Myeloma Lessons: You Can’t Make This Stuff Up
Sometimes I know what I am going to write about several weeks before the column is due, and other times it’s a last minute brainstorm.
For this month, the germ of an idea had been rolling around in my brain for a while. Yet, as you will see, it took an unexpected turn at the last minute.
The subject is the importance of goals.
It has been proven through at least one fairly rigorous study that positive thinking has no ultimate impact on a cancer patient’s prognosis. However, such thinking sure does help us get through the emotional toll of dealing with our disease and the treatments that we must undergo.
For many, including myself, one very concrete way to foster a positive attitude is to set goals. Doing so allows me to focus on something other than the negative of being ill.
Goals might be something as simple as walking around the block every day, or sleeping through the night. Or they might be something a bit more challenging.
If you know me – either through these columns or in “real life” – then you know that I have always been very active. So it was a drastic and discouraging change for me when, shortly after my first Zometa transfusion, I had severe side effects which caused so much pain in in my hip/pelvic area that I could barely walk. Coupled with the serious pain from a lesion on one of my ribs, I was virtually immobile.
But then I ran across the famous “Biking with multiple myeloma” Beacon forum thread started by Ron Harvot. This was inspirational and motivated me to set the goal of getting back on my bike, which I did shortly after reading the thread.
My goal for that summer and fall was to get back to the point where I could do my normal length rides without discomfort. By the end of the fall, I was back to that level.
But looming on the horizon was an upcoming stem cell transplant, eventually scheduled for the end of January 2014. My doctor wanted to do it sooner, but I was opposed to doing it during the football season. So we scheduled it for the week after the NFL conference championship games so I would have two weeks to come around before the Super Bowl. This timing also would allow for full recovery by the time it started to warm up in March.
During my recovery from the transplant, I used goal-setting to speed along the process. At first, my goal was just to walk around my house for 10 minutes, three times a day. Frankly, it wasn’t fun, but having set the goal sort of forced me to follow through. After the first week, I set a new goal of riding my trainer just up to the point where I began to perspire. I had a central line in my chest, and I had been told that I should not get the dressing wet.
Once the central line was removed, I started riding the trainer in earnest with the goal being to be ready to ride outside once it got warm. It was painful. Apparently, the high-dose chemo administered at the start of the transplant process has an impact on the muscles of the legs. But once the warmth arrived in April, I was ready to go.
For the outdoor season, my goal was simply to have a full, healthy season and to exceed the mileage I had ridden in the disease-truncated year of 2013. The riding was difficult at first; I had soreness that I had not experienced before. But eventually it went away, and soon enough I was riding normally. I finished 2014 with more mileage than the year before – goal achieved! – but no more than I had recorded in an average year before my illness.
For 2015 I had bigger plans. I knew that I was going to retire (semi-retire as it turned out) in April, so I would have more time to ride. For the first time, I set a specific mileage goal: 10,000 miles. And understand, this is outdoor miles in the sometimes harsh climate of Pennsylvania.
The season got off to a slow start. Mid-January through much of March was not just cold, but the trails where I ride in cold weather iced over and stayed that way. Even a crazy person like me won’t ride on ice.
Eventually it warmed up, the retirement happened, and I was piling up the miles. I have three bikes, each with its own computer recording the miles. Usually, I don’t keep close track during the year, waiting until December 31st to add the miles up. But this year, with such a specific goal, come September I started to take a peek.
On November 11, when I was ready to push off down the road, I knew that I only needed 36 miles to hit the goal. As I was riding, I kept an eye on the miles elapsed for that ride. When it hit 36, I looked heavenward and said a little prayer thanking the powers above for giving me the health and strength to reach my goal.
About 20 miles later, my plans for a post-ride celebration came to an end. While standing on the pedals climbing a hill, my right pedal axle snapped off, sending me crashing to the ground. It hurt – a lot!
The crash was so abrupt that the lenses popped out of my sunglasses even though the frame stayed on my face.
The result: many bruises, and two fractured ribs.
My original plan was to come home after the ride, make a sign with “10,000 miles” on it, take a picture, and post it on the Internet. After all, I had achieved a pretty aggressive goal.
Instead, I was getting x-rays, swallowing pain pills, and making sure that I kept my lungs clear by taking ten deep breaths each hour and forcing myself to cough despite the pain.
So goal achieved, thankfully, but I didn’t add to the total for almost five weeks. The ribs still hurt quite a bit, and I sure hope that the myeloma doesn’t interfere with the healing.
