Manhattan Tales: The Diagnosis
Five or six years ago, I noticed that my wife was consistently biking a lot faster than I was when we took bike rides on the weekends or when I met her on her way home from work.
So, as a 60th birthday present to myself, I bought a very lightweight bike constructed out of space-age material in the hope that I could keep up.
Alas, the flashy new bike didn’t help: my wife continued to outpace me. She is a tiny woman, but she also is two years younger than I am, and she did bike several days a week the four miles each way to and from her job at one of the local university hospitals.
So there was no real cause for dismay, and we weren’t racing.
After I had a couple of very serious chest colds, I perhaps should have suspected that it wasn’t just my wife’s good genes that made her seem so fast. But the colds resolved (after a lot of coughing and muttering that “I must have broken a rib after that coughing attack”).
We continued to take bike trips -- day trips on the weekend, and lengthier tours in the summer led by professionals with a back-up van.
Two years ago, in January 2010, another vicious cold appeared.
After a week, it had gotten much worse.
My doctor took a quick glance at me and a quick listen to my chest. He drew some blood but told me even before he sent it to the lab that I should be prepared to check in to the hospital. I could wait for the actual results but he had no doubts.
He called the next morning and insisted I be admitted.
Within a day of admission -- not counting the 14 hours I spent on a gurney in the ER waiting for a bed to open -- I heard the now familiar words.
Multiple myeloma.
These words weren’t entirely foreign to me. A close friend had been diagnosed with the disease less than a year earlier. But my friend had responded well to whatever medicines he was taking, and I hadn’t done any research on this arcane disease.
The third day in the hospital, the hematologist came by and he gave me my introductory lesson on multiple myeloma. The blood marrow tests confirmed the diagnosis, with a “good” prognosis due to my particular chromosomal pattern.
But regardless of the prognosis, as many people have noted, everything changes when you get the diagnosis.
After a couple of more days in the hospital with IV antibiotics, full body x-ray scans (I had indeed broken some ribs during those coughing attacks), ultrasounds, pounding on my chest, and heavy coughing to loosen the stuff coating my lungs, I was discharged.
I took another week off from work to get my strength back. And my second formal education began.
Two years and lots of Internet reading later, I have a whole new vocabulary. Infusions (a euphemism if I ever heard one), M-spikes, bone marrow, plasma cells, Revlimid, Velcade, Zometa, dexamethasone, prednisone, steroid therapy, stem cell collection, autologous and allogeneic stem cell transplants, peripheral neuropathy, mortality, morbidity, progression-free survival, necrosis….
This was the equivalent of a full academic course! And it’s been accompanied by physical and emotional trials, with plenty of ups and downs, and plenty more to come.
While I can still bike, I found after six months of chemotherapy that I could no longer continue with my job and deal with the schedule and side effects of treatments.
My myeloma may be in “very good partial remission,” and the physical effects of the chemotherapy (on most days) are bearable.
However, the emotional and psychological effects, particularly of the steroids, were far too strong to allow me to continue to work. And they also were far more insidious and dangerous than what was described by the medical team or on the Internet.
“Roid rage” is a hidden danger you won’t find in the fine print on the dexamethasone package. In my career and at home, I have been pretty good at avoiding conflicts, and I was thought pretty effective at settling legal disputes. But steroids are powerful drugs and have had a powerful impact.
Learning to calm down and not be overly aggressive has been one of my hardest tasks. And, two years into this treatment, I can’t say that I have been completely successful.
I’ll describe a few of my “adventures” in one of my later articles.
I’ve tried to be prepared with humorous responses to the minor confrontations that seem to appear pretty regularly in a crowded city.
It’s a much safer and healthier response than being aggressive or confrontational.
Stephen Kramer is a multiple myeloma patient and a new columnist here at The Myeloma Beacon. His 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 .
