By Jessica Yaeger

Makeup does not always make you prettier (throwback picture time)

Vanessa has been working on scanning in a lot of pictures from our earlier pre-digital camera days.  She recently found this gem, and Billy showed me, and I had to share.

The year was 2000ish, and we had gotten one of those big makeup sets with tons of colors, for Christmas that year – and rather than use it for looking pretty, we spent an hour… doing THIS to ourselves:

J&V_Makeup

Yup. Those are paint-by-number blush boxes on Vanessa’s cheeks, if you were wondering!

Oh how I miss these everyday, silly, young moments with both my sisters as we grew up together. But am oh so thankful for the memories…  and the pictures! :)

Happy 2013!

We sincerely wish YOU a new year filled with love, laughter, hope, friendship, wisdom, health, discovery, joy and peace! Thank you so much for walking alongside us in 2012, and we are grateful to be able to travel onward together, wherever 2013 takes us.

Such a gift is each single day we wake up into – and it’s thrilling to realize just how much we can do with a whole year’s worth of days. Here’s to making the most of them, by living with purpose, determination and gratitude. :)

We hope you’ll continue to join us on our journey, as The Live Sincerely Project kicks off some new explorations and assignments in the coming days. Happy New Year to all!!!

New Years Resolution - Live Sincerely

November Update Series: Reflections on the “slow goodbye”

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.

November Update Series: Day to day

Other than projects, things day to day are very present in the moment, and we operate and figure it all out moment-to-moment. Vanessa seems to have gradually slowed down with socializing – she’ll still get to quite a few family parties and the odd event or two, but things are getting scheduled out in advance way less often, and some outings seem less desirable to attend, to her. We spend a lot of time just hanging out at her and Billy’s house (her working on projects, us helping if she’ll let us (she doesn’t always want help) or just hanging out the rest of us in a nearby room). Her other favorite past time is still her true love activity, shopping – which can potentially be dangerous! Although Billy has occasionally been known to suggest a shopping trip for the main purpose of wearing her out walking around a store for a few hours and hopefully helping her to sleep. :)

There is a fairly predictable set of patterns that have emerged in daily life, in general: If it has words, she will stop and read it aloud. If it is on sale, she will (want to/) buy it. If it moves or makes noise, it will startle her to say “Woah, what’s happening?” If it’s shiny or glittery or pink or sparkly, she will wear it (sometimes all at once). If it’s cardboard or plastic, she will recycle it. If it is paper, she will first (want to) shred it (so we have to act fast and intervene with some things!).

Bling! She arranged this ensemble for our homemade photo shoot for Cancer Fighting Princess that I mentioned before... and then wore it all day. :)

I also have used the following way to describe the singular focus she frequently gets locked into: You know when you don’t see a curb in the parking lot, and accidentally drive up onto it… and then you sit there, and no matter how hard you were to press the gas pedal down, or how quick you throw it in reverse, you are just STUCK. This is often V – she’s just spinning her wheels up on the curb, unable to mentally move forward or backward. And we either climb up and sit with her in the car, or band together to push her off the curb if we can.

Example of Vanessa spinning on her curb! She sat down and started looking at the drink menu, she ordered, and her drink came, as you can see. But she wasn't able to then stop and switch to the food menu, until she continued reading through all the pages of the drink menu. Then she finally (with some prodding from B and me), was able to start looking at the food menu.

Sometimes these stuck moments seem to have a purpose: With the drinks it seemed like she was checking to see if she could find strawberry flavor anywhere else in the book. So still a kind of random, slow, unimportant seeming task that Vanessa 1.0 wouldn’t have delayed ordering her food for, but a purpose all the same.

Other stuck moments are completely without a known-to-us purpose. I wouldn’t be surprised if V has a line of reason that makes sense in her head, though, that we just can’t see or realize or understand, or that she herself may have since forgotten.

Very helpful book provided by hospice - helped us realize our range of emotions is normal.

We’ve also recently, as a big family group and also in smaller combos, have had some chats with our nurse, social worker and chaplain from hospice, and their perspective has been very helpful. Everyone who works for hospice has been so nice – go figure, eh! ;) We’re already so grateful for their support, whether we need a quick medicine change for V, or advice on a new symptom, or caregiving suggestions, and I know they will be continually helpful as we go.

Sometimes, as V pulls inside a bit more, we pull together more, too. Christina and I often spend more time with Billy than Vanessa when at their house, as she works on various projects throughout the house. In the little bit of time Mom, Christina, Billy and I don’t spend with Vanessa or working, we are calling each other to confirm the plan for the next day, talking through our approaches to certain issues, seeing how the day went, etc.

These days, as hard as they are, still bring moments of joy. Laughing over old stories of our childhood (today we cracked up talking about how V’s room decor in the 90s cycled through pink ribbons, to sunflowers, to Americana flags, to blue and black…), sitting around as sisters, Billy high fiving Vanessa after she finds the right word.

This is Vanessa’s life, now, in hospice care at home with her family, dying of stage 4 breast cancer with mets to the brain.

