A Vietnam Veteran With Multiple Myeloma Speaks Up
I was diagnosed with multiple myeloma about five years ago, after complaining to doctors for a year or so of bone pain, especially in my ribs and legs.
At the time of my diagnosis, I was told that it was possible I might survive for another three years.
I have outlived that prediction and am happy I have. I believe that two autologous stem cell transplants have made that survival possible. I enjoy living every day, although I do have bone pain and other problems that prevent me from living the life I lived before my diagnosis five years ago.
I’m about to celebrate my 71st birthday, and I’m happy about that, too. However, when I read the personal stories in The Myeloma Beacon of those with multiple myeloma who are spending their winters snowshoeing and summers mountain biking, coaching Little League, and traveling to multiple myeloma conferences, I am envious.
The form of multiple myeloma that I have often gives me pains from my ears all the way to my toes. I’m receiving treatment at the Seattle Veterans Affairs Hospital, where I was told the cause of my disease is presumed to be my exposure to Agent Orange and other dioxins during my tour of duty in Vietnam between 1966 and 1967.
A major event for me is to be driven a couple of miles to a restaurant by my wife, Michele. Every time she hits a pothole, I get back spasms, even though my back was opened up and concrete was packed into my crumbling vertebrae. When Michele returns me to our home, I seek refuge in my zero-gravity chair, where I sleep away the next couple of hours. The biggest challenge I’ll take on the rest of that day is to read the newspapers, which I do with a lighted magnifier, due to my failing sight.
Myeloma has also turned many other simple every-day tasks into challenges for me.
For instance, I used to plant and maintain a large herb garden; now it is a major effort for me to pull loose a few stalks of rhubarb for a strawberry rhubarb cobbler. Making the cobbler is now an all-morning job for me. I can still do it, but I have to pace myself as I cannot stand for long without major back pain.
I also used to enjoy walking around Lake Wilderness with my wife a couple of times a week. We walked there so often that the crows actually knew me personally. Nowadays I cannot walk to the corner mailboxes to get the mail and the newspaper, and going to a movie theater or a concert is out of the question due to my mobility issues and my problems with prolonged sitting. Don’t suggest a wheel chair. They are torture for me.
I’ve read many personal stories in The Myeloma Beacon about others with multiple myeloma, but none much resemble me.
I admit that I wonder about the differences between me and those who have little or no bone pain and who are living active athletic and globetrotting lives. Perhaps they have a different kind of multiple myeloma than mine. Mine is not smoldering. Far from it. The fire has burned through and left me a shadow of who I once was.
I am now a sitting duck for pneumonia, which I’ve had a couple of times, and shingles got me bad once so far. The pain associated with the shingles was the worst pain I’d ever experienced.
In addition, my current dose of Revlimid (lenalidomide) seems to cause a variety of side effects that have turned me into a different person. They range from skin problems, such as hives and rash, to joint problems, to wrist pain, to digestive problems, and numbness due to the peripheral neuropathy that makes the bottom of my feet feel as though I’ve been walking on hot coals and my fingers freeze together like wet sticks in an Arctic winter.
Am I inhabiting a different realm of multiple myeloma, all alone?
I’d love to hear stories from others with multiple myeloma who recognize kinship in my story.
David Willson is a multiple myeloma patient living in Maple Valley, Washington.
If you are interested in contributing an article for publication in the opinion section of The Myeloma Beacon, guidelines can be requested by emailing .
Hi David, Thanks for sharing your story. If your myeloma dates back to starting up during the Vietnam War, it must have had the time to do a lot of damage to your bones. I am sorry to hear that you are having so much pain. Sounds like you are a real 'trooper' to manage with this though.
I remember the era of Agent Orange from my youth...it seemed like a bad idea at the time to defoliate the plants on the land, and I guess it was a bad idea to expose people to it also. It's really an example of how carcinogens are so dangerous to all of us.
Best wishes to you and your family. Maybe you will continue to write articles?
Hi David, as s 54 year old, myeloma came my way 3 years ago. I had to look it up on the computer in my hospital bed to find what it was.
Starting on revlamid after my sternum lesion was zapped, I am still on it today. Shingles has bitten me now and I don't know where it is all heading. Golf, a 3 game a week event, has now gone, work is out of the question and walking to the beach has been reduced to looking thru binoculars.
