Giovanna Imbesi, a charismatic California-transplant, was living the dream. After years of climbing the shaky ladder of the West Coast music industry, she was finally finding regular work as a composer and touring concert pianist. It was the nineties and Imbesi was playing shows here and abroad with the likes of Yanni, John Tesh, Dave Koz, Andy Summers, the San Francisco Chamber Orchestra and others. For a classically trained musician, Imbesi had achieved the best of both worlds.
Everything changed when, after several visits to the ER over six years with unexplainable abdominal pain, each time being told it was stress or irritable bowels, she learned the real cause. After an abdominal scan, Imbesi was diagnosed with a rare form of cancer called a neuroendocrine tumor, or NET.
NETs typically develop in hormone-producing cells along the gastrointestinal tract; the stomach, pancreas, intestines, colon and rectum. Around 12,000 people are diagnosed with NETs each year, according to the Neuroendocrine Tumor Research Foundation, though that number is increasing by five percent annually. Still, little is known about NETs and misdiagnoses like Imbesi’s are not only common but happen in a majority of cases; proper diagnoses often exceed five years from the beginning of symptoms, according to the foundation. The cancer can also trigger carcinoid syndrome, a disease which affects everybody differently but typically causes frequent sudden bowel movements and extremely debilitating cramps.
Imbesi was shaken by the diagnosis–it was stage four. Treatment for a rare cancer like NETs is hardly straightforward but Imbesi treated it like she had her music career. She dove in and hoped for the best. This was someone who at 23, fresh out of the University of San Francisco with a degree in classical piano performance, started a jazz club. It was called Kimball’s. “Everybody in jazz played there,” she remembers. “If you know how difficult something is going to be, you just wouldn’t do it. But I was so naive that I just didn’t realize what it meant.” But her naivete paid off. Kimball’s became one of San Francisco’s premier jazz clubs.
In Los Angeles, Imbesi joined a support group for patients with neuroendocrine cancer. “My whole life changed at that point,” she says. With their help, she found a reliable surgeon and had two major surgeries. There were complications, however, and her recovery was prolonged and difficult. Music, for most of her life just a career, suddenly became spiritually vital. Lying in a hospital bed for weeks, unsure of her future, it was the only thing that brought respite. “There really wasn’t any substitute for it,” she says. She put her headphones on and found a brief peace. At home in 2006, recovering from surgery, Imbesi wrote and recorded her first album of original songs, Short Stories: Piano Music for Healing, Meditation and Relaxation. For Imbesi, music, the very concept of it, had changed forever.
Five years ago Imbesi founded a nonprofit called the Los Angeles Carcinoid Neuroendocrine Tumor Society, or Lacnets, an advocacy and community group. Music, and music therapy, is still a large part of her life, as is near-constant treatment. We spoke with Imbesi to hear more.
What is your background in music?
My family was not musical at all. But it was really my parents who insisted that I play piano. My grandfather was a musician on my father’s side, so maybe that’s the connection. But it really wasn’t my idea. Still, I really took to it. I think it was meant to just be something nice–a young lady playing piano–but it turned into playing clubs at two in the morning, which I don’t think was my parents’ original idea. It was a very traditional family. I think they thought it would be a nice thing to do, but not that it would turn into a career.
When was your diagnosis?
About 1999 I had severe abdominal cramps. Really, really severe. So I went to the emergency room. I thought it must have been food poisoning. The ER didn’t really think anything of it. They sent me home. The same thing happened about three months later, then it happened about six times. Each time they’d just give me some morphine, keep me for a few hours under observation then send me home, without followup, really. Even my primary doctor had sent me to a GI specialist. He just gave me some pain pills and said, ‘Take these next time it happens’. Now that I look back and I know so much more I realized that I was probably having an intestinal obstruction. That would have been realized if somebody had ordered a simple CT scan. But for whatever reason that never happened. Ultimately, about six years after that first episode, I went to a new GI doctor and he said, ‘Let’s just do a CT scan’. Sure enough, at that point they could see tumors in my liver and small intestine.
