November Update Series: Reflections on the “slow goodbye”

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Thus far in this update, I’ve purposefully avoided much beyond my observations. I wanted to present things somewhat flatly and get through that first.

However, I have to include here, now, that the TOTAL truth contains this part, too: Beyond the words that I am saying, and behind the day-to-day existence I am painting… is a constant lump in our throats, and a tear in our eyes, and a hole in our hearts.

Previous updates from Vanessa and then us too have been more robust, with adventures and musings and Vanessa explaining how she is feelings and reporting on complicated interactions and stories showing her lively personality and intelligent view of the world. Writing this update, I was struck by how different it was – somewhat just a list of observations, symptoms, and my guesses at what she is feeling or why she is doing things.

I can only see Vanessa from the outside, and observe what I notice, and try to do what seems to be helping her. I can’t feel what Vanessa is feeling, and see life the way she is seeing it for herself. I can’t know exactly how this is for her, and while that’s the usual human existence…. she also can’t really articulate it to tell us. I HATE THAT. I have asked her about these projects she’s compelled to busy herself with most recently, and she says they do make her feel happy in the moment and there isn’t something else she’d rather be doing – so that’s at least comforting when they seem so random and obsessive and consuming.

I still talk to Vanessa all the time about how she is feeling, asking her questions and gently probing how deep we can go, and she answers them happily and honestly and simply each time… but since it seems hard for her to even figure out how (or if) she is feeling, much less express it well, they are short conversations and we can’t explore in much depth. I ache thinking about the possibility of Vanessa feeling lost in there, and just hoping that when I ask her how she is feeling and she says “Good, I’m doing ok”, that she really truly is. Sometimes she says she is fine, and sometimes she says fine BUT – but she feels stupid, but she feels brain dead, but she feels confused. Those “buts” kill me.

I do think that she is generally content in any given moment, and feels loved and cared for.  So that is the biggest thing that brings me comfort, and we all strive to continue making sure this is the case for her as best as we can, and can tell. We give her lots of love, and patience, and hugs, and companionship, and conversation that seems to meet her where she is, and then HOPE beyond HOPE that it is enough to accompany her through this.

It’s impossibly hard to see a person so… reduced. This disease is removing so many facets of her, all the lovely unique things that make her “Vanessa”, just stripping them away. It’s magnifying some of her V traits, removing others all together, and also changing parts of what she has always been. It’s reducing her life to a non-sequential seeming loop of immediate needs and wants, and removing the big picture from her view, as well as all the little things that are her.

I feel a strong kinship with those who have watched or are watching a loved one changed and seized by a mental disorder or condition. The biggest revelation I’m learning and living is that death by long drawn out illness, especially that has brain involvement, is in many ways a slow goodbye. Each day V’s symptoms progress and another part of her is gone. It’s death by a thousand little deaths. Without usually noticing day by day, something will hit me like, Wow, I don’t think ___ is ever going to happen again: having a really natural deep peer conversation, V babysitting my kids by herself, telling her a funny joke and having her get it immediately and laugh with me, seeing her get really enthusiastic, enjoying her meticulous planning for some grand event.

We are loving and cherishing each and every moment we get with V, and the days do contain much joy and connection and smiles and laughter. Yet, in some ways, Vanessa is already gone. We are having to mourn the “old” Vanessa at the same time we are caregiving and loving the “now” Vanessa, still our sister/daughter/wife/friend and a person so dear to us, but also a person whom we now also don’t always recognize. I had expected the sadness that this time would bring, but I have been caught off guard about losing her before losing her, if that makes sense. I am angry that cancer is not only cutting her life short, but taking her, in pieces here and there, already. I miss her now, actively, constantly, even as her and I may be talking together. I want to go home from her house and call Vanessa 1.0 and tell her how hard this is and have her talk me through it in her smart, kind, caring way.

I have mentioned Vanessa 1.0 and Vanessa X.0 in my updates… this software versioning sort of thing is the best way I’ve come across to explain how this feels, this same person that feels like different people at times. Vanessa 1.0 is original, real, true Vanessa. Vanessa now is a later version – still her, but different, changed by this horrible disease, not at her soul, but in vital body and brain ways. Since the changes are now coming fast (relative to the first stable 30 years or so), each one seems like a new version of her, released rapid-fire. Right when you figure out, say, Vanessa 4.0 (she is sick of pink, doesn’t want to go out a lot, and wants to work on some particular craft), then it changes to Vanessa 5.0 (who again loves pink, wants to do everything, and no longer is into said craft).

Also, as Vanessa’s focus has shrunk, so has ours as her caregivers. It’s sooo challenging to continue being a functioning person in the world while doing this. As we focus on accompanying her through this, some areas of life seem so unimportant, and others we just literally have no time to do or care about right now.

