You're listening to A Day in the Life Podcast, brought to you by the International Myeloma Foundation. We hope this podcast provides messages of hope and resilience, for those in the Myeloma Community and beyond.

Today we are talking to Andy Sninsky, who was diagnosed with multiple myeloma in 2008, at the age of 59. Some of our listeners may be familiar with Andy, who is the self-described that crazy guy on a bike. Andy claims this moniker because despite a myeloma diagnosis, undergoing chemotherapy, radiation, and an autologous stem cell transplant, Andy has managed to complete multiple bicycle tours of Europe, and across the US and Canada.

Transcript:

IMF Communications:
You're listening to A Day in the Life Podcast, brought to you by the International Myeloma Foundation. We hope this podcast provides messages of hope and resilience, for those in the Myeloma Community and beyond.

Today we are talking to Andy Sninsky, who was diagnosed with multiple myeloma in 2008, at the age of 59. Some of our listeners may be familiar with Andy, who is the self-described that crazy guy on a bike. Andy claims this moniker because despite a myeloma diagnosis, undergoing chemotherapy, radiation, and an autologous stem cell transplant, Andy has managed to complete multiple bicycle tours of Europe, and across the US and Canada.

In fact, today we're catching up with him as he is mid-tour in Orangeville, Ontario, Canada. To begin, I want to say welcome, Andy. My first question for you is how many miles have you tracked on this particular bike ride so far?

Andy Sninsky:
Okay. This particular bike ride, I have done 300 miles in about five days, to get from the border of the USA and Canada up to Orangeville, which is kind of a suburb of Toronto.

IMF Communications:
And where is your finish line for this ride? How many more miles, and where's the location?

Andy Sninsky:
At a thousand miles. I decided this year that I would ride a thousand miles. So, it depends on how much I do and see, and where I want to go, because I have no idea when I wake up in the morning, except I'm headed towards Lake Huron again, in a place called Tobermory to catch a ferry sometime in the future, which will carry me to the largest island in a freshwater lake, in the world. And it's called Manitoulin. And it's someplace that I've been once, for several hours, and I found it fascinating, and I want to go back, and the way I'm going to do it is by bicycle.

IMF Communications:
Wow. You're man of adventure for sure. So, to start off this interview, I wanted to jog your memory a little bit, and for our listeners, if you can recall what it was like in 2008, when you were first diagnosed with multiple myeloma. How did you get the news of that diagnosis?

Andy Sninsky:
Oh, it was Earth shattering for me. I had just come back with my wife then, from Costa Rica. I had terrible pain in my back and my ribs. I didn't know why. I thought I'd broken a rib lifting a kayak, and I just thought maybe I'm getting a little old for this outdoorsy stuff.

And we got back to Europe, into Vienna, and in May of 2008 the doctor that first saw me, a GP said, "I don't know what you have, but it's not good, and we're going to try to get you in a hospital right away." So, I was in a hospital for about nine days, because it was 2008, and they couldn't find out what was wrong with me. They did x-rays of the rib and all that stuff.

Finally, after a multiple series of blood tests, they came up with a diagnosis of multiple myeloma. It shattered me, because I was always healthy and outdoorsy, and liked to do this kind of stuff, and I thought my world was ending. So, they sent me to a specialist, one of the people who works with IMF from Europe. His name is Dr. Hines Ludwig, and Hines is now a friend, who is also my doctor when I'm over there. He makes sure to take care of me when I do European trips, but basically, I was in such pain that I just didn't know what the next step was.

IMF Communications:
And if you could, take me through what your treatment journey has been like since that time, and if you're undergoing any treatment right now, or if you're holding steady and how things are going for you.

Andy Sninsky:
My treatment then, just like you said in the intro, I had first radiation, 15 bouts, to help to remove the lesions from my ribs, and back, and spine. And then I was very weak. I went from a normal a hundred and sixty, sixty-five pounds, down to 119 pounds. So, the myeloma was doing something to eat me from the inside out, so I lost a lot of weight. I was feeling very lethargic, and I just was in so much pain that they began to put me on the different pain medications, Norco and things like that. And I wasn't getting better.

