanks for sharing your fears and concerns regarding the monitoring process of your husband's MM. My husband was diagnosed in 2012 with Stage III MM and it has been a roller coaster ride ever since. Even though he is doing well with the MM as well as the treatment, every new symptom sends me into a tailspin. So I fully understand what you are experiencing.
Keep on finding those quiet moments and the little pleasures of life. It is said 90 percent of the things we worry about never come true. Since, MM is such a wily disease, and even the specialists often don't know the twists and turns it will take, I just tell myself: "Don't worry about the things you cannot control, just be strong for when they come along."
All the best to you and your husband!
Hi Tabitha, thanks for another insightful, heartfelt column.
I went from MGUS in 2009 to smoldering in 2010 to symptomatic in 2013. Having gone through those stages, I can sympathize with the fear you (and your husband, even if he doesn't talk about it) feel every 2 months. I had many of the same emotions that you describe before my appointments when I was in the smoldering phase.
But now that I am on the other side, so to speak, I want to tell you that it's not so bad. Developing a plan with my medical team, executing the plan, and seeing positive results has made the symptomatic stage much easier for me psychologically than when I was in the smoldering stage. I know that sounds counterintuitive, but it is true. If I had known what I know now when I was smoldering, I would not have worried so much then.
There's still a small fear in the back of my mind about how long my remission will last, but I don't go to every appointment with the dread I used to feel when I was in the smoldering stage. I am confident that my medical team and I will develop and execute a new plan when we need to.
I second what the other commenters have said about caregivers. That's a tough role to be in. Those of us who have strong, caring caregivers supporting us are very fortunate.
Finally, thanks for relaying the good news at the end of your column that your husband is still smoldering. I hope that continues! But try not to worry so much before each appointment. (I know - easy to say, but hard to do.)
Mike
"We try to live our lives like we’re not waiting for the other shoe to drop, and I think we’re pretty successful at it. But the closer we get to appointment day, the harder it gets to live with multiple myeloma."
I can relate to this SO VERY MUCH!!!
Tabitha,
I too have a wonderful caregiver in my husband of 35+ years. And every new "issue" is hard not only on me, but on him as well. I went to my monthly appointments to my regular oncologist by myself for almost a full year, post SCT. Then the one time he goes with me, my numbers were bad! Then 2 weeks of BMB and blood tests all confirmed it was a glitch in the test. No relapse, no problems. So now, he does not leave my side when I have an appointment that involves MM.
Caregivers are a rare and special breed. To me and to any cancer patient, they are saints and without them we could not focus on the plan to survive this disease. And like you, I face each appointment with a bit of uncertainty. I mentioned this to my oncologist and he told me not to dwell on the appointment, but to dwell on the positive and to enjoy being "normal" for now.
Be strong and remember, we may not always say it, but we LOVE our care givers!
Mary
Thank you all for your wonderful comments. Your insights build me up and help me feel so supported on this journey!
Kelly and Yvonne, it's so great to hear from fellow caretakers out there. You're right to point out the importance on honesty and not putting "too brave" of a face on as we deal with the ups and downs of MM. Negotiating the ups and downs of this disease with both honesty AND grace is a tall order. I endeavor to be the best wife and caretaker I can be every day, and I am so thankful that it is enough for my husband. I am so blessed to have him. Yvonne, I especially like what you said: “Don’t worry about the things you cannot control, just be strong for when they come along.” That may be my new mantra.
Wendy, Jbodnar, Marvin, Mike, and Jody, I am so thankful for your perspectives as well. I learn so much from your experiences and insights that help me be a better caretaker. Mike, your advice is especially helpful. So many folks we meet learned about their MM once they were already symptomatic. To learn about it from MGUS and then to smolder for awhile, fully comprehending the ramifications of disease progression and treatment presents some interesting challenges. THANK YOU for assuring me that progression to active myeloma is not as bad as we fear. I hope that we too will feel better once we get there. Admittedly, one of the hardest things about this is the waiting game. The bright side of active myeloma is having a bonafide treatment plan to enact, so that we can bring in the healing.
Best of health and well wishes to you all. Keep strong friends!
Mary Dee, congratulations on 35+ years of wonderful marriage! It sounds like you and your husband make a wonderful team. I'm so sorry to hear that the testing glitches brought such stress in your lives! Goodness knows that MM brings enough stress to us all. We certainly don't need to be adding more! I'm glad to hear that all is well now though, and that you were facing it together each step of the way.
The patient and the caretaker are a symbiotic pair, each loving and supporting the other...two parts of one whole. I would bet that he's as appreciative of you as you are of him!
Best wishes for continued good health (and matrimonial bliss)!
I would like to thank all the caregivers for all that they do. I can't imagine what this terrible cancer would be like without the many caregivers I, thankfully, have in my life.
A well-written essay and well-written responses as well!
Best,
Steve
Thank you Tabitha for your column. I am all too familiar with the plastered on, fake smile the days leading up to my husband’s follow up appointments. I thought I was the only one that went through this … silly me!
