Pat's Place: It's Time To Stop Denying The Elephant In The Room, Death And Dying
As a former drug and alcohol counselor, I was trained to identify and deal with the “elephant in the living room” In other words, the painful reality that everyone would talk around but rarely face. It might be a family member's alcohol or drug use, domestic violence, or incest.
Denying a horrifying reality isn't anything new. But I never expected multiple myeloma to make the top ten list! That is, no one ever wants to discuss dying from myeloma.
Well, I want to – no, I need to – talk about death and dying.
Hearing your doctor discuss median life expectancy numbers is never easy. Nor is reading about it on the Internet.
When I was first diagnosed with myeloma, the sudden realization that my time on earth is finite knocked me down and wouldn't let me get back up. But with time, I climbed back up and started to live my new, near-normal life.
I started to write “with the help of friends and family,” but that would be disingenuous. Truth be told, few if anyone around me helped me deal with my new-found mortality, elevating it to “elephant in the living room” status.
Living with a terminally ill cancer can be tough on everyone. I get it. And denial is a ruthlessly effective coping skill. But using it indiscriminately isn't healthy. At some point, the primary actors in this life-and-death play need to admit that everything isn't OK.
I may get it, but that doesn't mean I understand it.
For example, to say a myeloma patient is “terminally ill” isn't allowed in myeloma-speak. As a matter of fact, I don't think I've ever heard the phrase used in our world.
Why? Denial, of course! For a majority of us stricken with multiple myeloma, much of our lives are spent “looking normal.” It's the “But you don't look sick!” syndrome that makes it so easy to be lulled into a sense of complacency.
The irony of all of this is that most people are 70 years old or older when they are diagnosed with myeloma. One would think someone who had lived that long would have come to grips with their mortality, right? Yet even older patients and caregivers who have had years to adjust still can't seem to discuss the inevitable calmly and openly.
Which brings me to another reason our denial is so insidiously enabled. It's the wildcard that keeps survivors, caregivers, friends, and family members hanging on: open-ended hope.
Anyone who gets out to a support group or follows patient blogs or columns hears inspirational and hopeful stories about exceptionally long-lived survivors, some that live decades. Anyone grasping for a life-line might ask, “Why can't that be me?” And this isn't an unreasonable question. New novel therapies are allowing some of us to live two or three times longer than our myeloma brothers and sisters did just a few short years ago.
Anyone who reads my writing knows I’m an optimistic guy. And yes, I will admit I hope I'm one of the exceptionally lucky ones, too. But to deny the reality of our condition isn't fair to anyone. It may even make those around the patient sick — and the patient sicker.
The same folks who remind you how you don't look sick are also the first ones to change the subject the minute a patient or caregiver needs to talk about dying. No surprise there.
But what does surprise me is the way fellow patients often do the same thing. Shutting down an important life-and-death conversation doesn't help the person who needs to vent or decompress, and it may not be good for the one who won't let them share.
There’s an unspoken rule in many support groups that talk about death or dying is verboten. Perish the thought that someone wants or needs support in a support group! Sounds pretty silly, doesn't it? I think so. But on the flip side, it isn't fair to others in a group who still aren't comfortable discussing the elephant in the living room.
My advice? Support groups can do what I've done here. Let people know in advance that the topic of conversation will be about dying. Then those who aren't comfortable talking about the subject can opt out for that meeting. Or schedule a smaller meeting or coffee group to allow those who need to talk things out the opportunity to clear the air and get the help they need. Having an experienced therapist's phone number at the ready for interested group members is a great idea. Experience tells me most of us need counseling from time to time, ideally from a trained professional.
I’m fortunate that despite some early challenges, I haven’t had to struggle with depression. But depression is a common emotional side effect that accompanies a myeloma diagnosis and treatment. With therapy that may or may not include medication, most can adjust and feel like themselves again. Denying it only makes things worse.
On an individual level, patients need to get past the concern that discussing death – and what happens to loved ones left behind – might upset those closest to us. Hiding how we feel from caregivers does them a disservice. But if they aren't equipped to discuss reality, a patient (or caregiver) needs to find someone else who can help.
Myeloma patients and caregivers who refuse to acknowledge “the elephant” are robbing themselves of a life-affirming experience. It is so freeing to accept one’s mortality.
I no longer fear death.
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 .
Pat, Thank you for this column. I have been thinking of my Mm as more of a chronic illness until these past few months. Right now I am at UCSF fighting for my life. I still plan on living a while longer,but that is out of my hands. It is going to be hard to get my family together to seriously discuss end of life questions and financial matters. That elephant in the room is so easy to ignore.
Pat- you are "spot on" here in my opinion. My wife and I and my family discuss my disease, treatments, and prognosis often enough for us to stay on the same page. I think it is both critically important and helpful all around- also, having a letter of instructions/suggestions for after my death is crucial in easing the way for my wife and family....what are the account numbers and passwords for everything?? Who needs a copy of the death certificate to straighten out beneficiaries, etc.?
And the prognosis dilemma never ends, does it? A prognosis is just an educated guess at a point in time, and should be updated with every change in lab numbers, or drug protocols it seems.
So, thanks, and keep on writing!
All the best to all,
Eric
Dear Pat;
I read your article a few hrs ago and closed it and walked away. But what you said has been following me around. It is my mother going through this as the patient, but we, our family are going on this journey with her.
It is so hard to find the right words. The right time. The best thing to do. You wait for signs of readiness for these discussions. You hold your knowledge close to your heart because the person who used to want the doctor to explain the names of each instrument used; now wants to know nothing. Part of our team is sunshine and roses. Then the pragmatists.
The doctors try to be positive. The upping the chemo to a group of 3 speaks volumes. How do you say that the chemo will only help for so long. Then it wont. The blood transfusion will work for a few days/ weeks, then you will need it again.
No one wants to say what everyone is terrified of. What happens...when.
When you reach out to groups, you still find no concrete answers of time frame and real prognosis. We are far away and want to be close BEFORE the time comes. With all the ifs, ands, and buts; we may never know when that is.
I respect and salute you for your bravery in broaching this subject. Good for you...........and ulitmately good for us too.
Thank you. Kirsten
This is a wonderful message for EVERYONE, as we are all (terminal illness or not) subject to a "finite" amount of time on earth. I understand not dwelling on death or dying, but since it is an inevitable part of our human existence, I'm surprised that so few people "plan" for it. Thank you, Pat!
Pat, I have a lot of respect for you. But people choosing to ignore the elephant in the room for a reason - a good reason. Yes, there is a practical need to discuss the earthly matters related to dying and death. Everyone does, healthy or sick. But beyond that, why burden your days with dim thoughts? If you can live for ten years, you want that ten years to be filled with as much fun and happiness as possible, even if the fun and happiness are made possible only by looking past the inevitable.
The elephant in the room is real not just for MM patients. It is inevitable for every living person. If the healthy chooses not to discuss death during cocktails, why is the sick obligated to tear his wounds open?
Living day to day and enjoy what you have are not just slogans used to shield the reality. They are not conspiracies among patients and their caregivers to avoid the somber talks. They are the only way to live a life, for the healthy and the sick alike.
THANK YOU! I needed this one for real. This is what I think about alot lately, and while my children listen and know my wishes my husband dont want to talk about it (this bothers and stresses me). I plan on being here alot longer and just received my 2nd BMT in Nov. 2 within in a 13 months time period and I do believe this one has got me under control. I am not in a support group and reading your stories and thoughts are my therapy. I can relate to everything. Again I thank you Pat. Many many others and I look forward to many more years of reading "Pat's Place"
Hey Pat, as usual a great article. Your last two sentences says it all. Whenever I discuss my impending death with others, they say that they are praying for me and I appreciate that. Prayers are powerful. The only thing that bothers me is that constant thought that emerges from my brain each day, reminding me that death is imminent. Yet, I try to argue with that thought by saying to myself that everyone is dying, not just me! So, like you, I have accepted that fact and I do not fear death.