 

 

~~~

This is part 5 of a series of update posts for November. (You can start here to read them in order.)

Tomorrow’s topic will be the last one: Reflections on the “slow goodbye”

November Update Series: Projects

If I had to sum up the days with Vanessa now with one word, it would be: PROJECTS. Oh, the projects. Most are organizational/cleaning or decorating in nature. They just spontaneously form, and are nothing Vanessa thinks out ahead of time, although many of them span days so she is waking up and right away continuing any longer project she was working on the day before. We can’t direct them, either, for the most part – we could bring some project we came up with and all the related stuff to do it, but V could take one look and be all “eh”. The ones that “stick” are mostly the ones that pop into her own head and take hold for whatever reason.

The decorating projects have mainly been hanging up a good number of framed pictures around the house, as well as many “Live Sincerely” signs and art that some of you may have sent her. I believe V & B may soon be clear out of wall space!

Decorating! Many handmade and beautifully sincere items given to Vanessa. I have to admit that the top left saying, which I have always loved, stabs me in the heart just a little now with the "cancer cannot suppress memories" part, as it is proving it very much can and is doing that now in V. The middle picture shows a framed gift V gave B back in their college days, and look at how young they look in that picture from the same time! :)

For the organizing and cleaning projects, while they are all-consuming for her and she works on them with singular determination and focus, the end goal or purpose is not always evident, even to Vanessa. Sometimes you can see where it’s coming from: for example, a recent project she undertook over 3 days (all day each day) involved cutting the tags out of each of the coats in the closet, marking each coat with sharpie with the size, and then meticulously applying clear scotch tape to each removed tag and trimming it to size. The task seems random and parts of it just were, but you can guess some possible motivation behind the underlying concept, such as wanting to get rid of an annoying tag against your skin, perhaps. The final project just then takes that potential motivation to the extreme, adding many many steps, in this case including sorting off the cut-off tags in size order, and laminating them for unclear purposes.

After she cut the tags off them, she marked all the coats with their size in sharpie. However, after cutting the tags off she often got confused and no longer knew what size a particular one was, so those she marked with a big ?. Then the bottom pics show the tags she cut out. The first picture is where she arranged them in a row, in order from XS - XL. The second picture shows the tape "lamination" that she applied and trimmed to be exact.

Other projects seem totally random: like the one involving finding and then lining up on the counter all the mugs/cups with lids – and then loosening each lid, just slightly. When I asked her (very benignly) what that action was helping with, she got silent for a moment, then said “I don’t know, it’s kind of crazy. {pause.} But, it’s all I can do right now, so, ok. {more loosening, no real concerns.}”

More frequently, though, she just feels generically driven in these daily created projects, and makes less self-aware comments such as “OK, I just need to keep making progress. I want to just wrap this up and get it done.”

Vanessa and Billy’s house is certainly the cleanest it’s ever been as a result of all the cleaning! Vanessa is organizing drawers, going through papers, and sorting piles. Everywhere, things are all very particularly arranged – V lines up all pens on a table with lids the same way, sorts candy by color and type, and all paper is shredded immediately after reading. Recycling things (cutting off any labels, flattening it out, sorting) and loading the dishwasher (she constantly is monitoring for dirty dishes anywhere in the house) are of a paramount importance to her day. Almost the second the last drop of your drink enters your mouth, Vanessa is asking you to hand her the cup so she can take it to the kitchen. ;)

Organization! Top left, counter clockwise: Beads sorted by color/type and lined up in rows within the compartments; hats stacked in big to little order; 2 mugs that Mom had to take her to Kroger immediately one day to buy in order to separately house the pens from the sharpies (all standing lids up); it's kind of hard to tell, but there the candy and food is all sorted by type and in individual baggies or green glass bowls, including the ramen noodle packs in a very decorative bowl; her shoes that make me happy because so nicely organized, but also make me sad because they are all flats and gym shoes and sandals now, and she was always SUCH a heels and strappy sandals kind of girl in healthier days.

 

 

~~~

This is part 4 of a series of update posts for November. (You can start here to read them in order.)

Tomorrow’s topic will be: Day to day

We’ll add one post a day for the next few days until we’ve covered everything, so please stay with us through them all!

November Update Series: Cognitive changes

Cognitively, there are many changes and advancements happening lately. Some listening/speaking/comprehending functions have simply left Vanessa. Sarcasm is now undetected by her, and merely is confusing. Teasing or joking comments, or subtle humor, she reads as serious comments, so we try to avoid that now. Direct and simple sentences seem to work best in communicating with her. It really fluctuates, too – something she might follow with no problem one moment might be really confusing the next, and then vice versa the following day. She can’t find the right word a lot, or uses one that is close enough to follow, but not quite right. (“I am looking for my winter hands,” saying “hands” instead of “gloves.”)

We do still have nice conversations, and she is definitely interested in hearing about our days, our families and our daily lives, and hanging out with us all. Vaness is able to communicate her needs and wishes to us for the most part, although her short term memory loss is increasing at a noticeable pace – she frequently forgets things within minutes. She is almost always confused on what day or time of day it is.

V now says things more simply, and laughs at things kids generally find funny. She will un-self-consciously make goofy faces to absolutely any baby she sees (including my Leo, who adores her). She stands in her house’s doorway and waves to the kids walking down her street on their way home from school. Vanessa’s sense of style has changed – she now alternates between walking out the door in too tight sweatpants with an old holey sweatshirt (a sort of outfit she wouldn’t have been caught dead in in public, before!), or choosing an outfit that head-to-toe matches in color from sparkling huge necklace down to her thick colorful socks and open toed flats (in a style a bit more matchy-matchy and matronly than Vanessa 1.0).

