Less than a month ago, I lost my little sister to terminal Head and Neck Carcinoma. It started just over one year ago, on her tongue as a canker sore. She had gone to the dentist as it was extremely painful. The dentist told Jenny that the canker sore looked a bit different than the typical canker sore so the dentist sent her to an Ear, Nose and Throat Specialist. Her specialist did a biopsy and told her it was cancer of the head and neck called, squamous cell carcinoma. He said he felt confident that she would be okay, and at this time her main concern was if the cancer would have any affect on her ability to sing. The specialist told her he would have to remove the portion of the tongue and margins to see if it had spread from her mouth. Oddly, she didn’t have the typical predispositions for this cancer. However, she did have a half brother who had had it, and fought it six years until it returned and he passed away from it.
When I first heard the news, she had recently met the love of her life, a connection she reconnected with from many years back. She lived in Venice, California at the time, and was pursuing her singing career, had finally raised two beautiful, amazing girls all by herself. What I did not know until down the road was the cancer, being typed was already at a stage 3b and at a stage four, it is almost always terminal. They had also taken a sample of lymph nodes and those came back with six lymph nodes positive for this kind of cancer. she had a wedding I had just been to, prior to this first surgery to the man of her dreams. They had a lot in common including playing music, and believed much in the same way. The first time I had met him was between the initial diagnosis and the first surgery which she had asked the doctor if she could put off as she was getting married in two months. He told her he saw NO issue with it. You must understand all the reading in the world is not the same as a doctor who you’ve already built a trust factor with telling you he thought that would be fine.
My little sister hated narcotics. I have a disease which at one point required me to be on so much of them she actually hated them. I felt when I saw her she was somehow different. One thing I forgot to mention is she went to six days of radiation treatment prior to her wedding and had to stop. after three treatments she could no longer eat or drink she was burnt so bad. She almost at this point gave up, but gained her nerve back during the time of the wedding and wanting to survive so badly. I mentioned the narcotics as I noticed when I took them, (she had no choice as the pain was unmanageable) I felt disconnected. She was on top of all details, (she was a very sharp girl) as usual, but just a little disconnected due to the narcotics. I think it was then she started to realize she might actually die from this. She had already dropped approximately 30 pounds as eating wasn’t enjoyable to her with the pain it caused. Just before I left, she said to me, “Sammy, wouldn’t it be sad if after all these years I finally meet the love of my life and I end up dying from this?”
I reassured her that would not happen but since the initial diagnosis, I had a sick feeling I could not pinpoint in my stomach. She at this point decided to completely focus on getting better. They ended up taking more of her tongue due to the pain level she continued experiencing and the news was not good. At this point, I would call and try to talk to her and she had a strong lisp. The treatments began. At this point she had a full team of experts working on her. She had made it clear she would NOT go on chemotherapy as a treatment option. One highly successful treatment was something called brachytherapy which was inserting small beads of radiation throughout the infected area. When the anesthesiologist put her under for her second tongue operation, he caused her to go into cardiac arrest due to the tracheotomy all patients have. I also, had gotten the nerve up to avoid how I felt and dig into her kind of cancer. It appeared based on the numbers she would eventually get it back as many patients do. My sister sat in an isolation chamber for four days alone. I never was there for these treatments. I live in Denver, and still have health issues. Also, I feel I was a coward not wanting to see her suffer.
Ideally, she would have gone from this radiation therapy straight to chemotherapy but chose not to do the chemotherapy portion. Quality of life was important to her, and I think with what she had already gone through it was just too much. When I flew out two weeks prior to her dying, she was so very thin it scared me. She also had little strength. There was a note on the refrigerator showing that her doctor’s first test results after the bracheotherapy and her tumors had shrunk. However, without the chemotherapy to follow, another NEW tumor was now growing rapidly in her jaw despite the radiation therapy. She even agreed at this point to the chemotherapy, but she wasn’t strong enough to take it at that point after losing so much weight and the wear and tear cancer puts our body through. She did everything she was capable of, but on June 27th, at 5:15pm I watched her take her last breath at her home in Jenner, California.
Hospice had stepped in as the doctors no longer could manage the pain, and I had barely unpacked when we were on another trip, this one to say goodbye. The days that have followed have been full of sobbing on my end, and guilt for what I did not do that I felt I should have. I wonder to this day if she will ever know how very much I loved her and so many other people, including her husband she was so happy with. In the end, you could see her big blue eyes filled with exhaustion from fighting a battle where the timing seemed off. I firmly believe, even if she was ever able to get to remission, she would have had the same result and it saddens me deeply to write this. I thought it would be good for those of us who have family members with terminal cancer to hear my thoughts and facts. Now that you’ve read this, what did we learn from it? I personally feel the doctors waited too long between surgeries, but then again she was underweight and also on a feeding tube. Sometimes, God calls us home like he did Jenny. Her beautiful blue eyes were the last thing I remember seeing the day she died. Please share your comments on a family member who you are dealing with who has terminal cancer or share your thoughts about my story. Do you see anything blatantly glaring we did wrong? Jenny always made her own decisions. All I know is now she is gone and my heart aches horribly. I know one day I will see her again. I just know a special soul filled with kindness and love could never die eternally. She was only 52 years old when she passed. She will always be with me in my heart and in my memories from childhood which I cherish to this day.
Samantha Leboeuf/Daily Wisdom Words