Myeloma In Paradise: Why Is Cancer So Hard?
A few months ago, a reader named Ginny D asked a question in response to one of my columns. She rhetorically asked “Why is cancer so hard? Not only for patients, but for caregivers, friends, and family? Why, for example, does it seem harder than heart disease or other life-threatening illnesses?”
I think it’s a great question.
I’m sure that almost everybody has had to go through the gut-wrenching experience of having someone (either themselves or a loved one) be diagnosed with cancer. Ouch! That seemed like the worst possible news. The big C, what a disaster!
Why couldn’t it have been one of those “better” life-threatening illnesses, like heart disease, diabetes, or a stroke? I know that sounds harsh, and of course I’m joking – at least somewhat – but cancer seems to be the worst.
This doesn’t make any sense. These are all diseases that cause pain, suffering, and death. Why should cancer be the worst?
Ginny D pointed out that it may in part be due to the fact that many cancers were, and some still are, extremely painful. I think this is pretty accurate. Not to mention that the treatment always seems worse than the cure.
Another probable explanation for this perception is that cancer still seems to be pretty incurable. I always believed that once you had cancer, practically any type of cancer, you were doomed.
This was such a strong belief of mine that I once recommended to a co-worker and friend who had recently been diagnosed with breast cancer that she get her affairs in order and make her peace with the fact she was probably going to die. I am horribly ashamed of this tactless behavior now.
I really wasn’t trying to be mean. I truly thought I was helping her face reality even if I was going about it in the least sensitive way possible. I believed that her death from cancer was inevitable. I believed that anybody who had cancer was going to die from it. If it wasn’t terminal right way, it certainly was going to relapse sooner rather than later.
My perceptions were cast in stone by witnessing my grandmother die from lung cancer in 1978 and a close friend from pancreatic cancer in 2011.
The only treatment available to my grandmother at the time for her stage three cancer was very toxic chemotherapy. She never got better, the chemo made her horribly ill, and she suffered until she died about three months later.
I was only 16, and it scared the hell out of me!
My friend’s recent death was also painful and aggravated by her chemotherapy, which did no good and only robbed her of her last two months, during which she would have been healthy enough to enjoy life.
I was only 49, and it scared the hell out of me!
I can counter those experiences with multiple others in my life involving heart disease, stroke, multiple sclerosis, kidney disease, and rheumatoid arthritis. All of these involved close friends or family, and each of these diseases caused lots of pain, suffering, and sometimes death. Heck, I even had two friends drop dead from heart attacks. However, none of these experiences scared me like the threat of cancer.
These perceptions, of course, no longer apply. At least not to me. Now that I have been “blessed” (huge sarcasm here) with multiple myeloma, I have learned the truth. I had to learn the truth. The perceptions were way too scary to live with.
It turns out that lots of cancers are survivable, treatable, and not necessarily that painful. More importantly, every cancer is very different. Not only is every type of cancer different, but each patient’s cancer of the same type is often very different.
The treatment of cancer has also evolved; it is not always the horrible road of suffering it used to be in 1978. As lots of us can attest to, the side effects of treatment are not only tolerable, but tolerable to the point that we can often lead full and productive lives.
One of the interesting aspects of this change in perception is that I think my disease is harder on those around me than it is on me – at least when it comes to the mental aspects of cancer.
Ginny commented that one of her sisters is so anxious about her disease that she can hardly talk to Ginny. I too have friends who have disassociated themselves from me because they are obviously disturbed by my cancer. We all know people who are very uncomfortable talking to us about our condition.
I think the solution is education. Once I became educated about cancer, I was less afraid.
I don’t know about you, but I now find myself constantly trying to explain to family and friends the differences between myeloma and other types of cancer, or why I don’t have to go to the hospital for treatment.
I try to be patient. I owe that and more to the universe to make up for the horrible lack of understanding I displayed to my friend. If by some quirk of fate you are reading this, Ann, I sincerely apologize for my foot-in-mouth disease. It was entirely caused by my own fear.
Our world continues to change. The diseases our grandparents died of are different today even if they are the same.
We can be less afraid. Cancer doesn’t have to be so hard. Now we just have to explain this to everybody else.
Aloha and carpe diem!
Tom Shell is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. 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 .
Thomas
Cancer is the big boogie man in most people's mind. I too had great fear when diagnosed with multiple myeloma, not knowing what was ahead of me and my family. However, I was determined to educate myself and family and look for the best possible treatment available. Here I am, 5 years since diagnosis, and doing pretty good. Yes I have had to change meds due to my myeloma becoming refractory to the treatment regimen, but the new meds got it back under control. Here is hoping there are always new meds to take over after the other meds loose effectiveness. Fear can be conquered by education and not getting anxious by looking down the road too far. I wish I had a dollar for every time my friends tell me how good I look.
