I bet you are awesome

In October of 2012 my sister Vanessa got one of those recordable books where you can read the book and store the recording for later, safe in the book itself and able to be accessed later at the press of a button. It’s a book to be read to a small child. I had no children at the time, and no real plans for any anytime soon, but we already knew by then that she was going to die and Billy and Jessica helped her get the book to be ready just in case.

"Christina, This book was for sure intended for your maybe babies! :) Hope they or her/him love it! OK "maybe mom" i bet you are awesome with your kid(s). Love you! Vanessa."

Reading this note gives me so many feels about the slow progression of Vanessa’s cancer. By October 2012, she had already started confusing and simplifying her words. Billy and Jessica had to help her record the book, slowly and carefully, page by page.

I am overwhelmed by how Vanessa had no idea what was in the future for me, but that even through the confusion of brain mets she still “for sure” had faith in me to be “awesome.”

Because everything changed after that. My marriage fell apart, and then Vanessa died, and then slowly my friends and family helped me find ways to grieve it all and be strong by myself again, and then I fell in love again on accident, and then I moved to Nashville “to see if this relationship can work,” and then it did work, with this wonderful person — a spectacular, kind person whom Vanessa never knew and who never got to know her. And then I got pregnant, and Jimmy and I were sort of terrified, but we took a deep breath and decided to walk together bravely towards the unknowns of our future. Then we got married, in a wonderful ten-minute courthouse-adjacent ceremony where I was scandalously, gigantically pregnant and couldn’t stop giggling the whole time, and where I could have almost burst from the enormity of hope and love present.

Then the sister that I still have left threw me a baby shower, and afterwards gave me this book that she had carefully kept wrapped up safe in her basement on the off chance my life would change to welcome a “maybe” (now no longer maybe) baby.

And then I went to the hospital to have this baby, and when right at the beginning the IV was botched and my arm blood was all over the bed and it hurt like hell and we hadn’t even got to, you know, childbirth yet, I thought of Vanessa and her years of treatments and surgeries and how she never complained, and how, when she told me on the phone that her cancer had metastasized to be terminal, she tried to comfort me.

And so then I had a daughter, an actual living human who I still can’t believe they just sent us home with like we’re grownups and know what we’re doing or something.

Then the Winter Olympics opened this month and I was jolted to remember that it was the Winter Olympics, eight years ago, when we first learned that Vanessa was going to die from her stupid, horrible cancer, and how I spent that day in 2010 shell-shocked and frozen and staring at the television to have something else, anything else, to think about.

Maybe Dottie will be a hair-twirler, just like her auntie Vanessa.

Now my daughter, Dorothy Vanessa, is two months old, so little and so infinite. She is beautiful and good, and she will never know my sister, her aunt, the beautiful and good woman who inspired her middle name. I take cute videos of my Dottie and then I send them to Mom and Jess in the group chat we have, and we all feel but don’t need to say how Vanessa should be in that group chat too because she deserved to be, she deserved to live to see what we are all becoming, and it is so sad and so wrong that she has been gone for four years.

Oh! My heart.

This never gets easier. It just changes, from year to year. I am humbled by my sister’s faith in me. I am staggered by and so very grateful for her love, even now.

Vanessa, October 2013

There are lots of recent changes in Vanessa’s health to report, and as usual never enough time to communicate them in a timely manner, so I’m hitting you today with another mega-catch-up sort of post. Hang on tight!

Pain enters the stage, from stage right

I got V a "geometric patterns" coloring book and we work on pages from that in moments of silence or pain. She made me sign and copyright the bottom of this one because she liked it so much and wanted to protect my artwork. :)

I got V a “geometric patterns” coloring book and we work on pages from that in moments of silence or pain. She made me sign and copyright the bottom of this one because she liked it so much and wanted to protect my artwork. :)

After being so lucky in a general lack of pain, Vanessa has begun to have serious pain, in her chin and chest mainly, but other times popping up in her sides and back, among other places. Some part of her always hurts, but then other pain flares up very quickly to a very bad level. Hospice helped immediately to detail medication options we can use in moments of flare up, as well as more consistently to keep it under control. It is this development of pain that makes me so happy to have hospice on our team already, waiting in the wings to use their experience and knowledge of pain management to make sure we can help Vanessa stay as comfortable and in as little pain as possible.

