Pat’s Place: Acceptance May Be The Key To Living A Worry-Free, “New Normal” Life
Today I completed the last of my 13 radiation treatments for the lesion in my right hip. Let’s hear it for lucky 13!
As I gathered my things and headed to the changing room, one of the radiation techs wished me well and said goodbye. She added they would all miss me.
“Don’t worry.” I said. “I will probably see you again in a few years.”
“Don’t say that!” she replied, a bit surprised.
“That’s ok. I know my myeloma will come back,” I explained. I ended our conversation by saying “When it does (come back), we’ll just knock it down again!”
Acceptance. I don’t worry about my multiple myeloma coming back—I have accepted relapse is inevitable. It’s a fact. A myeloma patient would probably have a better chance playing the lottery than achieving a permanent remission. The possible exception to this rule is if one is willing to take the high risks associated with undergoing a donor stem cell transplant. Then there is around a 15 percent chance of a cure. Of course, there is also around a 20 percent chance of dying from the procedure. I think I will skip this option—at least for now.
All of this doesn’t mean I have given up on seeing a cure. It just means that, until there is a cure, I have accepted the fact that my myeloma will become active again someday. So I don’t worry about it!
There is a certain freedom in accepting one’s mortality.
I spoke with a newly diagnosed patient and his caregiver recently while waiting for my radiation treatment. This 65 year old was having a single myeloma lesion radiated in his lumbar spine.
I could tell he was still in shock and denial. I tried to interest him in visiting our new support group, but I would be surprised if we see him at a meeting.
Why? Because he hasn’t learned enough about his cancer yet. He is still definitely in denial. “My doctor told me I will probably die of something else,” he said quietly. I could tell he didn’t want to deal with it.
Too bad, because now is the time he could really use the support he would get from our group—plus the information about treatment options and side effects we all share regularly.
Another newly diagnosed patient contacted me by phone. I don’t mind, except it didn’t take long to realize this younger gentleman was still deeply angry about his diagnosis. He didn’t want to hear what I had to say. He was going to do things his way—right or wrong. He wasn’t happy about having to face his own mortality.
Even though he was just starting induction, he was already speaking to specialists about getting one of the dangerous donor transplants I mentioned previously. No matter how hard I tried to argue, he wasn’t going to listen. An aggressive transplant specialist was pushing him toward that donor transplant.
This patient was so afraid of dying—so desperate for a cure—he was willing to try anything to make the pain go away. I wish him well.
I prefer to know my enemy and be able to face it. Having a slow acting, lethal cancer leaves me fighting a battle for survival on a single front.
Call it rationalization. But it works for me. And I believe it can work for you, too.
Denial helps for just so long. And in the meantime, therapy errors can be made that might have been avoided had the patient and caregiver been less fearful and more knowledgeable about their treatment options.
Four years ago when I was diagnosed, we didn’t have sources of information like The Myeloma Beacon or the many other blogs and websites out there to help get an experienced patient’s perspective on things.
I was desperate to find sources of information about myeloma—especially after the dust had settled three or four months after I was diagnosed and started treatment.
I could have used the help.
So take a moment to reflect and meditate about your situation. Are you in denial? Are you still angry about your or your loved one’s diagnosis?
Acknowledging this is the first step toward acceptance—and hopefully a longer, happier “new normal” life.
Feel good and keep smiling! Pat
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I want to thank you for your postings. I was diagnosed about a year ago with MGUS. I immediately read everything I could find Multiple Myeloma and joined an on-line support group.
The most active member of the group keeps saying the same thing that that other patient's doctor said, "You will probably die from something else". I like to be reassured of course but it doesn't always fit. A few days ago, one of best friends in the group was told that she now has Multiple Myeloma. She posted and I was only person to reply. It was almost as if she violated the group by getting it!!!
I wrote to her again and asked her to join a MM group. I haven't heard back from her yet but I sure hope that she does.
