Lisa Boylan

I would like to share my story with you …

I can now add cancer to the long list of things that have defined me. Other things, such as receptionist for a world-renowned rock band, local television spokes-model, and designer of surfing t-shirt’s – those things were much more fun … however they probably didn’t shape me in the way cancer is shaping me now.

My tumor had a name. We called it my “Designer Tumor” because it was rare and, like rare designer things, I would have it. It became easier to think if it as such and to use humor in dealing with what is a painful and scary subject.

Getting my tumor correctly diagnosed by a doctor was not an easy process. In October 2008, after feeling a lump in the upper right quadrant of my abdomen, I went to my general practitioner who then referred me to a surgeon who ordered an ultrasound. After determining that the ultrasound did show a small lump, I was diagnosed with a lipoma (a fatty cyst) – nothing to worry about. Losing weight was the prescription from this surgeon, and I was so disheartened and somewhat embarrassed. Upon diagnosis, I then went back to my GP who referred me to yet another surgeon – one that specialized in the gastric area. He sent me for another ultrasound and also a CT scan (January 2009) … and had the same conclusion as the first. Along with embarrassment, came depression and confusion. I could feel the lump, I had researched lipomas and knew “something” was wrong, and yet, no one would listen.

Finally, in May 2009, I went back to the last surgeon I had seen and was more insistent – “something wasn’t right,” “the lump feels tender and uncomfortable.” I reminded him what he had diagnosed the lipoma to be, so after he felt the lump again, he said, “Hmmm-that’s not a lipoma.” (I soooooooo wanted to say, “SEE! I told you so”, but somehow refrained from such childish finger-pointing.) An incisional biopsy was then scheduled where a portion of the tumor would be taken out and sent to various pathology labs across the country. It took a month to diagnose it (one of the longest months of my life) and get the answer …

… I had a Desmoid tumor, which is a soft-tissue sarcoma. Locally aggressive, this tumor can take over entire organs, muscles, nerves (like a weed with very long roots) – and although it does not metastasize, it can be fatal. I’d heard of people who have lost limbs, have had numerous surgeries and years of chemo/radiation … was this going to be me?

Based upon my countless hours of research, I learned that it is highly recommended to consult with a surgeon who has had experience with Desmoid tumors … and thankfully, mine had. Apparently, most surgeons will never come across one of these tumors and because they disguise themselves as muscle (or tissue), they are extremely difficult to diagnose.

I take pride in being unique – but this was going a bit too far.

OK – plan of action … surgery was scheduled promptly and within a matter of weeks, my life had drastically changed. Because of this surgery and the recovery period it needed, I would be unable to work or even care for my children (beautiful boys – ages 7 and 2). If I couldn’t work, well, then we couldn’t eat or pay all our rent; we would need to sell a car and make some gut-wrenching decisions at that point. Decisions that I’m sure many have had to make.

While I have a pretty mellow attitude toward things, there wasn’t time for me to waste. I became desperate. I needed to find care for my boys, find money for our home and to feed my husband (he is going to an intense military language school and is very military-fied at this point) … and if I couldn’t do all this, then what? This is when fear crept in. This is when doubt began to form. This is when I started to feel “flawed”. This was when I cried for the first time.

Feeling flawed was new to me. I have never experienced such a sad weight as when that emotion started to rear its ugly head. Flawed. Flawed. Flawed. No matter how I said it, I felt flawed. Because of me, our lives would change … and I didn’t like that.

Yet, however flawed I was feeling, I – thankfully – found some energy (trust me, I’m usually pretty lazy). I went on the hunt for financial help: through the military, through cancer organizations, through the local Salvation Army. Anywhere I could send an email, I would. Apparently, some of my emails got into interesting hands. I guess I kept emailing one of the heads of the Salvation Army and a couple Major’s in the Army. Oops. BUT, (thankfully) those emails saved me from having to pack up my lovely home and move in with my mom at the age of 39. We received some financial help from two wonderful organizations and also some family members. My boys were to be cared for by my mom (thank you, mama) for a period of two weeks and would then join me at my aunt’s house (thank you, auntie) for the rest of the recuperation time. I am well aware of how fortunate I am in this way. Many people are unable to find help, don’t have insurance, and don’t have family nearby … that makes me sad. Everyone should have help and resources and for those who don’t, I’m so sorry … my heart aches for you.

Without the above mentioned, I would be lost. My boys are my life and their care is as important as mine. They are “survivors” of cancer because they have actively participated in my life – a cancer patient. To me, a survivor is one who takes an “awful something,” perseveres through and comes out smiling. Survivor’s are everywhere. My husband, my family, my friends are all survivor’s – they faced this awful disease with me and never lost hope.

Okay – on to the surgery. My surgeon was able to take out the entire tumor along with clear margins. He also took out my gallbladder since there were gallstones. I begged (literally, begged) him for a tummy-tuck too, saying, that “if I have to have cancer, you have to give me something to look forward to!” I also told him that if I had to have chemo, then I was coming back as a platinum blonde. A platinum blonde with a tight tummy … apparently I have a secret wish to be Malibu Barbie.

The tumor was taken out along with part of my abdominal muscle. It was replaced with mesh that is laying across my abdomen to prevent a hernia. I usually don’t feel the mesh, except when I’m getting up after sitting on the couch for too long. I still get grossed-out about it though. I actually laid in bed last night wondering if because of the screws around the mesh will set off the airport metal detector?

Recovery: Grueling. Painful. Drug-filled. And to top it all off, I was having issues pooping. They wouldn’t release me from the hospital until I had a bowel movement (I kind-of didn’’t want to leave since I was eating lobster ravioli, salmon and amazing shrimp there), but I spent some time on the bathroom floor trying to do weird yoga stretches that a friend had told me about to “loosen the bowels.” Thank God no one saw me. I posted pictures of my incision on my Facebook page. I figured, “Hey, if these people are my friends, then there are coming on this journey with me.” One friend wrote in response, “great to know you’re up and around!… could do without the pics … got my attention like a train wreck on my news feed.” Guess they were pretty gruesome.

My recovery was pretty intense for the first 3 1/2 weeks after surgery, but my doctor’s had thought I would be out for much, much longer. Although I am unable to work right now, I am able to care for my boys and our home. Our financial situation is awful and money is getting low. I get tired easily. My incision bugs me sometimes. BUT, I have survived cancer.

One thing I would like to say is that I don’t know if I have fully understood the magnitude of what has happened. I don’t think I have experienced the full range of emotions that are deep within me. I use humor as a means of coping and while it definitely helps, it may also hinder me in some ways. I think I’m afraid of going too deep and allowing that vulnerability to surface. I am scared of the unknown.

Now, at 2 months and 1 week post-op – I got the results of my latest CT scan today. All CLEAN. No more cancer. Thank God. Seriously. Desmoid tumors have a very high recurrence rate, however I think/hope/pray/plead that mine is gone.

Each day marks a milestone for me. Each moment is another precious moment with my boys and husband.

I am now committed to helping find a cure. I am a survivor.

About Sarcoma Alliance

The Sarcoma Alliance strives to improve the lives of people affected by sarcoma through accurate diagnosis, improved access to care, guidance, education and support.