Myeloma In Paradise: Carpe Diem
Do you ever wonder if you’re getting all you can get out of life? As multiple myeloma patients, this question is both timely and important to our ability to cope with this disease.
As I mentioned in my first column last month, I am a 51-year-old man who was diagnosed with early-stage multiple myeloma just over two years ago.
My experience was a little atypical in that I didn’t have any bone lesions or other signs of cancer prior to my diagnosis. Instead, I had a recurring and somewhat regular bout of unexplained colitis.
After my family doctor and every internal specialist imaginable had thrown up their hands, I was lucky enough to have a physician as a family friend who encouraged me to continue the hunt. She ordered every imaginable blood test and finally came across the one that sent me to an oncologist, who eventually uttered those heart dropping words that start with “I’m sorry to have to tell you ...”
How could this be possible? Other than occasional intestinal problems, I was healthy and strong, the father of two pre-teen boys, and the owner and sole employee of two businesses.
The bottom line was I just didn’t have the time for this problem.
My wife and I owned a freshly planted six-acre fruit tree farm (one of my businesses) in our home town of Waialua, Hawaii. We were also the proud owners of a way-too-big mortgage to pay for our farm. The only way to keep our heads above water was to keep my other business bringing in the bacon, as our farm was a good decade away from producing much money. My wife works full time as an administrator for our local high school, but as any teacher will tell you, her income helped, but it couldn’t come close to covering our large mortgage payment.
It turns out we were hard into the “rat race,” and that was quite a surprise. You see, we always professed to live by the mantra of “Carpe Diem,” or “Seize the Day.” For anybody unfamiliar with the expression, it simply means to live each day as if it were your last.
We came around to this attitude when we quit our careers and the pursuit of the “golden ring” in the mid 90’s, sold everything we owned, and went backpacking around the world for four years.
Upon our return home, we were very surprised to find all of our friends and family still doing the exact same things they had been doing four years before. We vowed never to fall back into this trap. Yet 14 short years later, we had somehow managed to get ourselves right back on that same hamster wheel.
As most of you reading this column can attest, a sure way to take a hard look at your personal hamster wheel is to be told you have a terminal disease.
Like most folks who are diagnosed with multiple myeloma, I first went into shock and immediately started the hard analysis of how I was going to provide for my family.
As a pragmatist, I took the approach that I was going to die from this disease, and that I needed to get myself and my family ready. It didn’t matter that the doctors said I could live for many years; all I heard was the word terminal. Who was going to take care of the farm? How were we going to pay the mortgage?
The answers didn’t come all at once. They didn’t arrive with a bolt of lightning. They took time and lots of talk with my wife, friends, and family.
For me, the hardest part was finding out how far I had gotten us back into the chase for the golden ring. We had the best of intentions. You see, housing in Hawaii is very expensive, and most parents here worry about how their children will be able to afford to live here.
My wife and I figured that our beautiful farm would provide home sites for both our boys when they were ready. All we had to do was hang on for about 15 years, and they could take over the mortgage.
Fifteen YEARS!!! I still can’t believe I said that!
Of course, these would be 15 years where my boys would grow from 11 to 26 years old, where paying that obscene mortgage would come before vacations, travel, hobbies, and college. Fifteen more years of working a job I was already growing bored with. Fifteen more years of putting the damn house before everything else in our lives.
Multiple myeloma changed all that.
Faced with the possibility that I wouldn’t be able to work in the near future, we made the VERY painful decision to sell our beloved farm. We moved to a small lot in a nearby community where we are in the process of building a much smaller and simpler house.
While building the house, we have been living on the lot in a trailer (same thing we did when we built the farmhouse and vowed not to do ever again!). It’s not horribly comfortable, but we are managing just fine.
The big change, though, is that without a huge mortgage payment to make, I don’t have to worry as much about my business or our money.
While our new place won’t be as nice as our old one, we are actually much happier with a lot less to take care of. Our boys won’t be able to build large family homes on this property, but we will still have room for them if they want. Somehow, they will have to make it on their own; just like their mom and me!
Most importantly, I am now able to spend more time with my boys dirt biking, hunting, surfing, and fishing, and less time working on the farm’s perpetually leaking irrigation system and explosive weeds. Instead of giving our money to the bank, we took a family trip to Alaska. For us this is truly Carpe Diem!
Just making the decision to lighten our burden (before we actually sold the place) noticeably helped my health.
The effect of stress on our ability to heal is very real. As I started chemotherapy, the knowledge that I was off my hamster wheel helped me immensely to relax and accept what was happening to me physically.
