Pat’s Place: Don’t Let Denial Stop You From Becoming An Enlightened Myeloma Patient
I just finished re-reading my column from last month on the topic of denial about death and dying. The column generated so much discussion, I wanted to write a follow-up.
Let me start by clarifying my take on denial:
We all need to grieve or emotionally deal with our diagnosis in whatever way works best for each of us; I would never be so presumptuous as to tell someone how they should do that.
Denial can be a magnificent coping tool. If trying to come to grips with your diagnosis is overwhelming and denial works best for you, do what you need to do in order to get through the day.
Several people felt that my column was a downer because they are newly diagnosed, hold out hope for a cure, or are successfully living their lives without thinking about death or dying. That’s fine. There’s no need to discuss death and dying immediately; there’s nothing wrong with taking things one step at a time.
That is, as long as it doesn’t inhibit you from learning about multiple myeloma and your treatment options. Becoming a well-educated patient should be the cornerstone of our new normal lives.
With so many therapy options, being well-prepared to make important and informed decisions about our medical care is not only a good idea, it may actually help you live a longer and better life.
For instance, keeping current with myeloma-related news can help you learn how to mitigate the inconvenient and painful side effects of ongoing myeloma therapy.
Some of you have been fortunate to not have to deal with the serious damage that can be associated with myeloma and myeloma therapies — yet! But almost all of us eventually will.
Even if you haven’t been forced to undergo dialysis, live with painful bone damage, peripheral neuropathy, or the emotional anxiety of dealing with an unexpected relapse yet, you will most likely experience one or all of these sometime in the future. Over 95 percent of multiple myeloma survivors relapse — and that’s a generous number. Preparing for the inevitable should help make dealing with whatever comes your way in the future easier.
You don’t need to live and breathe multiple myeloma 24/7. You don’t need to let it get you down or stop you from living, but it is important to be at least one step ahead of myeloma.
There is one more downside to isolating yourself from our unfortunate multiple myeloma world:
Without diving in, you may miss out on meeting some amazing people. Sharing experiences online, over the phone, and in person may help you cope. It did for me! By connecting with lots of fellow myeloma survivors, I have heard from and met some of the most amazing people I’ve ever known. And I’m convinced I’m a better, stronger person for it.
For that, I want to thank all of you.
Feel good and keep smiling!
Pat Killingsworth 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 at The Myeloma Beacon, please contact the Beacon team at .
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Hi Pat...thanks for the good column, which I actually could relate to better than the one last month! We meet so many great people and learn so much on this 'journey', that that is one consolation for having cancer. Those of us who are survivors still keep our ears and eyes open to learn about new developments and treatments, should we need them in the future.
Learning that you have Multiple Myeloma is very freightning. I believe your past topic of death and dying maybe just hit a "nerve" for some MM's because of whatever they may be dealing with at the moment. Next week or month they may accept the topic and it may actually help them. In July I will be a 9 year survivor! In my journey I have experienced and delt with some of the situations you mentioned today. We certainly have our ups and downs! I believe the older, rather than the newer diagnosed MM's, have more research and experience under their belt and they can cope with the many different situations better. I know I can. I think you are correct about preparing for the inevitable. We can't ignore it because it will come. And yes, I admit as I type this, it does scare me a little. But, I continue to think positive and try to live my life to the fullest. For myself I actually "saved" the column to refer back to at another time, if and when I need it. I thought last month's column and todays was very good. Thanks for all you do for us!