For reference: Vanessa's style through the previous years. She was a master at dressing elegantly, glamorously, and beautifully accessorized, even if just to a family party! I also want to point at that this has ALWAYS been the case, as evidenced in the bottom left corner: where even as kids, Christina and I are all squinty and awkward with whatever clothes we threw on, and Vaness deliberately chose her clothes I have no doubt and has fixed hair, hair ribbons, and is posing gorgeous! ;)

If you are Vanessa’s friend on facebook, you may have noticed this next one – as nuanced and sophisticated thinking and speaking begin to exit, she is a lot more literal these days, which is best evidenced by her posted photo’s captions! Sometimes she is being her creative self and aiming for funny, but a lot of times she is truly just describing very specifically what she is seeing in the photo, or whatever thought pops into her head as she looks at that picture. Here are some examples of captions she wrote herself, for pictures we took for Cancer Fighting Princess:

billy and me are showing are massive arm muscles as our weapon to punch whatever we need or want to!

well now we have the tree between us so maybe that means we can climb it and then jump down to use our strong fists maybe to learn we need to just give hugs instead.

my large smile is showing how happy i am about being such a famous cancer princess team of lots of pro individuals!

Adorable – and also revealing, right?

Something else we’ve noticed is that logic no longer always really resonates with Vanessa. You could tell her one or more simple, easy, clear reasons why __, but if that logic is in conflict with what she wants or thinks… the logic makes no sense to her. V listens (or not, sometimes :P) to what you say, then looks at your with this eyes-open and mouth-disgusted look, jabs her head forward, throws up her hands and just says “SO? So what?!!!!” over and over. It’s not really like she hears what we say and just doesn’t care (although, truthfully, she likely is being stubborn, too!), but more that she thinks (feels?) that whatever her brain seized upon is right and true and should therefore happen or be, and for us to say anything to the contrary makes no sense to her and is therefore really confusing and frustrating for her.

Behaviorally, these cognitive changes in Vanessa present some new challenges for us. Think 3-year-old not getting what they want, but as a grown up person with grown up strength and anger, and who is aware of and sensitive to being treated like a child… and you’ll have the right visual. These episodes could come as a desire to leave someplace that we/she can’t leave just yet, wanting to go somewhere when no one is able to take her, wanting to do something that we can’t really do, etc. As an example, if we’re in a store, she might be loading things into the cart that we/she really don’t need or make no sense to buy (such as water filters for a water pitcher she doesn’t own) – and if we mention that or try to explain, or put the item back, we’re likely looking at a tantrum of sorts.

This is enhanced by her loss of independence – often times (like anyone), when she feels mad like this, she just wants to walk or drive away/to the store/wherever and go and be alone, and she can’t. Talk about frustrating.

Of course, we don’t just walk around throwing logic at her nonstop! Many times we are able to accommodate what she wants in some moment no matter how illogical (let her make huge holes in a wall when she doesn’t like our smaller hole picture hanging suggestion, just plan to return an item later, chalk up a few (or few hundred!) dollars here and there towards some questionable purchases, make many trips as a whim strikes her, leave places early/late/whatever) and thus prevent the flare up or her negative feelings and emotions. But also, of course, there are other times when we just have to draw a line (for money or being reasonable or for our own sanity reasons) and can’t indulge her in whatever, and that’s when the anger episodes come.

Unfortunately Billy bears the brunt of these moments, as who V sees as the primary “enforcer” (for example, the times she has been mad at him for not “letting” her drive, although it’s hardly his “fault”!), but Mom and Christina and I have certainly seen this rage in action too. We’re all learning how to redirect (only sometimes works for V), distract (only sometimes works for V) and stay calm (only sometimes works for us!), but in all situations our main goal is to keep her and us safe while we get through it. Crazily, often times after some horrible screaming or stomping or upset episode, Vanessa might retreat to another room, and then emerge from it a few minutes later and have no memory of the incident, asking some totally calm question like “So, Jess, what do you want to eat for lunch today? :)”…!

With the poor-sleep issue I mentioned last post – we’re really hoping that V getting some better sleep might help with preventing the grumpies, too. Being the parent of some young kids/toddlers right now, many of these behaviors, and techniques for dealing with them, sure feel familiar to me! (Add to this Billy being fairly sleep-deprived these days as well – he’s practically “living the lifestyle” of a brand new parent!!)

Sun-catchers for Aunt Vanessa painted by Myles and Max

However, these angst-filled moments, while stressful and difficult and awkward and frustrating and sometimes scary, are certainly not every moment. The majority of the time, we are with sweet and calm Vanessa who is happily and intensely working on her random tasks, enjoying lunch out, etc. She is generally loving and kind, telling us all the time she loves us and enjoying spending time together with us. A few days ago we shared a nice giggle at my insanely-growling stomach; we work on projects side by side (see tomorrow’s post!); she listened to Harry Potter on CD with Mom; Billy and V visit friends and have dinner with family. She is able to participate in many ways with the world around her, but I would say that her world is shrinking daily. We don’t spend a lot of time in any deep places on conversation – life is quite surface-level now for her, for the most part.

