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

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.

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

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:

• The Battle We Didn’t Choose; My Wife’s Fight With Breast Cancer: http://mywifesfightwithbreastcancer.com/
• The SCAR Project: www.thescarproject.org/
• Nancy’s Point: http://nancyspoint.com
• METAvivor: http://METAvivor.org
• Metasatic Breast Cancer Network (MBCN): www.mbcn.org
• But Doctor, I hate pink!: www.butdoctorihatepink.com

Day to day life for 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.

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 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.

We 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

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:

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.

A huge milestone passed by recently, rather unceremoniously – July 31 marked a full year of Vanessa being in hospice care. What an amazingly surprising year it’s been, filled with hugs and tears and joy and sorrow. We have been caught off guard, throughout, both by the specific progression of my sister’s health as things have unfolded, as well as from the overwhelming instances of kindness that have graced our lives.

Life has been overflowing and exhausting of late, both from longer-term caregiving fatigue, as well as from all the other parts of life that continue to spin around Vanessa’s story. (Besides the fun we try to have with Vanessa, collectively as the group of us around Vanessa, we’re ALSO living with: Raising 3 active kids! Moving! Back to school time! Work (or taking a leave from)! Our own health issues! Housework! Paperwork! Bills! Trying to remain present to our family, friends, spouses and loved ones!)

There seems to be a point where the pure act of living through this takes all our energy, and communicating about it takes second priority to just getting by. Each of these posts take me hours, to gather the pictures to include, write the content, edit, put everything together and get it out there. Thank you for your patience and understanding when we fall behind in updating here.

Today brings you an update, though, so let’s get to it! :)

The palliative radiation has been complete for about a month, and since symptoms often take time to show up, we’re now in a place to see what we’re dealing with in its aftermath. The wonderful news is that it was a success! Vanessa did really well with the actual treatments, and her “eye bump” is now almost entirely gone, from an external point of view. This has resulted in her eye being able to open back up to a normal level, improving her eye sight. She reports the double vision being just about entirely gone, hooray! So far, I haven’t noticed any loss of eye brow hair, and instead of  the potential (annoying) dry eye side effect we were expecting, she has a perpetually teary eye on that side, which seems like it would be far less annoying. Her skin did redden but is now pretty much back to normal – so all in all, the procedure was definitely helpful and with little side effects thus far to speak of.

Vanessa recently had a liver test done to check into that as a possible cause for her recent bruises, but it came back normal, so I guess we can keep chalking up her bruises to the ol’ clumsy gene we all have! ;) V has experienced some swelling off and on, and that continues.

She has “slowed down” in her eating somewhat, sometimes just not wanting to eat as much, but othertimes I think it’s just a literal slowing down where she only gets through eating say 1/4 of her meal, everyone else is done, and she gets antsy and it ready to leave, so she therefore ends up eating less. There seems to be less cravings in general that she has…  although she still will order one of everything/anything that sounds good at the time! ;)

V’s chin has increased in “numbness”, and the sensation is rather aggravating for her. Sleeping has been a struggle lately off and on, with a lot of tossing and turning as V’s chin bothers her, or other physical sort of sensations (having to pee a lot, back hurting her, etc.). Tracy from hospice adjusted some of her medications (for anxiety & nerve pain), though, and that has really helped. Vanessa does nap a lot more now – she might disagree as they aren’t always formal, purposeful naps, but I catch her dozing off a lot on the couch across from me as we’re working quietly in her living room in the afternoons!

Mentally, Vanessa seems to both continue her changing while staying much the same. Her overall mood has mellowed to generally be what my mom calls “Sweet Vanessa.” Less anger, less frustration, less comprehension, less movement, less participation in conversation. But still getting around (albeit slower), still enjoying herself, still enjoying doing and being and feeling. On a recent day I took about 600 pictures of flowers, and she looked at every single one with me. That care was sweet in and of itself! What really got me, though, was this: Whenever the pictures would “change” -from, say, 13 in a row of some yellow flowers, to then maybe a bright pink one- she would get caught off guard by the change… and consistently make a pure exclamation of “wow!!!” or “so pretty!” or “I love it!!!” When I am feeling low at how reduced her world is compared to what it was, I am grateful for these little reminders that life from her view is still beautiful and full of abundant joys, simple as they may be.

Just wanted to pass along an update on Vanessa’s health today.

Recently what she calls her “eye bump,” a tumor below her one eye, has gotten significantly worse/bigger. This is causing her right eyelid to be half closed much of the time, and it’s also pushing her eyeball itself kind of upwards from where it was.