My doctor is different. He always says "You don't have it yet". I don't know what I probably die of yet, I also have sarcoidosis but I
know I will die.
Carol Wong
Great article Pat. I agree with you completely. I think it is important to face the reality of the disease. I have been living with multiple relapses and In the back of mind I always know the myeloma will get me at some point. This gives one a unique perspective on life that few have. It is also important not to forget about the myriad of new drugs in the pipeline for myeloma patients, giving people hope. But again as we all know none of these drugs at this look to offer a "cure". Education, realistic expectations and trying to turn negatives into positives are all extremely helpful Thanks
Dearest Carol-
I understand! Even in MM groups, things always get a bit strained when a member takes a turn for the worse or dies. So many patients are doing so much better--and living much longer--groups like these can go years without losing a member. Ours is going through that right now.
I wasn't aware there were any MGUS groups... I can imagine how difficult it is when a member develops active myeloma.
We can be as philisophical as we want or need to be. But in your case, I might take a step back. Just live! Forget about all of the other stuff... You know the basics now. Mentally set it all on a shelf and forget about it! If and when your MGUS progresses, worry about it then. There will be lots of new therapy options available by the time that happens. Good luck! Pat
I think that denial and anger are all just the stages one has to sift through. Like the stages of grief, you need to let them move through them. It's good that you recognize them and observe them however. It helps in the dialog.
I take a little different acceptance point of view. I would never SAY it will come back nor that Dave will die from it. I sometimes have to mention it on my blog so my readers don't think I'm completely oblivious to the apparent inevitability of its return. I just understand that while it is most likely, it is also, though lesser, a reality that he could be one of the "medically insignificant" which would be personally significant to us. There is a real chance due to his youth that he could die from something else, like a secondary cancer! The double edged sword for one who is young with MM. He might beat the disease but will he beat the ramifications of what was used to treat it? So I don't promote anything that says it will be back and it will kill him. But trust me, I have fully accepted that it may indeed be the case. There ARE long time survivors out there, not enough, of course, but we have often said the reason you can't find them is because they are out living their lives.
Dave and I decided we would not be held hostage to our fears and worries of all manner of things, including relapse. It steals your good days right out from under you. Facing one's own mortality is a slightly bigger view I think and we are at peace with that. Myeloma may be the means to that end, but it is only one possibility of which we 'know' about. It could easily have been something else and may be something else. In the meantime, we are immensely grateful for the time we have gained.
Great post Pat and congrats on your new glowing self!
Pat,
Thank You for writing and sharing about your MM. Your articles are very interesting,well written and thought provoking.My wife was diagnosed a year ago and so far is doing well. Your articles and the Myloma Beacon have been a Godsend for me. I look at it everyday and look forward to reading your articles.
Thank You once again
Mike
I don't know how you can be so accepting of potential death. You have to fight your best fight. I'm not treated yet but I'm starting to think UAMS has the right idea. Blast it as much as you can and then see if you're one of those who gets the long term remission/cure. From what I've been reading, even those who chose light treatments still end up with all the same side effects (PN, fatigue, etc.) and have more trouble with their bones and such because they don't wipe out the disease and the low levels within do damage to them. Might as well clean it out and have 5+ years of normalcy.
I was diagnosed with MM about 3 months ago, and have gone through a course of radiation to hit a couple of tumors in T9 and T12... so far so good. Minimal pain/discomfort... still living my life.
One question: in your article above you imply (basically state) that doing the stem-cell thing is crazy... that there is a 20% death rate. Can you substantiate that? I am being advised to go this route, and the stats that I have been given (both by my doctors and in other research) are 10% longterm remission vs 1% death (for a single course... I understand that the "B.B. double course" has different stats.
BTW: I wholeheartedly concur with your philosophy of acceptance. I am 56 years old, and this past weekend we celebrated my 92nd birthday because, after all, we sure ain't gonna be celebrating it 36 years from now
John S. - LOVE that you celebrated your 92nd birthday, 36 years early ! It's that kind of humor and positive mindset that will serve you well during this fight against MM.