Keep up the good columns and God Bless
Thank you so much for this article. Just today as I was doing my 2 mile walk I was thinking/planning to write something asking for a place to talk about death, dying and a realistic pragmatic discussion about these topics that seem to be so forbidden,unacceptable. I can be happy, grateful for each day. But I also know that I will not reach the 92 as the women in my family do. In some ways I am grateful for this. I keep hearing about the 10 year, 20 year remissions. But they seen rare, especially for High Risk which I have been told I am. And I don't see the point of putting myself through years of chemo, etc. feeling tired and worn out for a few more months of life. And since no one talks about what the bad days are, it seems to be left to imagination. People at the treatment centers tell me I am the most positive person they know. And I am. But I look at death as a very important part of my life and I would like to spend time now preparing for it in a spiritual as well as practical way. It would help a lot if I could find other people who are interested in discussing this. I have had a SCT and am on maintenance. But I constantly question what I want to do next.
Thank you, Pat, for writing this column. I am perhaps in a different boat than many, in that I don't have children or a spouse and my parents have already passed. I'm not particularly close to my siblings. I have many friends, but there is no one who depends on me, or on me being around, so I came to acceptance of and peace with my mortality fairly quickly. I can only imagine how hard it is when you have young children... I am also a Christian, so I look at death as the portal to Heaven. Impossible not to look forward to that with hope and joy, rather than dread. Everything else in between is just temporary.
My grandfather died from this disease, so I can't say I am looking forward to the disease process (I am currently smoldering, high risk), but I'm also not afraid of dying. My friends have been great about talking about anything I want to talk about related to the disease and I have been free to face the terminal aspect of the disease without feeling guilt or pressure. I know that I will fight the good fight, but when my quality of life is no longer where it needs to be, I'll be able to let go without guilt or regrets. There is incredible peace in that knowledge and that freedom.
I just returned home after a long day of tests, including a PET scan. Then I traveled an hour across Tampa for my Velcade infusion. I'm exhausted! I sat down at my computer to try and hold my head up long enough to check a few emails. But reading these comments has re-energized me! At this point it is hard for me to respond to all of your comments. Just know I have read them and you have helped me develop deeper insight into a troubling issue.
My husband and I often do speak about this topic, particularly when as you stated we hear averge years of survival.. However, for me, his careregiver, I can't seem to process the whole idea of his dying. Am I so in denial that I have put up a wall, protecting myself from the reality of Myeloma? I know the elephant is in the room but I do not want to acknowledge him. Should I? I am doing just fine and will surely see him when he steps on my foot..OUCH!! For now, I am ok with going about my life day to day, loving him and living life, savoring time and just being in the moment. That's just the way it is for now
Great topic! I do not fear the inevitable-death. My family on the other hand change the subject when I bring up the plans of my final days. I am 9 months post atologous transplant. Numbers are holding. I fear for them when I am whisked away. If they do not talk now the flood of emotions or the turning in of emotions might hurt them deeply. Your column comes over our shared e-mail so I am hoping the conversation begins. God Bless!
Hi Pat,
We have had the elephant dancing on our kitchen table (probably doing a twirl and poking me in the eye at the same time) and now it has been sent outside.
Two years (Feb) ago I was informed there was to be no more treatment and essentially given a time frame of 18 months at most. I certainly cried that day. Given my circumstances I think the Drs prognosis was realistic. So the elephant was well and truly stepping on my toes - luckily I have a bit of PN so it wasn't as bad as it could have been! So counsellors became involved, I set up meetings with them for the children (8 & 10), discussed with my husband where I wanted my service to be (and caterers - I love food). I would tear up trying to choose songs. I got passports for the children to get ready for our big trip overseas (while I still could). We also informed friends and family - it was a very emotional time. One way I cope with things is to write really crappy poems, excuse my indulgence but I have included some lines from the one I wrote at this time.
So how do I tell my children
When I look them in the eye
That there's no more chemo
And I will likely die
But Mummy I dont want you to go
Surely that's 10 years or so
I love you so much & I want you to be there
Mum, I know he tries, but Dad CAN'T do my hair
How you going to teach me all that you know
Yeah, and you promised that you'd show me how to sew
I wipe the moisture from my cheeks
Take a deep breath within
I think of my family and their future
... My chest inflates again
They tell me that its terminal
But how longs a piece of string
The thing is they don't know me
And
I AM AMAZING
The Doctors/Specialists then changed their minds! (So we are not going on the overseas trip - not at the moment kids)
So here I am 2 years on after an allo and in remission (I believe it to be complete). I view this part of my life as a bonus and when I look out at the wedge tailed eagles soaring above my house I think what a fantastic bonus. Yeah death is still waiting and I get closer to it everyday BUT so do the rest of my family.
Pat I related very much to your topic. In fact I have been trying to have this conversation with friends and family just recently. No one wants to believe that you are going to "die" any time soon. It is a topic to avoid at all costs. I realise that there are no guarantees about the progression of this disease and so my goal is to travel somewhere every year - having organised a reverse mortgage to do so and to carpe dium - I certainly do not want to die yet and don't like thinking about "how I am going to die" however did ask the nurse at the last support meeting " how does myeloma actually kill you?". Even she looked rather uncomfortable with this question. I have been thinking about what songs I want at my funeral (not that I dwell on death) but I guess that is one advantage of having a disease such as MM that you actually do have time to get "your house in order".
Thank you for discussing this - I will forward your article on to some close friends. I was diagnosed two and a half years ago and I am nearly 65. I retired 6 months ago and am enjoying life and doing a few things - not dwelling on my disease but acknowledging that my life span is reduced. I hope that I can reach 70 however it is in the lap of myeloma!!
It seems clear from all of your heartfelt comments that there is a real challenge ahead of all of us. But identifying it is one thing. Doing something about it will be much more difficult. How about I work on this and come up with some real world suggestions that might help us help friends and family work with us--together. Isn't it time we get rid of that big elephant? Takes up too much space, don't you think?
And Libby, your story is amazing! Good for you!
Hi Pat...thanks for your article. It is a difficult subject to broach, mortality, but I think that most older people have found a way to come to terms with it. My parents and other friends who are now in their late '80s don't talk much about that, although of course they do know that they are reaching the upper years of their lives. I think that they are very gracious not to worry about it too much, at least not to dwell on it. They have pretty much put their emotional and financial affairs in order at that age.
Of course the younger one is, the worse the shock of a diagnosis that is said to be terminal must be. i admire the bravery of those who are young by anyone's standards and must deal with that, as well as treatments, financial concerns and family matters too! I just hope that with the advances being made in myeloma treatment and research, it will become more of a 'chronic disease' for many people.
I remember that in the first year after I was diagnosed four years ago, one friend passed away of pancreatic cancer, two of heart attacks, and another from H1n1 flu (she was already immune compromised). Their families have had to carry on without them since then. That made me realize that I have been given the gift of life...for how long nobody knows, but at least am doing well now. I look to the future optimistically, but also realize that it is time to be very organized and not leave a big muddle for my family should I fall very sick again! (Easier said than done!). And my husband and I also take trips and enjoy life, since we are not postponing what we might do in our 'golden years'...we are starting to do those things now! In our early sixties now, that makes sense to us.