PET CT scan

As an investigation of the pain, Vanessa got a most-of-body PET CT scan, the kind where it takes “slices” of your body that can then be viewed in sequence sort of from top to bottom. The scan showed the cancer has progressed greatly among her bones and organs, with spots that were already there showing much larger, and many new places now with cancer. There were new spots showing on her chin and neck, adrenal glands, liver, and thigh.  The casual term used was the scan “lit up like a Christmas tree” – and it confirmed that the newly recent pain is likely due to bone mets.

Some examples of the actual wording of the imaging result report include:

  • “There is evidence of extensive multifocal hypermetabolic osseous metastatic disease. This has significantly worsened since 9/12/12 {the last similar scan}.”
  • “There is continued disease involving{…}. Now there is additional disease involving {…}. There has also been significant interval worsening of the disease throughout {…}.”

More palliative treatment (radiation x2)

Thus, we explored and ultimately decided to go with the treatment recommendation that resulted from what the scan showed, which was to pursue palliative radiation for the bone mets. The treatment has no intention or likelihood of prolonging her life, as bone disease isn’t generally directly the cause of death in a body with metastasized cancer.

However, if the radiation can lessen those tumor growths, her pain should be significantly lessened as well, so it definitely seemed worth the extra effort and expense to make happen for her, with pain management being our ultimate goal at all times. We can get some clear pain relief benefit for V without really changing course from the spirit of hospice.

There are 2 prongs to the radiation approach. First part of the plan was a high-dose one-and-done radiation blast to her chest, which targets that area shown on the scan, in sort of the usual radiation, skin-burning, direct sort of way. She had this done end of last week.

Then a few weeks later, she will do a radiation injection, that goes in through her port, and then travels through her body and binds to the cancer anywhere in her bones and attacks it that way. (If I am remembering the appointment correctly, the name of this treatment might be Samarium.) This also is palliative and should give her a more widespread help in multiple locations. After this injection, the doctors will be watching her blood levels and she’ll likely have reduced immunity for a bit.

I found this article that includes some information about the treatment:
“Another type of systemic radiation therapy is the injection of radioactive compounds to treat metastatic bone cancer, a condition in which cancer has spread to bone. After injection, the compound is taken up by bone tissue, carrying radioactivity directly to the cancer cells within bone. The treatments are specific for this purpose: they are not used to treat other organs besides bone, and are not used to treat cancer before it has spread.
Although not offering a cure, effective treatments for metastatic bone cancer are important because they relieve pain and help prevent bones from becoming weakened and at risk for breaking. This helps people coping with cancer maintain or improve their quality of life. For example, it may make it possible to reduce or stop taking powerful painkilling drugs (and therefore reduce side effects from these drugs).”

Whole-body bone scan

The injected radiation attaches to the cancer in the same way the contrast dye of a bone scan does, so in order to test that the medicine would bind properly and thus be worth doing, they performed a bone scan. Rather than “slices”, this scan returns a very identifiable skeleton looking image on your bones, with cancer “lighting up” as spots. The results of that test for Vanessa also lit up everywhere in her body, with some spots showing cancer where she hurts, and other places lighting up like crazy in places she hasn’t mentioned thus far, such as her knee.

Some skeletons, just in time for Halloween! This is a photo of a photo, then with colors reversed... but in any case, the white here is cancer in Vanessa's bones (2 different views, both her).

Some skeletons, just in time for Halloween! This is a photo of a photo, then with colors reversed… but in any case, the white here is cancer in Vanessa’s bones (2 different views, both her).

The report included impressions such as “Chronic metastatic lesion suspected… Progressing metastatic involvement… new metastatic lesion… residual metastatic activity…”  With the new spots including the calvarium {skull cap}, left humerus {upper arm}, left acetabulum {pelvis}, and left femur {thigh bone}. Some spots had also “resolved,” since last similar scan in 2010, I guess from some treatments done between the two scans.

Since the cancer did light up, it means the contrast dye “stuck” to it, and so also the radiation injection would “stick” and work properly, and so that will happen in another week or so.

Hospice break

Her hair is getting longer! This picture was taken in September.

