Sean’s Burgundy Thread: A Letter To Myself
I have to admit that I am not exactly an expert on the science of multiple myeloma.
One area that I do have some expertise in, however, is what I have ‘felt’ during my intense, four-year battle royale waged between medical science, myeloma, and me.
As a natural born daydreamer, I recently imagined what it would be like if I could magically send a note back to the newly diagnosed Sean Murray of four years ago. Knowing that I was largely ignorant of multiple myeloma and grossly unaware of what was about to hit me, what would my letter say? Perhaps it would look something like this:
Dear Sean:
Yikes! What in the heck were you thinking? Multiple myeloma! Really? Couldn’t you have saved us all a lot of trouble by entertaining something like chronic male pattern baldness or a nasty addiction to knuckle cracking?
Anyway, I’m sure that it’s not your fault that you have contracted myeloma. Pretty sure, anyway. Mom did tell you to stop chewing on those No. 2 pencils. Time will tell, I suppose.
I know that you are in a state of shock because of this mysterious diagnosis, so I want to share some important tips with you that might make your upcoming trek through Myelomaville a bit easier. And I know what you’re thinking. Jimmy Buffet didn’t coax me into using the word Myelomaville, though he says to remind you that ‘we are party people and things will get better.’
Now understand that I am not some wacky soothsayer doling out supposition. Experience has been my teacher. I have learned these things I am sharing with you by putting on the gloves, deliberately climbing into the ring, and duking it out against myeloma day after exhausting day. I will say that myeloma is a dirty fighter. You’ve been warned.
No doubt there are a lot more than these ten things that I could impart, but this list will get us started. Now pay attention. And put that pencil down!
1. Breath: Make a habit of taking deep, calming breaths. Yes, I know that you have been breathing for years, and yes, I know that you have painful broken ribs and fractured vertebrae, but focus on drawing those deep, purposeful breaths anyway. No excuses! You will be astounded at the benefits of this simple practice. MRIs and PET scans will be easier. Sleep will come faster. Your concentration will improve. Your ultimate goal is to string a bunch of those breaths together for a very long time. Say 30 or 40 more years. Keep doing your part, and Mr. Hemoglobin will do his.
2. Change: While it appears that the sky has come crashing down on top of you, there’s no need to rant and rave like Chicken Little. Believe it or not, your world isn’t ending. What is actually happening to you is much more akin to ‘change’ than anything else. You have often counseled others that ‘change is inevitable.’ Practice what you preach – put your myeloma where your mouth is. Keep moving forward. Be flexible. Go with the flow. Manage and live with these ongoing changes as best as you can.
3. Grieve: As you undergo treatment and actively engage myeloma, you will see many things that you enjoy doing diminish or disappear from your daily life. Briefly lament the loss of the familiar, if you must, and then get on with it. Hear this, being stuck in a depressing morass is not very becoming on you, nor is it productive. You will eventually feel better. Your favorite pursuits, in some form or fashion will return. The bass will still bite when you get back to the lake, the stars will shine when you choose to look up again, and food will once again taste like, well, food. Give yourself some time.
4. Pain: I wish that I could assure you that your experience with myeloma will be absent of pain. Friend, you will know significant pain. But you can handle it. Thanks to surgeries, targeted pain medications, and chemotherapy, your pain will largely be controlled and tolerable. Follow your doctor’s orders, be a patient patient, and you will not drown in the pain of broken bones and tangled nerves that envelope you right now. It will get better. I promise.
5. Fears: You know that weird, irrational fear that always rises when some well-meaning medico approaches you with a needle? The one where the walls start closing in, your skin grows clammy, sweat floods your brow, and you feel like passing out? That one. Unfortunately, blood cancers have lots of blood tests, and thus, lots of needles. Do this: Just before you walk into that lab the next time, say a prayer that you will never again be afraid when your blood is taken or when you get a shot. Trust me on this, it will work. You will conquer your fears.
6. Alone: The tremendous weight that you feel on your shoulders right now will not be your burden alone. Many caring people, some veritable strangers, will step up to share your load. It may take time for you and them to understand their role in your illness, but they will be there for you. Learn to let them help. And prepare to be amazed at the courage, strength, and camaraderie of your fellow myeloma patients and their caregivers. They will teach you many lessons. You will not be alone.
7. Friends: In your illness, you will discover the wonderful depth and breadth of the love and affection that your true friends have for you and for your family. They often times won’t know how to help you with myeloma specifically, but that’s okay. The beauty of their friendship and the closeness of their companionship will prove to be a source of immense comfort. Do not shut your friends out.
