Letters From Cancerland: Still
I have been silent for a couple of months, dealing with sea changes to my treatment regimen. These changes have thrown some major stumbling blocks into my life, and I am not yet ready to write about that increasingly touchy topic.
Fortunately, an intriguing and intense conversation with my good friend and sister-in-law Margaret provided me with a conundrum to puzzle over and this month’s column topic to boot.
I don’t have any answers, but readers might.
Margaret and I were walking and talking, as we love to do, when she asked me some questions about how much more impact multiple myeloma has had on my daily life and activities since we last compared notes. You know, general quality-of-life type issues.
I was puffing up a slight incline at the time. A longtime rigorous walker, I was huffing away because one of the newest issues is that I am starting to show signs of probable heart damage due to a combination of treatment and disease.
“Well, this is one,” I said, slowing a bit to catch my breath. “Walking is harder, but I am still walking.”
I then mused out loud in answer to the question. “I stepped off of Civil Service Commission and that was hard to give up. I had to, though, because it just took too much out of me. But I am still working.”
Pause.
“I am still volunteering at Legal Clinic. I am still writing, still baking …”
This is where Margaret interjected, objecting to my use of the word “still.”
What?
Margaret thought “still” was defeatist. It sounded of loss and irreversible change. “Well, I lost all these things (walking easily, serving on the Commission, blah blah blah), but look at what I still can do.” She thought that sounded as if I was conceding that eventually those pleasures (walking, Legal Clinic, work) would also disappear.
Well, dang, multiple myeloma is a chronic, terminal disease. The chances are excellent that eventually all of the pleasures in my life will come to an end.
Margaret retorted that she knew that. All the same, she thought using the word “still” was a negative choice.
I objected. To me, “still” is a benchmark, a bar I am still (that word again!) able to achieve. Okay, the bar may be getting lower in terms of my quality of life, but darn it, there is still a bar.
That discussion took place back in mid-July. A lot of water has passed under the bridge since then: the ongoing medical issues, the problematic treatment regimen, a lengthy driving vacation in early August that on the one hand was wonderful and on the other hand showed me that my days of lengthy vacations, driving or otherwise, are probably coming to an end (but I will still take vacations), the daily press of home and work and volunteering. And baking. Oh, and writing and reading.
And I am still mulling over the discussion.
Part of having multiple myeloma is coming to terms with it being progressive. I am not the person I was when I was diagnosed twelve years ago, I am not the person I was six years ago (halfway between now and then), I am not even the person I was twelve months ago. That is the reality of myeloma and the impact of treatment and disease on my body, my emotions, and my daily life.
But, and this is a reality of life and not just disease, I was not a static person before I was diagnosed. At 60, I am not who I was at 48. At 48, I was not who I was at 35. Or 25.
Or, God forbid, 15.
But I am still me.
I collect quotes, and this one, attributed to seventeenth-century poet Mizuta Masahide, is ricocheting around my mind as I write: "Since my house burned down, I now own a better view of the rising moon."
My house burnt to the ground. There is still a moon. I am still doing many of the things I want to do.
And I am still here.
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 .
Margaret should consult a dictionary. "Still," especially the adverb version of it, is not negative and does not reference the future. It means now, as before. You do now the activities you did before, as you have in the past. It does not suggest those activities may not continue in the future, nor that for whatever reason you might choose to stop sometime. And it's silly to think that as we age we can do (or even want to do) what we did in the past. Her comment suggests a more negative or defeatist attitude on her part than your use of "still" does. IMHO.
Bless you. I have no problem with your use of "still"! Carry on! 10 1/2 years since diagnosis for me. And my wife and I are about to go to Rome for three months. Life is good.
Thanks for the interesting column centred on one word 'still'. I hope that you are still writing columns for a long time too! When I read the title, the song 'Still, Still, Still' sprang to mind, since we have sung that carol sometimes for choir seasons:
"Still, still , still
Weil's Kindlein schlafen will"
(Hush, hush hush,
for the little child wants to sleep).
It is a beautiful peaceful song.
Wishing you all the best, and hope you are still doing everything you like to do this autumn
April - I loved this column. I'm not sure where I stand on the "still" issue, but I wanted to comment about you writing "I am still here". Bravo. My mother lived to be nearly 100 years old, and even in her late 90's, she told me, "I look in the mirror and I still see me"! I've never forgotten that lesson. Keep writing for us ... it really helps.
I love this column! My diagnosis was less than two years ago, but I have already had well-intentioned friends say I was being negative if I pointed out that multiple myeloma is incurable and a chronic, progressive disease. That doesn't mean I don't have hope. I am glad for what I can still do, but it is far less than two years ago, and most likely more than at some point in the next few years (could be wrong – wouldn't that be lovely?).