Hi Pat - I'm not sure I fully understand your real point in both this month's and last month's posting. In your first message you seem to be saying that denying that myeloma is terminal goes hand in hand with not staying informed about the disease. And if one is in that mode, then he/she is living in a state of false hope, whether he/she experiences serious effects of the disease or not. Certainly having any cancer diagnosis can awaken us to our mortality, and for some, depression may be inevitable - thus the importance of working with a counselor or therapist to deal with the fear of death. I was diagnosed in April 2011 and so far have had few disease effects; it's been more about drug side effects, and thankfully those have not been severe. My view of myeloma as a terminal illness is this - life is a terminal illness! - we are all going to die. Am I more aware of death/dying since my diagnosis - you betcha! But keeping focused on the fact that myeloma is terminal keeps you focused on the future, instead of today/now/the present. Keeping focused on the fact that myeloma is terminal perpetuates worry, which creates stress, thus impeding healing. I still keep up with what is going on in the myeloma community, participant in a support group and maintain an open line of communication with my oncologist. I still cherish life, aspire to live my fullest potential (even at age 66!), and try to live each day as if it might be my last. I am grateful for this disease and what it has taught me; more importantly, I accept whatever the future holds for me. I wish the same for you Pat and for all our fellow MM survivors.
Sounds like you got the point, Kathy! This is complicated stuff. Its what you read into it. I felt I needed the second column to help reassure some readers that may have felt bad because they don't think about all of this very often--if at all. But you articulated my underlying point,"denying that myeloma is terminal goes hand in hand with not staying informed about the disease." It doesn't mean we have to obsess over it. And we all deal with it in different ways. Personally, I accepted my terminal diagnosis early-on. Now every day, week, month and year is a bonus! Others work their way back. It's human nature to think we can beat this thing. And some do for a much longer for expected time. Some get "lucky," some take care of themselves and help prevent infections and keep their bodies strong. Maybe that helps. But others with high risk, aggressive myeloma; sometimes it doesn't matter what they do. I hope/even expect to be around for five or ten more years. So much to do! But if my myeloma gets angry and decides to take me earlier, I'm OK with that. The elephant in the living room, the overriding question is, are you?
Hello, we sometimes hear about the power of positive thinking. Do not forget the power of negative thinking ! Looking back MM probably started for me perhaps five years ago, I can remember becoming abnormally tired very easily and people commenting that I did not look very well, but it was in 2011 that I finally had the blood test which showed the presence of this illness. I thought to myself that life was now just a matter of months before moving into the cemetery! Although I was nearly 60 years old, the youngest of my four children was only eighteen months old! I had visions of horrific treatments and examinations, long periods in hospital and rapidly deteriorating health. If only I had accepted what the doctors and nurses were trying to tell me! I never spent a day in hospital, everything was done as an outpatient, and mostly it was just regular blood tests and taking medication each day at home. I did not have a stem cell transplant although my stem cells were collected for possible future use. Today I do not even feel ill, I feel better than I have for years and I am learning to believe what the specialists are telling me; that there has never been a better time to become ill with MM, no two people are the same of course, but there has been dramatic progress in recent years in treatments and how to use these treatments. So try not to be too negative, MM is a treatable illness, there are increasing numbers of people living a good quality of life for ever increasing lengths of time! Nobody lives forever, every human being has a terminal illness, its called LIVING !
Glad you are doing so well, Ian! I have been trying to find a research study that supports the supposition we all make that staying positive -- or not being negative -- helps us live longer. Even the ACS doesn't agree. One isn't dependent on the other. Now, thinking positively may help our quality of life. And being negative can hurt us if we become non-compliant patients and we don't eat well, exercise or seek medical attention when we should. But I don't believe looking at things realistically dooms us to a shorter life. I turn it around and look at my longer than expected time as a bonus! One I hope keeps paying-off for a long, long time!
Pat
Looking at MM realistically does not equate to negativity. I guess it is in my engineer's genes to look critically at everything I do. Critically does not mean negatively. We can and need to analyze our situation, separately from our emotional response. In this way we can ensure we choose the best treatments, diets, exercise that are best for us.
I have heard many people say that positive thinking helps one survive longer. I have seen many very positive people die. Personally, being at peace with myself, being calm, being loving toward those close to me is very therapeutic. Every one of us is different and must work to find what is now normal moving into the future.