All I can do is shake my head: You can’t make this stuff up!
Goals are good because they help us focus on positive behavior and take our minds off what we are fighting. But I could do without the latest drama.
Andrew Gordon is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Andrew, I applaud your goals, but view your latest column as a cautionary tale. My body was absolutely destroyed by my cancer and now, a little over 2 years after diagnosis, I fear falling. I too loved to ride my mountain bike and hiking, but my physical efforts are now limited to walking, doing yard work, small home repairs, and painting. I was finishing my last painting effort and, while moving the small ladder I use, I tripped. The pain wasn't severe, but brought back muscle memory of the worst experience of my life.
I always read others' postings, including Ron's biking stories, and get a little depressed that I don't have the courage to ride again. This is quickly suppressed by the thoughts of what my PCM would say to me if I injured something, or the burden I'd place on family assisting me with daily efforts. My family supports me, but frowns on my house repair efforts. But at 50 years of age, my pride forces me to do all I can, while I can and pray that I don't experience that "You can't make this stuff up" moment myself.
Keep the stories coming!
Kully
Wow, Andrew, 10,000 miles in Pennsylvania, I am really impressed!! When I asked about your goals in my thread you said you were superstitious and did not want to jinx yourself, I thought that was funny then, but after your fall not so much. I suppose you could have had the fall just before breaking 10,000 miles and that would have been a jinx.
Congratulations!!
I obviously believe in everything you said about goal setting.
I live my private and work life around goals. Being a working pharmacist, that is a definite requirement. My goal interruption has a somewhat similar twist to it. I was exercising, walking, and increasing my physical activity to get off the extra pounds that 40 mg of dexamethasone a week did to my weight gain. I was cruising along with my goals till I stepped on our new golden retriever puppy's chew toy barefooted. I flinched, lost my balance, and fell to the floor, breaking 3 ribs. Went to ER to confirm what I already knew: yep, broken ribs. They hurt so bad my activities then were focused on just getting through a work day to maintain my health insurance to fight this terrible disease. But I healed up in time. Now 9 months in complete remission.
Karl – The important thing is to do what you can and what you are comfortable with. It varies from person to person, and there is no cause to be depressed about what you can't do. Focus on what you can do.
Ron – I swear that I jinxed myself when I thanked the heavens for giving me the health and strength to meet my goal. I don't remember if I knocked on my head to remove the jinx, so that must have been it. I still have pain, but I am back on the bike, albeit avoiding hills and limiting my time in the saddle.
Randy – I hate when an injury interferes, but it's even harder to take when it's not from working out but a random event like stepping on a toy!
Andrew - What an inspiring piece. You are absolutely spot on about setting goals. You obviously had a remarkable goal - 10,000 miles. Wow! We are so impressed. The mishap was quite unfortunate, but at least you were able to recover. During my husband's stem cell transplant on August 31 of this year, he set a goal of walking a mile around the 18th floor at MD Anderson. During his 20-day stay, he amassed 40 miles. Like you, there were days he did the walk even though he did not feel well.
We are home now and he continues to set goals for walking and jogging. He would love to get on his bike, but the roads are frequently icy here in the mountains of New Mexico. Rest assured, he will get on that bike once it is spring. We realize that goals need to be realistic but challenging.
Thank you for being an inspiration to us.
My goal is to live as normal a life as possible, day to day. I stopped playing ice hockey long before I got multiple myeloma because I realized that a nasty spill could end up crippling me, or creating a need for knee surgery or whatever. I realized I was not a young man any more.
After multiple myeloma, we all need to look at what the possible downsides of our lifestyle can bring. So moderation is the key, walking instead of running, gardening instead of mountain biking, taking more time to accomplish what we did before we got multiple myeloma.
This takes a mindset change, need to be more patient, but breaking ribs or legs really changes your lifestyle. We would all like to go back and do everything we did before multiple myeloma. However, for most of us, it is not possible without significant risk. So look for activities that stir the soul, provide exercise, and reduce the risk of injury. Being injury free is a real plus to enjoying our life with multiple myeloma.
I have for many years been a bit obsessive about keeping track of kilometers walked, time in the pool, or distances cycled in the summer, although my distances are way less than what many people would consider to be annual goals. This year I got a Fitbit in March, and have been keeping track of steps/km walked. The fun thing I found out about having this self-motivating, self-paced fitness tracker is that occasionally one wins a 'badge' for distance traveled. So far, I have walked with the Emperor Penguins from their nests to the ocean, down the Hawaiian archipelago, and, recently, down the whole length of Italy (1200 km)! I don't know what imaginary goal comes up next.