Her hair is getting longer! This picture was taken in September.

Even though it’s palliative in nature and done for pain relief, this sort of treatment is “aggressive” in nature. (More so than, say, more passively taking pain meds only for the bone pain.) Thus, for these recent scans and treatments, Vanessa has been signed out of hospice. You might not be aware, and I sure wasn’t prior to this, but entering into hospice isn’t a one-time-only-and-you’re-never-out sort of thing! It’s really not a big deal for V&B, or hospice folks, to have Vanessa sign out to pursue anything she wants, and then sign back in when she’s done. She also does this sign out/in whenever she travels more than like a day trip somewhere. Luckily there is no maximum number of these sign-ins, because she’s racking them up! ;)

So I’ll add that as another side note for anyone that is currently or might futurely be thinking of hospice – know that it can likely allow for the ability to receive the sort of care you want, any time, still, and you are able to “change your mind” even if you decide to try some other treatment or maybe clinical trial later or something. The hospice team supports you getting the care you want, whether that’s sticking in hospice care for comfort and care to the end straight through, or taking any detours you see fit to try. And hospice welcomes you back any time you are ready to return. So as soon as the last treatment is complete, we’ll be getting Vanessa right back into hospice care… we sure miss our care team meanwhile! :)

Dread and anger and resolve also enter the stage, from stage left

Full disclosure that it’s late and I’m tired, as I type this, so please bear my bluntness. I suspect I’m going to be light on the hopeful prose here, and just say the truth of things in a raw way. In a nutshell, this is the development we were dreading. Not the progression shown on the scans; this result we expected and knew was coming. (And unlike the last brain scan, what we saw this time matched our expectation.) The pain is what we’ve been dreading.

Pain is what kicks it all up a notch: in our caretaking game, we’re feeling more protective of Vanessa, and taking better advantage of the expertise of hospice, and needing to consider how to try to stay in front of it proactively so we can limit having to react to pain felt; in our mental state (speaking for myself, mainly, but I suspect for all of us), it’s also elevating us from resignation, in a way, to a degree of indignation. It seems horrible unfair that not only will this horrible disease take life itself away from Vanessa, but it also would conspire to bring her pain as she loses everything.

While I am so grateful to know there is (well, once she’s signed back into hospice!) a team of people ready to prevent her from as much pain as possible, it sucks to see her hurt before the pain meds kick in, and cry out as pain wells up, and lash out as we aren’t able to fix it for her. It’s agonizing, for her and us.

As October brings its waves of pink shopping “for the cure” and “awareness” campaigns and “feel your boobies tee hee!”, it’s extra-maddening to witness this pure suffering brought on by the disease. Nothing about my sister dying a slow and painful death from breast cancer is pink, pretty, sexy, empowering or cheerful. She cannot fit the “strong and sassy survivor” mold, and she proves that you can fight a hard, long “fight”, and cancer may kill you still. She proves that it can happen to you, it can happen to young people, that this is not a disease we have beat or conquered by any stretch. Her scars and burns and losses say that even for those who survive, these treatments that are championed so much are still grueling and crippling and terrifying, and how is this accepted as enough? Vanessa’s story says “Don’t ‘save the boobies’! Save people!”

This whole topic deserves its own post, but I’m too exhausted these days to write up my own thoughts at this time, so instead I’ll point you to some amazing blogs that tirelessly push for awareness of and research into metastatic breast cancer, or portray the scars and struggles of cancer in a more real (less pink) light. These sites speak a breast cancer truth I DO see, first hand:

Day to day life for V

Sweet dreams, V!

Sweet dreams, V!

The scans’ glimpse into V’s body was fascinating, as usual, and I am grateful each time we get a visual of the enemy that’s advancing. I was a bit shocked to see just how much the cancer has spread, and it affirmed both that V has been lucky (relatively speaking, of course!) in not having more pain thus far, and also that she may not be able to communicate with words correctly what she is feeling in there. Sometimes she’ll rate her pain as a 4 to one of us, then moments later as an 8 to a different one of us; some days she’ll say Nope, no pain now, but then in the same conversation she’ll be rubbing her chest with a pained look on her face and wincing.

In many ways, Vanessa has ceased to be a reliable narrator of her own experience, any more.

