Pat’s Place: Don’t Forget To Be Joyful!
Boy, do I strike out on this one!
Yes, I thank God everyday for being alive. And last night I took our dog, Finnegan, out for a midnight walk down to the beach under a glorious full moon.
But truth be told, I get too caught up in all I have to do every day.
There are advantages and disadvantages to working from home. Yes, I can get up and write in the shorts and T-shirts I slept in last night if I’m too lazy to get dressed. Forget shaving. I can graze throughout the day, eating and drinking what I want and feel my body needs.
But it all isn’t rosy working from home. There’s always the “honey-do-list” tugging at me; clean this, fix that. I can’t blame my wife Pattie for that; I have my own arm’s length list of projects I want to complete before I leave in a short ten days for the modified autologous stem cell transplant I discussed in my April column. But I realize I need to slow down.
This column isn’t so much to give you advice. I’m writing this column as a reminder to me.
Pat, the next six or eight weeks are going to be hard – really, really hard.
Why do it? High-dose melphalan (Alkeran) is bad enough. But adding thalidomide (Thalomid), Velcade (bortezomib), and dexamethasone (Decadron) to the mix before, during, and after my recovery is guaranteed to add to the “fun.” Why endure the nausea, diarrhea, bone deep fatigue, and all the rest?
For the joy of life! The joy I’ll be able to feel on the other side. The joy of feeling my dog rest his head across my feet as I write. The joy I get from hearing from a reader, thanking me for helping them get through a bad day or similarly tough time. The joy of kissing my wife goodbye in the morning as she rushes out the door, heading to a job she hates to pay for the insurance that helps keep me alive. (OK, sometimes there’s some guilt, too.)
The joy of marveling at the fluorescent green sheen of the quarter-sized tree frog climbing our pool screen. The joy of watching wild horses graze on unspoiled Cumberland Island, a ten-minute boat ride across the Amelia River.
I’ve been reading about the history of the 17-mile long island that runs parallel to the border between Georgia and Florida. The Carnegie family built audacious mansions that used to dot the island. The ruins still stand, a monument to the days of steel barons and their excesses.
Rekindling my interest in history – Pattie and I were both history teachers in a past life – is something else I can look forward to “on the other side.” It brings me a joy that I lost for a time.
I love being productive. Helping others; feeling like I matter! I’m guessing most of us feel this way. At some point my body will give out and it will all be too hard. But until then, the joy of being alive makes the fight worthwhile.
Whether you are an experienced, late-stage patient like me, or were only recently diagnosed, it’s only natural to get caught up in the physical and emotional toll living with our cancer takes. But there is so much beauty around us; so many people that need us.
We all have a lot to live for. The trick is to find it, grab on, and not let go!
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Well said Pat! I really enjoy your columns and am looking forward to the next one. I wish you much success and a speedy recovery with your SCT.
Thanks for writing this, particuarly relevant to me as I leave tomorrow for Boston for my first autologous stem cell transplant after being diagnosed with smoldering myeloma just over a year ago.
Best of luck to you!
Hope all goes well. You have a big crowd cheering for you.
Thanks, Annette and good luck, Heather! Surprised that "Mr. Cynical" would write a column about "joy?" I love life more than words can express. Hate being sick; one reason its so hard for me to sign on for transplants. Know what the turning point for me was, Heather? Looking at it as chemo instead of a "transplant." Just a way for docs to administer more melphalan than they could, otherwise. My wife experienced debilitating side effects following her monthly mega doses of Taxol for her ovarian cancer 13 years ago. I watched her curled up on the couch in the fetal position for days at a time. But it worked! Hope yours (and mine) works, too!
Good luck to you Pat, we will all be thinking of you and saying prayers for a successful ASCT and speedy recovery!
Ron
I appreciate your support, Eric and Ron!
Thank you for the lovely column Mr. Killingsworth! Reminds us of all the joys of living we must keep our eyes and hearts open to. Wish all the very best for the upcoming transplant; and pray it turns out well for you and brings you many many many more days and years of joy with your family! God bless you!
Pat - Wishing you all the success in the world. You deserve a break from all the crappy things myeloma can bring to our lives.
