Birds In Spring: As Time Goes By
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.
Lou Ganim is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
When I was first diagnosed, one of my wife's friends was extremely uncomfortable around me. So uncomfortable that she made me think I should have hidden my disease to the world. I remember her staring at me with wide open fear, as she knew she'd have to talk to me. I wasn't angry at her at all, but it was so depressing to be treated like I had a dark cloud over my head.
2 months ago she was diagnosed with ovarian cancer and was given 3 months to live. I have become very close to her as she needs a lot of support. Like me, she has 3 young children.
What I'm trying to say, and I think you alluded to, is that myeloma isn't the worst things that can happen to us.
Look at what Steve Jobs from Apple accomplished with 5 years to live!
Lou--I really like your writing. Thanks, Stan
I find what you have to say very annoying & can relate to very little.Telling us don,t be depressed, oh sure because you say so. Alot of people are depressed when they catch a cold or have a bad hair day. Stop trying to put a guilt trip on cancers patients for not be 'UP BEAT' you must have a good attitude or else you will die. Everyone should feel as bad as they wany to, or as natually cheerful as you already are., you cant fake it. Some days I,m ok, some days I,m crabby. So what!!!!!
I am a 51 year old female. I was diagnosed with MM on 11/3/2010 and am currently in remission. As I read your article, I felt as if you read my mind. It is amazing how much alike we feel; I guess this disease has a way of doing that. Continued good luck - looking forward to reading your articles in the years to come!
One friend in the support group said 'It's OK to have a pity party once in a while!!', and that resonated with me too. You just wouldn't be normal if you didn't rue the loss of one's health. Even if you get back to something approximating where you were before the cancer struck, you have lost time and probably some function.
I actually feel pretty lucky now since have gotten past a lot of treatments over the last 2 1/2 (almost) years and am much better. But did go through a whole lot of mental and physical adjustments to get to where I am now...I was wearing a purple jacket out on walks, which got complimented upon. My response 'When I am an old lady, I shall wear purple'. Of course, I have no way of knowing whether or not I am an old lady now, so I just say it light heartedly.
If it weren't for the support of my dear husband, my sweet daughters, my parents, my siblings and a host of nice friends, I just wouldn't be in this good space. And I can't thank the health care personnel and system in general enough for saving me.
'Amazing Grace' would be the song to fit my mood this snowy November day. Best wishes to you all!!
Hi Stan -- Thanks. In my travels through the world of cancer treatment, I have met people who face extremely difficult circumstances and need so much support. There was one young man of almost 30 who'd been battling cancer for more than a decade, and he was so worn down by it. He'd already given up once before but got talked back into trying treatment again. I wish I hadn't lost track of him.
Joanne -- Thanks for your kind words. And congratulations on achieving remission. After all I went through to get there myself, the three years of remission I had when I was asymptomatic was just great.
Hi Judy -- I know exactly what you mean…me too: sometimes I feel good, other times I feel really, really crappy. And when I’m not feeling so good, I can be way more than just crabby, I can be downright nasty, if not mean, especially if a crash from dexamethasone is involved. As hard as I try not to be. But, I have to say, today is one of those really good days for me!
I just can't believe you never get depressed Lou. When I was first diagnosed, I cried for me and my family. And sometimes pain will make me depressed. But I think of it as normal. I read a dr. Bernie Siegal book which he stated that crying is like watering our inner garden. I thought that was beautifully said. Letting go of negativity and sadness by crying has helped me see the positives and happiness in my life.
Just picking up on something you said about us all dying some day:
Early on after my diagnosis a friend picked up on that: "Each day that passes, we are ALL one day closer to death", she told me by way of comfort. I think I took her somewhat aback when I responded with "Yes, but as far as YOU know, nobody has pulled the trigger on the bullet that's gonna kill YOU, right? I can see mine coming."
There have obviously been a lot of changes for me since January of this year, when I was diagnosed, but probably the biggest is an awareness of how valuable "now" is. Every moment is a lot more precious for me now than it was before, and that is something I talk about a lot with those in my circle. Squeeze every ounce of goodness out of every day God gives you, because, as it turns out, there is a definite limit to how many we get.
Thanks for sharing and writing as eloquently as you do, Lou!
