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Living with Stage IV

SamanthaWexlerby Samantha Wexler, Stage IV Cancer Survivor

 

A cancer diagnosis is scary and disorienting at any age, but a diagnosis of an advanced inoperable cancer at age 33 is completely surreal. I did all the right things:  I did not drink, I exercised, I was vegetarian, I never smoked and still I was facing what seemed like the Mount Everest of crazy news. The first thing my husband did after we were told about what I now call my MOAS (mother of a secret) was to get me to watch a stand up comedy show by Russell Peters.  I am not even a big comedy fan but somehow it seemed to fit in that moment where nothing seemed real anymore.

Now, when people think about a stage IV cancer they usually think about some poor soul who is moments away from death in a hospital bed hooked up to dozens of machines and a morphine drip to help ease the pain that they would most certainly be experiencing. Stage IV cancer is the ugly cousin of the cancer world. To people with cancers that were caught earlier we are their biggest nightmare come true, the angels of death come to get them. It is sad to think that we might get written off because of a number.  Stage III is not nearly as scary sounding as stage IV, perhaps because there is no stage V. Stage IV and themes like getting your affairs in order or preparing for death are almost always synonymous. What about the people with stage IV like myself, like Kris Carr, who are not ready to think about those things?  What about the people who choose to and are lucky enough to defy the odds and live?

The reality for a lot of people with stage IVcancer (including myself) is that we live, we don’t take no for an answer and we don’t hesitate to take full advantage of every moment of every day.  Death, although omnipresent, is not something that I like to dwell upon.  We will all die someday, that is a reality. The best we can do is live each day that we are given as the gift that it is.  A gift to see, learn, experience and thrive. Cancer has taught me a lot – a lot about myself, what I want to do with my life, the person I want to be and showed me a strength inside that I never knew  I had.

After my 2009 diagnosis of a rare cancer called GIST (gastrointestinal stromal tumour) which I have in a rare location (duodenum) with a rare wildtype mutation, I decided to go back to university, after having been out of school for ten years, to study art history.  This is something that I talked about doing the whole time I was out of school but had put it off for the “future.” The thing is, the future is now.  So often things are put off and dreams are forgotten because they are put off for the future. I am now in my final year of my bachelor’s degree and applying to my masters, I have worked my way up to being a straight A student (something new for me), and I write for an online arts and culture magazine.  I may not be healthy “on paper” but life is good; I choose to be happy and not dwell on things that may or may not happen.

And I am not the only one.  Here in Montreal, we have an art therapy group that is specific to young adults with stage IV cancer. During our bi-monthly meetings the conversations usually include dating advice, movies and art shows that we have seen and want to recommend, some medical stuff; rarely do we ever talk about the issue of dying or getting our affairs in order. We as a group are too busy living, loving, thriving, travelling, working, and going to school to think about the possibility of death. Death can come to anyone at any time. However there does need to be a safe place for people who want to talk about preparing for that possibility, even if other people are not there mentally or spiritually.  It needs to be demystified and become an open topic where people feel comfortable and safe expressing their feelings.

Recently I was at the first ever retreat for people with “incurable”cancer and it was amazing to see how we all just cut through the preliminary “getting to know you” stuff and act as if we had all known each other for years. There is no time for pettiness and I think that makes our relationships that much deeper and more genuine from the start. This type of retreat had never taken place before, it was only when there were two separately expressed needs for this type of event that people took notice and made it happen.  People with stage IV or incurable cancer are the ones that seemingly have the most to lose and yet we are the ones that are currently making the most waves because we need to know that we are supported and that we are not alone and forgotten. We are the ones that are creating our own groups and expressing the need for retreats and get togethers; a need that is being heard all through the cancer community. When you think about people with stage IV or incurable cancer, it’s pretty amazing that we are the pioneers of such events and support groups.

 

 

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13 Responses to Living with Stage IV

  1. Intan Nur Syeefa says:

    you are one of the most amazing person in the whole world. I am a survivor too, I just recently completed my chemotherapy for stage 3 Hodgkin’s Lymphoma. I’m currently doing my postgrad studies and trying my best to regain my strength after those 8 months of trauma. Reading this article of yours is giving me such a great encouragement. Thank you. May God bless you, and may we all stay healthy as long as we can.

