What I Did On My Summer Vacation

by | September 17, 2015

“Some days there won’t be a song in your heart. Sing anyway.” – Emory Austin

The story of my vacation, if we were to call it a vacation, would have to start earlier in the year. Let us go back to March, 2015. Spring is the works! The birds are singing, the sun is warming the earth and the air still brings an occasional slight crisp breeze with it. There is a lump in my throat and it is not a spring peeper.

I am sitting in a new doctor’s office. I feel confident and eager. Confident because she came highly recommended, although I have never met her before. I am eager to meet her, eager to get this exam over with and eager to get out of this new gynecologist’s office. She was very pleasant and professional. I like that in a doctor. We did all of the routine stuff, well she did most of it while I assisted in providing the necessary body parts and accompanying anxiety. When all was said and done I sat there listening to her give her medical speech on self-breast exams, the importance of annual mammograms and so on.

She then led me to the laboratory. I knew what to expect here too. I waited. When my name was called I followed the laboratory technician to the designated chair. She drew my blood and I was on my way. I felt good about this visit. Everything was routine as expected. All except for the lab test and results I would be waiting on.

 

A month earlier my sister was diagnosed with breast cancer and through genetic testing it was discovered that she carried a rare hereditary genetic mutation. I was quickly advised to get the same testing which lead to the referral and visit to the new gynecologist. My sister had already undergone several studies and surgeries by the time my results were in. I wasn’t expecting my test to return positive, but it did.

I’ll never forget what my new doctor said “knowledge is power – that’s why we do these tests.” As a nurse I agreed, but now it was personal. I have always tried to remain positive and grab the silver lining at every opportunity. Yes, knowledge is power and this was my first silver lining.

Over the next few days and weeks my new doctor quickly became my new friend. She guided me to the team of specialists that would be taking care of me and she explained the surgeries and expectations for each. I met with a genetic counselor, a gastroenterologist and a breast surgeon all within a month or so. I had a lot to accomplish and a lot to learn about my new diagnosis, Lynch Syndrome.

Lynch Syndrome is a hereditary disorder caused by a mutation in a mismatch repair gene in which affected individuals have a higher than normal chance of developing various types of aggressive cancers, often at a young age, such as colorectal cancer, endometrial (uterine) cancer, gastric (stomach) cancer, liver cancer, ovarian cancer, small bowel (small intestinal) cancer, pancreatic cancer, urinary tract cancer (bladder or ureter cancer), kidney cancer, bile duct cancer, certain skin tumors (called sebaceous adenomas), and brain tumors. People with Lynch syndrome may also be at increased risk of breast cancer and prostate cancer. Due to my family history and positive genetic mutation discovery, I was well on my way to the operating room!

 

My first surgery, a colonoscopy and EGD, were scheduled for June. What better birthday gift to give myself than a clean colon! The prep was intense and thorough. The biopsy result comes back negative.

My next surgery, a total hysterectomy, was scheduled for July. No major prep needed, just the usual preoperative lab work and clearance from the hospital and the green flag was once again waving. I don’t know where my sense of humor went that morning, but it checked out and emotions and anxiety checked in. I was scared. I don’t know why, but sometimes it is the unknown that scares us the most. I cried the whole time. My body shook and I remember kissing my husband goodbye as they rolled my hospital bed towards the operating room once more. Please let me wake up again! I did. I was in so much pain this time and the itching was incredible. Drugs? Oh yes nurse, I will take whatever you have on tap! The surgery was over and although my husband and I knew we didn’t want to have more children, the choice was now forever taken away from me. This is still hard to accept. I never wanted this surgery even though I made the choice to have it.

So fast forward through the follow up appointments, the emergency room visit for increased pain and shortness of breath, and fast forward through the intense surgical bloating to August.

My third surgery, bilateral mastectomy, was scheduled for August. I can’t say my husband and I slept very well that night. Knowing you are facing surgery in just a few hours does something to your sleep pattern. It really messes with so many things in your life! However, I was much calmer and ready that morning. We arrived at the hospital on time. I was called back and prepped for surgery and within an hour my husband was once again by my side. I don’t know what I would do without him. We signed all of the necessary forms and once again kissed each other goodbye as they wheeled my hospital bed to the operating room. Before I fell asleep under anesthesia I thought “these are some really nice nurses, I like them!” I woke up freezing and itching again. I don’t like that! Drugs? Oh yes nurse, once again I will take what you have! I spent a long time in recovery although I don’t remember it all. My husband recalls the time precisely; each minute to be exact. I love him so! Once I was in my hospital room I began receiving visitors. My emotions were all over the place and I just wanted to go home.

 

Finally the day arrived that I could go home. Although I have good days and bad days, mostly I am sore and tired. I know this too shall pass. I am still just a few weeks out from my last surgery and understand all things take time. Through all of this I have actively been taking back my life and now I am more than ready to get back to my life!

People tell me I am strong and brave, but I like to think of myself as determined. If I have to endure pain and hardship through this, then so be it. I found strength and I can now be a stronger advocate and educator because of it.

Resources

Lynch Syndrome International
– Support For Those With Lynch Syndrome

Genetics Home Reference
– Understanding Genetic Conditions

Myriad.com
– Testing For Hereditary Cancer

National Society of Genetic Counselors
– Find a Genetic Counselor

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