Northern Lights: Late Frost In The Foothills
“Nurture strength of spirit to shield you in sudden misfortune.”
– Max Ehrmann, Desiderata.
I was diagnosed with multiple myeloma in July of 2009 at the age of 58. In hindsight, I should have known that a misfortune was developing because things started to change earlier that year.
The spring of 2009 was a late, cold one here in Calgary. Snow storms buffeted us almost weekly into May. Most outdoor exercise seemed to include snow shoveling and walking with snow boots on. Dreams of flower gardens and spring activities were postponed until June.
I found myself hurriedly filling in garden pots at the end of May to create an annual garden for our back deck. There, the blooms would be safe from being nibbled by deer and rabbits.
I lifted a big pot full of seedlings and twisted sideways with it to set it down. OOOPS! I could feel something give in my low back. The pots could wait. In fact they never did get lifted over onto my back deck.
I thought ruefully that I was getting too old for some of my previous exercises. I had eased off of other really strenuous activities in the previous few years. For example, I ran two half marathons a few years ago but realized that they were really quite a bit beyond my capabilities, so just left it at that. I am not Superwoman!
The next day, it snowed heavily across the foothills into the Calgary area. I had been tentatively planning to go bagpiping in a parade in the nearby town of Black Diamond, Alberta, that morning. The parade was cancelled due to weather. My back was still sore, and I was glad to stay home. I did some quilting instead, using my new sewing machine.
We spent the middle of June in Banff National Park. The early spring flowers and bright green leaves were so appealing to the senses. I went hiking up Tunnel Mountain and back down, about six kilometers. I tried to ignore my low back pain, which was becoming more insistent. A female deer and her fawn were resting in amongst the spruce trees, and it brought tears to my eyes.
At the end of June, I attempted another parade, this one in Standard, Alberta. It was a run-up to the Calgary Stampede parade, but because I had not practiced much I was unsure of whether or not to attempt the long parade.
My low back was still very sore, but I still thought it was muscular pain. I finished the short parade but that half hour of activity seemed to pull another muscle across the upper back. Now I was really stiff and sore. Making my apologies to the band group, I explained that I was not feeling up to doing any longer parades at this time. I motored off home, stopping to pick up some red and white petunias for Canada Day on July 1.
With the holiday falling on a Wednesday that year, we had a long weekend ahead of us. We spent some time relaxing at home and went to a neighbor’s deck party on the 4th.
The following morning, I went to get up but hadn’t yet taken the muscle relaxant meds that had been recommended to me to control muscle pain and spasm. I ignominiously fell flat on my side on the floor, my muscles seized up and out of my control.
It took me about 15 to 20 minutes to gain control of myself to sit up. My husband was most solicitous in helping me back to bed where we tried to figure out what was the matter with me. This was way beyond any injury I had previously experienced.
That spring was a confusing one, and the diagnosis was still to come.
Nancy Shamanna is a multiple myeloma patient and a new columnist here at The Myeloma Beacon. Her column will be published once a month.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Thank you for sharing your story. I am interested in how you came to be diagnosed.
Nice to see you Nancy! I know you will be a great addition to the Beacon.
Nancy thanks for sharing. Sometimes when you are going through something like this "cancer" you can feel like you are the only one in the world having to deal with it. Of course I know that's not the case. But one can feel quite lonely. It's nice to connect with someone that knows exactly what you are going through. Again thanks so much.
Hi, Nancy S.! Thank you for so eloquently sharing your MM story - and for leaving us with a cliffhanger! Your account vividly conjured up the scary pre-diagnosis moment when I could not get myself up from the floor because of an intense, and quite mysterious, back pain. I look forward to your next article! Sean
Hi Nancy, thanks for your story and your quote from Desiderata. I often read the full prayer for inspiration. Every line has such a powerful impact on me and its themes are universal regardless of one's religion or beliefs.
Hi Carol, Lori, Steven and Sean....thanks for your kind comments!
