Myeloma, Party Of Two: Sign Language Anyone?
My husband Daniel, who was diagnosed with smoldering myeloma in 2012, has always had hearing problems. He has small Eustachian tubes that don’t adequately drain fluid, his doctors say. His struggling Eustachian tubes usually bring at least one ear infection per year, and often lead to double ear infections whenever his allergies get bad, which in the subtropical climate of Houston means a lot of the year.
Lately, Daniel has had a terrible time hearing anything. Over the years, there have been times when I wondered if he just had "selective hearing." Mainly this was due to him not hearing me during Houston Rockets or Texas A&M games. But, bless his heart, as it turns out, Daniel really is "deaf as a post" right now, regardless of what semifinal is on TV.
After seeing his ear, nose, and throat (ENT) specialist, Daniel was confirmed to have a double middle ear infection – and a good excuse for not hearing me for much of the last two weeks. As a result, the ENT specialist punctured and drained the fluid out of one infected ear. The other ear was terribly swollen, so Daniel was given antibiotics and a healthy dose of the steroid methylprednisolone.
Since then, it’s been pretty challenging. Daniel felt awful, his ears hurt, and he couldn’t hear anything. In my wifely fashion, I pestered him daily about taking his medicine, and he “selectively heard” me as needed until he finished his 21-dose supply.
Admittedly, there have been some pretty grumpy times at the Burns household, where my “cheery, chatty, let’s-get-on-with-it-nursemaid” approach was not in alignment with his “leave me alone to contemplate my soundless misery” approach. Truth be told, I would’ve been annoyed with me too, but what can you do? Life beckons, work calls, and friends attempt conversation! I’ve always been a pretty good interpreter for my usually stoic husband, but this month, it pushed even my limits.
Today, we geared up for his recurring two-month myeloma specialist appointment. We’ve been holding our breath a lot since last fall, since his rising free light chain ratio indicates that his disease is progressing toward the day when treatment will be necessary. We live our lives in two-month ‘states of readiness.’ Is this the month to mobilize for treatment, or will we get another two-month amnesty?
Well, today was definitely a good day!
We were shocked to learn that his kappa/lambda free light chain ratio had taken a significant turn for the better; it had decreased substantially! As we read Daniel’s labs together, there were improvements across the board (his hemoglobin, neutrophils, lymphocytes, urine protein, etc). It was incredible!
Briefly I fantasized about the possibilities. What could it be? We had just eaten fajitas for dinner the night before; could Tex-Mex cuisine be retarding his myeloma? Was his specialist really just about to give us carte blanche to eat all the fajitas we want – for our health? I thought to myself, I’ll fill our house with chips and queso, if this doctor will just say the word!
Before my mind could wander to guilt-free enchiladas smothered in cheese, Daniel’s specialist asked, “When did you finish the cycle of methylprednisolone?” “A couple of days ago,” Daniel said.
And there it was. Sure enough, we could thank our friend “Methyl” for Daniel’s stellar report. No stacks of chips and salsa for us, no chipotle-smoked fajitas laced with undeniable excuses of “It’s for his health” attached to every savory bite. It seemed that we can thank methylprednisolone for another two-month reprieve, and not our favorite Tex-Mex fare.
Don’t get me wrong, we’ll take it every day of the week. In fact, Daniel and I had the same thought as we left the hospital: “Given treatment for ear infections or myeloma, I’ll just keep taking the methylprednisolone, thank you.”
Daniel’s myeloma specialist was laughing with us, saying that Daniel needed all his five senses, and therefore we shouldn’t trade his sense of hearing just yet. But to be honest, I bet Daniel would gladly trade his hearing for complete, total, and everlasting remission of this disease.
The truth is we do know that Daniel is smoldering, and we do know about what the world of myeloma can bring. And given myeloma or ear maladies, I would learn sign language and put up with a lifetime of “selective hearing” to keep him from progressing. I’ll give up help with the laundry, honey-do lists, and all my banal chatter if I could just get my husband back to normal.
How bizarre to be at a place in life where you’d trade your hearing for a cure to myeloma! Obviously, hearing is a sense that none of us want to live without, but I agree with my husband that it seems like a small price to pay for the gift of life, especially when you’re 41 years old and potentially facing symptomatic myeloma.
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 .
