Pat’s Place: Living One Day At A Time
Finding out that you have multiple myeloma can make you a little neurotic. What else would you expect from someone who has been diagnosed with an incurable form of cancer?
After all, learning you might die in the relatively near future is enough to drive anyone a little crazy.
But the key here is “relatively near future.”
Although there are exceptions, the younger one is when he or she receives their diagnosis, the more difficult the adjustment seems to be.
It is usually worse in the beginning because, young or old, most newly diagnosed patients eventually learn to cope. But coping isn’t really living.
The irony isn’t lost on me. After learning you may only live four, five, six or maybe eight years, we spend the bulk of those years worrying about dying—thus wasting much of the precious time we have left.
What ever happened to living one day at a time?
I understand this is pretty heavy stuff. But that’s the point. The sooner we can face our own mortality, the sooner we can get on with living our lives.
I know plenty of patients who are justifiably disturbed by their diagnosis. Often they have monoclonal gammopathy of undetermined significance (MGUS) or smoldering myeloma—these are people whose myeloma isn’t even active yet.
But young or old, MGUS or symptomatic myeloma, I give the same advice to most every newly diagnosed patient. Let me take a moment to share that advice with all of you now:
- Be patient. Easy advice to share, hard to follow. Give yourself time to adjust. Yes, it’s normal to be upset. Everything is new and scary. Often this is the first time you have faced a serious illness. It is perfectly understandable for you to be really upset. Suddenly facing one’s mortality for the first time isn’t easy. But you will know so much more about multiple myeloma and your treatment options in five or six months. You will also know a lot more about yourself and what you can and cannot withstand. You may find you are a lot stronger than you thought.
- It’s ok to be angry. We are all going to die someday. But being told that day may come sooner, rather than later, isn’t an easy thing to hear. Realizing you are facing a life of medical appointments, needles, expensive drugs, and unpleasant side effects is also no picnic. So after the shock wears off, cry, yell, or scream—whatever you need to do to let it out. But make a conscious effort not to let anger become a permanent part of your life. Like being patient, letting go of your anger is easier said than done! But it will eat you up if you don’t. Internalized anger can actually be as destructive as the cancer. Find a way to get it out and let it go!
- Learn to appreciate the simple things. It is easy to lose sight of the good things in your life when you are angry, despondent, and in pain. But there are beautiful, hopeful things all around you every day. A sunset. Your child’s smile. An email wishing you well from an old friend. An understanding nod or sympathetic conversation with the person sitting next to you in your oncologist’s office who’s going through the same thing. I bet you can find at least as much good as bad in your life—if you take the time to look.
- It’s only pain. As an athlete growing up, a coach once pulled me aside after I had twisted my ankle and firmly but quietly said, “I know it hurts, son. But you aren’t injured. It’s only pain.” There is a difference between pain and injury. The pain from an inept nurse or med tech who takes three times to start your IV (I hate that!) isn’t injury. Yes it hurts. But the pain will go away. So while the nurse is digging around in my hand, trying to get past the valve in my vein, I slowly repeat to myself, “It’s only pain, it’s only pain…”
- Don’t worry, be happy! We all remember that song. What great advice for a multiple myeloma survivor! Worrying rarely helps anything. But the stress and anxiety it causes robs you of precious time. Time you could be spending appreciating the simple things.
I could go on, but you get the idea.
I experience bad moments, but I never allow myself to have a bad day! Don’t let a little pain or disappointing news ruin your chance to find and grab onto something that brings you, someone you love, or even a complete stranger joy.
Life is too short—especially for a multiple myeloma survivor or caregiver. Remember, always try to feel good and keep smiling! Pat
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Awesome......thanks Pat!
Pat: Loved this! You're so right....it's one of those unbelievable diagnoses, for the "victim", the caregiver, the family, everyone concerned. As our daughter so aptly puts it....cancer metastasizes to the entire family.
For those of us with newly diagnosed loved ones (my hubby was dx in Oct) we have to work thru having the great attitude, being patient, etc. My honey and I learned, very quickly, to never take anything for granted ..... especially life.
