Sean’s Burgundy Thread: Staying Connected To Yourself While Living With Myeloma
In last month’s Myeloma Beacon article, I shared how important it has been during my two year fight against multiple myeloma to stay firmly ‘connected’ to my at-large health care team consisting of family, friends, caregivers, physicians, and other medical professionals all acting in concert on my behalf.
The herculean efforts of so many people and organizations to help myeloma patients like me survive this rare cancer have been both humbling and gratifying. Though the campaign moves on slowly, we have witnessed incremental advances in treatment in the last several years. Without these dedicated people serving on the various fronts, the war against myeloma would be lost.
Having lived this remarkable journey in the belly of the beast, as they say, I have determined that it is critical for my own well-being to also enlist the help of another powerful advocate in this fight – ME!
Sounds simple, doesn’t it? You would think that it would be obvious that we would champion our own care–that we would maintain strict control over the path we take.
But battling myeloma as a patient is anything but easy. If left unchecked, the various stresses encountered can be debilitating both emotionally and physically. The depression, fear, pain, and uncertainty for many sufferers are all too real.
I sort of know what Alice must have felt like tumbling down that rabbit hole to Wonderland. At diagnosis, my life’s comfortable, predictable patterns were all of a sudden thrust into a surreal state of imbalance. I was compelled to learn an odd, new language of unfamiliar medical terms and concepts, and I was subjected to a continuing battery of expensive procedures, pokes, and prods.
I’ve always liked mathematics, but now my world is punctuated with numbers and scores, which have become significant bellwethers to my ability to stay alive.
In many ways, we myeloma patients can feel like we’ve lost control over our lives. It is as if myeloma is calling the shots and that everything in our day-to-day lives, no matter how small, is now filtered through myeloma-colored glasses. And the view isn’t all that great.
Now, I am not a myeloma expert. I only truly know the depth and breadth of my own experience. But sensing a more-than-formidable foe early on, I made a conscious choice to plant my flag, to take a stand and not let myeloma so easily have the upper hand with me. It's more than just positive thinking. It is a call to action.
Following are a few of the things that I have chosen to focus on daily to stay connected to myself in this helter-skelter world interrupted by myeloma.
1. I refuse to allow myeloma to do anything but change me for the better. No question that I hate myeloma, but even in the midst of incredible upheaval, I choose to use this experience to make me a stronger, more compassionate, more in-touch person.
2. Myeloma presents me with a real world opportunity to live my faith. I choose to quietly, but boldly walk my talk. The poignancy and power of this perspective has given me comfort and strength beyond measure. I want my children to see faith put into action.
3. Myeloma will not relegate me to a boring, colorless world. I will not let myeloma steal my passions. As difficult as life is physically, at times, I can still read and write; enjoy politics, food, beauty, and art; watch movies, surf the web, enjoy sports, talk to and interact with my friends around the world, go to church, play with my dogs, make and listen to music, use my imagination, and a million other things!
4. Until my last days, I will reach out to others. Many people have helped me in my time of need. There is no reason why I can’t diligently work to edify and uplift others.
5. I will combat myeloma with humor. As dark a place as the world can be sometimes, I will not let myeloma steal my joy or silence my laughter. It will not make me a bitter person.
6. I believe that myeloma will someday be defeated. I believe in a culture of hope and the possibility of a cure.
These concepts may not be what you would practice while dealing with myeloma. That’s certainly okay. It is your choice. Whatever you do, please don’t let myeloma totally define you. Celebrate the uniqueness that you bring to the world. Keep fighting, and stay connected!
Sean Murray
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Hi Sean, I couldn't agree with you more on "how" you are a choosing to live with myeloma! Dave and I are subscribing to very similar views and it is indeed quite liberating to not be held hostage! Nice article.
Best,
Lori
Dear Sean,
what you write is hard to live. My mind is occupied with myeloma and the overwhelming information about it. When you're 38 year old and have little children, it's hard to think not of the future every day. But anyway it's very good to read your thoughts. I will think about your positive attitude!!!
Thank you and best regards, Tom
Sean, you and Nick have an ability to make myeloma seem like an inconvenience, and frankly I am in awe of both of you. Tom's comment is very familiar to me, although I try to find a way to put it more into the background. When I talk to other cancer patients {myeloma, or any other cancer) it is the fear of it coming back, and the notice of any change in how you feel, that makes this more difficult to put aside. One common thread that I do see between you and Nick is that you are always active and busy on your job and myeloma mission. Finding time consuming activities and your excellent advise might make a good combo for success. More doing and less thinking is my nest focus, to be more like Sean and Nick.
There is one additional point which I add to your list:
7. Remember that you have a fatal disease which will eventually catch up with you. You can not afford to waste time being depressed, enjoy the people you are with, the world around you and the life you are leading.
Hi Sean-
Words for all multiple myeloma patients to live by! Thank you- Pat
Right on! Do NOT be afraid to live! Get busy living! Set some goals and then start reaching for them! (MM 2002, UAMS)
Thank you, one and all, for your insightful comments. I value every one of them.
