Letters From Cancerland: Tunnel Vision
Living with multiple myeloma for the last decade, I have tunnel vision. It’s myeloma this, myeloma that. It’s the oncology appointment every five weeks, the bottle of Revlimid (lenalidomide) on the table, the peripheral neuropathy, the blood draws, the whole nine yards of myeloma. Even this column: myeloma, oncology, death, and treatment. Myeloma, myeloma, myeloma.
Tunnel vision.
Not that myeloma isn’t a major factor in my life. I’m not suggesting that a little positive thinking or a different focus would allow me to zip through my days worry-free and without a care in the world (other than that pesky fatigue and the occasional stumble when my feet are really numb).
Like it nor not, multiple myeloma is a permanent part of my internal and external world. After all, I do live in Cancerland. And the passage between the outside world and Cancerland is not a magic portal or a rabbit hole or a wardrobe, but the Myeloma Tunnel.
I have walked through the Myeloma Tunnel for 10 years. Sometimes, all I can do is focus on my feet in the dimness, hoping I don’t stumble. Sometimes I look up and try to catch a glimpse of the light ahead, be it the light of remission or the light of oncoming traffic. Sometimes there is no light.
Sometimes, though, it’s good for me to look outside the Myeloma Tunnel, even if I am walking through it.
A monthly foray outside of the Myeloma Tunnel is our monthly local free legal clinic serving walk-in clients with low incomes. Always the third Tuesday of the month, our clinic is among the very few clinics in Ohio that is staffed solely by volunteers. I am one of them; I help coordinate intake, keep records, and serve as the official baker. We just celebrated our 11th birthday in October. For our birthday, there was birthday cake. For our December clinic, there will be live music and extra goodies on the food table. I will come home that night exhausted in a satisfying way and, at least for the three to four hours I am at the clinic, out of the Myeloma Tunnel.
This year, our December legal clinic coincides with the first night of Hanukkah. You are supposed to light the menorah soon after nightfall, but I will be at the clinic, serving clients and volunteers. So the menorah will have to wait until I get home. I am banking that watching the first candle burn down will allow me to look beyond the Myeloma Tunnel at something far more significant than my IgG count.
My husband Warren enters his own tunnel in the month of December. He will be in the December Performance Tunnel, which is not as onerous as the Myeloma Tunnel, but has its own demands. By the time the clinic and Hanukkah roll around, Warren will have had four rehearsals and four performances with three different groups in three different cities. Because I am married to him and the symphony, I get to cross out of Cancerland through his tunnel every December. The great thing about the December Performance Tunnel is that it is much shorter to get through and there is always light at the end of it.
After Warren emerges from the Performance Tunnel, we will rush pell-mell to Christmas and the end of the year. I don’t know what Christmas holds this year in terms of which family members are where; we’ll play it by ear. New Year’s Eve is always spent quietly at home. My work slows down for those last ten days or so of the year, but Warren’s does not. We manage.
In the midst of lights and cards and ornaments and gifts, it is easier to focus on the homemade biscotti and peanut brittle and not the myeloma. But the Myeloma Tunnel always beckons. In those waning days of 2014, I will have lab work just before Christmas and an oncology appointment the next to last day of 2014.
January holds the challenge of a solo trip to Oregon. Will the travel wear me out? Or my ball-of-energy granddaughter? I’m not sure how I will travel, hampered as I am by having to walk through the Myeloma Tunnel to make my connections. Chicago O’Hare is big enough with its own tunnels; I am not sure I need the additional burden of the Myeloma Tunnel.
But I am sure of this. En route to Portland, we will fly over various mountain ranges, including the Cascades. Ralph Waldo Emerson wrote that the “health of the eye seems to demand a horizon. We are never tired, so long as we can see far enough.”
That high up, assuming clear weather, I ought to be able to see plenty far enough, far beyond my tunnel vision.
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 .
Thanks for the thoughtful column, April. I think that the holiday season can be too busy sometimes, which leads us into the New Year a bit tired already. As I am now back on treatments, I have had to slow down a bit, and had to skip some of the performances for my choir. People were understanding about that, but even if they were not, have had to make allowances for being tired! And, as you say, every time I need to have blood tests done, its a reminder of the 'Myeloma Tunnel'! I am glad that the Revlimid is working well for me though.
I hope you have a nice holiday season, and enjoy your trip to Oregon.
About your peripheral neuropathy, I started getting it after my ASCT. Gabapentin (Neurontin) kinda helped, someone suggested alpha lipoic acid (supplement aisle), didn't work first month, then I started taking it at night, same time most of the PN happened. That seems to work better.
April:
Bless you for extending yourself thru the clinic. I'm sure you could just "phone it in",...but you don't.
Pell-mell. I thought that phrase vanished 20 years ago.
Travel well to Portland. Good awaits you there.
As always, well said.
R
Well written and right on the money. April, the point you made about your feet going numb, and the fear of falling is the thing that bothers me the most. I'm in my 7th year of being in Myelomaville. To be perfectly honest, the way the doctors explained things to me when I was first diagnosed, they were talking about possibly dying in about two years. I'm just on 5 mg of Revlimid every other day, and of course pain medication as needed.
I don't understand how they can have so much success with the treatment of multiple myeloma. But yet so many of us in Myelomaville have yet to be able to get a medication to deal with the neuropathy. I just can't understand why they have not found a treatment for this side affect from the chemo treatments. The Revlimid seems to make it worse.
Does anyone reading this have anything they may be taking to help alleviate this terrible neuropathy. Sometimes I just feel like cutting my feet off. Any suggestions or treatments that help would greatly be appreciated ...
Hello John,
Sorry to hear that you've been struggling with neuropathy from your myeloma treatment.
In the Beacon's discussion forum are almost 50 different discussions on subjects related to neuropathy. You may find some suggestions for dealing with it, as well as other patients' experiences with it, that may be helpful. This link will take you to a list of neuropathy-related discussions in the forum.
Me, too, April. Hope I make ten!
Thank you, April. You always bring a smile to my face. You state the blunt realities of living in the Myeloma Tunnel but with a humorous twist. I agree that great things and fabulous memories await you in Portland. New tennis shoes or riding boots are the answer to your worries about stumbling.
And thanks for the insight into your hectic holiday schedule. I also view these type of things as a positive. It adds a distraction to our medical concerns, and the concerts must add such a bit boost to your enjoyment of the holidays and life in general.
A note to John: My doctor prescribed Lyrica for me, twice a day. A bit of a battle to get the insurance approval, and a little difficult to refill because of federal regulations. But the medication has made a HUGE difference for me. I still have some peripheral neuropathy, but it is more of a nuisance level as far as pain is concerned. Good luck to you!