Pat, thanks for courageously creating this opportunity for the MM community to discuss this often difficult subject, i.e., the reality of our TERMINAL illness. And I think most would agree that when such a diagnosis happens to "younger" folks (younger than say, 65) it's a particularly difficult loss to process. Feeling that life has been unfairly preempted and that years have been stolen is a common and justified feeling. To further complicate this emotionally traumatic experience, it often feels like one IS processing all of their feelings alone because, well, in one very real sense, we ARE doing it alone. Plainly stated, no one can actually go with us on this journey towards our inevitable demise. Sure, we can be supported and loved by those closest to us, but still, we must travel this journey toward our final days, like everyone else, pretty much alone.
Of course, when you put yourself in the shoes of those who love and care for us, we can begin to understand what a VERY difficult reality it is for them....to allow this terrible pending loss into their lives. Knowing that they are going to experience the pain of losing their loved one is a very heavy load to carry indeed! So if they choose to live with a bit of denial along the way, well, I think that should be expected and understood by those of us who are succombing to this horrible disease. Although we are the ones who are actually riding this rollercoaster toward an rather unpleasant end, it is our loved ones who have to stand helplessly on the sidelines watching us ride this journey up and down and up and down....and eventually, just DOWN. That can't be an easy thing to endure!
Regardless of one's role in this life and death play, we are all human with all the emotions that go along with sentient beings. However, I believe we can help our loved ones come to terms with THEIR feelings now by talking gently, but frankly, about what we are experiencing within this TERMINAL illness called multiple myeloma. I have observed in my own experience that by talking with family, REPEATEDLY, about both the HOPEFUL aspects of future treatments, along with the reality that MM remains a UNIFORMLY FATAL disease, they seem to slowly begin to allow the reality of it all to "sink in".
They, we, will be continually processing feelings along the way...sometimes we will be in BEAUTIFUL synch with each other and at other times we will seem PAINFULLY out of synch.
And so it goes, it seems to me, in this journey we are all on....in our love of life....and our lives in love.
Best,
Steve
This whole discussion has put me into a funk. I seem to be the only one other than Ben. I was diagnosed in my forties without any co-morbidities and my treatment has been going well. My attitude is that I will beat myeloma. My financial house was in order prior to any diagnosis. Perhaps, I have my head buried in the sand like a proverbial ostrich. I believe I will be cured and see my kids graduate high school and more. If I didn't have this attitude or frame of mind I simply could not get out of bed in the morning.
I always just say to myself,"no one gets out alive"! Or "we're all gonna die, some sooner,some later."
It helps me cope and really ignore that elephant in the room.
Pat,
Thanks for writing this. It's right on. I know during my off weeks, I forget about my MM and act like I'm perfectly healthy. I feel good, but the MM does hang over all of our heads. I think going in for maintenance chemo is a stark reminder. But, like you and others, I plan to be around for a long time. Yet I am also realistic. Talk about two hugely opposite thoughts.
Pat ,
Thanks for such a great column on a subject a lot of people don't want to talk about. I am a caregiver for my husband who was diagnosed in 2009 at age 52. We have 2 children, had full time jobs (we are both retired now due to MM.), a business, very full lives. When he was dx, the dr. Could barely say MM much less tell us it was terminal. In fact, no doctor, nurse, or health care professional has ever said the word terminal. It is "incurable but treatable". We all know its the same thing. That latter phrase seems to be easier to say and easier for people to hear. When my husband was dx we immediately updated our will, living wills, etc. Death is difficult to talk about as many people have said in this column. We felt having all our affairs in order and the way we want for our children and me was priority number 1. Not talking about it will leave a lot of things to chance for family members. We have discussed the elephant in the room. I feel like our actions have put the elephant in the closet. The elephant is still here and not leaving any time soon. But we have controlled all the things we can. Someone said having cancer, especially MM, opens the door to death. We all know we are going to die, but imagine the doorway to death with the grim reaper standing next to it. The door is closed. When you have MM, the grim reaper has his hand on the doorknob and is standing there with the door open. Not pleasant to think about but an accurate description. I guess we are realists. Control what you can, live life fully and hope for the best. I hope our experience will help someone else who reads this. Keep up the great columns!!
I hope those that read my columns take the time to go back a few days later and read the amazing comments the readers leave. I don't know where to start! Working backwards, I love the "grim reaper" analogies I read. First time I ever heard the "hand on the doorknob one used." I reader once described how he felt like the "Sword of Damocles" was always poised above his head. How poetic and difficult all at the same time. But tragedy brings out the best and worst in us, don't you think? Steve, thank you for your heartfelt comments. I'm sure readers appreciate the time you put in to compose those. But I would like to address Terry directly. His comments (and Matt's) epitomize the dilemma we all face. There isn't anything wrong with expecting a cure to come along if you can keep your body healthy enough to make it. At least a "chronic cure," where drug combinations manage to keep us around for decades, similar to a lot of the lymphomas. BUT, I know dozens of survivors that feel like you do that have relapsed. A very humbling experience! If your not worried about it, DON'T! As long as you are in a position to get the best possible care if and when you need it. I look at time in two year increments. That's it. Nothing past two years interests me. Why? Because if next week my myeloma specialist tells me my drug regimen is continuing to slip, that may be all the time I have left. More? Probably! But maybe not. I have lots to do if I only have two years. See the difference? Keeps me getting out of bed--have too much to do! Glad your approach works for you. Just letting you know there approaches that work for others, too. Good luck to you all and I'm glad I can help!
Wow, what a downer for the recently diagnosed like me! I am 58, and I never thought i would live forever. In fact, my 13 year old son died three years ago. All one has to do is read the obituaries and see that people die at all different ages. That is nothing new.
But since my Mayo Jacksonville doctor is optimistic, so am I! Why not be? God (or whatever you call that being) has always been in control. The present moment is all we know we have, and we delude ourselves if we think otherwise.
I am with you Terry and Ben.
Fear of death, and the promise of life everlasting are the motivating reasons behind all religions, and are the fundamental issues that we as mortal beings must all come to terms with.
Regardless of what those terms are, we all realize that we cannot live happily or effectively from day to day if the full awareness of our impending doom is foremost in our thoughts.
I have learned that once I resolved the issues of what becomes of me after death, and what will happen to my world when I am gone, there is little to be done about it other than doing my utmost to survive.
As a result, I have become adept at denial. This is not to say that I deny the fact, but rather I deny it a significant position in my conscious world.
I keep that demon locked away from my thoughts, where it cannot overwhelm my joys with sorrow.
I know that someday it well escape, but for now I will not allow it to sadden the few years remaining.
There is terminal and then there is controllable. With a current median prognosis for the recently diagnosed far exceeding ten years looking back - there is every reason for LONG-term optimism for the newly diagnosed who are standard risk. A diagnosis is not the same as terminal any more.
Thus to entertain the grim reaper prematurely is obsession and self-wallowing, as is telling your children and hence prematurely dimming and encumbering the brightest part of their lives.
But I recognize that once one has a transplant destroying your bone marrow - becase transplants only really help about 1 in 8 people and far from a red badge of courage are more typically a red badge of destruction - and then relapses, YES: the reaper is in your building.
And regardless of health, one should always have their affairs in order - meaning at least having have a will, power of attorney, and medical proxy. I do.
So I don't see the point of this advice; I reject it. If I see the elephant, I will deal with it then - but I have chosen to live my life normally and fully.