These changes at my age make me anxious for what lis ahead and the uncertainty of " what's next" is debilitating. Do I have 2 years or 22?
Looking in the mirror with 9 tablets in my hand wasn't what I planned for every morning and night
All the best
Alex
Hello David thanks for taking time and sharing your story. My overall condition isn't as bad as it was 1.5 years ago. I had 2 fractured vertebrae, ribs, and collar bone. I couldn't walk for about a month without being in excruciating pain, and had to use a walker. I couldn't sleep on my sides due to rib pain.
I was put on velcade/dex initially then had a stem cell transplant last summer. Afterwards i was put on Revilimd. I had a clot in my lungs from most like from the Revlimid so I taken off it for now. That was in March. So far im in remission and just taking it a day at a time.
Currently I have back soreness, but I am able to walk/bike for exercise and I went back to work about 6 weeks after my transplant.
Take care, keep fighting!
Hi David,
You experience sounds a lot like mine. Was dx 14 months ago. Was unable to get up from a chair without my husbands help. Was put on Revlimd and steroids 21 days o f revlimd and40mg of steroids one a week. Valicade shots every week, Also had 12 rounds of radiation. Before radiation was put on vicadin oxy and pain patch. Like you if husband hit pot hole I was in pain After 3 radiation the pain started to let up and by the 12 th felt 95% better. After 6 months my #'s went down enough that they took me off of every thing to get me ready for stem cell harvest. HAd that done in April. My #'s started going up so am now back on all meds except Valicade shots. Hopefully will never need transplant but have enough cells for 3 of them.
I get tired easily and know when I over do it as my back starts to hurt and I NEVER want to have the pain again like I did in the beginning. I am a few years younger then you and they claim this is not going to kill me I will probably die from something else.
There are so many new meds that I hope they can find one that will ease you discomfort. Hang in there and remember to file a VA claim as it is one of the illnesses that they claim is caused by Agent Orange.
David,
I was diagnosed May 2012 with Stage III IgA Kappa. I have multiple lyric lesions throughout. While I wish this disease never found me, it did with 8-10 compression fx in my back and a resultant loss of 5 inches in height. I'm on morphine 24/7. I have PN in all my toes and I wear a back brace. There are things I loved to do that I can no longer do. As you said there are things you can still do but it now takes much longer and the joy that activity provided has been replaced by just being able to complete the task. So I have changed my expectations. I've attempted to get back into hiking. It is too exhausting. I've substituted walking in the neighborhood for hiking in the mountains. I loved golf but my broken back makes that impossible so I gave my clubs a new home. I can no longer ride my bike so a new home for the bike. My theory is out of sight out of mind. I no longer work. I'm a criminal defense trial attorney and I miss it. My last day of work was two days after my 60th birthday, over 14 months ago.
So I think my journey may be closer to yours than others. As hard as it is to believe, I do enjoy what I still have. I enjoy my walks and reading. I enjoy the time I have with my friends and family. Of course I do the 'what if' . What if the MM would've been diagnosed before the broken back, then no morphine and I could still work etc. The reality is I have a new life and with it comes new and different challenges and joys. I accept that and work to stay focused in the moment which aids in the finding joy in my new life.
Hi David- Thank you for your story. I'm sorry for your pain and suffering.It scares me also. My ex husband and I were stationed at Fort Hood, Texas from 1965 to 1968. We both were diagnosed with multiple myeloma. Ken had an acute onset with high calcium, kidney failure and multiple bone fractures. He died in March, 2009 which was about 9 months after diagnosis. I was diagnosed in April, 2011. I went through limited chemotherapy- Velcade discontinued because of neuropathy and Revlamid discontinued because of blood clots in my legs. I have been off chemo for over a year and a half. My Stage 4 kidney disease is stable and my myeloma labs are also stable. I feel OK. I am tired and have constant foot pain. Anxiety and depression is always present because I worry about the future and I worry about my children-both parents with multiple myeloma. I think we were exposed to something during our stay at Ft Hood while the Army was gearing up for Viet Nam. Nothing I can prove.
Best wishes to you for your fight. What a strange disease. Mary
David, Thanks for your article. I have been thinking about somewhat the same issue lately. I, too, feel that most of the personal stories and comments here are about being able to return to former exercises and feeling feeling healthy again. This may be because when one feels good it's easier to write comments and columns. It's also possible that many people who use this site are younger.
