Arnie’s Rebounding World: Keeping It Real
Several years ago, well before I had been diagnosed with multiple myeloma, we had a family friend who was diagnosed with an aggressive brain cancer. He was one of these relentlessly upbeat, positive people, and of course, he approached his disease in the same way.
Despite the prognosis and all appearances to the contrary, he refused to accept any outcome except that he was going to “beat this thing.” Now I cannot speak to what he was secretly thinking or what he felt in his heart of hearts, but that was the public persona.
He seemed to genuinely feel that by the sheer force of his will, positive attitude, and good medical care that he was going to come out on top.
At that time, I was active in medical practice and the idea of having cancer myself was inconceivable. I was a clinician and using cool, objective judgment. I remember thinking, ”He’s not being realistic. God bless him, and I hope he does well. However, my scientific brain tells me that no matter how positive and upbeat you are, the biology of this disease is going to win out.”
Within a few months, he had passed away.
A few years later, I was diagnosed with multiple myeloma.
The memory of our family friend stuck with me. I remember discussing it with my wife and saying, “We will do everything we can, any way we can. At the same time, I always want to be realistic. I didn’t want to be like our friend, somehow deluding myself into thinking I can overcome anything and that it will all work out.”
I resolved to always try to keep it real. The analytical side of my brain knows it doesn’t always work out.
I am finding myself once again deep in the weeds with my disease. After a few months of feeling like things were going really well, I noticed a lump on my chest wall. A PET scan showed several areas of extramedullary disease.
So, despite a donor (allogeneic) stem cell transplant, donor lymphocyte infusions, and a regimen of Kyprolis (carfilzomib) plus Revlimid (lenalidomide), my disease has again relapsed.
A short initial round of Kyprolis, Pomalyst (pomalidomide, Imnovid), and dexamethasone (Decadron) does not seem to be working either, so we are now adding cyclophosphamide (Cytoxan) to the regimen.
I understand that this is bad. I read all the papers, and I know the statistics. I see the look in the eyes of my myeloma doc, which says without him even speaking that he doesn’t even know how bad this is.
I understand only too well. Things have been bad before.
Somehow, we have always managed to find a way. However, I may be running out of bullets, luck, and time.
I have given up on trying to explain it to friends. The response is always the same, “You’ve been in bad spots before, and you’re tough. You’ll be fine.”
“Well, no, you don’t understand.” Never mind. “I’m doing fine,” I tell them. I know one of these times, maybe even this one, I probably won’t be fine.
In response to one of my recent columns, a reader who was also in a very bad spot talked about it being an exercise of surrender and letting go of fear. I agree there is a certain amount of resignation and acquiescence that has to take place.
One of the interesting things about multiple myeloma as a cancer is that it tends to run a fairly long course, so there is a long time to think about and adjust to these things.
If people ask me about dying, I’ve had a long time to think about it. The idea certainly doesn’t come as a surprise or frighten me. Although, I have to admit I’m not too excited about the prospect of a slow painful decline.
At this point, there is almost nothing about the disease that seems to come as a surprise to me. I have come to anticipate and expect the bad news. I hope for the best but expect the worst.
Having said all that, I want to be perfectly clear on one thing. This is not the same as giving up or throwing in the towel!
At least at this point, I am doing none of that. I have not given up on hope. I still feel pretty strong and energetic. I am still going to try to do everything I can. I am still willing to put up with an awful lot of abuse if I need to. At some point, I may say enough, but I don’t feel I’m there yet.
However, I do think that it is important to move forward trying to be as realistic as possible. Keeping it real.
Arnold Goodman 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 by The Myeloma Beacon, please contact the Beacon team at .
Another home run Arnie. Thanks for writing so articulately.
My worst fear is for people to feel sorry for me, so I do play up the positive angle when asked about it.
I know this is a taboo topic, but you seem to brush up against ideas that some view as edgy, so I'm going to say it.
