What I thought I’d be saying in this update

Vanessa had a brain scan recently. I had an update post for it already written in my head before she even went in for the MRI. The update I “wrote” while on the bus and laying in bed at night talked about the recent fun things Vanessa has been up to in the past few months, like:

~Elephant in yo’ face, camera!… Getting love from Gapper… Reds game fun… Vanessa and Billy as the proud godparents of one adorable little guy. :)

…but then also had a health update that would go something like this:

While these days are much the same as the previous months, with continued project-doing and picture-taking, Vanessa has also had a lot of changes lately {I’d detail changes here like slowing thoughts, increased forgetfulness, pulling inward, slumping over more, physical changes, etc} that we’ve noticed. Her recent brain scan came back, and it was fascinating to see the brain changes that are behind the ever-progressing decline of her health. I am aware of things every day that are the outward indicators of what’s going on in there, but to be able to visually SEE what is changing my sister, was fascinating and illuminating. Visuals help me understand, so I’m grateful to be able to see and show you the actual progress in Vanessa’s brain mets, to help illustrate the cause of what we are seeing day to day.

This update text would be nice, but the best part would be where I then would have inserted into the blog post the before (from July 2012)/after (from April 2013) MRI pictures of her brain. Vanessa and Billy usually get a CD post-scan, that actually includes all the images from the scan; it’s pretty amazing to be able to stare in the “face” the cancer cells that are behind this body takeover of my sister. I’m hardly a radiologist that can understand what everything I’m seeing really is, but I know where the doc pointed out on her last scan where one of the bigger cancer masses was, so I figured I would find that image “slice”, and do a nifty then/now compare that would look something like this:

( NOTE: This is just a mock-up to demonstrate the progression I expected to see from then to now. Nothing here is accurately scaled or placed, there was more than 1 tumor on the first scan, and the real tumors were not shaped like thought bubbles or stars or arrows. :P)

From my mocked up “after” pic, you can see what I expected to see on the scans from the 9 months that had passed – lots more cancer, just everywhere. That, while horrible and sad, would be a reason for what I was seeing in Vanessa’s behavior. And maybe, just maybe, I could even use the increase as some sort of gauge to answer the burning question (that no one really can answer, I know!) – how much time is left? Even realizing I would likely be wrong, it still felt better to have a guess, a number of months or something, based on real data, no matter how faulty my subsequent calculation on that data then was…  “OK, so cancer was in approximately 5% of her brain before, and now it’s in 30%, and it’s been 9 months, so at that rate, etc etc etc.” TOTALLY BOGUS, but believe me I was going to try to find a way to calculate something. :P

The real update

So, here’s what really happened. (The rest of my words in this post are going to be generally health-update related, as I have a lot to say around that, but I’ll try to still cover what V has been up to in the pictures scattered throughout!)

Vanessa went in for her scan, and unlike last July when she had a really hard time laying still and being confined that long, she did great. Her results came back, and her oncologist called to explain the images we also could view on her CD take-home-party-favor. The update was that the brain tumors…  were stable. Hadn’t grown at all. In fact, might even be a little smaller, it’s hard to tell exactly? Here is (my cartoon version of) the real old vs. new pic of my sister’s brain:

(NOTE: Once more in case you were speed-reading and missed it above: This is just a mock-up to demonstrate the progression from then to now. Nothing here is accurately scaled or placed, there was more than 1 single tumor on both scans, and the real tumors were not shaped like thought bubbles. :P)

Mind melt

Billy and I happened to hear this scan result together, with the phone on speaker at V&B’s house while I was there working. At that time, Billy asked the doctor good, practical questions like How is that even possible (Answer: the radiation she had last year, about 9 months ago when they found the brain mets, was wildly successful at halting its further growth), while I sat there unable to even speak as my brain raced with thoughts like:

• I am happy Vanessa’s brain mets had responded so well to the treatment, holy cow!
• I am sad that the year-ish of time gained thus far was after such big changes to her personality and functioning levels.
• I wish with every ounce of my being that she could have been gifted this “extra” time before or without the brain mets that so adversely affected her and changed everything. In fact it almost feels cruel to have all this time, now.
• If more brain mets are not what is causing the mental declines, the seeming-neurological symptoms, etc…  what is?
• I wonder what this meant for how long this period of things will be-  Could Vanessa live for many months, even a year plus, yet, like this?
• I feel horrible guilt that part of my first reaction was also that I don’t want to do this for more years, that this “limbo” of everything on hold and juggling so many hats and not being able to just “be”, is hard and tiring.
• And at the same time, I feel like I do want this for as long as possible, because I will never be ready for V to die, and my heart skipped a beat (at the same time it sank, somehow) to think I might still get more time than I thought… more time to hear my sister’s voice, and have her tell me I’m an awesome mom, and reminisce about our many road trips to IKEA, and make plans together for the future of our sisterly business.