And to that end, I have also chosen a new medical path - one where the objective is to lower drug doses as much as possible to minimize toxicicity. The current view of many practitioners with patients who are ostensibly healthy (like me) is to pump them with high-dose drugs so long as they can tolerate it. As one example, I (like so many others) take 25 mg revlimid. Imagine my surprise when I recently saw Dr. James Berenson and his staff, who were shocked that I was on such a high dose. They want me down to 10 mg - and dammn right I will give that a try. He also provided an alternative to dexamethsone - which messes me up on the high and down side most of the week. If you are trying to keep your disease stable, why would you prod it with the highest doses of poisons?
Yes, I am a bit pissed off - and I am not even on dex.
I respect where Pat is in his disease, as only he can be exactly there. However, I would not jump on board of this grim reaper train because he thinks we should join him. To assume that not openly talking about one's possibilities of death means one is in denial is very inaccurate. I am a caregiver to a 6 year mm patient with aggressive and refractory disease. Certainly, we have our affairs in order, but we are choosing to embrace life in all its miraculous possibilities. The grim reaper may have his hand on the doorknob, but the deadbolt is locked and we have a shotgun!
Hi thebottomline2012, I like your style. Your last line was funny. I would like to hear more about Dr. Berenson and his approach.
Hi Denise H, you go, girl! Love your attitude and your last line, too!!!!
Hi Denise
I had read a lot about Berenson's approach and seen many of his videos. He KNOWS about the field, and all its drugs, and all its possibilities. Notably, 10-20 years ago he was a HUGE advocate and practitioner of transplants, but then saw the light.
He also ascribes to the view of "do no harm" - and this is reflected in his dynamic, low-toxicity approach. I have to keep my bone marrow in good shape to stay in the game - and I think his approach is a good way to get there.
I thought he would come across as dogmatic or pretentious - but to my pleasant surprise, he was incredibly down-to-earth, warm, funny, and not snobby. And he took his time to answer all questions and concerns - and remarkably was even ON time. He has seen thousands of patients over 30 years - about 150 every week - and has a great track record; my wife commented on how healthy and "happy" the patients in his waiting room looked - and I agree.
He told me that his current median survival stats are NOW 15 years, and he has no reason to believe that looking ahead, it will be 30 - and that works for me: I am 50. And the most recent studies DO suggest that sequential therapy does offer a survival edge.
I think his exceptional communication skills and bed-side manner is a reflection of his maturity: he doesn't have the cold clinical edge of a new doctor trying to prove him- or herself.
He also thought that my ~ 90 percent response with a two drug regimen was excellent (current M-spike about 0.5) and that there was NO need to shoot for zero or submit to agresssive therapy to drive it down further. He said he has many long-term survivors with 3-4 times that level. That surprised me a bit. Contrast this with my current MD (with only two years experience) at USCD, who would LOVE to push me to a transplant.
So I like him - and I wasn't sure that I would. But I also live about 100 miles away in SD, so I will find a new primary doctor locally who will work with Berenson as the Quarterback. And I will see Berenson about every two or three months - as he suggested.
Pat
Thanks for the article. Wow was there a lot of feelings laid out by so many in our situation. For me I accept the fact that our lives may be over in 70 or 80 years. The Bible writers recognized that several thousand years ago. So little has changed for us, in reality. On his sermon on the mount, Jesus said to live one day at a time because each day has its own issues to deal with. That does not mean we don't plan for the future, but dwelling on our future end will not make us live any longer. In fact we cannot add "one cubit to our life" by worrying about what will come.
Where I live, I go every 4 months to my pain management doctor, who has his office in the St. Joseph's Hospice. It is a wonderful facility where people go to pass away. Going there, and visiting individuals who are in their last days is in fact, comforting - because I can see what physical death is like, and also the grieving process that loved ones go through. Like you I am not afraid to die. I believe in a loving God, who promises a resurrection. He proved this true in the case of his own son, and I have faith that he wii keep his promis for the rest of us who pass away in death.
Thanks again for bringing up this topic and for all who participated through the insightful comments.
BTW: It is not that I am afraid to die. To the contrary, I am not religious and regard death as pure oblivion and nothing more. And have all been dead already forever.
I think the concept of death is much more frightening than the process itself.
But enough of the philosphical slant. What frightens and saddens me are the implications of a parent's premature death, especially on their (young) children. A child needs a father, and it is cruel to take that away. And financial and other consideration are always in the foreground.
Hey Gang! Love the input, thoughts, and sharing. But when did I "board the grim reaper train?" Really? Just because I accept the fact that I could develop pneumonia while neutropenic as a result of continual treatment and pass away like so many of my fellow myeloma brother's and sisters? A couple of things. Six years out is a lot different than someone who has been diagnosed recently. The wear and tear on our bodies is significant. I remember a member of the first support group I joined basically being eaten alive inside-out from taking thalidomide for five years. I'm not sure which he died from--thalidomide exposure or myeloma! I'm optimistic about my future. But I'm a realist, too. You can be both, which was the point of my column. But if any of you "I'm going to live forever" fa-la-la-la gang think people don't die everyday from multiple myeloma, you aren't dealing with reality! Four of our support group members died in a ten month period last year. We have 30 or so members, but that includes caregivers. So figure 16 patients--and 4 died. Yes, most were older and several had serious co-morbidities. Still, you do the math... To boldly say, "That won't happen to me!" I feel is disrespectful. And yes, it is a dex day!
As I mentioned, my sig other is a 6 year mm patient. He has faced death several times during the course of his disease. We are well aware that this is no walk in the park and we do not live in fa-la-la-la land. Pat, your posts have been all over the place. People will address the issue of death in their own way, in their own time. Some will need counseling. Many will not. Most of the mm patients who have any knowledge about the disease at all know how life-threatening it is. We don't need to be beat over the head with it.
Fair enough, Denise! I'm all-over-the-map intentionally. These aren't easy black and white issues. I'm sorry your significant other has had such a difficult time. But some survivors haven't. My goal is to try and facilitate discussion. I'm ecstatic that so many have taken the time to respond and share their perspectives whether they agree with me or not. Some important insight here, so I feel my probing has been constructive. I certainly don't want to offend anyone. If I have pushed to hard, and you felt singled-out, I apologize!
Wow, that was a fun read
As an MM patient, I really appreciate people who are comfortable enough to let me talk about death. Not many are. That said, for me, being at peace with death, is how I take the stress out of dealing with this disease. I don't have that hanging over my head, so I can live each day to the fullest. Strange, but that is one of my best weapons against this cancer, living with as little stress as possible. (5yrs. cm-no maintenance) I never thought about how blessed I was to have a mate that I can be so open with. I can see if you believe that death was final it would be something that would not bring much peace. If that is the 'crutch' of my faith in my God, wow, that is a great crutch.
This will be a good reminder for me to let others talk about whatever they need to cope, and I just become a better listener.
A dog and a human both have bone cancer. Both have 4 months to live. But to achieve 4 months of life, they both need one of their legs amputated. The human has the unfortunate ability to ponder his shortened life; what is he going to miss?, what will his kids do after his death?, his grand children will not know him. He is on anti-depressants and pain killers, everybody talks to him in hushed tones as he recovers in his hospital bed for 3 weeks. Some friends no longer stop by because it is so depressing and they don't know what to say anymore. With only 3 months left and only one leg, there is no more joy in his life.
The dog does not ponder. 4 days after surgery, the dog wants to run and play. He is so incredibly happy to see everybody and be back in his yard. He looks back once in awhile at where his leg used to be, licks the stump, and then runs as best as he can. The dog doesn't care too much about the pain. He doesn't know he's going to die in a few months. All he knows is he is so incredibly happy to be back home. Sleeping by the fire after 4 days at the veterinarians, he considers himself a very fortunate dog!
