Myeloma In Paradise – Lessons On Living With Multiple Myeloma
I have been living with multiple myeloma for over four years now.
While I have no illusion that I am an expert on being a myeloma patient, I would say that I am past the beginner stage and into the intermediate level.
My disease was discovered while looking for the cause of some severe mystery colon inflammations I had been having for over two years. After I was diagnosed, I first took a “wait and see” approach for about six months.
When my free light chain levels became severely elevated, I was treated with Velcade (bortezomib), Revlimid (lenalidomide), and dexamethasone (Decadron) for 10 months. At that point my stem cells were harvested in preparation for a stem cell transplant. However, it was decided that my treatment had been effective enough to wait on the transplant, and that instead I would go straight into maintenance therapy using just Revlimid and methylprednisolone. I have been on this maintenance therapy now for about three years.
Let me tell you about some of the lessons I have learned during this journey so far.
Lesson 1: Be patient.
Not just a little patient, but extremely patient. We’re talking Moses-wandering-the-desert-for-40-years patient.
It begins with the patience required to get past the initial diagnosis phase. Once you are diagnosed with multiple myeloma, or any cancer for that matter, you will think that every ache and pain is the Grim Reaper knocking at your door. He’s probably not; those aches and pains were often there before. Time makes this phase better. Just be patient. Eventually you will be able to figure out what pain is myeloma related and what isn’t.
Next you will need to be patient with your understanding of multiple myeloma. It is a complex disease that hits everybody a little differently. It takes a while to understand your individual disease. I found that in time with some of my own research and lots of talking with my doctors, I have a basic understanding of how my disease works in my body. It takes time.
Patience is also required in great abundance for the amount of time you will be spending at your doctors’ (plural intentional) offices, the lab, the imaging center, the pharmacy, and the parking garages of each of these. Think of this as your new part-time job. It’s not something you really want to do, but since you have to do it, you might as well not get upset about it. Try to be patient.
Lesson 2: Take stock of your life.
Using the patience I described above, wait until the shock and awe of the diagnosis wears off, and then look at where you are at emotionally, physically, professionally, and economically. Decide how you want to spend the rest of your life.
While this step seems obvious to some, to others it is just too hard to get past the difficulties of the disease in order to take this step. To me, the real danger is just wallowing in our disease and not making the most of what we are given each day. This step can take a herculean effort when you are in pain, debilitated with weakness, and broke from paying for medical treatments. But if you can see past these difficulties, you will realize you have a value beyond just being a patient.
You are a huge influence in somebody’s life. Many times in lots of people’s lives. Use the time you have to leverage this influence to benefit them and you will be richly rewarded.
In my case, I figured out that I was spending way too much time and effort trying to create a future life for my wife and kids and not enough time and effort enjoying the present with them. It’s an easy trap to fall into. Once I took stock, I decided to use my emotional, physical, and economic resources to enjoy our lives now. We determined that our time together was more important than the financial legacy I might leave them with.
Lesson 3: Find a doctor you trust and like.
Please do not make the mistake of just accepting whatever doctor happens to come your way through a physician referral system. If you are not happy with your current doctor, find another. There are over 900,000 active doctors in the U. S. alone. You can find one you like even though it may not be easy.
Physicians groups, hospitals, insurance companies, governments, and even your current doctor may stand in your way. They all have their reasons for why you must accept their choice for your care, but the bottom line is that it is YOUR care, not theirs. Your reasons for liking or not liking a doctor are as varied as there are people on the planet. It doesn’t matter. They are YOUR reasons.
What does matter is that you trust your doctor. Unless you are medically trained, you will be faced with a complex set of medical terms and decisions that you will need to have interpreted. This is especially true early on in your diagnosis. Do the work to find a doctor you believe in.
Lesson 4: Don’t let your doctor be God.
What I mean by this statement is that you need to take charge of your treatment. The awesome doctor you worked so hard to find is still just treating a disease. He or she needs to know about you and your goals with multiple myeloma. You need to be the one to ask enough questions, do enough research, and listen to your body enough to make the final decisions.
As I said before, multiple myeloma is a very individualistic disease. Its treatment requires individual approaches. Let statistics be a general guide only. Give the doctor you trust all the information about your symptoms, your treatment reactions, and your goals so that he or she can create a treatment plan that works for you.
For some of us, the goal means going for a symptom-free life as long as possible. For others it means going for as long a life as possible. For some it means being as comfortable as possible regardless of the length of our lives. Usually it is some combination. Only you know what is best for you; don’t let your doctor make this decision for you.
Do you have any important lessons to share?
Aloha and carpe diem!
Tom Shell is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Good stuff, Tom. All great lessons.
Hi Tom,
I've had multiple myeloma for 8 years now and your advice is right on. Thanks! The only thought I'd add is look for a clinic, institute, university, etc. that not only treats multiple myeloma, but also conducts research into multiple myeloma.