I haven't broken any more bones since my diagnosis, fortunately, but that made such a strong impression on me that I don't want to do anything that would cause more breakage. I have fallen a few times, on icy walks, and off my bike once at slow speed, but suffered no ill effects. I am sure that the bisphosphonate treatments I took helped to strengthen me a lot!
Thanks for the column, Andrew. Really good food for thought. Good luck with your 2016 goals also.
Andrew,
What an inspirational article. I'm going to try to mimic your accomplishments. I'm going to start with a New Years Resolution of not only 'sleeping through the night', but also sleeping through my naps.
Wish me luck
C
Eric,
Your comments provoked some thoughts.
On the one hand, since my diagnosis I have made some allowances for my condition. But I have never seriously entertained the thought of modifying my approach to riding.
I have many lesions like most myeloma patients, but none are really symptomatic except one in my ribs that flares up if I overdo things. I guess I should think more about not risking fractures, but my doc says fractures from an accident should heal pretty much like normal. And as some of the comments above show, you can break a bone doing fairly innocuous, non-risky stuff.
It's always a balance and I just love to ride too much to give it up unless I absolutely have to.
Hi, Andrew!
This is a great column. Thanks! Made me think about goals. I am just your average walker – not an athletic person – but I like to walk 30-40 minutes in the morning. Since my diagnosis (August 2013) and treatment, including a stem cell transplant (February 2014), I've been determined to stay as fit as possible to fight this multiple myeloma. I've learned that even trying just a little bit more walking really gives me more stamina and, frankly, confidence and a more positive attitude.
Also, just passing along that on the day I get my Velcade maintenance injection, rather than coming home and "vegging" on my sofa, I take a walk (not fast) around my neighborhood. That has given me loads more energy on those days. So, that is now my goal on injection day.
Thanks again for your column.
Like Eric, I would like to live as normally as possible, which for me includes regular swimming. After my relapse five months ago, I have not being able to swim because of endless problems. First weakness and a terrible nerve inflammation in my hands. Then hospitalization due to the darn thing sneaking into my stomach. Fortunately, lenalidomide started working immediately, and I started feeling decently and started eating again. In the meantime I had become seriously underweight. As soon as I was getting better, I had a flu and lost the weight I had gained. So, although I did not experience bone fractures, I was in no condition to live normally.
After two months of misery I finally joined a new, sparkling pool. I went there the other day. As I spent a few minutes in the Turkish bath, which I adore, I was all worried about being too weak, the voices of a couple of friends in my head saying “Don’t do it! It’s too soon! It will make you feel exhausted!” So I did not enjoy it. Then I tried to enter the water, but with my thinness and anemia, I found it too cold. I gave up. It felt like the defeat of my life! I had the full realization that I was at the mercy of the disease, as if even my identity had changed. I have been a swimmer for twenty years, I took many lessons, and I have style and technique ... but could not face the water because of how I am now.
That day I wept quietly on the phone with my sister, then later with my husband, and in the evening with a friend who visited me. I was like a child whose doll had been taken away from her.
I feel better now. I am gaining weight again. Next week I will try again. I will enjoy the Turkish bath and hopefully I will fight the initial feeling of cold and plunge in and start rebuilding those poor muscles, which have almost disappeared in the last few months. I will, I will.
Sylvia – It seems counterintuitive to some people, but activity gives you energy. Whenever I feel fatigued, just moving around makes me feel better, both physically and mentally. I know that when I was getting Velcade treatment, I made it point to go home and get right on my bike. Much better than vegging.
Annamaria – I am sorry that you have not been able to get back in the pool. But you seem to have the right attitude – keep trying. That's the most important thing. One thing that occurred to me is that if you do the Turkish bath first, because it warms you up, it might make the pool feel even colder. So maybe try to do the pool first. In any case, keep pushing toward that goal.
Congratulations on an incredible achievement, Andrew.
I think it's worth putting the distance you biked into some perspective so that people can really appreciate what you've accomplished. To bike 10,000 miles in 2015 by the middle of November, you had to ride your bike an average of more than 31 miles each and every day DAY of the year. 31 miles per day!
That's amazing. I know it's not something all of us can do, but I still find it inspiring.