Birds In Spring: As Time Goes By
Published: Nov 15, 2011 9:43 am
Since I got my myeloma diagnosis five and a half years ago, I haven’t been given to bouts of depression.
With a myeloma diagnosis, you really don’t have time to feel sorry for yourself.
I’ve tried to take in stride all the things “they” have done to me – two autologus stem cell transplants, a myriad of chemotherapy side effects, an open lung biopsy, and endless needle sticks, just to name a few.
Then there’s the prodding, probing, and testing by various doctors and specialist of all kinds. There were spur-of-the-moment ultrasounds to check my legs for possible deep-vein thrombosis and numerous CT scans, MRIs, PET scans, and plain old-fashioned X-rays. In one of the MRIs, by the way, I wasn’t given enough hearing protection, and afterward I could barely hear for three days. That’s a medical error and an adverse event rolled into one.
In the face of all that, I’ve just tried to get on with my life as best I can. I’m more concerned with how those around me are faring, and I’ve tried to convey to them my sense that this is just another challenge in the path of life you put up with. The alternative is to let it bring you down.
Others close to me, though, have an additional burden that I don’t have – they know that at some point, I likely will be gone, prematurely probably. I think that’s something heavier than I face.
This is a prelude to the one thing that bothers me. It’s that the passage of time weighs heavily on me.
No one, of course, wants to stamp an expiration date on my life. There’s no “use before” label with a date.
I first brought this subject up with a column last November. I’m revisiting it because of one thing: How fast that year went by!
I read the other day that long-term survivorship among low-risk myeloma patients is hitting at least ten years now. If you make it to five years, you have a 60 percent chance of making it another five.
Dr. Bart Barlogie’s myeloma research team at the University of Arkansas for Medical Sciences brags that their treatment regimen has resulted in many of their low-risk patients reaching the ten-year mark, and they are still going. Dr. Sergio Giralt at Memorial Sloan-Kettering Cancer Center told me that those with low-risk disease who achieve a complete response are likely now to die of something else besides myeloma.
I said a year ago that long-term survivorship is by no means guaranteed for everyone. That’s still true. At the end of this column, I’ll give you some examples.
I always keep in mind that tragedies strike the unwitting every day, everywhere – all the time. Just pick up your local newspaper, or read it online. You’ll see. Your getting cancer – multiple myeloma – is just another one. Of course it’s not fair.
I know that I constantly counsel you not to get depressed about having this disease. I also know that we’re all different and no one of us is immune to depression. But for most of us, I can only repeat that feeling sorry for oneself is just one big waste of precious time. And this disease makes time “precious.”
Every day brings us closer to our “use by” date, whatever it is.
That’s true for everyone, by the way, but I think we myeloma patients feel a bit differently – we know that we aren’t likely to live as long as we’re supposed to. That’s what they tell us anyway. Often, it is my goal now to prove them wrong.
I thought about revisiting this “time” matter as the summer season was winding down and fall was beginning. I think the weight of time strikes me most during the change of seasons. Those seasonal changes seem to be coming at me rapid-fire. Time is going by much too fast. I find myself saying to folks: “I don’t know where my life is going, it’s going by so quickly.”
I’ve said often that having myeloma changes you. Not necessarily in a bad way. There is a certain sense of urgency to one’s life post-diagnosis, when you’ve got some kind of time stamp on your life, even if no one knows what it is.
I do some things I might have once put off, other things I find are suddenly important that might have gone unnoticed in my previous life, and still other things just aren’t that important to me any more.
I don’t seek or demand perfection from anyone, although I’m not sure I ever did. I realize that people need to grow and learn on their own.
Sometimes people want to know what they should do, and in the past, I’d probably just have told them. These days, I often will share my thoughts about whatever it is and say, or intimate, in the kindest way possible: “Now you figure it out.”
Having this disease should make you more aware of what’s going on around you. It’s really not just all about you and myeloma.
And as you continue to be a survivor, keep in mind that while all the new therapies are giving us a new lease on life, not everyone benefits.
For some, their personal version of myeloma is just too aggressive.
For example, these are people I’ve read about through Google Alerts who have passed away in the past year or so:
- Joseph William Ciarocchi, chairman of pastoral counseling at Loyola University in Maryland. Age: 66. Survival: 2 years.
- John Brendon Brett, Jr., of Henderson, Tennessee. Age: 66. Survival: 2 1/2 years.
- David Kent Hudspeth of Lafayette, California. Age: 67. Survival: 2 years.
You don’t know them, but you should keep their families and friends in your prayers and thoughts. Their time together after diagnosis was just way too short.