Beyond pain, there are some other physical changes in Vanessa recently too. There is a lessening of control of some body functions, although nothing constant at this point. She is eating less, talking less, participating in conversations less. She is resting more, falling more, napping more, watching tv more. She relies on her wheelchair more in order to get through an event or trip, although is not using one in her house at all. She has moments of extreme agitation and anger, which Billy bears the brunt of. Vanessa is less interested in things, less animated, less expressive. She retreats from us all often, whether physically in her house to another room, or just mentally checking out of a conversation. I see her turning inward more now.

Her hair jussssst barely made it... but behold, 2 french braids!

Her hair jussssst barely made it… but behold, 2 french braids!

That said, we still have many moments of pleasant, quiet togetherness, and Vanessa will describe most days as feeling good and enjoying herself, pain and all. V will still occasionally call us with excited tales of the day’s events (often re-telling the same happy moments several times in one phone call!:P). She loves to be pet on her head by Christina, and have her hair braided by me, and watching movies with Billy, and being hugged by Dad, and watching Ellen (the tv show) with Mom. She enjoys the company of a broader range of people, which thankfully allows Billy’s family to also have the opportunity to spend some more time with her now, although she also can handle less “people time” per day now too. We have fun trying new hairdos in her crazy chemo/whole brain radiation hair. She spends her days making ever-more “Live Sincerely” signs on her computer and spelling out the words out of small objects for photographs. Her most recent new project is listening to CDs from the library non-stop, of all different genres (and I do mean all: country, rap, sound effects, opera, pop…!). We often talk of death, hers and everyone’s.  She lights up at mention of my boys, although she can tolerate all of them in a room together with her for a shorter duration now before it’s overwhelming. She sometimes still gets on Facebook, although not as frequently as before. We have lunches and dinners and talks and hugs and birthday celebrations…

Vanessa turned 32 on October 15.

Vanessa's 32nd birthday celebrations. We rode the Tilt A Whirl, which is a ride we have enjoyed almost yearly as a family since we were young.

Vanessa’s 32nd birthday celebrations. We rode the Tilt A Whirl, which is a ride we have enjoyed almost yearly as a family since we were young.

Vanessa has now lived with cancer for 7 years, so remember that she fits that rosy side of the stat of “making it 5 years past initial diagnosis” (of stage 3 in her case). I am far from settled with her story, statistically, being used to give someone hope. Hope for a full, sincere, earnest life despite any diagnosis? Absolutely. Hope for pure “duration of life post-diagnosis”? Sure. But if we are talking quality and relatively symptom free living… her statistical survival data would be misleading and hardly tells the whole story.

I do feel that in general, a new phase of hospice, disease progression and life has shown itself. Day to day, the changes are slight, but it does feel that comparing now to a few months ago shows some changes that are consistent enough to be considered a trend, and a turning of a page. As autumn just starts to show itself outside, I see her leaves a bit further along, starting their loss of color and graceful fall to the grass.

Day to day life, for us

As for us, we are all also adjusting around her, yet again, now. We are paying more attention to Vanessa’s non-verbal actions as an indicator of pain, rather than relying on her mentioning it to us, especially early enough to nip it in the bud. We are being more purposeful stewards of her medication schedule and hospice team. We are strengthening ourselves up, as best we can while already run ragged, for the mental stamina that will be needed to come, to be present as V progresses through potential suffering, and to do everything in our power to alleviate it. We are hanging in there together as her caregiving team, as it brings its time-sucking intercommunication demands and coordination needs, and challenges and struggles and laughs. (No one else can laugh at a totally inappropriate joke related to caregiving, and then simultaneously follow it with an “awww…”, quite like we can with each other.) Sometimes we burst along with energy and purpose, and other times we crash and burn and sleep away tears.

We are gentle with ourselves when our first reaction to a particular aspect of now-Vanessa is something less than positive; be it aggravation, disgust, annoyance, tiredness, selfishness or guilt, we try to push through by turning it on its head and reaching towards Vanessa in comfort and love. We keep finding her and ourself and us, again, this way- a continual reaching out in the total darkness with probing hands, to then find and grasp with relief and reaffirmation those invisible strings of love and history and connection, forged over decades of family and marriage and friendship, that hold us together and pull us through even as so much has changed and it’s so hard to see in the dark.

