Leiomyosarcoma Direct Research Foundation

Advice for New Doctors

Robin Kohler (Chaya Rivka)
October 24, 2007
This speech was delivered at Hadassah Medical School in Jerusalem, Israel
to first-year students on their first day of medical school.

Shalom, Shalom. Welcome to your first day in medical school. I am sure this day will be etched into your memories and carry you into the future. I hope what I have to say in the next 15 minutes will be important to you and your practice of medicine.

My name is Robin Kohler. I am also known as Chaya Rivka. I was born in rural New Jersey in 1955 to the coolest parents a kid could ever want. My Mom was a doctor. An endocrinologist. She went to medical school in 1936 when in the US Jewish enrollment was limited to 2%. And to waste a seat on a woman was almost unheard of. She was smarter and brighter than all her male counterparts to get in and stay in medical school. My father was a chemical engineer and an entrepreneur. When I was in 7th grade, my dad took a two-year cruise with his friend John, a chiropractor, and his two sons around the world in a ferro-cement sail boat that they built. That's right, a cement boat. I don't know too much about the boat but it was the first one built and successfully used. Over the course of those two years my mother, sister and I would fly to various parts around the world to meet my father and sometimes sail the next "leg" of the journey. I experienced high waves and storms at sea, and calm clear oceans and other people and cultures.

I went to college and studied physics and after graduation did a tour of duty with the US Navy in the Nuclear Propulsion program. I eventually married and had children. My family and I traveled with my husband all over the central US and Canada and even Queensland Australia as my husband was a shochet (ritual slaughterer). In the energy crunch of the 70's it was cheaper to send the men to the beef. When we lived in Nebraska, one year we actually had 20 feet of snowfall! These were geographically interesting places but intellectually a bit boring for me. So I started taking college classes to exercise those grey cells, and did another degree in accounting. Those years I worked as a stockbroker. When we finally moved back to civilation in 1983, I started working for Pete Marwick, one of the big 8 accounting firms, first as a staff slave and then over a course of a 14-year career to management.

When my husband and I first met we both wanted to settle in Israel. Our parents didn't agree to this so we patiently waited it out for them to pass away so we could go without hurting them. The only problem was it took 20 years for that to happen and I was now 42 and my husband 52. We had our whole adult life in the US at that point with established careers and a house and two cars and kids in school. We were members of a community and had many social connections. It would be very hard to leave then, we were so dug in. 20 years earlier, we would have been newlyweds with nothing to hold us anywhere. But we gave up our six figure income, sold our cars and house, pulled the kids from their schools and came to Beitar Illit to our apartment we bought on paper sight unseen. I remember driving in and seeing the ten-foot fence surrounding the community with rolled razor barbwire strung across the top. I said to my husband "what are we getting ourselves into?" We were very naïve about this whole Aliyah thing. Aliyah was not simple. We didn't speak the language, and the culture was alien and people not too friendly. The experience was totally different from our other worldly travels. The kids bounced from school to school and went without friends and social connections. But when everything was said and done our only regret was that we did not come twenty years earlier. Here we are 10 years already. All my children are still here too, and my grandchildren. It has not been easy but definatly worth the effort. My husband decided to retire early and pursue his life's long interest in learning. I wasn't ready to retire yet, so I worked one meaningless job and stepped up to another meaningless job and so on, until I finally passed all the required parts of the Israeli CPA exam, and was ready in 2001 to open my own accounting firm. My entrepreneurial dream was about to become true. I found my niche, and my business grew – from just me to me and four part-time employees. I had an office in Jerusalem I shared with two other professionals. I was earning well into the six figures again this time shekels instead of dollars. My husband was happy, my children were happy and I was happy. I was truly living in "this is a wonderful life" world. Then in August 2005 all that changed.

I was going to have just a myometomy for a fibroid that was irritating me. But when I met with the surgeon a few days before the procedure he suggested to me I might as well have a hysterectomy, I was going on fifty and not planning on having any more children. A friend of mine had had one several years before and she never stopped telling me she was "the happiest woman in the world". So I readily agreed. I wanted to be "the happiest woman in the world" too. I turned out to be the luckiest. Because the doctor made an incision in my abdomen instead of just a small incision in my belly button, a second tumor wrapped around the ureter and descending from the cervix into the vagina was discovered. When I woke up from the surgery the surgeon told me he found a second tumor and there were "a few cancer cells". Dr. So and So would be in to see me and explain everything. Well, I was still a bit groggy and what could a few cells do anyway? Cancer is cured now and I'm young and healthy so I wasn't particularly upset or anything. My husband came to see me and asked if the doctor told me they found cancer. I said, Yeah it's only a few cells, its nothing and went back to sleep. The next morning Dr. So and So came to see me. He told me there was this tumor that was 6.5 cm by 4.5 cm that was in the bottom of my uterus and extended out through the cervix, wrapped around the right ureter, touched the bladder, and rectum and descended into the vagina. He had tried to scrap it out but it began bleeding and I lost too much blood so they had to stop. The initial pathology was a suspected sarcoma. He told me it would not make any difference in my prognosis that the tumor was not removed and I would need some additional treatment. He didn't explain why or what, I was stage 3c and I'd be seeing Dr. X, an oncologist after the pathology was completed in about two weeks and he left. I was pretty shocked with this news but I wasn't totally devastated yet as I was still back there with a few cancer cells. And since I didn't know what my prognosis was, or what a sarcoma was and we're in the 21 century and cancer is curable even though stage 3C sounded "bad", I was definitely concerned but not off the deep end. I knew one of the nurses on the floor and asked her if I could use her computer for a few minutes I wanted some menopause info off the net. Not knowing what I really wanted she let me. Into Google I typed "sarcoma" and my worst nightmare began.