Once the scan results phone call was over, Billy and I sat in silence for a beat, and then I rapid-fire spat out questions and thoughts while Billy nodded in disbelief too…  But we realized then, and again as I repeated the conversation and realization several times over with Christina and Mom, this fact: While nothing had actually changed (this scan was just informational all along, no intention to act on it in anyway), EVERYTHING had somehow changed.

Switching from a sprint to a marathon

Rightly so, we had approached this time of hospice from the beginning with gusto and determination. Sure, we hoped for lots of time left with Vanessa, but we also realistically knew that cancer left untreated does and will grow. V is lifetime maxed out on radiation to her brain, so that last full brain radiation she got around the time of the previous brain scan was the last attack from our end to the brain mets. We crossed our fingers that for once Vanessa would be on the good end of a statistic, surpassing the average hospice duration of whatever it even is in this sort of situation, but we also weren’t going to risk having any regrets by not acting as if we had less time than that average, too. We had taken this development in Vanessa’s health head on, making big changes in our work schedules and home schedules and life, because of just how tremendously important it is to us to accompany Vanessa on this part of her journey as completely and lovingly as possible. We moved mountains with our bare hands and have worn ourselves to the quick, because rising to the occasion of this crisis was the only natural option to consider.

What changed with this scan result, then, is simply our perception of this part of the whole story. Rather than a sprint to the finish that takes us through many iterations of V changes in quick succession with little time left to think, leaving us breathless and exhausted at the finish line to then begin our post-Vanessa processing and grieving and finding the “new normal”… we’ve instead learned that we must re-frame this time in our life as, more accurately, a marathon. Nothing changes in our hope for Vanessa to have many more good days, or our desire to do everything we can for and with her! But just like a runner taking off for 26 miles versus a 5k, we have to plan to be in this for a longer haul, and hit a slower pace we can sustain for longer.

The thing with that mental flip is that it wasn’t a decision we made when we started training before our race. We’re not just starting a marathon fresh now.  We instead took off at breakneck speed for a relay race of sprints, when Vanessa went into hospice care, and it’s like now coming in to the end of that race at top speed with muscles aching to rest, to find the announcer screaming at us in the bullhorn: “There’s been a change to the race course! The entire relay team will now continue on to run a full marathon! Can’t stop now! Go! Go! Go!”  We are tired. Exhausted. And yet must keep going.

In my mind, I’ve shifted from assuming that Vanessa will not see 2014, to relinquish control or even understanding of any of this, and admit/accept I have no idea how long she has yet. In having my wishful thinking of “answers” be totally busted into even more questions, it’s actually still helped. Coming to this realization means we can make more sustainable changes to our home/work lives, take care of our caregiving selves better, make sure we’re not taking care of Vanessa at the expense of neglecting others who are also important to us, getting ourselves breaks from our caregiving and even our fellow caregivers. This current pace we’re running at is not sustainable, and we have to adjust.

Over many thoughts and discussions over this past month, I have been relieved of the guilt I felt in those first moments, over not wanting to do this for a long time longer…  because I realized that it’s not that I don’t want to care for and love and hang out with Vanessa for much longer, but just that I can’t sustain the frantic way I’ve been handling things for much longer. We have to purposefully plan for the long haul, now, and it’s ok to want the breakneck short term plan to be over. And that doesn’t mean I want VANESSA to be over. :P (Seems obvious, but the guilt at thinking that in the first place kept me from seeing the big picture for a good while.) I’ve realized I can acknowledge the blessing of this well-responding brain that might bring the gift of more time for Vanessa, and treasure my sister happily as long as I can, while also acknowledging the challenges and hardships and needs of the rest of us at this time. They are all true.