I want to be as much like the dog as possible.
I know what's probably going to happen to me (and my family) in the next few years, so I make intelligent decisions about our finances and my treatment options, but if somebody wants to talk to me about my death, sorry for being selfish, but I'm not interested.
And similar to other posts here, 1 year after I was diagnosed, a friend was diagnosed with uterine cancer and died 6 months later. My son's best friend died in a car accident. We are all going to die, but it is not guaranteed that us MM patients are "next in line".
Pat--brave, thought provoking article. But I'm on the other side on this one! Thanks for writing. I hope my dog-human analogy wasn't too off the wall!
I'd also like to add that I respect everybody's way of dealing with cancer but for me a slight head-buried-in-the-sand approach is going to be the best.
I'd also like to add that there are some really thought provoking comments on this column. I stayed up for hours last night digesting them.
Laura M--keep it up. My wife (caregiver) also operates in the same manner as you and it works best for our family. When she thinks about "it", well...nobody is happy-ha.
Christine--I also get comfort from "nobody gets out alive". It's such a simple thought, but it's also, in some ways, comforting.
Frank H--"adept at denial" That's a great line-thanks. I think I have mastered that too.
Long time listener (dx’ed at 42 16 months ago), first time caller. My one liner is Stage I, status post RVD induction, Harvest, and an m-spike that is now all but gone on maintenance Rev. What next? Who knows, and I am a physician who is up to his fifth opinion from major myeloma centers.
The reason I write is that I am with Terry L/ others. As a physician who treats hospitalized patients I have frequently seen a patient, walked out, and thought to myself, "The Nile is not just a river in Egypt". There are three geneses of my mental gyrations about denial.
The Good: Many with cancer almost find solace in the fact we are all going to die. In effect we are all in denial. So our clock’s accelerated… collectively yes. Life goes on until it doesn’t for all of us, time to move on, and live today. I personally believe a healthy dose of denial is the best medicine.
The Bad: I call this “Ignorance is bliss” until it isn’t. Cancer doesn’t get ameliorated/ cured because you ignore it and use hope as a treatment modality. It takes work and resources. And it sucks. But most of us have good options to extend good life if we don’t ignore what must be done. And hope that cure may exist one day isn’t completely unfounded. As an aside, it is more than a little disheartening to see those who have the will but limited resources.
The Ugly: Where I will never be because it is what I see all the time. Oncology can be legalized torture that even Dick Cheney would rebuke. When my number comes up I will accept; my family and close friends are all on board. I have a plan on how I wish to wind things down. Way too often I see those (often at the behest of family) who will go blindly into the night for the pot of gold at the end of rainbow that everyone knows never existed. And at such a cost. I try not to judge, but “It Ain’t me, Babe.” I am thankful I have this insight and I wish it could be more widely shared because there would be a lot less suffering if there was an APP for this knowledge.
So it is merrily I paddle down the Da Nile. No other choice. May the currents carry all of us for a long time.
If talking about death is not for you don't read the following.
We all know that MM is a terminal illness, well at least here in Australia that is how it is classified for insurance purposes. So right from the start the possibility of dying from the disease is apparent. If getting slapped in the face by a wet fish didn't get your attention having the elephant land on your toes probably will. On paperwork seeing the terminal condition box ticked and the unlikely to survive the year box ticked is certainly confronting. My local oncologist warned me before giving me back the papers. Should I have ignored that particular information? Or should I have tried to find a solution? I believe knowledge is power BUT it is how we deal with it and what we do with it that is most important.
Talking about death and the arrangements with loved ones was an extremely emotional time. It really only has to be discussed once. Now we can get on with the rest of our lives, making the most of what we have, doing what we can. I am a positive person and try to see the silver lining of any grey cloud (although sometimes I require a strong magnifying glass to see it). Have their been benefits for our family because we have discussed my possible death. Definitely - but of course it is hard to measure. Wallowing is not my style unless it involves a mud pack at a day spa or a chocolate fountain!
Everyone's MM journey will be different as will their surrounding family and friends so how you and your family deal with the issue of death will be different. After talking to my family about this ongoing discussion they all said that children are more resisilient than we think they are. My husband thought that our children were coping better than some of the adults (They have seen death through the loss of pets and farm animals - I know its not the same as the loss of a parent).
Talking about death is also different from being close to death and I have been close a couple of times during this journey. But like the black Knight in a Monty Python skit I keep fighting and hopping back up. "Always look on the bright side of life"
So be well dear fellow MM patients and enjoy the beauties of life.
I must ask a question here and if it is not received well or seen as nosy I do apologize. It has been my experience that only when people are looking at death straight in the eye do that choose to speak of the "elephant". Has your health taken a turn for the worse?
Hey Stann! Doesn't sound like you are in denial to me! Thanks to our "first time caller" new physician friend for sharing his insight--and everyone else that is helping keep this dialogue alive. My feeling is that anyone that takes the time to read a column like mine, and hopefully the comment thread that follows, most likely has a pretty good handle on things.
I'm 39 (married, 2 daughters ages 9 and 4) and I had an autologous cell transplant last April. I'm not doind any kind of treatment since then. Things are looking "good". I went back to work on the begining of January... So, I'm OK. I'm just fine. It was just a "thing" like a flu or something... Seriously?? It is sooo weird!! Every single person around me refuses to even talk about "disease", of course death is completely out of the question. I believe that talking about things, helps to keep our sanity... Not talking is the worst thing that we can do. Just the experience itself, the chemo, the transplant... It's traumatic! It doesn't go away just because you don't talk about it... Humans need to share, to relate, to connect. Even when they have different views on a subject. So thank you Pat, and all the others that dare to share.
Thanks, Cecilia! And Larry, no major myeloma-related changes. But like many I've already had a few. But it isn't about me. That's what I think many miss as I write. There may be other patients that interact with as many myeloma survivors as I do--but there can't be many. My views reflect a composite of patients and caregivers. For better or worse, I tend to internalize things others share with me. I spend 2-3 hrs daily answering emails and calls from those in the myeloma community. And many are in really rough shape, with seemingly insurmountable challenges. I want them to feel like they can share, too. That it isn't their fault when others are doing well and they aren't.
Hopefully Dr. Eric M. will post more often. His insights as both a physician and myeloma patient could help us all collectively.
I personally believe that a functional cure for myeloma is imminent. I don't believe this is wishful thinking or unfounded. It based on the massive amount of research which is being done and reported on in the MB, the MMFR and IMF sites and Pat's own blog and elsewhere and my own experience as a clinical trial "guinea pig". Since I was diagnosed in 2011, two new drugs have been approved. I was lucky enough to gain access to one, carfilzomib, last year in a clinical trial as a newly diagnosed patient. I am treated at the NIH in Bethesda, MD which is the largest medical research facility in the world. It is a beehive of research activity on almost every ailment, including cancers which are much rarer than myeloma. My doctor there is super positive and enthusiastic about turning MM into a curable disease. This trickles down to his patients. Is he blowing smoke or overly optimistic? Maybe, but I like his mindset and that is what I have adopted. So far, for me, he has been right.
Nothing wrong with being optimistic, Terry! Personally, I feel one can be optimistic and realistic at the same time. Never apologize for hoping and believing in a cure. I like your description; "functional cure." As you know, I use "chronic cure." Think we are talking about the same thing. Our job is to stay healthy enough to avoid blood clots, pneumonia and other infections--and to be compliant, informed patients and work with our docs to keep our myeloma at bay, right? Right!