I was diagnosed in 2006 on October 31 with Multiple Myeloma. I thought I would be dead in 2 years if I was lucky. My blessing was my oncologist and him having the knowledge to send my to Little Rock Arkansas to UAMS. I was 90% infected when they found the cancer so I was not feeling very lucky with any kind of treatment to be done and at one point my kidney function was down to a 7. Yea I said the same thing. My doctor never put me on dialysis and took me off protocol pretty quickly and handled me day to day for 6 months. By the end of the 6 months and two stem cell transplants I was in remission. I have been in remission since March of 2007 and I still work even though I am on maintenance. I do Velcade and dexamethason every week and revilmade every night. I am a second grade teacher and even though I catch a lot of what they have, it is what keeps me going. I didn't choose the path I was lead down, but I have grown so much as a person. I have found the spirit of my soul and am at peace with what will happen one day, but in till then every day is a joy and a birthday.
We could probably have a whole section in the forums of roid rage stories. My husband made all of us cry and has complete amnesia about it! I'm glad you are still riding your bike!
Hi Stephen, I hope you are on the mend now and not subject to such side effects as 'roid rage', but it does take a lot to get thru all of the MM treatments, that's for sure. I found myself blurting out lots of stuff I had bottled up (still do at times!!) and that was disconcerting...it was as if my personality had changed.
The biking....my husband at the time of my diagnosis 2 and a half years ago was biking many kms a week, to work, and also on our biking pathways here. He dropped everything to look after me while I was going thru all the treatments. I really felt bad for him that he was giving up that valuable exercise time...now, he has a new light weight bike and is starting to get back into cycling. At least, he is taking in a 'spin' class regularly. So, come spring, he will be out in the fresh air and sunshine on the paths again. Happy holidays to you and your family..best wishes with your health also.
Stephen:
I'm looking forward to reading more about your unique myeloma story- thanks for sharing it. I'm sorry that you've had to join this unfortunate fraternity; all the best with your journey. Alas, many of us can readily identify with the love-hate relationship with dex. As a potent, effective med in combination with various novel agents, we love it. As a trigger for Mr. Hyde to make an appearance, we hate it! Happy Holidays & be well! Sean M
Stephen: Thanks for sharing your story. Most of us find out we have MM after noticing weakness or fatigue that persists. I look forward to hearing more in future articles. Nancy D.
Lori: Although I do feel a lot of sympathy for you and the family, I have to admit that it was good for me to read your comment that my "roid rages" are not mine alone. So, my condolences for the emotional stress my fellow steroid taker has caused you -- but my thanks as well for your mentioning it. I'll write a few details about some of my more crazy moments in a future column, and how (I hope and pray) I've gotten them a bit more under control.
Nancy S: Yes, blurting out some of those thoughts that we have been socialized to keep bottled up inside is indeed one of those unwritten side effects if the steroids. Of course many of those emotional reactions are really drug-induced reactions and don't have any rational basis. Another good reason why I'm trying to learn how to bite my tongue!
Sean -- Your characterization of how our attitude with dex is or should be like a love/hate relationship -- and not a hate/hate relationship -- is very much on point. I have not had to cope with any typical myeloma symptoms since my first six months of treatment -- I've only had to cope with side effects of what really are miracle drugs. How successfully I cope with dex is open to some debate (any number of apologies due to my wife). Certainly my experiments with prednisone were not successful, as you will read. But I lived to relate the tales, and, occasionally to look back and chuckle (and be thankful that I survived).
Steve,
I too am a biker and was diagnosed with stage two MM in Feb 2009. I have IGG kappa MM. I was put RVD with a monthly infusion of aredia. After 3 cycles my light chain numbers showed a complete response. After 6 cycles my oncologist started to lower the frequency and dosage. I was originally on weekly velcade with 40 mg of dex per week. Now I am on velcade every 2 weeks and the dex has been reduced to 20 mg every 2 weeks. the aredia is now once every 2 months. The revlimid dosage and treatment cycle has not changed, 10 mg every day for 21 days then off 7 days. So the new protoca@ is my "maintenance" regime.
The good news is I am still employed full time and do not suffer with any PN or any other serious side effects. The dex is the only thing that I have issues with. The typical hiccups, insomnia, moodiness.
I have increased my bike riding since my diagnosis and treatment. I have 4,700 miles this year. I road in the Hotter n He'll 100 in August doing the 100 miles in 106 degee heat. I also road in the Texas Time Trials doing the 6 hour shootout finishing in 7th place having completed 73 miles in 98 degree heat on a hilly course with a 15 mile wind out of the south. I currently am training for the Texas Senior Olymics. I turn 60 in May. I will compete in the two time trials, 5k and 10k. I need to average well over 20 mph to finish in the top 4 which is my goal. If I do then I will qualify for the nationals. I ride a trainer in my garage 3 times a week and do a group ride on Saturdays averaging about 50 miles during the winter months. I also go to LA Fitness and get in some Spin Classes when the weather is bad on weekends.