I have just turned 70. Three years ago I was diagnosed with advanced breast cancer and smoldering myeloma. I was treated first or the breast cancer with heavy chemo, surgery, and lots of radiation. As soon as the radiation ended I took a 3 week trip to India and felt just fine. I resumed my life with yoga, walking and active social life. The breast cancer is in remission. But then the myeloma kicked in. In 2 years my SM had become full blown and I had a stem cell transplant in Oct. 2012 with no problems from the chemo or the transplant, recovering in the shortest time possible.
I though I was home free. It turns out the maintenance and recovery are much harder. I am in pain, tired, out of breath, unable to resume my former yoga and walking levels. I am doing gentle yoga, meditation, and walking much slower and not as far. I don't have the energy to maintain my former social schedule. I feel worse than before myeloma treatment. I think it's the maintenance. (Revlimid,dex,Velcade). I still expect that I will feel better sometime. But I keep wondering why no one else seems to have this experience. Most people describe me as being very positive and I am most of the time, but I'm wondering when I will feel better.
It's such a relief to read of your experience and I would love to hear more.
David, you are not alone!
My husband was diagnosed in April 2010, aged 54. He hasn't worked a day since due to treatment, pain, fatigue etc etc etc.
Radiation, Chemo, 2 stem cell transplants and more drugs than we'd like to remember. Let's not forget Shingles and like you, it has been the worst pain he has ever experienced.
Everyday, in some form, we are reminded he has Multiple Myeloma.
This wasn't the way we planned our retirement years but we do the best we can with each day we have.
When we're down we always remind ourselves that there is always someone out there worst off than us, you only have to read the newspaper to find them.
Take care David.
Hi Dave,
When MM hit me in 2009 I thought I was in the best health I had been in many years at 62, running 5 K races, losing weight, rocking my world until back pain laid me out like a hit and run bus! Kyphoplasy filled in three of my vertebrae with concrete and I too had a stem cell transplant that gave me just 18 mons of remission. At this writing I am going through my third set of RVD to get the ugly genie back in the bottle and achieve some kind of remission again. Seems I have spent the last three summers doing this. To add insult to injury I have Non-secretory MM (1% of all cases) which means there is no way for my oncologist to "see" where the disease is other than bone marrow samples...I have lost count of how many since 2009.
Pain was a huge issue that left me immobilized with a walker until two years ago. They tried to implant a pain pump in my belly but my body rejected it. The result was that they used an old favorite, methadone, and suddenly I was up and walking 3 miles a day without a walker, able to stand and cook for long periods but no running or even "a good walk spoiled" (golf). I had been on Fentanyl but the patches just weren't working and now three little pills a day keeps me moving.
There is so much to say Dave but let me echo what one of the other folks here did beforehand: Grasp each day, thank God for its light and the presence of those who love and surround you and make the best of each moment you are given. If you are a praying man use the immobility to fill heaven with your prayers. Find a good support group where you care share your story and be encouraged by both those who have survived longer than you or who are right where you are. We are so blessed here in Detroit to have a Gilda's Club where our group meets once a month. The fact that there are three active members who have survived more than 10 years with much more primitive treatment is so encouraging. Our group is led by a guy who is a survivor like us and who follows all the latest therapies. There is just so much good that comes from that group that I can't imagine going rough this without them.
Allow me to add that my wife, 4 daughters, 17 grand kids and one great grand are a huge part of my being more of a survivor than a victim of MM. I thank God for my level-headed, patient and positive wife, Ginny, who has kept me from being paralyzed by self-pity and pain. Our daughters helped us through bankruptcy, repossesion of our cars and moving to a tiny senior citizen, govt. funded apartment. Make sure you let those who have helped you on the journey know how much you love and appreciate them too.
We all have our different stories of how this wretched disease blew up our lives. We also have our individual tales of not letting it end our lives but rather rearrange our lives to make the most of each day we are given..
Excelsior! Dave, Onward and upward,
Dave,
If you haven't file the claim with VA, do it now. If you have and getting the run-around let me know. I know a VV who will slice through the red tape and get it done quick. You will not only get the medical, you will get a disability pension. That could help with finances of MM.
