Northern Lights: A Medical Detective Story
You may remember from my first column the strange events going on with me in the spring of 2009 that culminated in a bad fall and back injuries in July of the same year.
We got X-rays taken after the fall that showed four vertebral fractures, one in the upper and three in the lower back. Probably the worst one was from the fall. All were compression fractures, which are seen in cases of osteoporosis. That was the diagnosis I had received six months earlier, and I was already on medications for that condition.
The pain in my back was very intense, and I was bedridden for 10 days, taking narcotic pain meds. It was very discouraging. My wonderful family rallied around and got me through those painful days. My husband obtained a walker for me, which allowed me to ambulate around the house.
By that point, it was beautiful summer weather, but I was mostly indoors. I had to watch Calgary's Stampede Parade on TV and saw the pipe band marching along playing 'Scotland the Brave.' I gradually began to heal up around the broken vertebrae, and after six weeks was well enough again to take two-kilometer walks outdoors, using the walker for support.
In July, after the injuries occurred, my doctor had also ordered some blood tests including screenings for excess calcium in the blood, creatinine, and protein in the blood and urine. The protein tests were high, but the rest were normal. The results were quite puzzling.
One of my daughters, a medical student at the University of Calgary at the time, had recently covered the unit on the skeletal system. She and my husband, a medical doctor, went over the notes thoroughly. I remember my girl saying, “There is another blood test that Mom needs!” Her statement to me stands out as a 'Eureka' moment for the diagnosis!
So, over to the lab we went for another test. I was still pretty sore, and this was about the fourth trip I had to take to the lab. As you can imagine, I was not mad keen to go out again to get my blood taken.
This last test was an immunoglobulin test, plasma electrophoresis. The results showed very high levels of gamma globulin and a “spike” in monoclonal proteins, also called M-spike.
We then got an appointment with a hematological oncologist. He told me he thought I had a bone marrow disease called “multiple myeloma.”
He performed a bone marrow aspiration, with local anesthesia, on my left pelvic bone to extract marrow cells to be examined under a microscope. That hurt. Luckily, it was a quick procedure.
He also left with me a requisition for X-rays from my head to the top of my knees, more blood tests, and instructions to collect all my urine in a jug for 24 hours.
I completed those tests and then went on a week-long holiday with my husband and our daughters to Las Vegas, which we had booked earlier in the year. I took the walker along, and we enjoyed shopping, eating at restaurants, and seeing the show “The Lion King.” The trip was the highlight of that summer for us.
Upon our return to Calgary, we met with our oncologist to discuss the bone marrow biopsy and the other tests.
The good news was that I did not seem to have any other fractures or broken bones beyond the first four.
The bad news was that my blood tests showed some anemia and the M-spike. The bone marrow was 50 percent full of mutated plasma cells, which left no doubt of the diagnosis: multiple myeloma.
Having now had all this evidence revealed to me, my nervous system took over and I almost fainted away. However, putting my head down between my knees, I took a glass of water to steady myself.
Life had changed, and I was now a cancer patient! I was in the hands of the medical profession for now.
───────────────── ♦ ─────────────────
I will be including quotations at the end of each of my columns going forward. The quotation for this month is from Hippocrates, who wrote “Prayer indeed is good, but while calling on the gods, a man should lend himself a hand.”
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Thanks for the second column. I am enjoying reading about your journey. In fact you have inspired me to take part in being a writer as well. I was officially diagnosed in January. I started this journey in late November with a trip to a rheumatologist for pain in my knees. And that was the beginning. I'm in my second week of therapy in Northern California. I'm taking Revlimid 25mg days 1-21. Dexamethasone 80 mg.1xwek and Zometa is scheduled for first IV on March 20. I've been learning a lot about my disease.
What a great daughter and family you have to be so persistent!!!! It is my opening line when I get the opportunity to speak, "So. How did they find YOUR Myeloma?" Most of us have quite a story to tell and they are all rather fascinating. Thank you for sharing yours.
Ed, I'm in NorCal as well and we just had a meet up for the first time with other patients/caregivers for lunch in Roseville. We are all in around Sacramento.
Hi Ed and Lori, Thanks for your nice comments. When I started to write up my journey, Ed, I just had to express it somehow in order to make some sense out of it. I really recommend journalling...if you like to read, you will be inclined to write also. And if you have journals written from a specific time, the memories come flooding back if you re-read them. So just keep putting pen to paper, or typing to keyboard!
Lori, I an sure I would not be half as well as I am now were it not for the help of my family. I think that my daughter has chosen the right profession being a doctor...AND my other daughter is a nurse! So I have been in good hands all along.
The 'lunch bunch' sounds like fun! Enjoy!