So, after the treatment of radiation, they said, "You have to go home now to build up strength. Eat more." I couldn't eat anything, because I was so sick, but I was force fed by my wife. "Keep eating, keep eating." And I got a little bit of weight back.

But what really helped me, and it's a little further down. I could not go home because we had a three-story house, and I couldn't climb two stairs. So, my wife said, "I'm going to work on this, and find a place where we can stay, so you can get stronger to take the chemotherapy next." And my chemotherapy was due in about two weeks, if I built up enough strength. Two weeks to three weeks. We went to Heiligenkreuz Monastery, in the Vienna Woods of Vienna. The monks adopted me as a special intention, to make an abbot for more [inaudible 00:05:50], a saint. They want to make this [inaudible 00:05:52], for a saint. And to do that, they need two miracles. So, they wanted me to be one miracle, and then they would find something else that could be a miracle, for the second one. They said, we don't care that you're not Catholic. We care that you're cured. And because if you're cured, then our prayers are working. And I said, "Hey, if it works for you, it works for me too."

After the two weeks with the monks, they continue to pray for me today. But then I went into chemotherapy, in June of 2008. I began it in 2008. The summer was completely lost to me. I didn't know what happened. When I started treatment, it took about eight months to get through. I had complications. I had developed herpes, developed this, developed that. And I was only staying very weak. I was using a walker at that time. And when I came out of the hospital, I was in a wheelchair. When I went to visit the monks, they took me in an ambulance. That's how sick I was. I went to visit the monks the first time, they drove me in an ambulance because I was that weak.

And I thought that was the end of the road for me. So, the chemotherapy was very rough. It was the Johnson & Johnson and Jansen Selig trial study I was in. I don't know the name of the trial study, but Dr. Ludwig does. But Indiana, there were 16 of us, and I did average. I went through it. Then they were going to try and do a stem cell transplant, but I developed, again, complications with herpes in my body, so they had to delay it. They did the harvest in September, thinking that I would get my new stem cells at Christmas. But it didn't happen till Easter, the following year in 2009. So, I had to develop, I had to get stronger. I had to get the ability not to be sick, so that the stem cells that they harvested could be reintroduced. Now, usually when people get their stem cells harvested, there's millions and millions of stem cells you work with. Dr. Ludwig said, "Andy, we have got one more than you need. The normal cost is 3 million for one transplant. You had 3,000,001." He was kidding, but it was nip and tuck if I had enough stem cells to do a transplant.

So, the transplant happened in April of 2009. I was still using a walker. I was very weak still. I was beginning to get some weight back, with the help of my wife's saying, "Eat, eat, eat. You got to eat." And I said, "I don't like any food." But after a while, it all began to come together. So, 2009, April, I had the transplant. By June, I was getting antsy. I was using Nordic walking sticks to walk around, because of the pain in the spine, and the ribs. And I walked all through our village. It was called Klosterneuburg, in Austria. And it's a suburb of Vienna, and I was still seeing the doctors like every week, nearly. I wasn't, in my opinion, improving, but I was improving enough that I was beginning to agitate myself, that I wasn't dying, and yet I wasn't living how I used to live, before I was diagnosed.

So, I asked my wife one day, "Hey, I walked all over town. I walked up and down the river, the Danube. I've seen everything and everybody. I need to go further on." We had bicycles anyway, so I said, "How about I hop on a bicycle?"

"No, you're not hopping on a bicycle, because if you fall down with your damaged spine, damaged ribs, you'll become paralyzed, and then it'll be a headache for me and the hospital in Vienna." And I said, "Yeah, but if I don't do that, I'll just wither up and die anyways." So, I said, "Come on, let's give it a try." So, there are these two protective lions, down in Hallstatt, which is about six miles from the house.