I was diagnosed at age 47, back in 2000, and had chemo and total body radiation before my first autologous stem cell transplant that same year. I had a second autologous stem cell transplant in 2004, and have been in remission for almost 7 years now.
After living with this diagnosis for eleven years now, I am no longer at the point when MM is the first thing I think of upon waking in the a.m., nor the last thing on my mind as I fall asleep, like it was when first diagnosed. MM has become part of my life. I have accepted that I am sharing this body with those renegade cells, and I know that it is a not a question of "if" I relapse, but "when". Until that "when" happens, I shall continue on my way, enjoy every minute of growing older, and cherish all moments with family and friends. Patience and perserverance....one day at a time.
Hey Gomer-
Acceptance doesn't mean capitulation! I haven't given up--just not going to allow myself to feel like I've failed if and when the myeloma gets me in the end. If that's how you feel you should try UAMS. Certainly an acceptable alternative. I still argue you are only buying time until something new comes along--and you can do that either way- Pat
Hi Pat,
I enjoyed your article very much. I was diagnosed with MGUS in 2006; by 2009 it changed to bi-clonal gammopathy. Presently, I have smoldering multiple myeloma with hypogammaglobulinemia and several lesions on my spine. I am one of the 1% of patients that wasn't supposed to progress. I think we all need to live every day to the fullest and enjoy all. My husband, a doctor of internal medicine, left me. He didn't want to be around someone dying.(His words). Well, I want everyone to know that we aren't dying, everyday they are finding more treatments, patients are living longer and we will find a cure. It does take patience on the days we can't move as much as we used to but it could always be worse. I laugh more, love always and instead of dancing in the rain, (could get a chill), I run in the sunshine.
Hi Marian, sorry you had to deal with that along the way. I like your moxy! Best to you.
Pat, another good one. No-one is saying quit, just more than one way to approach Myeloma and one size does not fit all, so to speak.
Hi Marian-
Sounds like your husband doesn't deserve you! Glad you are doing OK... You go, girl! Pat
Gomer, the current transplant stats are 3% morbidity for auto (your own cells) and 30% for allo (donor cells, although it's a tad different if related vs. unrelated donor). We treated at UAMS and are happy with our choice. You should check out Nick Van Dyke's blog to get the low down on UAMS if you want specifics, stats, science. He is very detailed in that regard and my go to guy for those kinds of questions. My opinion is that you need to state your goals, then look at the maintenance route, SCT route, UAMS route and adjust your goals according to the information you gain in that pursuit. My husband was 48, Nick I think was 40. We both, independently had the same goals and treatment choice, which was to aggressively attack the MM from the outset. There are fair arguments to travel down a maintenance road if you are Low Risk. I maintain, that which ever route you choose, your life is changed dramatically and impacted with side effects, suppressed immune systems, and a whole host of things. How you deal with all of that will be the bigger challenge once you make your decision. Good luck to you in these difficult choices. There are simply no guarantees on any of the paths currently available, but Little Rock's numbers are impressive, which came out after we made our treatment choice. You will learn more as you go.
Lori and Gomer-
A Mayo Clinic myeloma specialist described it to me this way. You can slowly pull off the band-aid (maintenance) or rip it off (transplant). Total Therapy wasn't given to me as an option. But if a single SCT was considered "ripping it off," then TT with tandem transplant must be... Let's say even more aggressive.
Gomer, if you want to be aggressive, go for it! UAMS might be an excellent option. But with TT, you will go through a lot of side-effects up front. My side effects using Revlimid (and no SCT) have been quite easy to live with. Now, four years later, I am going to undergo a single SCT. Then my plan is to resume novel therapy after my myeloma returns in one, two, three or more years. With luck, I will still be around in 10 or 12 years--just like someone who, with luck, underwent TT and did well.
