Jess and Christina here, with the latest update on the one, the only, the amazing, Vanessa. Advance warning that this is going to be a LONG one! Feel free to share with anyone who has been following Vanessa’s journey.

Vanessa had another MRI recently, and about a week ago met with the doctor to discuss the results. They were decidedly not good. The cancer spots in her brain have increased in both size and count. The radiologist who read the scan wasn’t able to count them all specifically but approximates that there are 15-20 masses in the brain now. This is in addition to the cancer that has been in her organs, bones, blood and spinal fluid for a while now.

Of course every case is different, but Vanessa’s doctor estimates we have “several months” of time left with V. This is also in line with statistical averages once a patient reaches brain mets stage.

Even though this was not entirely unexpected news, it is still devastating to hear. Because of the tumors in her brain, V sometimes struggles with processing, comprehending and remembering the depths of what she is going through. We are all trying to process the overwhelming truth of this in our own ways, from sad to mad to worried to scared. We are also more determined than ever to make these days and weeks meaningful and focused on what is important to Vanessa.

Day to day, some are good days and some are harder. The tumors have expanded to numerous different areas of her brain, and thus are affecting many different functionalities in her body (memory, thought, vision, etc.), causing her much disorientation, memory losses (especially short term), confusion, “brain fuzzies” as she calls it …aaaaaand they explain why Vanessa went to listen to a recent talk and wrote many pages of “notes” that were like this:

Oh, you didn’t know she was fluent in Swahili? Or could write in IKEA? Or can compose ancient chants? =) V showed us these notes a few days after writing them, and she doesn’t really remember struggling to write or anything at the time; she was just, she thought, taking notes. We teased that it must be her subconscious free-forming cosmic poems that only babies and unicorns can understand, or something!

But seriously, it’s also a really clear visual of the “brain stuff” she often mentions feeling, that sometimes is also outwardly evident, even though she might seem pretty normal for any particular brief moment of time. There is a lot going on in that head of hers that isn’t always obvious to everyone, but when you are around her more than an hour or so at a time it’s getting more and more apparent. She is still physically mobile and mostly independent, but sometimes her brain acts against her and messes with things, like when she falls because she forgets mid-step how to walk, or when she gets a pounding headache just from standing up. Hopefully seeing her notes here helps you understand a bit more the effects she is feeling!

V has also said it’s not so much that she is feeling blank in her head, but instead like she is feeling/thinking more than normal, like there are so many different thoughts and she can’t keep up and it’s hard to sort through them. So if you see her or talk to her and she seems to be quite normal, know that she was working really hard to follow and keep up with you… and probably will then take a much deserved half day of downtime to recover/rest up. She misses feeling like her old sharp self, and the effort to process information can be really taxing to her. However, at her best she greatly enjoys talking to the people who are with her, and we all are glad to seize those moments when clarity presents itself a little better.

Vanessa is settled into hospice care now, and really hit it off well with her primary hospice nurse Tracy, which we were thrilled about. Tracy will be over to visit V at home once a week, plus any more as needed, to monitor her comfort, pain, and health. She enters in all the current data each time to V’s online records at hospice (current meds, blood pressure, etc.), so anyone there can see her data any time we call, even if Tracy is not working then. We can call any time for questions about medicine or anything at all, and there are nurses available to come around the clock if we would need someone to help us with Vanessa’s medical care. There are also home health aides to help with baths, meals, and daily care if V needs it. It’s so comforting to know they are there for Vanessa and us all, even if right now we are not feeling a frequent need for them each day.

One thing you may not know is that being in hospice makes you a big ol’ VIP! If Vanessa decides she needs any medical equipment to help her out, or even just wants to try something to see if it helps, someone from hospice will bring it, to her house, for free, and usually within a day! This past week alone has included a transport wheelchair, bed rail, cane and seat cushion, all of which have already come in handy, so who knows what shiny medical equipment goodies will be next for VIP-V.

Billy, Mom/Sharon, Jess and Christina have been learning how to be the best caregivers we can be to Vanessa right now, with one of us there with V around the clock. Since V has been pretty selective about who she lets “babysit” (as she calls it), the four of us have been sharing the duties. She doesn’t need a lot of medical help right now, so it’s caregiving of the “being present” kind. That way we are available if V falls or feels woozy, for example, and are helping her get the right meds at the right time, getting meals, etc.

On one hand it’s casual and fun, just hanging out and enjoying the time together! At the same time, it can be challenging more from a mental perspective, and also requires a lot of arranging and driving back and forth and getting coverage for other aspects of our daily lives that are being neglected a bit right now. We are so grateful for the assists from Vanessa and Billy’s families and friends, and the patience of all our respective workplaces, in allowing us the flexibility to spend this time with her. It’s so hard, but also such precious time, and we are appreciating every minute.

