Myeloma, Party Of Two: Switching Roles
My husband, Daniel, likes a movie called “All of Me” starring Lily Tomlin and Steve Martin. The film uses a “body-switching” plot device whereby the characters are suddenly thrust into unfamiliar roles, and the audience laughs as they watch them adjust to another person’s life.
Lately, we’ve been starring in our own role reversals.
For once, things seemed to be going well with Dan’s treatment; his maintenance therapy consisting of Empliciti (elotuzumab), Revlimid (lenalidomide), and dexamethasone (Decadron) appears to be having a positive impact. Last month we learned that his M-spike has gone down from 1.8 to 1.4 g/dL (18 to 14 g/l). This was the first bit of good news we’d received in nine months. We weren’t to remission levels yet, but we were just thrilled that the lever was moving in the right direction!
Just as I began to bring out the bunting, our good fortune was interrupted and I found myself in unfamiliar territory. One afternoon I started having terrible pain in the center of my chest and upper stomach area. I had cramping on my side as well. It was almost unbearable, and it lasted for a couple of very difficult, long hours. I was afraid that I was having a heart attack. I thought to myself, “Please let this go away! I can’t be dealing with this right now. I simply have too much on my plate!”
Despite my reluctance, I went to the doctor and had all the tests run. Thank goodness, it wasn’t heart related. As it turned out, I had a gallstone attack and I would need my gallbladder removed because there were more stones visible in the MRI. While removing a gallbladder is a common, straightforward procedure, my internist explained, if left unattended a gallstone could get stuck in my inner ductwork and become fatal.
The surgeon, Dan, and just about everyone else were pushing me to schedule this surgery. I, however, was reluctant to do so because Dan had long treatment sessions every week. Who would take him to the hospital and wait with him during his treatment? Who would ensure that his needs were being met and watch to make sure the treatment went as it should go? Additionally, I was balancing multiple projects with my work and I had several major deliverables scheduled throughout this month. I didn’t know how I would make my deadlines, take care of Dan, and be off my feet for a week following surgery! I had become a difficult, procrastinating patient, and Dan was now my caregiver.
Dan was performing his new role well. He went to the emergency room with me and to my internist appointments thereafter. He pensively watched as they ran tests and took labs, ruling out everything from liver cancer to blood clots. Now he held my hand and tried to make me feel better as we waited.
I let a week go by, and I had another gallstone attack. This one was worse than the first, and while I had this sinking feeling that I would have to have the surgery, I still hadn’t made the appointment with the surgeon that my internist referred me to. Dan gently reminded me of all the people we knew sans gall bladder, who had routine surgeries without any issues. He assured me that there was no need to worry about him and that he could take care of himself.
I could see that Dan was worried about me, but he knew that he could only influence my decision and not make it for me. I recognized this familiar caregiver’s frustration.
The thing is, I may be an excellent caregiver, but I am a terrible patient. I can’t stand giving up control. I didn’t like the idea of putting myself in someone else’s hands. I’m a modest person. Would they be operating on me in an “exposed” state? What if they didn’t anesthetize me correctly? What if I woke up during the surgery and couldn’t speak to let them know that I could feel the cutting? I tried to be an adult about this and put on a stiff upper lip, but I was a wreck on the inside.
Inevitably, I had the surgery. The surgery went as expected and without problems. The anesthesiologist took pity on me and made sure that I was out before I even entered the operating room. I was left with five 1.5-inch incisions throughout my abdomen that would heal in two weeks. The first week I would be very sore, the surgeon explained. She was right. I had no idea how many stomach muscles I used until I was recovering from this surgery. Simple tasks like reaching for something, sitting upright, or laying on my side was an excruciating enterprise, with my abdomen and side feeling like a giant bruise. I needed a caregiver.
It was Dan’s turn to play caregiver. He stayed with me during the surgery and in the outpatient recovery room. He then took me home afterwards and worked from home for two days to make sure that he was nearby if I needed his help to get around the house. I couldn’t drive for a week, or lift anything over ten pounds, so he was in charge of feeding our cats and cleaning their litter. He went to the store and made sure that we had food to eat.
I’m in my second week since the surgery, and our worlds are almost back to “normal.” We’ve switched our hats back, and I’m back to doing all the things I normally do, albeit more slowly.
He’s the patient and I’m the caregiver again. Multiple myeloma is back on the forefront.
Dan caught food poisoning from something he ate at work this week, so I checked on him, cleaned up the messes, and gave him Compazine (prochlorperazine) for his nausea. We’ll also meet with his myeloma specialist, and he’ll have all his monthly myeloma tests and a treatment infusion on the same day, so it is likely to be a nine-hour day at the cancer center.
