By Rosine Alleva, Journalist/Photographer – Rock At Night France, Switzerland
Benjamin Kushner is JOSH HOYER & SOUL COLOSSAL guitarist
He was diagnosed with leukemia stage 4 last year. I had the great chance to meet him again, when I saw the band in Belgium and interviewed Josh Hoyer. Benjamin told me about his amazing story before the show.
RAN– Hi Benjamin, how are you? I’m so happy to see you again. I didn’t know anything about what happened to you last year…
Benjamin– I don’t like to talk about personal difficulties if I can help it on social media. It doesn’t help anyone feel better. And I like to make people feel as good as I can help them feel, in my music, in my life. I didn’t talk about it much while I was really struggling with it. But once I could see that I was really gonna be ok then I was happy to share it at that point.
RAN– Did you know about it already when we met last year ?
BENJI– Yes, in September 2016, I was in the bathroom after a show and I felt a lump under my arm. So I thought it was strange, called a couple of friends who are doctors I grew up with. They said it was probably a swallowing gland but to watch it over the weekend and if it was growing to go and see my doctor.
And it grew quite a bit so I went to my doctor who said “it might just be a cyst but I want you to see a surgeon”, who I knew. He said it was too big and decided to take it out. So they took it out and it took more time that it should have, they needed some extra days…They called me end September, I’ll never forget that…the doctor said “Sorry it’s cancer, lymphoma, it’s kind of a rare mix of cells. That’s why it took longer cause we wanted to have it evaluated somewhere else as well”
So I had to see an oncologist, I was pretty scared. So they did tests at skin, put a spinal in the marrow….It was unbelievable. It was kind of funny though… The doctor was really good at it but it’s still very painful and uncomfortable. The nurse was so great, she was holding my hands and the doctor said “ there’s gonna be a lot of shaking going on right now”. So I was starting to think about Jerry Lee Lewis “Whole Lot Of Shakin’ Going On” and I was just telling the nurse all about that song and Jerry Lee Lewis through all the thing. That’s where I went.
RAN– Wow! This is just incredible Benjamin!
BENJI– When they found out it was 75% in my bone marrow, that’s called stage 4, they couldn’t believe I had no other symptoms. Well I had some night sweats but I didn’t think anything of it. It was really scary to find out it’s stage 4. I don’t know much about cancer but it’s all through you and they said there was no cure…They wanted me to start medication directly.
I wanted to have a second opinion. I have a cousin, she’s a brest cancer surgeon. My brother Michael told me “Let me call her…”, she’s was great. It’s really my brother Michael who followed me. Michael is really something else…So she contacted me and told me to come up to Stanford to get a second opinion. She works at the Lymphoma center. It’s absolutely top.
Once it’s found in your bone, it’s leukemia cause it’s in your blood. Doctor Levy, the Stanford oncologist, again, couldn’t believe I wasn’t more ill…so as I was pretty much asymptomatic, he suggested I should go home, it was not time to treat it yet. An approach that he developed is “watch for waiting”. He said “go live your life, try not to think too much about it.., at some point the scales are gonna tip, you’ll probably get sick”. That was where I was at when we met in March 2017 in France.
Between end 2016 and 2017, I didn’t really notice but I was getting more tired and weaker. I began to have more and more lumps. And during the summer 2017, after our tour, all of a sudden I began to be really sick. I was taking my daughter to a camp in Minnesota and I got a lung infection and I was getting worse and worse. I had high fevers all the time, couldn’t sleep or eat, with unending coughing. I just had decided to see a new doctor in Omaha, Doctor Julie Vose. She worked with the Stanford doctors previously and they highly recommended her.
She’s on a cutting edge of the research for novel therapies. They pull out part of your cells, change the DNA, which will be able to recognize your specific cancer, inject them back in your body, they propagate and it kills the cancer completely. But I wasn’t a candidate for that cause my cancer is more treatable than some… I didn’t need chemotherapy or radiation. So Doctor Vose said they would first kill that lung infection I had and then I would have to be treated with a daily pill, for the rest of my life, Ibrutinib, specific drug for that cancer. So I felt worried, sad, it was depressing to know you have to be on that pill for the rest of your life, every day…
But I felt a lot differently within a couple of weeks. All the lumps were just gone! It worked amazingly well! And then, for about 6 months they gave me transfusions of immunoglobulin to help my immune system ramp back up. Over the course of these treatments my blood level was back to normal. Now I only have to go in every 3 months, and every time it’s just perfect. And I feel pretty much like I always did! And I noticed I feel way better than I was a year before. I hadn’t noticed how weak I was becoming…
It feels so good to be able to go to the back of the bus and just start carrying all the gears with everybody else, cause for a while there, these guys were wonderful to me. They would only allow me to take my briefcase. Carmen, my darling, and my mum, my daughters Marina and Neva Kushner, they were all amazing to me. But, for a long time now, I can carry everything just like normal and that felt great.
I feel this has affected my music in only a positive way. I feel even more vigorously soulful cause I feel like I have a second chance. Cause, great musicians, for example Charles Bradley, Sharon Jones are a couple of soul musicians that I look up to so much, they’re just brilliant. And in the last few years they ended up with cancer and didn’t survive! So I feel very fortunate, very humble and it’s coming out in my music.
Also interesting, I always wanted to go back in time. I wanted to be 25 in 1968, I was fascinated by different times previous to now. But if I had that cancer in 1968 or anytime before 2006, I wouldn’t be here anymore.
RAN– I think quite a few people who recover from cancer, see life in a different way after this.
BENJI– I think a lot of different experiences can cause that, in my case it was this cancer. And the another thing that I feel is very important for people to know…
Cancer is scary but not as scary as you think it is. There are many treatments now, you don’t assume the worse, stay positive and the most important than anything, advocate for yourself. If you don’t feel comfortable with an opinion, a diagnosis, go and see another doctor, no one else can do that but you.
I spoke about the fact that this changed me but another thing that changed me was the outpouring of love everyone around me gave me. All the support, love from band mates, my sweetheart, my kids, my friends all around the world really…they all gave me a huge feeling of love.
RAN– Dear Benjamin, thank you sooo much for sharing this wonderful story of love for life and music.
From Belgian and Italian parents, I grew up with music, dance and big fun! I love singing since I'm a little girl, I still am, haha. When I was 14, I saw my first concert: T-Rex. Later it was FrankZappa, Miles Davis, Chick Corea, Fela, Canned Heat, Little Feat, Bonnie Raitt, Earth, Wind and Fire ....
I dreamed to have a chat with each of them 😀 Before interviewing bands, I used to sing (and still do) and met lots of great musicians. I had the chance to be the support band to Joe Cocker in 2007. I love to communicate and meet people (Italian blood).
Working for magazine, a few years ago, l met José Oliveira! We were working at the same festival in Colmar. 2 people from the South with the same passion just recognized each other...and we stayed in contact since then. Here I am! Enjoying concerts, covering interviews and articles with José for Rock at Night!!
Latest posts by Rosine Alleva (see all)
- BALOISE SESSION 2018 edition! Magical programme announced! - October 1, 2018
- BEHIND The SCENE with Rosine: BENJAMIN KUSHNER’s wonderful story of love for life & music - September 25, 2018
- I met JOSH HOYER & SOUL COLOSSAL at SPIRIT OF 66 in Belgium. - September 23, 2018