If we decide to go through the last 2-3 months of life in a hospital bed, with no hope, probably in pain, digestive issues, wracking up major health bills, why is that considered more heroic than taking things into our own hands a few months earlier?
I'm not a religious person, so I don't have that problem. But if I did take the early way out, I would hate to think of my death being viewed as suicide rather than succumbing to cancer. Leaving my wife and kids with that label would be my only regret. But thinking of that option has actually freed up my mind and made me happier.
I'm in semi remission and haven't felt better in years, so I hope nobody calls 911 on me for posting this.
And if I have brought up an inappropriate topic for your column and you want it removed, I wouldn't take offense if the editors did remove it. But I can't think of a more "keeping it real" topic.
You'd think it would be talked about in a forum that deals with a terminal illness, but it has to be one of the most taboo topics known to man. I wonder why?
Arnie, Your writing has been a great help for so many of us. As usual I relate to everything you said - especially the part about having a long time to think about death. My approach to death has evolved during my 6.5 years with the disease and I am grateful for having that much time. At 9 months after diagnosis I realized I needed to begin living each day not obsessing on my "Impending" death - in the early months I was maudlin, obsessing about how old my kids and wife would be when I died, and that sort of thing. I willed myself to "change the channel" to those thoughts and within a few weeks my thinking became much healthier. I consider myself a spiritual person and my discipline in those directions has been a big help. When I think I am relapsing my thinking does becomes fearful again and I have to go through the process all over again - practicing acceptance, gratitude, forgiveness and fortitude. Thanks for having the courage to share your thoughts about when the time comes when acceptance is the only tool left.
Joe
PS. I thought Stann's thoughts were entirely appropriate. Thanks Stann.
Joe and Stann great comments and I agree with both of you. Stann, I too do not think your comments are inappropriate, and in fact bring up some very important questions. As I mentioned, I also do not fear death as much as I do the prospect of a slow painful decline. There is however to me an important distinction between actively doing something to end ones life versus passively withdrawing support. I seriously doubt, and I say that now while I am feeling good, that I would have the desire or the courage to actively do something to end my life. Although I would not fault anyone for holding those thoughts. But I do hope that when the appropriate time comes to withdraw support that I or my family recognize it for what it is, and make that call.
thank you for keeping it real. I find going into my fifth year that people just don't connect that there will be a end everyone I meet say you look so good it's difficult for them to grasp that one day it will be the end. I do not fear death but as you said fear of having to suffer is a concern. I am looking for quality not quantity being realistic when it's time to accept what is and go as gracefully as possible that's my prayer.
Thanks, Arnie! Your clinical side is always of great import to me...and I've no doubt to many other readers as well. As I read this piece I will admit I felt a wave of various emotions....fear....sadness...anger (as in shaking my fist at the sky)...and then....HOPE!
Those of us who are patients don't want anyone to succomb to myeloma...obviously when one of us does we all do...at least just a little bit. But to know that you are still in there "swingin'", that you've not given up hope yet makes me feel better for you and for all of us.
That said, we all know that when our time comes we need our friends and loved ones to allow us to go in the manner in which we choose...whether it be by "end of life directives" or, as Stann courageously implied, by the heroics of our own doing.
But until such time, my dudes and dudettes..... FREAKIN' FIGHT ON!
Hi Dr. Goodman,
I would like to start out by saying that I think your an extraordinary individual. I have been in the background reading your columns for the last 3 years. My wife was diagnosed with an M-spike three yrs ago, so I know the feeling of dread every 3 months when her bloodwork is done. Her father died from this disease in 1988. I also suffer from heart arrythmias so I know that feeling of an impending sense of doom. I wrote to you because I think you're an inspiration to many people on this website and a great role model to your family. I know you're no where near throwing in the towel, but I understand how you feel at times. People like you, Sean Murray, Pat Killingsworth, Stephen Kraemer, Suzie Rose and all the rest of the people that share their views are great examples of mankind at its best. The biggest compliment I can give is if I was in a battle I would want to be in a foxhole with all of you! Dr. Goodman ,I hope your situation makes a turn for the better.
