Northern Lights: Tilting At Windmills
Last month, my husband and I attended the first performance of the season of the Alberta Ballet, the classical ballet "Don Quixote."
Our regional ballet company put on quite an ambitious production, with Don Quixote riding a live horse onto the stage, which to me was a typically western gesture.
The ballet reminded me that I wanted to read the novel "Don Quixote" because the phrase ‘tilting at windmills’ had lodged in my brain, and I thought it might have some relevance to my myeloma journey. I wanted to go to the source of the phrase, which I knew was from "Don Quixote."
This novel was written (in Spanish) in two volumes, in 1605 and 1615, by Miguel de Cervantes Saavedra.
The novel tells the story of Alonso Quixano, a Spanish nobleman who reads so many novels about chivalry that he becomes delusional and decides to revive chivalry under the name Don Quixote. He sets out, accompanied by his friend Sancho Panza, on what he thinks are chivalric quests, during which he misunderstands many ordinary people and scenes as being part of his chivalric dreams.
In what I think is the most famous scene in the novel and the origin of the phrase ‘tilting at windmills,’ Quixote encounters a field of almost 40 windmills on a wide plain. He mistakes their revolving sails used to catch the wind for the arms of giants, and attacks them while riding on his horse, using his lance.
I think I have been ‘tilting at windmills’ at times in the last five years since my myeloma diagnosis. What I may have mistaken for menacing giants were probably only incidents that medical science can now manage.
I became somewhat delusional for a time when I was taking dexamethasone (Decadron). For example, I mistook the hooting of owls for a visitation by an ancient Roman goddess. I was adamant that the wearing the semi-precious stone turquoise in jewelry had healing powers.
For a while after diagnosis, I was ‘tilting at’ another giant in my mind. I was afraid I would not survive very long because the information and survival statistics I found on the Internet and in books were outdated. Whereas I know of people who did not survive very long even a decade ago, we now have better treatments available that give many of us more than a ‘fighting chance’ to survive longer.
At the time of my diagnosis five years ago, Velcade (bortezomib) and Revlimid (lenalidomide) had been recently approved for use here in Alberta (Revlimid actually was not available until six months after my diagnosis). I received and benefited from both drugs, and of course the literature I was reading did not include the extended survival associated with these drugs. It was only as time went on that I fully realized just how fortunate I was to have received these new drugs. I am less fearful now than I initially was about my survival, and of course I am grateful be alive five years after my diagnosis.
Another example of a windmill in my mind was the fear of never being able to hike or ride a bike again, after back injuries suffered due to the myeloma. My husband and I had lunch at a myeloma patient education conference with a specialist from the Mayo Clinic back in 2009, right after my diagnosis. He assured me that I would be back on my feet walking and riding my bike again. This was hard for me to believe at the time, but he was accurate in his predictions.
Just as there were four vanes on medieval windmills, a fourth delusional fear I had was that of dying alone and abandoned. Although this seems somewhat silly to me now, at the time it was a real enough terror. It wasn’t until I realized that I am supported emotionally by a large circle of family and friends, and that also there is a system for palliative care which would help me if I became terminally ill with myeloma, that I relaxed a bit about that fear.
Your mind can play tricks on you, especially when you feel isolated, in pain, and fearful of the future. As you probably can confirm, most fears turn out to be delusional.
The Merriam Webster dictionary defines ‘quixotic’ as ‘hopeful or romantic in a way that is not practical.’
It’s sometimes difficult to strike a balance between being overly hopeful or optimistic, as Don Quixote was, and recognizing that some of the windmills you encounter are just figments of your imagination.
That, to me, is especially true when it comes to dealing with an illness such as multiple myeloma, which is generally incurable, but treatable.
You wouldn't want to become an ‘incurable romantic’ and assume that a cure is imminent. At the same time, you shouldn’t fear the vanes of the windmills so much that they ruin your present day life.
