She Whom We Call Rose, By Any Other Name, Would Still Kick Cancer’s Ass.

This is the second article in a new series of personal stories about how yoga has helped, transformed or benefited the experience of different people who have been through adversity or otherwise tough times.

by Anne Clendening

Things never to say to a cancer person:

Oh my gaaaaawd, you’re so skinny, I’m so jealous you got cancer!

My dad/mother-in-law/best friend had cancer. They died.

Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK? Are you feeling OK?

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You would never know it by looking at her, but Rose was once very ill with a very rare cancer on her pancreas. It would be impossible to exaggerate here to extent of her experience with hospitals, doctors, blood work, organ talk, shots, general scariness and periods of just feeling disgusting. I could start with her nine surgeries she had in four years, or the “Whipple,” one of the most invasive procedures a human being can have…  Not even the Six Million Dollar Man was under the knife as long for his cyborg reconstruction to become the Bionic Man. But she’s super healthy now, she’s still got the sweet soul of a 17 year old hippie chick and she’s my friend.

I once filled out the Proust Questionnaire in the back of Vanity Fair. It asks, “What is it you most dislike?” My answer: hospitals. I’m not sure anyone is too fond of them, so read on knowing there’s a happy ending.

You look beautiful. And tan, and very healthy.

Thanks, I am pretty healthy!

Where are you from?

Chicago, the North Shore suburbs. lose to Lake Michigan and Northwestern University. It was a really nice place to grow up. Midwesterners are the nicest people.

Do you consider yourself a midwesterner?

No, no, I consider myself a Californian. I moved out here when I was 19. I was kind of a wild child, and I was trying to change my life up and get away. My parents had already moved here. I lived in Topanga Canyon in this great little house, and I had a German Shepherd, and I just thought I had died and gone to heaven because I was in the mountains and I had this huge peach tree… But to get to my kitchen you had to walk outside on this little patio, and there was no running water in my kitchen, and the shelves were carved out of the side of mountain which, at the time, I thought was the coolest thing ever. It had this floor in the bathroom where if it rained, worms would come up. It was very funky!

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What were you doing when you lived there?

I was working in a restaurant. I cooked a little, and I was a waitress as well. I had come out here to be less crazy, but I became more crazy, more wild, partying a lot. I met this man who I was crazy for—my son’s father. I was living with him and when I got pregnant, I already knew I wasn’t going to stay with him. Things were a little wild and crazy, our lifestyle. I knew I had to figure out a way to support this baby I was going to have, and I knew someone who was a hairdresser. I was a total hippie; I had never even owned a tube of lipstick. My hair was so long I could tuck it in my pants. I decided to be a hairdresser, which took nine months. I never liked it, even though I had the personality for it, but it was a great job for a single mother. I was totally able to support us.

Had you been doing yoga yet?

No, but I was very into fitness. I used to be a very curvy girl. I exercised all the time. I’m the only girl in my family, I have two older brothers and they always told me I was fat. I only seriously started doing yoga when Black Dog opened, a little over eleven years ago.

Do you think it’s ironic you were so fitness oriented and you ended up with cancer?

I don’t think that has anything to do with it. I think when you have cancer, or a disease of any kind, you really think about what and where it came from. I very strongly believe that for me, there was a big environmental component. Where I grew up in Chicago the house that I was conceived in and born in was my parents’ first house they had built, in a neighborhood where no one had built before. There’s a cancer cluster and an MS cluster there. Apparently, the land had been a potato farm they had used [the very toxic chemical] dioxin on. I feel like that had a lot to do with it, because the kind of cancer I had isn’t familial. They don’t know a lot about it; it was a very rare kind of cancer. It a kind of cancer called a “neuroendicrine carcinoid,” and it was on my pancreas and in my lymph nodes.

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How did you first find out?

I was having a lot of really weird health issues. My hair started falling out, I was having night sweats, I had a lot of stomach stuff… When this all first started there was a quintessential moment that I got sick, and I felt really lousy and I felt a lump in my neck. I went to the doctor, and you know I was young, in my 30’s, and healthy basically, and he just thought I had a virus. He told me to come back in two weeks, and in that two weeks I had lost, like, eight pounds. I was really sick. And when he examined me, he said my lymph nodes were everywhere, all over my body. He sent me to a hematologist, and they suspected I had a kind of lymphoma. I had a big, swollen lymph gland in my armpit the size of a ping pong ball.

