Olga's Story

Olga, Ewing's Sarcoma Survivor

Olga was 28 when she was diagnosed with Ewing's sarcoma at the tibia. Her treatments included chemotherapy, two surgeries and an amputation.

I am from Russia and grew up in a big city, Moscow, with a population of 12 million people. I have been pretty healthy all my life and only visited doctors for simple colds. I am a healthy eater and have been very active in sports.

Since I was a little girl I always wondered why God blessed me with so many things but gave me huge bunions on both feet. Now I can see that those bunions actually saved my life. And this is how it is all got revealed to me.

I had a great opportunity to come to the US in 2003 as a graduate student at Bowling Green State University in Ohio. It wasn’t my dream, like it is for many other people, and now I know that this opportunity was given to me for the reason. I completed my second master's degree in chemistry and was accepted as a chemistry instructor at one of the community colleges in the Midwest. My life was moving forward and my hard work was finally paying off.

In the summer of 2006 I finally decided to take care of my bunions and scheduled the surgery for the correction on both feet at the same time. Before that I noticed that I was having a little annoying pain in my left ankle, almost like I twisted, but I knew that I hadn’t. I visited two different doctors about it but got the same reply: "No wonder, you have pain. I am surprised how you even can walk with such severe bunions." At this point of my life I was very active and I thought maybe I pushed the platform for leg exercises with too many weights. Later, the most interesting part of my cancer for the doctors was that this pain was somehow related with my cycles. This pain was repeating every single month at the end of the month just for 3 days and then would go away. This is why I wasn’t concerning about it too much for the first six months I had it.

My bunions correction surgery went pretty well. However, I the same came back again at the end of the month. I shared my concern with my surgeon and he said: "Calm down. You just had the surgery. Of course, it hurts." And I replied: "You don’t understand. I had the bunion surgery on both feet but the pain is only in my left ankle, and the pain is exactly the same as it was before the surgery." I insisted on taking an x-ray a little above my feet since we were doing x-rays of my feet anyway every two weeks after the surgery. Only now I can say that my own persistence saved my life. I would not say that doctors are bad, it is just that I am the only one who knows my body the best.

After the x-ray was taken, we waited about an hour in the office. I really started to worry that something was wrong. The doctor got back, he placed the x-ray film and showed us a dark spot on my bone on the film. He said: "I don’t know exactly what it is," and I bet he knew what it was, but he wasn’t qualified to make this call. So he suggested that we see someone immediately. It was already almost 4 pm, but the doctor made all the connections for me to see the oncologist right away since I was already in Fort Collins, CO. I was scared.

We immediately went to the recommended place and it was almost after 5 pm, but the oncologist was waiting for me. He looked at the x-ray film and gave me the news: "You have a cancer." I lost it. I started to cry and even couldn’t think straight because back in my home country the words "cancer" means "death." The doctor was clear that I still had a chance to survive. I remember sitting waiting for my blood to be drawn, and I felt like I was playing a role in a movie, and everything that happened within the next few hours was just a movie role for me to play. It felt so unreal.

Then everything happened so fast. I was scheduled to see the surgeon at the Colorado Limb Consults. She was surprised with my diagnosis of cancer that was based only on the x-ray. She actually gave me a hope for a few days because she said that only biopsy can prove if it is a benign or malignant tumor. The biopsy was done and then there were the long days of waiting the results. She called me and explained to me that I had Ewing’s sarcoma. I understood the word sarcoma but had no idea what the first word mean. I googled everything at home. I was so eager to find some similar stories and, most importantly, to find out that people survived this cancer and lived happily after. Most of the stories were tough but inspirational. The word "amputation" presented in many stories but I even couldn’t comprehend at that point that this tiny dark spot on my bone could lead to the amputation.

Treatment

The chemotherapy was supposed to start immediately. However, we already had tickets for a vacation to the Mexico for the first time in my life. I scheduled this trip as a reward to myself for going through the bunions surgery on both feet at the same time. I explained to the doctor that without this vacation break it would be very hard for me emotionally and physically to dive into the new hardship of battling cancer. Of course, the doctor left this choice up to me, and I had decided to go on the vacation anyway, hoping that one week's delay of chemo would not make any difference in my cancer development.

