Myeloma In Paradise: A State of Confusion
I’m confused.
I am a 52-year old man who has always been driven by a sense of duty to my business and career. Earning enough money to support myself and/or my family has been one of the most important things in my life since I was about nine years old.
You see, I was one of those annoying kids who showed up at your door every couple of months trying to sell the latest in greeting cards, seeds, or some sort of candy to help pay my way to camp. After getting old enough to not be satisfied with the prizes offered by the greeting card companies, I graduated to paper routes and regular employment in my parents’ store.
I learned early on that the more I earned my own money, the more independence I had. This realization drove me to keep a job all through middle school, high school, and college. It led me to start my career in business as soon as possible after graduation. I like independence.
Now fast forward about 30 years.
While in the midst of chasing the “golden ring,” I was diagnosed with multiple myeloma. Despite a decidedly more relaxed attitude about making money at age 49, I was still pretty focused on the same thing as I was when I was nine years old.
At the time of my diagnosis, we had a huge mortgage and I was running two businesses with the hope of achieving financial independence sometime before I died quietly of old age sometime in my 90’s.
You get the picture.
Since getting my diagnosis, we have sold our giant mortgaged property and built a smaller place on a property we can afford without a struggle. I was able to shut down one business altogether and scaled back my primary business.
Other than fighting this disease (it is like a part-time job), I am left with enough time to pursue whatever my heart desires. Unfortunately, what my heart desires is lengthy travel to exotic destinations, a decent-size sailboat to explore the South Pacific, and all the money to do both. Here I am with the time but not the means. Before I had the means, but not the time.
This is where I get confused.
When I was first diagnosed with myeloma, I was of course told that it was, and continues to be, a terminal disease. At first I was fairly convinced that no matter what the doctors said, my time was short and I needed to get my affairs in order immediately.
Now that I have lived with the disease for almost three years, I have had time to come to grips with the fact that the end is probably not right around the corner. Indeed, I sometimes have to remind myself that I have a terminal condition at all. As each day goes by and I find myself more and more stable, I am torn between the urge to hurry up and pursue my desires (i.e., spend my money) or slip back into my old ways of focusing on earning more and more and more.
Each news release about myeloma brings word of progress with drugs that may lengthen the survivability of our condition. I am definitely not a fan of having to continue drug therapy indefinitely, but I am also not a big fan of dying. If these drugs are keeping the myeloma at bay, I am going to keep taking them.
As a devoted reader of the Beacon, I have followed the journey many have undertaken before me. While some have fallen pretty quickly, most patients have been able to keep fighting for many years.
So how long do I have?
We recently lost a very close friend to pancreatic cancer. She chose to give up some of her precious time so she could fight her disease harder instead of doing what she wanted to do. Unfortunately, that decision turned out to be a mistake. She never got to make her last trip.
I would love to spend some of our hard-earned savings on an extended trip to Italy, but is this the right thing to do? I am anxious to go on a bow hunting trip to Africa with my sons, but are we going to run out of money before l run out of time?
Conversely, an even worse outcome to me would be to put off some of these adventures only to have the myeloma rear its ugly head and cause me enough disability that I would no longer be able to pursue these trips.
One day, I am pouring through travel sites trying to figure out the best flights to get to Europe. The next day, a client calls me to discuss a new project and I wonder if I need to start emphasizing my business more. The day after that, I go back to wishing that I could just stop answering those calls right now.
It’s not just the money that keeps me answering the phone. It’s all those years selling candy, greeting cards, and newspapers that have formed me into an addicted businessman. I get a real kick out of being sought after for what I do. You don’t get as much respect when you are sitting at home in a chemo fog – no matter how good you are at it!
For now, I think I will take the middle road. I am getting over the impending doom phase of my diagnosis and I will live my life as normal as possible while incorporating what I have learned. I have been given the gift of recognizing how valuable my time actually is.
