They say that writing helps in dealing with what is going on with your life. I hope that by putting my emotions into words I can in some way help myself and others when dealing with a traumatic event in one’s life.
As the title of this blog states I am living through and past cancer. For many of you who follow my blog know me as an artist and naturist and I write and blog about body positivity.
I will discuss this issue here as well, as my body has gone through many changes after my surgery both in weight loss as well as the scars. The weight, I have to regain and the scars, either physically or emotionally will heal over time.
Before I get to that let me tell you about how this all began.
Seven months ago in mid-July I had what I thought was a canker on my tongue. Now I have had many canker’s or mouth ulcers inside my mouth as a kid and young adult and they went away after rinsing my mouth with warm salt water. This bugger was another thing altogether. I bought a canker medication and after a week of using it nothing was changing.
I went to see my doctor and he prescribed me a stronger oral paste medication. After I had gone through two prescriptions my sore was getting bigger. At this point my doctor referred me to an ENT (Ear and Throat) specialist.
My appointment was not until October 26th so I continued to go about my business as normally as possible. I went back to work and went on vacation to Saratoga Springs NY with my husband John (we had domestic partnership papers done in 2001 so we always considered ourselves as married).
It was clear to me that during our vacation and not long after our return that my condition was getting worse. I was finding it more and more difficult to eat and my speech was getting slurred.
The pain was increasingly growing daily and even though I was nervous about seeing the ENT specialist I couldn’t wait to get this resolved. I must admit that when my appointment finally came around I was more nervous than I had ever been before.
The specialist looked over my condition and immediately went to his computer and made a call to get a biopsy done. He told me in no uncertain terms that he thought it could be cancerous and therefore scheduled a biopsy within the week.
I saw my GP on Friday the 28th of October who suggested I take an indeterminate amount of leave from work. I saw my supervisor and co-worker and they both agreed that it was the best thing for me as they knew the pain and stress I was going through awaiting my upcoming biopsy and subsequent result. Through my company I am able to get Short Term Disability that doesn’t affect my financial situation while away from work.
The biopsy was probably the single most painful thing I have ever gone through (at this point). The specialist who performed it also confirmed before getting the results that it was cancer known as Squamous Cell Carcinoma. Thankfully it was stage 2 and treatable. But the treatment was not going to be a cakewalk.
I never expected that the following week I would get my admittance in the hospital on Sunday November 20th and I was to be operated on the Monday. They weren’t wasting any time.
As the days approached my admittance at the hospital my diet consisted mainly of meal replacement drinks and milkshakes with protein powder. This diet wreaked havoc on my weight. I went from 176 pounds in May to 154 pounds when I was admitted.
A week before I was admitted at the hospital John proposed to me on Saturday November 12th. I accepted and told him after 22 years together it took him long enough! He wanted to make sure that if we were married he would have legal rights while I was in the hospital.
On Monday November 14th we went to the Vital Statistics office to pick up our marriage license. The only drawback was we would have to be on a waiting list of a month to get a civil ceremony at city hall. We would have to hire a justice of the peace to perform a private ceremony. We were hoping to be married either Friday or Saturday.
That night I went online to find a justice of the peace in our area. In sifting through the vast list of names (who knew there were so many?) I came across one that seemed familiar to me. I emailed her and sure enough I knew her as the former president of the art group I am a member of.
She was more than happy to accommodate whichever date we wanted. John and I couldn’t believe our luck. By Wednesday we had exchanged emails regarding what we wanted the ceremony to be. When John contacted her about how she wanted her fee to be paid she said to consider it her gift to us. We both started to cry. This was just the beginning of our emotions getting the best of us.
Our dear friends Cathy and Paul offered us their home to have our ceremony and we had John’s sister and brother-in-law as witnesses as well as my close friends Terry and Kathy. I had my sister Francine in Montreal on Skype as well to witness. It was a simple ceremony but for us it was perfect. A beautiful day surrounded by wonderful friends and family. Followed by a nice meal and a nice squash and pear soup prepared just for me.
We did not have a honeymoon to speak of as Saturday was our only day to ourselves before going to the hospital on Sunday.
I had to prepare for being admitted and of course had to shave in preparation for the surgery. Now, I had not been without some form of beard since my twenties so seeing me without one was quite a change. So off came the beard and hair from my legs. My leg was going to be used to replace my tongue.
Sunday arrived too soon and we had some friends come over to the hospital to wish me well before the surgery. The doctor who would oversee the operation came by and talked us through the procedure and what to expect afterwards. Cue the tears again.