We are ever-conscious of our diverging journeys – Vanessa travels down the road of decline and un-health as we are living the usual forward progress of health and growth and opportunity – and try to jump over the divide to ensure V does not feel alone on her walk. Always, always, we desperately pray for her pain relief, and her peace.

I carry everythingWe are finding the number of balls we are each juggling, the number of people and problems “carried in our bowls”, as I’ve taken to saying after creating the visual in this post, increasing even more than we knew was possible. We have to purposefully decide to remove from our bowl those people and problems that we no longer have room to carry, as we focus deeper and more urgently on that which we keep in.

We are trying to care for ourselves in this too, and fight back at any implication that we should only exist as players in Vanessa’s story; she is in ours, as we are in hers, and as we all have our own, with none more worthwhile than the others. We try to always encourage everyone to share their story as we tell ours and hers: It is true that we each are but a blip on a speck, in the big picture- but rather than subtracting hope, I find the thought of being so insignificant to the universe to be incredibly equalizing. As tiny specks, we all have our equally-speck-sized stories and they all deserve to be shared and heard.

We are already missing our sister and wife and daughter and friend, while simultaneously loving her as hard as ever in person, even as she slips away from us bit by bit. We honor the old-Vanessa and the now-Vanessa together at every opportunity. We are grateful for each person that lessens the burden of Vanessa and/or us, by their time or company or understanding or acknowledgement or sharing or wisdom or compassion.

Even if I don’t mention Vanessa in a particular post here, even if I go through an entire busy work day without actively thinking of her (rare!), this reality of course dwells alongside every part of me. I see her in the back of my mind when I’m looking at my Myles, comparing his plight as (not-really)neglected middle kid to hers as our (not-really)neglected middle sister growing up. She’s there when Christina and I do something together but without V, the gaping silent hole that is real whether we acknowledge it aloud or not. When we do something as a big family, and it all comes together barely, haphazardly and sloppily, I know we all are thinking how Vanessa was always our planner and organizer and we are struggling to fill that role without her. Every love song that sings “All I need is youuuuu, baby, we’ll be together forevvvvver!”, I think in response, “Ha, well, unless one of you dies, now, huh- and would you still be around if your loved one was reduced to a different, changed person? Where is that consideration in your frilly superficial love song!”

One’s view of life can’t help but be changed when given this experience to live through (or die from, depending on who you are in it).

Still…  always… trying… to choose… HOPE, and OPTIMISM

Be kind, for everyone you meet is fighting a hard battle.I can’t neglect to point out, explicitly in case it gets lost in all of our words, the heaviness we carry, constantly. For every inspiring post we write of finding hope, and for every casual answer of “doing fine” we give when asked how we’re doing– trust me when I say that each instance is a not-easy choice, a message to ourselves, and a purposeful diving into some inky-black BAD to emerge sputtering at the light of the surface with a tiny, tiny grain of GOOD clenched in our teeth. I hope that comes through when we try to write the feeling in sentences. It’s a choice to embrace the light where we can find it, rather than some charmed life filled with nothing but light that easily pours out.

Bravery and hope and energy and gratitude feel so much more vivid and alive when they are so hard-earned.

It currently being October (aka Pinktober), I’d like to list out these ways you can “help support breast cancer” as it’s cringe-inducing-ly often called (I don’t support *cancer*, do you?!), and our one dear Vanessa as well:

  • Most personally close to our hearts: If you are the praying/chanting/meditating/vibing/wishing/healing-energy-visualizing type, we’d ask for you to focus on those two “P” things for Vanessa: Pain-relief, and Peace.
  • Similarly: We humbly ask you to please keep supporting us as V’s support system, even when we don’t have time to update everyone, even when we seem fine, even when we are quiet. It’s easy to forget those who are silent, but sometimes we have no energy to scream Help! even though (because?) we may be drowning. The support is as needed now as when we first found out what Vanessa and all of us were facing. Being there for us helps us, but is also helps Vanessa worry about us less, so we thank you for that just as much. We are so grateful to have kindness shown us when the situation itself seems so mean.
  • Beyond just Vanessa: Feel free to cure cancer, ok? :P Or, barring that quick-fix miracle, donate to someone who just might in the future: any research-focused organization you support. Think before you buy something pink with a ribbon on the box. Investigate where your donation money goes.
  • Be truly “aware” of breast cancer this month, and all months:
    • Insist that any money, research and talk goes toward an actual cure, not just awareness and prevention. (Both are worthy topics and efforts, but are dominating the conversation now, while metastatic/stage IV cancer is left out almost entirely.)
    • Be a voice for metastatic breast cancer, and my sister, and all those living with and dying of this disease. If you see or hear cheerful, pink, vague “breast cancer” conversation or ad copy or event commentary, that doesn’t appropriately mention metastatic cancer (stage 4) – speak up with what you know! If you’ve been following along with Vanessa’s story here, you know more than you might think. :) We are all surely aware of breast cancer by now, but not everyone is aware that is still killing women and men to the tune of 40,000 a year in the US, and that stage 4 is eventually faced by about 30% of all who are diagnosed with an earlier stage of breast cancer. I apologize if this scares you, but it should. We cannot rest on the current approaches to treatment and detection, as well as settling for the current “life-prolonging” measures once one’s cancer has become stage 4 and incurable.
    • Challenge anyone who says that breast cancer is “treat it and beat it”, or that early detection means you will beat it, or all you have to do is be positive and by jove you’ll beat this! Instead, help “beat back” the perception that any person who is dying from the disease has brought it on themselves by not making the “right” treatment choices or being positive enough. Do not stand for this kind of bullying and dismissing of the most intensely suffering of the breast cancer “survivors.”
    • Don’t let the sexy pink shopping disease portrayal distract you from the fact that breast cancer, and all the other less-“awared” cancers, remain ruthless killers of millions of women and men each year.

I’ll wrap this up with an ask from Vanessa herself, one she endlessly crafts each day and intends for you, me, all of us, personally. I think it says a lot that as so many things have to some degree left her (skills, interests, options, likes, comprehension, abilities, power, energy, time), the few that remain have her spending her precious minutes and brain power, along with the ghost of her creative design skills, to hammer her message home, in literally thousands of signs she keeps creating. They are for all of us, with our sometimes thick skulls and un-seeing eyes and ungrateful hearts. It’s a broken-record of the one thing that she grasps tighter than anything else and wishes to share with the entire world, to make her shortened life have meaning and value and impact.

If you haven’t gotten it yet – if you read anything here and still only see her story and message as one you are passively observing from the wings, and not one that she and we hope for you to participate in, to join in, to apply to your own life and then go live the hell out of it (because you absolutely CAN)… then please take in the following personally crafted message from Vanessa as a shot to your heart:

About 100 of the 1000+ signs Vanessa had made, all saying "Live Sincerely" and some with additional words she took from the pledge and our blog posts.

About 100 of the 1000+ signs Vanessa had made, all saying “Live Sincerely” and some with additional words she took from the pledge and our blog posts.

Remember that this is a young woman with considerable challenges using the computer now, so each of these takes her a long time to complete, independently. She chooses or makes the background image (often also having taken the photograph she uses for it, too), sizes and places it, selects the font for the words, chooses what she calls any “key words” to add to “Live Sincerely,” and finally chooses a text color that she likes with the background, before putting it all together in her final saved files. She works on these all herself, all day long, every day.

As Vanessa’s energy and life slip away slowly, this here is what remains, this is what she seizes, this is what she can still focus on, and chooses to spend her time on. This comforts her when little else does. In these signs, my sister is begging you to please see, listen, remember, be, and do.

Vanessa’s story and our hope is as much about YOU as it is about her and us. I’d like to point out how “Live Sincerely” includes that imperative, grammatically…. There is a “You” implied there before the “Live” and it all is inviting you to ACTION and CHANGE. None of us are exempt from following and observing and directing our own lives to the extent I deconstruct hers now here for your reading. My sister’s “live-ing” is slipping away from her as I tearfully watch, but by god if she isn’t dying sincerely now, as well. What could possibly then be stopping us from living our best selves, ourselves?

Happy birthday, sweet sister. Love you to infinity and beyond, forever and always.