Greetings, Nancy, Ed and Lori. I have been devouring the many pages of the Myeloma Beacon (first in August 2011 shortly after MM diagnosis) and now, again, as I am about to get an Auto SCT, and trying to arm myself w/ as much info as possible from 'first person accounts'. Your stories and comments have been uplifting to read. I have been on SQ Velcade, Dex, and Aredia since August, Rev from Sept-Jan (it did not agree w/ me and was taken off of it after small blood clot in eye.) I, too, am from Northern Calif (foothills) and feel I am getting excellent care in Roseville. My MM counts as well as blood counts are all in the normal range at this point...hence the go ahead for the transplant, which I am nervous about considering I feel so good right now and must have all that hi-dose chemo soon. The support of our family and friends have been invaluable. I have taken to writing long emails about my "updates" to those loved ones and am saving them for my journal. It seems the words flow so easily and are very cathartic in dealing with this new "phase" of my life. By the way, my diagnosis arrived after a completely routine cbc at my Primary Dr's. request and it showed "anemia"..I had NO symptoms, was active "young at heart" 62 yr. old gal. My bicycle was mounted on the back of my car as I ran in for the blood test..and was planning a 3 day biking trip w/ gal pal when my world came to an abrupt detour after many tests and ultimate diagnosis: IgG Lamda M.M. I feel fortunate to have found the Myeloma Beacon and started with Pat Killingsworth articles. Last night I viewed his experience with Transplant and saw the pics of his new "hair do"..I am collecting scarves and hats for my journey. My husband and I carry hope in our hearts and I wish the best of care for all of you fellow M.M.'ers as you travel your individual journey on this new road we are all on.
Hi Patricia...thanks for sharing your story too! It is a real shock to get a cancer diagnosis...glad you were not yet having too much physical damage from the disease. Are you still cycling? There are cyclists who are columnists and also some who post here. There is still ice on the Bow River but the pathways are clear and maybe should get out for a ride soon. Am still very cautious about falling but am stronger now than I was at the time of dx. And, have fallen on the icy sidewalks a couple of times and survived that.
We are off to San Francisco for a medical conference in April and am really looking forward to that trip. Spring would be well advanced in your area, no doubt! I want to see Telegraph Hill, the cable cars, Chinatown, Fisherman's Wharf and MORE! Have been thru SF while changing flights but haven't visited there since I was four years old! So it is about time we had a trip there!
It's great that you are writing up your 'journey' as you go along. Although we all have variations of the same cancer of the blood, it seems that everyone has a unique experience, and also their own way of approaching the treatments, etc. Obviously I think it is helpful to record all of it...maybe you can save your e-mails in a folder for future use. Very best wishes to you!!
Hi Nancy!!
Thanks for ending the suspense!!
I loved the Lion King!! Did you?
Hi Suzie Rose...We all loved the Lion KiNG! The actors with the large masks on stilts were awesome and I love the score too. I could hardly sit straight due to the back pain but it was worth it.
Hello, again, Nancy,
Actually, I am just a recreational cyclist w/ either my friend, or my husband, but love the exercise, fresh air, scenery etc. as we make our way on bike trails away from motor vehicles! I have only fallen once (into a ditch) before diagnosis! I haven't ridden since last July...maybe this coming fall after my transplant??? I will be glad to just be able to take nice walks by this summer...hopefully.
I actually grew up in S.F....my husband lived two blocks from me! We loved roaming, exploring and playing in the City by the Bay..it still takes my breath away when we go over the Bay Bridge into the city and it shines like a jewel sitting on the water w/ the Golden Gate in the distance. It's a great place to visit and sounds like you have a lot of fun activities planned. We grew up near the Zoo, Ocean Beach + Golden Gate Park..our old stomping grounds! (great for bike riding or roller skating when they close the main drag to cars on the weekends) The new DeYoung Museum is quite spectacular, I am told, haven't visited yet.
For the past 33 years we have made our home in the Sierra Foothills, half way between Sacramento and Lake Tahoe, and we do enjoy this area very much. I miss the Ocean..but find Maui fills that need when we are able to travel there! (This year M.M. sidetracked those plans).
Be careful of those icy walkways...wow! "got to protect those bones!" We went for a long walk the other day, one of the few in the last several months due to my fatigue factor and I noticed it in my foot bones...thought I had broken a toe..but must just be tender unused tendons..orrr..that other thing..M.M. reminding me we have a fight ahead of us..and soon!
Happy travels!
Thanks Patricia....what a nice description of the Bay area! We will enjoy that visit I hope. I also love the ocean....last beach walk was last month in a driving rain storm in Comox B.C. with my Mom, sister and her dog!
I can understand that the biking isn't working out right now, since taking all of the chemo drugs is tiring! The pain in your foot bones could also be a bit of neuropathy. Even in winter, I wear my running shoes, since walking a few km in winter boots has caused heel pain. If it is too difficult, with snow cover, I can go to the gym and walk on the treadmill. People complain about ''being on a treadmill' but am v. glad to be back to walking a lot. And there are stationary bikes there too...
Have a nice weekend!
