Pat's Place: Planning For Your New Life With Cancer – Creating A Life Plan And Budget
Three months after my initial multiple myeloma diagnosis in the spring of 2007, my oncologist at Mayo Clinic, Dr. Zeldenrust, looked me in eyes and said, “The average Stage II patient lives 43 months.”
That's less than four years. It was an accurate, honest answer at the time. I had pushed and prodded him to give me a prognosis. Like many patients, I needed some idea about how to plan for my now shortened future.
I was 51 years old. My wife, Pattie, and I were both full time realtors. We raised rescued sled dogs as a hobby, running “his and hers” dog sleds. I taught skiing. Pattie was a runner and taught fitness classes.
Now I had dozens of holes (lesions) in my bones. I could barely walk, let alone run or ski. And I was dying. What would I do with the short time I had left?
In a way, if your doctor says you have six months to live, that's easier. You take a cruise, say goodbye to friends and family, and get your will ready and affairs in order. Then you hope and pray there isn't too much pain in the end.
If you are diagnosed with an incurable, yet chronic illness like diabetes or coronary disease, you adjust your life style, take your medications, and work to live and extend your life the best you can.
But what about you and me? Here we sit in “no man's land.” We still need to try and make a living. There are tests, chemotherapy, and probably stem cell transplants in our futures. Hopefully you get better—at least for a while. Then what? Watch and wait? Hope and pray for a cure? Try to ignore the pain from those slowly healing “holes in your bones,” and pretend nothing ever happened?
Last week, I wrote a column titled “Having Multiple Myeloma Isn't Simple—It's Hard.” I promised to “help multiple myeloma patients better plan and organize their lives.” So, here we go.
A month after that fateful conversation with Dr. Zeldenrust, I found myself on a plane to Las Vegas for a long weekend getaway with Pattie.
I do some of my best thinking and planning on a plane. I'm not sure why. Maybe it's all of the possibilities and lack of media distractions. Anyway, on the way to Las Vegas, I removed a yellow legal pad from my bag and started several lists.
I broke my planning down into four parts: The big picture, short-term goals, long-term goals, and budgets. I was trying to create a comprehensive life plan. Where would we live? How much would it cost? What could we do to help make ends meet if I couldn't work?
I was trying to think outside of the box. Heck—cancer had destroyed the box! Did we need to sell our house or give it back to the bank? Should we consider re-locating to a less expensive area—or move closer to a multiple myeloma-friendly cancer center?
You need to start with a budget and work your way backward. Actually, you will most likely need more than one budget, since it will change as you plug in different projected income and expense figures.
Your decisions will ultimately be driven by what you own, how much you have been able to save, and how much your spouse or caregiver can contribute to the monthly expenses.
I was hoping to start working more with my fellow cancer patients—and working less. But could I afford it?
Since I was sitting on an airplane when I started the process, let's use an airline analogy. They tell you on the plane that if the cabin loses pressure you should put your oxygen mask on first. You can't help others if you are gasping for breath yourself! I couldn't start my new life helping other cancer patients without money and a means of support. So I started a budget, and we started to plan.
I took all of this very seriously. I started my budgeting on the flight out west. I fine-tuned things flying back. I wrote down all of my expenses on one page—monthly income on the other. Months of missed work were beginning to slow our real estate earnings. Some weeks, I couldn't help Pattie or work at all.
It soon became clear it would be difficult for me to meet my work-related and personal expenses. The expense side of the page was significantly higher than the income side—and my income was likely to keep sliding lower.
After battling a blood clot in my lungs and spending a week in the hospital a month later, I realized we couldn't afford to stay in our home. We also probably couldn't afford to live in the small town of St. Croix Falls, Wisconsin, which we loved. The high cost of real estate taxes, heat, and maintenance on our large, aging home—it was all too much. And Pattie needed a steady job with a regular paycheck.
We decided to move to Florida. Pattie found a job in the more stable health care industry. We sold our home for far less than it was worth. But we bought a home for a lot less than what we got for our home—and cut our living expenses in half!
Our new home and neighborhood isn't perfect—and we miss Wisconsin. But removing financial stress from our daily lives has been liberating! Not worrying about our finances frees me up to concentrate on taking care of myself and helping other cancer patients like I had hoped and planned.
Maybe you will need to make a major move or life style change like we did. Maybe not; fine tuning may be enough. The important thing is be proactive. Take charge, set a budget, and create a plan—then follow it.