The first reaction if you see tumors in the liver is you think it’s stage four; it’s really bad; you might only have a few months to live. Only under further testing, doing a liver biopsy, did they discover that it was this rare cancer called neuroendocrine. It was not as bad as I first thought but still very serious. Neuroendocrine is mostly a slow-growing cancer. But it was stage four. The recommendation was and still is to have surgery first, get whatever you can out, then start to make a decision about treatment.
How did all of this affect your work as a gigging musician?
Here’s where being freelance really has a significant impact. I had really good health insurance but if you don’t work you don’t work; there’s no disability coming from your employer and all of that. I had to just wrap my head around, ‘Wow, I’m gonna have this major major surgery,’ and even that was just so overwhelming because I had to make a decision about a surgeon. I felt that, ‘I’m trained as a musician, I have no background to make this decision.’
When you have something rare there isn’t an established protocol. There wasn’t even 100% agreement about what surgery I should have.
I wound up meeting a support group. It was really amazing to me, about twenty other people who all had this strange new thing I had just learned about. They were so encouraging. My whole life changed at that point. They really helped because I had narrowed it down to two surgeons at that point. Just talking to the other patients who have had surgery with either of them really helped me finally make a decision. When you have something rare there isn’t an established protocol. There wasn’t even 100% agreement about what surgery I should have. The nuances of ‘Well should we do a liver resection, or this or that’ were so beyond my capability. At that point you just have to go with your gut and the recommendations of other people who have been through it. But I don’t think I fully grasped–I was 47 at the time–that this was really going to permanently change my life. I had never had surgery before, other then having wisdom teeth out. I just didn’t get the impact of having a major surgery.
That surgery was in 2005. The agreement was that if you have something obstructing your intestines that’s really primary, you want to get that out. Otherwise you risk having to have emergency surgery later. The surgery wound up taking out the tumors that were in my intestines. They used high heat to zap them. But I had some complications. I had a second surgery in 2006. I was pretty sick for about 10 months. I couldn’t really eat very much. It was scary.
The recovery was very hard on me. I’m pretty independent but all the sudden I couldn’t do anything. I was in the hospital for about two weeks the first time. Then I came home and I really couldn’t do anything. I was pretty sick. That surgery was in November then I had another in June, which meant that for those eight months I really wasn’t eating very much. I was in pain a lot. I just couldn’t really function. That was a pretty rough period. It wound up being almost two years of these surgeries, from the biopsy to recovering from the second surgery that I was really just out of everything, not working, just focusing on trying to recover.
And that’s where the music really came in. After the first surgery, November 2005, I just kept having one complication after another, not going home, not healing. It really felt like this could be it, that this is going to be the end, right here in this hospital. You start to see it on the faces of the doctors. My family was there. I could see that everybody was getting worried.
Just to lie there and have that much fear, and not know, and be in pain, music was the only thing that could take me to another place…
Just to lie there and have that much fear, and not know, and be in pain, music was the only thing that could take me to another place where I found any kind of peacefulness, and get away from that intense fear. I had my iPod at the time with me. I realized that some of the music was mine. I had been working as a musician for so many years and suddenly music just became an entirely new thing that was so healing. There really wasn’t any substitute for it. You could talk to the doctor but the other 23 hours of the day when your mind can go off in absolute terror, music was what really worked for me to bring me some peacefulness.
You were just listening through your iPod?
I was in the hospital, just bedridden. I had a lot of time. I was literally just in a hospital bed for sixteen days. It became something that I could do. And there was such a revelation for me about my purpose with music and what it meant to me, and what I wanted it to be going forward.
Professionally, you mean?
Yes. Since I had been freelance, I had about two years of being completely removed from everything. It’s not like you just jump back in again. It’s rebuilding your whole freelance career again. Simultaneously, the music business was pretty much declining. Those years were exactly the years when people stopped buying CDs, Napster had happened. Fast forward to where we are now. People buying digital music than not even buying digital music and just streaming things. The entire revenue model for musicians completely exploded. Even if I had been completely healthy at that point, it was an entirely different thing to get back into. A lot of the budgets had been slashed.
But what was really important was that what had changed for me was my entire relationship to music. I really felt like I wanted the music I did to be for a purpose. That it wasn’t about television advertising or commercial music. It was more about: how can music really be used for healing and music therapy.