 

 

~~~

This is part 3 of a series of update posts for November. (You can start here to read them in order.)

Tomorrow’s topic will be: Vanessa’s “projects”

We’ll add one post a day for the next few days until we’ve covered everything, so please stay with us through them all!

November Update Series: Physical changes

Physically, the cancer updates we have to pass along are minimal, since V doesn’t have many scans or appoints these days. We see outward indicators that the cancer is growing, such as the bump (tumor) on her cheekbone looking bigger lately, but can only assume from mental sort of changes that the brain tumors are growing (as we obviously expect). Tracy, and sometimes the other hospice nurses, continue to come each week for blood pressure sort of checks, and at times to adjust medicines, to assist in Vanessa’s sleeping or try to combat some recent aggression/anxiety. We also have gotten the results of the cancer panel genetic testing – it came back all normal, negative for any known cancer-causing or -related mutations.

Pretty Vanessa: she asked Christina to take this picture because she was particularly proud of how well her outfit and jewelry matched. :)

Vanessa is by no means your usual 31 year old in running around or anything, but she is still definitely walking and doing steps and her feet are getting her where she wants to go just fine. She had her rings cut off recently as they were getting snug, and the jeweler was surprised she hadn’t been in more discomfort from how tight they were. We guess that V’s pain sensors aren’t quite firing right, which is one thing going awry in that body of hers that we are SO VERY ABSOLUTELY thankful for! I believe she should be in much more pain than she seems to have, and I am so grateful for her not feeling that.

It does seem like, in a departure from the previous ravenous feelings V had, she is now less hungry. Meals are still enjoyed and normal (or sometimes still bigger) size, but if left to her own devices, she also often forgets to eat. Her weight gain has slowed, which a month or two ago would have made her very happy, but is not something that really is on her radar any longer. Her hair is growing, which does still make her happy – and while she styles it in a spiked out way I’m not sure Vanessa v1.0 would have approved of(!), Vanessa v9.0 now likes it very much. :)

Sleep has been elusive for V of late. Unless she is utterly exhausted, it’s like she cannot shut down her brain from the low level processing it’s constantly doing. She is non-stop seeing small OCD-style things that none-the-less need her immediate attention – putting that cup away, smoothing the sheets, centering a stack of paper so they perfectly align, locating and trimming loose strings off fabric, etc. This makes it really hard for her to nap, and she really doesn’t even want to try to relax during the day, either. :P Which would be fine if she then slept at night, but that’s not happening consistently recently either (4:00 a.m. is a common fall asleep time), so we’re trying a new sleep aid medicine with her and really hoping that works. I always imagine how hectic it must feel in her brain to have that much noticing and busy work going on, and not being able to get a break from it. Additionally, even when she does finally fall asleep, she gets up every hour or so to pee, so even the sleep she does get is not any long block of good quality REM time.

I took this sequence of pictures over several minutes. V had found a sticker sheet that had a few stickers curling up, so she wanted to sandwich them between cardboard to keep them down. She spent probably 10 minutes arranging the stack and lining everything up just so.

 

 

~~~

This is part 2 of a series of update posts for November. (You can start here to read in order.)

Tomorrow’s topic will be: cognitive changes.

We’ll add one post a day for the next few days until we’ve covered everything, so please stay with us through them all!

November Update Series: Catch up

It’s been a few months since our last Vanessa update. We had every intention of updating more regularly (and more briefly!) since the last mega-update in August …  but some of the days that have passed, and changes that have happened, I’ve not wanted to document in detail at all, much less share. These days are full of ups and downs, highs and lows, ever-changing behaviors and emotions and worries. I’m also, in many small and big ways every single day, certainly realizing the true capacity of the human heart to bond, and love, and grow, and connect, and push through fear, and rise to the occasion as needed.

So I am finally forcing myself to start writing a proper update on our dear Vanessa, today. There is a lot to say, so we’re going to do it in parts! I’ll try my best to give you a glimpse into the last few months, and shed some insight into recent days. I might not take you through every event that’s been gone to, every “version” of Vanessa we’ve met and adapted to, but I will detail the present for you. With all our posts lately, we’re treading water at the intersection of two rivers, where “preserving V’s dignity” and “conveying the truth” meet. There are some moments that we’ll keep to ourselves, but I will also be sharing some things that are difficult, but true. This will be an honest portrayal of life, now, for Vanessa.

[Note that this series is intended to be just that – a series, complete only together. No single one of these posts will be the whole story without the others. Trust me when I say you can thank Christina for the suggestion that I break this up after she read my first huge combined post! ;)]

Needless to say, recently has been the most challenging, heartbreaking, emotional, touching and exhausting time of my entire life thus far.  (And I am pretty certain I speak for Billy and the rest of both our families when I say that.) Beyond providing an update to those that love and care for Vanessa, I also think it’s important for me to document and remember this poignant time, even though it is hard, and not always pretty, before it dissipates in the haze of so much chaos. Last but not least, I also think it’s needed to add this particular voice and this particular story to the world dialog of breast cancer. There is no real shared reality just the same for everyone, but this is is what breast cancer / brain mets / life in hospice care is currently like, for Vanessa and us.