Eric
Dave,
I too have been massively and permanently scarred by mm (kappa form). In my case, x-raying F-111s in the USAF during the mid-80s was the catalyst.
The first obvious sign of something wrong was when T-12 vertebrae blew out: the resulting compression fracture compressed my spinal cord by 3/4", causing immense pain. While the disease is gone, the pain is still there, albeit managed fairly effectively by moderate dosages of fentanyl and chiropractic treatment (the chiropractor who put together my treatment regimen is one of the best in the business with nearly 40 years of experience). Shortly after my diagnosis in June of '08, we learned to take life day-by-day, depending on God for the strength, courage and wisdom to get through the treatments and stress of our 'newly-assigned' lifestyle.
Though the tandem transplants were five years ago, and we completed the maintenance therapy three years ago this fall, neuropathy still lingers in my finger tips and toes; energy levels are much lower; and my spinal strength is still highly limited due to the compression. Yet God has helped us adjust to the 'new normal' of daily life. I am a pastor, but have seen and heard how God has worked not only in our lives, but in the lives of other myeloma patients as well.
One of the things I can recommend to you is to look for the 'small' blessings each day brings: birds singing in the morning; a beautiful sunrise or sunset; the ways in which persons around you share love with you. When we begin looking for such things, it is amazing to find how many things we can thank God for each day. Also, try to surround yourself with positive people as they make survival of any disease much more likely (not to mention, enjoyable). Avoid those who are only sympathetic as their words, no matter how good they may sound, are empty. Such people cannot empathize with your pain or the aftereffects of a destructive chronic illness. Also, try not to compare your condition with the 'superhero survivors.' As one who lived with the disease eating on my body for some 20 years, I too have to avoid their stories. I'm happy that they can get on with their lives, but know that survivors like us have had no choice but to find new ways to enjoy life.
Blessings to you, Dave, and to all those who are living with mm or it's aftereffects.
Kevin
David,
I, like you, often wonder the "what if" questions that always come after being diagnosed with MM. After six months of extreme lower back pain and four doctors giving a wrong diagnosis, I was told in January 2010 that I had MM. I had numerous lesions, but my MM was very focused and destroyed the lower 70% of my sacrum. With all the nerves for the lower half of my body passing through that war zone, leg and foot pain was the norm and sitting or bending a lost activity. By April I could not even get out of bed and was checked into the hospital. For the next 30 days there it was more radiation, pain pump trials, etc. but nothing worked. How do you get out of bed without bending? Finally a young therapist found a machine to lift me and I stood up for the first time in 45 days. Muscle loss and PN from the thalidomide meant loss of control of my left foot and walking was going to be a new learned activity for me. I could not have a stem cell transplant unless I could get out of bed and walk on my own, so that was the goal. A walker at first, then a crutch, then a cane and finally success! I had my stem cell in August 2010. Sitting was and is still a painful process. Driving/riding in a car, movies, restaurants, and even visiting the john all require sitting. Ouch. I am now on Revlimid every night and Oxycontin 3X daily with a Hydrocodone kicker for pain as needed. The Oxy does a pretty good job taking the edge off the sacrum bone pain, but the pain is always with me. I had shingles on my torso in January 2012. I was already on enough pain meds they could not provide any additional. A 3/4" lesion through left femoral neck required insertion of a pin/rod earlier this year to prevent future breakage and hip replacement . My blood numbers are improving and I am in complete response at this time. I am always tired, have no energy reserves yet can't sleep more than three hours at any time. My wife has given up asking how my night was. PN pain is ever present in my left foot and toes and I have hot flashes and total body sweats (like being in a sauna) at least twice a day. The latest focus is my messed up Testosterone levels, and trying to find something that works to get it back in line.
I was not in Viet Nam, did not live on any army base or next to a chemical plant. I did however consume gallons of Diet Coke with Aspartame as did many others that now have MM. Possible link, who knows?
My wife is an angel and my two daughters and son are a wonderful support team. Two sets of twin grand kids and a new beautiful little girl are the best medicine yet. Faith, family, friends and a super oncologist have been my path through the MM minefield.
My best to you as you battle this evil disease. May tomorrow be better than today and the next better than tomorrow.