After reading your last few columns, I have a question. I notice you see multiple doctors (in different states even) of different specialties. Have you always done so? Do you believe it is a good idea for MM patients to seek care from well known specialists, even if it means traveling far afield to reach them? I see only a local hematologist/oncologist, who manages my disease. He is now on the verge of retiring, and I am rethinking my treatment while still in remission. What is your opinion?
Again, my prayers are with you on your upcoming treatment.
Pat, your grit and determination are impressive, as well as your immense generosity in sharing your experiences and learnings with others. I am grateful to you for that!
I am sure you will walk strongly out at the other side of these treatments recovering rapidly for many more chapters in your life journey.
Best, Ian
Pat, Your moving essays and practical tips for still making the best of the battle against myeloma is a valuable contribution to all
MMers. Wish you the best of treatment and RESULTS. P.K. Seshadri
What a wonderful article on a life well worth living. You and your wife are in my prayers.
Thank you Pat for helping me and my husband. We have learned so much from you with your sharing of your life with MM. We too recently struggled with the decision to have another transplant. My husband chose to put off transplant and try more treatments after traveling to Texas for a third opinion. These kind of decisions are so difficult to make! Prayers to you and your family for a successful transplant from us here in Missouri. Looks like we'll be neighbors for a little while
My comment to Marcie (who sees a local oncologist only) is that I would never advise someone to do this. I think it is essential to see a myeloma specialist (someone at an academic center who does only or mostly myeloma). My arrangement is to see a local oncologist/hematologist who has a close relationship with a specialist at a myeloma center (Johns Hopkins in my case). I see the doctor at Hopkins about every 6 months, and my local doctor once a month. As for seeing multiple specialists, I am not sure how necessary that it is, but it also depends on what you are trying to sort out for your care.
Here's to smooth sailing (as smooth as can be) through that transplant, Pat!
I echo Victor. I have treated with my local hematologist oncologist for 10+ years and just this month saw a myeloma specialist in another state at a major medical institution. What a difference. I am planning on going there (out of state) every quarter as a backup to my local. They both have their role: at this point in the disease, I feel better knowing there is a specialist looking over my shoulder too.
Well said. We will miss you at our support group while you are gone but will be excited to hear all about the rigors you are going to face. Wishing you only the best!! Hugs
You've done a great job helping other mm'ers remember everything we have to live for. Hope these responses remind you that we're all pulling for you. I gave birth 3 times. Rest assured the two "events" have nothing in common except that the memory of the tough parts fade quickly. Smooth sailing and a quick recovery!
Thanks, everyone! I wanted to respond specifically to Marcie, who asked about seeing different specialists. Like most things in life its complicated. I know several awesome, well informed medical oncologists who treat a dozen or more myeloma patients at a time. But if your onc doesn't see a number of us, seeking counsel from a specialist is always a good idea. Ideally, they work together. Marcie, from what I have seen and experienced, I believe seeing a myeloma specialist extends life expectancy or overall survival (OS). This is a complex cancer. After a relapse or two, these docs are going on instinct and experience, not trial data. Looking around for a specialist now--while all is OK--is a great idea! I only refer to a number of different specialist because I cross paths with so many in my work. Besides, they don't agree, so the decision which direction to go is still up to me and my wife, Pattie. Not fair, but another argument for being a well informed patient. Best of luck and glad you're doing so well!
Linda, I love that! By the way, which is tougher: transplant or childbirth? You've experienced both?
Hi Pat, I just found this page and I appreciate your comments. I first heard of multiple myeloma on April 22, 2015, when I read the results of my blood work, that had been tested for the third time, and I looked up IgG kappa monoclonal immunoglobulin detected on the Internet. My doctor wasn't present to give me those results, or explain them, so I had to do my own research. A week later, I was sitting in his office listening to him say, "Multiple Myeloma. " Somehow, my research helped me as he confirmed the suspicion of the disease. I had already been told that I had a lesion on my spine. It is now June 13th, I am still having tests. I'm sure all of the tests you have gone through. Monday, I will have a bone marrow biopsy. The doctors still cannot pinpoint the cause of my pain, and I was very discouraged after my spine biopsy, because the lesion they found is 4 inches below the area that causes me so much pressure and now pain. I have been searching for the answer to why I have severe hip pain for several years. To date, nobody has been able to find the cause of my pain. I hope to find answers very soon. Whether I am diagnosed with multiple myeloma or not, I have a desire to learn more about this cancer, and I will do whatever I can to help in the efforts to find a cure. I'm glad that I found this page, and I look forward to learning more.