So without further delay, here goes. (Standard disclaimer applies – Each of these posts is bound to be a long one, again! I also have a lot of pictures, but am going to try to condense them down with collages for your scrolling-reduction pleasure.)

Starting with a catch up, here are some random pictures of just a few of the places, people, events of the last few months:

[Starting at top left and moving in rows: At ADC gallery for Angelo Merendino’s exhibit “The Battle We Didn’t Choose: My Wife’s Fight With Breast Cancer”; In Mexico on an impulse vacation; Vanessa is second from the left on this loaf of bread coupon!; Billy’s Grandma turns 90; Photobooth fun at a Pink Ribbon Girls event; Live Sincerely pumpkin by Ellen & John.]

Caught up to now… I’m so glad October is finally over. As you can probably imagine and understand, the hoo-rah of the month, with messages of breast cancer as this pink, fun, minor, sexy thing that YOU will CONQUER with your sheer SMILE and HOPE alone, (or maybe by buying this pink __ to support awareness), GIRL!, …doesn’t really ring true for me, especially this year, as this very non-sexy breast cancer slowly but surely steals my sister’s memories, intelligence, passion, personality and independence, and is working on taking her body too.

However, the one bright spot of October was right in the middle of the month. October 15 was Vanessa’s birthday. She turned 31.

It was a bittersweet birthday, with alternating, heaping helpings of the bitter and the sweet. Billy and Dad cooked, Christina helped Vanessa set out cute chip bowl arrangements, Mom had shopped for our presents for V, and Jason and the boys came in masks just for fun. I made Vanessa a yellow cake with chocolate icing (per her request), both from scratch for the first time ever, and I used all the true, old-fashioned unhealthy ingredients the recipe called for. Thus I think we each ate about a stick of butter in our own slice of the cake, but it just seemed appropriate to go big or go home, this time. We gave Vanessa some comfy clothes that were purple and she really liked them, and my kids made her cute sun catchers, but the gift highlight of the evening was when Vanessa gave US each presents and cards of love. A special, sad, joyful day, and the perfect little family celebration of it.

Happy Birthday, Vanessa!!!!