Good luck to you.
Joe
Hey Arnie, sorry to hear about your relapse. I don't know if you believe in God, but God comforts me. I live by myself and I talk to God all the time. No, I am not going crazy. But when I pray and talk to God, He answers me in unobvious ways, so I have to pay attention, and His answers help me deal with this cancer and the impending death. I would be lost without my Faith. I hope by telling you this, that maybe you can find help through God.
I found your words, "I have not given up on hope. . . I am still going to try to do everything I can," encouraging as I face my first relapse. As for fear down the road, I keep in mind the practice I learned of when a retired physician with whom I was acquainted chose sedation at the end. From Wikipedia: Palliative sedation, also known as terminal sedation, is the palliative practice of relieving distress in a terminally ill person. Knowing of this option has relieved me from worrying about the possibility of uncontrolled pain. And this choice it is still a way to maintain control of one's life and death. Thank you for sharing in such an open and honest manner.
I too have been reading these columns for awhile now. My M spike was "found" in 2005 after another unrelated cancer was "removed, treated and dealt" with and I've since had a 3rd, also unrelated cancer that was surgically removed. But it's the myeloma that put the chill in my veins!
On a recent flight I watched the movie "After Earth"....I won't comment on the movie but I would like to comment on a quote from it that jumped out at me. At one point the dad says to the son, "Fear is not real. The only place that fear can exist is in our thoughts of the future. It is a product of our imagination, causing us to fear things that do not at present and may not ever exist. That is near insanity. Do not misunderstand me, danger is very real, but fear is a choice. We are all telling ourselves a story and that day (referring to a horrifying near death experience) changed." --Taking into consideration that we're talking "Hollywood" here, but it did make me stop and think. I seem to have transferred all my fear to being in a car (crazy I know)....kinda like a twisted form of PTSD. It gives me a place to "put it". I work through it. Sometimes are worse than others. So I'm trying to remind myself that fear is not real. Easier said than done (I don't have a Hollywood script). But I do what works for me. And that's all anyone can do!
I worked in health care and I've often said that I don't fear death, but I do fear "how" I may die. "Modern health care and health care measures" sometimes leave dignity and "wishes" out of it.
I'm with you Arnie, I hope and pray that IF (there's that "hope") and when the time comes, that my husband has the courage to make the right "call"! I've done my part (written out my advanced directives and if anyone out there hasn't: "Get 'er done"!!!).
Hope comes up again and again. Our treatments and our statistics are all based upon those who blazed the trail before us. So I tell myself those aren't our numbers. We're living "our" numbers! Therefore we can't really know our outcomes based upon "the numbers".
So here's wishing and praying for that magic bullet for you (and all of us) Arnie! I too would be stuck in a foxhole with everyone on here! Continue to "fight the good fight" and don't beat yourself up for times of flagging hope. Everyone here is rooting for everyone here!
I'm in my 10th year of myeloma. Fear of mortality keeps so many friends and family members from acknowledging the fact that odds are myeloma will win out in the end. After nine+ years I've worked hard at, and have been able to achieve, a certain comfort level with what it all is. I can sit next to it, respect that enemy, and do my best to get on with daily living. But I've given up on being the super-hero cancer-fighting John Wayne others seem to expect due to their own fears of death. Its a drag to have to always say "I'm doing fine". Sometimes I diverge from that and actually say what IS going on, that the docs have discovered yet another chromosomal abnormality, etc., not caring much for causing discomfort. Hey, ultimately, those who can't hear it never will. Those who can will grow from our experience.
Great article, Arnie. Best of luck and hang tough.
Thank you for your message. I find it to be so pertinent to my circumstance and helpful to me.
I was diagnosed with stage 3 myeloma in November 2005 , at my 55 th birthday.