8. The Pros: You are about to meet some brilliant, dedicated, selfless people serving on your medical team. You will be fascinated by their talent, their skill, and their dedication to making your life better. That’s what they do. Hold them to a high standard, you are worth it.
9. The Girls: Face it – you married ‘up,’ as your friends would say. Know that Karen will lovingly, steadfastly, almost fearlessly, honor her vows to love you in sickness and in health. I say ‘almost fearlessly’ because you need to know that she will be, at times, beside herself with a fear that she will try to hide from you. She will, above all, be afraid that she will lose you. Understand her struggle and do your very best to take care of her.
When you adopted those two beautiful girls from orphanages in China, could you have imagined how important they would be to you? For them, never give up.
10. Believe: After all of those years of reading, praying, and talking about your beliefs, now’s the time to put your faith into action. Open your eyes, and you will see the hand of God in a multitude of areas of your life, and especially through this illness. There is no weakness in your trust. Many won’t understand this, but your gratitude and faith will grow exponentially as you run this race. No matter the outcome, all will be well.
There is a lot more that I could write, but this should keep you busy for awhile. Keep laughing, and keep fighting.
Sean
P.S. Make sure you chew on ice before your stem cell transplant; mouth sores stink. And don’t eat that egg salad sandwich from that dining cart downtown; you’ll pay for a week if you do. And the chemo will make you lose weight; so, punch some holes in your belt, or else they’ll fall down in front of a waiting room full of people at the infusion center. And don’t…
Sean Murray is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .
What a wonderful exercise. I plan to write my own "letter to myself." We may not have the power to apply the wisdom of today to our earlier days, but these truths are valuable going forward. Thank you, Sean.
Sean, this is a beautiful gift to your former self. I will be passing it on to my wife Kate. I don't know why it hit me hard, other than it being so spot-on and life-like; Comfort in knowing someone is experiencing the exact same scenarios, I guess.
Your column here was the first thing I found and read on the web - literally in the hospital room (on their wacky webTV) immediately after hearing of Kate's MM diagnosis 12/19/2010 - and I have been following every word since. You have a tremendous way with words and attitude - I am lifted.
Thank you for sharing.
Rick
Dear Sean,
I've never written in before but your article has touched me deeply. We are trying to carry on pre mm, to keep life as normal as we can. But there is a huge cost, so much goes unsaid as we try to protect each other and our kids. The truth is that we are both afraid, at different times and to different degrees. My husband keeps reminding me that this mm journey is a marathon, not a sprint and there will bumps along the way. I wish I was half as smart as your "older, wiser self". I believe that newly diagnosed families strongly need to hear your words, and families who are well into their journey, need to be reminded. It is so easy to become paralyzed by our fear, leaving us very vulnerable. We must never forget the progress that has been made and more importantly believe that "things" will be ok.
Thank you
Wow, dude. That was splendid! What a framework for a book, frankly. I may just get started on it.
And you are right. I've been 18 months since diagnosis, and it's true: life goes on. We change, adjust, and make it work as best we can, don't we?
Thanks for the inspiration! I hope you don't mind that I will be sharing the link to this.
Aloha Sean,
I don't know how you got my exact same circumstances!!!??? The only difference is my two adopted children are boys from Cambodia! After 4 months of being diagnosed I have gone through all of the same fears, concerns, thoughts, and some of the experiences.
I will try really hard to keep your experienced advice in the front of my mind. This is exactly the type of advice I am desperately searching for.
Please keep writing.
Thank-you!
Tom
Thanks Sean, for the letter to 'yourself' that you have shared with all of us. I am now in the fourth year since diagnosis too, and am so thankful for all the help to get back to my new normal life! Happy Thanksgiving from Canada to you and your family and to all the readers and staff at the Beacon!
Hi Sean!
Thanks for the encouragement. I will share this with my husband and pray that your "older wiser words" will encourage my husband who is in the early stages of starting treatment for mm. Thank you for your positive attitude!
What wonderful advice you have given your younger self and all of us. We are now just past the 5 year point in my dear husband's journey with MM. At only 5 years into a late life marriage, we got the news of Bill's illness. Having availed ourselves of all the latest info on treatments, life expectancy, etc., we were prepared for a short battle - Bill was 73 at the time of diagnosis.
