TERMINAL CANCER FROM A FAMILY SISTER’S PERSPECTIVE

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

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Laurel A. Porter

August 2, 2020 4:26 am

(My sister and I were about a year apart. She passed from cancer four years ago.) June 20, 1963 – May 3, 2016 I think I must’ve been somewhere in around the second grade; so Sis would’ve been in third. I was sitting in class and a teacher came in to get me. She held my hand and walked me down the hallway. She said they were taking Karene to the hospital in the ambulance and she had asked them if I could go with her. She had been in gym class playing softball. While she was waiting in line for her turn to bat, someone had swung at the ball and the bat flew out of her hands. Clunked Sis pretty good on the forehead. May Third, 2016 : I wish… Read more »

August 2, 2020 4:02 pm

Samantha, I’ve made all these posts about the loss of MY sister and I never once said I was sorry for YOUR loss and what YOU were going through. Please know that I am so sorry. I think of course, a brother would miss his brother; but, there’s just something special about that sister connection. Maybe its that female energy and that we tend to really FEEL stuff. I send you blessings and peace. (And I’m not really a bad person. I think I just got really caught up in my own feelings and they really snow-balled on me. My better half pointed out that I was really taking a lot of my anxiety medication and that I was crying a lot. Not an excuse though. So please accept my sincere sympathy… Read more »

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Samantha Leboeuf-founder/daily wisdom words, LLC

August 2, 2020 10:50 am

Laurel, this option to upload a photo should be available since you said you joined. We are posting it in the wrong place. You can leave comments under the post but if you want to upload a picture, with your comment you need to post on the Community Poetry page. You can access this through “community corner”.

August 2, 2020 2:10 pm

Reply to Samantha Leboeuf-founder/daily wisdom words, LLC

OK-got it

August 2, 2020 3:26 pm

I still can’t get it. I get a message about the firewall and administrator and a couple other things. Maybe it doesn’t work because this is an office laptop – am I somehow blocked? (Frankly, tho’, I’ve done a lot of none company stuff on here) , Or I checked my receipt for DWW and its posted the 28th – maybe there’s like a lag time of some sort? Or, most likely I’m completely inept when it comes to computer stuff. It was just really a cute picture to me because she’s so little.

August 2, 2020 10:34 am

Epitaph for my Sis
(My Heart in Pieces)

I cannot possibly find a way past this day
This mind-numbing,
Heart-wrenching,
Grief-stricken day.
I can only hope there isn’t one.
To have to wake tomorrow . . .
And after that . . .
And again . . . after that . . .
To feel this bad
. . . No words can say . . .

I am not certain of anything in this world.
I do not know if there is a God, or if there isn’t one.
All I know for sure . . .
Is this one truth :
I will never stop crying for the loss of you.

(copyright 4/20)
One Spirit

August 2, 2020 2:52 pm

Reply to Laurel A. Porter

You CAN WRITE POETRY!!! Those words are beautiful, together❤️

August 2, 2020 3:28 pm

Thank you. Really . . .

July 30, 2020 4:51 pm

(my sis dead from cancer at 52) Haunted Devastation May 4th, 2016 I have a voice mail “It’s Mike I just wanted to let You know Karene passed away yesterday” His voice breaks He begins to cry I am completely and utterly baffled I can’t imagine why he is so upset That my mother has passed away Wait . . . WAIT! . . .WAIT! . . . WAIT! . . .WAIT! . . . WAIT! . . . Karene is my SISTER ! My SISTER’S gone ! I guess my brain refused To hear it correctly at first It was just too much I don’t know how else To explain it For two days I did nothing But lie face down on the floor Sobbing uncontrollably No! No! No! I must’ve… Read more »

July 30, 2020 8:44 pm

Wow, Laurel. Thank you so much for sharing!! It in some way comforts me not that you’re in pain but you get it. They say there are five stages of grief ending with acceptance. Life is SHORT Laurel. I’m so very sorry for your loss. I care. I can’t believe our sisters both passed from the same thing. Please keep in touch with me. I’d love to have you join our website. Not a sales pitch. Free counseling we offer with membership and a mental jeLth advocate. Regardless reach out anytime. My sister was a singer and recorded songs. I listen to them and her voice is so beautiful. When she died she couldn’t speak. Much love to you. Don’t let go of the part of you that still believes there could… Read more »

August 2, 2020 7:50 am

Samantha, thank you so much for your gracious words. I admire the posts on here so much. I want to be able to write -not sure the words I’m looking for – lyrical, magical, something that creates a vision – but it doesn’t work for me. My friend Lila said “your poetry is right in your face” . And then I thought ‘then maybe its not even a poem anymore’. She said it IS poetry; and, for the first time you’re demanding to be heard. Please stay in touch also. (I giggled at the ‘sales pitch’ because I joined I think at the time I posted). Blessings and love and (this will sound so corny) but thank you for being as wonderful and inspiring as you are.

Karen Eggert

July 28, 2020 10:01 pm

Samantha, thank you for sharing your experience with everyone. I have lost a few family members to Cancer. Being a Hospice Nurse myself for the last 10 years, I unfortunately see families and patients at the their most sensitive time of life. Helping them navigate through their own terminal illness or a family members. I don’t think you did anything wrong. Jennifer took that journey her way, which should be commended. Please give yourself Grace Sam… you are a great Person and a great Sister. This was something you have never been through before. You did the best you knew how to. There is no instruction manual on this. Jennifer was blessed with a loving family and I have no doubt she knew how much you loved her. My childhood is full… Read more »

Samantha leboeuf

July 28, 2020 7:27 am

Join in after reading!!

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