It’s a long, sort of cuckoo story, but to make a long story short I was being seen but they weren’t diagnosing anything. And I was feeling kind of crappy, but not getting worse. After about six months I had just kind of had it with going in this office; it was really stressful, they were taking my blood work all the time, and I just decided it wasn’t the way to go. They had sent me to infectious disease specialists, all these different doctors… I must have had three or four HIV tests. Eventually I started to feel better to the point where I had some symptoms I could deal with, but the main thing was I had ongoing night sweats that would kind of come and go, and I had a lot of fatigue issues and a huge pain in my side.

By the time it was finally diagnosed, they feel like I had had it about eight years. It was a slow-moving kind of cancer, and they found it in a significant amount of lymph nodes as well. Pancreatic pain, it felt like… I kept going to the gynocologist and she kept examining me, but the pain was really in a different neighborhood. So she never suggested I see someone about my digestion because truthfully, I was didn’t learn how to be a patient until after I was diagnosed with cancer, and I didn’t really list all my symptoms all the time. So after four years I went back to the gynocologist with that pain in my side and she said nothing was wrong with me, I knew something was wrong with, I knew I wasn’t crazy.

My husband and I sat down and made a list and it turned out, I had a lot of symptoms I didn’t really want to talk about, a lot of bathroom related issues. It was quite a list. And people don’t understand, especially when you have cancer in your digestive system, all anyone wants to talk about is your poop. Quite honestly, that was something I really didn’t want to talk about, but it’s the kind of answer to a lot of things. I went back to the doctor, who took a bunch of blood and I scheduled an abdominal ultrasound. The next morning my phone rang, and it was him. He said “I’m looking at your blood work, and quite frankly I’m frightened for you.” There was something seriously wrong.

What exactly does your pancreas do?

Your pancreas provides insulin, and helps you metabolize sugar and fat. If your pancreas quits working, you become diabetic. It’s a very complicated organ; there’s not a lot a pancreatic specialists, and it’s very hard to image and diagnose and do all that.

So I went in for more blood work and to get that ultrasound. They saw a growth, and a lot of my digestive system had been destroyed by what was there. At first the radiologist didn’t suspect I had cancer, he suspected it a kind of rare cyst that you’re born with and grows as you get older.

You never thought it might be cancer?

Never, ever. I was a very healthful person. What they did know is that I was going to have to have a big surgery. My gall bladder had been destroyed, my bile ducts were destroyed, so no matter what I would have ended up in the hospital very shortly. I think by nature my body wanted to be healthy, and it was fighting it like crazy.

Do you know anything about any other people in the cancer cluster you spoke of?

I do, I know of a lot of people I grew up with, some with M.S. and some with all different kinds of cancer, some very rare. A girl had brain cancer, a fair amount of breast cancer, and a lot of unusual cancers. The kind of cancer I had was the same kind Steve Jobs had. It’s very unusual. They always say you don’t want to get a rare disease, which is kind of true because they don’t know what to do.

So my doctor had me do a special MRI to image my pancreas, and at the time Cedar’s was the only place. Then I had to have a CAT scan. At this point I had been so short of breath, I could barely walk up a flight of stairs. It was all in my lymph nodes; I was really sick at this point, and it had been like that for probably six months. I went home, tried to walk my dogs but I couldn’t really walk the trail, and I was supposed to be having lunch with my son who had just gotten a scholarship to NYU the week before, and I remember so vividly when the phone rang… It was my doctor, and he said “Rose, I have a diagnosis for you.” I was leaning on my kitchen counter, my son was walking in the back door, it was a sunny day in the beginning of February… “You have a golf ball-sized tumor on your pancreas. You need to be in the hospital immediately.”

Hey kids! Learn some new words today!

Hepatobiliary specialist: an expert in treating the complete spectrum of liver, pancreas, gallbladder and bile duct disorders.