Since I am able, I will continue to work - but not as hard as before. Since I am able, I will continue to travel as much as I can - but without spending money like I have no tomorrow. I may miss an adventure towards the end of my life, but I will probably be able to avoid the poorhouse.
What have you decided?
Now, about that sailboat ...
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 .
Thanks, Tom, you are a very good writer. I very much enjoyed reading your journey. I was diagnosed with Multiple Myeloma in August of 2011. Came as a complete surprise and shock. I was 65 at the time and my husband and I had recently retired to enjoy our lives together. We had our oldest daughter die unexpectedly at the age of 41 of a malignant brain tumor in 2009. My diagnosis was in 2011, our second daughter was diagnosed with neuroendocrine cancer in 2012. It is also an incurable terminal cancer that began in the pancreas and metastasized to the liver and her prognosis is 3 to 5 years. She is in the battle of a lifetime. She is a single mother raising two boys on her own without any support or help from her ex-husband who is dying with liver cancer. Fortunately I am in a smoldering state and have had no treatments to date and my numbers are in a pretty normal stage right now. My husband and I will celebrate 50 years of marriage this year. We live in Spokane, WA and try to go to Tucson, AZ every winter in our fifth wheel. We are in AZ right now enjoying the lovely warm weather. I tend to get lots of illnesses with a compromised immune system, but overall I am fairly healthy and enjoy our lives living one day at a time. Keep your chin up and take each battle as it comes. Keep writing those excellent columns and sharing your journey and your heart with us. Thank you and God Bless You.
Aloha Cynthia,
Wow, you have really had more than your share of cancer experience. I will keep writing; you keep YOUR chin up. Your difficulties are an excellent reminder that there is always someone worse off than ourselves!
Good luck and safe travels!
Tom
Hi Tom,
My husband was diagnosed in 2011. A complete surprise. We had just moved to a new (old) house, which needed a huge amount of work. Also, we were retired with disposal income.
Well, we did all the things, everyone does, newly diagnosed, with an incurable illness. Told the kids, made the wills, paid off bills. Researched, researched, researched! Fixed the house to our needs.
We waited and waited, and made no travel plans, except to see family and DOCTORS!
One day, we decided, what the heck! We booked a trip to Europe, with friends for a support system, on a planned, accompanied trip.
Then, a trip to a Mexican resort. Mmm, that worked. Again to Europe!
My point, don't delay LIFE! Go on the trips. Enjoy.
Having been boat owners (sail and motor), think twice about being in the Pacific alone. We just went on a cruise, a safe way to travel the seas.
Blessings!
Our daughter was diagnosed in 2012 at age 32. Had induction therapy, a stem cell transplant, Revlimid maintenance, relapse followed by carfilzomib, which did not work, DCEP, which did not work, but put her in the hospital with C. diff and a blood infection. Now she will be starting a clinical trial. She is collecting partial disability and needs to work to keep health insurance and enough money so she can live independently. This disease is a full-time job in itself. As many have said to live and do things while you can, she cannot possibly do this. I mentioned something in the forum and someone made a comment about being bitter. I am not bitter, it's just that, after 3 years, I grieve still for what her life has become. She handles things better than I do. My heart breaks for her.
Cynthia, my heart breaks for you. Good luck on your journey through these ordeals you are facing.
HI Tom,
Your article hit home. I can completely relate to you. I even sold seed door to door as a 12 year old (still growing and selling seed, and I'm 52).
I started preparing to sell my business and downsize the farm when first diagnosed. It was on a level of sadness equal to thinking of not seeing my children graduate from high school. In this age where you are a bad dad if you don't see the birth of your child, it is not normal to admit these feelings towards a business. Ha.
But you and I identify ourselves in a large degree by our business. And I am proud of it. Providing for my family, hiring men who care for their families, talking with satisfied clients, buying supplies that support other businesses, solving challenges, etc. I'd do it the same way in my next life.