Sarcomas are a rare neoplasm associated with aggressive disease and a poor outcome. 1% of all cancers are sarcomas and there are 70 different subgroups. In uterine sarcomas as a group, at stage 3 the 2-year survival is 40% and 0% for 5 years! Now I'm heading off the deep end fast and without a lifejacket. How the hell did this happen! There is no cancer in my family - everyone drops dead from heart disease. I've been on a strict macrobiotic diet for seven years. I go get a pap smear every six months to the chagrin of my gyno because I once had a bad pap 13 years ago that turned out to be nothing. I take tons of supplements and exercise daily. THERE HAS TO BE A MISTAKE. I read on and confirmed my thought. AH HAH! There is a 10% error in diagnosis so it is important that a knowledgeable pathologist read the slides. What I didn't know was the error was in the other direction – false negatives. Good I thought. I'll get a second set of slides and send then to NY and see what they have to say. I'll prove these idiots wrong. The lifejacket was thrown but it had a big hole. A few days later I left the hospital with my slides. They were FedEx'd to a large cancer hospital in NY for a second opinion on pathology. I was nervous, tense, anxious and full of tearful prayer that this was just a big mistake. I was in such shock that I could possibly have cancer and such a big one. If I had to get something why not a simple cancer like thyroid. I already have a slow thyroid. Damn, my lease is up in a month on my office. I'm supposed to sign a new five year lease this week. If I'm not going to sign my two office mates may not want such a big office with empty workstations and my office. And I'm suppose to kick in 20,000 shekels for remodeling – what am I going to do? The minutes dragged on, the hours dragged on, the days too. I hovered between being fine and talking to clients, to hysterical crying, hugging and kissing my family like I would never see them again to yelling at them to leave me alone. I was a mess! One day I heard shofar blowing and it was getting louder and louder. I jumped off the bed and ran outside expecting to see the street filled with people running to greet Messiah. I was yelling Messiah is here, Messiah is here - I'm saved! It was only someone in the shul across the street practicing for Rosh Hashanah. Finally, 8 days from when I sent the pathology the answer came back. Leiomyosarcoma.

The die was cast. There was no error, they were right. My "this is a wonderful life" world just hit a meteorite and exploded with no survivors. I was no longer Robin Kohler, wife, mother, grandmother, world traveler, physicist, accountant, entrepreneur, employer, business associate and what else I had been or ever will be. Now, I am Robin Kohler, cancer patient.

The next day was the appointment with the oncologist Dr.X. My husband came with me to the appointment. I had done some research on the internet already and was not happy with what I read. It seamed I was going to have to have chemotherapy and I was pretty dead set against it. I wasn't going to put such poisons in my body. The cure seemed worse than the disease. It was two weeks from surgery and I was feeling good. I still could not accept I had this alien thing in me. I had a long list of detailed questions just waiting to be asked.

We are waiting in the clinic waiting area. I see all these people there. Some are old but most are my age or younger. There are women completely bald and not embarrassed to walk around like that. Some look pretty sick and in wheel chairs or are using canes. But everyone has a similar knowing look as they glance my way. Soon I'll have that look too. And I kept thinking what did I do to deserve this?