Although he was offered the option, at his point in life we decided against transplant. We wanted to enjoy together whatever time we could have - and we have been happy with our decision. Yes, the Revlimid treatment can be daunting, but how wonderful to have this choice! We travel in our motor home, enjoy our friends and family and one another, and continue to love and laugh together (important!!!). Together we have seen the birth of new grandchildren and even great-grandchildren. We just celebrated our tenth wedding anniversary, and even on the "down days" are grateful for our time together. Keep writing, and keep the faith!
Sean, this was beautifully written and will be an inspiration to those who will have the opportunity to read your words. Thank you for the kind things you wrote about those of us who worried and cared right along with you. I knew you were a special person, but you have surly instilled that status into the hearts and minds of all who read this article. God bless you! Jamille
Sean, This is a wonderful message you have created for the newbies who fear the worst... fear can be one of the greatest enemies of managing this disease. And you have grown so much over these past four years... my relative was diagnosed about the same time you were. It has, and continues to be, one of the most intense journeys of awareness I have ever been on. Thanks for this letter.
Hi Sean,
Fantastic message, I hope a lot of newly diagnosed MM patients read it. Being diagnosed with MM is scary but life is all about change and accepting it and as time goes by I get a little less scared. I am no longer employed but rather view myself as working to get well (although a holiday every now & then would be nice) and am grateful that I can still enjoy life.
Your letter made me wish that my husband had something to forwarn of everything he has gone through. In 2002, he was diagnosed with Multiple Myeloma. Our world crashed but we started picking up the pieces. He had two stem cell transplants. One in January of 2003 and the other one in April 2003. We have had many ups and downs. He went into "remission" for 4 years. In 2007, it came back. We have been fighting it on and off since. I say we because it is a we fight. I have been there with him every minute I can, hoping it won't be the last. He's had a hard time giving up a lot of his outdoor activities because of the damage he has. I'm going to show him your letter so he understands he isn't alone in his feelings of lossing everything. He is still fighting MM at 10 1/2 years. The biggest advice I can ever give a MM patient is to fight...fight for your life. Remain stubborn. I also tell my husband that's why he is still alive, he's too stubborn to die. And he is thank goodness. My GOD bless all of you out there and never ever give up.
Hello, My husband Alex was diagnosed at the age of 45 2 years ago. It has been such a difficult battle. He had a translpant last year at City of Hope. Then in late march he relapsed. The Revlamid and Valcade have stopped working and we just began a new treatment last week called Doxil-Decadron. We are not giving up. He is a fighter and very stubborn as well. Thank you for sharing your experiences with us. I hope that people who are new to this decease can learn to have faith and know that we have to keep moving forward. Good luck to you all and God bless.
@Pat Pendleton: Nice to hear from you, Pat! Thank you for sharing your wisdom and perspective with us every month. How 'bout we get some crazy glue and make those cracks disappear? Best wishes as you move forward with MM.
@Rick Adamson: Thank you, Rick, for sharing your kind words. I wish you and Kate great success in treatment as you approach your 2nd anniversary of diagnosis. I'm not sure that misery loves company and I wouldn't wish MM on anyone, but it is comforting to connect with folks that understand what we're going through. Thank you, again.
@Wife101: Your words have touched me, as well. Thank you. If we don't stand vigil, MM can take everything away from us, not just our health. While the fear is certainly real, education, connection, and unfortunately, experience, can help us to put our fears into proper perspective. I am purposeful about not letting MM take away any more of my focus on the beautiful things of this life, than is necessary. Not an easy task sometimes! The marathon analogy is quite appropriate; some days I have to watch my feet progress one painful step at a time, other days I can pay attention to the scenery. Keep in touch and I wish you the best on your family's journey.
@Snip: Thank you, sir! I get the feeling that you are meeting MM head-on and not taking any prisoners! All the best to you!
@Thomas Shell: Cambodia! Wonderful! There are times when I might not have the get-up-and-go to face yet another day of MM trials, but when I think about doing everything I can to help Katie and Lizzie's daddy get better, I'd go through anything. Our kids will learn great life lessons through our MM journeys. You know what I'm talking about. Courage, friend. My thoughts and prayers will be with you.
@nancy shamanna: Happy Thanksgiving, neighbor to the north! We have much to be thankful for, don't we? Always good to hear from you! Four years is more than I thought I would have when I first me MM. You game for another 20 or 30?
@Mrsgroovy83: Love your name! Courage and peace to you all as you begin the MM journey. It is so hard in the beginning. So much to learn, big changes as you adapt to treatment, the emotional roller coasters. You can do this! Take things a day at a time, a minute at a time if you have to. Almost everyone finds a strength deep down inside them that they would have never known they had until presented with a challenge such as MM. Be well and please keep in touch.