And I noticed that the people at the clinic who also have myeloma or other blood cancer and were retired or who had quit their jobs, were very depressed over their situation. I think a lot of it had to do with too much free time.
Seeing that, I decided to not sell our business. If we had sold it, I'd be depressed, as I'd use the down time to ponder my unfortunate situation. I could regret it when I do relapse, who knows. But, 5.5 years out, 2 transplants and much chemo, and I'm SO happy about keeping busy.
Let me play therapist, because I think I know you (from your well written article).
Would you be happy traveling knowing you had no business to go home to? No emails to check in the hotel lobby where you were traveling? No occasional business related phone calls?
How about guiding your business in a direction that was less stressful but more enjoyable, all the while "farming" out some of the details so that you could still manage while not feeling well? Or grooming somebody to help run things altogether if things got bad?
And scale back your travels to local and affordable venues?
A beach in Santa Cruz or Florida has the same kind of sand, ocean, and martinis as a beach in Tahiti. And you don't have to sit in a jet for 13 hours wondering if your luggage will arrive with you at the destination. Traveling is not relaxing!
This was a little tongue in cheek – hope nobody was offended!
Hi Tom,
Loved this article – my train of thought exactly. Do we do the bucket list while we can, or stretch it out for a few years? Who really knows.
I was diagnosed in September 2013 with no issues from this disease. Last year was full on with induction therapy then an auto transplant in May. I am now on thalidomide maintenance (in Australia). Before my diagnosis, I had been retired 4 years and was very happy to have taken early retirement from the police force. Now I am planning one year at a time.
We travel a lot in our motorhome and are away for three months at present. Then, another camping trip planned, then to your beautiful Hawaii in September for the second time. I don't plan to die this year – have too much to do. I think it's the best way to deal with the disease: keep busy, either on trips or, in your case, running your business.
Aloha from Oz.
Eric
Aloha,
Thank you all for the kind words. I am happy to have my article find a receptive audience.
Plm - Glad you got out of the doc's office and out exploring! Safe travels. I've sailed the Pacific a bit before, so I know what we're getting into if we do it. Mostly I think that one will stay a dream, or I'm going to have to find another wife!
TJ13 - Don't worry about whether or not other folks think you are bitter. You have every right to be grieving. Nobody has a right to judge you who hasn't walked in your shoes. I pray my children stay healthy forever! My sincere hopes and prayers are with you and your family.
Stann - You and I are definitely cut from the same cloth. Instead of selling my business and downsizing my farm, I downsized my business and sold my farm. Thanks for the great advice. I do need a little business in my life to be happy. I have tried not being busy and it doesn't work real well for me.
Darbs - Hope the camper park has been good to you. My wife and I spent a few months camping from Adelaide to the Cooke Peninsula many years ago and loved it. We don't have many campers here; you may want to buy a tent! Maybe traveling will keep us going indefinitely!
Aloha
Tom
Hi Tom
Enjoyed your article but am a little confused about a detail.
I am 64 and was diagnosed in 2011. Went through induction, VD-PACE and a transplant. I'm currently doing very well, but am on a VRD maintenance program because of my 17p gene deletion.
Like you, I am a lifelong entrepreneur. My last business was very successful, but very deadline intensive, with long work days and lots of stress. When sold, it paid out some decent money, but we are by no means wealthy. My wife and I are taking way more vacations, usually within the U.S. We live in Santa Cruz, so staying at home is not so bad either. I do part time consulting that I enjoy. Since I have no line responsibilities or decision making power, there is literally no stress. I believe that, for me, reducing stress is a big part of staying healthy.
My question is about your spending. Do you really want to spend all your money before you die? I am very concerned about leaving my wife with adequate resources. But what I'm taking from your article is that you don't have this concern. Did I miss something, or is your situation so otherwise very different from mine?
Thanks
Hi folks - Nobody seems to be concerned about travel insurance, which is difficult to organise in the UK and very expensive. I have decided to explore the many areas of this country we have not yet visited.