I thought that how the diagnosis was made might interest you and the Beacon editors are kind enough to listen to my ramblings! Maybe you will have had the same sort of experience, Carol?
I know I did feel all alone in this at first too, Steven. After awhile I met other patients in my area and joined the support group, and more recently have started to read the Beacon, I have probably 'posted' here WAY too often! But I found others online to be supportive also...it's a very nice publication in the aspect of being interactive, as well as very informative.
Lori, I always enjoy your posts, and have read your articles with interest also.
Sean, I really like your columns, and think I relate to them well because Dilip and I have two daughters also. They are grown up now but I look back on those days when they were younger with great fondness and even nostalgia!
Hi Terry L...Don't you just love 'Desiderata'? I have had it tacked on my bulletin board for many years. Someone did a great version of it in song too ... was it Isaac Hayes? I can't remember, but that was wonderful too. Thanks for your note.
Thanks for Sharing Nancy. Can't wait to hear more, you left us hanging.
Nancy,
Wonderful writing. I'm a Waldenstrom's/MM patient in remission and I can't wait to get back on the pipes! It's been over a year since back pain got the MM ball rolling. Keep up the good and noble work: writing and healing.
Hi Art, Thanks! Like your posts! People like yourself keep the Beacon going, I think.
Hi Ross, OMG, another piper! Piping is quite strenuous and because of my back issues, I have left it for awhile, but maybe this spring can get back, or just play tunes on the practise chanter. I don't think I will do parades anymore, but those were the daze!! Do you normally play in a pipe band? I played with the Clan Maxwell since 1991 and it was a great musical adventure...now sing in a choir. I don't know the meaning of 'Waldenstrom's', and have seen it on this site before...perhaps you could explain what that means?
hello nancy, Did not realize that you went through so much and were an absolute trouper. I remember you playing the Beatles "twist and shout" while you were going through severe pain with twisting your back.
Nancy,
Thanks for deciding to write a column and share with us. I've enjoyed your posts, and imagine your column will be much the same. My father has always loved the pipes, so I've have grown up hearing them - can't say I was necessarily a fan, but this past summer while out on a bike ride came across a group practicing in a park. What a wonderful noise - stopped and listened for a while and found I enjoyed it, though I'm not sure I'm ready to buy any recordings yet. Hopefully you may have opportunity to play in this type of setting if you'r no longer able to march.
Hello Dil..(my better half)..thanks for writing in! It's rainy here on Vancouver Island, but nice to be visiting with my Mom and sister! TTYL.....
Hi Kevin..bagpipes are a really great outdoor instument..they are meant for that. Come spring, the pipes are calling!
Have enjoyed reading your columns. It's great to read about people who are managing their MM thoughtfully and researching it thoroughly too. I was thrown into it rather quickly and it was already quite advanced, but hopefully you and others like you can choose a path which will yield you benefits in terms of getting back your health with the least possible long lasting damage. And I am lucky in that I did recover really pretty well.
Nancy, thanks for sharing your story. I started with back pain also and got prescriptions for pain and muscle spasms which of course didn't work. I kept going back to the doctor who finally ordered blood tests after a couple of months which told the MM story. I still have back pain after a year and a half but is much better thanks to time and physical therapy. I am interested in how other people deal with the back pain and how they have been able to reduce or eliminate it. My doctors run out of answers. They mostly know how to order tests and prescribe pain killers. Surgery is risky and not viewed as a good option for me. I look forward to reading more of your story.
Thanks Norm...this is a 'sharing' sort of website..that's what I like about it too. In terms of back and other bone pain, I just don't lift anything very heavy at all. I found this out through trial and error...my bones were quite damaged from the MM. As long as I stay within my own personal weight limits, I am OK. I have had bad experiences when I forget about that, and it is hard to change a lifetime of habits, since before all of this I was quite strong. I still walk a lot, go to the gym and lift light weights, carry not too heavy bags of groceries, suitcases, etc. Am a lot better than I was at the time of diagnosis, which I attribute to the Aredia treatments and also just the self's own powers of healing. It took a while, but now I do the same hamstring, quad, arm, etc. type of stretches which I used to do when jogging, and am basically back to a 'new' normal, as they say, but at a lower level of strength. What do you do for your back and other bone pain?