The majority of doctors/oncologists who treat multiple myeloma follow approved "standard practices," while the second group above is working on developing the next generation of "standard practices". This group has many more tools in their toolbox, so to speak. A real comfort if your multiple myeloma decides to act up.
All the best, Steve
Thank you, Tom.
This is a good read. I am currently dealing with a relapse after 20 years.
Taking stock in what to do next, other than cry.
Hello Tom,
Excellent article.
I've been on the same treatment path as you: RVD, no transplant, and currently on Revlimid for maintenance since 2012. While enjoying life as best as possible, I do wonder how long this relapse will last ... and how I'll proceed when it ends.
Wish you the best
Great advice. I am an 8.5-year survivor also on maintenance with stem cells on hold in case I do a transplant. I am truly blessed to have made it this far as well as I have. I am encouraged to read the comment of Cheryl above that she is relapsing after 20 years. Wow. Cheryl, I wish you well and am so glad we have options! Wishing us all well and am thankful for this community of patients.
Thanks for another great column Tom. I always think of myeloma as a marathon with many bumps in the road. I have to accept that or drive myself crazy.
Tom
Great discussion. Patience with a capital "P" is certainly key to a lot of issues facing people with multiple myeloma. I would like to add, along side having the best doctor possible, is learning as much as you can about the disease, treatment options, and managing side effects. I particularly liked your attitude toward enjoying everyday with your loved ones and not worrying about building the future life. Enjoy every day, the future will be looked after by your caring for each day. I have had 5.5 years since my diagnosis, with no stem cell treatment. Velcade, Revlimid, and now Kyprolis. I hope we all can match Cheryl's 20 years. Thanks for the great read.
Hi Tom,
Thanks for another great column. I was diagnosed with multiple myeloma in 2013, so I'm a step or two behind you in experience. All four of your lessons seem important based on what I think I have learned so far. And it really is a continual learning experience.
One other lesson I think/hope I've learned is to try to not second guess myself once I've made a decision. Sometimes it's easy to think, "If only I had done X instead of Y with my treatment ..." But that's not going to change where I am right now. Instead, I try to keep focused on, "What is the best path forward from where I am right now, given what we (my doctors & I) know right now?" Not always the easiest thing to do, but I think it's much more productive than the "if only ..." route.
Mike
Thank you, Tom, for the article. I am from Kenya and multiple myeloma is not known as much. My dad has symptoms leaning towards the condition, and the haematologist suspects as much. We will know for sure this Friday when the results come in. I am grateful for the informative article as I did not know of the condition until the doctor mentioned it. I hope for the best and pray for all of us here in this journey.
Hi, Tom!
I am thankful for your column and also the comments of others. The longevity of folks with multiple myeloma gives me, a three-year survivor doing very well on Velcade maintenance after Revlimid, Velcade, and dexamethasone (RVD) induction therapy and a stem cell transplant, a lot positive attitude.
Thank you especially for Lesson 2 about living in the present. Something I have to share with others is that I have found a good way to start my day is just to take time to reflect, perhaps read a devotional, and gather a feeling of calm for the day ahead.
Hello Tom,
Thank you for another well written article. I use all your lessons and yet have to regularly re-visit for how to renew them. Right now "Patience", and "Live in the Present" are what I am focusing on. In addition, with my newest relapse with symptoms, I am also "Taking Stock of My Life". Keep writing.
Thank you for the article. My multiple myeloma history began last January with a stage 2 diagnosis. I am 73. Have been on Velcade, Revlimid 25 mg for 6 months, and dexamethasone on Fridays and Saturdays. The good news is that now I am "effectively in remission". The present medications are 15 mg Revlimid, Neurontin, and dexamethasone. The only serious side effects have been extreme abdominal distress at the beginning of treatment, some sleeplessness, weight gain, some neuropathy (almost disappeared), and now sweating. Little in the big picture when evaluating the benefit.
It's been really advantageous to have a cancer clinic in Florida and now in Massachusetts. Can't tell as yet if they learn anything from each other. The treatment remained the same.
It's wonderful to read of your longevity and of others that joined in the conversation. I wasn't sure and have no expectations of years allotted to me, but it is comforting to know of your success.
Thanks so much for all of the comments and updates. I am sitting here in a fog as I got the diagnosis yesterday. I go in for more tests today to figure out staging and treatment options. Certainly a different kind of wake up call for the start of the week. I truly believe it is the stories and advice of others that will help us all get through this as best we can. There is a lot of unknown ahead but isn't that really true for everyone.
I am sure I speak for everyone when I say "Here's to joining a club that I never imagined being a part of, but let's make it the best damn club we can."
Aloha Steven,
So sorry to hear about your diagnosis. You have found the best place I know of that is full of people who are in the same boat.
This is a VERY stressful time for you. It will get easier! Please read my column titled "Diagnosis is its own disease". It is about exactly what you are going through right now. Remember that these columns are only our opinions, but collectively we have "done that/been there".
Good luck and hang in there!
Aloha
Tom
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