Thanks for helping us to remember to keep smiling!
Sarah
Great post Pat, and you know me, I subscribe to this way of thinking, allowing for the fact that it is a shock filled with fear, dread and worry on so many very personal levels. But once you get over that and the denial, a patient and their caregiver need to work on moving out of that mode and into one that you describe or they will be wasting what precious time they have on unpleasantness instead of learning to LIVE and enjoying their families and friends. That we will die is indisputable. What from and when is what we don't know.
If its too soon, or we are suffering in pain, these are things we all have to come to grips with and manage as best we can. Thank God we have each other to help us get through the days and be a beacon for those newly diagnosed.
Sarah, I love your daughter's take and have enjoyed immensely all that you and your hubby have so generously shared with the rest of us on your blog. You are both an inspiration.
Thanks, Aaron!
Sarah, I have never hear the phrase "cancer metastasizes to the entire family." I like it! May have to borrow that for future musings...
Lori-
I thought you would understand! Just because one accepts possible realities, doesn't mean he or she is giving-in or giving-up. I would love to live a very, very long time. But I won't feel like a failure if things head south at some point and I can't hold on- Pat
Pat, there is NO WAY any of us could ever view you as a failure buddy. No matter what you have made your mark in an incredibly BIG WAY! Whether we agree or disagree with all that we think, write, or feel, it is worth every moment of time and effort you have put in to shining a flashlight on A PATH for those newly embarking down this road. It's gravy from now on buddy, not too worry. Hugs to your better half! I know that all that you do is in large part thanks to her support of your endeavors, of which we all benefit.
WOW! Thanks, Lori! But what I was trying to express was using acceptance as a way to avoid feeling any one of us are "failures" or "let someone down" if we don't survive as long as expected. I think you would agree sometimes, no matter how positive our attitude--or how great our care--the myeloma may still take us before we are ready or expect it- Pat
Absolutely Pat. I think most of us haven't accepted that we will die. It's some nebulous idea, and we don't like to talk about it. When we get a illness vs. a sudden death, these difficult topics come to the surface and we are often ill equipped to deal with them. Acceptance of our fate can certainly be misconstrued and you alluded to this in a past post about people saying things like, you can beat this, she's a fighter, etc. As if... I think there are things we can do to improve our situation and that is true in general. Acceptance that it will be what it will be, but in the meantime... I like it.
Exactly, Lori! Pat
Another fantastic post, as usual. While I don't have MM personally (I have WM - a related lymphoma), I hope you don't mind, but I shared your posting with fellow members of the WM discussion list. Your sheer grace at meeting the enormity of your disease and your talent at putting in writing so clearly various aspects of being an "incurable cancer" warrior are evident with every post you make. Best of health to you!
Thanks, Pete! Best of luck to you and others in the lymphoma community- Pat
Great post. The shock of the diagnosis--then getting on with our life.
YES! The sooner we can get past the shock, the sooner we can begin to take control and responsibility for our own health care. This is especially important when dealing with a cancer featuring so many treatment options. And yes, then we can get on with living our new normal lives- Pat
Pat,
Great post..thank you. My husband found out December 24, 2011 that he has Plasmacytoma. I really can't find out much about it. Everything I look up comes to MM. He went through 3 weeks of radiation in Feb..He is so young 42 and I am 36. It has been really hard but I am trying to be strong for him and our children. If you find out any information on Plasmacytoma I would be thankful if you could send it to me. Thank you again.
Ginger
Sorry December 24, 2010..I think you could call that a major typo lol
Ginger-
I believe a plasmacytoma is a group of myeloma cells which form a tumor or lesion. It is called multiple myeloma because there are rarely cases where there is only one spot where the myeloma cells are growing.
Plasmacytoma's are often treated with radiation. I have one in my right hip and just completed 13 radiation sessions.
If your husband only has myeloma in one spot--great! But it is likely it may appear again later in others. This is just my educated patient's explanation. But this would explain why everything keeps coming up "multiple myeloma."
Good luck to both of you! Pat
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