Nancy S: Thank you for becoming a writer and sharing your experiences. This website has been a godsend for me. I live alone and my support group is not very strong. The MM patients sharing through the Beacon has been very comforting - just to know we are united against this disease and not alone. For those of us just starting this journey it is less scary to know what is to come and our options...
Monica S: Thank you for sharing about Leukemia & Lymphoma Society Copay & Financial aid programs. I contacted them recently and it appears that I will be elgible for their programs. Mylemona patients are elgible for up to $10K USA$ assistance in paying insurance premiums and Dr/RX copay expenses. I learned about this through your comments - thank you so very much!!! They have discussed reimbursing me retroactively to last July as well. It was not an unpleasant ordeal to apply either - unlike social security disability benefits which has turned into a messy legal appeal, etc. If anyone else needs help you should check it out, you do not have to be poor to qualify. They have a website to check it out.
Hi Nancy D...thanks for writing in...have you ever noticed how there are a lot of us named 'Nancy' in our generation? But I digress. I totally agree..the Beacon is a godsend and comforting too. It casts such a wide net that one can learn a lot from reading through it.
Our local support group (SAMP) was formed some years ago by just a few determined and public spirited patients and caregivers. They got guidance from the Cancer clinic and the oncologists, as to how to start it, I think. That has been a great group for folks in our area, and as well as being a social group, is very pro-active in fundraising, advocacy and putting on educational events. I hope to write about them more in a column!
Nancy S: When I say support group, I am referring to my family and friends. There is no actual support group for MM here. I see a therapist, but it isn't the same as talking to other MM patients in a group. I assume there just aren't enough MM people here so one hasn't been formed.
Hi Nancy...I think that there are also support groups for blood cancers as a whole. Maybe your cancer centre knows of one, if you have the time and are interested. Calgary is a big enough city now (over 1 million population) to have MM on its own for a support group.
Hi Nancy S,
My wife's name is Nancy too..
Thanks for your column. I enjoy your writing.
I have been out of the loop for a week or so. After posting how great I felt, I came down with a cold that seemed more like a flu. Of course it knocked me down more than normal but today I'm feeling better.
It is interesting to go through the "before diagnosis" stories. I wonder how long I had MGUS? Or how long I had MM?
I do know that for 15 years or so, when I did catch a cold, it always took me an extra few days to get over it compared with "normal" people. I'll bet I had MGUS for a long time.
Thanks for writing. Stan
Thanks for sharing. I look forward to further posts! So far, your experience sounds kind of like mine. Back pain...knew something was wrong for a while.
Hi Stan and Nancy, and Sherri! YES, isn't it funny looking back on things with the knowledge we have now. When I got a cold or 'flu' it would knock me right out too...I remember little signs and symptoms that if only I had been more aware of, or not in denial about, pointed to MGUS. I know now I had it for years, probably. Oh well, at least when it was diagnosed better treatments were available than there had been previously. I enjoy your posts too, Stan and Sherri, and hope you are over your cold now, Stan. Thanks for the compliment, too...I enjoy writing!
I would like to thank the editors of the Beacon for helping me to get my first column published here. Thanks to Boris Simkovich, for encouraging me to write, and to Maike Haehle, who proofread and edited my work. She tightened up the prose and straightened out any gaps in logic....I needed that! Looking forward to working with you into the future!
Nancy,
You are amazing..soo lucky to have you in our lives. A true survivor. Awesome that you are contributing to the website and I look forward to reading your future writings.
Dear Shanthi, having a sister-in-law like you is a true blessing! To have you come and visit us all the way from Connecticut in my hour of need cheered me up beyond belief! And I know that your prayers have been with me all along too.