 

~~~

This is part 1 of a series of update posts for November. Tomorrow’s topic will be: physical changesWe’ll add one post a day for the next few days until we’ve covered everything, so please stay with us through them all!

Live Sincerely tattoos!

Ooh, tattoo!

Live Sincerely tattoos!Check it out – There are now four different “Live Sincerely” tattoos out there in the world, that I know of! (Perhaps more I don’t??)

It’s so touching that people believe in this message enough to ink it onto their bodies.  I love the way each person made the art unique to them, too.  Lovely!

If anyone else is so inspired, be sure to send us a pic of your Live Sincerely tatt!

Aunt Vanessa with baby Leo

One year ago – baby Leo V

One year ago (as of September, I’m a little late!), my littlest little guy was born. Here’s a picture of Aunt Vanessa meeting Leo in the hospital. :)

I’m finding it hard to believe this was just last fall…

Aunt Vanessa with baby Leo

Aunt Vanessa with baby Leo V. "V" is for "Vanessa" :)

Pledges update (2 months)

Now with 2 months of the pledge being online, we are up to over 700 PLEDGES! My first update post was excited at having 70, so we’ve repeated that amount 10 times over again. :)

I can’t even express my happiness at knowing this many people, from this many places, have read our little pledge and are joining us in living this way. We WILL make a better world, and find our way in it, together. Thank you, all, and welcome to the project! Check out all the lovely entries for Assignment #2, with more added all the time, and we invite you to contribute yours if you haven’t yet. We’re working on project assignment #3 now, so stay tuned!

Take a look at that blanketed USA! Anyone have friends they could spread the world to in Montana, Arkansas, Mississippi, Rhode Island, Alaska, or Hawaii? With pledges in those states we’d have some from all 50. :)

Hospice/Caregiver: A day in the life!

Nothing big to update today! Just wanted to give you a visual of what hospice is these days, for Vanessa, and share some little moments from this past week. :)

Three Vanessas: Circa 1984 in the photo on the table (she's on left), in 2005 in the engagement photo on the wall (she's on the left again :P), and 2012 in the chair. :)

(This is a fairly casual and picture-heavy post – hopefully a nice balance to all the words and heaviness of our last update, ha!)

This is how we’ve been addressing caregiving V, while also still keeping up (to some extent!) with our work and home lives: I’ve been working remotely from Vanessa’s house twice a week. Two other days, Mom goes over to spend the day with Vanessa. For the remaining work day of the week, Mom is there in the morning and Dad comes in the afternoon. Christina comes into town for a week at a time, so those weeks she is there all week too. Then throughout the week, Billy’s family helps out with an hour or two here and there that V is ok with. Billy, of course, is V’s main man in evenings and on the weekends and he takes time off work frequently for appoints and such, too. Needless to say, it’s quite the tag-team effort. :)

Here’s a bit more on how my “Vanessa days” go!

On my days at V’s house, Mom has to get to my house (to watch the kids) around 6, so I can go over to V & B’s house before 7, so Billy can finally leave to get to his work. Waking up at 5 to make this all happen makes for an early morning!

Mom with oatmeal

Not-quite-awake-yet Mom, making her morning mug of tea and getting oatmeal ready for the kiddos in my kitchen. You're awesome, Mom!

Then once I get to V & B’s house (aah Billy I forgot to take a pic before you left, sorry!), some days Vanessa is already up and eating in the basement.

Vanessa's basement breakfast

V enjoying some cereal downstairs, and marking her calendar full of more mini-adventures to come.

Other days V gets up a little later in the morning. At the end of this week, Christina came into town so she was there with us, too!

V & J kitchen

Please ignore that I am creepily laying on Vanessa's back (that robe is SOFT; I can't help it!), and instead notice the AMAZING IKEA KITCHEN!

V & C breakfast

Christina and Vanessa eating breakfast while the sunlight streams in, ahhhh.

Reuben

Reuben!

Green pill bottle

V's medicines are now conveniently delivered by mail through hospice... in these pretty green bottles.

Once we are through breakfast, the rest of the morning is boring. I work from in the living room while Vanessa watches TV downstairs, or works on her computer or sometimes comes and does other little projects in the same room too. I pretty much just work the same as if I were working from home at my own house, but I am also able to keep an ear out for V if she runs into any problems, and we can spend the extra time together taking little breaks throughout the day.

When Christina is in town she works from in the living room, too! It’s funny knocking out a lot of work side by side in silence, or even more so to listen to each other be our professional business women selves on our phones for work meetings…  while we sit there in our comfy clothes (ok, maybe jammies some days) and work at tray tables on loveseats with a puppy running around. :)

Our shared "office" - with sweeping views of Delhi all around! (And Reuben is sitting under V's chair, not to be too far from where all this action(?!) is...)

One recent morning a freaky bomb-raid sounding siren went off….  we finally realized it was the way-excessively-scary-sounding door bell, and welcomed in a beautiful and delicious edible arrangement sent from a good friend.

Edible arrangement

Pretty AND yum!

Early this week we went to Kroger to buy lots of yummy lunch fixins (thanks to another old friend for the Kroger gift card!), then made some delicious and healthy wraps for lunch. Other days we head out to eat at one of the local restaurants, or even the Kroger salad bar!

Later this week V had a dentist appointment, so that day Christina and I took an early lunch break to run that and some other errands with her.

Sitting in the waiting room, Christina and I came upon this article about brains and how complex and vital they are to our bodies; seemed appropriate!

Dentist appointment - check! V gives a thumbs-up to nice clean teeth and free sensitivity toothpaste samples...

...Then we head to the post office to mail the most recent "Cancer Card" order for Blustery Day Design. This is real small business glamour for you; no administrative assistants or private jets in our business model, ha!

One last stop for shampoo at Walgreens. We wonder why the fine for parking in a handicap space with no permit is $305 and not, say, $300 even? But we have V's pass, so we're good in any case!

Then the afternoons flow just like the mornings, working in the living room and chatting with Vaness between meetings and emails. V sometimes takes a nap in the afternoon too.

Each day, we try to have one goal of something to work on or finish, whether it’s find something to wear for the next “thing” out, make a list, finish a project, go through a pile, return an email, or make a phone call. On a good day we even accomplish a few different things!

At the end of his work day, Billy comes home to their house, and then I head back home to my house, to relieve Mom to head back to HER house. Whew!

So then I do hugs and dinner and baths and beds with these sweet boys

My kiddos / Vanessa's beloved nephews

then have a quick catch up conversation with my equally-sweet hubby.