I thought if I could ride six miles, I could ride back. That'd be 12 miles. That'd be a nice ride along the river. No roads. It's all bike trails. So, I thought, "Who's going to bump into me? Or will I fall down?" And I convinced her with a cell phone addition, set to 911, that I could go out and give it a try.

To ride six miles in 2009, in July, took me three attempts, because I was just too tired. I couldn't go a block, or two blocks, and I would just go home and say, "Nope, that's not going to work." And finally, after about August, I was able to ride down to the lions, and back. And then I said, "You know what? I'm going to make it." And that's when it began. And then I began to ride my bicycle further and further. And in 2010, and we came back to California, and I hopped on a bicycle here in 2011. And I haven't looked back. I've ridden all over the USA, for IMF, all over Europe, Australia, and now I'm in Canada for Myeloma Canada.

IMF Communications:
That's amazing. So let me ask you this: you mentioned you were very active before the myeloma. You said you mentioned kayaking. When did you become passionate about cycling? Was this before or after your myeloma diagnosis? Had you done long distance rides like this before, or was this new?

Andy Sninsky:
No. In 1968, a buddy who was five years older than me, who passed just recently last November, from melioidosis, went through all of his friends at university. I was just entering University. He was just leaving, and he wanted a ride back to his hometown in New York State. And we lived in California, at the same university. So, he went through all of his older friends, and they said, "You're nuts. No one's going to ride a bicycle across the United States. Too hot in the summer. You'll get run over by a semi." Whatever. And in 1968, he finally got down to this kid, me, and he said, "Hey kid, you want to ride across the United States?"

I had just turned 19. I had just gotten rid of my old bicycle, that I used at the university, and I said, "No, I'm driving a car." Then I got to thinking about it and we talked some more, and he said his name was Terry Matthews. "If you pick the route, since you're a geography major, and we end up in New York, I don't care where we go, as long as we're back in time for school." For my school.

So, I said, "That sounds kind of interesting." So, I asked my mom and my dad, and they said, "Sounds kind of nutty." Terry came over, and we all talked together, and it was May of 1968. We hopped on the bicycles to decide to go, and I said, "I want to see an alligator in the wild." That was my reason for going with him. So, I thought all the alligators were in the Everglades. I didn't know we would start seeing alligators in East Texas, around Houston, and not stop seeing them till North Carolina. But I saw umpteen alligators on this journey across the USA. We had many, many adventures. That was the first trip.

After that, I went again, when I got out of the Army in 1970. When I got out, '73, I took a trip across the United States again, from the Queen Mary in Long Beach to the Washington Monument. I did that once in 19 days and five hours. I was self-supporting, and I just booked it. I averaged 142 miles a day, and I was in the best shape of my life after the military. And my best day was 203 miles on a bicycle, in Kansas.

IMF Communications:
Wow.

Andy Sninsky:
With a tailwind. And after that trip, I got into whitewater rafting, kayaking, and all the adventure sports that kept me going in adventures all my life, until the myeloma diagnosis in 2008. And then I had to change gears, and I was thinking walker. I was thinking wheelchair. I was thinking stair lifts. And all of a sudden, I began to think about bicycles again, in that summer of 2009.

And like I say, I got stronger. I said, "I can do this." I told my wife what I'm going to do for the Myeloma Community, and I went to a family meeting in Vienna, and I met some people, including my doctor there, and I said, "This is what I want to do. Do you think I can do it?" And Dr. Hines Ludwig said, "If you think you can do it, you can do it." So, I hopped on the bicycle, with an old high school friend in 2010. The first trip that we did was from Newport Beach up to Bullhead City, Arizona. And I did it as a fundraiser for IMF, and I did it for myself to see if I could, and Tom was along to support me. My buddy Tom Monay, in case I had an issue or a problem. But we didn't have any problem, and we did it in five days, 300 plus miles over to Bowhead City.