Ernie
I am bowled over by the responses to my little piece. I would love to be able to respond to each and every one of you in the detail and emotion that you deserve, but I can't do that, due to lack of energy. I will try to answer generally in a way that lets you know that I read each response carefully and learned much from many of you.
First of all, you helped me realize how lucky I am to have the disease the way I have it. I've learned to live with what I have and am doing fine now. What some of you told me really hit me hard, especially those of you with serious pain and mobility issues. I've had both, but am getting around pretty good these days without a walker or a cane, both of which I have had to use in the past. Also I have not had to use a wheelchair in a long time, for which I am thankful.
I take an Oxycodone in the morning and at night and they have allowed me to deal with my pain. I am not that upset at some pain. It is nausea that really upsets me and keeps me from working and enjoying the day.
As one of you mentioned: the birds and the sunset and that sort of thing are there for us to enjoy. The little things. I take great pleasure in the hummingbirds who visit the hanging fuchsia just outside the window where I spend much of my time in my Zero Gravity chair, reading and writing notes for the book reviews that I do for the VVA Veteran on-line site. I have a great need to work, and I take great joy in working and then seeing my work in print. And the hummingbirds come and go all day long, as do the wrens that nest in the edge of my herb garden. Sometimes several flickers will land on the lawn I can see from my window and peck the lawn for worms.
One of you mentioned "super-heroes" of multiple myeloma, a phrase which I wished I had coined. I will use it now, for sure. Thanks for such a great phrase. From now on, I will think of those with multiple myeloma who are skiing the slopes of Mt. Rainier as MM super heroes, also those who are mountain biking the foothills. My hat is off to you all.
One of you advised me to make application to the VA for disability. I wish to assure you that I did that first thing. I came home from being diagnosed with multiple myeloma and I immediately got the forms and sent them off to the VA for that endless process to start. To be fair to the VA, which gets lots of brickbats thrown at it, my claim was processed and I got 100% disability rating in about six months. Also I must give much credit to the VVA professional who guided me and the forms through this tricky process.
I was very interested in how many of you mentioned that you had had shingles. I had no idea that this was a common affliction that can beset multiple myeloma folks. That opened my eyes. My favorite book of the Bible is Job, of course, and my reading of that book during the shingles time helped me get through that awful period. Shingles put pain in perspective.
And the body sweats. I don't think I even thought to mention them in the original article, but yes, I know what that is like. I sometimes awaken at night dripping wet from sweat and have to mop up with a towel. Where does that come from?
Coke with Aspartame? That could do it? Yikes. Nothing is safe. I was always a drinker of Coke, the original kind with sugar with lots of rum, back in the Bad Old Days, not now, not for years, so guess that was one risk I did not take. One of a few.
Yes, this is an evil disease, and love of family is a big help. I always refer to my wife as my Angel of Mercy, and she continues to be. Our two children are also wonderful and never let me down. My daughter wrote a massive paper for one of her science classes at Whitman College on Agent Orange, so she made some lemonade out of the lemons we have been assigned. She got an A in that class. I enjoy discussions with our son on Boxing and movies and Game of Thrones and look forward soon to another 4th of July when we'll eat BBQ and explode noisy fireworks together.
I apologize to those of you I've overlooked in this long and rambling answer, but I've gone on long enough this time. Thanks again to all of you who responded to my article. You were wonderful to take the time.
Yours,
David
David,
I have often wondered how you were doing and was eager to read the article in the VVA. I read your reviews and have even done a few myself. I am currently reading a book that I compare to some your earlier writings, REMF Diary especially. It is called DEROS and is different just as the war was different for many of us. This deals with the end years when there was no doubt about the outcome any more. I hope that your struggles as Job ease and that your are granted the ease of life that you deserve. God bless and keep you and your loving family.
Peace, John
When I awoke last night because the bottoms of my feet were burning as though they'd been steam-ironed, the response to my article that I found myself dwelling upon was the one from Mary Read. She and her ex-husband spent years stationed at Ft. Hood and both were later diagnosed with multiple myeloma. I don't believe in coincidences. Something must be rotten at Ft. Hood or something must have been rotten there back then. I agree with Mary that they must have been exposed to something while at Ft. Hood. Of course, the Army is not talking. And Dow Chemical wouldn't either. It seems a conspiracy of silence sometimes to me. Here is where I usually invoke the prediction of President Eisenhower abut the military Industrial complex. What a wise man he was in many ways! How can little people hope to do battle with forces so powerful? We really can't, can we? That is the sort of hopeless stuff I think about during my dark nights.