Some down days I might then meet Mom, Christina (if she’s in town), Billy and Vanessa at the gym to work out. (Or not, when we’re too tired to go back out for the day, which is pretty often. :)

V feeling the burn!

Or on rarer nights, if she’s up for it, V & B may go all out and do something special in an evening – a dinner with friends, a concert, a movie. This past week V & B went to the Carolina Liar/The Fray/Kelly Clarkson concert, and Vanessa even got a picture with Carolina Liar – and a Live Sincerely sign!

Vanessa with Caroline Liar and Live Sincerely sign

Most nights though, it’s a quiet night at home. ;)  Then it’s finally to bed for all of us, ahhhhhhhhhh.

Making these days happen takes a lot of coordination between all us”caregivers”, but I would be remiss if I didn’t point out that it also takes a LOT of assistance from others as they pick up the slack in other areas. Jason is on kid duty a lot so I can spend this time with V, and David holds down the homefront while Christina spends entire weeks away. Our friends and families listen to us as we decompress and wrap our heads around this day by day. Our workplaces are also patient with reduced schedules and rearranged meetings and occasional dog barks in the background of calls. THANK YOU, all!

So, this is currently what hospice is for V! She’s certainly slower than she used to be and we have to do a lot of prep work to pull off things that otherwise are easy or simple… BUT she is still loving and living and thinking and laughing and DOING. Things take a lot more effort and time now, the same conversation might happen several times a day, and we may be venturing out aided by a wheelchair. We often have to remind Vanesss of what day it is, what thing we have to do that day, etc. However, I do think that Vanessa is right where she wants to be, and feeling pretty dang good considering what she is dealing with. She’s NOT, in any sense of the word, “giving up” on her life.

Vanessa is dying, it’s true, but she’s also LIVING, here and now and every moment. I am so grateful for the time we are getting to spend with her now.  Each day, each uneventful little conversation and errand and shared meal and trip, is so precious to me. And please know that ALL the wonderful “Live Sincerely” pictures and messages and cards and email do so much to buoy Vanessa along in an ocean of love and support. THANK YOU!!!!!!!!

* LIVE SINCERELY! *

Assignment #2: Introduce yourself!

Your next Live Sincerely Project assignment: Make a sign that says “Live Sincerely”, and take a picture of yourself holding it. You can submit your photo at the bottom of this post.


Let’s, right off the bat, make this thing personal and visual, so we can see the faces of those walking the road alongside us. The sign can be as simple as your handwriting in sharpie on a piece of binder paper, or as fancy as you’d like – totally up to you!

Note: If you’d rather stay “anonymous” all Clark-Kent-like, but still want to participate, just get creative in concealing your identity in your photo (hiding behind your sign, wearing a disguise, etc.)…

Extra credit ideas:

  • Fancy sign: Make a big sign or a colorful sign, use interesting materials, or add glitter/photos/seashells/whatever!
  • Location location location: Go one step up from a headshot of you from your webcam – have a friend help or use a self-timer to take a pic of you holding your sign outside, or at a place that inspires you, or with a big group.
  • Hang it up: When you are done taking your pic, hang your sign up to remind you of your pledge to live sincerely each day.

Assignment #1: Pledge!

Photo by Jennifer McCloskey


Your first Live Sincerely Project assignment:  Take the Live Sincerely Pledgehere on the website.

Do you want to commit to living a more meaningful and purposeful life? Read the pledge, and then beneath it add your name to the list of people who have publicly promised to live this way.

Thank you for being a part of the Live Sincerely Project, by joining us in working on the assignments in your own life… You are an important part of this community effort!

Extra credit ideas:

  • Make it a meaningful moment: Read the pledge out loud. Have a private ceremony and light some candles or otherwise mark the occasion of your pledging. Read the pledge together with your family or friends at a gathering.
  • Keep it visible: Print the pledge and place it somewhere you will see frequently: at your desk, by your door, on the fridge. Make a sign that says “Live Sincerely” and put it in a prominent place.
  • Spread the word and support: Let your friends and family know you pledged (post a facebook status, write a blog post, email your contacts) and invite them to join you. Talk about what it means to you. Encourage each other to live this way daily.

Inside the pledge: Overall themes

In the “Inside the pledge” series of posts, we further dive into the themes and sections of the Live Sincerely Pledge. We invite you to explore in your own way any specific topic that touches you – leave us a comment here, post your thoughts on your own blog, write in a journal, make an art piece, whatever inspires you to reflect!

You may notice that the pledge has a lot of 2-line sentences! This not only makes for a nice poetic sound when read, but also demonstrates a key element we wanted the pledge to incorporate: balance. The best parts of life are discovered when we find just the right balance: accepting our nature while challenging ourselves to reach outside our comfort zone, or finding the elusive place between independence and dependence. Life isn’t black or white, and even if it could be, who would want that, because you’d miss all the messy, muddy grays in the middle – and those are what make life so beautiful. By reducing the contrast, you develop the ability to see the nuances between shades of gray. (Oh, geesh, now that particular phrase is ruined, isn’t it!)

One of the easiest ways to find one of your own areas of opportunity is to examine yourself for where you swing most wildly…  where are you most out of balance? What is your biggest hangup you can’t get out of your head, and have totally allowed to carry more weight in your life than its actual significance? Or, there may be that one, positive healthy thing you spend a lot of time and energy on and it’s all good…  but is there a flip side to it that you aren’t exploring in the process? How can you expand yourself to grow in something complementary or even very different?

Another theme of the pledge is the duality of life. Here’s the thing…  some stuff just sucks. No point in sugarcoating it, and denying it doesn’t make it any easier. Life is not fair, and bad things do happen to good people. Some people are mean. Life is difficult, confusing and painful. This is the side of things that is usually easiest to see, ha!

However, if we get too focused on those negatives, we will not see, notice, appreciate and enjoy the flipside of that coin… that some people are good, and some people are downright amazing. Sometimes you are on the right side of luck. Sometimes good, even GREAT things happen to good people who really deserve them. Sometimes we get MORE than we deserve. Life is filled with beauty and choices and relationships and opportunities.

