Myeloma In Paradise: Planning
I am a planner.
I make my living crafting plans for long and complex projects with multiple unfolding and changing factors, and I really enjoy it. My clients say that I am pretty good at it.
I make all the plans for our family vacations. I can easily become obsessed for hours with comparing airline schedules versus prices versus available seats versus the quality of the airline. I can spend days comparing the smallest details of myriad vacation rental options.
I plan our family’s financial outlays and investments. I plan our activities. I even make most of our meal plans.
I have planned from scratch the layouts, interior designs, and (with my wife’s assistance) even all the finish and trim details of our last three houses and then got them built.
You get the picture. I like to have a plan.
So along comes this hassle called multiple myeloma. It wasn’t in the plans. We were living our lives in what we thought were the best ways we could and suddenly everything was different. Obviously, everybody with a major health event has a similar experience, but not everybody hears the words “incurable cancer” along with it.
For those of us who do, it throws a real wrench into our plans.
I, of course, started immediately making plans for my demise, which I could only assume was going to come at any minute despite what the doctors all said. In hindsight, this was one of my coping techniques, and it helped me through the initial shock of the diagnosis. My poor wife, who has long become accustomed to me making plans, could only stand back and delicately try to remind me that the doctors said this probably wasn’t going to happen overnight. But I had a plan.
Once this initial diagnosis phase passed, I came to realize that most of my previous plans – both before and after multiple myeloma – were not going to work out the way I thought. Maybe I needed to relax a bit and stop worrying about my plans. It was during this time that I decided I needed to start enjoying the journey a bit more and stop focusing so much on the destination.
Sounds like a good plan.
But for a planner like myself, even my relaxing and focusing on today needs a bit of a plan. I can’t just stop planning for the future; instead I am trying to accept the fact that I don’t really know what the future means for me. This makes things challenging all the time, in all kinds of little ways.
For example, just recently we have decided that we need to be looking for a new car. We aren’t really into cars that much, so we have always gone with practicality over enjoyment and comfort. Now, though, I have started having second thoughts; I’m wondering whether I would like something more comfortable even if it doesn’t get great mileage. Heck, I am even thinking that maybe we should choose a color we actually like instead of just taking what is cheap and easy. My wife, on the other hand, is planning for potentially more and longer trips to the doctor’s office in the future, and is therefore thinking maybe we should go for the high miles per gallon of a hybrid.
But we don’t even know if I will need more trips to the doctor during the life of this next car. In my current “maintenance therapy” mindset, where my disease is being held steady and I am feeling pretty healthy, I don’t think we need to worry about all these trips.
That is the trouble with making plans for multiple myeloma. This stupid disease doesn’t always read the plan.
The car is just one small example of this conundrum. There is of course the constant give and take of finances we have to face. Should we spend it now and have fun, or should we save it for our future? Even the grind of my treatment has this dilemma. Should I keep going on maintenance therapy and suffer the effects, or should I quit the drugs and enjoy whatever time I have left?
It’s just too hard to make a plan when you don’t know what the future holds.
To me, the lesson in all this is that I need to quit planning so much and just accept what I have today.
As John Lennon is quoted as saying, “Life is what happens while you’re busy making other plans.”
I am going to try and remember that!
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 .
Tom - Interesting article as what you have written parallels me and my life. I used to be an big planner from a financial aspect to family vacations. Except for a monthly budget, I gave all my financial planning to a financial planner, just don't have time for that anymore. I don't even follow the stock market. I do still plan vacations, and actually changed up the vacations. We used to visit the same place every year, it was a great place for vacation, but after diagnosis it was time for a change. Before diagnosis I didn't like flying, and rarely flew on a plane. After diagnosis I have flown to Grand Cayman, Jamaica, California, Las Vegas. A diagnosis of multiple myeloma changes your life in ways you would have never thought. My saying is I didn't start living until I was told I was I was dying. Multiple Myeloma has removed all aspects of fear from my life.
I also parallel what you stated about planning your demise. Right after diagnosis I converted my life insurance from term policies to whole life, that stung the pocket book, but was needed. I updated my will...first and foremost I had to make sure my family was taken care of.
I used to be a very tight with money, now I spend money freely. I am enjoying life while I can.
It's nice to know that there is someone out there that parallels my thoughts. Wishing you the best of health!
Tim
What an interesting article. Thank you for sharing. I have learned one important thing with multiple myeloma: No plans without travel insurance. We had a trip to Vegas, and 2 days before I was hospitalized. And we had a trip to Florida; that week I was notified that I came out of remission.
Thank you for your column Tom. I needed to read that. Right after diagnosis I came home and labeled every photograph in the house, cleaned closets, made lists of who gets what trinket when I go, sold things I didn't want or need so someone else wouldn't have to do it ... another planner.
Not only a planner, but a saver. Same as you Tom. Buy the Corolla instead of the Camry. Clip coupons.
But now, if there's a concert we want to go to, we go. If we want to go out to eat, we do it.
And when you think about it, maybe I'm lucky. Others in my family have not had warnings. Of course, we all know we're mortal. But a cancer diagnosis confirms it. And as you said Tom, it won't be tomorrow.
I have a very wise and kind oncologist who from the start has urged me to go and do things. Lucky about him too.
Wishing you all the best,
Joyce
Thank you for this column. Neither my husband nor I are great planners. We are trying to change that. Just received news yesterday that my prognosis may be changing as my newest relapse shows I am experiencing symptoms in my blood.
So we are trying to work together more and talk more, at least every 2 weeks, about plans, goals, etc. I am already buying travel insurance each time for plane rides. And we are traveling more, doing what we want to do now. For a couple, that will be part of the conversation too, besides what car, what travel.
Thanks for reaffirming the challenge of the myeloma journey. Carpe Diem
Maureen
I do like your sense of humor! To stop worrying about your plans sounds like a good plan, ha ha!
Well, I read your article while trying to mobilize stem cells for the second time, collect them and store them for a possible future need. The first time I did it my veins could not bear the stress and kept breaking. I had enough for one transplant however, and went through it in December 2012. It turned out that the second collection was not possible; this plan did not work. My doctor had told me that the second time there was only 50% chance of success, because the chemo used in the first transplant makes it harder to collect the cells, sometimes for good.
So...what is the point of planning? Yet we need to do it all the time, don’t we? Or else, getting up in the morning, we would spend hours stroking the cat! That would be nice!
If there's something I've learned, it is never stop planning – even those small events like the concert in the park, a day at the shore, or dinner with friends. Sometimes multiple myeloma gets in the way and you don't end up doing what you planned, but it's something to look forward to anyway.
And never forget to get the travel insurance! It's uncanny how that's often when multiple myeloma rears its ugly head for me! 18 months since diagnosis and with a postponed Alaska trip last year (stem cell transplant) and canceled trip to Spain (radiation instead for a plasmacytoma), I never stop dreaming and planning to keep my spirits up.