I wish you the best. Please note I plan to be around just as long as a TT patient... I'm just going about it a different way. Someday we will know which way works best (maybe they both work--or maybe there ends up being very little statistical difference) I would say I can't wait to find out. But yes I can--I don't want to rush through a minute of the precious time I have left! Pat
Hi Pat,
I am writing from France. I found The Beacon site some weeks ago and I am very happy to learn a lot about new therapies and to read your articles. I am on the same way than you, diagosed last year at 47, Velcade, Revlimid, Doxorubicin, stem cell transplant and Revlimid as maintenace therapy. I suffered as well vertebrae pains but I am pretty fine at the moment. I restart working on a half time basis. I think no one can avoid a great shock in the weeks following the diagnosis. I appreciate your point of view : one can't forget the disease but we have to tame it if we want to live as normal as possible. I sometimes imagine what would have been my life without the disease but I am now fully aware that we can not go back. It is really hard to see that we could leave this world before having done, having seen, having learnt all the things we want to. So there is an immense work on ourselves to do and as you say it is the only way to enjoy life even it is harder now.
Happy Friday all-
First, Pat, I have to thank you for taking the time to create a place of sharing...be it informational or emotional. I was diagnosed 16 years ago on October 17. Funny how you remember some things with such accuracy. EVERYTHING I see posted here I can relate to in a thousand different ways...knowledge is power, acceptance, develop your sense of humor and most of all LIVE YOUR LIFE and do not be a hostage to the "dragon" MM or those who don't support this journey. Surround yourself with love and hope.
I went to UAMS/ACRC when I was diagnosed at 31. I firmly beleive they saved my life with the tandem autologous transplants, agressive therepy and maintenance. I won't lie, it was a very challenging long journey...and totally worth it to me. However, having said that, treatment and approach to this disease is VERY individual in how people choose to fight back. With agressive treatment there is also risk and it is up to each of you to weigh the risk versus reward.
I have had two relapse with radiation and since then a third transplant(not at UAMS) with my 13 year old frozen stem cells which was questioned but it was my decision to move forward with the 3rd transplant. I am in my second year of post-transplant maintenace with Velcade and Revlimid. I stay informed and try to always remember that progress is everywhere...so are blessings.
The bottom line-Stay informed so that YOU can make the best possible choices for you. I wish each of you fellow MM warriors tenfold the blessings I have been given and a rich, healthy long life
Your article articulated a lot of what I've been thinking.
Yes, our chances are greater that MM will be the cause of our deaths, but don't count on it. As you drive down the highway thinking, "I might not live long enough to see.."...(you name it), a big rig might just hit you head on. And if you sit around and worry about your MM for all of those years, you might feel like a real dummy if the proverbial truck hits you.
I realize this sounds dark or possibly immature, but it helps me deal with the challenging deck of cards I was dealt.
I'm 48 with 3 children under the age of 17, so yes sometimes I do feel gypped, but I try to put it into a different perspective.
@ Marcie: 16+ years!?! Wow... that is so encouraging!!
Agreed! 16+ years makes you a Myeloma Warrior Hero! We, newly in this game glob onto folks like you in a big, big way! Thanks for being there and giving back to us by making yourself known!
WOW! I step out for the afternoon and miss a chance to respond individually to a half dozen readers...
Stephane from France. Thanks for reading! Please share more with us about European "standards of care" on the Myeloma Beacon Forum if you get a chance.
