Went in for Sciatic Nerve Pain, Came Out with Multiple Myeloma

By bklynite1953

2 min read

Wow, where to start? Well, I can say I moped and cried for a week. After that f**k it. Must be my Brooklyn upbringing. I believe getting diagnosed with multiple myeloma is harder on the family and friends around you because they are helpless to do anything except comfort.

How long do I have, Doc?

The first time I saw my oncologist, I asked her, "so how long do I have to live?" Her answer was, "we really don't know but we have great treatments available". I told her I'm 66 and still have my parents, I can't die before them because "no parent should bury a child". Therefore I told the doctor "If you can't tell me anything, I could leave your office today and get hit by a truck and die, or have a house fall on my head". Yeah, I'm a sarcastic sob LOL :) So, I'm going to do whatever the heck I want to for the rest of my life.

I went through radiation for 25 straight days and that really was nothing. It took longer to drive back and forth than it did to receive the treatment. Chemo also for the first 3 months. I had horrible images about it from the old days when they treated people, but it really was no problem at all for me. My team is the best, most compassionate group of doctors and nurses, and that made it easier.

Family, friends, and a bucket list

After 3 months, they gave me a break and sent me to the City of Hope in Los Angeles for an SCT. Oh sh*t was that hell. But here I am 1.5 years later surrounded by the best family and friend a person could have, especially my wife of 37 years who is my guardian angel.

I am on maintenance meds Revlimid (f**king way too expensive, it's a crime). The cancer is like a bad dream now but the bone pain it caused is an everyday hardship. Some days a wheelchair, some days a crutch. My son got me to ride on a Zamboni during a pro hockey game (was on my bucket list). What a thrill. I have 8 grandkids that I love and they love me. My life is good.

Living my life

To close my mantra is this: I have had clean drinking water for my entire life. I have had access to good medical care for my whole life. I have never gone to bed hungry. I have always had a roof over my head. I have had it better than 99.9% of all the people that have ever lived on this planet. So, no feeling sorry for this guy!

