Letters From Cancerland: Treading Water
A major portion of my job as mediator at our juvenile court is holding attendance mediations in the four school districts and career center in this county. The school year around here runs mid-August to late May. I am in the schools mediating by late September and go until mid-May as a rule. The busiest months are December through April.
My coworkers and I have come to call this period of time “the attendance season.” “I’m sorry, it’s attendance season and I can’t cover that hearing for you,” one of them will say. Or, “I’m sorry, it’s attendance season – I can’t do that.”
It is not us finagling our way out of work; we are all genuinely busy from early in the morning to well into the late afternoon or early evening. Because I cover all the districts in the county, I sometimes leave the house by 7:20 for an 8:00 a.m. mediation; depending on the day, I may not get home until well after 5:00 p.m. I have worked some weekends and holidays, trying to keep up in the heart of attendance season.
At a very recent attendance mediation, we met with a high school student who has to pass this year’s classes to have any shot at graduating on time next year. The assistant principal finally looked up and said, “You just need to keep treading. You know, treading water, keeping your head out so you can breathe. Do what you need to do, but just keep treading.”
The student nodded.
I nodded too.
I just need to keep treading.
This month the Central Ohio Symphony, our local symphony, finished its 38th season. It put on an all-Ohio concert, featuring Ohio composers, Ohio arrangers, Ohio soloists, and, of course, the entire orchestra and conductor, Ohioans all. Entitled “Hear Ohio,” it was quite a night.
Finishing the symphony season takes a little off my plate. I am not as deeply involved with the group as in years past, but the reality of being married to the symphony's executive director (as well as the principal timpanist) is that I am also married to the symphony. I live with it almost as closely as I live with my husband Warren.
It occurred to me as we struck the stage after the “Hear Ohio” performance that a lot has changed in me over the decade of being with Warren. In past years, I would be helping haul percussion equipment, bringing down signs, racking chairs and music stands, and doing everything possible to wrap up. (This on the heels of setting up for the concert days earlier.) And here’s the reality: I can’t do it anymore.
I am too tired. I am too worn down by treatment and cancer. I am too sick, even after sitting quietly through the concert (resting, as it were).
I. Can’t. Do. It.
Oh, I can help, and I did help afterwards. I helped collapse stands. I helped gather music. I picked up odds and ends. But mostly I treaded water.
“You just need to keep treading.”
My friends both here and by mail admonish me to slow down, pull back, don’t push so hard. I feel lousy whether or not I pull back, so why deprive myself of events and activities I enjoy and am committed to? I have heard I am working too hard, followed by the suggestion that I retire. Retire? My job is a source of deep personal passion and, on the practical side, also the source of my excellent health insurance. I am not vested in the retirement system, so all retirement would do is put insurance (and hence medical care) out of reach permanently.
“You just need to keep treading.”
I am at a frustrating point in my multiple myeloma trek. As an outlier, I don’t fit the norms, I don’t fit the research, and I don’t fit the expected reactions to medications. We still cannot get my INR stable despite a stable diet. I test low, but having a post-concert shake, I had two spontaneous hematomas in my lips from sucking on the straw. My oncologist talks of putting me on a meds holiday, even though he and my myeloma specialist feel a holiday may be unrealistic at this stage. And I feel lousy just about every single day, with or without rest, with or without being in my treatment infusion weeks, with or without anything.
“You just need to keep treading.”
Years and years ago, I took Red Cross summer swimming lessons at our county pool. As I got older, I was invariably in the 8 a.m. class. The outdoor pool was chilly at that hour (the summer swim team had it worse; they started at 7 a.m.). We would swim laps as directed and then our instructor would yell out “tread water.” He wanted us to rest, catch our breath, but keep our bodies warm for the next exercise. I haven’t thought of those days for a long time, but they come to mind now.
There are laps yet to swim. I just need to keep treading.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. 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 .
April,
Great column. Once again, you have given all of us something to think about. Treading water, keeping our heads above water so we can breathe. Sometimes easier said than done. I know what you mean when you describe that you really don't feel well. I too feel similar. I cannot recall the last time I truly felt good, where I did not think about the myeloma. I have now retired and my husband plans to retire soon. He wants to move to another state, build or buy a new home, get ready to sell the home we have, etc. Pack up, move, maybe rent until a new home is constructed, etc., and even though I should feel excited about that adventure, I just think about how exhausting the whole ordeal might be. I have treatment every other week (Velcade). I tolerate the injections ok, but I am tired most of the time, headaches, sometimes a bit of nausea (acyclovir twice a day), etc. Maybe sometimes I wish that someone would wave a magic wand and it would all be grand, but alas, I know it cannot be so.
Thanks again for your beautiful column and hoping your summer vacation comes very soon to give you a much deserved break from all the mediations.
Thank you, April. As usual I really related to your column. You are a great writer.
April, thanks for sharing about your busy life! This would be a lot for anyone to keep up with, let alone someone on active treatments for myeloma. It seems that the symphony season and the mediation system for juveniles correspond; one is a daytime job and the symphony is in the evenings. Hope you can catch a break before the next busy round in the fall and enjoy summer too. It is nice that you have a job that you enjoy and that it provides you with good health benefits!
I only sing in a community choir, but the reality is that we also stack chairs, help with events, etc. I had to stop stacking chairs for example, due to having had surgery last year, and also because as a myeloma patient, I am not supposed to lift heavy items either. I volunteer at the choir by helping with their newsletter, though. Other volunteers bring in the sound equipment, choose music, organize events and serve on the board of directors. Performing and listening to music is inspiring and helpful for one's peace of mind.