Take care and enjoy the good times afforded us by the meds we take.
Yes! Well said Tom (and Eric above). Cancer is scary. We're not in control. We don't know what will work, what will help, and what will devastate our lives by side effects, not to mention ... myeloma is INCURABLE at this time and our clock is going Tick Tick Tick. But from all that I read, we're one bunch of positive, optimistic warriors, taking on this fight, no matter what it takes! It's almost 6 years since diagnosis for me, and I battle forward always! Thanks for great columns Tom!
Thomas
I think part of the greater fear with cancer is because we have some idea of the treatments being harsh and debilitating without guarantee of remission. If you drop down dead from heart attack (I too have known people in my family do this) you have not the mental activity of worry before as to the 'future' with a life threatening condition. With long term illnesses like diabetes you can go on for decades with treatment / control. Strokes if treated early may not leave permanent disability if you survive the stroke. So on..
We know that many cancers are treatable, but have few cures and treatments are harsh and can be harmful, more so than with the other chronic conditions.
I personally do not see cancer as any more fearful than any other illness, but maybe for some the pain and suffering is a lot more. I think it is the negation in developed society of sickness and death which can occur at any age. No one wants to suffer or die young or need ongoing hospital treatments, but then no one knows how long they will live even when apparently well. Just because ones parents had very long lives does not guarantee us the same, but I suspect that is how we think.
We need to lead fulfilling lives and prioritise our efforts to enjoy what time we have, that is what anyone with any illness should do.
I was diagnosed in late 2013. I did a SCT in April 2014 and last February had a pneumonia/complications scare that put me in the hospital for 13 days. A few weeks ago my wife commented that her hair seemed to be coming back to its full state. I asked why she might have been losing hair, and she said it was probably due to worry. She is a hard, conscientious worker, so I asked what she had been worried about, and she replied, "YOU!" It then struck me that she probably worries more about me and my health (including heart issues) than I do, and it has affected her both mentally and physically. Cancer is hard on everyone.
Aloha Tom and thanks for the thought provoking column. Having known friends and relatives with life-threatening illnesses, and being in a medical family, means that we have to realize that not everyone does live to an old age with no health problems.
It is also Remembrance Day, and we honour those veterans who defended our country, at great risk to themselves. For many years in the past I played my bagpipes at ceremonies on this day, but am not strong enough to do that anymore due to the bone damage I had.
I think that one of the problems with myeloma cancer is that it is a rare disease, as well as being a blood cancer. Most of us patients and caregivers did not know much about it at all before diagnosis. Thus we are not only cancer patients, but by necessity students of this disease.
Good article Tom. Many people don't understand. When they hear the word cancer, they think you're doomed when in fact many are not. If it's caught early, it can in many cases be controlled, and the person has to stay positive and continue with life. Like anything else, get your checkups, take your meds, exercise, eat right, pretty much the same thing whether it's heart disease, diabetes or even high blood pressure. Just pay more attention to your body it will tell you when something isn't right.
Thanks for your column, Tom! While a myeloma diagnosis is life changing, I agree with you and Jack that education can make all the difference in staying positive, being healthy, and moving on with all the beauty of living. It's okay to get discouraged or feel badly, I just try to not stay that way. I wouldn't want to miss out on on the memories that my husband and I haven't made yet.
Best wishes to you all!
Aloha All,
Thanks for your comments. It seems that we are all in the same boat – no surprise – and have learned to come to grips with our diagnoses.
It is clear that what sets us apart from the general population is our education about our disease, which while usually fatal, is often treatable and frequently allows its victims to lead some semblance of a normal life for a while. Not the typical cancer story we all grew up with.
I think this makes us special.
As Julie says above, "But from all that I read, we're one bunch of positive, optimistic warriors, taking on this fight, no matter what it takes!"
And Edna, "We need to lead fulfilling lives and prioritise our efforts to enjoy what time we have, that is what anyone with any illness should do."
I would go further and say that is what anyone healthy or sick should do. We are a unique group. Others can learn from our determination to squeeze as much life as possible from each of our days.
Thank you all for sharing your great outlook and spreading the message of hope and carpe diem!
Thank you Tom. Our family is just coming out the other side of the immediate shock of diagnosis where we had to confront the atavistic fear of the Big C and start learning what it means in 2015 to live with cancer. Because that is ultimately now what we will do for the rest of our lives. We are fortunate in that my husband is young (by the standards of this disease though the grey in my hair suggests are aren't -that- young), healthy, he has all neutral/favourable markers, no co-morbidities and already responding very well to induction therapy. So a few weeks of sheer unadulterated terror, another few months of wrestling with what my teenage daughters call the "wait... WTF? this isn't going to kill dad tomorrow?..." moments, and now we begin an evolution into a family that lives with cancer.