Both of your articles are excellent, because they stirred our soul and made us examine our attitudes, motivations and coping skills. Thanks for the spark to make us examine our situation and see whether we can make ourselves better able to enjoy our life despite our illness
Take care
"Looking at MM realistically does not equate to negativity... being at peace with myself, being calm, being loving toward those close to me is very therapeutic." Well said! It took me two columns to dance around what you wrote here this morning. Thanks, Eric!
Pat...Thanks for bringing up "the elephant in the room." Befriending our vulnerability in the face of this chronic illness is quite a challenge. MM give us an opportunity to taste our mortality in a unique way. Like survivors of other life-threatening illnesses, war, accidents, violence, and natural disasters...the closeness of death sometimes returns to us our life in a gift-wrapped package.
We certainly have some well-reasoned, balanced and sometimes eloquent readers! Thanks, Pat! These comments helps create a new facet of our challenge--a different way to look at a pressing reality.
Pat, your columns are always enlightening..I find that it's better to face life's 357 magnum when it points your way then turn away as it will get you anyway.I do suggest for the folks who are fearful to seek out the best, remember the NIH in Bethesda MD. is free and the Mayo doctors are approachable and helpful..Deal with the head of the horse gang,as we all know what comes out the other end..Attending patient doctor conferences works well for me..Thanks Pat for all your great input..
Hello Pat,
Forgive me, but I am beginning with the title of your March column because I found it a little disconcerting: "It's Time To Stop Denying The Elephant In The Room, Death and Dying." On first glance it seemed to be chiding those who have not yet reached that stage of reflection in their journey. As a retired hospice nurse who has multiple myeloma, I personally understand on several levels your own need to talk about death and dying. This is something people approach in their own way and time, but it is often a private or family experience or with friends. However, it can be facilitated by those who are trained to listen and guide the conversation, be it a counselor, minister, nurse, etc. As a counselor, you know from experience that not all persons can do this comfortably or successfully. I think your suggestion for those who want to talk about death and dying is worth consideration as long as there is an experienced person guiding the discussion. Meeting the psychological and emotional needs of those with multiple myeloma is important. Perhaps your column will stimulate further development of ways to meet these needs.
I'll end on a note of hope by Dr. Brian Durie, MD, Chairman and Co-Founder of the International Foundation. "Through medical innovation we can already achieve long-term complete remissions in 15 to 20 percent of myeloma patients." In May, 2013, he said they "are excited to announce the launch of the IMF's Black Swan Research Initiative to develop the first definitive cure of myeloma. By measuring minimal residual disease (MRD) we can determine how close a patience is to being cured of myeloma. With no detectable MRD, we are there."
May this be true!
Linda
I believe a "chronic cure" is close; very close, Linda. I would be shocked if a newly diagnosed, low risk myeloma patient wouldn't face a hopeful life expectancy of, say a diabetic today. I hope my columns weren't too big a dose of reality. But as a former hospice nurse, you understand--but its different when its us, right! Still, like you, I hear from, visit and know many, many myeloma patients that have passed-on. Tough stuff! Glad you (and me!) are doing well. I just don't want to forget about those that aren't. I don't want them to feel like they have failed or don't have the support or understanding of the myeloma community. That's all! Whew! Think I'm ready for a laid-back Florida spring weekend!
Hey Pat and others,
I think it may have been Bottomline who mentioned an alternative to Dex that his onc suggested. Anyone got any info on this drug?
Hi Pat,
Another great article, thanks.
I was out in my garden today in the wonderful autumn sunshine picking the last of the aubergine (eggplant) and zucchini. My tulips also needed lifting so I got stuck in to getting them out and weeding the beds. As I was doing this I was thinking about your article. Specifically "You don’t need to live and breathe multiple myeloma 24/7. You don’t need to let it get you down or stop you from living, but it is important to be at least one step ahead of myeloma." For me having MM means that what I see as an acceptable risk to me has changed. Of course there is the risk/benefit trade off. Prior to diagnosis if I was out in the garden it would have been for ~3 hours straight (I can manage one now with a bit of walking around). As I am on a lot of immunosuppressives (to keep the chronic GVHD stable) I have been told not to garden. This is where the risk/benefit trade off comes into play. I want to garden, I feel it is good for me so my concession to MM is to wear a mask (a good one) and 3 pairs of gloves! I minimize the risk by getting the children to spread the mulch and my husband to pull out the blackberries and do the heavy lifting. I am enjoying life and plan on doing so for a long time (how longs a piece of string) therefore I have to make concessions because I have MM. I think it is important to look realistically at the risks that we as MM patients face during the different stages of our journey.
