Where do we go from here?

I knew the second the doctor opened the door that the news was not good. I could see it in his eyes. That must be an incredibly horrible part of his job. He must have been dreading this conversation since the moment the imaging report came through. The tumours had grown and new lesions had appeared. The chemo was not working.

There is no proven path from this point on. With only 100 new cases of this type of Neuroendocrine cancer a year the first two lines of chemo, along with radiation is all they’ve figured out.

During our meeting he laid out three options, attempting to get into phase 1 clinical trials in Toronto, trying immunotherapy (which I don’t have a great profile for and it has a poor track record- ie hasn’t really worked in people with similar cancers and is very expensive), or stop all treatment and make the most of my time.

Through tears Justin asked what he would do if it were his wife. He said he’d choose the latter, and wouldn’t spend another minute getting poked, prodded, sitting in a waiting room. He said I have 3-4 good months left before the cancer really starts impacting me.

There is part of me that wants to do that. Off treatment I’m feeling relatively ok physically, and I question whether I really want to waste the time I have seeking more treatment that will potentially rob me of my vitality, waiting around for apt times, traveling to receive treatment? Is it really “giving up” if there isn’t a winning path forward? I don’t think it is. But I have too much to fight for. It’s an incredibly remote chance that the immunotherapy will buy me more time, and even less likely that clinical trials will do the trick but I have to try. I will not stop because my babies need their mama.

So we’re currently awaiting a few different things including a call for a biopsy of the liver tumour to see if the genetic composition has changed since my initial biopsy a year ago. This could open up clinical trials or help determine next best steps for our Hail Mary.

I always thought before my diagnosis that there was just a clear cut path you take. Your Doctor would just direct you. They would tell you what you should do each step of the way. So much of this journey has been left for us to pick a path. People who knew nothing about cancer a year ago, let alone an especially rare aggressive cancer that so few Drs even know about. I try to read medical journals and extrapolate info, but even before chemo brain (and mom brain!!) I wouldn’t have understood half of it! There is a reason I’m not a Doctor!!! At this point I’m thinking of pulling out a magic eight ball, because we really don’t know what the right choice is going forward.

The waiting is agony. Not knowing what path is the right one is agony. Not doing anything right now is agony. Cancer is fucking agony.

Some days, despite how horrifically sad this situation is, I feel somewhat at peace looking at my kids and feeling that my purpose in life was to bring them into this world. To create these hilarious, gorgeous, shiny little stars to radiate beauty and love to those around me. But sometimes I just feel angry that this beautiful life I’ve built will be cut so much shorter than everyone else’s. It’s a dark place to be, but when I see smokers living to 80+, or chronic drinkers living to a ripe old age I just feel like it’s so unfair. This whole thing is just not fucking fair. Not just to me, but my kids, Justin, my mom, and those close to me. Why me. But spending time on those thoughts is pointless and counter productive. I remind myself that I don’t have time or capacity for dark thoughts and do my best to focus on all I have to happy about.

After a sum-pump issue causing some flooding in our basement (luckily no real damage just stress and worry as we figured out what the issue was) and as I sit holding a puke bucket beside C where I’ve been since 3am, I am so grateful for today.


Thanks for those who got to the end of my long, cathartic post today. I so appreciate those who follow along and have an interest in our family. It really does bring us warmth knowing how many people out there care. As always, the messages and check ins and other acts of kindness are so appreciated. Thank you ❤️❤️

23 Comments Add yours

  1. Susan Dokis says:

    It’s not fucking fair!

