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 I 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.

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.

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:

 

 

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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.