My husband starts getting an irritability about him about 2 or 3 days before the appointment. Being the cheerleader I once was, I cheer him on and tell him I just feel we are going to get good news this visit. I have this fake cheerfulness about me in hopes it would rub off on my husband. Appointment day is finally here and you better not speak to my husband or he will bite your head off and I run to the bathroom 50 times (stopping 10 times on the 2 hour drive there). The trend has been that the car rides home are very quiet … we have not gone to one appointment yet that we’ve gotten great news, or the news he wants to hear.
The 24 hour urine container and the 10 tubes of blood he has to give next week has not let us forget that his next upcoming appointment is very close (Sept. 18). But I’m already cheering on my husband, telling him ‘I just feel it that this is the appointment that you are going to get GREAT news’, not revealing the pit deep down in my stomach. He just smirked at me and told me to go ahead and keep on thinking that … and I will! I just know this WILL be the appointment that we get great news!
Best wishes to you and your husband.
Hello from the UK, Tabitha,
My husband was diagnosed with smouldering myeloma summer 2013 (having lost an older brother to the disease about 14 years ago). I empathise with your developing anguish and fear every two months, but now I would give anything to find the portal back to that time, as he's just been diagnosed with stage 4 non-Hodgkin lymphoma, as well! So two bummer summers! We all just have to go on living and loving one day at a time. Very best wishes to you both.
Yva
Tabitha, thank you so much for your column. The demands of diagnosed MM are so pressing that I sometimes feel sheepish about being worried when having only smoldering myeloma - funny way to put it, I guess.
I was locally diagnosed with MGUS almost 4 1/2 years ago - and felt extremely relieved. Had an appointment with a MM specialist at the recommendation of my local hem/onc and then was told I had smoldering myeloma (SMM). And the discussion has gone from SMM to high-risk SMM to maybe-high-risk MM (depending on the metrics you want to view) to moderate-risk to just-relax SMM, depending on the specialist. It isn't a plot - just that the state of disease knowledge and treatment considerations seems to be changing rapidly, if I can put it that way.
I don't talk about it much, even with family. So many more issues of the moment to address, my worries don't get much play. But as appointments approach (September / October for blood, then the appointment looming), every 3 months the countdown clock begins to tick and I begin to search for ways to amuse myself on my trip to the appointment - books on tape, museums, catching up on reading on the train, Tai Chi, walking - all of it important, but in the end, it is stressful. Stress to be managed and acknowledged, but not embraced. Kicked down the road, hopefully.
I appreciate your column and thoughts - your husband is very fortunate to have you actively involved in his health. Best wishes to you both and to all the Beacon caregivers and cared-abouts.
Tabitha, that is a beautiful article, and you so eloquently express how wonderful it is to have a caregiver too! My husband has always been there for me throughout the whole MM journey, and that is a great comfort to me! He also can help me to sort out and interpret any medical news. Really best wishes to you and Daniel and hope that he continues to be 'just' SMM, although even that sounds like a lot to me now!
Nice to know that you are a Sara MacLachlan fan, for she is a Canadian singer songwriter. One of my favourite songs of hers is 'Angel'. My daughters and I saw Sara perform with 'Lilith Fair' in about 2000, in Edmonton. She had organized it. Lilith Fair was a touring event featuring female singer songwriters (Sheryl Crow was there too). I love her version of Gordon Lightfoot's 'Song for a Winter Night' and sang it at a recital!
Hi,
My dad has been suffering from myeloma since 2010, and I mean suffering in the true sense of the word. Dexamethasone, peripheral neuropathy, a stem cell transplant, maintenance therapy and the numerous blood tests, transfusions, 2 broken femurs now with titanium rods in them, etc, have not made his life any easier. He is 71 years old and in spite of everything he has undergone, he manages to keep calm.
We have also gone through the whole range of emotions you have so wonderfully described. This emotional roller coaster is no way for people to go through their lives. It is just not fair that we have to live from one blood test to another.
There is something seriously wrong when we cant't find a method to selectively kill off these pesky cancer cells but can put a man on the moon, accurately map oil deposits at the bottom of the ocean (from outer space nonetheless!), travel faster than sound, etc. I just can't believe that the current "treatment" regimen of cutting, burning, and chemically poisoning our bodies is the best solution we have.
In what other walk of life would this solution be acceptable?
I am not a conspiracy theorist, especially in the medical field, as I don't think our medical researchers / doctors / pharmaceutical executives are so barbaric that they would hide a cure for profit. But I can't bring myself to believe that better drugs / cures do not exist and have not been discovered to cure this problem.
P.S: My dad has just been diagnosed to be double refractory to Velcade and lenalidomide [Revlimid]. But the fighter that he is, I am sure he is going to win this battle as well.
Vijay Poduval
I also am a caregiver of my husband. I also control the calendar and attend every appointment. An oncologist friend always says, it takes two sets of ears to hear the doc after cancer has been diagnosed.
We keep a rigid daily routine, including physical and spiritual events. We keep a positive outlook, knowing that new drugs are coming out every year, since he was diagnosed 3 yrs ago! We pray for cure and are thankful for our brilliant doc.
You can know, we can conquer this cancer!
Keep writing!
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