Heartbreak of change

While that mind-shift we’ve all come to has been helpful, it has also been lodged in my brain as unavoidable constant pain. I will honestly tell you from a raw place in my being – I have mixed emotions thinking of more time with Vanessa, this Vanessa. I want it, and I’m grateful for it, but I also want MY Vanessa back, and now-Vanessa reminds me I’ll never get that. Changed-Vanessa, V9.0 or whatever version we are up to, somehow seemed heartbreaking plenty when I was expecting a year or less of the changes, but to realize that we could have a long duration with this new Vanessa, requires a different resolve to truly accept this situation and embrace it. Because if we aren’t constantly preparing for the end of this journey, focusing on the constant steady march in that direction, it opens up time and thought to really feel, understand and make the difficult push to accept how the brain-mets (steady as they seem to be!) have changed Vanessa. I guess it was easier to sort of gloss over in my head when it all seemed tied into the dying process, versus considering it a phase with its own duration, if that makes sense.

I explained it to a friend like this – I had this one sister for almost 3 decades, she was awesome, and we made a million amazing memories together that shaped my very being. Then it’s like she left, and my family went into mourning missing her while simultaneously adopting a new sister, one who was also awesome, in some sense mentally and physically disabled,  looking sort of like my old sister, and having all of my sister’s memories. So this new sister is kind of then the same person, but also sort of a totally different person that I have to get to know as almost a stranger: what her likes are, what she is capable of, what she enjoys doing, how she talks, how she acts, what she would want for a present, what she chooses to wear.

I love Vanessa fiercely just as she is now and I can only imagine how challenging it is to really have a disabled-from-the-start member of one’s family, or to adopt an adult into your family. In our case, since Vanessa hasn’t always been this way, there is the pain of having her been this other person capable of so much more and so important to my daily life as a peer, who is now changed into something else; another person, but not. I exert so much of my time and energy figuring her out, re-learning our relationship, or trying to guess what she is feeling or thinking, that I long for the days of a natural, easy, peer, best-friend time spent… the kind where you know exactly how your friend will react before they even do, can start saying 2 words and they pick up the story from there, and you can easily converse about life dreams and concerns and memories. I know Billy misses his wife who is his partner in crime and worked side-by-side on house projects and at family parties with him. It makes me sad that our connection to Vanessa is only available at such a shallower level now, but then again, when we are sitting on the couch side by side in silence, or working on our respective laptops, or talking about silly things and laughing…  if I close my eyes, for a second I can imagine it’s all normal and Vanessa 1.0 is back. I’m so grateful for those moments that feel like “the old days,” but they are brief flashes only, and can be painful reminders of what Vanessa has lost, and us through her.

I imagine that anyone who has had a loved one experience an accident, illness or mental health issue that changes their core self and capabilities, likely experiences this similar constant grieving of lost potential and past, while (hopefully) learning how to love the changed person in different yet the same ways, going forward. My heart breaks thinking of the families that have had to bravely adapt and thrive with permanently changed loved ones in their life for decades or more.

Amazing brain

I also had to readjust my perception of what is happening in Vanessa’s body, as I spend time with her and observe the various symptoms and changes. I AM NOT COMPLAINING, but the weird (awesome) fact that somehow her pain sensors have turned off, creates wonderful lack of pain for her, but also a mildly frustrating lack of her being able to feel or realize or understand or express what is happening in her body. That was one reason I was actually so excited for her to get the brain scan in the first place- because with her continued declining with things like memory and comprehension, I had not even purposely decided, but just assumed, that it simply must be that there were massive brain changes causing it… and the scan could tell me that in ways V can’t. I never had any proof or anything, but it seemed logical enough, so that felt true. In my head, I chalked every change or decline I saw up to that assumed brain tumor growth.

As we all know now, though, rather than proving and illustrating my guess, the scan disproved it. Her brain, as precious and miraculous as all of ours are, had been breached sometime a year or so ago, occupied by a cancer army splashing through the moat and busting down the castle door and causing irreparable harm in its damaging attack. However, the scan images showed her brain is valiantly fighting back, not able to totally kick the enemy out of the castle, but having corralled it into one room and barricaded the door.