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Daniel Malito Moderator
<inline-mention user-id="3638876" username="bklynite1953"/> I hear you, I went in for a bleeding ulcer and came out with chemo for lymphoma. It only took a short four months of being in the hospital! How awesome. Keep on keepin’ on, DPM
bklynite1953 Member
hi Daniel we are a privileged bunch of people, we are LOL. thanks for the nice words. glad you are still around also. its an everyday fight physically and mentally but im brooklyn tough eventhough i live in socal now. I know you cant beat MM yet but i give it a good kick in the ass every day
Yolanda Brunson-Sarrabo Moderator & Contributor
My fellow Brooklynite- What Up!! 😀 Continue doing you while adding this anchor on your other shoulder. Based on your energy and fight... you got this! Best!
1. bklynite1953 Member
 thank Yolanda. Im not sure of what each day will bring but when I hear about a 2 year old with a blood cancer I cry. I see the commercials for st. judes childrens hospital and know these are the heroes and really courageous humans. they are my inspiration. I am glad this site found me and I hope I can contribute to this group
2. Yolanda Brunson-Sarrabo Moderator & Contributor
 Welcome, <inline-mention user-id="3638876" username="bklynite1953"/> so happy you found this site as well. We have a great group of people who can relate to various situations. Yes, I agree those St Jude commercials are a tear-jerker; you know we just don't know what the days will bring us, which is why living your life like it's golden "Today" is a must. You are courageous as well as you take this new step and a new journey. Best!
Jim Smith Moderator & Contributor
Hi <inline-mention user-id="3638876" username="bklynite1953"/> . I like your mantra. We often take for granted what we have in this country. Still, having cancer is the pits. Your attitude is inspiring; it kinda makes us reconsider our pity parties.
1. bklynite1953 Member
 Hi Jim thanks for the reach out. yeah cancer is the pits but there are so many things that could be worse and many people are going through them right now. Maybe I am lucky that I am not as sick as a lot of other people. I guess it would have been nice not to get cancer and maybe be rich, but you know my life is full of richness with the family and friends around me. T o have grown up in brooklynin the late 50's and 60's with everything NY had to offer was the best childhood in the world. And then in my 20's to move to San Diego and start a new life with a new wife that I have grown older and wiser with along with 4 kids, 8 grandkids along the way, all healthy, I have been fortunate. I just lost my dad this year but he was 90 and lived a long and healthy life my mom is still around at 87 and we are having her move from Florida to live with us in california. with dad gone and all her friend dying , we want to give her some quality of life ( she is an amputee confined to a wheelchair). for me this is just a huge honor to take care of her not for the rest of her life. after all she was there for me my whole life. its what family does and should do. well too much rambling and a little too much tooting my horn at the end but I am proud of being a good son.
2. Jim Smith Moderator & Contributor
 As you should be. She is fortunate to have such a son.
Crystal Harper Moderator
I just love your positive attitude! You're so right- anything can happen to us whether we have cancer or not. We should all be striving to live life to the fullest. You're awesome and I hope you keep on knocking out all those bucket list items! What's next on your list?
Mark Member
I went in for the same issue. Have Multiple myeloma and still have sciatic pain 5 years later..
1. Paula Rosado Moderator
 <inline-mention username="Mark" user-id="3637440"/> It's a terrible pain. It can be incapacitating! I've had some xrays recently and a diagnosis emerged for the pain. I was lucky enough to see a physiotherapist and I do exercises to relieve the pain and work things out. I also take glucosamine tablet daily. There seems to be flare ups where I need to do more for myself than other days. Is this your experience too?
Mark Member
Part is because of tumor by peraformus putting pressure on sciatic. Radiation caused permanent damage. Pain is almost constant, manageable with medication. 
1. Paula Rosado Moderator
 <inline-mention username="Mark" user-id="3637440"/> That is terrible! It's like trading one problem for another problem. Patching ourselves up and living with chronic pain takes its toll. I've found naproxen to be a cheap and effective medication for this pain. My doctor told me I could take it for weeks at a time without any side effects. This is how I manage flare ups. How do you manage the chronic pain? I can imagine there are many of us struggling through that.
Avenger1948 Member
Hello........I like your attitude! I've had CLL for quite a long time now, and have been in remission for about 8 years. I had a heart valve replaced in 1998 with a mechanical valve. My overall health I would say is "good". Concerning the subject of how many years or months do I have left, I have decided that if I was on the downhill slide to death in the not too distant future, rather than lay around being miserable, I would be high on medical marijuana most of the time. I currently consume CBD oil for arthritis and have had amazing results. My dog has also had amazing results with CBD for her osteoarthritis in her hips. I mention medical marijuana because of an article I read about Cathy Jordon, who has been called the patron saint of medical marijuana for the state of Florida. Cathy was diagnosed with ALS in the early 1980's and given 2 to 5 years to live. After slowly going downhill for a few years, Cathy was depressed and hurting physically to the point of considering suicide. A friend of hers came by to visit Cathy and gave her a joint to smoke. As a result of smoking weed, she started feeling better and no longer contemplated suicide. Cathy's death sentence with ALS was put on hold and she is still alive today after nearly 40 years of smoking marijuana. Cathy petitioned the State of Florida for years to legalize medical marijuana and finally, as a result of her persistence, they did. You can learn more about Cathy's situation by Googling "The Cathy Jordon Story". I don't know what medical marijuana would do for cancer patients, but I have read of positive results from some studies. I'm not recommending that people consume medical marijuana but I know I will under the right conditions. I do hope this will encourage folks to at least educate themselves concerning medical marijuana.
1. Paula Rosado Moderator
 Hi <inline-mention username="Avenger1948" user-id="4736939"/>! Thanks for your perspective! Where I live we have both privately owned cannabis dispensaries and government owned marijuana dispensaries. A prescription isn't needed, but a conversation with a consultant is a very good idea. There is so much to consider! There are different phytocannabinoids, terpenes, flavonoids within different strains of cannabis. There's Indica, Sativa, Ruderalis and Hybrids all with their own benefits.