Pat, Wish you all the strength that is necessary to overcome an other transplant. Thank you for taking us on your journey. Best wishes for you and Patty.
Pat,
I was slow getting to this column of yours, but wanted to say that I absolutely love your expression of joy in life. Loved all the particular points, right down to the tree frog. Wishing you many happy returns to all that makes you joyful.
You are an inspiration to many. Thanks for sharing all the ups and downs!
Encouragement is always appreciated, Christel and Sharon! Tammy, here's hoping your diagnosis is "smoldering" or something else benign. My thoughts about your pain: Remembering I'm not a doctor, pain can travel and present itself inches or feet away from the cause. For example, a lesion on my iliac crest (upper hip) stung my groin. May I ask how doctors located your lesion? If it wasn't a MRI, could be another lesion. PET scan even better. Let us know what your BMB turns up. Good luck!
Another great article! Thank you, Pat, for sharing your strength and inspiring attitude! You are a beacon of hope to many. We'll be thinking of you throughout your upcoming SCT and hoping that all goes well for you soon so that you can get back to enjoying the joys of life. Best of luck!
Good luck in your upcoming ASCT. I hope everything goes well. After 7 years in CR after my first ASCT, my MM is coming back. Next Friday I am meeting with my MM specialist to discuss a clinical trial or a second transplant. He seems to be pushing towards a trial. I want another transplant. I have to find out his reasoning for choosing the clinical trial. I had a wonderful quality of life for seven years. I know a second transplant will give me only 40% of the first one, the quality of life is important to me. The trial would involve weekly IV's and the inherent side effects that limit activity. Am I being greedy by choosing one over the other? I will get more facts next week. I love life and want to experience it in the best way possible under my circumstances. Thank you for your inspiration and good luck.
LOVE, LOVE, LOVE your vivid and joyful description of your own joy of living. Yesterday, I was released from the hospital after having a port inserted. Because of my unclassified bleeding disorder, I spent the night at the hospital following the procedure and received units of fresh frozen plasma and platelets. The hospital staff was kind and skilled; however, because they had to keep such a close watch on me, I didn't sleep. As soon as my hubbie and doxie picked me up to bring me home, my fatigue was somewhat lifted and my spirits soared as I took in the sights of a beautiful day here in the Pacific Northwest. We are indeed blessed and fortunate to be able to enjoy our world outside of MM.
Thanks for the reminder, Pat. My thoughts and prayers go out to you as you prepare for your upcoming "chemo" treatment. You are paving the way for so many of us, and I appreciate your honest candor and very palpable courage. Make new friends as you leave for your treatment and continue to share your insights/knowledge whenever you can!
Thank you for your thoughts and best wishes. In answering you about my lesion, I first had an x-ray, which caused doctors to then have an MRI, and a CT. I have also had a full body bone scan and a full set of x-rays. When the spine biopsy was being done, I felt much pain to the right and down into my hip, and the nerve pain since that time has increased in my hip and thigh. I still have not seen the reports from any of those tests, except for the first x-rays, which also talked about carpal tunnel, degenerative disc disease, and osteoarthritis. At first, my doctor was going to send me to a rheumatologist, and even the neurosurgeon and the oncologist mentioned that. However, the repeated blood work and the lesion has them doing biopsies. I will let you know what I find out after this set of testing.
I'm praying for you and all who are posting. Thank you
Hello, Pat!
I will definitely be thinking of you as you go thru the next weeks of treatment and the transplant. You take good care.
Sylvia
Go for it Pat! Get better fast so we can read your columns.
Who has some hospital survival tips for Pat?
