Tuesday, July 31, 2012

A long, overdue update

The last few years have brought many challenges and many gifts. While it has not been an easy path, I am so grateful for all I have received and learned.

I have been very quiet about my journey, at first because I had been too ill to write and later because I had too much to share to begin. I am so grateful for all the support and love I have received from my friends and family and the software development community.

In just a few short weeks, I will be labeled as officially cured of Aveolar Rhabdomyosarcoma. It was just three years ago, that I found myself praying to make Christmas and unable to imagine my daughter's second birthday.

Today, I find myself planning her 4th birthday!

I'd like to share a bit of my story and to connect everyone with my journey.

During treatment, I lost many friends and watched many suffer. As a pediatric patient, I lived at the Ronald McDonald house and was treated with children. Day in and out, I watched parents by the bedside of their little ones. Experiencing a pain I could not imagine. Each day I was so thankful it was me who was ill and not my daughter.

The Ronald McDonald house was a home for me. It is an amazing community and home for so many families. Without this wonderful support system, there would be many families without the means to live by the best hospitals for their children's disease.

And in the world of cancer, where you receive treatment has a huge impact not only on your chance of survival, but the experience along the way.

How fortunate I was to be living in New York, and be treated at Sloan Kettering. I fought hard to be treated in an outpatient facility before my treatment started because I didn't want to leave my little girl. I am very thankful the doctors convinced me to be in Sloan, which saved my life. It afforded me the ability to have experimentally high doses of chemotherapy and tolerate the side effects.

As a pediatric patient I also benefited from the activities for the children, such as the clowns, pizza Wednesdays, musicians on call and dance therapy. Every doctor and nurse greeted every patient with genuine love and compassion.

About 1/2 way through treatment, I started 6 weeks of radiation.  People often think of radiation as easier than chemo, but as my oncologist says it makes you "sick as a dog." The side effects of radiation are intense and long lasting.

After radiation completed, I continued on my chemotherapy regime. The drug doses were reduced 25% and then 50% -- alarming for any patient to hear, although it turned out that everyone drops their dose. We joked that they should tell you that you are dropping to normal high dose levels of chemo as that was true and less scary.

By March, I was excited to receive the results of my post radiation scans. We all expected me to be officially cancer free and it was a surprise (at least to me) that the cancer remained. I was told I would need surgery, a surgery I had been told at the beginning of treatment was unlikely to cure this disease since it was in my sinuses.

While this seemed like another uphill battle, it ended up being a wonderful break in treatment. The delay in chemo to prepare for surgery gave me time to spend with my daughter, where I was healthy enough to pick her up (something I had rarely been able to do in the previous 8 months).

This break also gave me the mental focus and alertness to read Anticancer, which inspired me to take up a new diet and revisit my role in curing the disease. I started a healthy, anticancer diet (which was a big change from the chocolate hagaan daaz diet I had taken up during radiation -- in my defense it was all I could tolerate because I had no saliva, everything else tasted horrible and it was painful to eat!) and tried to incorporate very light yoga into my routine.

I was scheduled to be released from the hospital the day of my 30th birthday. A milestone I was unsure I'd meet just a few months prior. And it was a great birthday gift to be officially cancer free. I began chemo the following week and completed treatment without any other breaks by July of 2010.

At the end of treatment, I was as sick as ever. I had been through a year of intense chemo, radiation, lack of movement and emotional trauma. I was eager to start healing both physically and emotionally. At first I focused on getting through my August scans.

When they came back clear, I was so grateful.

It was at my daughter's second birthday and I was officially cancer free.

The next year I was devoted to being with my daughter and regaining my physical health. I continued on the anticancer diet and spent much time dedicated to being healthy. Physical exercise was incredibly difficult for months after treatment, though I was able to add gentle yoga.

I was unable to return to work physically and emotionally. As the year went by, the disease returned in every friend but one from treatment.

In everyone, it returned the week they went back to work. It seemed like a rather risky venture to return to work!

One year after treatment ended, I celebrated as I knew that 75% of reoccurances happened within the first 2 years of diagnosis for rhabdomyosarcoma. My physical health was much improved from the previous year and every month I felt like a new person.

My focus shifted from physical healing to emotional and spiritual healing.

I found a yoga and meditative practice that helped me heal from the traumatic events of the previous years and let go of many attachments that were unhealthy. In the fall, I became certified in an eclectic healing technique that I had personally experienced transformation though, both physically and emotionally.

By the winter of 2011, I had accepted I was in an unhealthy, unhappy marriage and very much wanted to live in New York City. I needed to be close to the RMH and Sloan so that I could share some light with these challenged communities.

By January 2012, I found myself living in NYC and traveling every month to become certified as a yoga teacher. My dream of helping other patients and survivors was becoming real.

During my spiritual journey, I connected with a person who is a bit of a mathematician and very wise in esoteric spiritual wisdom. He and I shared a vision of helping people find Love using this wisdom.  Before I knew it, we created a partnership and Love Through Wisdom was born.

So, after a year dedicated to following my heart, traveling, studying, meditating and praying, I landed back in the world of software.

I am so grateful for all for your support through the years. I had been mostly silent and I want you to know that the healing love brings is infinite. Thank you.