    Like

  2. Anonymous says:

    So very sorry to read this. Praying for wisdom as you guys choose what’s best for you and hoping you get a miracle

    Like

    1. Anonymous says:

      Praying for a miracle for you Jolene every day ❤️

      Like

    2. Jenn (Edmison) Daniel says:

      Jolene, I am so incredibly sorry to hear this. I remember you as a little girl when Amy and I were so close. Your children have an inspiring mom to look up to. In fact, you are an inspiration to all moms. I can’t even begin to comprehend this decision you have to make when no path seems like the right path. I will be following your journey and wish love and time for you and your family. Xo

      Like

  3. Bev Bell says:

    How awful to have been given this diagnosis , it really sucks . So not fair . But I wanted to let you know I whispered a prayer or two for you today . I prayed that God would stand by your side – loving , protecting , and guiding you .
    Know that your in my heart and I whispered a prayer for you ❤️

    Like

  4. Rick Jankura says:

    Also very sorry to read this. Difficult to come up with any words other than it really is not fucking fair. You and your family certainly do not deserve this outcome and I admire your and Justin’s courage in the face of continuing adversity. You and your family continue to be in my thoughts and prayers. Let me know if there is anything at all Dianne and I can do to help.

    Like

  5. Anonymous says:

    ❤️❤️❤️

    Like

  6. Anonymous says:

    “Curse, bless, me now with your fierce tears, I pray.
    Do not go gentle into that good night.
    Rage, rage against the dying of the light”

    Fight the best fight you can for all those around you

    Like

  7. Nancy McIsaac says:

    Thank you for sharing so honestly Jolene. This really sucks, and by sharing with all of us, we can at least take some of the dark energy for you.

    Like

  8. Heather Schieren says:

    I’m still praying for a miracle. Thanks for all your updates and honesty, keeping us informed. Very inspired by your strength and courage.
    xoxox

    Like

  9. Anonymous says:

    Thank you for sharing; I have been thinking about all of you! We are praying for you and sending our love and support. Although we don’t live close and don’t see each other often, I always admire your adorable family and we are here for whatever you need, always 💜

    Like

  10. Mary says:

    Jolyene; I am a mother of three and I feel every word. I pray for you and your family. I continuously pray that God give you happiness, peace and support. It is a tough journey, but you and your family are courageous, strong and soooooo loved. 😘😘😘

    Like

  11. Susan deWaard says:

    It is heartbreaking that you and your family are in this situation… may your unquenchable love for your family carry you forward and help you fight on. Love to you all

    Like

  12. Shawn says:

    Jo …. Because I saw first hand Joanne’s fighting spirit, I know what it takes & can offer a reminder of how strong you are.

    Don’t fucking give up. If anyone can win this fight it’s you.

    Face your wrangle as Namajunas
    Pine the sea to return Aeneas
    Your toggle towards antiquity
    Provides clarity by your scrutiny

    Looking into your eyes, weakness beguiled.
    Spirit too strong to be wiled.
    You have the will to fight.
    Beauty and strength is your light.

    Like

  13. Jean and Norm Mulloy says:

    Our thoughts and prayers are with you all on this difficult road you travel.

    Like

  14. Kristi Washchuk says:

    My heart absolutely breaks for you and your family. You are so courageous and I so admire your strength and ability to focus on all you have to be happy about, even in these dark times. I am hoping and praying for a miracle. Keeping you all in my thoughts. ❤️

    Like

  15. Anonymous says:

    Hugs .

    Like

  16. Brian and Mary says:

    Hugs .

    Like

  17. Aunt Dot says:

    Fight, fight,fight Jolene. At least if you take the path of immunology you will know you have done all you can . I pray every day for healing for you and maybe God’s healing is through this path ! LET IT BE SO !!!

    Like

  18. Anonymous says:

    Thank you for sharing your feelings so honestly. I will continue to include you in my prayers. I understand the struggle to decide what path to take forward and pray that a treatment plan can be found to kick this beast’s butt. I can offer this advice: Once you make your choice, don’t look back or second guess your decision. Hugs.

    Like

  19. Anonymous says:

    So sorry to hear that the chemo is not effective. Praying for strength for you and your family as you make the difficult decision on the path to take.

    Like

  20. Anonymous says:

    Jolene and Justin words are hard to find. We have been following Jolene’s blog and talking to Duke and Jason. We think about you often remember you and your family in our prayers and we are sending the biggest hugs ever. John & Linda

    Like

  21. Anonymous says:

    I’ve been following your whole journey Jolene and praying for a miracle. You remind me every day how precious time is and to not sweat the small stuff❤️

    Like

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