Carpe diem is not easy to live by in our society, where achievement is measured in material items rather than personal happiness.
I encourage you to evaluate your life to see if you can slow down your personal hamster wheel. They come in all shapes — not all of them are financial. Just evaluate your week and see if your energy is going towards making you happy. If not, make the changes now — not later. Our days are all numbered; some of us just know where we are in line.
Life is precious and short; use what you have left to make yourself and those around you happy!
Aloha and good healing!
Tom Shell is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Great column and lots of food for thought. We seem to have parallel lives a bit! I was diagnosed in 2011. I am now 52 with a wife and two sons about the ages of your sons. Your advice is excellent. I cherish carving out quality moments with my kids and enjoy coaching them both in Little League. I have seen a lot of the world and nothing beats being home, in the actual and metaphorical sense, with those I love. Aloha from the Garden State! Terry L.
Aloha Terry,
Thank you for your kind comment. I have been blessed lately to discover how much I enjoy spending time with my family. I have been able to really appreciate the small moments with my boys, such as your coaching them in Little League, that are so incredibly fleeting. We will never get those moments back.
Sorry about your MM, but congratulations on your self discovery! Amazing that our situations are so parallel. I decided to write for the Beacon exactly because I figured there are lots of us in the same boat. Hang in there!
Aloha
Tom
Thanks Tom. This is great advice. I'm 52, 3 years into myeloma, and struggling with this very issue.
Beautiful and healthy way to look at things Tom. You're so right in spending quality time with your boys. It will be treasured by them now and in the future. No money in the world can make up for unconditional love and real attention. Hope you will survive for a long time to come.
I started a farm in Wisconsin seven years ago. We emigrated at that time from the Netherlands to the USA because of my husband's job. Two years ago, at age 56, I was diagnosed with mm. Luckily my 4 kids our older. My youngest son took over my farm, because I had to give all my energy to 7 cycles of 3 way treatments in total and a transplant.
Keep up living to the full. I agree with you, we have to learn to let go. Stay safe.
Tom, I think you are wise to pace yourself and not take on too much beyond looking after yourself and your young family. Hope the new house works out very well, and enjoy the extra time spent with the kids too. My husband spent a lot of time with us as a family and I think that helped a lot in having well adjusted adult children too! Best wishes to you all.
Hi Tom,
Great article, it is important to seize the day with or without MM. Avail of every opportunity that comes your way is my philosophy. I'm 73 and in remission for 4 years now. I try to turn every vacation into an adventure, sometimes against my Consultant's advice, as I aim to keep going and going. We all need someone to love, some thing to look forward to, and something to do. Like you, we that have all three are blessed.
I relate to every word. I too farm{ed}. Cattle in central Kentucky on my brothers farm. Not for long. Its easy to get in over your head fast. I saw farming as a way to supplement retirement. Myeloma plans have changed that. I moved off the farm but have a ton of equipment to liquidate. Perhaps I could give a tractor to my brother since his burned up last week making hay. Now that farming is over and I'm officially unemployed {may be able to return after treatment}, and the weather in Kentucky is less to my liking but is home, we are investigated a home further south in anticipating our retirement. We are 54, so if I don't get disabled, and I wont, we aren't done working. She has a good job on that hamster wheel. If there is a silver lining, now is a great time to sell cattle, just ask Uncle Sam next year.
Just a word on spending time with your children when they are young. If given the chance to make a choice, always choose to spend as much time with them as you possible. It is important to both parents and children. That time can never be replaced.
Love this line, Tom: "As most of you reading this column can attest, a sure way to take a hard look at your personal hamster wheel is to be told you have a terminal disease." True that!
Tom, I am 54, and just diagnosed 6 months ago, so the journey begins. Your story is inspirational as I make some important life decisions. I have often heard over the years that no one ever said in their final moments, "Gee, I wish I had spent more time at the office".
Thomas
A wise man once said:
Never be anxious about the next day, for the next day will have its own anxieties. Each day has enough of its own troubles. (Matt 6:34)
Since being diagnosed with MM 3 plus years ago, this advice has served me especially well. My wife and myself were always planning for early retirement as soon as our kids finished their education. Both of us entered retirement at 53 years old. Many thought we were nuts because we were sacrificing our prime earning years. However those 10 years of retirement before the MM diagnosis were great and also confirmed the above wise saying.
Nobody knows how many years we have, 70 or 80? Learning the secret of being content and happy each day is more important than leaving a inheritance for your children. I am sure they prefer your time and love now, each day, rather than it being spent fixing leaky pipes and controlling weeds for their future inheritance 15 years in the future.