Something you may notice is absent from the pledge is any element of faith or religion. If your life and belief system contains a faith or religious view, I bet you read the pledge and see it there, even though it’s not specifically mentioned. You might say the pledge as a prayer, or utilize your faith community for support and encouragement. However, we did not include any sort of faith in the pledge explicitly, as we believe anyone of a non-conventional faith or who is an atheist can absolutely live sincerely in exactly the same ways as someone with any traditional religious belief.

It’s important that we not assume everyone else is just like us (“us” being our individual self, our family, our local peers), and not judge others for their personal beliefs. Wherever we draw inspiration from, whatever gives us hope, whatever we have “faith” in (be it science or humanity or nature or a religion) can be a source of power for us on our individual journey. The pledge is inclusive of everyone and anyone, and we all can live sincerely within how we each live, what we believe, what we think. Let’s commit to supporting each other without imposing our own opinions, and looking for ways we can learn from our differences, as well.

 

 

USA locations of pledges as of July 1, 2012

Pledges around the world (week 1)

World locations of pledges as of July 1, 2012

The Live Sincerely Pledge form has been online for just one week now… and over 70 people have already publicly added their name to the pledged list! Thank you all… and if YOUR name is not on the list yet, we invite you to add it today! (Take the pledge here.) If you’ve signed your name already, please share with your friends and invite them to join you.

We used the spiffy Batch Geo website to paste in all the locations that have been entered thus far, generating these maps of where the pledges have come from. It’s so awesome to see activity from all over the world.

Can we get all 50 states?!
USA locations of The Live Sincerely Project pledges as of July 1, 2012

Thank you, thank you, thank you!

Hospice (Jun 21, 2012)

{NOTE: This was originally published on Vanessa’s CarePage. We are copying all those posts here to have her story in one place that all can access. We are back-dating the posts to match when she originally published the post there.}

Posted Jun 21, 2012 11:52am

Jess here, with an update on our lovely V. :)

Vanessa had her follow up MRI last week (and it was much quieter this time, whew!). The results showed the cancer is holding steady – so no smaller than before whole brain radiation, but also no larger. There was also some swelling showing up, likely a side effect from the radiation. (This swelling is what was inconclusive with the last test… it could have been crazy more cancer, so swelling was the best-case for the unclear spots to be.)

Dr. Cross (radiologist) explained the new plan is to taper down the steroid dosage to the lowest possible, but not probably go off it entirely any more – without the steroids the headaches are unbearable, and with the steroids V feels bloated and rashy and hungry (oh man, soo hungry!), so the goal is wherever in the middle best minimizes the steroid side effects while preventing the horrible headaches.

We also asked him where in her brain the tumors were, and he mentioned that the largest tumor was about 1 inch and in the right frontal area, which is where emotion and thoughts are formed. This area controls things like memory, putting together a concrete thought or sentence, etc. Vanessa definitely is feeling some changes, feeling pretty annoyed at the “loopy” or “fuzzy” moments she has, while also having clear times, too. She’s gotten dizzy a number of times, occasionally even falling, but she has said that it’s not from weak legs or a physical reason as much as her brain getting confused while she walks. So she’s taking it slow and someone is always around hanging out with her, so we can be there to lend a hand or shoulder when she needs it.

I think it’s fairly frustrating for Vanessa to not feel totally her normal self, and she worries that people will think she’s stupid when she struggles to find a word or hone in on what she’s trying to think. Luckily though, with her bald head and visible scars, people out in the world seem to have an inkling of all that she is going through, and have been very patient and understanding… and my whole life I’ve been her “pocket dictionary Jess” so I have lots of practice knowing what word she is looking for and helping with that! ;)

Speaking of bald heads… her hair is growing back in, WOO HOO! V’s comment to this is: Finally! :)

We also met with Dr. Brennan (oncologist) this week, and after reviewing the MRI results, he said those dreaded words you know will happen once you are stage IV, but that you still aren’t ever ready for… There is nothing more to do. So the cancer was steady from last scan, but since the tumors remained after whole brain radiation and there are so many in so many areas of the brain, there isn’t anything else to try at this point.
Given that, Vanessa no longer needs to do her methotrexate (head chemo for the brain lining mets) or zomeda (bone treatment to prevent bone issues), although she will continue the anti-hormone treatments (“butt shots” as she calls them!:P) to keep the body cancer in check.

We’re meeting with hospice this weekend to meet the team and learn more about what they will be able to do to help Vanessa, and help us help her too. Hospice is such a scary word and holds so much meaning with it, but what’s also true and important is that really, even with Vanessa now in hospice care… nothing has really changed day to day. Hospice really just means that there isn’t a next cancer treatment to try, and so we can now make each decision based on what’s most important, today, right now, in the short term. V will absolutely still be treated for any pain as well as any other ailments that are still treatable, and she is certainly still up and about and able and enjoying things and laughing and smiling and listening and doing. We hope for the cancer to grow slowly when it starts growing again, and meanwhile we all live each day in the moment.

We keep looking back at the Live Sincerely Get-Together party pictures together, and are thrilled it went so well and grateful to have such great pictures of everyone there to relive it through. Vanessa is thinking about what next project to start (maybe some sewing?) and the new, gorgeous IKEA kitchen is well underway. We’re so excited to watch the Emmy award show this weekend to see if they show a clip of “Baring It All” (the SCAR Project Documentary by our friend Patty, that Vanessa was in) when it WON AN EMMY LAST WEEKEND! There is also a SCAR Project opening in DC in October and January in LA, so the message moves on and out… So life with the words “hospice” having been said, is a lot like life before, just with even more people in V’s corner. :)

Vaness has lately enjoyed seeing people in small groups for lunch, so we can set up to meet up with anyone who would be interested! You can call or email Sharon, Billy or me/Jess and we can figure out how to make it happen.

If anyone wasn’t able to write a page for Vanessa’s “message book” at the party on the bridge, you can still contribute! Write/draw/anything you want on any letter size piece of paper (one or both sides is fine) and we’d love to add it to the already awesome pages of Vanessa’s book. You can give to Billy/Sharon/Jess, or mail to Vanessa at her and Billy’s house.

Thanks for everyone who has been offering to help… we’ll update here soon what you can do, once we organize our ideas on what would be most helpful.

Live Sincerely! Today! Now! Go do it! :)