Five surgeons and twelve hours later the operation was successful. I was told later on that I had a difficult time getting out of sedation in ICU. John had to make sure that I kept breathing as I was on a respiratory machine.
When I finally awoke the first thing that I remember thinking is “thank you”. My second life was just beginning.
I was attached to everything imaginable. A feeding tube through the nose and drainage tubes on both sides. It was not a pretty picture.
They cut a huge scar from my right ear to my chin where they had to break my jaw and removed a tooth and then replace my jaw with titanium plate. The trach was on for a week and made it difficult to speak.
My left leg that was used to replace my tongue and has a huge 25 cm (10 in) scar that is just now healing and will likely stay with me forever.
Thankfully, I had a private room and John slept next to me on a cot. He stayed 11 nights of my 14 day stay as he went back to the house to check on things and shower. I am grateful that all of this was covered through our health care system in Canada with help as well from my health plan at work.
During those 14 days I lost 14 pounds. I went in at 154 which is a far cry from my 176 pounds that I weighed in the spring.
I was able to get around (with all my attachments) within the first few days and as the tubes and monitors were slowly being removed I was well enough to paint at my bed. I have to give credit to the amazing nursing staff that was so kind and caring during the entire process. They definitely need better pay for all that they do.
John and I spent our evenings watching Netflix on my phone and were in bed by 10:00 each night after the nurse had given me my blood thinner for the evening.
By the last day, I had been eating without the feeding tube and the doctor released me. I couldn’t wait to get home!
One of my friends was kind enough to drive us home. The feeling was almost surreal sitting in our living room that first day back.
Just as I was starting the healing process, my first appointment with the oncologist brought everything crashing down around us. I was feeling better and being told the worst case scenario of what the radiation would do, we went home disheartened.
We got through Christmas and waited to hear when the radiation treatments would begin. I had my appointment with the radiologist on January 3rd who explained the process of the radiation. He also told me that the pathology report came back with no indication that the cancer had spread. The initial tumor was 5 cms (2 in) and they removed 8 cms (3.25 in) so no chemo therapy was required!
I would have a mask made so that the radiation would precisely go where it should every time. The mask was done the following week and took 15 minutes to form my face and then another 15 minutes to dry while I was in the waiting room to try it back on for the scan.
I finally started to eat some solid foods again and had to gain some weight before any treatment started. I was able to add three pounds since I left the hospital.
My first treatment of 35 started on January 18th. The first three days went well and had the weekend off which was a relief. It was a long time since I’ve been off work that we could actually look forward to a weekend. We had lost track of the days.
I have now gone through 8 treatments and I am starting to feel the effects of the radiation. My mouth is dryer and my tongue is tingly. I have to rinse my mouth often with salt and baking soda in warm water and use special toothpaste with chloride to help keep my teeth as healthy as possible through the process.
John does not drive and thus far I have been able to drive myself to and from my appointments. We are too close to the city (1/2 hour) that are not eligible to stay in the hospital home care. Our friends Kathy and Terry are kind enough to offer their basement apartment to live during the final weeks of treatment and drive us to and from my appointments if I need to.
I have to eat as much as I can and basically nothing is off limits. John has been putting on a brave face through all of this and cooks things that he hopes I can eat. He makes a lot of puréed soups which are delicious.
I was weighed on Thursday and my weight is currently at 145.5 pounds. I hope I can continue gaining the weight.
I must continue to keep my spirits up as much as possible as dwelling on the negative will not help me heal. I try to avoid watching the news and concentrate on me and having John’s support is something I appreciate so much. Thankfully, I also have my art to keep my mind occupied and creative.
Yes we have our moments where we will be short with each other. This is normal and with any couple going through cancer, be prepared for the changes that will take place. Physical scars heal. Emotional scars take more time. Patience, understanding and knowing when to give each other space is important.
I have a great cancer team looking after me and I will be followed by them at least 5 years after my final treatment on March 7th.
This is a new chapter in my life and I am grateful for what I have and friends and family who support me through it all.
I look forward in getting the body I had before any of this started. My curves were mine and accept that they made me who I was. Non naturists struggle with body acceptance. They think themselves too skinny or too fat to be seen naked. All bodies are beautiful, inside and out.
Be aware of what your body is telling you. If you feel something is off, don’t hesitate to speak to your doctor. I know as men, we tend to keep things to ourselves and too embarrassed to talk about personal issues. Remember, early detection is the best solution.
I hope my story can help others who have or are struggling with health issues.