Yours,
David
Hi David I am also a Vietnam Vet(got a Vietnam service medal to prove it) spent 10 months in the Tonkin Gulf in 1965 working the flight deck of the USS Midway for VA-25 (last of the Prop driven attack planes)we delivered on target 6,000,000 pounds of bombs and several thousand gallons of Napalm plus 1 toilet -goggle -VA 25 Toilet Bomb-for live video , we were making the napalm our selves, I too attempted to file a claim with the VA after I came down with MM in 2004 thru the American Legion -how ever they stopped doing any thing for the G.I.'s after the VA rejected all our claims -ten the A.L. threw all my paper work away - 5 years down the drain- the VFW is now attempting to gather up the pieces- I was diagnosed in 2004 after a couple bouts with severe back pain- turns out I had 3 lower spinal vert. that were shattered - I am now 4" shorter than I was upon discharge from Uncle Sams Canoe club, can stand for only limited lengths of time due to back pain and some really nasty painful lumps that have appeared on the bottoms of both feet (my hands also)I am fairly comfortable lying down or sitting and can still mow my lawn with a riding mower if I don't hit any real bumps or pot holes, There is a group called "The Blue Water Navy" that the VA considers throw away people like my self - - BRICK BATTS - - I'd like to throw some thing else at the them. well all the best just do what you can. N.G.
I appreciate the responses of two Vietnam veterans, one known to me before and one who is new to me. Welcome, Brothers. I am saddened by the situation outlined by Nipon Ginko. The way the VA Claims by Blue Water veterans have been treated by the VA is a crime--a blatant denial of facts and history--but typical of the VA. They are quick to hand out millions in bonuses to their employees while veterans' claims are backlogged in the hundreds of thousands. What will it take to change that agency for the better, so that veterans dying of cancer (and other service connected diseases) can die in dignity? Perhaps their yearly bonuses should be put on hold until real progress is made in processing veterans' disability claims? I know, that is a radical idea, but perhaps the time for such a step has come. This people of this country seem eager for war against our many enemies, but slow to take care of the veterans who suffer from their wartime service. Maybe our wars should also be put on hold until veterans' needs are addressed?
My multiple myeloma gives me plenty of time to ponder such things as the above, especially in the dark of night when others sleep and I lie awake thinking about the choices I made that brought me to this place in my life.
Yours,
David
David,
I am very glad and relieved to hear of the VA compensation you receive. You deserve the 100% disability, but do not let that designation, nor your physical condition to determine your quality of life. The damage to my spine is severe, but I hope to never view myself as a 'cripple' because of it.
There are definitely problems within the military and even VA system regarding veterans. As an AF vet whose work primarily involved x-raying F-111s during the '80s, I unfortunately was too naive regarding the AF due to the love I had for my work. As a result, I did not keep any of my discharge paperwork regarding the type of work I did, nor any health records. I also filed for VA compensation, which was ultimately denied two years later by the AF refusing culpability by redacting all radiation records to zero -- effectively 'proving' that my work did not involve radiation in any form, and also leaving me with only one option: to sue the gov't -- in a 'he-said, she-said' type of lawsuit.
Hopefully stories like ours will inspire all current military members to keep copies of everything they do as well as all records regarding their service to our country. Ours is no longer the Constitutional gov't it was intended to be, hence the secrecy from not only the military, but also its suppliers. As Americans, we should rightly be ashamed of what we have allowed our gov't to become. Those in control may look at us as pawns who matter not, but the game of chess proves that even enough pawns can bring down the king.
Blessings,
Kevin Rettig <
David,
It just occurred to me that one of the challenges you deal with is nausea. I also had nausea when I was on high-dose oxycodone, but since my doctors switched my main pain med to the fentanyl patch, there has been no nausea. I do still have lots of sweats, and have learned that this is the way my body initially reacts to rising pain levels, even before I 'feel' the pain. For some reason I also deal with occasional hot flashes, cold flashes, cold sweats and sometimes a combination of the above. I have come to except these as "man-opause," and it really has helped me appreciate and empathize with what women endure as their bodies age.
