Saturday, February 9, 2013

Melanoma=Fear

These last two weeks have been  particularly hard. I don’t need to analyze why. I know why. Two weeks ago a young Melanoma warrior was sent home on Hospice care. I’ve meet Briana several times. She and Jillian shared the same doctor. There were times when we would bump into each other at  U of M. Briana is a sweet, loving young woman, with a smile that lightens any room. When I heard the news  Briana was going home, it threw me back to those weeks when Jillian was home on Hospice. This is not an easy time for the family, and it  saddened me deeply.


As a caregiver, we have a job to do. We make those last week’s/months as comfortable as we can. It’s as if you are on autopilot. Every moment is filled up caring for that loved one. Making meals and serving them, administering any medications still needed. Making sure the loved one is comfortable. Helping with brushing their teeth, taking a bath. Dealing with nurses that come in once a week along with social workers making sure that we, the caretakers are doing okay. Changing bed linen, moving your loved one from one position to the next to avoid bed sores….hugs, rubs, talks…..Looking back on those last weeks, Jillian was such a gracious patient, never a complaint. It was an honor for me to have had the opportunity to care for her.

After Jillian died that Saturday morning six weeks ago, her husband Steve and I were crying, arms wrapped around Jillian, and each other. He looked up at me and said, “You did good”.  I replied, “WE did good”. And we did.  We made a great team, Steve and I. I know that I have absolutely no regrets. Not one. I’m so thankful for that.

Now Briana’s family is going through something very similar. And early this morning I found out that yet another young woman, Jennifer, who has a husband and a young son, has been given the news, “there is nothing more we can do”.  Jennifer has been fighting melanoma with such tenacity. She has been an inspiration and a joy to anyone who has had the pleasure of “knowing” her. A very big part of the melanoma community, along with Briana.

This brings me to my main topic. FEAR. I want to acknowledge those who live with fear.

The melanoma community is a very tight knit group. There are several support groups available depending on what your personal situation is. You could be the one battling melanoma, a caregiver, a mom, or finally, perhaps you’ve transitioned into the grieving group. Whatever the circumstance may be, these people stick together and support one another. And they FEEL. They hurt deeply when someone they’ve cheered on, compared notes with, been encouraged by, hears those dreaded words.

And then, the reality hits. This could be me. This just happened to my loved one.  Or, why am I so lucky that this isn’t happening to me? Why are the treatments working for me, and not for those women? This could be my daughter, or my husband, or my wife. Fear.

Living with melanoma, if it has progressed, means scans every three-four weeks depending on the treatment. Fear. You have about one good week during that time where your heart doesn’t skip a beat each day thinking about the looming scan appointment. Some call it Scanxiety.

Fear- as you are sitting in the Dr’s waiting room, waiting for your name to be called to go over the results. Your knees are so weak, you can barely walk without stumbling. Racing heart, sweaty palms, shaky hands, dry mouth.

Fear- as the Dr walks into the room. You try and read his face. Good news, or bad news?  Your heart is beating so loudly, everyone must hear it.

Even living with Melanoma when it hasn’t progressed can mean fear. Because you’re constantly aware that one renegade cancer cell can travel and invade the lungs, liver and brain. And these fears are real. It happens. I read a post from a friend Becca last night where she writes, “Having Melanoma means buying a two year planner and wondering if you'll be around to use the whole thing”.


Melanoma=Fear

I’m not sure you can sugar coat that. Oh, we learn to live with it, we find ways to live in spite of it. But if anyone thinks it doesn’t take great strength and courage to try overcome that fear,  and make a normal life once that cancer card has been dealt, is kidding themselves. These warriors are fighting for their lives every single day. If they aren’t waging a physical battle with melanoma, you can bet they are in a constant mental battle with the beast. And they do it with spirit, grace, and courage

So, if you know of anyone dealing with melanoma, or any cancer for that matter, look into their eyes and tell them how proud you are of their fight. Many of these warriors fight in silence. That kind word, that hug might just make their day, and lessen some of their fear.

For the young readers of mine- please do yourself a favor and stay out of tanning beds. Use sunblock, cover up.  Do it for yourself, for your family, boyfriend, girlfriend. Do it for anyone who loves and cares about you. Melanoma is not anything to mess with. It’s deadly. And please believe me, it isn’t pretty.  Don’t get yourself into the situation when you repeat Jillian’s words, “I wish I could turn back time”.


For Briana, and Jennifer, I love you both so much. I’m inspired by you. I will continue to pray for you as you continue on your personal Melanoma Journey.

Peace~

14 comments:

  1. You are loved and you, Steve and your family are in my many prayers.

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  2. My husband was dx as a 2b. We feel so fortunate for that at this point as we know it could be worse. I have become consumed with educating myself and others. You are such and inspiration and wonderful Mom. Amazing post!!

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  3. My heart is broken. I am praying for Briana and Jennifer and all of the warriors fighting. <3

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  4. Thank you for writing this, Susan. I NEEDED to read it. After the news about Jennifer, Julie, and another loved one of mine, I am really having a hard time battling the fear. Then there is the guilt. Oh, the guilt...Thank you for writing the words I'm not strong enough to write.

    I have enjoyed seeing your pictures with Melissa and Briana. What a beautiful group of women. My thoughts and prayers are with her family during this time. I am heartbroken at the news about Jennifer. What a woman she is...She has most definitely inspired our group.

    Again, thank you for sharing this.

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  5. thanks for posting you are an inspiration! Our little world is so small there are millions of people going through some kinda of pain, suffering, and fear every day that we have no clue about...thanks for making me aware of how deadly melanoma is and to spread the word in my small world! Continued prayers to you Jillians mom.

