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

13 thoughts on “TERMINAL CANCER FROM A FAMILY SISTER’S PERSPECTIVE”

  1. 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 and my apology. xoxo

    • 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.

  2. 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

  3. (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 someone had taken me by the hand, walked me down the hallway and said “Your sister wants you to go with her”.

  4. (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 repeated it
    ten thousand times
    I called my brother-in-law back
    He gives me the details
    Over the next several days
    My mind slowly begins to process
    What has happened
    Skin cancer
    Spread to the lymph nodes
    Died of brain cancer
    The last two days
    She couldn’t even blink her eyes
    (Really, God ?. . . like this wasn’t bad enough already?)
    She didn’t seek any treatment
    An holistic healer once
    But then she felt worse
    So, she didn’t go back
    There was no note addressed to me
    “Your sister wanted me to give you this . . .”
    Not a message – “Tell Laur . . .”
    She had never asked to see me
    She knew she was dying,
    but still . . .
    Nothing
    I never talked to her daughter
    After that
    She has no use for me
    Neither my mother
    I sit in the ship,
    Capsizing . . .
    All alone
    Not a fucking thing to cling to

    Sis and I had been so close
    Best friends
    We were all we had
    Somehow, we drifted apart
    Hadn’t talked for seven years in fact
    I laugh a bitter
    Little laugh to myself
    When I hear someone say
    “Always tell your family you love them”
    Well, it’s a little too late now, isn’t it?
    She probly didn’t know
    How much I loved her
    How highly I thought of her
    And all she had accomplished
    And she was always
    Just so damn funny
    We had hard lives
    Relationships are hard
    Fuck it . . .
    Staying alive is hard
    When you grew up like we did
    Parents didn’t want us
    Grandparents didn’t want us
    Dad long gone
    The hitting
    The yelling and screaming
    No shortage of rage in that house
    You never knew what was coming next
    To this day
    I don’t feel safe
    Something horrible will happen
    And, then,
    the inevitable . . .
    “Oh, there goes Laurel again,
    Another tailspin
    Jesus Christ,
    We’re so sick of her shit”
    I’ve hardened a little
    When I cry
    I sometimes only know
    When I wipe my hand
    across my cheek
    And I can feel the tears

    People say things like
    She didn’t get to be a grandmother
    To the twins
    She was such a good nurses aid
    She would talk about her patients
    She was worried about this or that
    She had to remember to tell somebody something
    Always caring
    (Oh, I just realized . . .
    that sounds like her name)
    Sweet and concerned
    I think these things too
    But I more think
    Was she scared when she
    Knew she was gonna die?
    People there to hold her hand, sure . . .
    But, when you go
    Aren’t you really alone anyway?
    Did she wonder
    what would happen after that?
    To this day, I wish I’d been there
    To hold her – wanted or not
    As she crossed over.
    And, where is she right now?
    Is there a God and a Heaven?
    I have had so many
    Struggles with religion
    I’m getting to the point
    Where I can almost believe
    That there is no God
    And we’ve all been
    Sold quite the bill of goods
    Santa Claus on a grand scale
    The Wizard of Oz
    When little Toto exposes him
    For the fraud that he is
    I have been through a lot
    I know bad things happen
    Good things are supposed to happen too
    Everybody’s got problems
    Time goes by
    But Karene’s gone . . .
    If there is a God
    This is an unforgivable act
    When I suggest it
    People seem put off
    . . … a little frightened
    (As I say it
    Even I am thinking “Yikes!”)
    Everyone so appalled
    “You can’t judge God!”
    Well, I am
    And I’m gonna
    And if there is a God
    I’m probly gonna find myself real sorry
    But realistically
    Even without my harsh judgments
    I know where I’m going
    I joke about it
    (Sure, it’s funny now . . .)
    “Straight to hell on the bullet train”
    “Don’t imagine they’ll let me make a stop at the liquor store”
    “Anybody got smokes?”
    I hold conversations in my head
    Just in case
    “Sure, I may have said some things
    You did some things
    Or more exactly
    You never did anything
    For anybody
    And hasn’t that really
    been my bitch all along?”

    I can’t dwell on it
    I hate the saying
    It is what it is
    But it IS what it is
    I could be in a whole lot of trouble
    Familiar territory, I know, but still . . .
    It just makes no sense to me
    Is Heaven like “Cheers”
    Everybody is sitting around
    The door opens
    Every one turns
    And somebody says “Oh, Uncle
    George died. Come on in.”
    (I hope it’s not one of
    Those joints that only serve beer and wine
    – That’s not gonna get me anywhere)
    And with all the space exploration
    Shouldn’t somebody have
    Stumbled upon something by now?
    “There’s pearly gates, and angels,
    But that old guy
    I saw from the window
    looks real crabby”

    I’ve done the best I could
    I have tried to follow blindly
    Like I’d always been taught
    I just can’t
    I want it to make sense
    I NEED it to make sense
    When you lose a pet or a sister
    That’s when you find out
    What real pain is
    You might think you already know
    Just wait . . .
    You have no fucking idea . . .

    Can’t somebody please
    Just tell me where she is
    Even if you have to
    lie to me
    Tell me she’s not alone
    That she has Panda
    And Pokey and Bearsie
    And all her animals
    And our father
    Has sobbed out
    A hundred apologies

    If you see her
    Can you tell her
    I miss her
    I love her
    And I’m sorry
    I’m just so very very sorry

    (Copyright 4/20)

    • 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 be something out there. Samantha.
      303-332-5607

      • 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.

  5. 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 of memories of You and Jennifer and your whole family!! Jennifer always called me Kear Bear!! I Love you Samantha and am here if you need my ear.
    Karen

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