Dear April - It makes me a bit angry that someone else is judging your attitude. No one, unless they have walked in your shoes, can possibly know what it feels like to live with myeloma. Even those of us who have myeloma are each living with different challenges (bone damage, chronic pain, side effects from treatment, etc.). Quality of life can only be determined by each of us, individually, and it sounds as if you have done an amazing job with your own assessment. 'Still' is a marvelous word for those of us who can STILL do things that provide us quality and pleasure. Bravo to you!!
Maybe Margaret was having a bad day when you were talking to her. I think STILL is a positive term. My husband's favorite reply when asked how he is doing is: "I'm still looking down at the grass."
As usual, an interesting column!
Once you get to a certain age, the word "still" gets used a lot, whether or not you're a myeloma patient. I would still say that I still go to the gym, even if I had never been diagnosed with cancer. I would use the same word to describe how I eat, how I walk, how I hike, etc. I can see Margaret's point, but we all get older, and we all understand that there's a time limit on our physical capabilities. We all like to note the things we can continue to do despite the ravages of time and any sort of malady (myeloma or whatever). It's not defeatist, it's just real.
Thank you for a beautiful column, April. I like your last sentence so much. It's a call for us all to keep on despite multiple myeloma.
April, there might be changes in your body but you still have a strong spirit and you still have that determination. I have not started chemo yet, I am still smoldering but I know one day it will happen and I will have to start chemo. Hang in there. I just keep telling myself that I am playing for time. Time that maybe a drug or treatment will be discovered. It is still your body, not the myelomas'. Good luck.
Forgive them, they simply do not understand. They try, they really try, but this is a lonesome journey much of the time for the the warrior. The spirit and determination you have, April, in all you do is so inspiring, you continue to create a purposeful life and you adapt so well to every obstacle that is placed in your path. I wish you continued strength and some good news real soon!
Yes, indeed, you're still here – poignantly, sweetly, significantly.
April, I much prefer your "still" to my "giving up". In my 9 years with myeloma, I have had to give up a lot of what I feel makes me "me". One by one, the activities by which I define myself have fallen away. In the last year – with my myeloma getting more aggressive – gardening, photography, horse back riding, and long walks with my dogs have been given up. Myeloma is a thief. I hate to be negative and have managed to remain positive through most of this journey, but it does get hard.
Thank you April. I agree with the others about 'still'. I'd never heard of multiple myeloma before the possibility of my having it was raised by my GP in April of this year. It has been a steep learning curve, with blood tests, bone marrow biopsy, skeletal surveys (both x-ray and MRI scan), starting chemo, dealing with side effects (not too bad by third cycle, after a bumpy start), and biggest of all, breaking the bad news to my family and friends.
I'm grateful for this heads up that this is ultimately terminal. Certainly concentrates the mind. I was able to break this news as gently as possible to my loved ones. I'm at Stage 1, so am responding well to treatment.
I had ovarian cancer 16 years ago and it also was early Stage 1. Lots of surgery, but no chemo. I was never the same again and had to accept a lot of changes to what I was able to do.
I don't feel sorry for myself. I'm just grateful that it has been early stage both times, giving us all time to adjust to the coming changes. I've already had a 16-year reprieve, and I've gone a long way down my bucket list of things to do and issues to resolve.
I have found my spiritual path through life to be a great support to me, and my sense of humour lifts me up at the worst times. It may seem crazy to be cracking jokes and making quips at the worst times, but I find it really helps to keep things in proportion and lighten the atmosphere for me and those around me.
It's great to find fellowship now, and while I'm sorry any of us has myeloma, it's great to 'still' be keeping on, a cheeky girl to the end! I hope you 'still' keep on too, April. Thank you for your inspiring column. Love to all from Roseanne.
Dear April,
I always enjoy your column. Your thoughts and words are strong and inspiring.
I thank Paul Simon for the wonderful use of still - because we all need to be a bit off center at times ... maybe a lot of times when faced with these troubles:
My very very best to you.
Hi April,
STILL is incredibly appropriate word and concept for us! I am STILL here! I STILL work a bit. I STILL play a bit. I am STILL in treatment and will be forever. Myeloma is STILL around and sadly will be forever. We are STILL who we are on so many levels, but myeloma does change us. We can STILL be us and adapt to all our physiological and psychological changes. Accepting and dealing with myeloma in my life is STILL challenging for me, but I am STILL here almost 7 years after my diagnosis in December 2009!
Those who have never had to deal with "chronic" conditions and diseases really don't get our circumstances. Be you, STILL do everything you want and can do! I STILL love this column after reading it several times :))
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