And then I like to imagine that having taken care of that important task, it left some guards there with strict orders to shoot-to-kill any escapees… while the rest of her brain went to focus on more exciting tasks, like separating the M&Ms by color or creating “Live Sincerely” signs or buying endless presents for her beloved nephews. :)

So, again, nothing has actually changed in some real way, but I’ve had to readjust my own internal narration and explanation of the things I see in Vanessa each day. When I notice a new case of the hiccups, or catch in her breathing, or limping of her legs, instead of assuming it’s her brain (like I did before), or her body, or whatever, I try to just let it be what it is. Without the awareness of pain, things might be happening that usually cause pain or discomfort, or they might not be happening; minus the pain side effect, we don’t know one way or the other. Sometimes I speculate the cause of symptoms still (only human!), but I know I still could be wrong in any (every) given day. I’ve re-realized we’re back to (still at!) a point of not understanding why her health is going like it is…  but this is the current correct truth of the situation, anyway. It’s been rather sweet to think of that brain of V’s as amazing, again, instead of some faulty misfiring thing causing all her troubles. Bet you, like me, regularly take your own amazing brain for granted!

Why are her mental functions declining, if not from the massive overtaking of tumors in her brain that I had thought? Who knows. Maybe her body is failing, maybe there are “brain changes” other than tumors that don’t show up on an MRI. Maybe her body is fighting hard against cancer in other places of her body and that’s diverting brain power away. Maybe I’m imaging the mental sort of decline/changes and she’s been the same for months! My non-medical self can only guess, based on nothing at all concrete, but only what we can see from the outside.

What her BODY is telling us

What can we see? Beyond Vanessa’s brain, which we normally can’t see and just got a glimpse of on the recent scan, and beyond the lack of Vanessa being able to sense and communicate to us the changes within her body… there are still definitely body changes we can see these days. Vanessa’s lean/fall over seems more pronounced – she might be sitting, with her upper half almost horizontal falling over into her lap, without her realizing. The tumor bumps on her face have recently increased in size and part of her chin and lip are numb. There are bruises on her arms that either could be bruises from bumping them (she says of course they don’t hurt, and has no memory of any bumping!), or could be signs of a beginning-to-fail liver. Her ankles have swollen to a mushy, large size: although, again, she doesn’t feel it as uncomfortable or painful, we are having her elevate her legs to try to relieve the swelling. Vanessa’s right eye is increasingly swelling to a half-blink state, and is “leaking tears” as she said it, possibly from tumor growth there on her face. Tracy (Vanessa’s hospice nurse we adore) mentioned that with time this might impair her vision to where she could benefit from wearing a “pirate patch.”

So even without a scan to tell us, we know for sure that unlike the uneasy hold-steady in her brain, the tumors in her body are spreading and advancing.

A lesson and reminder

I will be honest – I think about “the end” more than a little, and wonder about the specifics of how it might or will play out in Vanessa’s body. Will her brain just shut down, or will her organs one by one start to fail, or some other combination? Of course, I’m also painfully aware that things I don’t even know about or consider could happen, or I could be totally wrong in what I imagine or think might happen. Even as we switch to marathon mode as the truth of her stable brain settles in, it’s also true that Vanessa could die this month if her body decline accelerates. Thinking of any of these scenarios just hurts my heart – because, dammit, they all end with my sister dead, and there is no way around the blunt horribleness of that reality.

The no-one-really-knows-the-duration part of this stage weighs on my mind a lot. When we are planning things in the future, or having a rough day, the unknown duration feels like an all-consuming weight. When it’s a good day, I can let it go and recognize that one day in the future I will look back on this time as better than whatever is going on then, and so I hope to not waste these days fretting over the unknowns.

Sometimes this all feels like knowing there is a huge, your-whole-degree-is-riding-on-it final exam coming up, BUT it’s a surprise pop quiz that could come any time, AND you have no idea what topic it will be on. I constantly feel like I should be DOING SOMETHING to prepare…  but what? I read a lot of books, some titles that some people might find depressing, but they bring me peace in feeling ever so slightly prepared. I read other people’s blogs, I google, I sit in silence, and think, a lot.

Someone wisely advised Christina (and she shared with me of course!) to not spend too much time thinking of how it will end, because you really can’t know or imagine that, and it’s fairly wasted effort. I try to remember that suggestion frequently, hoping to strike the right balance of “preparing” in my head to some extent, so I can face this unknown with strength when it comes, without wasting precious time or energy trying to imagine the unimaginable.