Jejunostomy: The surgical formation of an opening from the jejunum to the surface of the body, through which food may be introduced.

Whipple surgery: (also called a Pancreaticoduodenectomy) one of the biggest surgeries done on a human. A procedure where surgeons remove the head of the pancreas, most of the duodenum (a part of the small intestine), a portion of the bile duct, the gallbladder, and associated lymph nodes. In some cases, the entire duodenum and a portion of the stomach must be removed. The surgery takes on average six hours to complete.

I can tell you that when you have cancer, your vocabulary grows in a huge way, with a bunch of words you wish you never heard of.

They told me that, depending on what they saw once they got in there, then they would know what they had to remove. I told them I needed a week to get my life in order. And they gave it to me. I had to be ready to check out for at least two weeks while I was in the hospital. And who knew what was going to happen.

It was a nine or ten hour surgery, where they removed half my stomach, half my pancreas, my gall bladder, they rebuilt my bile duct, they took out like, 25 lymph nodes that were infected, all my sphincter valves, a bunch of my intestines are gone and my duodenom, where your nutrition is taken out. So I don’t break don’t food the same as other people, and especially not at first. For this kind of surgery they give you an epidural that they leave in for almost two weeks, and a morphine pump, and an NG tube, so I had a bag next to me, among a bunch of bags, with green bile that was coming out of my stomach. You can only have eight ounces of water a day, which they measure. The entire digestive system gets taken apart and now it’s asleep, and it’s being kept asleep because they need the scars to heal and seal, because the juices in your digestive system are so toxic.

So the goal to get the tube out is to fart. You can only imagine, right?! That’s how they know things are starting to work properly. So after like 10 days, everyone in the world knows that I haven’t farted, my nieces and nephews are making me videos, people are calling and asking, “has she farted?!” It was like the world news! Very humiliating, and then you fart and you can’t believe it, it’s the most exciting thing that ever happened in your life because you know you’re going to get that freakin’ tube out of your nose!

Sounds brutal! How long until you started feeling better?

It was home almost a year. It was tough. I had drains I went home with coming out of my pancreas. Nurses came three times a day to the house; my incision got infected. I had to relearn to eat. I couldn’t wait to get back to my life. I couldn’t have any sugar, alcohol or fat. All the good stuff. It was really hard on me to eat. Sometimes now I can do one or the other, but not everything together.

Like a cookie and a cocktail?

No, and that doesn’t even go together! What happened was, I got better. But there was a new “normal” for sure. I had a lot of issues; there were a lot of things that changed. But the best thing that happened is I went to culinary school, which is what I always wanted to do anyway. I always was a crazy cook; I cooked forever, from when I was a teeny little girl. It was what I loved to do. I ended up with a job offer from Spago.

[Spago] didn’t know anything about me; I kept my secret hidden. And it was killing me working there. It was really hard on me, because my physical stamina was way different than it used to be. I wanted it all behind me. It took me many, many years to talk about my cancer. I wouldn’t just casually talk about it. My doctor would call me to talk to people who would have huge surgeries, especially younger women, and I always would, anytime. But I wouldn’t necessarily bring it up in a dinner party conversation, because I didn’t feel like my cancer was who I was, and it was such a big huge deal, and such a heavy-duty kind of cancer… The surgery I had, the average life after is two to five years. I had a different kind of pancreatic cancer. It never goes away. You can get it for the rest of your life.

What happened with Steve Jobs?

Steve Jobs was diagnosed a little differently than me, before he ever had surgery, and they wanted to give him the Whipple. He said he wanted to treat it himself for nine months. He went on a bunch of juices and diets and things like that, and that was his fatal error. It killed him. I was told by an oncologist you do need western medicine for this kind of thing, and I know there’s a lot of people who believe whatever they believe, but I just feel like I had a lot to live for, and I wasn’t going to fuck around.

Have you ever heard of any success stories of people who didn’t use western medicine?

Never. Not with something on your pancreas. And I started having other problems with what was left of my pancreas, and I ended up having a surgery that was even bigger than the Whipple, called a Pancreatic Jejunostomy.
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Were you getting depressed?