Kevin <
I was 45 when I was first diagnosed in 2009. I had symptoms for three years and received treatment for arthritis. After six compression fractures I changed primary care physicians. He put me through three months of intensive testing. When I saw an oncologist for a bone marrow aspiration her opinion was that I probably didn't have cancer. The following week she had me sit down. She told me I had a rare form of multiple myeloma that does not secrete any proteins. This, she said, is why it went undetected for so many years and why she was surprised when the biopsy came back positive.
I am blessed that I achieved a complete response prior to a stem cell transplant. However, I am in constant pain due to the damage that was done to my body during the three years I went undiagnosed. Mostly it is back pain that radiates but sometimes I get headaches and other pain.
I am 49 years today and far less active than I used to be. I am on disability -- Social Security and a policy from my job -- and do not work. I wish I could play sports again but a good day for me is when I can take a couple laps around the supermarket pushing a shopping cart. I am ok with this. Last month I saw my oldest son graduate from high school. Four years ago I never thought I'd live to see that day.
Like you, I am a Vietnam veteran who, it's believed, contracted MM from Agent Orange back in 1966. I was given a prognosis of 6 months at the time of my diagnosis in February of 2008. When I outlived the prognosis, some of the best oncologists and hematologists the VA and Seattle Cancer Consortium told me that now I REALLY only had six months left. I am pleased that I celebrated the five year anniversary of my prognosis five months ago. I am a non-secretor and so I don't face a lot of the issues that elevated proteins create, instead the cancer eats away at my skeleton, lesion by lesion. Certainly I suffer challenges, it takes forty-five to sixty mg of morphine SA Contin twice a day to keep reasonably comfortable because of bone pain. The peripheral neuropathy from chemotherapy has taken up permanent residence in my feet and there doesn't seem to be anything to be done about that. Yet I keep on truckin' as the expression goes, and take advantage of every moment I can. It's easy to become depressed and dejected by the personal enormity of our illness and the disabilities that take from us so many things we used to take for granted. But there is life after diagnosis --something I found hard to believe in my private thoughts. But I have found new things to do to pass my time, amusing, educating, and challenging me and keeping life interesting and welcoming. MM isn't my life, it's just a part of it and I work every day to make it as small a part as I can. There is tremendous support all around --as you have seen here-- and you are never alone in your efforts. We are brothers and sisters in an odd extended family, each of us with something to offer to the others.
Welcome! It isn't all bad.
I continue to be amazed and gratified by the responses to my piece. The responses have made me think and reappraise my situation with my multiple myeloma and how it has changed my life. Some of the responses have hit me so hard they have caused me to feel that I am lucky to be affected in the ways I have been affected. The pain I have is annoying, but I can easily live with it with the help of a couple of oxycodone each day, one in the morning and one in the evening. Bob's recent comment spoke loudly to me, as he is a Vietnam veteran who was in Vietnam close to the same time I was, and he was also diagnosed around the same time I was. I was never told that I had only six months to live. I am glad I was not told that. Being told I had about three years to live was hard enough to deal with. Bob raises issues that I know nothing about. I will discuss with my Seattle VA oncologist just what it means to be a non-secretor. I don't remember that term ever being used by my doctor. I don't think that myeloma is still eating away at my spine. I hope not. I used to suffer from depression, but that was prior to being told that I have multiple myeloma. Now I'm thrilled with every day I get.
Matt linden's comment provided me with food for thought. Mostly what I thought was that I had lucked out by living 65 years without being told I had multiple myeloma. He was told at age 45. I had not done much living at that point in my life. The twenty years from 45 to 65 were my best years. It's been a long time since I've been in a supermarket, so I respect that Matt can do a couple of laps with a grocery cart. Could I do that? Maybe, but I am not going to try that any time soon. I know what he means to live to see the day his oldest son graduate from high school. When I was diagnosed I thought I would not see my youngest daughter, Allie, graduate from high school. Now almost five years later, she is within one year of graduating from college. Thanks to the two stem cell transplants and the Revlimid and the care of my fine VA oncologist I'm still around and doing pretty well. I think I'll witness Allie graduating from college. It seems likely.
As Bob Says, we are brothers and sisters in an odd extended family, and each of us does have something to offer. Thanks to all of you for what you have done for me.
David