Right on, Pat! Trust me, the realistic part almost killed me last year when I had a pulmonary embolism when I progressed to active myeloma. I believe a cure is coming soon. Will it be myeloma's version of Gleevec that became the silver bullet for CML....or the amazing therapy that is used at the NIH to knock back hairy cell leukemia for decades to the point that these latter patients can again get life insurance? Probably not...then again, why not? From what I have seen in my trips to Bethesda, I am eternally optimistic.
Pat,
Any column that generates this much excellent discussion is definitely a great column. I just wanted to make sure everyone realizes that even if they found something other than allo transplant in first CR that was a potential cure for myeloma, we would not know it was a cure for years. There is no test that can declare a patient that has done an allo cured. We only know that the chance of relapse is very low (but not zero) if the patient has held a molecular response for 5 years. Any Doctor that says a cure other than allo transplant is close, ask them how they would know that therapy was a cure. I doubt they will have a good answer. I highly doubt anything that does not involve some type of immunotherapy will ever cure myeloma.
I also wanted to mention that Gleevac is no "silver bullet" for all CML patients. Patients can become resistant to Gleevac. Some patients cannot tolerate the side effects of Gleevac (like the currently approved myeloma therapies!) and have to discontinue using it. I know someone that has taken Gleevac long term. I would do a t cell depleted allo if I was diagnosed with CML as soon as I could as opposed to never ending cycles of Gleevac. My quality of life is much better than my friends that is taking Gleevac. Patients that have long therapy breaks are the ones that have the best QOL and I rarely hear any of the "big name" myeloma Docs discussing therapy breaks!
Mark
Thanks, Mark! Mayo Clinic and some other docs still suggest (or sometimes reluctantly agree per request of their patient) drug holidays. Same thing, right? Usually shorter, I'm sure. But I was planning to skip maintenance therapy had my auto SCT dropped me down into CR... By the way, what is a "t cell depleted allo?"
Wow, what an interesting discussion, with a lot of emotion. Although I want to be respectful of everyone's feelings and opinions, like Pat, I am puzzled by the comments that he's jumped on the "death train" and is cavorting with the Grim Reaper because he's encouraged everyone to come to terms with their mortality. Since being human is actually pretty terminal, I think that's great advice for anyone, not just MM patients. And I for one am happy -- and relieved -- to see this side of him.
Lately, I've become interested in the work of Stephen Jenkinson, a Canadian social worker and former director of a palliative care center. He likes to say that grief is the cradle that nurtures our love of life -- that only by contemplating and accepting death can we truly live freely. To me, that is the crux of Pat's message.
When Thebottomline2012 says "Thus to entertain the grim reaper prematurely is obsession and self-wallowing, as is telling your children and hence prematurely dimming and encumbering the brightest part of their lives," i want to argue that it is NOT obsession and self-wallowing to face the reality of our eventual demise, and that maybe, it even does our children a disservice if we view discussions of death as capable of dimming any part of their lives. Certainly, discussions should be age appropriate, but what is the point in pretending that the rules of nature don't apply to everyone? of course it's always sad when children lose a parent too early, but this too is another fact of life from which we shield ourselves (which isn't even an option for most of the world's population). How can we prepare and still protect?
Whether or not MM is cured isn't even relevant, really, because there's still no cure for death and if it ain't by way of MM, it's still gonna get ya. believe we live in a very death-phobic culture -- where succumbing to our own mortality is often viewed as weak. We "fight" cancer, we "beat" the disease, we "conquer." And just using these words might sometimes imply that dying is actually "failing," and that does us all a disservice (ever notice how those who "battle" cancer are deemed courageous and strong, yet rarely do we hear the same about those who die of heart disease?. Then we hear whispers of all they should have done to take better care of themselves...value judgments on how they did not do enough to stave off the inevitable). There is power in language and I think our societal discourse on death -- or lack thereof -- may not only impact our ability to deal with the subject of our own deaths, but the death of those we love.
I believe we owe something to the dying -- how we are there for them in that process -- and I don't know how we can figure out what that is if we don't openly discuss our own deaths. Maybe with more discussion and cultural acceptance, not denial, discussing death wouldn't be viewed as grim? Anyway, it's been my experience that there's a pretty strong need for a place where people feel safe having these discussions. I respect those who feel that they don't need to have them, but I hope they can respect other's rights to do so without judging them.
Excellent column. (I meant to say that last week when it posted and then by the time I came back, there were a ton of comments, so I am jumping in rather late!) Death is the end reality of living. We are particularly reluctant in this country to acknowledge that death is what happens to us all--I give you high marks for not being afraid to broach the topic. I think there needs to be more open discussion of dying, and I don't think my feeling that way makes me a fatalist or being unduly negative about my myeloma. Thanks for saying it out loud, Pat!
Thanks for the support, April and Kit! But I'm OK if things go off on a tangent, or if some things I wrote are misinterpreted or misrepresented, as long as the discussion and awareness continues. That was the original idea behind my column. Kit, could tell me what you found most relevant from Mr. Jenkinson? I am also interested in palliative care. I understand how upset patients and caregivers can be when their loved ones are only prescribed therapy to "help make them more comfortable" or "slow the inevitable." I think how this is done (usually poorly!) could be an art and key to one's quality of life as they near the end. No, my interest isn't because I'm crossing over to the dark side! My father is going through this right now at age 91 with metastatic prostate cancer.
Pat,
There are times you have mentioned that it seems that patients in the midwest seem to get more therapy breaks than patients in other areas. If the NYC area has something "unique" with respect to myeloma therapy, it is the use of a T cell depleted allo in first CR. Two of the 3 opinions I got involved doing a partially T cell depleted allo in CR1. T cell depletion greatly reduces the chance of the patient having extensive chronic GVHD. ECGHVD is the bad kind. I know you have met patients that have long term GVHD problems - they have ECGVHD.
My Doctor did it by using a polyclonal antibody called antithymocyte globulin (ATG). I was given it for 2 days prior to getting my Donors cells. I have seen the rate of ECGVH from as low as 3% to as high as 20% when using ATG. Without it I have seen rates like 25-50% plus. It really depends on the dose. When I say my Doctor did a great job with respect to my allo, a lot of that is because her dosing of the ATG was "right on the money". I had a Grade 1 acute GVHD skin rash and I had very limited chronic GVHD for one month (skin rash and sore gums) when I got off my immunosuppressive drug (Prograf). It went away with no therapy. When you hear Doctors say a little GVHD is a good thing, what I had was what they are talking about.
You can also do molecular purging of T cells before the Donor cells are given to the patient. Two well respected myeloma Docs, Dr. Stadtmauer from UPENN and Dr. Hari from Medical College of Wisconsin, were involved in an AML allo study that used molecular T cell depletion along with a low dose of ATG. Only 6.8% of the patients had ECGVHD at 24 months. The best part IMO is that those patients needed no Prograf. Those patients took no immunosuppressive drugs after their allo. That is a great thing. With respect to side effects, Prograf is like a non-steroidal version of DEX. You have a "short fuse" and have problems sleeping when using it. Here is a link to that study if you are interested in reading it. It describes the concept of T cell depleted allos well.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3150599/
The reason that you do not hear about it much with myeloma is you need to use a strong conditioning regimen to use T cell depletion. The few myeloma patients that do allos typically do "mini's". You cannot do a T cell depleted allo with that little bit of conditioning. It is also difficult to use it on relapsed patients because the T cell depletion takes away some of the immunotherapy from the donor cells. Relapsed patients, especially those that are resistant to all the drugs, need all of that upfront immunotherapy to try to avoid an early relapse. Another good reason to do an allo upfront as opposed to when everything else has failed. While I do not know for certain, I believe Robin Roberts did some type of T cell depleted allo. Dr. Giralt definitely uses them and he mentioned on GMA that Ms. Roberts was in a clinical trial. While I am often critical of the "big name" myeloma docs, I have nothing but praise for skilled allo docs like Dr. Sergio Giralt.