I'll kick it off, but it might be fun if a few readers can add some more:
1) Tease the nurses - it's fun and it breaks the monotony or them and for you.
2) Take a stack of pre-addressed and pre-stamped postcards so you can drop friends reassuring notes.
3) Aim to get out of that bed as much as possible - my dad always used to tell us "You have to keep out of bed, they're dangerous places, peopled die in their beds!" (Always told in a dramatic slow drawl, with a twinkle in his eye). Nurses try to keep you there 'cos it makes their wards look tidier!
4) Don't lie around feeling sorry for yourself - it achieves nothing. Spend precious thinking time recalling favourite old times and envisioning things you plan to do when you get out of there!
I remember reading about a POW who, each day, filled in time and escaped his confinement (in his head) by envisioning playing a round of golf on his favourite golf course. When he was finally released, he headed to the golf course and played a perfect round, even though he hadn't had a golf club in his hand for years. The mind is an amazing survival tool.
5) Keep a notepad and pen handy for jotting down the multitude of questions that occur to you, so you can have fun grilling the doc when the comes round to visit. (I used to have the doc come visit, often with a gaggle of bored interns and undergrads in tow. It was hilarious watching him flick the questions to the squirming students and getting a bit of interaction going with them was good for everyone).
6) Take a stack of books to read for when you surface enough to be able to hold a book and a thought. I found I could manage real light easy reading fairly soon as long as it didn't have multiple plots and time switches.
7) Try to compose a poem - bet you don't get beyond the first stanza before you're asleep!
8) See how many other patients you can make smile and aim to improve your daily score.
With all of those things to do, I'm sure the 6 weeks will just fly by and while you're busy you'll probably find your body does the hard yakka and gets you well.
All the very best Pat. We your readers want you back soon publishing your amusing, informative, honest and helpful blogs.
Best wishes from Australia, or in the Aussie vernacular "cooee cobber!"
Judith
I'll be thinking of you every day. Hope it goes as well as can be expected. Pretty soon you'll be on the other side of it, gaining strength and feeling great.
Thanks, Sandra Dave, I'm with you. Not sure where you came up with the "40%" number (I thought it was higher) and they are just stats. I have a friend who went five years and is on her way to at least another five after the second! I was a perfect candidate for my first (low cancer burden--0.1 M-spike and 1% plasma cells in my bone marrow--and my didn't work. Chances are a second would work for you. That gives you two, three or more years for researchers to work some of the "bugs" out of new options. My opinion: research is outstripping our doctor's ability to figure it all out. In three years? You won't even recognize whats going on! That said, no reason you couldn't try a trial, hopefully it works for a while, then transplant. Depends on the trial and how much you want to make your doctor happy!
So glad you're out of the hospital, Patty! Enjoy those NW vistas! Breathtaking
I'm looking forward to your next column. Until then, my thoughts and prayers will be with you and your family.
Pat,
What can I say that hasn't been said already to you? I wish you the best of luck in your upcoming procedures. Thanks for giving me an insight into your trials and tribulations. It gives me strength.
Larry from New York
I never acknowledged Judith's fun and useful list of things to do while waiting to recover from my SCT. And appreciate your kind thoughts, Mary and Larry!
Thanks Pat.
I get a lot of comfort, or maybe misery-loves-company, when reading history. People had it so much harder than today's people (first world, that is).
Life span of 50 was the norm 100 years ago. In parts of the world today, it's in the mid 40's.
Can you imagine having pain in your bones, horrible headaches, and then getting onto a covered wagon for the 10 hour ride into the city? Only to be greeted by a doctor who wanted to engage in bloodletting?
Things could be worse!
Pat
Thanks for your marvelous column. I have turned to it many times for encouragement and a fresh perspective that is always broader than the narrow obsessions having multiple myeloma frequently traps me in. You always remind me that we live in a beautiful world and all have blessings for which to be grateful.
I wish you the best of luck for success in your upcoming stem cell procedure, and in everything for the future.
Pat,
I appreciate your columns so very much.
A sentence in this one has encouraged me to ask you to speak to us in some future column about your wife. I want to know more about her as a person and as a caregiver. Sounds like she is making sacrifices and how is she managing with that.