Nancy - really interesting first article. I remember that summer well. I had not seen you for a month and when I did I noticed differences that were worrisome. Seeing you now is wonderful (well, it's always been wonderful but it is even more so now) - you yourself are a "beacon" of hope! I am looking forward to your next article.
Thank you for your kind words, Nancy. All of us here at The Beacon are very happy to have you on board as a columnist. We know that you will have many interesting stories, insights, and "lessons learned" to share with the rest of the Beacon community.
I also am so happy to see the positive feedback you've received from your readers and from other Beacon columnists like Sean and Kevin. You deserve it, of course. But it's also wonderful to see such kindness and support.
Hi NancyS!!
Wonderful suspenseful first column! I love suspense so this was right up my alley. I also have spent a lot of time retrospectively trying to discern what were the health changes I might have noticed prior to being diagnosed. I must say you have a much better handle on that then me. I can only recall being fatigued and walking at a slower pace. I attributed that to possible cardiac issues based on familial health history.
Your writing is great and keeps the reader intrigued. Keep up the good work. You are an enjoyable read.
HI Ann, thanks for always being a supportive friend, through thick and thin! You can see why I have been a little preoccupied recently...getting involved with the folks at the Beacon and trying to write an appropriate article. BTW, I helped Ann and others to put out a book in 2006, about Edworthy Park, in Calgary. That was a real learning experience...I did proof read it, along with others. before publication. We had experts write up chapters on various topics...history, geology, paleontology, botany, bird life, animal life, as well as it being a trail guide. We printed up 3000 copies, but still have a lot of books left. We received community government grants to do that nature education project! So it is so interesting to be once again involved with writing for a volunteer organization.
Hi Boris...you are a good muse and mentor. Thanks so much for including me, and for your nice thoughts also. it is a supportive online community, which is obvious from all the helpful comments and the other columns too. Thanks again Sean and Kevin for your thoughts. The Beacon is definitely right up at the top of my 'reading list' these days!
Thanks Suzierose, for the compliment! That means a lot to me....maybe I am onto something here! I feel that the better known that myeloma becomes, the earlier it will be diagnosed in others, and of course people will be interested in helping to find better treatments also. It is quite rare, after all. So if we can get more people reading and learning about it, it is all to the good.
When I looked back, and of course the retro-spectro-scope is always 99% accurate, compared to living in the present day, I could see a whole lot of little signs. Bruising when doing heavy gardening such as dragging tree branches around at pruning time, really bad colds that just cratered me, being really tired out one day out of seven. Then, later, less of mental acuity, and a sallow complexion. But I didn't really get it until stopped right in my tracks by fractured bones.
So, it was fortunate that i WAS doing very strenuous activities that spring that caused injury. That certainly got my attention!! I will explain more later (the next instalment.....).
Take good care of yourself, Suzierose, and have a good weekend, to everyone reading! .... Nancy
I'll bet there are many people who could be diagnosed earlier if all the signs and symptoms were put together sooner if they have knowledge of myeloma - I hope that others are helped by reading about your experience! I myself knew nothing about myeloma until one of our friends had it.
hI Ann...at least I could say that when I was diagnosed I too already knew someone with myeloma. That was a big help since I didn't feel completely lost with this unusual disease. I think that getting the diagnosis is still the trickiest part....I had symptoms but they were vague. Even bruising could have been explained away by the use of lo-dose aspirin. I was taking that to ward off heart problems!!
I never had even heard of it ! And the worst part I suppose, was when I had the compression fracture, I would literally stand up and the fall over. Literally just collapse. I went to see a nurse practioner, who misdiagnosed it as a sprain and gave me prescription ibuprofen at 700 mg. It wasn't till 6 months later I had an xray, and then was told a compression fracture,that was healing. Nada about MM,nothing.... Fast forward then another year, MRI and a truly horrible biopsy in the bone onT10, that MM was diagnosed with a plasmacytoma . I was in complete shock for weeks.