I also find myself seeing and hearing everything differently – when someone may be rude or insensitive or ungrateful or pretentious in my daily life, I often am so disappointed and baffled at how everyone can’t see the world as I am, in that moment – and then have to remember that this current burden is not seen or shared by everyone I meet. We are all at different places in our journeys. I know this, but it also sure is hard to see when people are not nice to one another, or seem to be placing focus on the things am not feeling are very important right now. I try to come back and center into the right perspective that’s not too stuck in my own head, and acknowledging our differences.

While now is hard times, some of the day to day moments are not actually hard to do – but just are weird! Like when Vanessa was labeling our leftovers from lunch, and rather than just marking with whomever’s initial, she instead meticulously wrote out each item on the sandwich inside. It was no big deal to help her remember/figure out what each meal was, and I was happy to help her with this… But outwardly while I assisted calmly and acted like this is normal, inside my brain was straining against the bizarreness. It’s fascinating, when it doesn’t feel so sad.

I’ve also thought a lot about how what seems so strange, really is only slightly off center from what I’d call “normal.” I  often see a glimmer of myself or others in her behavior – I also like to lay out a project I’m working on with organized stations, Mom cuts all the tags out of her shirts because they drive her crazy against her skin, we all get focused on some things with a one track mind. Sure, Vanessa is doing some of these things to the extreme now, but it’s fascinating to realize that none of us are really all that far off from where she is. Our brains, faced with the same sort of trauma, could easily pick similar sorts of things to focus on just a bit too much, actions to get obsessed with, verbal and cognitive functions to drop entirely. What a usually-unappreciated gift that we are all generally able to count on our brain and body maintaining sense, order, logic, comprehension and sanity in the midst of so much constant stimulus and signal and noise.

Every day seems to bring a little less emotion for V. Don’t get me wrong, Vanessa is still feeling emotions, and of many types! But other than the frustrated moments (which can get really, really mad), everything else is pretty tempered. She’s not walking around moping, and also not getting really excited about much. Her primary feeling seems to be a fairly even keel “busy”.

It’s a blessing that she is not seeming very scared or worried or upset, but as I say that I also cringe a little. Because the joy of being alive comes in feeling and experiencing everything – the highs and the lows alike. It’s NOT a blessing to have your brain be dulled at the edges, with no way to be less confused, and having to struggle to comprehend and contribute, missing half or more of your full range of emotions. So I’m happy that the brain mets have interfered with her having many negative feelings right now, but also sad we can’t explore whatever deep feelings together, and come out the other side richer and bonded deeper.

The “big things” cancer has taken from her (kids, normal life, growing old) are no longer in her daily conscious thoughts… She has very infrequent glimmers of “I don’t want to die” or “I don’t want to leave you” or “I’m scared of what’s next”, but that’s not really up top in her head at any given time, and that’s not usually what she is thinking about, acting on, or making decisions based on. You don’t realize how many decisions and choices and experiences are made based on a emotional, deeper thought or feeling – until they are not.

And yet, through all the continual loss and the looming despair… Vanessa remains. Fiercely in love with her nephews, finding us all presents and writing sweet notes, wanting to be with us all, hoping for the best, grasping to hold on to order where she can control it. Creating beautiful patterns in the world, as she has always loved to do. Even in those few moments at her most impatient, mad, or mean, she almost always follows it up with “I’m sorry. I don’t like when I’m like that. I love you.” – because, truly, SHE DOES.

Vanessa and her namesake nephew, Leo V. I am so sad to think that he won’t likely have any memories of her, so I take a million pictures of them together.

We thank you for, and ask that you please continue, your wonderful support of our family! Thank you for all the things sent to let Vanessa know you are thinking of her – the cards, the “art of the day”, the letters, the flowers, the kroger cards, the food, the money, the pictures, the stories. Thank you also for when you meet Vanessa where she is in her head, making her feel good and happy and giving her just what she needs. (For example, commenting how pretty she looks when she posts a facebook picture of an ensemble she is particularly proud of!) You probably don’t realize how important these small moments and connections are for V, but they can be very big in her world. And please know that even if Vanessa doesn’t always see or really comprehend everything sent to her, we as her family are buoyed by your support in each word and message.

If you are a praying/meditating/karma type, please focus on Vanessa’s continued lack of pain, and for her to find better sleep each night, and for us all to fill our pockets with strength and patience and energy for the days ahead. Do keep sending love and well wishes to Vanessa and letting her know you think of her and that she is not alone, even though none of us can join her in her head for her view. We all look out at the same world, and it brightens her to know how she is part of yours.

Running and thinking of V!