I underwent autologous stem cell transplants in June 2006 , November 2010 , March 2013 . The 2006 and 2010 transplants resulted in a 4 year and then 2 year remission. The 3 rd (2013) transplant was not successful as I relapsed in July with extra medullary myeloma. I have a large number of lumps on my chest wall and abdomen.
A treatment regimen of carfilzomib and cytoxan has not been effective, and I am to begin pomalyst and dexamethasone this week.
This marks the first time that a treatment medication(s) has not yielded a positive outcome for me. I have suspicion that perhaps extra medullary disease is very resistant to treatment? Further, more that at any other time during my 8 year myeloma "journey", I feel that I am running out of bullets with which to fight off this disease and the prospect of dying from myeloma seems real and imminent.
I still generally feel good, am active, and often have people tell me how healthy I look. Folks seem to assume that If I look healthy, then I must have beaten the cancer.
Again,Thank you for your insightful writing. I found it most helpful.
Gil Alderson
Desoto, Mo
Dear Dr. Goodman,
when I try to see your condition from a medical way (as you do it), some questions come in my mind. Please do not think, that I could mean, that you havn't considered every point inensively. I'm just interested in how you go have weight your otpions:
(and please excuse my english, I'm from germany)
- Laboratory Pretesting
Isn't it possible to screen your myeloma cells and find out, what makes them individuelly refractory against the therapies?
- Genetic Sreening
What tells your genetic screening? Do specialsts find a kind of translation that could give you a hint for further therapeutic options?
- Therapies
What is about the tons of experimental therapies we read in the news almost ervery month. Are there some interesting medical tests that are interesting (antibodies; reovierus etc.)
- Transplant
What ist about a combination of a mini allo and a therapy. Sometimes a combination shows new promise.
- Specialists
How do your specialsts analyse your myeloma? Do you think, another site could be more helpful and give you more hope?
I read quite often that myeloma is on the way to become a almost curable disease and that there had been hustle in the last 3 years.
When I read the stories in the beacon, we're not there yet. I'm keen on reeding morge about myeloma, that ist like yours here (*e.g. column form Dr. Rajkumar about hote and myeloma therapy).
You write a very impressive column! Good luck for you and your family.
Tom
Thank you, Arnie, and thank you all for sharing.
I was diagnosed 3 years ago, at age 55, stage 3, had 7 collapsed vertebrae and a plasmacytoma compressing my ciatic nerve. On March 2011 I had my ASCT, achieved complete response. Was on revlimid as maintenance therapy for 10 months but it gave me too many side effects. I relapsed Sept 2012, started velcade but by March 2013 became resistant, with my free light chains almost doubling every two weeks. A month ago I started a clinical trial. I am on Velcade and Dexa twice a week for 2 weeks on a 21 day cycle plus OSI906 100mg (lowered to 75mg after a rash) twice daily every day. Just on the first cycle my free light chains (free kappa) went from 21,272 to 1,817. There is always hope!
But I am realistic, too. I did not test positive for cromosomal abnormalities, however my myeloma is considered aggressive. I am a super positive, happy person. I try to stay in and enjoy the present. I try to avoid thinking of the future (slow painful death). God and prayer keeps me at peace, hopeful, but most importantly happy. I am grateful for my husband who is my primary caregiver, my mother who is 84 and just had successful colon cancer surgery. We did not have kids but my nephews and nieces are the best and I am so grateful for, my friends and my sisters in God - my prayer group friends.
Prayer can take you to the peaceful place we all long to be at. It worked for me, I am sure it will for you! Keep strong!
Thanks, Arnie. As always: good advice, and a clear perspective. Keeping it real while staying positive is a balancing act, isn't!?
I am sorry to hear of the your recent setback (hopefully that is all it is)- I also want you to know that they are not the "nice" words I said when I read your column. However by writing about it you have helped other patients (I know it is a small comfort).