Well, I have had MM since October 08. Lots of chemo, SCT, lots more chemo, and on and on. I don't feel exactly lucky, but I see a lot of people who are having a harder time than I am. I guess I am just thankful for all the chemo, biopsies, tests, etc. because it keeps me here. No one is promised tomorrow, and I just want to enjoy my life as much as I can. I don't like to feel sorry for myself, it does not help me a bit, but being postive does help me. Everyone just hang in there and live the best life you can.
I want to say thanks to all of you! Your courage and openness inspires me. My husband was recently diagnosed and is not ready to read about it, talk about it to anyone yet. He is staying active and trying to keep upbeat. He has done his first 21 day Revlimid round and the dex (which really beats him up) He is also doing Zometa. The doctor wants him now to go to Moffitt to see someone there about a transplant. I think this is making it all sink in. At first it just seemed like something of a dream now the reality is that its cancer. I don't want to seem like a negative wife but there are days when I get scared that he wont be with us..Thanks again for all of the honest talk it helps me understand a bit about what he is going through but maybe not talking about.
The term depression means different things to different people.
"True clinical depression is a mood disorder in which feelings of sadness, loss, anger, or frustration interfere with everyday life for weeks or longer".
I'll hit a rough patch and feel down for a couple of days. Down enough where I'll go to bed at 7pm and read, for a couple of nights. Or sit and surf the net for an extra hour in the morning because mentally I feel down. Or avoid going to the hardware store because I just don't want to interact with anybody. But I have never hit a rough patch that was longer than a couple of days in a row.
I might casually refer to it is as depression. But true depression is different and very disabling.
When the whole "time is ticking by" thing enters my mind, I try and think of goals that I'm accomplishing by living. If there was no chemical therapy available, I would have left a 16, 13 and 11 year old with no father. I figure every year I can make it is going to be a year of maturity that they'll gain and be better prepared for my possible early demise. And also be an extra year of memories they'll have of me. My oldest has moved out and is going to college now! (I'm smiling as I type). My next goal is to start teaching my second oldest to drive. My most immediate goal is to grow hair back on my head! Goals keep me sane and prevent my mind from wandering too much.
Sherry,
For me, the first 2 months were the toughest. I had no symptoms when diagnosed, but once I started Aredia (like Zometa), I went through some extreme achiness, and the Revlimid made me tired. I figured I was just going downhill from that point on, which was very depressing. After my body acclimated to the drugs, my physical and mental state improved markedly.
So hang in there. Also many people find the transplant(s)to not be as big of a deal as they anticipated.
Thanks so much Stan I appreciate the insight. Be blessed!
I think that what I feel is grief rather than depression. I have had true clinical depression in the distant past and what I feel now is quite different. A sadness or grieving rather than depression. I think when you are diagnosed with any life shortening illness you grieve for the years you will not have and for things you can no longer do but also for the what you imagine will happen after you die. I know I grieve for the idea of my husband coping with old age without my company, and for the grandchildren that I will never know.
Also I think a lot of the time its hard to sort out which emotions are "real" and which are induced by the drugs we have to take, I know that the steroids I'm on make me irritable and pain and tiredness take their toll as well. However there are ways to rise above all this much of the time. I find concentrating on the non-human world helps a lot to get things in perspective. I'm fortunate to live in an area with lots of native wildlife and watching the birds and the native animals getting on with their lives helps me to get the relative importance of my life balance.
Lou,
My wife was diagnosed six and a half years ago....Her "drill" is the same as yours except she had a "boost" transplant. We return to UAMS in Little Rock twice a year and repeat much of the testing mentioned.
She has remained fairly stable over these years, however has no interest in the group padder that many MM and other cancer patients love to roll around in and really get out the BIG pitty pot... This all has siginificant psychological baggage and perhaps better to live each day at a time rather than twist and stew about what we can't control. Be well and look forward to tomorrow!