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  6. Mama Bear, my heart hurts for you, Jillian's husband, Jonathan, other Jillian's siblings of which I do not know their names. Even though, I do not know you and your family personally I pray for you all daily. I am so sad and angry with Melanoma!!!! I feel so sad and breaks for them but I continue to pray for Briana and Jennifer and their families as well as other warriors that have either have heard the words we are sorry there is nothing more we can do or for those who have entered into hospice care within our melanoma community. My heart aches for them:( Mama Bear I thank you for sharing your difficult details of Jillian's last days and hours from a caregiver's perspective with the world it had to be disheartening and hard to write. I pray that God will continue to give you peace, strength, and grace for each day:) You are truly a child of God and are using your writing gift and passionate melanoma mission for God's glory to raise awareness, encourage, inspire, and share your reason for your hope for each day with the world. I would love to FaceTime or Skype with you because you are such an inspiration to me as well as the rest of the world:) I pray that God will richly bless you daily:) Blessings and hugs to you and your family, Donna Piunt administrator of The Cancer SPOT Facebook page.

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  7. Susan, I just found your blog through Chelsea at Adventuures with my Enemy, Melanoma. My Father died on January 21st, 2 days shy of 6 months since he was diagnosed with Stage IV Melanoma. I often wondered what was going through his mind when we sat in the Doctor's office or when we got results back. I can't imagine the anxiety he must have felt, because I was so anxious waiting to hear results.

    He spent a few good months back at work, trying to live his normal life before the Melanoma spread to his brain. I could see the Fear in my Mom, who was such an amazing strong caregiver, during the couple weeks before the brain scan he was declining and I think she was scared to admit it and scared of what that would mean for the future.

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  8. Sue..THANK YOU THANK YOU!! I have been thinking about blogging for this same issue FEAR. I went to church service 2weeks ago and he taught on fear. He said fear = false evidence appearing real. But as I am in the clenches of this disease fear is real to me because its not false evidence. I am st4. I do have brain mets. Lung mets. I am afraid of dying. But what I must do is realize that fear is a spirit and god is a spirit and god is much greater than fear. I must also realize that were ALL not promised tomorrow but be comforted that those who have gone on before us are there waiting for our entry. Kinda like a baby being born. My heart aches for the families who are going through these hard times and I find myself thinking about what ifs a lot. Thank you again Sue and know you too are in my prayers.

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  9. Sue, you have to stop making me cry. I am so proud of how you have handled all of this. I can't thank you enough for sharing your thoughts & educating all of us, in sharing what it's like from the caregiver's view. Thank you!

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  10. My deepest sympathies on the loss of your beautiful daughter. Your blog is brave and full of such love. I am a mom of young adult daughters, but I am the one who has melanoma. I have been miraculously NED (no evidence of disease) for 5 years from stage IV. When I hear of a young person passing from this disease, I have tremendous survival guilt....I have lived a full life, why have I been gifted all this extra time?
    My daughters want me to move forward , make plans for my future even though they understand the facts about my prognosis, but it is hard. Thank you... in the depths of your grief, for reaching out to all melanoma patients and having compassion for the mental pressure involved, as well. Thank you for sharing your daughter's journey and your inspiring mother love.

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  11. My deepest sympathy on the death of your beautiful, courageous daughter. What a wonderful family you made. I use the word "death" and not "loss" as, when my daughter dies from Melanoma almost 5 years ago, I felt angry when people used the "loss" word. She wasn't lost, I knew where she was. Loss indicated to me I had somehow mislaid her, not cared enough, not tried hard enough for her. She was 13 when the Melanoma first struck, and 15 when she died. You write of the fear, of how tight knit the melanoma groups are, and you are so terrible correct. The support my husband and I had from our family was nothing compared to the support and strength we got from the Melanoma Forum, here in England, and from other patients and their families. I feel everything happens in our lives for a reason, I know Katie, my beautiful daughter was placed here on Earth to teach us all to value each other, cherish every moment and she gave us the strength to carry on after she left us, I hope Jillian gives you that strength for the coming months and years ahead; and reading your posts, I feel she will. God Bless you, and your lovely family. Alison
    http://www.katie-taylor.co.uk/

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  12. Good morning Mama Bear! Yes, this was a good replay. Hope you guys will get some sunshine and warmth this weekend. I went to Katie Taylor's site the other day and it is such a reminder of how short life can be. You continue to be such an inspiration to all of us!
    Love you,
    Susan Hines

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    1. Thank you, Susan. Life is short, yes. Learning from Jillian on what it means to "Stand".

      Love you too!

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  13. Susan what a wonderful topic FEAR. My heart goes out to those two families. Remembering the day we heard those words. Tina like your girl showed no signs of fear, although I often thought she must be full of it. First time I saw it was when they said, there's nothing more we can do its time to go home with hospice. I actually rode in the ambulance with her because she was so scared about now what. I sang her kids songs all the way to help lighten the ride for her and help her to smile. Fear how will my daughter say goodbye to her little girl as she prepares for heaven. Fear was in me for Tina's little one to have to be raised with out her loving mom. Fear now home not in Tina. She found peace in God's grace and never looked back. She went to heaven without "FEAR" just peace. I also feel it was my privilege that Tina allowed me to care for her those last few months. I felt than and still do it was honor to stand by her day and night and go 18 hours a day and never be tried. All God's grace, given to the sick and also to the caregivers. We are praying that Tina's Place may if even for one week take away "Fear" in these Melanoma Warriors. Hugs

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