I like Snips comment "Keeping it real while staying positive is a balancing act, isn’t!?"
Someone asked me did I think being positive helped. My reply - "I think being negative certainly doesn't help. Being positive I am unsure whether it does help but you are certainly a happier person when you go."
All the best,
Libby
Arnie, my husband was diagnosed with stage 3b in 2005 and the doctors back then gave him six months to live. He had seven fractured vertebra and was renal failure. He had kyphoplasty to repair the vertebra they could in Feb. of 2006 and after a few month of thalidomide & dex. His first Auto transplant in April 2006 & his second in July that same year. It is about that time I started following your and Pat Killingsworth's columns and I must say THANK YOU! As a caregiver of a patient who basically has left all the decisions up to me since day one your columns have given me great inspiration and knowledge. My husband did the Rev/dex/Vel for a few years and then one day it just stopped working and the carfilzomib basically did nothing so he had the super BEAM Auto in March this year and in June the Allo transplant. In between all of this he has had everything from MERSA to 10 bouts of pneumonia and Whopping Cough! But it's his positive attitude that has also kept him going and his crazy wife (me) I get my fuel often from your words & strength but I to am a believer in living in the reality all this will eventually end. His allogenic transplant did not take and his cancer is back less then three mounts later. He has started the Polly/ dex mix and again we are back in the hospital , this time with 103.4 fever. So again thank you for your many years of inspiration and fight fight fight ! The monster can never beat people like us we will meet again.
Pat Roof
Dear Arnie, you sure have inspired many with your excellent and pertinent columns. The balance between hope and the reality of our death at some unknown date is one all of us have to achieve. There is a new movement which started in San Francisco: The Death Café, open to all. It is an evening of free discussion about death and dying. It should be useful to break the ice among patients; I'm going to check it out and call you.
Of course, all readers join in wishing for you a new therapy to control the MM! Continue hanging in there.
Best wishes and talk soon! Jan
Hi Arnie,
I´m sorry to hear about your difficulties at the moment. I also want to thank you for sharing your story. It means SO much to many of us. YOU make life with myeloma a little easier!
Since my diagnosis 3 years ago I´ve tried to be hopeful. That doesn´t mean I succeed all the time. But I´ve felt, after the early months after diagnosis of total chock, that there is no alternative. After all what is the alternative? To live the rest of my life in total misery? Then I might as well be dead right away! No I choose to be hopeful! And as someone at this forum wrote, it is some kind of weird comfort to know that we´re all going to die one day.
You and I did our allo transplants at almost the same time and neither of us reached the result we hoped for. I have now been on Revlimid (and dex/betapred/prednisolone) for the last three months to stop the upward trend. After the third cycle my numbers went down a bit and my kappa/lambda ratio is in the normal range for the first time but lambda light chains are still above normal. I talked my doctor into giving me more DLI while on Revlimid and received it two days ago. So I´m hopeful!
Be hopeful and best wishes!
Åsa
Dear Arnie,
Thank you for your clear-eyed, touching column. You raise issues all myeloma patients must consider, although they are not pleasant ones. Your bravery and willingness to accept your situation while doing what is necessary each day is a wonderful example for all of us.
Gratefully,
Richard
Thanks everyone for your great thoughts and well wishes. As Snip has noted, it is a delicate balancing act between trying to keep it real and staying positive. The key as many others have said here is trying to live each day as well as we can, each in our own way. Enjoy and appreciate what we have and keep moving forward. Asa, we did indeed have our allos at about the same time and sorry to here that you too are having issues again. Cautionary tales that not everyone gets the home run result we are hoping for from an allo. But given the circumstances I was facing at the time, and even knowing what I know now, I would make the same decision again in a heart beat. At least we still have a fighting chance.