Hi Forrest...I think that it takes a while to come to grips with such a change in your life as a cancer diagnosis..and anything that helps you work through it is a good thing. Support groups fill a niche in that they help people in many ways...psychological, social and as a group that works together to achieve goals. In my local support group, there are fund raising efforts going on to raise monies for research. And of course it is a nice environment for people to share their stories and concerns. On the online group, such as the Myeloma Beacon, there is also an opportunity to share news and views. It is an advantage of our new electronic age to be able to communicate with folks all over the world! I see from the info on this website that the articles are even translated into different languages. It's all good to be able to stay positive about oneself, but sometimes maybe people should seek medical help for that. Depression is a scary thing too, and it can distract you a lot from the everyday tasks and needs in your own life. So i would definitely be in favour of anyone who notices that they are getting too 'down' over having myeloma, to get some professional help with the matter.
'Look to this day, for yesterday is but a memory, and tomorrow is but a dream!'
Hi Nancy S., Although it is great to have as you said, "the electronic age". Yes, it is great and we can all keep up with the latest MEDICAL information. However, having read and re-read you comment, I believe that you missed my point - misery doesn't always love company. That isn't profound, psychological or sad. Live with different attitudes is harmony.
hi Again...oh I totally agree with trying to live in harmony. That's always the best...to strike a balance. It's just a little difficult at times...people may be going through a 'rough patch' and need to seek counselling or something like that. I didn't mean you personally. Best wishes to you and you wife!
That's very true that all go through 'rough patches' and and each person/family has their own approach and path through thoses times. Our best to you and yours.
I just wanted to take a moment to say thanks for all the comments and discussion on this topic. I think we initially got a bit sidetracked with the “depression” thing because that wasn’t really the thrust of the piece. My fault because I was trying to be a bit “cute” I guess with the lead-in. On the other hand, however, the discussion got quite good and stirred some things up a bit. And as a result, we got some great insights into how people think, feel and are faring. I hope that others who read this piece, especially all your comments, discerned the same.
I don’t even know where I would start if I were to single out comments you made on this because they all were so good, insightful and revealing. Those of you who drop in fairly regularly here were, of course, excellent as usual in conveying your point of view, and those commenting for the first time really gave me, and I hope others, some new perspective on how we’re all dealing with myeloma and how it impacts our everyday lives.
Thanks again to all of you.
Lou, Thanks for your time and efforts in writing your opinion articles- they are interesting. I couldn't help but notice a couple of words/phrases in your latest 'wrap up'. They were, "insightful and revealing" as well as "discerned the same..." Are these works used because you are a psychologist or some clinical professional? Just curious, and thanks again for your efforts.
Hi Forest...nope, not a clinician of any type...can't even say I play one on TV...
Lou,
Such a shame...... big bucks on TV and more than in the hospital/clinic. As usual, little rhyme or reason.
Beautiful and important post, Lou. Thank you!
Like you, I am grateful that I am not taken to an overwhelming sense of melancholy or debilitating depression. Certain things occasionally trigger a sadness that briefly sends me into a 'if only I didn't have MM' or 'I hope that I have enough time to...', but I make a concerted effort not to let MM rule the roost. Sometimes easier said than done, right?!
While my own physical struggles have been daunting, many have fared much worse. I certainly understand that some patients and caregivers face depression of various forms. My thoughts and prayers are with them.
Your posts ALWAYS make me think more deeply about my own struggles with this disease. Again, thank you. Happy Holidays! Sean M.
Hi Sean – Thanks for writing in, and thanks for your kind words. What people wrote in response to this column was enlightening. And I think over time some have gotten the misconception that I’m missing the point about emotions such as anger, frustration, anxiety and, of course, sadness. Boy, do I get it about those kinds of things, and perhaps I haven’t been clear about that. Sean, I read every one of your columns, and you seem to be doing very well. For me, I believe that the best way to deal with this disease is to just keep living my life as best I can, but I also understand that is much harder for some of us than for others. And you are so right, having to deal with myeloma’s “challenges,” which are always lurking around the next corner, can make that difficult sometimes. Have a happy holiday and have a great 2012…and beyond…way beyond!
Hi Lou,
Wondering if you would like a word of encouragement from a friend from the past - like Class of '63?
Remember Dan from Clarke St?
Well this is Ellen from the South Side.
Have been reading your columns here for a couple of weeks.
Wishing you the very best holiday !!!
Hi Ellen -- So good to hear from you. I'm going to email you.
Progress toward fundraising goal
for all of 2020:
15%
For more information, see the Beacon's
"2020 Fundraising: Goals And Updates" page