My husband is also a musician, jazz musician. I used to play electric bass with his groups. But nine years ago, myeloma took that away. I also helped with setting up and striking, no more. Can't say I miss that part!
For Cheryl: when you mentioned moving and building a new house, this could be way too much to ask of a myeloma patient. You're going to need help!! My answer to when I feel something is beyond my strength is – it's okay to say "no" or ask for help.
Thank you for the great article, April.
Thanks April,
Your columns readily correspond to what I'm feeling in this myeloma-burdened trek through life. My myeloma specialists have enabled me to live well with multiple myeloma these past 14 years, but I'm beginning to resent my weakened state. Actually, resentment indicates that I have some fight left in this 68-year old body, so it's a positive element in continuing the battle each day. My stamina has diminished over time. I substitute teach here in town. The colds I pick up from the kids and teachers keep me sidelined longer each season, but not the entire season.
You write well, April. I look forward to your next column.
Aloha April,
Another excellent column. While you are much sicker than I am at this stage, I too often feel like I am treading water. In my case, I think this is mostly due to the medication.
One thing you said, "I feel lousy whether or not I pull back, so why deprive myself of events and activities I enjoy and am committed to?" really rings true to me.
I am not in the camp of slow down and take it easy – unless it really makes a difference. A friend of mine once explained that if you feel like crap anyway, why not feel like crap while you are doing something you enjoy? This attitude is what keep me active even when I am not at my best.
All we can do is keep "treading water." My goal is to skid into my grave sideways with a beer in one hand and a fishing pole in the other.
Much Aloha,
Tom
Dear April,
This column was so powerful and even lyrical in describing your struggles with multiple myeloma. I have been battling this disease for 6 and 1/2 years, and am enjoying my second remission after 3 years of several treatment protocols. It is a welcome reprieve. I wish this for you.
I was struck by the analogy to swimming, and remind myself that treading water is a way to rest while still in the water. I hope you have some days to "float" and not even have to "tread". I have referred your column to others I know who have cancer, and who are "treading water" in their treatment. I believe your words speaks to many of us.
I wish for you some reprieves from the treatment. Please keep writing. You help all of us with your honesty.
Maureen
After (yet) another hectic week--due to changes in Ohio attendance law that just went into effect, the attendance season is running later and later into the almost finished school year--I find myself at Saturday panting slightly. Yesterday, my colleague arrived at the school just after I did, slid into a seat next to me, and said, "I had to ask myself if I am at the right school even...it is all blending together." That's where all of us are, myeloma or not.
We are all treading water. I read above of potential move (Cheryl), of community chorus expectations (Nancy) [an aside: the number of chairs to stack is always infinite, be it chorus, orchestra, or legal clinic], and another musician (Julia) who knows the less glamorous side of the music industry. (You have not lived until you have wrestled an amp or a bass or a keyboard or a drum kit (preferably in multiples or combinations) out the door, down the steps, and into the car.) All of your comments resonated deeply with me. Tom as always made me laugh after he made his observations.
Thank you all for the heartwarming comments and encouragement. You may smile to know that Warren and I took time yesterday to have a quiet evening meal away from the hustle and bustle, away from the projects calling for our attention, and away from the Symphony. We talked, we shared, and, for that interlude, I felt as if I were out of the pool for a little interlude.
Thanks for this column April. I crawl out of a very long winter during your namesake month. I am optimistic when feeling well, then get gloomy when contracting a respiratory infection. That is when it becomes necessary to remember your excellent advice to just keep treading water.
April, amen to your thoughts in this column. I have had similar thoughts over the past two years. I am in a bit of a strange situation as well. My myeloma seems to be stuck in some ways; my M-spike is not increasing despite me being on an active treatment holiday for the past two years. That said, it is also not going down, and I am not in remission. All my counts are low, platelets are abysmal, and my reds keep me in a chronic state of being out of breath and low on energy. I have some energy in the morning, but it is mostly faded by early afternoon. So I often feel like I am treading water, but getting tired while I do it!
Hang in there. I don't know when my situation will change, but I am sure it will at some point and then we'll be back to Revlimid, Velcade, and dexamethasone (RVD) or something else. I feel like I am standing guard on the Great Wall of a new movie release – waiting for monsters to attack, but never knowing when it will happen.
I also can't do what I used to do. Some positions have opened up where I work recently, and many people have encouraged me to apply, but I tell them I. Just. Can't. I can no longer do the stress, the meetings would give me the heeby-jeebies with all those people present, the long days – no. I am not the same person I used to be, so I know exactly what you are saying.
That said, I think many of the comments here are still useful. We are who we are. We should seek to find joy in every day. I appreciate my M-spike is stable, I love it that I am still here and enjoying my boys as they go through life. I value each day I have with my wife. Life is good. It is just different.
Thank you for taking the time to write! -- Anton
April, enjoyed the candor and strength of your column, and looking forward to your next one. Wish we could lend each other health and energy the way we used to be able to donate a sick day to a coworker. Yes, I worry about you when I don't hear from you; we probably all do. Your writing resonates so well, and lends encouragement even when treading water. If you have any extra energy for reading, I suggest a children's classic called The Hokey-Pokey by Jerry Spinelli. Blessings
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