I really felt like I wanted the music I did to be for a purpose… how can music really be used for healing and music therapy?
In 2006, as I was recovering from the second surgery, I had nothing on my calendar so I just sat down at the piano. That was perfect because I was physically unable to run or drive around. Just being in my studio at my house playing piano was perfect. It was part of my own recovery. Then I thought I should record this and make this into a CD. I’ve had a really nice recording studio for about 20 years and I had never recorded my own music, it was always on demand for other projects. This was the first time that I recorded my music.
How exactly would you define music therapy?
It means so many things now to people. But, with my music, people express similar emotions to what I had: they get to forget for a little while that they are going through whatever it is that they are. Initially I thought it would be directed towards cancer patients. Then I realized that it was anyone going through some kind of loss or grief or divorce, anything stressful. A lot of people have told me that it just helps them through their own illness. I have a friend who just passed away a couple of weeks ago. She wrote that it was the music she was listening to. She was in hospice and knew that she only had a few days left, maybe. It just meant so much to me, that that could be part of her peacefulness at that stage in her life. I think the therapy part is whatever it means to people. It could be meditation, just helping with stress, or literally for my friends, making a transition in her life, the final part of her life.
What is it about music that can tap into this therapeutic element of the mind? How is it different from other therapeutic practices?
One aspect of music is that it can be very emotional. I love being out in nature and that’s also something really therapeutic for me (being out in nature with music is even better!). They call it the universal language. It’s something that speaks to people. There’s scientific studies on how the body responds to the energy of certain frequencies. But I think with my music, there’s something about the environment, the intention that I had in it when I was creating and recording it that got somehow imbued in the music. I didn’t start out thinking I’m gonna record a CD for others. It was my own healing that got me to sit down at the piano. And then that turned into thinking maybe other people could enjoy it.
How does the essence of an experience get translated into non-lyrical music like yours?
I think it’s just taking the mood of what that experience is. Without lyrics it becomes accessible to everyone. I had the idea that I wanted these to be short stories. In that first CD the stories were really connected to the music but the music could live on its own as well. From my experience of going through the illness, I just felt like I wanted to write the words, as well as the music. For me that became an important part of it.
In the liner notes of your album, there are many mentions of travel. Did you travel much while in recovery?
I love to travel. It’s one of the things that has been impacted by this. I did go on a trip with a zen monk to Italy which was a meditation and yoga retreat. The experience of being in so many sacred spaces got translated into my inspiration for some of the pieces. That has happened more and more, since I’m not thinking so much commercially now, thinking how the music can really translate that experience.
I just spent about a week at a very amazing retreat in northern California called Commonweal. People nickname it “cancer camp”, which doesn’t really do it justice. It’s been around for 30 years. Six times a year they have small groups with eight people who come together for a week. It’s really amazing. My group happened to be all women, with different types of cancer, some people definitely more advanced, fairly sick. The bonding that we had that week–every time I would go to a piano and think of those women–we called ourselves the “soul sisters”–I was just so emotional. That connected to the music.
Around the same time I had an opportunity to score a new documentary film on the Women’s Marches. I was at the Women’s March in San Francisco, January 21st. Then I had this opportunity to score the film. This is exactly what I want to be doing with my music, where it’s aligned with what I believe in. I feel like it’s working for a cause. I feel like it’s a new direction. I needed more of a connection and meaning, a sense of purpose with how I was using the music. It wasn’t so much of just getting paid.
Medically speaking, where are you now?
So far there’s not a cure. It’s what they told me in the beginning, that it can be a manageable cancer. I’ve been going to Germany for a treatment that’s not quite available in the US. Something called PRRT, which has been used in Europe for about twenty years now. It’s just now pending FDA approval in the US. I was on a clinical trial starting in 2009. I was stable for about seven years then started having some progression. I had to make a decision about what to do, research the options.
When I was diagnosed I knew I had tumors in my liver. There really isn’t a way to get all of those out. Steve Jobs had the same cancer. He had a liver transplant. But if you have disease outside of your liver you’re not eligible for a liver transplant, and what we’re finding is for many neuroendocrine patients, they do have other disease. In my case, I have bone metastases. When that’s the case you’re looking for something more systemic. PRRT has shown really great results–again, not a cure–but it tends to stabilize people for some period of time.