You know, I’m so lucky that I’m not by nature depressed, but I was struggling with life. Life was just harder than it should’ve been, because I didn’t feel good all the time, and not being able to do stuff was a really hard thing for me. And I knew I should be doing yoga; I just felt it in my heart and soul. After the Whipple, I had taken a Bikram class. It was way too soon, I was way too vulnerable, and everyone was taking off their clothes and it was hot and disgusting and I actually tore a muscle in my chest.

So I went to another studio a couple of times, and it just never resonated with me. I knew I needed it, but I couldn’t find the right thing for me. And quite honestly, I didn’t have the energy to search all over town. Then I met Shirley O’Connor (original co-owner of Black Dog), and one day we were sitting around talking about our lives, and she said she was gong to open a yoga studio. I came the day they opened, and I met Sigrid, and Jenny, and Heidi, and the class I took that day just clicked, and I got it. I had so many health issues that when I came to yoga, it would be an hour and a half of reprieve, not being sick, not throwing up. There was just something about it, and I knew it was the right thing for me.

I started working at the desk, and I started doing yoga and it just kind of evolved into my life and a practice. I did it every single day.

How would you say it helped you where you were in your life at the time?

When I started doing yoga, I wasn’t looking for a spiritual practice. I felt like inside of me, I was pretty clear on the way I was and what was happening. Again, I’m really lucky, because by nature I’m happy. It’s the biggest gift anyone could have. What happened was I started doing yoga and it really became more of my lifestyle, and the message that if you do it enough it all kind of sinks into you, I never necessarily believed it but it’s true, for me… I had the nine surgeries, I had the Jejunostomy, I started doing yoga and I have never spent a day in the hospital since.

The only thing that’s changed, besides everything, is yoga has become my job, and at first I didn’t work as much and I was able to take much better care of myself. I’m not one to really rest a lot, and I’m a person who doesn’t want to miss anything, and I want to do everything. My doctors told me most people who had my big surgery end up on disability their whole lives. I’ve figured out a way to deal with everything, but nothing has helped me as much as yoga. I think yoga is responsible for me having the health and the strength I do. I know people think I’m lucky because I have a great life, but they have no idea… One of the biggest gifts the studio has given me, and there’s so many I can’t even begin to tell you, but one of the most amazing things is people would come up the stairs and tell me their story, because I’m here a lot, and there’s a lot of wounded stories that come in. And a lot of them were really bad. So I started telling people who didn’t feel like they could do anything, “look at me. This is what happened to me.” I’ve realized by sharing my story and helping so many people, it’s made me healthier. I never wanted to accept it because I didn’t want to be a “sick” person; I didn’t want to say that I had all these problems. I believe by telling my story, and meditating on my story, and thinking about my health, it made me more conscious of it and by sharing it, it made me accept it. I could never accept it. It’s still really shocking. I just feel like my job is to talk to people just starting out or just coming back and tell them, you just never know. Doctors don’t know your nature. They can tell you that you’re going to be on disability forever and you can be like “fuck you! I have a lot of fun to have! I have things to do!

This is who I am. It’s totally defined me. I never wanted to be the poster girl for cancer. I never wanted a survivor tattoo. I do, sometimes, rock a bikini, even with my scar. I don’t care! Like I said, I think my body wants to be healthy. And I just feel like every day I can do yoga is a big fuck you to cancer!

And now, some words from people who adore Rose a whole hell of a lot.

Peter Barnett [Owner of Black Dog]: Rose is one of the most energetic “can do” people I know. She has a great way with people, but yet is tough. She is the one who keeps BDY running smoothly. Rose is my dear and close friend whose sage advice on (almost) any subject I cherish.

Sigrid Matthews [Teacher]: Who has better hair than Rose? She’s a groovy girl who looks hot in far-out yoga pants. She’s the older sister (not as in “old”) I never had. It’s so cool how inspirational Rose has been to all of us.  Not only does she help me believe that yoga really does work, but she’s gotten all of us cooking our butts off! And, she’s the real deal. She is always there to help, pitch in, listen to my woes, work with the community and laugh. Dale (her alternate persona) loves Black Dog and she loves the teachers. Did you know she even took the teacher training because she was so inspired by the work we do? I hate this expression, but it’s apt here:  “Rose Rocks!”