Mark
Thanks Pat, the subject is very important.I'm just afraid of how not when.I wish it was soon, I hate this long drawn out sickness. judy
I'm sorry, Judy. Its so hard! Wears on your body and mind. I know it does mine...
Hi Pat,
You have inspired me and calmed me with your insightful and honest columns. Your column today has really resonated in me. As a smoldering myself I live with painful joints, and some new neuro issues I am grateful for the "sunny days" but continue to figure out how to manage all the others in between. I am also a caregiver for a wonderful parent with end stage neuro illness, so we are in a very special marathon together! We are learning everyday how to take this in little bites! I often have to simply tell those that wish to go the "well, you know route "yes I do know , now tell me something wonderful happening in your life" It lifts my spirits to hear the joy in their voice! When the down days, weeks come there are those few wonderful beings in my life that I can count on no matter what to just listen. I call them and we talk about whatever, it eases the anxiety and hopelessness that just creeps in some days. Pain is exhausting, any joy is invigorating! I create for myself each day a way to reach out into the world. It helps. Thank you for reaching out in the way that you do!
Sounds like you live with a lot of stress, but you seem to be handling it well, Kathym. I'm glad if my columns can help. I'm not a doctor, but as a patient that had a lot of irreversible bone damage prior to my diagnosis, don't wait too long to get treatment once you become symptomatic. Are you painful joints myeloma related or do your doctors think its from other causes?
I am the spouse of a myeloma patient. I agree that one should accept and face the realities of the disease. However, at the same time, since such heroic efforts are being made by doctors and researchers to help myeloma patients extend survival, why not focus on this? Given the announcement yesterday of the IMF's Black Swan Initiative, I prefer to focus on hope.
YES! Focus on hope! I agree with that! Sounds like you are doing what I suggest, Gratia; you are aware of both. Good luck!
Great topic and thoughtful discussion, Pat. Thank you for leading the charge!
When I was diagnosed 4+ years ago my kids were 11 and 5 and I used a 'we're going to eat this elephant one bite at a time' metaphor to describe how we were going to get through this MM mess. We agreed that elephant probably doesn't taste very good and that it's way more than a reasonable plateful, but to get to the dessert, I'd better get to munching. It sounded much like their experience with cauliflower.
We didn't talk about death with them, they were too young, but my wife and I have certainly discussed it at length. I've never let my faith and general positive/productive outlook mask the fact that MM will, more likely than not, have something to do with my demise. I'm comfortable talking about the end of life issues such as how and when I might pass, preparing a will, etc. I don't dwell on death and it isn't in my daily thoughts, but its inevitability hasn't escaped me.
Some people can't approach the subject very easily. That's okay, and understandable, but the longer we are immersed in the MM world and the more we experience losing friends and acquaintances to this cancer, the more we sense the elephant looming.
But I'm not willing to let the pachyderm behave like runaway myeloma cells and crowd out the good things in my life. So rather then letting it trample me in surprise, I'm going to throw a saddle on it and ride it through through the majestic Alps like the triumphant Hannibal did . It might, however, look more like a clown riding Dumbo through a circus. Such is my lot.
Great advice, Sean! Making my point; hard to not get run-over if you can't see the elephant coming!
Fifty-eight comments so far! Incredible! You can run but you can't hide from the implications of that!
Sometimes it haunts me. Sometimes I'm completely accepting. Someone said that the sad faces of others when they ask, "How are you?" are signs that they are pre-mourning you. They are feeling IT too.
So I live a day at a time. We aren't even doing anything "special," just keeping on going on. I'm grateful my kids are grown and this task won't have to be left to my husband.
My sister died this month, suddenly and completely unexpectedly. None of this taunting, and sometimes fearful, waiting. So in life we are just a step from death. That's just a fact, and it will remain so until God defeats this last enemy.
Julia Munson – Pray for the cure!
So sorry to hear about your sister, Julia! I feel exactly as you do. Heart warming to hear you express how I feel. Day to day, hour to hour. Of course I'm immersed in all of this pretty much 24/7 so my feelings and mood can change a number of times in a day. That's why I wrote about how I try not to have--or waste--an entire day. Just a few hours here or there when I get frustrated, feel an extra amount of pain or run out of gas. God bless!
Aloha Pat,
This thread is AWESOME! I will try to point this out to the Beacon publishers to let everybody know they need to read this whole thing; this thread is unusual.
Pat, you are an inspiration - obviously. The responses here are loaded with information for all of us in every stage of the disease. I am one week into my first treatment and this thread has enough information to help me pursue answers to every one of my questions!
Fascinating what happens when one sticks a fork in the ass of the elephant! I expect you knew what you were doing.
Carpe Diem (seize the day!) to all of you.
Aloha
Tom
Aloha thebottomline2012,
If you are still reading this thread, please reply to me at tscshale@gmail.com.
I would like to communicate with you directly if you are willing. I am in exactly the same situation and have the same concerns about dosages and drug usage as you. I am 50, have no symptoms but a high cancer load, and have two boys and a wife I need to stay here for.
I just started treatment 1 week ago and I want to keep my body from being overly poisoned. I'll take all I need, but not one drop more if I can help it.
Please reply if you are willing.
Aloha
Tom
Based on some of the conflicting responses, I'm not sure I would describe this thread as "Awesome," Tom. Bet you just started using dex! Seriously, glad to help anyway I can. Yes, lots to learn when you are newly diagnosed. Myeloma is a difficult cancer in many ways. One of the most annoying to some is the fact we need to be exceptionally informed patients. Too many treatment options to allow someone else to take full control--at least that's my well-known opinion. Good luck and thanks for reading! Pat
Aloha Pat,
The conflicting responses are what makes this thread awesome. You are right though - the capital "A" probably came from the dex. I started last week.
One of the key points for me was brought up by "thebottomline2012" and involves dosing amounts and continuing drug use. Would you possibly have changed your treatment in hindsight? Specifically, is it your opinion that dosages should be adjusted case by case?
Thanks again for your support!
Aloha
Tom
YES! I think docs should be more flexible and think about that more. Another argument for becoming an informed patient, Tom!
Congratulations Pat for setting the record for the number of comments for a Myeloma Beacon entry (#68 and counting). You have struck an important cord that is good for everyone to reflect on, since we all have a death sentence by virtue of being born! As a former obstetrician who helped bring about 5000 babies to the world, each a precious experience, I can see the parallels of birth and death. Both transitions deserve to be honored. The science of thanatology is all about that.
Ultimately, we can struggle, give up, or take the middle road: surrender control, and enjoy every day to the fullest, while taking care of ourselves and others as best as we can. There are blessings and profound lessons on this path if we are willing to recognize and acknowledge them. By letting go, we can lose our fear of death. The truth is that no one knows what happens to our consciousness after we die. But I have a deep faith that this life is not all there is. For me death will be the greatest adventure I can think of (or not); any fear or regret is gone!
Today is the first day of spring, also known as "Happiness Day". We had our monthly myeloma support group here in Eugene Oregon. At the end of the meeting I proposed that next month we discuss death and dying as openly as possible, for those that are willing. Facing denial and the proverbial elephant in the room is bound to be insightful. We'll see where that discussion leads.