The movie of our lives still plays on, and we’re back to our familiar roles. After our temporary switch, I’m reminded that neither one of us has the corner on the caregiver or patient markets. The uncertainties of life are not exclusive to myeloma. I hope that I won’t be the patient again anytime soon, but I am thankful that Dan makes such a good caregiver if I do.
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 .
I am so glad to hear Daniel's numbers are moving in the right direction! And just in time. So glad he was able to take care of you! Glad you are on the mend and able to get back to caregiving. I don't like being the patient, either. I realized how much of a control freak I am when I found out I had multiple myeloma. Lessons are definitely learned, so I guess it's good coming out of the bad when we do learn stuff.
Take care both of you! I also enjoyed "All of Me."
Hello Tabitha, so happy to hear that you are on the mend after your surgery. It's sometimes good to switch caregiving rolls. You have been such a good caregiver to Daniel, so it was good that he was well enough to care for you. After 7 years of remission, my M-protein has started to peak. I am alarmed about this, so I am in the watchful waiting period. I am very pleased to hear that Daniel's numbers are going down; he has had a very rough time and deserves to have good news. Rest, and take care both of you, Diana
That's a switch. I have another one to share. My husband has been my caregiver since I was diagnosed in 2005. All the way through the stem cell transplant, relapse, remission, on and on, he has always come to my appointments. Every single one. Well, in November he wasn't feeling well. Went to get blood work and it was terrible. His hemoglobin was 5.9 and all the rest just as bad. In early December, he was diagnosed with high-risk myelodysplastic syndromes (MDS). So now I take him to all his appointments (which are numerous), and he will need a donor stem cell transplant. All I can say is really? This happening now? After everything we've been through? But we move forward each day and shake our heads and wonder at the irony of it all.
Tabitha - Extremely happy to hear that Daniel is responding to his treatment regimen and that his M-spike is retreating. We have been very concerned about your situation. It is also great to know that you came through okay on your gall bladder surgery. No matter how common, you never know how any one individual will react to surgery. My husband and I recently had a role reversal too, but not nearly as serious as yours. I hyperextended my left knee and was incapacitated for almost 4 days. After asking my husband to get me a second cup of tea one morning, wherein he rolled his eyes, I knew it was time to get back on my feet! Like you, we are back in our “normal” roles.
Tabitha, I am sorry to hear that you had to go through painful gallbladder attacks plus surgery, but hopefully that will take care of the gallbladder problems. And it is good to know that Daniel's monoclonal proteins are heading in the right direction, i.e., being lessened! I hope that this continues and that you have a nice spring. It was a shock to me when I first became a myeloma patient to see my family looking after me, when I had considered myself a family caregiver all along.
And one funny incident happened when my husband had minor surgery many years ago and had taken midazolam for local anaesthesia. He wanted to drive us home, and the nurses literally had to place him a wheelchair and let me push him to the car. Of course I drove, but then he wanted me to stop at a store and buy potato chips. Ha ha. Of course I did not stop, but one of our daughters brought the potato chips over to him later. It was the anaesthesia talking.
Hi Tabitha!
So glad to hear that you navigated the patient role successfully. I can relate that being the patient can be especially challenging when your role is generally as a caregiver.
So glad to hear that Daniel's numbers are trending in the right direction and appear to be stable. I think of you guys often.
All my best,
Jamie.
Great article, once again, Tab. Glad that the surgery is behind you and things are getting back to "normal." We're also so happy that Dan's myeloma numbers appear to be going in the right direction. So much for which to be thankful!!
Susan, Diana, and Jamie, thank you so much for your kind comments! It's so nice to know that so many readers are following Dan's journey and rooting for his M-spike to go in the right direction. Thank you as well for your kind thoughts for my recovery. It's most appreciated!
Christina, I am so sorry to read that your husband was diagnosed with high-risk MDS. I can't imagine how tough things must be for the two of you. One difficult diagnosis is enough, but two just seems inconceivable. I pray that you are supported by an unending fountain of strength and hope.
Patty, your tea story made me laugh! I'm so sorry that you had a knee problem, but I'm especially glad that you're no longer thirsty! Continued well wishes!
Nancy, your anesthesia story made me laugh, too! I wonder if you've heard the catch-phrase, "What happens in Vegas, stays in Vegas?" Well, as caregivers, I can honestly say that what happens in the hospital room stays in the hospital room! Thank goodness for those funny times "under the influence," though. They help make up for some of those not-so-good days!
Sandra, all is well and we're looking forward to even better numbers for Dan in the weeks to come!
All, thank you again for your kind thoughts and encouragement. Wishing you all good health!
Dear Tabitha, I was very sorry to hear of your recent illness but pleased to hear of some good progress for Daniel. You must both wonder what life is going to throw at you next. Graham and I can share your 'roll reversals,' as we too have had to cope with that recently. Graham is patient in both rolls, though more so in the caring one. I have little patience in either! Good wishes to you both.
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