Jenny Brill [Teacher]: Black dog yoga simply would not be the same without Rose—she is the dorm mother, doing everything from dealing with loony customers, to bringing popsicles for my workshops, to calling me when she knows I’m going through a hard time, and everything in between. I remember when she was sick and had just started yoga, you could really tell she was uncomfortable being touched and adjusted in class—so different from how she is now. I love you Rose!!

Shirley O’Connor [Original Co-Owner of Black Dog]: We were meant to be. We only had one degree of separation on three fronts. We just asked her consultation as a valley milf type to help us to make sure we were targeting the right demos, because back then nobody knew what yoga was. It turned out that she needed us as much as we needed her. And together we created exactly what we intended. We healed each other through cancer, post baby… everything came our way, and we overcame with love and grace. Rose is my sister, my friend, my protege, and she continues on living the Black Dog dream with Peter exactly how we envisioned!!! She is Warrior 1,2,&3 always, with a bit of Happy Baby in the end!!! I love her and my life would have not been the same without her.

Steve O’Connor [Original Co-Owner of Black Dog]: When I hear the word Warrior in class, I usually think Rose. She is a Warrior Princess. She represents to me the combination of fighting and healing. In my experience, there has been nothing that has represented Yoga more.

So yoga gave you self-confidence?

I already had a lot self-confidence. It let me accept my cancer, and by accepting my cancer I think that it made me healthier, and it let me accept the fact that I need shots, I need to go to the doctor… I’m still a terrible patient though. It drives my husband crazy. And I’m not one of those people that say cancer was this incredible gift that made my life better. I would say you can have it back!

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So what’s the number one thing it’s taught you?

I think the number one thing is to be really honest about what’s happening in your body, because that’s what got me into trouble. I didn’t want to talk about all the things that were happening, because they were really unattractive. I always tell people, you have to talk about stuff, you have to learn how to be a patient. And it sucks! Because I still am who I am, and I’m still learning.

What’s your favorite yoga pose?

I love Triangle! It feels great in my body. I hate Urdhva Dhanurasana. When I first came to yoga, I couldn’t do it if my life depended on it! My abdomen has just been ripped apart and put back together. But you never stop learning in yoga because one of my biggest lessens is I’m very competitive with myself; I had to learn to pull back. I could never, ever do the easy thing. I came into yoga sick, or recovering, but became a very strong student. I’m trying to tone practice down, because it’s not working for me to push it too hard anymore. I’m trying to practice in a different way.

Whose classes do you go to?

I of course think Sigrid is brilliant. She’s taught me this whole time. A lot of times I take what’s convenient, and I try to change it up—I take Natalie, Chappell, Peter—and I’m trying to soften it up. And that’s what yoga has allowed me to do, go easier, softer.

There’s so many things you don’t even think about… I’ve had to spend up to two hours in an MRI machine and in the past I’ve taken anti-anxiety medication for it and now, I can just breathe through it. Sometimes I fall asleep. It is just not a problem. I still have a problem in yoga with my breathing because of all the surgeries, and I feel physically blocked by scar tissue. It’s really hard for me to inhale.

Does ever a day go by where you don’t think about all of it?

I kind of can’t never think about it, because it affects my life every day. I don’t really talk about or dwell on my physical issues a lot. I would rather focus on the fact that you can turn something around that doesn’t seem like it can be turned around. I’ve had the most amazing 15 years. The quality of my life is so amazing. I couldn’t believe it when I turned 50; I never thought I would turn 50! I’m just so damn lucky; I’m the luckiest person in the world.

What’s your favorite Beatles’ song?

Love You To [Revolver].

Thank you, Rose. No wonder we all love you ♥ ♥ ♥

3 thoughts on “She Whom We Call Rose, By Any Other Name, Would Still Kick Cancer’s Ass.

  1. Pingback: I Choose Happiness. by Rose Gresch

  2. Pingback: Meet Rose's Mother, The Oh-So-Lovely Yoga Lover & Believer Beverly Rosen.

  3. Pingback: Interview: PTSD, Pit Bulls & Yoga With Donald McClintock.

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