May all beings be happy, peaceful, healthy and liberated! Jan
Hi Tom-
I agree with your assessment. These drugs were not designed to be used indefinitely. Clinical studies usually only figure two years or less on a therapy. So sure, lower the dose the better. But perpetual chemo beats the alternative! At your age, you will feel that way soon, too, and probably stop fighting it. Not so bad for must of us, most of the time. Welcome to the club!
And Jan, good for you! Support group leaders I know are constantly struggling for a balance. You don't want meetings to be a downer, but bad things happen to good people with multiple myeloma, too. We get depressed, experience setbacks and sometimes pass-on. You might get a kick out of this; a caregiver that attends a friends meetings complained that everyone was TOO HAPPY! Another argument for balance?
Useful, productive, even volatile discussion here: one that we need. Unfortunately.
I'm of the Dr HST school of acerbic cynical anger searching for idealism in the end. But we all have our MO for facing this orphaned disease.
Bottomline mentioned an alternative to Dex. Can you give us some details? What do we ask our Onc in terms of drug names , etc. I work with Johnson in Chatt and Lorneal in Atlanta. After cheating the odds of death sentence Plasma Cell Leukemia, I was in vgcr, but , just like Pat- and freakily a week after his post- my M spike became detectable.
I hate the chipmunk face that Dex gives me. I even use testosterone to counter the muscle-weakening properties. As an ex-pro runner turned cyclist, I also despise the 20 pounds that Dex has bloated onto my once whippet Manorexic frame!
I know, its rough, Van. Does the testosterone seem to help? I'm investigating that for me...
As a healthy athlete, I had an almost illegal (bring it, Lance!) level of hematocrit (52) and testosterone (off the charts for an 18 yr old in my 40's); therefore, I'm quite greedy in terms of my numbers. Of course no onc tells us that Revlamid hammers our testosterone. I had to find out over a beer with a top-level endocrinologists at the Olympic Track Trials in Eugene this summer. He was Carl Lewis's doc. Knows his hormones. You need to test your FREE testosterone, not your regular T.
My Emory pro onc said T would not adversely effect my MM.
I use Axiron, an underarm gel-liquid. It helps with red blood cell counts and muscle strength. And obviously, the lower abdomen. Although without a dating interest, it's kinda like someone giving you a Driver when you don't play Golf !
Free testosterone. Check. Sounds like it might be worth a try. Thanks, Van!
I have been using a preparation of testosterone specially formulated for me by a local pharmacy for several years now. I think it has a lot to do with why I am doing as well as I am. It definitely helps with strength, confidence, motivation and the will to accomplish.
One thing that many folks miss is that testosterone can be converted to estrogen. Estrogen has the opposite effects, and can make you fat. It also induces gynecomastia and testicular hypertrophy, both cosmetic and so not of much consequence. However, the T that is converted to "E" is no longer working as an anabolic steroid for you. There are a couple of supplements that claim to inhibit the T to E conversion, and they probably work. Those who use T a lot also say that it's important to take a week off every so often, to allow your metabolism to "normalize," and to minimize the enzymes that do the conversion.
This is all starting to sound more complicated than my local internist is prepared to deal with. But I'll start there and see how it all sounds. Thanks, Van and Frank! Pat
Pat,
Great job with a tough subject. Years ago, before Tim's diagnosis, I saw an Oprah show that featured a young woman dying of breast cancer. She had a young daughter and she was making videos of herself telling her daughter things she would not be there to tell her later, things about boys, female things, even how to apply make-up.
I don't remember how it happened but during her treatment, she wound up dying and was revived. She said it was the best thing that ever happened to her. She was able to live the rest of her life out happy and without fear of dying. She knew, without a doubt, that she, her husband and child would all be OK and that what was to come was beautiful and not something to be feared.
I used to wonder why we all seam to fear death, almost like we were meant to fear it. Of course, the big reason is the unknown, that's why they call it Faith, but I personally think the other reason is that we would not value our life here on earth as much if we knew for sure that the next phase would be so much better. We might all just throw in the towel and end it all at that first signs of struggle in our lives if we knew for sure. Just my opinion/observation.
So true, Denise! I don't fear death (much) anymore. Figure I'm on "bonus time!"
Hi Pat, I really enjoyed reading your article and the comments that followed. It does point out frustrations that fester under the surface, making my future so fuzzy. I find it especially disturbing that my doctors seem to be reluctant to provide me with any details or even basic concepts of what my future really holds. It is like they cannot really deliver anything negative because negativity is unacceptable. There seems to be no difference to them between negativity and facts. Their common phrase is "you're doing just fine."
I spent my whole life as a senior management player. It was my job to look ahead and have action plans for various scenarios. Now I find that I cannot plan for negative scenarios because no one wants to talk about that. The funny thing is, I am pretty sure MM is going to take me to my death, but I don't really know that either, do I? I see several scenarios. I can talk about some of them and work with my financial planners and attorney to develop plans. But when it comes to actually dying, everybody smiles and says "don't worry you're doing fine. You'll beat this." Maybe and maybe not. But this attitude continues to bug me.
I want to share something that happened that brought to light all the folks who care about me in any way on any level and have probably already talked about my passing to themselves or to others. This is probably the case for you, too. One day I was riding in the car with my kindergarten-aged granddaughter in the back seat. She said "Today I went to the library and got a new book, grandma." I asked her to tell me what the title was; but being so young, she really couldn't read it. I told her that I would pull to the side of the road and read the title to her. The title was "my grandma lives in the stars." Wow, that was a very unusual book title for a kindergartener. I couldn't help but start reading it. Page by page it showed a family member, a mom or dad or dog, and the only words on each page were "goodbye mom", goodbye dad", goodbye dog," and on and on. In each illustration, the sky got darker and there were more stars. One star in particular got bigger and bigger and bigger. At the very and on the last page it read (and I'm writing this from a faulty memory since the book had to be returned) "My grandma lives in the stars." And one star outshown all the others.
I didn't know what to say. It really caught me by surprise. I didn't want her to see me cry, but the message was very clear. That sweet little girl only said "you know, grandma, I really love you." And that was the end of our conversation. she looked out the window at a passing truck, and said, "what kind of food is that truck delivering to the store?" Our conversation about death was over. But it was then that I realized that my loved ones were already discussing the future with her and preparing her for it. They may not have talked to me directly about it, but they were trying to prepare for what is inevitable.
So I share this with you to remind you that even though you may not be in on discussions, rest assured your loved ones, colleagues and others are thinking about you...and themselves, too. It reminds us all of our mortality. Folks know that I (and you) are headed down a bumpy road. But nobody really knows what's at the end of their road? We just have to keep on doing the best we can. The road is what it is, and I will try my best to deal with whatever I must. It may be MM or it may be something else, I don't know. I only know that I'm so very grateful for every day, every minute. You have probably heard the saying that what makes God laugh is men making plans. MM proves the truth in that saying!
Thanks for sharing your thoughts, Sue! It hit me again today. I was a bit "negative" on the phone with someone in the industry. In other words, we discussed death and dying and a myeloma friend I had just lost. When I hung up, I felt guilty about it! Can you believe that? We should be able to share our fears and openly discuss them. But I find the myeloma community is becoming a positive only type of thing. Can't discuss negative stats in a support group. People lament reading so much misinformation on the internet. Know what that's code speak for? They read about a four or five year life expectancy. It isn't incorrect; they just don't want to see it! Of course, a low risk patient can have a reasonable hope of living a decade or more. But half don't. HALF. That's what a median is. We all think we are going to be in the good half, right? Human nature. Denying our mortality is crazy! Doesn't mean I'm not hopeful or positive; just realistic. Good luck!
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