Patricia,
Where do you live, I live in meadow vista, right above Auburn. There is a group of us now who are forming a support group. You and your husband would be most welcome. It really makes a difference to share and talk with other caregivers and MM ers.
Hi Pat and Christina...I think that if you 'register' as users here, you could send private e-mails to each other with personal info. Or if you wanted me to connect you, I have an e-mail address too. It's listed in the 'about us' column.
Thanks, Nancy,
I don't see where the email contact is, but I will keep looking:)
Thanks Chris, I got your e-mails and hope that your support group planning works out really well.
Hi, Christina and Nancy,
It's so nice to be connecting on this site w/ people in my same situation! I am not familiar with the emailing part..as I just signed up the other night to "comment" and then got totally lost (til 2:30 a.m.! on Dex) reading so many interesting stories!!! I am completely exhausted, and yes, Nancy, I think the foot pain IS Neuorpathy. It is burning like a hot poker, from middle of one toe to top of my foot if touched or bent a certain way...but I can walk fine! Trying to tidy things up before my BIG adventure of SCT that begins next month..scared, anxious to just get it over with, and hope I don't have too 'bad' a time of it w/ side affects. I am saying goodbye to my hair while I still have it. I read your comments about the ice chips and mouth wash..hoping to avoid sores. My husband is SOOO supportive that it is no doubt I am getting thru this becuz of him. One more Vel injection this week and then I get a two week break before "port, chemo, neupogen..." Very stresful thinking, no wonder I am tired....The support group near Auburn sounds wonderful..I am just not sure we have the time left to attend, but would love to email, Chris, if anyone in the group likes to do that...I am taking my computer with me when we "head out" each time...I will look in the "about us" column for a link to email and give you mine...
Hi Pat...I sent you the e-mails and it is good to have other people to mull these treatments over with, also. Hopefully the neuropathy will ease up after you finish up the Velcade, but I still have some even now. It is not debilitating fortunately, but a reminder of the drug regimen I was on. And treatments are improving all the time too, so hopefully after the chemo you will just feel a whole lot better, and the SCT will go by successfully too. Thanks for all your input too! Oh! I see you are getting a 'port'. I had a central line....that is probably a more recent improvement.
Nancy & Pat,
Nancy~I have enjoyed reading your columns on my mm journey--it is so interesting to see the journey of different mm patients--how they were diagnosed and treatment. Look forward to more of your columns.
Pat~Although I was diagnosed last May I did not begin treatment until 12/11 and completed this February and will begin my SCT journey at Duke starting with getting Hickman catheter & stem cell harvest end of March/beg April and transplant the second week of April.
Ready to begin the next step of this journey and then looking forward to recovering! Wishing you all the best with your SCT!
Thanks Carol...that's nice of you to say that. Hope my experiences are not too much information, but this MM journey was quite a searing one, and it is very good and cathartic to be able to share it.
Wow...Hickman catheter, that's something else new to me! Sounds like you and Patricia are more or less on the same schedule for the transplant.
I remember the Hickman catheter being called a central or main line. It is absolutely essential since they are taking blood draws so frequently, and you are on IV fluids the whole time. It is challenging ,taking a shower etc. But so worth it.
Best wishes for a great sct and recovery!
You're right! The Hickman catheter IS the central line....mine had three lumens. I kept them covered with baby socks, fastened by hair elastics! That way they were soft to the skin.
Hi Patricia....me again. If you e-mail me at nancysbeacon {[at}] yahoo [{dot}] com I can connect you with Christina, who has a message for you! Thanks!
Apparently I am getting a "central venous catheter" and really don't know the name of it yet. It will have either two or three lumens! The part I do remember reading is how to take a shower...put lumens in a baggie, turn upside down, and tape it to my skin to keep water out. Thankfully, we will attend a class the day before the "install" ..lol.
Hi, Carol,
Thinking about you and holding "good positive thoughts" for you as you start your SCT process soon. I am right behind you, as far as schedules are concerned..
All the BEST is wished for you...may your cells be plentiful and your discomforts few...
Patricia
Hi Nancy,
Solving the mystery enough to name yourself a cancer patient under the care of the professionals is certainly a bit of comfort. Surrendering to a diagnosis was a relief to me...at least for awhile.
Thanks for sharing your story,
Pat
HI Pat...I know...without a diagnosis, how could treatments begin? I had the feeling at the time of just falling to pieces, both physically and mentally. Becoming more aware of the long standing issues of MM not being 'curable' does always leave one open to worries about the future, but I try not to dwell on that too much. Right now, I just go three months at a time, between check ups! Nice to hear from you! Your columns are so poetic and thoughtful, and it's good to know of others like yourself who have been pretty successful with staying well! Do you have any insights to share with us about that? Look forward to reading more from you (this week?).
Progress toward fundraising goal
for all of 2020:
15%
For more information, see the Beacon's
"2020 Fundraising: Goals And Updates" page