A more literal translation of Horace's poetic phrase "Carpe diem" would be "enjoy the day" or "pluck the day [as it is ripe]" — i.e. to enjoy the moment.
Congratulations on winning the race to a happy and simpler life!
This is a beautifully written article. The sentiments are very touching and so true. I find myself contemplating some of the same issues after my recent diagnosis of MM.
I am in a job I dislike, not because of the work, but because of the owner of the company. I am a commission-based salesperson and have a flexible work schedule, which is ideal when one is ill. However, I am seriously considering retirement at 60, which is my next birthday in March. I am headed for stem cell transplant in September. Depending upon how my recovery goes, I will make a decision afterwards. My boss is an "ugly" person if you know what I mean. At this point in my life, I have no desire to subject myself to it. The nature of my business is one that can lend itself to working at home, which I can do if I feel well enough.
It's a lot to consider right now, but I think things will become clearer to me as I move through the process.
Thank you for your wonderful insight Tom. I think it has helped me.
Tom, I can relate. I am new, June 4th. I just went through a divorce, living beyond my means. I have 3 kids and now diagnosed with multiple myeloma. I will follow your advice and simplify my life. I miss my kids.
Aloha Tom,
Sounds like you are carrying a huge load emotionally Tom. Please don't try to carry all this alone. I have found the help of a good therapist to be invaluable in getting me over some of these hurdles. If you haven't already done so, please ask your doctor, friends, or anybody you trust to get a referral to a professional who has the training and experience to assist you during this incredibly difficult time. Its amazing the difference this can make.
Feel free to e-mail me at tomsbeacon@gmail.com if you would like to talk privately. I don't know much, but I know when to ask for help. Keep your chin up and remember that things will get better.
Aloha
Tom Shell
Aloha,
Ellen - I too had the exact same problem as a commissioned based salesperson with a boss who was seriously "ugly". It took me 15 years to figure out that all the money in the world wasn't worth being around her anymore. In my opinion, if it's possible (my situation was long before MM), run for the door. Bosses are like buses - there will be another one coming in about 10 minutes.
April, Bill, Eric, & Andrew - Thank you for the confirmations!!
Craig & Matt - Sounds like you are in similar situations to me. I know its a tough decision to make. Simplifying and downsizing has worked out well for me so far.
Thank you to all of you for your super nice comments. I am humbled that you took the time to read my article.
Aloha
Tom Shell
I can only concur. I was diagnosed in 2012 (aged 39, with 3 small children). At the time I was just about to buy a new hamster wheel, so I was "lucky", I guess, that I was able to take stock, and in the end the purchase, the move, and the new challenge were all avoided.
The financial pressure is off me, but it's still a challenge to make a life that is rewarding and fulfilling, when the future is so foggy. For me, it is all about the children - our schools are about to finish for the summer and I have just one plan for the next few weeks: to hang out with my boys.
Alex
Aloha Alex,
Sorry to hear about your challenges. I too have made it my goal to survive long enough for my kids to be better prepared to handle my death - at least as young adults. For me it is easier as my kids are already 13 & 14, but you have youth on your side so you can make it also!
Amazing how we can look back on those attempts at "happiness" and see something we were at one point so willing to work so hard for as being completely unnecessary.
Good luck with your kids! Maybe our possibly shorter lives will turn out to actually be better than they might have been otherwise.
Aloha
Tom
Hi Tom,
I can't say a lot more than what others have already written in their comments. But I do want you to know that I appreciate this excellently written column.
I am surprised no one has mentioned the sentence from the column that most stood out to me. "Our days are all numbered; some of us just know where we are in line." I might have phrased the sentence a little differently, along the lines of "Our days are all numbered; some of just know a little better where we are in line." But I found the line to be particularly memorable.
I'm looking forward to hearing more about your myeloma journey.
Hi, what a wonderful article! I think that easing your financial worries has been an excellent decision, as the added stress could prove dangerous for your immune system. Thinking about our disease is stressful in itself, and at least you were able to remove other factors of worry.
To me, as an Italian, Hawaii sounds like such an exotic place -- a Garden of Eden! Instead, the darn myeloma hits everywhere!
I think your attitude is wonderful, pragmatic and positive, and I am sure that it will help you live many many years.
Aloha Cheryl and Annamaria,
Thank you both for your kind words. Cheryl, I liked that line as well. I just hope our numbers are far away! Annamaria, I think of Italy as a very exotic place. How can there be myeloma there when there is so much great food, wine, and spectacular history!? I think we can all say there is something special about our homes; it's up to us to identify it and enjoy the heck out of it.
Aloha
Tom
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