@Karen Borden: Your note makes me tear up! I can feel the 'love' that you and Bill have for each other. Thanks for the advice to keep the faith, to keep laughing and to keep loving - I will do my best! Travel safely; I wish you many more miles together!
@Jamille: Where would I be without you, Debbie, Nikki, Eddy, Ryan, Stephanie, Judy, Holly, Theresa, Gretta, Kimberly, Ben - all of you RNs and staff that have put up with me for three years of weekly infusions? You make what could be a daunting weekly task, a very pleasant experience. Thank you for making me feel at home!
@Sandy Banks: Thank you for your long time support and encouragement. I appreciate it more than you know.
@LibbyC: Thank you! I wish that we could take a vacation from MM! I pray that you continue to enjoy life for many years. Here's to stamping out the fear in our lives and replacing it with some joy!
@Kathy: You are so right when you say that it is a 'we' fight. I know that I couldn't fight this alone. I will take your message to heart to be 'stubborn' in my fight. I wish you much success as you move forward. Your husband is NOT alone. You are not alone. Knowing that you all have faced the ups and downs of 10+ years with MM gives me hope. Thank you and please keep in touch. Blessings to you, too!
@Claudia C: I wish you and Alex great success with his Doxil-Dex treatment regimen. This is such a complicated disease; I am grateful that there are different options out there to investigate. I will pray for your fight and your continued stubbornness!
This is great! I could not agree with you more.
I have been diagnosed w stage 2-3 MM January 2010, at age 60.
2-3 because I did not have some of the symptoms such as hypercalcemia.
I have decided not to take the stem cell transplant.
Doing Velcade-RevlLimid Therapy ( had to drop dexamethasone due to AVN of the hip - had hip replacement in May 2012.)
I feel great! I treat this as a wake-up call to put myself on my daily list!!! My husband has been a great support and at times, I do things just to support him. He attends a support group for husbands with wives who have cancer. He is extremely happy about this group. To all caregivers I want to say 'please, take care of yourself so you can take care of us!'
I tell my friends that 'people drop dead of a heart attack, etc. on the spot. We are given a chance to make a bucket list!!! '
Breathing deeply, meditating, eating right, exercising....and being grateful for every day!
I am 71 and diagnosed a few months ago. Discovered in a blood test as MGUS, was sent to oncologist, had xrays of bones, nothing showed, had bone marrow biopsy, I have smoldering by my cancer is the more aggressive kind. Dr. wants me to have the stem cells removed and saved for later transplant. I'm so tired all the time I'm always falling asleep. Have high blood pressure, poss.diabetes (find out at dr. office tomorrow), my teeth are falling apart & I'm in terrible tooth pain, no dental coverage of course. At my age, from what I read about the transplant & complications, I'm not sure I want to continue with any treatment. I've lived a good long life. What quality of life will I have with chemo and transplants--I only have Medicare, no supplemental, so running up bills I'll never be able to pay. To do the stem cell removal, I'll have to travel 6 hrs to the University hospital, no one does it where I live. Has anyone decided or known someone who decided to just stop it all and let nature take it's course? From things I've read, all these treatments at my age will only buy me about 3 yrs. and probably will cause heart problems, etc. I can see fighting it if I was younger, but what is the point at my age? Anyone been through making this decision who can help? What kind of pain can I expect? Thanks for any help.
Hi Judy,
I don't think you need to be quite as pessimistic as it seems that you are.
First of all, you say that your diagnosis is smoldering myeloma, so you almost certainly have a longer life expectancy (even without treatment) than just 3 years.
Second, stem cell transplants are not a required part of treating myeloma. If you don't want to have one at the point when it seems like a reasonable treatment option, you can make the decision then. Right now, all your doctor is suggesting is that you have your stem cells harvested for possible later use. The harvesting process is not really much of a physical challenge.
Third, there may be ways to get your condition treated that require much less expense than you're expecting. For example, there is a clinical trial currently being done by the National Cancer Institute,
http://clinicaltrials.gov/ct2/show/NCT01572480
that will provide treatment, testing, and even stem cell harvesting free of charge to patients exactly like you (high-risk smoldering myeloma patients). The trial is testing a combination treatment which might delay for quite a long time the onset of active multiple myeloma.
Why don't you contact the people running the trial to get more information and see if you're eligible?
(I should add that actively treating smoldering myeloma is not yet a generally recommended approach to the condition. The current recommendation is to just "watch and wait." But one of the reasons this trial is being done is because there is evidence that actively treating patients with high-risk smoldering myeloma can improve their long-term survival.)