I agree with Lori about Marcie. YOU ROCK! I also think Marcie's story is illustrative and helpful on so many levels. First, there is hope. Marcie was lucky. Lucky in general to live so long with myeloma. Lucky to have found a great program like UAMS. But let's not forget Marcie made a lot of her own "luck." She endured a lot those first five years--then remained proactive and vigilant--and she was willing to take therapy risks. But for me, the most important part of the story was about UAMS. Total Therapy--and all of the pain and discomfort Marcie endured--helped a lot. But it wasn't a cure. At least not for her. But she didn't get discouraged... Heck, I could go on and on. Let me stop and wish you all of the best, Marcie! Thank you so much for sharing- Pat
Great article, Pat. I agree. I was diagnosed in 2008 with MM. Two surgeries, chemo, stem cell transplant, more chemo. I had my first chemo treatment today after a 3 mth break. It's all good. As time goes by I look at it differently. At first I just thought "cure". Well the more I learned and the more I experienced the more I realized how lucky and fortunate I am. MM is no picnic, but you know what??? I am able to receive treatment and live a normal life. Some cancer patients don't have the good fortune we do. Some patients are told that nothing can help them. We are fortunate to go our chemo and radiation treatments. Life is indeed good. Thanks for the encouraging articles.
Thank you, Sherri! Many of us are fortunate, although most of the general public might not understand. But everyone goes through "stuff," right? But let's not forget our friends like Linda, a fellow support group member here in Florida who just entered hospice this week. Her bone marrow is shot and she is out of options. Makes me feel fortunate, indeed! Pat
Thanks for bringing this up, Pat. I recall how MM made me so ill 7 years ago. I began to purge my material possessions and changed my life in dramatic ways thinking I may have just six months or a year left. It's almost comical when I think back on that now. Time moved on and acceptance continues to be a daily practice--it's easy to drift back into denial. My life is "this" now--not the imagined plans for next month or next year. Fortunate to be in remission, I never stop viewing my body as a temporary dwelling place.
How profound, Pat! Couldn't have said it better myself. Thank you-
Pat
I like that your attitude is to keep on living and do the things you want to do! But I don't agree when you say a slow growing terminal cancer. MM is different for each of us. While yours may be slow growing and benign acting,which responds well to treatment not all MM can be described this way. My MM went from 0 to 100 (m-spike g/l) very quick and caused all kinds of issues with the rarer MM "hyperviscoity syndrome". Things like permanant vision loss (can still see but driving is not good for me now) And the permanat spine lesions etc.
Oh yeah, I'm 33 almost 34 so at my stage in life having cancer and coming to terms with my mortality were not on my list of things to accomplish this decade! While I'm dealing with having a terminal cancer ok now (counciling helped), I will not say I've "accepted" it as fate because I continue to pray for a cure and to be monitored closely.
You make a good point, Alyssa. Sorry yours moved so quickly, but glad you are still with us. I know another survivor who lost her vision following a SCT. Let's face it: Fast or slow moving, multiple myeloma sucks! Good luck- Pat
As to acceptance and new normal: While struggling through this and really being MAD that I have this thing, good old prayer came to my rescue. Now, when I feel discouraged, I use that awful feeling as a reminder of the great future I have in heaven, when ever that day comes. This may sound simplistic, morbid or trivial to some, but to me it's God right beside me.
Julia-
I'm glad you brought-up God and spirituality. How is that morbid or trivial? Sounds pretty grounded to me! Sorry you (we) have to go through all of this- Pat
Pat: Great post! There are even phases of Acceptance....
Acceptance of the diagnosis.
Acceptance of the disease.
Acceptance of the pain.
Acceptance of the treatment.
Acceptance of remission (maybe)
Acceptance of relapse
And, finally, acceptance of the end.
Not only does the MM patient have to "accept" all of these....the caregiver, and the family, must also be willing to accept.
I, as a caregiver, finally worked through the 5 stages of Grief. Learning that my husband had cancer was indeed a time of grieving. The last stage; Acceptance, was the hardest for me to accomplish. He's now in remission....and I'm ACCEPTING that!!
Keep writing, and we'll keep smiling.
Very helpful! Glad your husband is doing so well!!! A perfect example of how acceptance doesn't mean capitulation--or foreshadow a poor outcome- Pat
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