The day we flew to Denver from Mexico we stayed at the hotel overnight. First thing in the morning the surgery for inserting the port was scheduled. I was full of the anxiety. Only now I know that the port was very helpful for chemo treatment and during the all of my surgeries. Many times I was so weak that there would be no way they could find a vein on me. Plus, chemotherapy affects veins too. They became weak and narrow.

I underwent 13 months of chemotherapy, a total of 17 cycles. The chemo was tough, every three weeks the cycles of 1 day and 5 days in a row. I would go to the cancer treatment room at 8 a.m. and would stay there until 5 p.m. Many times I was frustrated that my chemo treatment was so long every day, and I would see that some people would come just for an hour or two and leave. I couldn’t understand why my chemo was so harsh. Only later I discovered that many people who came to chemo treatment for an hour or two were terminal patients, and doctors were just trying to keep them alive with different chemo treatments. In my case we were strictly follow the protocol of the aggressive chemotherapy.

At the beginning, my major concern was about my beautiful long hair. It is actually very silly to me now that it was my concern. I believe that losing my hair was for the best because I had no energy to take care of long hair through those 13 months. I adapted to the wigs pretty easy and was able to wear them almost every single day. Some people didn't even know what I was going through. I was still teaching during the days when I wasn’t in the chemotherapy. The hardest challenge was to bring myself back into the hospital for another round of chemotherapy. Because after 2-3 weeks breaks, I would just start feeling "normal" again, and then I had to bring myself back in to be poisoned. I would come to the chemo room feeling sad but at least full of energy, and hour after hour it would just destroy me. I would become so weak. The five-day cycles were the hardest because I felt that I was almost living at the hospital.

After four cycles of the chemotherapy the major surgery "wide excision of sarcoma and intercalary allograft with rectus abdominal muscle free flap" was scheduled. It was a ten-hour surgery, a very tough one. I woke up with a piece of "ham" on my lower leg, and it was actually my stomach muscle that was placed on top of where the surgery took place. It was called a free flap. Then I was bleeding on my upper leg area because of the skin graft. Through the years the free flap healed very nicely leaving just a massive discolored scar. After the surgery was the first time I was introduced to crutches. Overall, I would be on them for three years total.

The surgery result was good. The surgeon said that my cancer tumor was 90% dead, which meant that it was responding to the chemo treatment. Although I couldn’t understand why I needed more chemo treatments if my cancer was local, and it was dead, and it was taken out. However, doctors do not take any chances and follow the protocol of 17 cycles of aggressive chemotherapy for Ewing’s sarcoma patients.

I stayed as positive as much as I could through the chemotherapy and the surgery recovery; however, I could feel that it was harder and harder to keep my spirits high. The doctor suggested that it is about time for me to get some help with antidepressants. I refused them for a few months, but then I agreed that I needed some medical help to feel stable through the days instead of having so many highs and lows. I believe it was the right decision. My antidepressant was Cymbalta. Another medication that I found very helpful through my battle with the cancer was Ativan. It helped me to relax, sleep better, calmed the nausea and relieved anxiety.

Dealing with Infection and Pain

One of the happiest days in my life was the last day of chemo, October 2nd, 2007. Chemo was done and it was time to recover. I was on crutches from December 2006 until the summer of 2008. It was nice to start walking again, but I was in pain every day and needed Vicodin daily. Plus, I was taking antibiotics for about five straight years

My life changed again in spring 2010 again. Since the major surgery in 2006, I had a metal plate with many screws in my leg and of course anybody can develop rejection to the artificial material inside. And I did have infection. I started feeling pain with every single step and had to pick up the crutches again. The doctors’ appointment brought up the word "amputation" again. It was my original first option in 2006, but at that point I even couldn’t think about it. I was just accepting that I had to fight cancer, and I couldn’t imagine losing my leg. I actually told my surgeon: "Why would anyone agree to an amputation if there was even a slight chance for surgery to save the leg?" My surgeon replied: "You would be surprised. A lot of people do, especially men, because they have to go back to work and provide for their families." Only later I understood the truth of those words because I was on crutches for three years, and it was a good thing that with my teaching position at the college I could afford to be on crutches. Plus, I was in constant pain, and it really drains you.