I am a caregiver.
Thank you,
Molly
Wow, Stann. Guess anything better than that! As a history major and former teacher, I hear you; thought about what it might be like many times.
Thanks for the kind words Rob and Molly! Molly, I have written about my wife and caregiver, Pattie, many times. Not sure how you access it; maybe type "pattie killingsworth" into query bar? I have lamented many times how bad I feel for her. She's a born caregiver, but a relatively young woman in her early 50's she should have a life. If I could change it I would. I love her more than life itself. I would kid her about being worth more dead than alive, but she wouldn't think its funny. My advice: try and talk openly about everything, including sex. Or is he the type of guy that isn't comfortable openly discussing how he feels and ways to help make your life together better? Pattie is so shy, I can't get her to open up. I've suggested therapy (I think we all need it!) but so far, no luck. All of this is one reason I'm willing to try a "likely not to work very well" salvage transplant this summer: taking a risk to help me live significantly harder as I pass eight years. Best of luck to you, Molly. Good for you for asking!
Hi Pat, I've been reading your column for several months and enjoy it very much. It is very difficult for me to write to you as I recently lost my 44 year old son as well as myself diagnosed with Smoldering Myeloma this past May. I find the thought of what is ahead for you affects me as if you were my own brother or maybe son? I feel your positive attitude will bring you through this successfully and I will continue to include you and your wife in my prayers. My love and best to you. Marti
So sorry to hear that, Marti. Coincidence? Specialists I've spoken with say no proven genetic link; in other words, myeloma shouldn't run in families. One exception: possible shared environmental risks. But probably just an ironic coincidence. Its just a feeling, but sounds like you might be projecting a bit. Just because your son lost his battle doesn't mean you won't have better luck with yours. As you continue to grieve, the "good news" for you is that you are smoldering. I know smolderers that have remained that way since I was diagnosed eight years ago; some longer than that. By the time your myeloma becomes fully active--and you start basic treatment somewhere down the line--there may even be a cure for a lot of newly diagnosed patients. I understand you didn't ask me about any of this specifically, but wouldn't a "brother or son" be passing hopeful information like this along to you? Glad to help anyway I can. Best of luck to you!
Thank you for reminding about JOY. I feel like I'm a myeloma newbie. My bone marrow transplant was about 50 days ago and my wonderful doctor says I'm in remission from MM. I've felt dull, tired and confused about what to expect of my life.
Your article was just in time. I started to keep a journal of Joy, noting anything that makes me smile, accomplishments and support from other folks. It has helped enormously. I've gone from being bald to looking forward to my hair growing back. Thank you for helping me change my perspective.
Best wishes for the renewed health,
Jeri
Hi Pat, looks like I misled you. My son did not die of Multiple Myeloma. It was a tragic totally unecessary death. My faith sustains me as I hope your's does you. Thank you so much for your encouraging words to me. I will be 77 years old next month and have had many years of superior good health. I have been very fortunate and feel quite able to accept whatever the future holds. My heart and my prayers go out to all the younger ailing people. May I enjoy your wonderful columns for many years to come.
Marti
Wonderful, Jeri! Great idea! Marti, not sure "misled" is the right word; I simply misunderstood. Happening to me more and more these days. To be 77; good for you! Hope I make 65!
Dear Pat, 65 and more. Keep your will and positive attitude and make it a reality. Marti
Works for me! I'm sitting in a hotel room in Iowa City, alone on the 4th of July. It'll all be worth it if and when the transplant works...
Dear Pat, Thanks for letting me know where you are and what you are going through. You may be physically alone but many are spiritually with you and pulling for you. Your courage is an inspiration for all suffering with this insidious disease. Looking forward to updates on your condition as they become available and hoping and praying for positive outcome. Marti
Happy Belated 4th of July, Pat. Also, Happy Belated Canada Day .. July 1! Our two countries have a lot in common and it has been a nice summer long weekend. Hope that the next year brings you better health..best wishes for your transplant!
Thanks, Ladies! I'm on my way ...
Praying you are doing well and are on the road to recovery
Thanks, Alice!
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