I find the uncertainty difficult to adjust to, and, as I am just starting a period off treatment, my thoughts stray to how long I will manage without drugs. I think of my myeloma on a daily basis.
I am attempting to do more, as I am retired 12 years now. My grandchildren are young, so I plan to hang in there and create good memories for them. I enjoy your columns, Tom, and really enjoy the Myeloma Beacon. Good wishes to all who read and write these articles,
Elizabeth from Scotland.
Hi Tom,
In 2007, one year after his first stem cell transplant, my husband and I went back to Sydney, Australia where we got married six years earlier. In 2008, four weeks after we got back from a carefree holiday in Italy (we live in Holland, so Italy is 'on our doorstep') the myeloma had become active again and another stem cell transplant followed, from which he recovered quite soon. We bought our first house with garden and continued travelling to many places throughout Europe and went to the US. We celebrate life but one day, to us quite unexpectedly, the myeloma ended it all. All those years, we never lived like his life could end from one day to another, but it did. Now I'm 'stuck' with a high mortgage but am so glad that we travelled while he was physically fit. Without meaning to sound doom and gloom, I'd say, if you can afford it, don't put things off and go for it! Take your kids to Africa, visit Italy and buy that boat to sail the seven seas. Africa, seeing the big 5, was still on my husband's list - I will definitely visit it one day in memory of him.
All the best,
Lia from the Netherlands
Tom, you really said everything I've been feeling in this column. I am 52, and its been almost 3.5 years since my diagnosis. My husband and I have been struggling with the "carpe diem" side vs. the "what if we blow it all now and I live 20 years" side. 3 years ago we didn't think we would be able to retire together. We still might not, but each year that goes by, gives me hope for that. We have been trying to travel more and do the stuff we want to do. But balance that with both of us still working. And the biggest issue for us, is deciding if/when/where to move and be able to get care from a MM specialist. Moving means moving away from our daughter, but possibly closer to our sons. Not moving may mean a shorter OS for me. We all face tough decisions. I hope you find a way to do it all!
Hi Tom, Now about that sailboat. I was diagnosed late in 2008 with MM, about a year before I was to leave with my brother on our sailboat to the South Pacific. Since I was then in the smoldering state (love that term) we sailed 2009-2010 in Mexico from Nov. to Mar., at which time I came home and my brother, with friends, took the boat to the South Pacific. I did their weather routing thru SSB which kept me part of the adventure. While cruising in Mexico I found a doctor in PV that set up my blood tests and I scanned and emailed the results back to my US doctor. While the South Pacific might be a stretch Mexico is certainly doable with MM, if you are in remission and your doctor agrees. I'd be glad to talk with you about this if you can give me a means to contact you. By the way I have the high risk version and am still in stringent complete remission. Don't give up your dream...you can make it happen! All the best, Steve
Hi Tom,
Great article I'm a 74 year old Irishman. My journey over the last 6 years has involved 8 months on kidney dialysis and then a stem cell transplant. 2 years ago, I did a road trip across the US - Vegas to Denver with my son.
Do what you can while you can is my motto.
I still have plans to travel so I'm downsizing from a 4-bedroom house to 2-bed apartment.
Thanks again.
Aloha,
I figured I wasn't the only one in this boat (pun intended). I'm really glad that many of you have been trying to enjoy your time to the fullest.
Lee May - You bring up a VERY good question. It's exactly the dilemma I was trying to address. I don't want to use up all my/our money, just the excess bits. I don't want to leave my wife a broke widow, but I also don't want to leave her so much money that the next guy can swoop in and live large on my sweat! Seriously, my wife and I are on the same page in that we both want to spend our money enjoying our lives instead of leaving a legacy. We want our children to have the satisfaction of earning their own living. When I go, my wife will have a home that is paid for, her own pension, a small savings account, and social security. If she needs more than that, she will have to earn it.