Steve Jobs had the same cancer.
With neuroendocrine, it’s always you do one treatment, then move on to the next treatment. This last year has really been all about flying to Germany, coming home, flying out again. I’ve made three trips. It’s helping, definitely helping. But it’s, again, another big change of life to put everything on hold and make these trips to a little remote town in Germany. Everything is paid out of pocket, not covered by insurance. It’s very expensive. These are really life changing things when it starts being such a major part of your day and schedule.
Tell me about your organization.
About five years ago I started a nonprofit called Lacnets. Basically it is support for neuroendocrine patients in Los Angeles. It has really grown. We have monthly educational meetings with neuroendocrine experts. We’re pretty plugged in. I go to a lot of conferences around the world. And we actually do our own annual conference, on June 24th. My idea for the nonprofit, sort of like the jazz club, was was not that I’d create this big nonprofit. We started with one meeting. But, now five years later we a have an annual conference, a video archive of amazing doctors, etc.
We also produce concerts called Music Heals. Something I just got a small grant for. I’ve done a few of them. It started as just for patients. It came out of my own realization of how therapeutic music can be. I teamed up with the Cancer Support Community, a nationwide group, but there’s a local chapter here. They let their participants know about it. We did three or four of them. They were so well received. It was mostly patients, but then people who just wanted to support the efforts or the artist came. All different kinds of music. One performer was a friend of mine from Seattle, a singer-songwriter and also a cancer survivor. He’s a blues player and storyteller. He was so uplifted to look around the room and see people dancing, clapping, just enjoying themselves. Just a different energy in that kind of space, with so many patients. I’ve been so busy with the other part of Lacnets but my goal for the next year is to get these concerts happening again.
What made you start Lacnets?
I mentioned that when I first got diagnosed I went to a support group. The woman who led that group passed away, in 2010, and then there wasn’t any support group; it just ended with her passing. It just seemed so odd that a large city like Los Angeles, with at least a thousand patients, didn’t have any place to go. I knew how important it was when I first got diagnosed: it changed everything. I decided to go back to school and get my MBA. I was just graduating in 2012 and that was when I started it. Thousands of patients have benefited, either just being able to talk to another patient, or even just walking into a room full of people who all have this rare thing that you just found out about. It’s just this hugely life affirming thing. Then you find out that ‘Oh, some of them were diagnosed twenty years ago’. That gives you so much hope when you start out thinking that you just have no idea how long you have.
What makes NETs different from other cancers?
Well, every patient is different. When the doctors are trying to evaluate a patient, with other cancers there’s more of a protocol. They say, ‘You have this type of breast or colon cancer’. With neuroendocrine it seems like everyone is different in terms of treatment.
Fortunately in the last couple of years there have been new treatments and drugs that are helping. There’s a lot of options for treatment but the sequencing is really tricky trying to figure out what to do when. It really depends on each patient. If they also have diabetes then there’s a different complication, for instance. And 80% of the patients are misdiagnosed so pretty much everybody is stage four by the time they are diagnosed. That means you have tumors in the liver, so it’s definitely more complicated at that point.
I definitely have a sense of how fragile life is. It’s changed how I approach life, where and how I spend my time.
I’ve been living with this for twelve years. That’s a really long time to be in this head space that ‘Wow I have cancer’, thinking about how to approach life when you know that that’s there. I’ve seen it happen when sometimes it just takes a turn. Leading Lacnets, so many people have passed away, friends, close friends. I definitely have a sense of how fragile life is. It’s changed how I approach life, where and how I spend my time.
Tying that back to music, it’s become even more important to me in a way where I find my expression and, hopefully, ideally, where I can also help other people with it. But there’s a different sense of just taking life for granted, ‘Oh yeah, next year I’ll do that’. I have a saying, ‘Age is a privilege’. In our country we’re all concerned with getting older. I’m turning 60 in November. So many people are thinking, ‘Oh my god, 60. I’m getting old.’ I’m thinking, ‘Wow, I’m gonna make 60.’ I was diagnosed at 47. That was not a given for me. It’s a different way of just appreciating time, and how to spend that time.