    • Samantha Wexler says:

      Intan Nur Syeefa,
      I am glad that my words encourage you. I think it is amazing you are doing your post grad studies!! I wish you loads of good health and good luck with your studies 🙂

  2. Lee Majewski says:

    Dear Samantha,
    Thanks so much for writing this article. I was delighted to see your empowerment and your zeal for life. I believe that voices like yours are extremely important to shift the stigma around cancer in general and stage IV in particular. Please stay vocal as we need every word possible to shift public awareness and educate people as much as possible.
    Thank you again and my best wishes to you.
    Lee Majewski (www.kdham.com/cancer)

    • Samantha Wexler says:

      Hi Lee,

      I completely agree that the stigma needs to shift and that the people need to know that while “cancer” is still a scary word that eve with stage IV people can and do still live full lives. I am grateful every single day for my treatment that allows me to be not only here but to feel well (for the most part) and to be able to travel, go to school and live, really live.

      Thank you for giving me the opportunity to be able to be a voice helping raise awareness,
      Sincerely,
      Samantha (Sam)

  3. Pat Wetzel says:

    Samantha,

    A great article. There is no rhyme or reason to who gets cancer. But we do get to choose how we react. To you, for choosing to LIVE!

    Pat Wetzel (www.anticancerclub.com)

    • Samantha Wexler says:

      Hi Pat Wetzel 🙂

      Indeed there is no rhyme or reason to it all. Just like life in general, it is chaotic, messy and wonderful and beautiful all at the same time.

      I wish you the best,
      Sam

  4. Christine says:

    Hi Samantha, so great to hear how well you are doing. I too have stage IV incurable cancer, and I am living life to the fullest! It’s been 4 years since my diagnosis and I am going strong!!! Although I have chemo options to prolong my life I opted instead to prolong my life through exercise, healthy food choices and a positive attitude. I accepted as you have, that we will all die one day. My husband and I jus moved into our new home after renting for 4 years! I was ecstatic to move out the home that I thought I would die in….you are right, life is meant to be embraced and to keep living. I wrote an article about my experience that I would love to share with you. Please e-mail me directly so that I can learn more about your support group. I’d love to connect with you as I don’t know any other stage IV thriver! Best blessings and may the joy of your spirit send hope to all those who are facing a similar journey. Christine, Calgary AB

    • Samantha Wexler says:

      Hi Christine,

      I am so happy for you that you were able to buy a house! So exciting! I hope to be able to buy a house one day with my husband 🙂
      I would love to read your article, I can not see your email address, can you please email it to me at sami.fae@gmail.com. Check out cancerfightclub.com there are a lot of resources for young adults who have been affected by cancer in any way, it is an organization in which I have been active in a couple of different capacities including blogger and participant.

      Sending all the best and I look forward to being in touch 🙂
      Sam

  5. Miriam Sultan says:

    Sam,
    Thank you for sharing a part of you with the rest of the world. You are strong and wise beyond your years. Congratulations on the completion of your Bachelors degree! What a victory. May you go from strength to strength!
    All My Love!

    • Samantha Wexler says:

      My dearest Miriam,

      I was so inspired by your courage to step out of the proverbial closet with your story and strength that I knew it was time that I share my story as well. People need to know that there is hope even when things seem dark. We definitely both need to celebrate our accomplishments together 🙂

      Love you very much sweets,
      Sam

  6. Bekki says:

    Hi, I am working on being happy, I was angry n scared n worried what will my 3 boys do with out me. Then I felt bad because my kids n family had to be stressed as much as I am. But I think I’m now understanding that yes each moment I get with them is just the greatest

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  8. debbie says:

    Hi Samantha,

    I can attest to the fact that you are a beautiful, strong, driven woman. Congratualtions on your article, it is beautifully written and gives people living cancer hope, and determination to fight for a better life, and a strong message to others on how ones life should be lived and nothing should ever be taken for granted.

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