And then we got a lift back from his brother. So, it was a one-way trip. And the next year I said, "Okay, I'm going to redo the 1968 trip, and meet people along the way," which I did. I met the people in support group meetings, because it was 2011, 2012, right up until COVID. And now all the meetings are virtual, or at least most of them are virtual. So, I haven't met too many people. And so, this gives into the opportunity for people to meet me, and to know not to give up. This idea of this podcast is a good thing.

IMF Communications:
And I understand you make a lot of adaptations to do these rides. You mentioned in your blog you wear crocs, 'cause I think you've had some neuropathy in your legs.

Andy Sninsky:
Still wearing them.

IMF Communications:
Excellent. What are some things that you do, have you done, to adapt with living with myeloma, and some of the side effects that you might have, or complications that you deal with and riding your bicycle? Besides wearing crocs, what are the things that you do to kind of get along on your ride?

Andy Sninsky:
Well, I take my multivitamin, magnesium, and vitamin D, medications, and vitamins that way. But I am not on any treatments at this time, and I haven't been since 2011. The last treatment that was given to me was Olmeda. I haven't had any bone pain issues, except again, I broke my pelvis in 2019. I fell off my bicycle on a training ride, and I couldn't ride for about six months. And then another myeloma patient said, "You got to get back on your bicycle to be you." And that was in 2019. And I went through that and got better.

And in 2020, I did not ride. In 2021, I rode from Kansas City to Albany, New York, on the two trails, the Katy Trail across Kansas and Missouri, and the Erie Canal Trail across New York, from Buffalo. Because I met a doctor at a conference in Heidelberg, Germany, and he invited me to come back. He now works at Roswell Park in Buffalo, New York. And he's the head of the myeloma unit up there. And his name is Dr. Jens Hillengass, and he's also my friend. My doctors have become my friends, just like Susie and Dr. Durie are my friends. And whenever I'm in Hollywood, I drop in and see them.

IMF Communications:
That's excellent. I know that you mentioned that you were in the monastery, and you were one of the miracles they were working toward. And Dr. Hines Ludwig treated you for myeloma when you were first diagnosed. I understand you did a trip where you went back to revisit that abbey.

Andy Sninsky:
Yeah.

IMF Communications:
What was that like, and what connection was it like to that monastery?

Andy Sninsky:
That was very interesting, because in 2018, the year before actually COVID began to be a problem, I told myself, "I want to go to that Heidelberg, meeting with Dr. Jens Hillengass." And I wanted to do it through Vienna to Prague, in the Czech Republic, because my ancestry is Czechoslovakian. And then over to Heidelberg that way and explore some new country.

Well, the monks heard, because I keep in touch with them, because they want to know that I'm okay, because I'm their pending miracle. So, they said, "Well if you're coming back to Vienna, you have to stop in." So, they posted me for four days, in the monastery, big chapter Cistercian monks. There's about 93 of them. They all know me, in terms of this pending miracle, but they wined and dined me, and entertained me, and took me into the little catacombs that the normal people don't get to go in, and all the stuff that you never think you would get to do, as a just the ye-hoo riding a bicycle.

But they like what I'm doing, and so they pray for me five times a day. That's their normal prayer regime. I think it's working. Like I said, I'm not Catholic. I'm Greek Catholic, Russian Orthodox. It's a Christian faith, for sure, but it's not Roman Catholic. And they said, "Hey, as long as we're working for you, you work for us and get better. Or stay better." Because I don't need to get better. If I can ride 50 miles a day, and get off the bike and feel okay, then I guess I'm doing good.

IMF Communications:
And also, other than this memory with the monks, there's so many stories you've already shared. What are, maybe if you can narrow down, it's probably really hard to determine having gone to Australia, Europe, US, Canada, two or three of your fondest memories of people you've met, or experiences that you've had while you've been cycling?