Dear Tabitha,
Thanks so much for the update on Daniel's health, and the surprise turn of events at the oncologist's appointment. Sorry he has had the deafness, and hope it can be treated well too. Both of my elderly parents wear hearing aids now, each of them being 88 years old. In my father's case, he has been deaf in one ear ever since being to close to some artillery firing while in basic training for WW2, back in 1943 I think. Over the years, that progressively got worse. Lately, he received a hearing aid that actually has a small microphone in the deaf ear, and transmits it electronically to the other hearing aid in the not so deaf ear. This has helped a lot, although he cannot tell from where the sounds are coming from.
But isn't it great that the steroid helped push down the sFLC ratio. As an actively treated patient, I have had the same experience too, and that's why I don't mind taking dex. When I went back on treatments last fall, after the first month, the myeloma counts had fallen considerably, and my doctor commented: that's the dex, and the Revlimid hasn't shown its effect yet!
Hi Tabitha,
Given that the steroid your husband took is sometimes used to treat cancer, and that it is in the same family as dex, which is commonly used to treat myeloma, I am wondering why the doctors don't consider treating Daniel now. It is my understanding that smoldering myeloma has been now approved for treatment, rather than waiting for a CRAB symptom to appear. Just curious!
Ginny
I've read your articles before, outlining your anxiety over your husband's smoldering disease and your dread of full on myeloma. I'd love to read that you've addressed your anxiety, perhaps through a perspective changing practice such as mindfulness. As a patient who had no luxury to smolder, but had to deal with active myeloma, I've found coping resources to ease the angst, which you seem to have in abundance.
Tabitha, thank you for another great article. I hope that Dan's hearing is beginning to improve. It has to be difficult for him at work as well as at home. Give him our love. You're both in our thoughts daily. xo xo
3 years ago our daughter called from the emergency room saying she was being admitted. I had a feeling something really bad we was going on. On the 2 hour drive I prayed that if something was wrong let it be that she was diabetic like I am since I was 14. I have dealt with this disease for 46 years. It's something I know can be handled . When she was told she had MM I had never heard of it. I still wish she was diabetic instead
Thank you all for your comments! Nancy, I'm so glad that the Dex is having a positive effect on your myeloma. That's such great news! Ginny, thanks for the question.Daniel is being monitored closely by his specialist to see if his FLCs are indicating a pattern of disease progression. Thankfully, he doesn't have any CRAB symptoms. As you know, it's a critical decision on when to start treatment, and it's a careful balancing act given his young age and the potentiality for developing a refractory response to the myeloma drugs in time. Thanks for the question!
ELS, thank you for your comment. If you haven't had a chance yet, I invite you to read my column titled, "The Time To Be Happy Is Now." In it I discuss some of the things that you commented on, including two messages that I mindfully reflect on everyday. In another column I also described how music, acupuncture, massage and other alternative therapies can be helpful to patients and caregivers.
Daniel and I live very full, rewarding lives, and I think that we "live well" with his condition. We have a very supportive family, church and friends, for which I am very thankful.
In my columns I am tasked with talking about issues that I experience from the perspective of a spouse and caregiver, which is very different from that of a patient. I hope that my columns help other caregivers, families and patients feel that they are not alone on their myeloma journey, and that we share some common experiences. Your perspective helps me to consider my messaging in new ways, and so I thank you.
Sandra, you are so right! Daniel has had a challenging month. I'm just so glad that a few weeks have passed and he's doing great now! He feels better, he's hearing better, and he was even able to enjoy watching the Rockets in the playoffs (for a little while, at least before the lost it to the Golden State Warriors)! Thanks as always for keeping us in your thoughts!
TJ13, I'm so sorry to hear about your daughter's diagnosis. Thanks so much for your comment. I can relate to your feelings. Your daughter is lucky to have you in her life, and I am sure that your love supports her daily.
Your column is beautifully written ... as usual!
I have been off medicines for two years now, but as my IgG and light chains values are rising, I fear relapse. I asked my hematologist if I could take Revlimid without dex when the moment to start the cures comes, or if I could at least skip cortisone for the summer period, in order to take the sun without the risk of permanent spots on the skin as a consequence.
She said "You see, cortisone is part of the cure in myeloma. While in other cases, such as breast cancer, it is a support, in myeloma it is as important as chemotherapy."
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