Beyond the huge questions of why in our lives, it’s human nature to want to know what and how and when when looking to our futures, but the truth is what is going to happen is what is going to happen, anyway, regardless of our worrying or not worrying. It’s a constant struggle, but I look to the pledge for guidance: “Accepting the reality that there are circumstances I cannot change”, it’s a conscious decision to put one foot in front of the other one in “bravely walking towards the unknowns of my future,” while keeping my head firmly focused on today to be “fully participating in the fleeting beauty of the present.” It’s really hard, but I’m doing my best.

The lesson in this recent change of mindset has been, for me, a reminder of something I already knew but is so easy to forget: We have no blueprint for our lives, any of us. There is no timetable, no program listing what will happen and in what order. Just as each instance of cancer is unique in its chemical makeup, so is each cancer death, or any death, a unique unfolding. There is no “standard sequence” or “timetable” or “progression of events” that Vanessa’s body is following and we can look to for timing. Accepting this goes a long way to feeling freedom and peace with the unknown.

Thank YOU

Thank you, friends and family and readers, for your support and presence as we walk on what has proven to be a very foggy road. That foggy visual feels so true, because while the fog means we are unable to see the path more than 2 feet in front of us (frustrating!), it also means that we can (should!) be amazingly aware and present in exactly the part of the path we are in, right now, to safely navigate to our destination.

This journey has created so many impossible and sad and sometimes conflicting hard thoughts and feelings, that at times (I’ll speak for us all when I say), it feels like our bodies will just rip open and the pain and stress and chaos will fly out in a burst of shiny red confetti, especially when we have no concept of how long this part of the journey will last. Thank you, all, for being there in those moments, with a butterfly net to gently catch all the pieces of our heart and hand them back to us with a hug and kind words. As we face a future where “the end is in sight” and yet not at all in sight, you will be even more important in sustaining us on this marathon.

We need your love and support and help, now more than ever. Know that we couldn’t have come this far without you, and are grateful for you each. Thank you for the friends and family you have spread our story to, in doing so adding more people cheering us on from the sidewalks as our marathon winds up and down huge hills. Each person who takes our pledge, who contributes an assignment to our project, who reads or who comments, enlarges the legacy of love that has emerged from the struggles of our family. Knowing that the world just might be made better through the trials of Vanessa and us who love her, helps to soothe the pain of our grief and loss and worry.

We are so blessed that Vanessa could and did start hospice care when she did- the whole process has been so helpful and supportive, and the people all so caring and friendly and kind. Billy has begun looking into some of the other programs hospice offers that we might get value and relief from, such as a volunteer coming over to spend an hour or so with V each week, and I was so humbled to realize these volunteers usually come from other families who have had loved ones go through hospice. To see people using the grief from losing their own loved one as a catalyst to help other families going through the same thing – it’s truly inspiring.

I suspect that for those local friends and family, we will be calling on you more in the coming weeks/months(/years? not pretending I know any more!), for company and presence and aid, while we slow our pace to ensure we can keep it up for as long as we are needed. Thank you so much, in advance, for sticking with us and being so giving of yourself from all that you have going on in your own world, too.

Thank you to our workplaces, who have been so accepting of alternate schedules and offering of flexibility that we weren’t realizing we would need for such a duration. In our mental adjustment to preparing for a marathon, we may make modifications to current schedules and approaches, but we are so grateful for your past and continued flexibility.

In the end, though, specifics aside, our plan remains the same as it has always been:

Making sure Vanessa feels how loved she is, every second of every day, in unconditional care, with deep gratitude for all that she has been in our lives, and all she teaches us still now. Spending and treasuring and seizing the time we have left with our sister/wife/daughter/friend, and thankful each day that she is not in pain. Counting our blessings when we can, crying when we need to, and keeping our eyes open for the lessons and beauty in her and our struggles.

And, most importantly in our forever plan is to honor Vanessa with the thing that would/does make her most happy: being the absolute best version of ourselves that we can be, never taking for granted a moment of this unfair, scary, hard, confusing, painful, fleeting, amazing, connecting, fun, wonderful, beautiful LIFE.