Andy Sninsky:
The 1968 trip. We landed on the 1968 trip, in New York City. We were trying to get on the Johnny Carson Show, Terry and me. And we thought it would be a good story. Well, we didn't know that at the time, because in 1968 you didn't have cell phones, you didn't have contact, you were on a bicycle all day. So, we didn't know the world was erupting in Czechoslovakia, with the Alexander Duchek, the premier of Czechoslovakia was being ousted by the Russians. And we passed by the UN building, at 4:30 in the afternoon. There were about five to 10,000 people in front of the UN, screaming, "Help the Czechs. Help the Czechs. Help the Czechs." And during a little low in the demonstration, I went, "Hey, I'm Czech. Help me. I just rode a bicycle from California. I'm looking for a place to stay, and something to eat."

And at that point, the New York Police Department officers came up and said, "Look, if you two don't leave here right now, we're going to arrest you for disturbing the peace, and constituting an illegal assembly." And we left that naturally, but we felt a little short sheeted by New York, as our arrival day. We were excited that we crossed the Staten Island Ferry from Staten Island. We went by the Statue of Liberty. There were no World Trade Center's then. It was the Empire State Building. And neither of us had been to New York, and here we were in the Big Apple, and we were going to be arrested on our arrival. That was pretty exciting. And we didn't get arrested, and life turned out all right.

Other people, just on the trips, Cindy down in Florida, one of the IMF group leaders. I spoke in Jacksonville, at the meeting, in I think 2012 or '13, when I rode from New Orleans to Jacksonville. That, in itself, was a great meeting and a great lady. And she hosted me at her house, and at the meeting, and she said, "You're terrific and we hope you keep going."

And then a year later, another special meeting. There was a gentleman, his name was Pat Killingsworth. He had myeloma. He wrote a couple of books on getting through transplants. And I met him at a couple of meetings, including our own in Orange County. And he said, "You're my hero." And I said, "Pat, I've read your books. You're my hero too." Well, they had a Pat Killingsworth memorial on one of the islands. I think it was Amelia Island, in 2015, and I said, "I'm going to go to that meeting," since I had been in Jacksonville. I flew into Jacksonville again, with the bicycle, and I rode up to Pittsburgh, where I was born. But I spent time with the big group of myeloma patients on that island, and we said goodbye to Pat the best way we could.

And a lot of us remember Pat fondly, because of his books, and his positive attitude, and that's what I'm trying to do, is keep the positive attitude, so that people who have now been diagnosed, and don't know what to do, can see that there can be a way to continue life normally. Although, riding a bicycle a thousand miles isn't normal, but it's normal for me, and it's something that they go, "I can't even walk right now. How can I ride a bicycle?" Well, you have to take those first baby steps. I used a walker, the walking sticks, finally began to walk further, get stronger, and eventually found something. It might not be a bicycle for the next person, but it might be a kayak, or something that they can do that gets them out and gives them joy. And the bicycle gives me joy.

IMF Communications:
That's wonderful. And how do your loved ones feel about your cycling?

Andy Sninsky:
They think I'm crazy, but they love me for it.

IMF Communications:
And is there any location that you haven't been to yet, that you're thinking, "Gosh, that's next on my list"?

Andy Sninsky:
I told myself, and when I travel, I have a business card, and it's an introduction card. On a bicycle, in other parts of the world, there are people with myeloma, and that's why it's the International Myeloma Foundation, around the world. And they're all panicking when they get the diagnosis. "What does that mean?"

Well, my card, they look at me and they go, "What's an old guy like you with myeloma doing out here?" But even the people who don't have myeloma know somebody with myeloma, or someone who passed with myeloma. Once they see the card, it opens up doors, avenues, a chance to talk to people. So, I hand the card out, and then I see what happens. And usually only good things happen, in terms of they say, "Let me take you to lunch. Let's talk about myeloma. My father has it. How can I help him to do better?" Or my wife, or my mother, or whatever. And it gives me a chance to tell them my story, but it also gives them a chance to relax a little bit, knowing that it's the diagnosis, and is not the end of the world. It's just another illness you have to cope with.