It’s not causing her a lot of pain and discomfort (although I suspect it would if her pain sensors were working right), but it has been causing her to have some pretty irritating double vision issues. Tracy from hospice suggested than covering that eye with an eye patch would take care of the double vision, so Vanessa’s been trying that out, and finding it helpful so far! She’s still figuring out what she likes with the patches, so far trying both the bandaid-like sticky kind and also the good ol’ string-around-the-head-Arrrrg-I’m-a-pirate kind, too. ;)

The patch has been a welcome reprieve from the double vision, but the tumor itself is a cause for worry. We know that the tumors are likely growing everywhere in her body, and this is basically what we would expect to be happening now, as no treatments are really working to control the cancer in V’s body any longer. However, the location of this particular tumor so near her eye has the potential to cause some serious pain and uncomfortable symptoms down the road, especially if it continues to grow (and as it’s growing quickly now, it seems it would keep going).

Thus, on the suggestion and recommendation of her oncologist and radiologist, late last week Vanessa was fitted for a new radiation mask, yet again. She goes back this afternoon to begin a course of 10 or so daily radiation treatments, targeted on the area of the bump and her eye. They are dialing up a lower dose of the radiation to minimize the damage to her actual eye, while still providing a benefit. So the bump might not shrink (although it could), but it hopefully will be halted in its growth from this treatment, preventing further vision and pain problems. The treatments are palliative in nature, so our hope is for them to improve V’s quality of rest-of-life over not doing the treatments, but we expect no life-lengthening benefits from this course of radiation.

Even with the lower dose of radiation, there will, of course, be side effects from the treatment. On a superficial level, for the next few weeks she will have permanent marker dots and lines on her face circling her eye, so they can line up the radiation equipment precisely right each day. That, of course, will be washed off when the treatments are complete. More seriously, she will likely lose her eyelashes and eyebrow on that side of her face, potentially permanently. Vanessa’s skin may “burn” or turn red in the radiated area. Radiation near the eye like this also results in a cataract to the eye getting zapped. Since V no longer drives, the lack of depth perception from this might not really effect her, but if she is bothered by it, the cataract can be later fixed via surgery.

Billy and Mom and I went into the radiology appointment carrying thoughts and questions around all the pros, cons, side effects and benefits of doing the radiation versus not….  but once we heard all the facts, it seemed like an obvious choice to go ahead with it. The potential next steps of the eye tumor seemed particularly gruesome and uncomfortable, and the vision degradation it could cause would lower V’s quality of life considerably. Of course, Vanessa having to go through the treatments themselves, as well as the associated side effects, was all certainly no small thing to consider, but still seemed preferable to the tumors growing.

V was very agreeable to the plan, as well, although I am not sure how full her comprehension is. It’s almost like she’s been getting treatments and surgeries and taking pills and seeing doctors for so long, that this sort of thing just feels like “normal” to her and like, well, why wouldn’t she do it? ;) But I feel confident it’s the right move, too, after we considered the angles to figure out the least of 2 evils.

I am happy they can do something to stop the growth of the nasty bugger, but it surprised me how hard it hit me to have these conversations and decisions again. It’s hard to be back here again in this life place where Vanessa is doing treatments, having side effects, needing to venture daily into the land of medical care and being a patient and having things done to her. It makes me realize the subtle differences in quality of life that hospice care can support – her normal recent life, by contrast, has been hanging out at home, doing things she enjoys and timing naps whenever she wants, NOT feeling like a patient, and us doing things with her. Going into hospice, it obviously sucks (understatement alert!) because you are aware that treatment conversations are slowing and dying conversations are approaching. But at the same time, hospice really is a freedom of sorts from being so focused on the medicalities (I made up that word) and appointments. Now, though, with this eye bump and radiation, we find ourselves with Vanessa straddling that line, with one foot on both side of the care continuum, living elements of both sorts of lives. Since the radiation is palliative, she’s remaining on in the hospice program while undergoing it, but it’s brought a new combination of feelings- a mashup of the living and the treating and the waiting and the dying.

I’ll update again once treatments are underway over the next few days. During the radiation, she might need to wear this sort of lead eye-protector contact-like thing, which I can only imagine feels weird (if not awful) – so please send good thoughts to Vanessa at about 4pm today! :)

 

What I thought I’d be saying in this update

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

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

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

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

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

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

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

The real update

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

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

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

Mind melt

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

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

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

Switching from a sprint to a marathon

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

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

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

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

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

Heartbreak of change

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

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

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

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

Amazing brain

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

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

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

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

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

What her BODY is telling us

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

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

A lesson and reminder

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

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

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

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

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

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

Thank YOU

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

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

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

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

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

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

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

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

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