Next week, I will discuss identifying your priorities for your life plan. Until then, feel good and keep smiling! Pat
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Great advice, Pat! Where were you 19 months ago?!
One of the most stressful aspects of being ill was tackling the financial issues. Like you, we looked closely at our income and expenses, the cost estimates of treatment, our insurance options and tried to create a best case - worst case plan. There was so much speculation about how everything would play out, we were in totally new territory. A diagnosis and medical plan was going to dictate many things. Could I keep working? Those early days were not pretty! You're right- cast aside your fears and be proactive.
BTW - we love dogs, I had blood clots in the lungs and I adore my wife, too!
Looking forward to the next column from sunny Florida! Sean M.
Hi Sean-
Great hearing from you! Are you working now? How did you deal with the uncertainty--were you able to plan for life after your multiple myeloma diagnosis? Pat
pat
great article, how true of your actions. in a year and a half we have sold one of two remaining rentals held at time of diagnosis, a boat and two of four cars. the hardest was my favorite M3, i used to love performance driving now i don't have the strenght nor the ability to concentrate at high speeds. heck i even gave away the golf clubs for lack of being able to swing a club. life changes and we need to find a new box to live in and to set the parameters of that hopefully not shorten life. the hardest part is not falling into the trap of just existing but experiencing the changes to come. i decided the other day that surf fishing will be one of my new adventures but i will have to pay attention to the effects of the sun from the medication.
take care
jim in south carolina
Hi Jim-
My family rents a home on Pawleys Island on the South Carolina coast every spring. My father is from Aiken originally. Hey--it was hard--I sold my pro style golf clubs for $30 before we moved last year. Surf fishing sounds like a great idea! I just walk and walk and walk. Good luck! Pat
Hi, Pat: Unfortunately residual PN, bone pain, fatigue, continued medical appts., and maintenance therapy have limited my current ability to return to a 'normal' work pattern. While I'd love to be back at it full bore, I've learned to be flexible in my expectations and honest with myself as to how much I can do. My wife is good at reminding me to 'take it easy.' I do set short, intermediate and long term vocational goals and probably set more non-work related goals (family, fun, recreational,church, travel, etc.) than I did in the past because I feel the proverbial clock ticking in ways I'd never felt before. We all know that ticking click, don't we? Thanks, Pat. Sean
Hi Sean-
I like the way you phrased this: "I do set short, intermediate and long term vocational goals and probably set more non-work related goals (family, fun, recreational,church, travel, etc.) than I did in the past because I feel the proverbial clock ticking in ways I’d never felt before. We all know that ticking click, don’t we?"
Setting short, intermediate adn long term goals... Sounds like a great topic for one of your upcomming columns! Pat
Pat,
I'm older than you, and so have had more life. I will conceivably live out a "normal" life span. We are retired and self sustaining, another good thing. But the uncertainty is still there. It wares on you.
I'm 67 and have been in treatment for MM since spring of 2008. Vertebrae replacement first then Velcade, and now Revlimid.
Is there a gluten connection with MM? I see some on gluten free diets. What's up with this? And what evidence have you found?
My husband, 48 at dx, worked through the entire treatment (Little Rock). It wasn't easy and it required I not work and support him. He's an engineer at a management level. The UAMS campus is set up for patients and caregiver's to work and he did. He is soon to be 51 and still has fatigue and edema from the maintenance therapy.
We planned for the loss of a loved one, but not disability. Certainly we had the usual insurance at work for it, but it just didn't begin to cover our expenses with two kids in college and a recent coast to coast move. I had resigned my job for him to take this job, so I wasn't working and thrust into caregiving full time 24/7. Traveling back to Little Rock 2,200 miles seemed daunting, but it worked out. The insurance did a good job, but with SCTs and treatment being done as outpatient, an apartment was needed, more out of pocket expenses.
Its not easy to be sick and dealing with all these other issues, money, healthcare, insurance, medical egos, paperwork, HIPPA, etc. Its surprising however, how many do manage to handle all the challenges and how many folks offer to lend a hand.
Dave has a great prognosis and loves his work. One child graduated this May and one to go. As difficult as it can all be we are feeling blessed. Talking about the money is a good thing and one that is not always enjoyed. Now its time for me to look for work.
It is impressive your willingness to make such big changes in your life. Not everyone would have been willing to do that. Kudos to you both for facing it head on and removing that burden from your everyday stress.
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