Anyway, even in spring 2010 I was not ready to give up my leg. I suggested to my surgeon, Dr. Kelly, a procedure that involves an external fixator. The whole idea was to remove all the metal and cadaver bone from my leg, then attach the Illizarov apparatus with pins going in and out of my leg. By making the precut right below my knee, I would be able to click the nubs 3 times per a day and move the bone from the top to the bottom and therefore to regrow new bone right below my knee. In theory the plan was great because we would be able to get rid of the infection, and I should be able to regrow the 10 inches of bone that was lost during the first surgery when they took out the tumor. Once again, this surgery had no guarantee, but I was willing to try.

The Second Surgery

Olga with the apparatus that she wore on her legThe second major surgery was scheduled for June 8th, 2010. The recovery was tough. The apparatus was huge and heavy, about 10 pounds. At the beginning I couldn’t even move my leg with the apparatus. I was on vicomycin IV every eight hours for six weeks, and I could apply it at home myself. The pain was enormous, and I was taking OxyContin for a year, and later my pain management doctor placed me on fentanyl patches. I almost got overdosed with those patches because my doctors didn’t calculate the correct dose. It was very scary when I couldn’t finish lecturing because I was out of breath. And once again my persistence in dealing with the doctor saved me again. The whole year with the apparatus, carrying 10 lbs on my leg 24/7, being on crutches was very tough. The good part was that only my left leg was affected, and I was still able to drive on my own.

Later I had a check-up to see if the bone was growing and it was, but it was very weak. Plus it wasn’t healing on the bottom where two of my bones met. At this point in April 2011, I started losing it. I couldn't handle another year or so with this apparatus with no guarantee that the new bone would ever be dense enough for walking. I have read a lot of stories about people getting out of the external fixator too quickly, only to have the bone break and then to start reconstruction all over again. The word amputation would appear more and more often in my head, but how could I make this decision after everything I had been through? I couldn’t make this call because it would mean giving up. I had a final visit with the Dr. Haun, the surgeon who placed the apparatus in my leg, to see if there was more progress made in the last few months. The verdict was "no progress," and the surgeon suggested that at this point we had tried everything we could to save my leg. It is hard to explain, but I was almost ready for this call from him, because my body was so exhausted from the apparatus and my life activities were limited.

Amputation Below the Knee

Olga with the apparatus that she wore on her legI asked to schedule the amputation as soon as possible. This surgery was the easiest of the all. It only took a few hours to remove the apparatus and amputate my leg below the knee. For the first time there was no need for an epidural and strong meds after this surgery. The major struggle right after the amputation was the phantom pain. This pain is very hard to explain to anybody who hasn't had it. Our nerves are in constant conversation, in other words they are sending impulses and "talking" to each other in different parts of our bodies. My leg was amputated, but the nerves are still shooting to my foot even if there is no foot anymore. Phantom pain can be very annoying, and I used the medication Gabapentin to help with this issue. Plus, wearing a tight special-needs sock over the limb helped too. As everybody promised, the phantom pain calmed down and it did. I used this medication only for the first eight months, but I had to use it every single night. There was no way that I could fall sleep without it. This is how serious phantom pain was. I probably shouldn’t even call it pain, because mostly it was a very annoying sensation.

Recovery and Physical Therapy

After the amputation, I spent two months in my bed, not because I couldn’t do anything, but because for the first time I allowed myself to slow down. Those two months spent in the bed I finally allowed myself to reflect on everything that happened to me for the last five years and grieve about it. While did it take me five years for this moment? It is just because I was always on the run. I had one surgery after another with recoveries from each, along with physical therapy and keeping up with my work and relationships. Finally, I could just lay down in the bed and do nothing. I was sleeping every single day until the late evening then I would get up, eat something very light and back to bed. Amazingly I would sleep through the days and the nights. Many people were worried about me that I was depressed, but I can say that I was healing. Once I got my prosthesis, about 1.5 months after the amputation, I was so determine to walk normally and well that I was working hard in physical therapy. I was getting better and better, and after only a few months I was walking without a limp.