Finally we were called in and a very pleasant young woman greeted us. From her manner I could tell she was sweet and nice and compassionate. We sat down and I started to ask my first question and she stopped me. Let me read the reports first and then we'll talk. She read the pathology report and underlined thing and took notes. Then she read the discharge papers and jotted a few things down. When she was done she gathered her thoughts and started talking about adjunct radiation therapy. I was not expecting this, so I brought up immediately that the tumor was still there. She said it was not mentioned in any of the reports. I suggested she speak to the surgeon which she did immediately. Her happy expression turned more serious as she kept answering yes into the phone. She then turned her back to me and spoke softly to the surgeon. When she was done she turned to me with a big smile on her face and said that radiation was not appropriate at this time and she could offer me "palliative" chemotherapy when I started having symptoms. Wait! This is not going according to my script. I thought I was going to have to decide if I wanted chemo first before I had another surgery to remove this tumor. What is she saying?? Widespread disease, inoperable, high grade with high mitotic index, vascular invasion, necrosis, hemorrhaging. She was saying words with medical terms I hadn't learned yet and my mind was shutting down with the shock. I heard her say six months to live, maybe a year on the outside. She was sitting there smiling to me as if I was about to win some special award and she just handed me my death sentence. Six months to a year! Even a judge who is sentencing the most hideous criminal doesn't smile as he says his sentence. I wanted to smack her across the face to stop that smile. We're not having tea here exchanging pleasantries. We are discussing my life, and I have six months to a year! Finally she finished and I looked at my list of questions and put it away and only asked academically, if anyone kills themselves after hearing this. She got flustered and called one of the psyches to talk to me. At least she got it right and let me be mad and rant a little and then I left. All I did was cry. And the more I cried the angrier I got. And the angrier I got the less I was willing to passively accept this. The first stop I made was to my gyno to find out how this could have happened. She was shocked to hear the news and she called her friend who was an oncologist to seek advice. Within an hour I had a name of a sarcoma specialist. Within a week I had an appointment.

Before going to the appointment with the sarcoma specialist, I spent every waking moment searching the web for any information I could find on Leiomyosarcoma. I came across a website called Leiomyosarcoma info and it was a G-d send to me. Everyone who wrote pages of the site are either patients or caregivers. The information given on this site was so encompassing, I felt I had enough information to ask the right questions this time. I also joined an on-line LMS support group who's members gives out all kinds of information on treatments and clinical trials but most of all the love and friendship is irreplaceable. We are comrade souls on the same journey.

I went to the appointment with a friend as I was too nervous to travel alone and take notes. Prof. Z was a personable doctor. He read all the reports and looked at the CT and MRI. He told me straight. I had a disease that will kill me. It was caught late, but with very aggressive treatment, and it was a long shot, I still had a chance to be cured. The treatments were very difficult and the debulking surgery would be disfiguring but if I were lucky I'd end up with my life. I said, "let's go for it". He wrote up the protocol. The only catch, his hospital was too far away for this type of treatment, so I either had to move closer or find a hospital in Jerusalem that would be willing to administer the treatments. Moving was out of the question, so the search was on. The first hospital I went to said it was humiliating to bring a protocol from another hospital. If I wanted to be treated there, they would decide what to do. They would not do this protocol as it was too toxic. What they suggested was a second line chemo. Thanks, but no thanks. The next hospital thought about it and finally agreed with a signed release of any responability that neither I, nor my estate would sue them. Fine, a date was set. Two days after Yom Kippur.

The day arrived for my first chemo. My husband drove me to the hospital and got me settled in and left. Various doctors came and examined me. My port was opened and tested and I was ready to go. I was getting AIM named after the three drugs involved and it was a three day + continuous drip. With check in and check out it's a four-day affair, every 21 days. During the other 17 days there is a lot to do also. On day 8 start the Neutrogena shots to support bone marrow. For a week you give yourself a shot in the thigh. The first time I had to do it my hand was shaking and I could not push in the plunger on the syringe. You have to take your temperature twice a day and record it on a chart. If it goes above 38 you have to go to the hospital to be checked for a neuprogenic fever which could be life threatening. Plus you have to keep track of all your medicines – beside what you may have taken before, now there are antinauseas, maybe pain medication, and of course the anticonsipation medicines which you have to take, and the propalatic antibiotics unless you really get sick, then you have IV antibiotics. Prior to cancer I was a healthy person and not interested in medicine, so I found getting well to be a full time job. In my first 10 months of treatment I had 134 inpatient hospital days. The pain of being in hospital away from my family and business, my normal life, was very difficult. The hurt of realizing my old life was truly over and my new life revolves around 21-day cycles of hospital stays, temperatures and blood counts. I have lost control of my life. Some alien being, an enemy inside has taken over. I refer to this thing as the dragon.

After many ups and downs the three cycles of chemo were completed and a new CT and MRI were done. The long shot was paying off, the tumor shrank and I was "operable". I went to see the surgeon and he said he could do it but it would be disfiguring. He then explained. Any tissue or organ the tumor had touched had to be removed in what is known as a surgical plate and in sarcomas in has to be all in one piece with at least 1cm margins on all sides. To do this he would have to remove my bladder and colon and that would leave me with two bags. He also had to remove my vagina. This is pretty disfiguring! The big question - was it going to give me survival. He thought so. My main goal was to live so we went for it. Two weeks later in January 2006 I had the surgery. When I woke in the recovery room the doctor was there smiling. He said to me "G-d's hand was there, you have NO bags" and left. I went back to sleep smiling. Four weeks later I had another CT and was declared NED. Finally remission! Finally I was getting my life back! My sarcoma onc felt I still needed adjunct treatment because there weren't clear margins in the vagina. So I had three more cycles of chemo and then I moved on to Pelvic radiation and bracky therapy.