And, please…. Hug your family and friends and tell them you love them. Have deep conversations, the ones you always want to have but maybe don’t. Reawaken your passion, your desire for meaning, your insistence that life be BIG and worth something. Take risks, be bold AND be gentle, remember your mortality, look inward, and reach out. Take the pledge, and then LIVE IT. Take care of your health, take care of your family, be a part of a community, be silly, laugh a lot, cry when you need to, and have hope always. Remember that no matter how bad things seem, there is always much to be thankful for.

Lastly, as always, please, please, PLEASE:

Obey the luminaries – LIVE SINCERELY!!!!!!!




This is part 6 of a series of update posts for November. (You can start here to read them in order.) This was the last one! If there is any Vanessa update or question I haven’t covered, just ask. Other than that, I am hereby going to take a much-needed little break from blogging. :P Thanks for sticking with me over this past week!

We have more to send your way soon, too – Christina has some reflections she is currently writing about, and we’ve asked Billy to even guest write us some posts, so he’s working on sharing his husband/Billy perspective as well.


  1. Carrie Schneider says:

    Beautifully written, Jessica. I was choking up while reading it!! I truly admire the strength of each and every one of you.

    My mom and I will continue praying for all of you through this rough time.

  2. Zann Carter says:

    These updates have been such a gift.
    They are about Vanessa, but they will resonate for anyone that has cared for a loved one with a brain disease (as you said above.) For me, it touches my experience with my mother and Alzheimer’s dementia. Reading tonight reminded me of the anguished wail my mother would make once in awhile, “I don’t feel like myself anymore!” until one day, she no longer remembered herself. And sometimes Mom 1.0 would come through for just a few seconds and it would be stunning and heartwarming and heartbreaking all at once.
    And I know exactly what you meant when you wrote about wanting to call Vanessa 1.0….
    In any case, these updates are a gift because they mirror the experience of others and it is healing to see one’s experience mirrored and articulated so well.

    Thank you so much for taking the time to write these posts – I hope that it has been a healing act for you as well.
    I will hold in my heart all those things you wish for Vanessa.
    with love to your family,

  3. Diana Haye says:

    You have written about V so beautifully, poignantly. Your struggles/observations/love are heartfelt and deeply appreciated. Living in the moment and expressing your love for another is so important. My mother, a concentration camp survivor, always used to say “Never go to bed angry, always hug and kiss those you love as though you may not see them again and be grateful.”
    I wish you courage for the coming days, weeks, months. And may your well be filled with certainty that you have done right by V.

  4. Candace Minster says:

    I don’t even know what to say, other than I think about all of you all of the time. Carrying you in my heart, sending so much love.

  5. Jen McCloskey says:

    Each of your blog posts has left such an ache in my heart. I am so sad for what cancer has stolen from v and her friends and family. Your gift with words to express this journey is amazing. I can feel the emotion and love and pain and blust-sister awesomeness jumping off the screen and gripping me from reading your words. Thinking and praying for all if you!

  6. Nicole says:

    This is beautiful. I watched my best friend’s mother – who was like a mother to me – die of stage IV breast cancer 11 years ago. I can relate to experiencing this slow goodbye you’re writing about.

    Thanks you for sharing such an intimate journey with us. We all have something to learn from your trials and tribulations. Vanessa will have left behind a legacy, something that can truly make a difference. :) That’s something to be proud of.

  7. Cary says:

    Holding you in my heart today and always, Vanessa and family. This post is heart-breaking and beautiful. Thank you for helping us make sense of this I fathomable suffering and loss as it unfolds. Vanessa, I live sincerely to honor you and will endeavor to show by example what showing up for life looks like. We have so much to be grateful for…thank you for generously sharing your exquisite grief as V slips away from us.

    Sending love from the west. xoxo

  8. Lisa Bonseigneur says:

    So beautifully written. There are no words to express the emotions I felt while reading this. V and Co. I strive everyday to live sincerely in your honor. I will forever carry a little part of you in my heart. <3

  9. lisa says:

    We are walking thru terminal glioblastoma with my husbands and I best friend of over thirty years. This was so spot on in the description. Steve is still there, but not the steve with emotions. He sklmiles because he knows he should but there is no joy. The other side of that coin though is that he does not seem to be experiencing fear. My heart aches for his wife and teenage kids. He is alive still but not the man he was. We r praying for him to make it thru the holidays. I am trying to live sincerely every day and will take my picture with steve and our sign.

  10. Rich Yaeger says:

    This may sound pretty strange, but I think Vanessa is truly blessed. She has two caring, amazing and wonderful sisters. a loving husband, great parents, and a God who continues to show His love in various, perhaps mysterious ways.

  11. Amos Niehaus says:

    Thank you for writing these posts. Our hearts and prayers go out to Billy and Vanessa, and also to you and your family.