From a medical side, wondering if you would mind sharing- did your M-spike reflect the extramedullary disease? My husband has not had a measurable m-spike since his auto SCT in Jan of 2012, but he had many lumps (biopsied and shown to be extramedullary disease) show up starting in Aug, 2012. After several failed chemo attempts, as of May, 2013, thankfully a Velcade/Cytoxan/Dex cocktail seems to be holding things in check. It's frustrating, though, because since he has no m-spike, the only way to track disease progression is keeping a watchful eye for any new lumps/aches/pains. Hope you find your own "best cocktail" of chemos soon.
Emily, In answer to your question, as with your husband, my M spike does not reflect my extramedullary disease. My myeloma has become oliogsecretory and is not making m protein. My extramedullary disease was first found as a lump I felt on my chest wall. At this point the best way for me to follow it is with PET/Ct scans. However my kappa/lamba free light chain assay also has been somewhat of an indicator of disease activity and we are following that very closely as well. Wishing you the best and hope for better treatments for extramedullary disease.
Dear Arnie,
I too have relapsed in April 2013 and have been following your column since june 2011 original diagnosis of MM. The treatment path chosen this time is Revlimid and Decadron [dexamethasone] which has been extremely harsh. I've gone from walking normal to now being assisted with a cane for fear of falling caused by the side effects of the Revlimid ... short of breath, the shakes etc.
I too keep an attitude which people say "you are so positive" but I believe its an attitude of anger towards the MM. Dont laugh but I tell MM everyday "you arent taking me down without a fight" so if this is anger so be it.
I am so sorry for your relaspe and wish you all the best and cannot express in words what your column has meant to me. In the last 6 months since relapse a lot of strange things have happened to me and I truly believe this drug Revlimid is the cause but if this drug is doing its job and killing my MM then I will take anything and everything to stop or slow down this disease.
According to Myeloma Canada (I'm from Montreal) 10 Canadians are diagnosed everyday with MM. Its time for us MM to yell louder for better care and treatment just like the Breast Cancer Society. Before June 2011 I never heard of MM but I bump into someone every week who knows somone with MM.
Take care and my thoughts are with you.
Hi Arnie,
I'm very sorry to hear about your relapse. I was diagnosed last year (Feb.) and it's been a roller coaster. I only got partial remission after an ASCT so I was back on RVD. I had a pulmonary embolism in March so the dex was dropped but warfarin was added. Revlimid makes me very tired, depressed, gives neuropathy, etc. I call it poison to kill poison..
At first the fear was gripping but some things have helped. I told my husband that I want to go into a hospice if it gets really bad. They are covered in Canada and they give pain meds. I also wrote out my funeral requests--lots of good food, pix and friends meeting. I'm a Christian and know I'll be in the arms of Jesus when I die. Once I made these plans I've felt much better. It feels like "tying up the loose ends."
We need to advocate strongly for effective meds that will allow quality of life. There are brilliant scientists and technology that links our world. Complacency can be our enemy. I pray they find meds to extend your life, Arnie. Thank you for sharing!
Arnie,
You and I have a similar profile. I wanted to tell you about a new clinical trial that has just opened at Mass General Hospital and Dana Farber. It is phase 1 for a new drug TH-302 which is a hypoxia-activated drug used in combination with Dex and or Bortezomib. The drugs in combination are activated in parts of the body that are low in oxygen (hypoxic). Side effects include skin irritation. They hope to enroll 60 patients in the trial. I hope to be one of them. Your SPEP must be about .50. I have plasmacytoma's all over my body including my adbdomen (where you can not radiate) heart, breast, back etc. I think this is my best shot. I am told that traditional chemo does not effect these tumors because the chemo can not travel to the cancer because of it's hypoxic state. I never post on these board but wanted to make sure you knew about this trial.
Good luck.
Deb
Editor's Note: More information about TH-302 can be found in Beacon news articles that have discussed the drug, which can be found here:
http://www.myelomabeacon.com/tag/th-302/
Deb
That is interesting information, I will look into that. It does seem to me that extramedullary disease is a very different disease, requiring different treatments. Thanks
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