Now, to get back to the question, when my cards run out, I'm 73, I'll be 74 on this bike ride, I have enough cards to finish Canada, and one more trip. And that trip is going to be Australia and New Zealand. And I'm going to leave in January of this coming year, if everything goes well. I will ride the South Island first. I will meet my sister on the North Island, because she's a Bromeliad fanatic, which is a flowering plant that doesn't require fertilization, that gets it from the air, and she's going to a conference in Auckland.

So, then we'll goof around. We'll rent a car. I'll meet her in the North Island, after January, February, March, I'll explore the South Island. She comes over in March, has her conference. We'll have a rental car, because she doesn't bike much. And then we'll see the North Island for about a week, and then I will go to explore the North Island on the bicycle, after she leaves to go to Melbourne, Australia, where her daughter lives.

And then, I'm going to take that bicycle, this bicycle I've been riding on all those trips, and I will give it to my niece's sons. They're just coming of age where they might want to be explorers, and if they don't want to be, maybe their father will be, in terms of their life in Australia. And then I'll spend May and June visiting friends in Australia, that I made when I was on a trip to Australia several years ago.

And then, I will go to Europe one more time to say hello to Dr. Ludwig, and other friends I have in Europe. And then, with luck, see the monks one more time. I don't think they'll turn me away, and then I'll retire from this. I think 14, well it's going to be 13 years, will be sufficient. That doesn't mean I'm retiring from bicycling, just touring. That will be what I'm doing. The Australia trip, New Zealand, Australia, I plan to run out of the last of the business cards. I told myself I'm not making any more of them, my introduction cards, and I'll let the younger people take over for me, whoever the next person is.

IMF Communications:
And where can listeners learn more about your cycling adventures?

Andy Sninsky:
Well, I'm on the IMF website, with a fundraiser page. I have a fundraiser through IMF. I have a fundraiser page with Myeloma Canada, for those people who are needing some sort of support. The best way to do it is to look at the different agencies, and the International Myeloma Foundation has been very good to me. So, I would hope that, between those, and I have my Crazy Guy on a Bike site, which if you email me at Volc, V-O-L-C A-N-D-Y, at hotmail.com, I will put you on my mailing list.

My Crazy Guy on the Bike, I just started when I left the border down in the beginning of Canada there, in a town called Ipperwash on Lake Huron, and it's going to run through, and I'm going to ride through September, which is Blood Cancer Awareness Month. And multiple myeloma is a blood cancer. So, I will have about five weeks to finish the thousand miles. I don't see that being a problem, 'cause I already did 300 in five days. I may have to slow down a little bit, or I'll be done by next week.

IMF Communications:
Thanks so much, Andy, for being our guest today. I know the IMS Member Fundraiser Team is incredibly grateful to you for all the efforts you put towards raising money for the International Myeloma Foundation.

As you mentioned, you have a fundraiser going right now for the IMF, and if you want to learn more about that as a listener, you can find Andy's fundraiser on the myeloma website, at Fundraising.Myeloma.org/bicycle-mojave.

If you have trouble finding that, we will it on this webpage, where you can find the podcast. Also, you can email Andy at [email protected], which is V-O-L-C A-N-D-Y at hotmail.com. If you want to get on his mailing list of his Crazy Guy on a Bike website.

If you didn't get any of this information, we will have a transcript along with this podcast, if you want to read through it. And thank you again, Andy, for joining us, and good luck with the rest of your ride.

Andy Sninsky:
I'm looking forward to dropping more photos into the IMF site, and the Myeloma Canada site, as I cruise along towards Manitoulin Island, and then points, whoever knows where I'll be next. But I'll stay in touch.

IMF Communications:
You've been listening to A Day in the Life Podcast, brought to you by the International Myeloma Foundation. To learn more about the IMF and Myeloma, visit us at Myeloma.org.