Life Now

Now people look at me, and they would not even know that I have a prosthesis. Interesting enough, I even forget about it sometimes. I used to think that an amputation would end my normal life, but I do have a very normal life right now. I go to the gym pretty much every single day. I walk on n aeliptical machine for 2.5 miles and I love it. I can dance. I can travel again and walk a long distance. It feels so good after so many years of suffering to get my life back.

Olga after the amputation

Many people would say, "I wish I would know that all the surgeries wouldn’t work out, and I could have had an amputation right away in 2006." But I would disagree with that. I am afraid if I had faced it all at once: losing my leg and my health and going through chemo, I wouldn’t have grown spiritually as I did through all these years. By the time I had to have the amputation I was ready for it. I accepted it with all my grace because of everything that I had been through. In my heart I knew that I tried it all therefore I had no regrets and no "what if's" in my head. I am at peace with everything that happened to me.

I am happy to admit that I do not take any medications anymore. I weaned myself off the serious pain killers. It wasn’t easy because through the years I developed dependence on them but it was my ultimate goal to get off all the medications.

I weaned myself off of the antidepressants because I am strong enough to experience all of my feelings. I called it the "rainbow of emotions." Is it always easy? Of course not, but it doesn’t mean that I need to get more drugs and prescriptions. I was on heavy medications for five years, and I couldn’t wait to be clean.

I lost my periods during the chemotherapy and went to the menopause. Many doctors gave up on me after almost five years without periods on my own. However, I believed in my heart that a human is a such a unique creation that the doctors could not know for sure if I would recover or not. I went into menopause at a very young age. I was very healthy overall before I got cancer; therefore I believed that my body might still recover, and it did. I called it a pure miracle that I finally I got my periods again just recently.  It gives me a hope that I might still have a chance to be a mom one day. I don’t know if it was a pure miracle or the hormone replacement therapy from the compounding center. It helped me to get my periods into the cycles again. I applied progesterone and estrogen creams into my skin for about 6 months and the periods did come back.

Overall, to summarize my survival story, I learned that there is a light at the end of the tunnel, even though there were some days that I just couldn’t believe that this nightmare would ever end. Cancer survival taught me to take one day at the time. It also taught me to keep a positive attitude and remember that somewhere somebody is dealing with an even worse situation. When I was on crutches for three years I kept reminding myself that somebody would give anything to be in my place on crutches instead of being paralyzed or something else. I learned a very true saying: "I used to cry that I didn't have shoes until I saw the man who doesn’t have feet."

My cancer survival put everything in perspective in my life. I have learned not to sweat about small stuff, to appreciate little things, like the ability to get up in the morning and be able to move. It showed me who my friends are. It brought me closer to God as I had never been before. Now I consider God not as a last resort but my first resort.

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Candice Link 25/02/2014 03:30 pm
Olga - I just read your story and found it very inspirational! Thank you so much for sharing. My baby sister is going thru chemo treatments right now for Ewings and so I shared your story with her. She just wrote me back saying you two have already been connected and have been talking! How cool!
Just wanted to say thanks for sharing and am happy that you can inspire other people!
Hugs & High5s!
Candice
Inna D 13/08/2013 09:32 pm
Hi Olga,
Thank you for sharing your story. It’s amazing what you had to go through and it is so good to hear that you are doing well now. I can relate some of the things you went through since I have been fighting leiomyosarcoma for couple of years now but my battle is not just over yet. God bless and good luck!
Inna
Brian Zimmer 25/07/2013 02:09 pm
Dear Olga,
Thank you for sharing your story. You are truly inspirational. I can only hope that I have the same courage and strength as you. Take care Olga and I will include you in my prayers.
Brian
Elizabeth Kane 16/04/2013 06:20 pm
Dear Olga,
Thank you for sharing your story. It sounds like a long and painful journey, but it is reassuring to hear that you've come out of it in good spirits and that you're living a happy and fulfilling life.
Tayve Neese 14/11/2012 12:17 pm
I know that your story will bring much understanding and healing to those who are going through a similar struggle. Your story also reminds EVERYONE how important it is to choose to find happiness and beauty in life, even during difficult times. You are amazing, Olga. Thank you for sharing this with me. xo