Lori - I am well acquainted with your and Dave's journey at Riding the Waves. Loved your Caregiver articles - thank you! All my best! Let me know when you're back in LR. Love to meet you all.
Tom - Your words are very wise. My heart breaks for you. Any age for this mess is too young, let alone 38.
I was 49 two years ago at my diagnosis and had two daughters, ages 5 and 11. My friend Nick from Nick's Myeloma Blog (link in the right hand column here at The MB)was in his early 40s, almost your contemporary. And like you, I want nothing more than to be here for the kids. Teach them and learn from them and see them graduate and walk down the aisle - you know all-to-well what I mean.
Thinking and planning about the future is a good thing, a prudent thing to do. It is inevitable and I do it every day. I don't hide my head in the sand and am well aware of potential outcomes. I just don't want to have those thoughts weigh me down so heavily so that I can't pick myself up. You and I know that it's easier said than done.
As lay people, learning about MM and living with it is daunting and confusing. I look at it like eating an elephant - one bite at a time! Especially for a sometimes dullard like me! And sometimes I get really tired of elephant...
I know that my attitude is much like the tiny rudder of a mighty ship. One small change in direction of the rudder translates into mighty changes in the direction of the ship. Man, if I can just control my attitude and make good choices, maybe my trek through Myelomaville might be just a bit easier. Tom, hang in there & please keep in touch!
Gary! Nick and I are friends brought together by MM. He is a very accomplished, talented, intelligent guy whom has been a steady source of encouragement for me. We first met each other at UAMS in a stem cell transplant after-care suite, ran into each other a couple of times in Little Rock, but came to really know one another through his fantastic blog and my bugging him at it. I try to stay busy, but Nick is BUSY!!
I've been in CR for about a year or so and that 'coming back' thing is a biggie. not in the forefront of my thoughts, but they are in the there. Can it return? Yep. Is it going to? I hope not! Will I tackle it with gusto if it does? You know it! Is UAMS's aggressive Total Therapy approach the best way for me to go? I've staked my life on it. You're right, it's harder to be positive when you are really hurting, dazed and confused by this anything-but black and white disease. But I've always believed that that is the time to get tough. For me, busy is better than boring- even with chemo brain an and broken bones! All the best to you, Gary - please let me know how everything goes for you.
Pat: I'm already a card carrying member of the Pat and Pattie K. Fan Club. All you all MMers MUST read their blogs and Pat's MB articles. They will help you! Thanks for everything, Pat! YOU keep smiling!
Hi, John: Thanks for #7! I agree that you should not allow the darkest of thoughts overwhelm you in your battle. Get professional help to get through these feelings and to get on with life. And you're right, enjoy life as it finds you and work to make it better. Note that I didn't mention your words that MM is a fatal disease that will catch up with you. My head says, maybe you're right. But my heart quotes Winston Churchill whom said 'never, never, never, never give up'. Thanks, John. Hoping to hear from you for the next 20 years!
Ted: Right On, back at you!! UAMS since 2002 - I like it! Can I learn more about your story? Keep setting and reaching those goals!
Whew! Am I a windbag or what? I appreciate your thoughts without end. I learn so much from my fellow trekkers through Myelomaville. Thanks! Sean
Sean, thanks for this great article!! I can tell you will not go quietly into the night - but full speed with high beam headlights and horn blasting!! Stay well my friend.
Sean,
I like the line on elephant, really puts a smile on my face! I think elephant meat tastes tough and horrid, just like myeloma, ha ha! Windbag or not, I enjoy your rambling and wise words. Keep at it.
I just wanted to chime in as an old and blessed friend of this amazing man. He is the real deal people! This ugly disease just enhanced so many things about him that were already good and uplifting...I would like to think that his territory to share such gifts just increased. He defines grace...this side of heaven anyway...
Cass
Sean- you are an inspiration. The way you live your life is such an encouragement to me. I love reading your posts. -Phil
Sean,
Especially the comment about not letting this thing "steal our joy" resonates with me. One of the oncologists I see regularly started me on my journey with the words of encouragement - "whatever you do, Lydia, don't let this thing steal your joy!" I think of them often. I have to admit to a bit of trepidation at this stage. A lot of bloodwork being done right now to see how the 3 months of hiatus from the Velcade routine I was on has affected my MM - tentative appt for mid-November to discuss results and how to go forward from here. I do try to think always in "Foreward mode".
Thanks for all of your kind thoughts and feedback. We have to actively stay in the game, no matter what it throws at us. Might as well do it with some joy and passion. You all are the ones that inspire me. Great to hear from you, Phil!
At this moment, I'm receiving my 49th weekly Velcade infusion as part of my maintenance phase of the Total Therapy 4 treatment, (the Onc Nurses send their best!) and I feel good. 0.0 M-spike.
No matter which treatment path you've taken, and we know that there are several, I pray that you are doing well!