I have not had a transplant and hope to avoid it if at all possible. I have noticed that even with transplants most patients are on some form of maintenance program usually including revlimid and dex. So I am not sure that is much different than what I am doing anyway.
I hope that you can increase your riding. I have found that it has helped me increase my endurance even though my overall red count is slightly below normal. My blood pressure and resting heart rate have improved with my increased riding and I have lost 20 lbs since I started riding. I also lift weights for an hour twice a week. I have fallen a couple of times but have not suffered any broken bones, just bruised ego.
Ron
Steve,
I'm glad you're still able to bike, but sorry to hear that you had to leave your job due to the effects of the disease/treatment. For me, biking is probably the most therapeutic thing I do to counter the ups & downs that accompany our disease and its treatment. I only wish I could find a way to make spinning more enjoyable - living in Michigan I spin during the winter months, which doesn't provide anywhere near the psychological benefit as riding outdoors.
Kevin and Ron: Biking outdoors certainly fills a specific therapeutic need for me. The combination of the physical effort and mental concentration that bicycling offers eases both the neuropathy and the psychic pain that provide a little too much background music for me, particularly since I found I could not continue to work and take the meds religiously. Once the temperature drops down below 40 F, as it now often has in NYC, or the wind whips up along the Hudson, I'm exclusively a swimmer (with a few light weights thrown it to add some bulk to protect my bones from falls and from muscle loss from the transplant that is somewhere on the horizon). I'll be discussing a lot more in future columns. We are very lucky that to be able to continue with the physical activities despite the myeloma. So -- off to the gym!
Hi Steve,
I guess I've been lucky that I have only had to do 4 months of Dex before my transplant. I never really felt that rage, but I have a very bad temper that I had to learn to control a long time ago. The boys use to say I didn't fight fair because I would break noses with one punch, that was the reason for learning to control my temper. The problem that I had with Dex was the shakes and the fact that it was turning me into a Diabetic, and that scared me more than anything else. My husband is a diabetic and I know how many medications it takes to to control a severe form. I didn't know Dex could do this and found it frustrating; next time I have to take it I will try using a much lower dose.
Happy New Year!
Steve and Deidre,
I was originally on 40 mg of dex a week when I received my weekly Velcade infusion. It was the oral form with 10, 4mg pills. I am now on 20 mg - 5 pills, once every 2 weeks. The side effects I have had include 2 nights of insomnia, with the first night being the worst. The day following the medication: I get hiccups, my heart rate typically goes up about 20 beats a minute, and I get flush in the face. On the mental side I am more alert but my thinking is disjointed. I jump from subject to subject and talk faster. I also get more moody at times and have to really conciously step back and realize that the dex is doing it.
Although my medication has been reduced significantly I still have the same side effects, just at a slightly lower level. They total effect last between 48 and 60 hours.
The one positive that I notice is that the Dex relieves the arthritis I have in my big toe and I have increased range of movement.
With my bike riding, I avoid riding the day of and day following taking the dex, since my HR is elevated. After about 40 hours I can ride and do note that I can stand the "pain" of longer rides a little better. For some reason the dex, I guess being a steriod does have a temporary benefit on longer rides. It is not an anabolic steroid and is supposed to break down muscle but I have not noticed that effect. Maybee I am compensating for it throught the increased exercise I do.
Some people get the dex through infusion and take it more often than just once a week. I would think that would cause serious side effects since you would never come down.
Ron
Deirdre-- enjoyed your comment. I will write a bit more about my dexamethasone "issues" -- I have read that some people actually experience psychosis, and luckily I haven't gone that far. I want to explore some of the more difficult sides of treatment, which I feel are underreported, even when the treatment is successful in keeping the underlying myeloma under control. In addition, the treatment years are a new life phase/life cycle. I think that the treatment can, if you are lucky, lead to a whole new perspective on life, notwithstanding (or perhaps because of) the physical and emotional toll that the medicines cause.
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