Well, that's all history now, onward....
Christina
HI Christina...thanks for sharing that info about your diagnosis. Even though I have a friend who was diagnosed about a year before I was, I never thought that I would also have MM! He was very good and kind, afterwards, to help me and my husband to get oriented towards it. It also helped us to go to a conference on MM that happened to be held in Calgary in 2009, put on that year by Myeloma Canada.
But I have heard lots of people express how they got diagnosed and unfortunatley a lot were like you...literally just hit painfully right out of the blue! I really hope that you are doing better now, and that you have had success with treatments. Keep in touch!
Hi, My name is linda Georgian and I found out I had Multiple Myeloma Feb. 3,2011. Eventhough I am a holistic health practitioner and have 4 college degrees, a master's and a medical assistant, medical technology background...I nEVER heard of multiple Myeloma before. When the medical oncologist told me, he never mentioned the word "cancer". I just knew that anything that ended in "oma" was a form of cancer. I had to ask him, "Doctor, are you trying to tell me that I have blood cancer?" And he said, "Yes". I sat there stunned for a minute. I said, "God, I don't have time for this!!" I live alone with my little service dog, Dolly. What am I going to do?" I didn't cry. I knew I had to either sink or swim and i definitely was not choosing to sink. The doctor then told me that I WAS going to New York City to see the most renowned Multiple myeloma doctor in the world at Mt. Sinai Medical Center, Dr. Sundar jagannath, medical director of the Multiple Myeloma Treatment Program. I was in NYC on March 1, 2011 with Dr. Jagannath. I could not say what a phenomenal doctor he is. Truly brilliant and extremely intuitive as i am myself. I was fortunate that I did not have any lytic bone lesions, I had no symptoms other than anemia and my hemoglobin was 7.1 before I went to NY. I had 2 blood transfusions in Feb. of 2011 and was up to 12.3. I write books for Simon & Schuster, so I am a professional researcher, investigative jounalism and reporting. I did begin an intense investigation of Multiple Myeloma. I called in certain people that I knew to help me. I knew that I had to be my own self-advocate and my now associates helped me. I gradually formed my healthcare team of 16 doctors, dentist, oncology nurses, therapists, etc. with Dr. Jagannath being the lead of the team. Dr. J as I call him for short had and has me on Velcade, Revlimid, dexamethasome, Zofran, and Zometa. I had a stem cell harvesting whereby they were frozen in case I needed them which Dr. J said that i would not need a transplant nor would i want to go throughthat high-dose ordeal and live through it. I would recommend that anyone who is sick in any way let alone cancer should be on an alkaline diet. Look up what acidosis entails and you will see that cancer cells cannot thrive in an alkaline environment. I drink wheatgrass powder juice with pure water 3 times a day and take Hawaiian Spirulina capsules...about 20 or so every day. Online there are plenty of sites on acid/alkaline diet. Ninety-five percent of the American diet is acid. You can get ph litmus paper and test your own urine with a small strip of it. There is a chart in color that will tell you what your ph is. Just go online a google ph paper. Try and stay away from sugar as cancer cells feed off of it. Vegetable juices are great if you have a juicer. DO NOT take ANY VITAMIN C if you are on Velcade....BECAUSE vitamin C destroys the Velcade chemo infusion or Velcade in any form...Velcade loses its myeloma cancer-killing effectiveness and do not drink green tes for the same reason. Look at labels. Ascorbic acid (vitamin C) is added to a lot of products and grocery store juices, yogurt, etc. I will stop here or else this will be a book. You will notice how much more energy you'll have taking chlorophyll drinks in between meals. I hope I have helped someone! Sincerely and God Bless You All, Linda Georgian
Hi Linda, Nice to read your letter, and I admire your plucky spirit. We all have to try to help ourselves as well as following the medical protocols that we decide to follow. I am with you on a healthy diet with lots of fruits and veggies. I didn't have any Vitamin C or green tea either when I was on Velcade. It's great that you have found a wonderful doctor too...that makes all the difference! If you have confidence in your medical team, you can just concentrate on getting better and doing the best for your health. Personally, I like to walk outdoors or do some other exercise every day. Wishing you all the best!