Elizabeth - Exploring your own country is a great idea in my opinion. Its cheaper, easier, and you already know the language! Enjoy your time off the drugs. We love the village of Oban. Maybe a wee dram of the 12 year old there??
Lia - Maybe we will see each other in Africa! I am thinking Namibia for our hunting adventure.
Sheri - We too are balancing work and play still. I don't see that ever ending. Finding the balance is the key and the HARD part.
Steve - As I mentioned above, my sailing adventure is likely to stay a dream unless I want to do it alone (I don't). I did sail in a race from Fiji to Vanuatu many years ago. I am convinced I could monitor my disease and get my medications while in the South Pacific, but more severe treatment would mean a flight back home. More likely is some trips around our own great Aloha state.
Mervyn - Glad you got to spend some time with your son. Who needs a 4 bedroom house anyway (other than if you have three kids at home)? I too am an Irishman by blood with roots in Limerick. Guess that's why I enjoy a pint of Guinness so very much!
Carpe Diem!!
I loved this column. As I read it, I thought "go for it, Tom!" Do what you want to do (including work, if that floats your boat – pun intended) and savor each day!
Get on a plane for Italy now!! I was diagnosed in January 2012. Since then, I've been to Europe twice, heading to Argentina, Brazil and Uruguay is 3 weeks, and a Caribbean Cruise in April. Live! Life is now, today. I'm 47 and I have fatigue and chemo brain, but I'm not dying and I love my life. Italy is amazing! And then go to Africa!
Coming to Italy, eh? Now, there is a good idea! Don’t worry about spending too much: we happen to have a lovely little B&B for you and your family in the beautiful countryside near Rome (special prices for MM patients only).
See, we found a good solution to your dilemma. We found the squaring of the circle!
You guys are awesome! We can't leave just today, but I think we are going to go to Italy in October. Looks like Africa will have to wait until next year.
Thank you!
Tom
Tom,
Great column as always, I totally agree while the others – go enjoy your trips, don't let the myeloma stop you, my myeloma team encourages me and my wife to do the same thing. In fact, my wife surprised me with a trip to New Orleans to see our beloved Buckeyes play Alabama in the Sugar Bowl. Great trip! My next check up lasted 2 hours because everyone wanted to hear about our trip.
If you're well enough, DO IT!!
Tom, you also brought up something that some of us probably have thought of, but have never articulated ... And that is leaving a spouse with more than enough money and knowing the next guy will be benefiting. I do not think about it often, but when business gets stressful, sometimes that thought does creep into my mind.
Now that my kids are almost out of the house, I don't dwell too much on my kids having a "new" dad someday. But that is something I do no relish and so do not think about too often.
That being said, I have let my kids know that it is OK and that I hope Mom does find a new guy if/when the time comes. But 5.5 years out from diagnosis and with things going exceptionally well, I haven't had those thoughts in awhile.
For the first year, I wouldn't buy new clothes because I figured it was a waste of money.
Thanks to scientists and capitalism, my life has been very positive for the last few years.
There was a surge in depression in AIDS patients back in the 90's.
After they had been diagnosed, many lived high on the hog and spent their retirement money, figuring they were going to die within 5 years. After 10 or so years, and the drug cocktails started working, they realized they were going to live a long time but were going to be broke!!
Hopefully we will all suffer the same fate!!
Aloha Stann,
I was actually talking in jest about leaving my wife too much money. She definitely won't have that problem when I pass on.
Once I am gone I would be very happy if my wife is able to live without any financial concerns and it doesn't bother me to think that she might share it with her next husband.
The reason it won't happen is because we are committed to living these days as fully as we can. In our case that includes travel that will eat up much of our reserves that would otherwise be left unspent when we die.
Your second comment is actually much more of a concern. I need to dampen our spending spree enough to be sure we don't go broke.
I sincerely hope I am still pondering this dilemma 10 years from now.
Aloha
Tom