Amethyst Volera

The Redirection of a Soul

You may not see what value is in a life struggle when you are in it, but in retrospect you will recognize it as being one of the most important of life’s lessons. After being diagnosed with a rare type of cancer, surviving a 14-hour surgery to remove a tumor on my brain stem, paralysis, hearing loss and upcoming radiation, I now see how the disease was a lifesaver.

This article may be controversial; people will ask how cancer saved my life. The truth is cancer has let me live again; cancer to me was a blessing in disguise. It meant an end to emotional turmoil that I had once held back by a fear to confront.

After my diagnosis, my outlook on life became one of positive energy and thoughts. I didn’t want to die anymore; there were no more nights of holding a knife to my chest. I wasn’t fantasizing about ways to kill myself, or wishing that I were dead. I wasn’t having sex with strangers. The diagnosis would be another hurdle in my life that I needed to overcome. I had already conquered many of life’s challenges.

At 19 months I was diagnosed with a rare bone disease called Olleir’s. Olleir’s disease creates benign tumors in the extremities. In my childhood years I had multiple operations to remove the benign tumors. I had nine surgeries from the ages of seven to sixteen. The disease caused lumpy and bumpy appearances. I was ridiculed by classmates who referred to me as a monster. Another struggle that I overcame was growing up in a home with an alcoholic parent who would belittle the self -esteem of everyone in the house and use us for punching bags.

At age 17, I was raped. This has been the hardest hurdle for me to understand and forgive. I had no support around me at this time; my family persecuted me and denied my innocence. I finally called the Rape Crisis Center, where I entered treatment. I learned a lot about myself in therapy. I refer to the day I was raped as a feeling of “my soul being ripped out of me!” After the rape I became a sex addict for several years, abusing my soul and body. I thought that this would ease my pain.

In December 1999, at the age of 25 I had no symptoms that I was ill, I felt great. I went to my doctor for a regular check up, and she found that my right tonsil was swollen. The physician sent me sent me to an ENT specialist, and from there I went to have a CT scan, then an MRI scan. I then had a needle biopsy, which came back inconclusive, which was followed by a surgical biopsy, which came back as Chondrosarcoma (cancer of the cartilage) of the pharyngeal space/skull base. Chondrosarcoma is very rare, which makes finding information about the disease difficult. We wanted a surgical team who had dealt with this area before, therefore I had a consult at Memorial Sloan Kettering and within two weeks I was scheduled for surgery. The surgery would be extensive, it would require my ENT doctor, two neurosurgeons, and a plastic surgeon, and an ear specialist. The overall operation took 14 hours, but I thought of my family and friends sitting in the waiting room for all that time and the worry they felt. The surgery would leave me paralyzed on the right side of my face similar to paralysis in stroke patients, and I would also lose complete hearing on the right side, because they had to sever the nerve.

Recovery from the surgery went well. I was very motivated within three weeks of the operation. I was hiking in five weeks, and I was back roller-blading. Memorial weekend I kayaked, and did an eight-mile hike. I decided to volunteer with my spare time. I took a class to become a court-appointed specialist advocate, and also started to volunteer with a rehabilitation counselor. I became more alive and motivated to live, making plans for my future to return to graduate school. These are just some of the blessings that I came upon when my soul opened up to see the ray of light. They say when it rains it pours, but now I say when there is a glimpse of sun, it is destined to shine.

I came upon a website ( www.acor.org) that has listservs for specific cancers. The site provided me with Sarcoma@listserv.org which gives support and prayers to patients and family members. The site has lost several members to the fight of cancer; their families stay to encourage the others. My job at a local non-profit agency which empowers people with disabilities, donated money from their vacation hours to help me with medical expenses. They have been the most supportive workplace, spending quality time with me when I have been unable to work.

Finally, the relationship between my mother and I, which seemed dissolved, has improved. It took my diagnosis to make it stronger. She admitted that she was afraid of losing me to this. We can now talk more honestly and open about things. We spend quality time together doing things we both enjoy. There is a residual tumor on the brainstem so I will go under radiation. It is a special kind of treatment that is only offered in two medical centers in our country. It is called Proton Beam radiation; it is safer because it destroys cancer cells, not the tissue around it. The downside of it is that it is an unusual high dose of radiation.

As I look into life, I can envision one that I want to be a part of, one that I want to live. I thank my higher power for bringing me on this life challenge.

So I say to all of you, stay active, positive, and supportive of each other. Together we will beat this cancer you know your challenges are not over, but you are grateful how something like cancer can actually be the motivator for such a huge amount of healing.

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.