Early days, obviously, but already coming to grips with a few long term changes. Dean and I now accept and openly discuss that we have different time horizons, when we used to blindly and stupidly assume we would both die together instantly at age 95. We yanked Dean off the rat race treadmill of work and pulled him into a forced semi-retirement so that he can stop living to work and start working to live. We also say yes when friends invite us to dinner or the afternoon looks perfect for a drive in the 'stang, because we have decided that 'too tired' and 'too busy' are excuses that no longer apply. Even our girls adapt, putting the phones away and taking 'hug' off the list of forbidden activities.
Every day since his diagnosis mere months ago we meet another person living with cancer -- a patient or a caregiver. Every single day, I swear it. Breast, prostate, melanoma, myeloma, colon -- neighbors, friends, coworkers, yachties. They are absolutely everywhere. It's like we have joined this enormous unseen but ubiquitous club. I take heart in the success stories we read here and see all around us. These are not people dying, these are people living.
Dear Tom,
Thanks for another well-written column. You successfully captured the paradox of having a chronic and incurable disease. I really related to how you tire of having to explain and re-explain the course and treatment of this disease. The comments this week are encouraging, thought provoking. One reader's comment: "These are not people dying, these are people living."
Maureen
Mahalo Tom
Very insightful article. It is a paradox that friends and family can easily handle the brother's diabetes or the mother's heart disease or the father's stroke but are paralyzed by my husband's multiple myeloma. Like you we try to educate them on this very complex cancer but it is not easy. Most people seem to understand a cancer that is more specific like breast cancer or prostrate cancer but multiple myeloma throws them for a loop.
Since we are still new into our myeloma journey (16 months) we are a bit fearful of what the future holds for us. Most days we are very optimistic but then we read something in the Beacon or talk to some one at the doctor's office and trepidation creeps in. As you menioned, cancer is more individual than many give it credit for and as a result we try to balance the statistics with our own circumstances.
Thanks for bringing up an interesting concept.
I think that people are more afraid of cancer than of other disease because it is perceived as an unpredictable monster. And it is. In just one year, for instance, it destroyed the life of my mother’s physiotherapist, who was 48. From healthy, fit, virile, happy to be alive and efficient to dead.
Remissions can be long or short. They can give the impression that a person will be in great shape for a long time, and with a twist end suddenly. This is what happened to me: last July I was in great shape, biking, swimming, running to catch the bus (buses always have you run in Rome, the drivers are all neurotic).
By the end of August I was house bound, weak and in pain. I had a terrible inflammation of the nerves of the hands, which the doctor said sometimes occurs as part of the "earthquake" of the relapse. I still have it but less painful now. I was hospitalized twice with various problems and I lost too much weight. I started lenalidomide (Revlimid), which gave me horrible nights at first, but thankfully after just one month my values were better and the doctor switched me to 15 mg instead of 25.
The point is: can one be serene seeing that things are going the right way? No. That is truly the main problem with cancer, you can never relax, you know that you are dealing with a monster, and this is the difference with the other diseases you mention. My perspective might be pessimistic, but what can you do, we Europeans are bitterer than you guys. You do very well to have a positive outlook, I just don’t succeed.
Aloha Annamaria,
I'm so sorry to hear about your recent difficulties. I do understand that I sometimes come across like I have my head stuck too far in the "positive vibes" universe. Even though it sounds that way, I also have my difficult times.
You are so right that things can go from great to horrible very quickly. Its easy to be positive when all is well.
I very much appreciate you sharing how you feel as I can guarantee you are not alone. My hope is that readers of these articles and the comments can find some understanding of what they are going through.
In my opinion, the "Gold" to be found at the Beacon is in these comments and in the forums. It is OK to be more pessimistic; maybe its just who you are. Know that you are not alone.
I sincerely hope your Revlimid treatment helps you. Even though I don't like it, it is helping to keep me alive. For me, for now, that is enough.
Ciao!
Tom
To Toast (via Thomas)
I know from personal experience that a cruise in a convertible 'stang is good medicine against myeloma. I have a 2006, white GT stang with red leather interior, and I feel great after a sunny day cruise with my wife. Ford should bottle the feeling, they would make millions.
The article by Tom Shell is interesting, as well as the comments. I will add a brief comment, hopefully to offer encouragement to others.
I was diagnosed with multiple myeloma in 2004 about one month before my 60th birthday. When I read about multiple myeloma and what I might expect in the days ahead, I thought my life was about over. I have been so fortunate to have good doctors and drugs for treatment and have escaped most of the horrible effects of this disease so far, now surviving about 11 1/2 years. Other than when recovering from surgeries and chemotherapy, I have not suffered much. At 71 years of age I think I am in the same arena as most; I don't know how many more months or years I have left but I plan to enjoy my family and friends for as long as I can. I don't feel cheated now like I did in 2004.
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