  12. Pattie Noel says:

    Thank you so much for these updates. I am so thankful to have met Vanessa this year through PRG. She truly is a blessing to my life as I am a fellow sojourner on this road. Having stage 4 bc as well I can and do pray for her knowing what this battle is like. Although we all experience different things we have a kinship, a sisterhood that we didn’t ask for but yet here it is and we must deal with it. She inspires many and yes, she is so blessed with a loving family taking wonderful care of her. This is a very tough road but its also filled with Hope, with Peace, with Joy.
    So may the God of all comfort, bless you with comfort and strength and reveal Himself to each of you sharing His Hope, Joy and Peace through Jesus Christ His Son. His hope of eternal life in Heaven is real! Take comfort in knowing this life isn’t where we end; we’ll have eternity in a perfect place with perfect bodies with no more goodbyes when we trust Jesus.
    My love and prayers are with you.

  13. Kelly Kitchen says:

    Jessica, I admire your strength and courage to share this personal and heartbreaking story your family is enduring. As someone very close to my sister, my heart fills with pain as I read your posts. As someone who went to high school with Vanessa, never real close, but I was always drawn to her, I always admired her…so sweet, so beautiful, so pure. My heart truly breaks for her. All of this has opened up my mind to embrace day to day life and live in the moment. Vanessa and your family remain in my prayers. With love, Kelly

  14. Angela Maynard says:

    I have just finished all of Vanessa’s updates and Jess THANK YOU for your honesty, your strength, your emotions and your love for sister. Vanessa in so many ways you are an inspiration to those of us who face life with no battle like your own to take a moment and realize how lucky we are and to stop complaining of meaningless things that we can change. You are a sparkle that brightens so many lives and a firecracker that makes everyone smile. I pray for your continued journey that it takes you on a path of more laughter, joy, smiles, love and less ache. Billy as always you are what defines a real husband and I pray for you that God gives you continued love and strength. Living Sincerely for Vanessa!!!

  15. Sara says:

    Vanessa and family,
    I went to college with V and we went to church together often. I am one of three girls, and these posts from Jessica and Christina really touch my heart. I just wanted to let you know that I think about your family every day, and ALL of you are in my heart and prayers.

  16. Mary Pat Clark says:

    I just read the last two entries in the series and am truly amazed as to the depth of your writing. They are really amazing to read and at the same time they are very sad to read. I remember when as little girls, you guys would come out to our house for a picnic and would be dressed to the nines. After a little time to get used to everyone, you guys would trot off and play. But Vanessa seemed less likley to venture far from your Mom and Dad. I could be wrong in my memory. It has been a long time. Then I was at all three of your weddings. I really don’t know where I am going with all these ancedotes, but they are what is in my mind as I read your piece. I do pray for your whole family all the time and especially for Vanessa and her husband, Billy. I can’t imagine what it feels like to you and Christina to be so close to your sister and know her time is limited. When my brother died, yes I miss him still and wonder what our family would be like if he had married and had kids of his own. My kids would actually have cousins and Christmases would be a whole lot different. But God must have some other grand plan that we don’t know much about at this point. I will continue to pray for all of you that you and your family will be able to accept God’s plan and have faith enough to know that in the end everything will be OK. God bless all of you!!!

  17. Kelly Clark says:

    Jessica thank you SO MUCH for all the updates. Your writing is INCREDIBLE!! Much love and prayers to Vanessa and the whole family.Vanessa you are truly AMAZING and you are in my thoughts ALWAYS!

  18. Melissa Grove says:

    This is the best blog. I am friends with Sue and Dick and knew Billy in grade school. Your blog is the perfect description of a Cancer Caregiver that I have ever read. Thank you it is very healing. I helped care for my mother and realize now the challenges that I have been through. You are all strong and amazing do exactly what you gut tells you and that is Living Sincerely. God Bless you all and thank you!! I pray for your family each day and think of you often. Melissa Grove

  19. linda herms says:

    hi jessica, i have no words,just deep sadness knowing cancer sucks,deep regret for not making the most of every day God gives me, and just the assurance that all of you are always in my mind and in my prayers. God is using all of you in a profound way. I spoke to your mom thursday. If i can do ANYTHING for your families or children during this holiday season please call me

  20. Lisa Cohen says:

    Oh Jessica,
    Thank you for sharing through your beautiful writing the tragic journey that Vanessa is travelling. I am so sad for all of you but also wish I had understood like you do while watching my Mother and Sister being overwhelmed by cancer. We lose them slowly and painfully, a bit every time.
    I admire you and all your family and especially Billy for your love and support and understanding of Vanessa.
    I pray that Vanessa will not suffer pain, physical or emotional.praying for you all and sending love and hugs.

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