Arnie’s Rebounding World: One Day At A Time
One of the most common clichés in the cancer world is “one day at a time.” However, I think that it is human nature to look ahead, to plan, to envision where you will be at a certain point in time.
We all have things that we are looking forward to: events, milestones, and trips.
I’m planning to go to Washington, D.C., in two weeks to visit my son. I’d like to take that big trip in 3 months. I’ve got that big wedding anniversary party for my parents coming up in July. My daughter graduates from high school and my son from college in a year.
Unexpected things can certainly happen to anybody at any time, such as the proverbial dropping dead of a heart attack or stepping off a curb and getting hit by a car. But for the most part, people do not factor those things in. Most people take it for granted that their lives will carry on and that they will make it to important events.
For myself and many other multiple myeloma patients, this is not the case.
Dealing with multiple myeloma, particularly at the current stage of my disease, has truly forced me to live one day at a time.
It seems that circumstances change monthly or even weekly with each new lab test or scan. This prompts changes in the treatment plan that require either not making plans or having to cancel them.
Since my donor (allogeneic) stem cell transplant in August, I have relapsed with multiple myeloma, requiring radiation and now more treatment. I am currently on a regimen of Kyprolis (carfilzomib), cyclophosphamide (Cytoxan), thalidomide (Thalomid), and dexamethasone (Decadron) – known as the “CYCLONE” regimen. So, I am back to awaiting every blood test to see if we are getting a response.
Having been off immunosuppressive therapy for a couple of months, I recently developed some chronic graft-versus-host disease requiring restarting the immunosuppressive medication Rapamune (sirolimus or rapamycin).
I must be ever vigilant for infection.
All of these factors have caused me to adopt the mantra of one day at a time.
When friends ask how things are going and what the plan is, the answer is: we are taking it one day at a time.
It’s impossible to predict what the response to treatment will be. It’s impossible to predict when an infection will rear its head. It’s difficult to look very far into the future and impossible to plan.
There are, of course, some advantages to the ‘one day at a time’ approach. In fact, many Eastern religions such as Buddhism emphasize the concept of trying to live one day at a time, to be living in the moment. Sounds great, and I get it.
I’m trying to live my life as normally as possible, despite the treatments. There is no doubt that it makes me more aware of the preciousness of each day. I try to appreciate what I have and take pleasure in the moment. I try not to waste as much time getting angry or upset over things I cannot control.
I have to admit, though, that it would be nice to plan something more than a few weeks out and not have to worry about having to cancel or miss it because of illness, a new treatment, or worse.
Arnold Goodman is a multiple myeloma patient and columnist at The Myeloma Beacon. 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 .
HI Arnie, thanks for the update on your treatments! i hope that you do get to each and every one of the special occasions marked already on your calendar. At least you will keep those dates open and free from any app'ts etc. and you can always cancel travel plans if necessary. It's great how flexible airlines, hotels etc. are now...many with only a 48 hr. cancellation requirement. Best wishes on your health improving also!
Arnold
I empathize with you and know, somewhat how you feel. I went through one year of weekly VMP regimen and was very conscious of contracting infection, tiredness, feeling very tired and not knowing if things would get better. The eastern religions Are not alone in their "day at a time" approach to life. Jesus Christ made this famous statement at Matthew 6:34 "So never be anxious about the next day for the next day will have its own anxieties. Sufficient for each day is its own badness."
This mental inclination, not easily moulded into my personality, has helped greatly. I find my wife and myself now do a lot more spontaneous trips and visits closer to home, when the day affords me energy and feelings of well being. Fortunately both of us are retired and we can leave at the drop of a hat when all the puzzle pieces fit together.
I have adopted a no touch mentality when it comes to meeting people. No hand shakes, no hugs and no visiting if the hosts or guests have the sniffles, colds or young people are involved. Once everyone knows and appreciates that a suppressed immune system is probably with me for the duration, all are understanding and welcoming.
Life is definitely different than before when I was travelling all over the globe for work and pleasure. However it was not really better, it was just different. Now 2 hour drives to our favorite eating places, parks, relatives takes the place of hours spent in airplanes, airports and exposure to who knows what.
I have managed to stay "M protein" free for a year now and I hope it continues, but living today and leaving tomorrow to itself has been satisfying and enjoyable. As and engineer by genetics, I plot out all my blood test results and there is actually predictability in the numbers. This gives me a concrete view of today and let's me dare to plan a little for the future. However when I awake tomorrow and the strength and energy are not there, my plans change to adapt to that days condition.
Please continue to write and express to all the MM community about your issues because that helps all of us examine our own situation and learn to adapt. Canada geese honk to give encouragement to those leading the "V". That's my honking your reading.
Thank you so very much for your cander and honesty Arnie. I look forward to your writtings because I find them so very real. You've had a hard time my friend and I hope and pray some better news is coming your way very soon. Tell the family you love them. I'm sure you are as admired by them as you are by me!
Thanks Arnie.
That's a really good and accurate post of what it's like living with myeloma. I wish you well, and every other myeloma patient, on your continuing journey with this horrible disease.
Every day is a gift.
Andy
From the UK
Arnie: I know of what you speak. While my myeloma treatment (Velcade) is going well, I am now experiencing a slow meltdown of my immune system and picking up infections and other twists that I had not planned for. I am sitting here this morning typing this comment, making arrangements to get to an ENT appointment (unknown infection, too ill to drive), and canceling small events from my calendar--a hair cut, coffee with a friend. Little things, but they add up and they make me realize the importance of "one day at a time"--day by day by day.
Thanks Arnie for your wise and honest words. All your columns have helped me in my struggle with MM over the years.
I hope your present treatment will give you precious time to enjoy your loved ones. I also try to live one day at a time as I journey on with relapsed MM.
Warm thoughts from Ireland
Hi Arnie, good to hear from you!
You’re so right and one must never loose hope. After all you are in the best place in the world (USA) when it comes to treatment options.
Being a high risk patient myself I also try to take one day at a time and be grateful for my life so far and my three wonderful children. My two sons have moved out to study at universities. My darling daughter is almost 14 and we bought her a dog a year and a half ago to lighten up the situation a bit. She absolutely loves her dog, an adorable golden retriever. Actually we all love him and he has brought so much joy to our house. I wasn’t supposed to be with him after my allo but after being away from him for three months nothing could stop me!
My very best wishes to you!
Arnie -- Thanks for another nice article. Sometimes my teenagers think living one day at a time is the same as "live for the moment" which is the same as "buy an expensive car and don't save money" ha.
Asaryden -- I say "damn the torpedoes" when it comes to my dogs too. I'm more careful when my counts are low, but many days I drive around with three dogs in my minivan. The dogs and I love our car rides. No matter what I do, they always seem to really like me!
Looking forward to hearing you speak at our Florida Nature Coast Multiple Myeloma Support Group Wednesday evening. We so appreciate your making the one hour drive north to see us, Arnie! Anyone living or visiting in the Tampa area are invited to attend. Your taking the time to give-back to the myeloma community through your columns, fundraising efforts and outreach is very kind for someone living one day at a time...
Hi Arnie,
Your columns are great and get to the heart of the matter. I hope you get to all the upcoming festivities, really enjoy yourself and dont contract any infections. All the best.
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