Hi Nancy...Congratulations on your first Beacon column.
I too am looking forward to next month's instalment...even tho I know most of your story (I think..LOL)
In addition to writing her new column..Nancy is a very valued member of our Southern Alberta Myeloma Patient Society Steering Committee here in Calgary . She is one of the busiest Myeloma Warriors I know!!
Gentle"You Rock" Hugs
Carol Westberg
Hi Carol!! I can't even tell you how helpful and supportive you and the SAMP have been for me and Dilip. Your 'gentle hugs' keep a lot of people going in our group.....hope to get a chance to write about our group too, for the Beacon. One thing I could say now, is that our annual 'Walk/Run' is on July 28. Pretty well guaranteed not to snow that day....for all you walkers and joggers, it is an 5km/8km event. It was lots of fun the last 2 years that we participated, and is a good fundraiser for research too!
Hi Nancey.From a fellow canadain,wondering if you considered
an american myeloma clinic,ie mayo or uams, or do you have
confidence in the treatment here in Canada--Thanks Gary
Hi Gary, Where do you live in Canada? i have been very fortunate so far to be treated here in Calgary at the Tom Baker Cancer Centre.
I doubt that I could afford to be treated in ANY other country, since don't have citizenship or insurances elsewhere. I read one scary article whereby a Canadian patient was treated at the UAMS with a double transplant and was $600,000 out of pocket. Our health care system didn't want to reimburse the family for that cost.
t am really interested in reading up on the new research and treatments though. One thing in Canada, is that any new drugs may not be available here for awhile, except in the context of clinical trials. Also, since our universal health care system is mostly funded by government, it is subject to the same political debates of any other government funded area. Our population is about 1/10th that of our neighbour to the south, and we would naturally have fewer centres and less research here. That is probably an over simplification, but gives one an idea of the difference in scale.
All of the doctors and medical people I have met in the last three years since the dx have been excellent. i wish that the system as a whole were funded better, since there are bed shortages in the hospitals and the cancer centre needs expansion. A lot of private fund raising goes on to help out the cancer centre. However, I am philosophically committed to the concept of universal health care. At least every patient gets treatment!! Also, the drugs provided to me for the treatments (RVD), are very expensive, but the system paid for them, since I was a patient there.
My husband and I had lunch with a myeloma specialist from the Mayo Clinic, Rochester, at a myeloma conference held here in 2009. He was very upbeat about our cancer centre, and thought it to be among the 'top ten' cancer cars in North America! That was certainly reassuring to us.
Hi Nancy- thanks for your thoughtfull reply. The comment from the mayo doc does sound very reassuring for you. My family member who was diagnosed 5 months ago with SMM at 55 lives in southern sask. Iam worried that in a prov. where only 50 or 60 people are diagnosed each year, prob half in north and half in south, combined with other possible problems ie access to newest drugs etc, that we might not be getting the most up to date treatment, by very good myeloma specialists.
Although we might not be able to afford all the treatment out of prov., maybe some form of consulation or collaboration, with possibly some treatments elsewhere might make sense.
Was thinking about contacting people in the support groups here in the prov, to get their thoughts on quality of treatment here.
Thx Nancy-we just don"t want to be looking back 5 yrs from now,wishing we would have done something differnt--Gary
Hi Gary...there are people in our support group from Saskatchewan, at least originally. You could contact the S. Ab. Myeloma Patients Soc. group too (there is a website). I don't have any personal knowledge of that, but I think that some of the Sask patients have come here for treatment. Someone I talked to recently also went the States for a work up and consultation... that is also do-able.
Enjoyed visiting Regina a couple of times! Waskana Lake is so pretty in the spring.
Nancy--thanks again, your steping forward is a great help to many MM patients--gary