You bet, Libby! I broke a lot of rules and started gardening and spreading mulch, mowing the lawn way before I was supposed to after my SCT. Wore a mask and let it rip! No stamina, of course. I thought about that last week while I was dragging old, rotting leaves from beneath bushes that run along the back of our pool cage. No mask on. I'm not currently immune suppressed, but next time I'm wearing a mask anyway! Sounds like you love to spend time in the garden. I say be careful and go for it! Life's way too short--think I've hit that one over the head enough last few months!
Van, I think you're referring to Medrol. I haven't had a chance to research it yet. I believe its similar to dex; maybe fewer side effects?
Pat- thanks for sharing your your thoughts and wise counsel. There is certainly no denying that you are doing wonderful work for our MM community. I may have to start a grassroots effort to get you elected as Mayor of Myelomaville! Happy spring!
Mayor of Myelomaville? Do I need to start a petition in order to get enough signatures to run?
Hey Pat, both of your articles were truthful and informative. Most no one wants to talk about their impeding death. I have a simple solution to when I start feeling sorry for myself and my impeding death : I go to the VA Hospital in Tampa and Moffitt for my treatments and blood work. When i am there, I see numerous young men with arms, legs and half their faces missing from war. When I see them, I realize how lucky I have been to live a full life to 61, so far. These young men, haven't even lived yet!! So I count my blessings and don't dwell on my illness.
I understand, George! From emails and comments I can tell you have a balanced approach to your new normal. Good for you! I count my blessings, too!
Thanks Pat, I go to a support group, most of the people there are in denial. I find it depressing, makes me feel muzzeled, afraid to talk for fear of offending someone. They tell me, be happy, don't worry. I do my best & I live a realistic life & a very good life but I do know my life has been become shorter. Wish they could all hear from you. Judy
Couldn't have said it better myself, Judy! I worry that when the inevitable relapse comes they won't be mentally prepared. I thought I was but it was still difficult...
Pat,
I am new to you're column but not to multiple myeloma. I was diagnosed in 2007..was on thalidomide for six months and than had a stem cell transplant at Moffitt, Tampa, Fl. My doctor was Dr. Melissa Alsina, very well respected oncologist around the world. Unfortunately, my transplanted only last 1 year 1/2 and i was put on cytoxin for a year and went into remission with velcade every three months, twice weekly for two weeks. i took a break and my proteins went up so now i am on once weekly velcade for a month. counts are good.
anyway, when i first was diagnosed in 2007, I knew that there was something brewing inside me so i was not surprised when my oncologist said it was multiple myeloma.
i have four children and 26 grandchildren and i know they helped in my recovery. i hope that someday this will all be cured. i live my life a day at a time and it is all quality. sometimes, i even forget i have this disease.
Pat, you must have been young when diagnosed..you're pic. looks young. I was 58 when diagnosed. do you know of any MM support groups in my area...Lake Worth, Fl. I would appreciate it if you could let me know or at least be able to talk to people with the same disease. It has been very surprising to me that people don't even know or heard of this cancer. I have lost two very great friends so far.
Thank You, Joann
I was only 51--and that picture is an old Realtor's head shot, so I was even younger when it was taken. Where is Lake Worth? Must be south and/or east of Tampa. I know north and west pretty well. There are 14 support groups and growing in Florida now. That doesn't include combo LLS groups. Must be a dozen or more of those, too. Email me and I will try and help out. Good luck!
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