───────────────── ♦ ─────────────────
The quotation for this month is an excerpt from Don Quixote: “Too much sanity may be madness — and maddest of all: to see life as it is, and not as it should be!”
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at
Related Articles:
- None Found
Greetings Nancy from France, I am glad to read that you are coping with our illness and maintaining a good spirit! It is interesting that you mention Don Quixote, I also have been looking at extracts from the film starring Peter O'Toole, "L'homme de la Mancha," and you draw some excellent comparisons.
We often mention the myeloma journey, but I like to change that word 'journey' to 'QUEST', I like to think of every day as being a victory, understanding of course that there is always the risk of defeat at some point in the future. The film incorporates that wonderful song, 'To Dream the Impossible Dream'. Many of the words are relevent to people who fight against illnesses. Best Wishes to All.
Hello Nancy. Excellent article and I empathise with the delusions and fears.
I too have tilted at windmills and Ian has reminded me of the glorious and evocative song, "To Dream the Impossible Dream," sung in the show by Keith Michell, The Man from La Mancha. It can move me to tears and that was before MM!!
I have decided to make it My Song and I will hum it to myself when I have need of it.
Thank you, Elizabeth from Scotland
Thanks, merci, Elizabeth and Ian! The reference to 'La Man of la Mancha' led me to a wonderful Youtube video of 'Dream the Impossible Dream' sung by Peter O'Toole (Quixote) and replied to in a song sung by Sophia Loren (Dulcinea)! I remember that song now. Beautiful music and more meaningful to me now than it would have been at the time the movie was made in 1972.
'Don Quixote' is such a classic tale and has many manifestations. Those 'windmills' of my mind keep on turning and some days I have to really resist tilting at them and wasting too much energy on that!
Nancy, I so enjoyed your column today re: Don Quixote. You express yourself very well and have so enjoyed your columns in the past. It is also so nice to hear from others all over the world — Ian in France and Elizabeth in Scotland, who are on this same Journey (Quest,as Ian says ) with multiple myeloma.
I live in Hamilton, Ontario, Canada. I was diagnosed in 2009 with MGUS and converted to myeloma in 2011, with my transplant 2012. I am in remission, with no maintenance treatment. I hear of many patients who are on Revlimid as maintenance, and so am anxious at times as to why I am not! I do realize that we are all unique in our myeloma. I would like some of your thoughts regarding maintenance therapy.
I am going to reserve the movie Man Of La Mancha from my library, and I will think of you three. Good health to you all, as we journey together.
Happy Thanksgiving to you Nancy in Canada.
Diana in Canada.
Thanks so much, Diana! Happy Canadian Thanksgiving to you and yours and all the readers of the Beacon! It's mild here, we got over that really damaging snowstorm of September and settled into a beautiful autumn. Was just doing some tidying up outdoors in the garden this a.m.
Yes, I now think I should try to learn to sing the song 'Dream the Impossible Dream', since it is so soaring, melodic and also really inspirational!
As far as Revlimid 'mainentance' goes, I was on a low dose of Revlimid for a year after transplant. After I eventually got into a CR, we left off the meds for the last 3 1/2 years, and I have had the opportunity to live normally for that time. However, I am no longer in a complete remission, so will have to write more about that later.
The trend from what I heard from myeloma specialists seems to be towards keeping patients on 'maintenance' indefinitely, but when I was being treated 5 years ago, that hadn't come into being here, at least in Canada. And as you must know, each province is different as to what drugs are available too! I heard an interesting talk by a French specialist who thinks that 'maintenance' is a great idea, but could not get the drugs approved by his government. I think that maybe once one is in a CR, the drugs may not be approved, since one isn't in 'treatment' anymore. I could be mistaken though, and of course every patient and every doctor have their own way of looking at this disease, and treating it! Personally I am grateful to have had time away from treatments. However, my type of myeloma is not 'high risk' with chromosomes and also it seemed to be slow growing, so possible I am 'lucky' that way!
