Letters From Cancerland: Sandwiches
Many evenings as of late find me huddled on the couch, joints aching, a low-grade fever toasting my body, and an inability to do anything but contemplate an early bedtime.
I’m fine, really I am. I just saw my oncologist in early October, and his parting words were “See you in eight weeks.” My lab numbers are steady; I am on no medications.
So what’s up with my new nighttime routine? I do not have definitive answer, but I have a pretty good intuited guess. Call it fallout from being a member of the sandwich generation.
The term “sandwich generation” was coined in the early 1980s and really caught on in the 1990s. The phrase describes adults, usually in their 50s or 60s (and overwhelmingly female), who are caught between taking care of their aging parents at one end of the spectrum and their children (teens or young adults) at the other. The resulting stress comes from being sandwiched in between the older and younger generation, and tending to each, leaving little or no time or opportunity to take care of one’s own needs.
I am a member of the sandwich generation. But while my sandwich top is indeed the older generation (especially an elderly and increasingly frail aunt who lives one block away), the bottom is not my children. No, my children are doing well as they move into adulthood and parenthood.
The bottom of the sandwich is my multiple myeloma.
Let me tell you, I’d take the traditional bottom of the younger generation any day. Myeloma can out-tantrum the most terrible two-year old, out-pout the sulkiest preteen, and outlast the sullenest teenager. Car wrecks, tuition payments, and helping young adults survive the recession while they scramble for jobs are nothing compared to multiple myeloma.
Oh yeah, I’m sandwiched but good.
As the physical needs of the older generation (which also includes two aging parents living nearby as well) grow, I find those needs draining my reserves of energy. It’s not as if I have huge stores of energy to begin with; the myeloma took care of that nine years ago. When my reserves are drained and I am running on vapors is about the time the myeloma rouses itself and demands attention.
“Hey, April! Hey! Yeah, I’m talking to you. You know what I’m going to do since you drained yourself when you took your aunt shopping this morning? That’s right. I’m going to make it five times harder for you to get your energy back. How do you like them apples?”
Okay, I admit it. My myeloma has the persona of a street thug in a 1940s B movie. For good reason—my myeloma has that same thuggish narcissist worldview that it, and it alone, is worthy of my time and attention. Elderly aunt? Piffle. Cleaning the house? Small change. (Which would explain the desiccated moth on a living room windowsill.) Taking an afternoon to write a letter or mail a package? Come on, get real.
When I saw my oncologist earlier this month and he heard what I was doing on the elder front (and being well aware of my husband’s brutal work schedule), he turned to us both and said, “You two really need to take a vacation.” My husband Warren and I both said in unison, “We just took one!” My oncologist groaned softly and muttered that maybe we needed to take another one soon.
Later that same evening, I rehashed the discussion over supper. It reminded me of my oncologist’s response when I retired my law license after my tandem stem cell transplants. He said, “I would probably not have said to you that you had to retire, but I am very glad you did before it came to that.” His vacation comment resonated the same way with me. He will not demand we take a vacation yet, but at some point it may come to that.
For now, though, I am part of the sandwich generation. Pastrami on rye, ham on sourdough, vanilla ice cream on chocolate wafers: it’s all the same. I’m in the middle and the top and bottom are pressing in.
I’m not sure there are any quick fixes to this one. The needs of the older generation are real and immediate, every bit as much as the demands of my myeloma. For now, I will monitor the fevers; my personal physician is keeping an eye on me. And some of the rest can wait.
But at least I can go remove the dead moth from the windowsill.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
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Dear April, Thanks for your very poignant column. While of course the 'elders' in your family deserve respect and support, I hope that you are also taking the time to look after yourself. From all that I can garner, we myeloma patients are also a bit fragile with our health. We should take time to rest, exercise and recreate too! Is it possible that your aunt might like to be in a nursing home or retirement residence? That would shift a lot of the burden away from you. Of course I do not know your individual circumstances about this, but some seniors do thrive in a group setting! Take good care of yourself, and hope that those 'fevers' subside too.
It's rough....I know. I was thrust into the eldercare world big time this past May. Between trying to give what little energy I have to my wife and children and then attend to my parent's needs as well it gets to be a bit overwhelming at times. Add to the mix an ongoing sense of guilt for not be able to provide all the time and energy I'd like to give to my family when I take the necessary time for myself and then it gets to be more than 'just a bit' overwhelming....more like somwhat depressing, actually. Many days it's just one foot in front of the other...hoping things will get better...some how...some way. And so it goes.
April, loved it as always
Big sandwich here... Between a full time job and 2 small children.
Feeling tired, joints aching and when the end of the week comes, I feel feverish.
But everything is good with my labs since my stem cell transplant (18 months and counting!) so I keep going.
It was really nice to know that this tiredness and aching is kind of "normal" for myeloma patients.
Thank's April.
April, Thanks so much for sharing, and for addressing such a pertinent topic!!
Your insights resonate deeply. I'm also battling Multiple Myeloma as a member of the sandwich generation -- only I'm in the "caregiver corner," so I'm a bit removed from the daily physical battle of all of our MM front-line warriors. However my "position of proximity" places me at a point of highest admiration for each of you!!
My husband was diagnosed with MM in early 2011. My mother was widowed just five months ago, after my father (suffering from early dementia)somehow acquired some car keys and got into an ultimately-fatal accident (after 10 days in a trauma ward/ICU). We currently have a son in college, with another in high school. The physical & mental toll of all this is immeasurable. The financial toll has been devastating.
I'm thrilled to report, however, that my husband is currently doing great-- by MM standards. He's in remission following a ASCT two years ago, and has even been able to return to work. But that doesn't account for the daily aches, pains, fatigue -- not to mention the mental battle -- he fights daily.
I totally identify with your descriptions of the difficulty of seemingly "simple" tasks. The smallest hills become challenging mountains -- and I'm not even the one with MM! We've learned (and are still learning) to appreciate each day, and to celebrate the smallest of victories -- like removing the dead moth!
Thanks again so much, April, for sharing; and for addressing a topic of extreme relevance and challenge!!
Dear April: You are describing me to a "T". However, I am elderly and the myeloma is on top of me while my "kids and grandkids" are sandwiched from below. I am not on treatment, never have achieved remission, have high marker levels and am plagued by anemia and fatigue. Every problem seems to be such a challenge. What a disease. It is so hard to keep sweet.
I have just learned that I am out of remission, I was first found I had Multiple Myeloma in 2002, and elected to go to a Dr. who treated me with non conventional treatments. I had my blood work done each year and this month I showed a spike in my protein level. Which I knew something was wrong as the pain bones in my legs was so bad and of course so tired I wanted to curl up and sleep.
I leave the 1st of Nov., to back to the clinic and the Dr. who treated me in hopes for another remission. When in remission I had a tendency to forget I had Multiple Myeloma, which we all know stays with us, remission or not.
Somedays are better than others and those days are the ones the house gets cleaned and I can sit in my chair have a cup of tea and smile.
Hi April,
Your column is so very a propos for me tonight as I was just saying to my husband how tired I've been feeling lately. I don't know if it's the myeloma kicking up, or the fact that the past eight weeks have been unprecedented in busyness with helping my mom, after Dad passed, and then helping our daughter after her c-section. I've been so grateful to have felt well enough to do these things; but it's also very helpful to hear that I'm not the only one who feels extra tired. I tend to forget that fatigue is a valid underlying symptom.
Hi April
I thank you so much for sharing your story and to know multiple myeloma has effected you as it has for me.
It is so good to read the stories of other and know you have the same feelings.
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