Before you have radiation, there is something called a simulation where they measure where the beams are going and mark you up for the technician to hit the spot. I was told to go over in the corner and undress from the waist down. I did and then noticed there was neither gown nor sheet to cover myself with. I called to the technician but she seamed to not understand me. They problem was I had to pass a door that was opened to the hall and as I walked past anyone walking past in the hall could see me in all my glory. So I put my skirt back on and walked to the table and took it off there. The tech was not happy about that as she had to bring my skirt back to the changing room. I lay on my stomach on a steel table. She asked me to spread my legs and then she stuck a rod up my tush. I was not expecting that! Why couldn't she say something to prepare me? Then she tried to put another up my vagina. Only it didn't really exist anymore so it really hurt. If she had said something I would have told her most was removed so it's only about 2" long now. She kept trying to get that rod in and I was seeing stars. A doctor came in and I explained about the vagina and they did something else. For the whole hour and half I was on that table getting measured and marked no said a word to me. They were very busy talking to each other. I felt like a piece of raw meat waiting for the butcher to cut up. The simulation is a bit scary in itself. The room is darkened and cold and the walls are covered with computer monitors. On the other side of a glass partition is more techs or doctors sitting at a huge consil. It looks like the control room in Houston for the space shuttles. When they were done they dismissed me without another word except to come back in two days to have my markings darkened and not to take a bath. Two days later I went back. They were very busy so a doctor took me to an empty office and had me pull my pants down and my skirt up while he painted the markings. I had to lie there until they dried. The doctor left and a few minutes later the owner of the office entered surprised to see me half undressed on her exam table. She was pretty cool about it, but I was still embarrassed.

The day came to have the actual treatment. I was called into a large room with a huge piece of equipment and a table extended from it. I was instructed to undress behind the curtain in the corner. Again there is no robe or sheet to cover up. I asked the tech for a sheet and he said just come out. "If you'd seen one bum you've seen them all. If they gave a sheet to everyone they'd have too much laundry." So I brought my own each day. I did not need to feel embarrassed or humiliated by this experience, but their total lack on humaneness was remarkable. I felt like a piece of meat. I was just a uterine LMS, nothing less, nothing more. I wasn't a person only a neoplasm. A week into the radiation, I started bracky therapy. I won't say too much about this, only it must have been a sadistic man who invented this. A radioactive tampon (an XXXL size) is inserted up your vagina and tied in place, which is painful and humiliating if you mind a room full of nurses and doctors looking at your private parts. After about a week and a half of treatment the side effects started. I had fever and nausea and diarrhea. Each day it got worse and worse and I still had my daily radiation. After fifteen days of consecutive fever I was finally admitted to hospital and spent three and a half weeks in "salvage" treatment. One of the radiation doctors who came to visit me said, "I am very happy my treatments did not kill you". He was saying it as a joke but I often wonder about the truth in that statement.

After 10 months of treatment I was finally done and finally able to claim my life back. I gambled with a long shot and won. Only it was short lived. The August CT showed the first lung metastasis. It was a 7mm nodule in the right lung. Too small for surgery and too small to waste bone marrow on so we were in "wait and watch" mode. Wait and watch is really torture mode as you are actually doing nothing and waiting for the tumors to grow. You're in limbo, not here or there. Can you do something to influence the outcome or will it make things worse? The Nov CT showed growth plus more mets. A thoracotomy was performed in December. If nothing came back I'd still be NED and the long shot paid off. Unfortunately, the February CT showed multiple mets in both lungs and chest wall. The long shot did not give me that sought after "cure" but it did pay off as it gave me time. Precious time with my family and friends, time I am paying a premium for, time where every minute counts. I wake in the morning ready to shout the Shechechiyanu blessing – thanking G-d for keeping me alive, and sustaining me and bringing me to this season - how many of you feel that way? How many of you just mouth the words, today is like any other day, this holiday is like any other holiday? My battle is still on. Through subsequent failed chemos and drug trials, I am still looking for the next treatment that will put this dragon to rest. I am daily on the battlefield field with my boots on and broadsword in hand fighting the LMS dragon. I am Robin Kohler, 26-month survivor.

Dear students, the point I want to make to you is there is a person behind the diagnosis. You are not just treating a disease, but you are treating a person. Some like me want to know everything and do everything to get well. Some will be more passive and others will not want to know about their disease but will follow instructions. Healing involves healing all aspects of the person, not just the physical body. Getting to know your patient is the first step in that process.

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Last Edited - 23 November 2007 22:07 pm