@Judy – I am so sorry to learn of what you are going through. Thank you for sharing your story with us.
As an upfront disclosure, I make it a point to not offer clinical medical advice because I am not qualified to do so. I can only relate and report my personal experiences and perspectives of battling myeloma, for whatever they are worth.
You may feel like it, but you are NOT alone.
Please understand this. With the amount of pain that you are in (tooth and otherwise), with a very scary, relatively recent diagnosis, with the extreme fatigue that you are enduring, with financial matters concerning you, and with whatever other life issues you are facing, it is very reasonable and expected that you are overwhelmed. I should probably write OVERWHELMED!
Please forgive me, but you sound defeated. Judy, it is still early in ogame, you might find some surprising ways to feel better about your situation.
You have MGUS, a precursor to MM, but by comparison, you don’t have the devastating bone problems, kidney difficulties and some of the other significant MM problems that I and some others were challenged with. That’s a good thing! I am not belittling your situation at all. Really! Some physicians don't even treat MGUS actively and prefer a watch-and-wait scenario, as TerryH suggests.
I am encouraged to see that you are reaching out for information and for help. Don’t give up! There may well be good options for you.
That being said, I have learned that we all bring different temperaments, different physical/emotional/mental strengths and weaknesses, varying means of support, financial and otherwise, and different physical complaints to the examination table.
Myeloma is a confusing, complicated disease to tackle. There is no one-size-fits-all solution. Various schools of thought drive the protocols by which patients are treated.
And if I may say so, 71 is not old! Don’t throw in the towel just yet. You may be feeling grossly unwell right now, but let’s keep looking for answers.
If I were in your shoes, I would try to recognize and do the following:
(1) I would be honest with myself and say that I need help. You can’t do this alone. Come to grips with the fact that your feelings of fear and being overwhelmed are completely normal. The very fact that you’ve begun your research is truly a good step, Judy.
2) There are people out there willing to help you navigate this battle even as myeloma is crashing at the gates. You might not meet them at first pass, but keep digging. The connections are there. Don’t give up.
(3) If at all possible, seek out myeloma ‘specialists’- for up-to-date information and for treatment. This is in no way a slight to oncologists / hematologists that don’t have significant MM experience. You want commit to a medical team that is steeped in treating multiple myeloma (MM). It can be a single, well-connected practitioner or a large myeloma clinic.
(4) It is well worth the time and up-front effort to educate yourself about MM from reputable sources. By doing so, you will become a more valuable captain of your treatment team. It may be hard to see yourself in that role, but that is the role that you will assume.
(5) Call the International Myeloma Foundation’s toll-free hotline at 800) 452-2873 and see if they can offer you some sound advice on how to proceed. In fact, I called them this morning to talk about what they do. Call them!
(6) I would also visit the IMF’s website at http://www.myeloma.org and the Myeloma Beacon at http://www.myleomabeacon.com (you’ve already done that!) for solid information. Look at the links on those websites to see other trusted sources. Pay attention to Pat Killingsworth's websites and blogs.
(7) Keep asking questions. If you don’t know the right questions (very common), be honest and tell the docs and others whom you encounter that you desire to be asking the pertinent questions. Ask them to help clear up any confusion, misgivings, fears, etc. that you might have.
(8) Unless you are in a patient category that makes transplant impossible (I hate that word!), perhaps you should get more information about stem cell collection. I had two autologous stem cell transplants (ASCTs), but it doesn’t mean that it is necessary for your treatment plan. Some folks venture that way, some don’t. That’s why getting trusted opinions based on your profile is important for you at this time.
(9) Be upfront about your financial situation. If people don’t know your need, they can’t help. There is no shame in being sick and fearing financial consequences of getting better. Many, MANY have been where your are.
(10) Tell your dentist about your worries. Call a bunch of dentists if you have to. Call a local or regional dental association or a social worker to get help. Until you can find some pain relief, moving forward is difficult to concentrate on.
BTW -I echo the suggestions that TerryH presents. Please take a look at them.
@TerryH - Thanks for your thoughts, suggestions, and concern for Judy. Be well.
My MM road is different than yours is, Judy. I am not qualified to answer your medical questions, but I can hope for you and pray for you and lead cheers for you and point you toward people that might be able to help you in masterful ways.
Don’t allow your feelings of defeat to drown you, Judy. Many of us have been in those rough waters and have moved forward. Take courage, shipmate, you can do this!