Well, enjoy the festivities of our Thanksgiving, relax and enjoy your weekend!
Nancy, I'm sorry to hear you're no longer in CR. I hope you're still doing well and have found something to knock the MM back down again.
I really enjoyed this column. I to think the song "Dream the Impossible Dream" is very inspirational. I had my stem cell transplant in 2012 and have been in CR ever since. I was not started on maintenance then and am still not on it. I like to say that I have been on a chemodrug holiday for over 2 years and I am perfectly happy with it.
When I asked my oncologist and hematologist if I need to be on maintenance after hearing about so many people on maintenance, they both said no -- not at the present. If and when I relapse we may have to rethink that.
Thanks Holt, I have had a low level of 'M' protein since Jan. 2013, but just this week have started on Revlimid plus weekly 'dex' again!! That's a bit of a disappointment, but am hoping for good results with the treatments. Will report on that next month!
Joyce, thanks for writing in. The terms of 'maintenance', 'treatment' etc. are a bit ambiguous, but hopefully you won't need to get any treatments again for awhile.
I hope the Rev/dex does its job without too many side effects.
Me too, Holt! I think that it's the dex I have to be cautious about, mostly! I am on the strongest dosage of Revlimid, 25 mg, so am already a bit more tired than before (i.e., when I am not jazzed up from dex!). Yikes, it's a 'brave new world' we live in with myeloma treatments, but hopefully it will all be manageable. It's Thanksgiving, and we count our blessings too!
Nancy
I have been on the Rev / dex program for 11 months. My M-protein numbers is low and slowly trending lower each set of tests every 2 months. The first 4 months on the regimen, I got a "cold" each month. That has not occurred anymore. Every time I start a new 21 day cycle, I get an itchy head and ears on day 3. I then skip a day of Revlimid, and everything is fine for the remainder of the cycle.
In month 10 I picked up a DVT in my right leg, and am now on blood thinners, with DVT gone. So there are some ups and downs. However, I garden regularly, spreading 40 cubic yards of wood chips by hand, over our acre of extensively landscaped property. I do normal activities, a little slower, than I did before my MM diagnosis almost 4 years ago. My oncologist indicates that Revlimid maintenance is the way to go, so I am going that way, looking at MM as a chronic illness that needs routine treatment.
I also do much in the alternative and complimentary way to help keep myself as fit and nourished as possible. So far, this seems to be yielding good results. So don't feel badly about going onto the Rev / dex regimen, life is pretty normal and good on this program.
Nancy, what was the nature of your back issue related to myeloma? And how long was it before you could hike and bike?
Thanks, Eric, for the encouragement about the Rev / dex regimen! I am hoping for good results too ... something had to be done to stop my monoclonal counts and sFL chains from increasing, and this is the first attempt at that. The side effects do not sound too bad either.
Hi Pusser, I had three compression fractures in my low back and one across the back of my ribs. They were extremely painful at the time. I have never experienced such awful pain. But, after my counts were diminished by taking induction chemo with Velcade / dex, and I started bisphosphonate treatments with Aredia, which went on for three years, the fractures healed.
I was more frightened than anything about cycling again, and wasn't very strong either for hiking. But I think I got back on my bike about 2 1/2 years later. It could have been sooner, since I did use a stationary bike at the gym. Hope that helps. (I was scared of losing my balance and falling over, actually, but that didn't happen.)
Nancy,
Thanks for the uplifting article. They are the highlight of my month.
Thanks JoAnn! That's very nice of you to say that! I hope that you are doing well? Don't forget the Forum is there too if you have any questions to ask fellow patients, caregivers, and the physicians who help in the forum. I would like to thank my editor, Maike Haehle, who helps me with the columns. She is always upbeat and supportive of my writing efforts!
Thank you, Nancy, that's very kind of you. We thank you for sharing your experiences with the Beacon community.
Progress toward fundraising goal
for all of 2020:
15%
For more information, see the Beacon's
"2020 Fundraising: Goals And Updates" page