Billy has also been busy busy busy with logistical and practical tasks, making tons of phone calls, filling out paperwork, sorting out bills and insurance, looking into medical options, and making sure their house is safe and comfortable for Vanessa as her needs change. Not to mention holding down the fort as far as taking care of Reuben, yard work, etc! Another thing he checked into was clinical trial possibilities. He did lots of research and contacted different studies directly, but ultimately this avenue did not pan out. There were a few that V met all the inclusion criteria for, but then was disqualified for having a few of the exclusions.

Besides (of course) that ever-present hope that there will be some miracle cure, more realistically V had wanted to at least see if there was some way she could still assist science in learning more about cancer, its treatment or its cure. She was bummed not to be able to do that, but at the same time it may be a blessing at this point not to have the fear of additional unknown side effects or painful treatments.

Even though it wasn’t in the cards for V and clinical trials, her contributions to science are not over yet! She had also discussed with us over a year ago that she wanted to donate her body to science, in order to help the medical community learn anything they can from her, and in turn to help someone else in their life. She now has gotten in contact with the University of Cincinnati College of Medicine’s research and education program. Vanessa was so excited when she told us (back in healthier days), “Well, I guess I can’t donate my organs, like I always wanted to do, because no living person would want them… {big sigh}! But hey if they can still use my body to research more about cancer, at least there is a little good my body can contribute to the world once I am done with it!”

We’re so proud that she looked at this personally devastating situation and, instead of wallowing in the negative, thought of how in the world to make there be something redeeming out of it for the whole of humanity?! Anyone who knows Vanessa knows this — she does NOT wallow. Whenever one of us mopes or complains around her, she always says something like “Well, what can we do, how can we make it better, how can we fix it?” She’s always been more into actions than words. We can’t fix this cancer, but she is facing her death and making a selfless and beautiful decision that countless other people will benefit from in the future. So inspiring!

Speaking of Vanessa selflessly helping other people, we also had a follow up appointment at the same geneticist V saw at her first diagnosis. We had a good discussion with the genetic counselor at Children’s about advances in genetic tests since her last tests, and V ended up giving blood to be tested in a brand new complete breast cancer panel. Even though her original tests 5+ years ago came back negative (BRCA included), there are multiple parts of our family cancer history that suggest the cancer could have a hereditary component (her young age at diagnosis, lots of cancer in our family tree, etc.), so it is definitely worth retesting with the improved gene information. The full panel will check for many different genes, including a new BRCA1/2 check but also some other genes that recently have been linked to breast cancer and other cancers, that all have some implications on breast cancer risk.

She’s a trooper giving all those vials of blood, because essentially anything we may (or may not) find there will be of no help to her at this point. But through her results, she could help her blood relatives. If there was a mutation found, we (Jessica & Christina) and possibly other family members/cousins, etc. could be tested for the same mutation. Also, if the test finds something, it could provide everyone who loves her with some sort of reason why this happened to V. However, it’s actually statistically less common that there is a genetic component to her cancer that science can identify at this point. Realistically the hard truth might be that no person or test can give us the answer to that question.

Another hard truth that V has been grappling with lately is not getting to be a mother. It’s the thing she thinks about most in those times when she lets herself go to a sad place. Cancer has affected her life in so many ways, and each different item is another separate loss she has to wrap her head around. Not only has cancer taken her (original) breasts, her uterus, her ovaries and her hair many different times, but it’s also taken from her less tangible things like her innocence, her health, her ability to drive, her strength, the chance to have a normal cancer-free marriage and being able to be a mom – and will ultimately even take her life. We have a lot of talks about what could have been, and what should have been. It’s a sadness that will probably just persist. Being an aunt is not the same as being a mother, and can’t possibly replace that equally, but V is a wonderful aunt to Jessica’s boys and has really played a large caregiver role throughout their lives. And Max, Myles and Leo just love her to pieces, so that does help console her when she is down.

Please know that we are so grateful for all of the love and support we’ve all been feeling, even if we aren’t immediately able to acknowledge it or tell you thank you. It’s also sometimes hard to clarify what help we even need, because the situation changes day-to-day and what might be helpful today won’t be helpful next week. We realize that to some extent we’re just focusing on maximizing our time with Vanessa and haven’t been able to delegate, plan, process, or even think as clearly as we’d like. We ask everyone to understand and respect that Vanessa has told us she wants to focus her limited energy in small and deliberate ways rather than spreading herself too thinly among too many people and projects.

We will keep thinking about ways you all can help us through the logistics, but there are some things you each can do any time that we know will make V feel happy and loved!

1. TAKE THE PLEDGE: Go sign the Live Sincerely pledge at www.thelivesincerelyproject.com/pledge. Vanessa checks the count ticker and reports back to us every single day! Once you’ve signed it, please consider spreading the word, too.
2. TAKE A PICTURE: Complete assignment #2 on the Live Sincerely Project website (http://thelivesincerelyproject.com/2012/07/14/assignment-2-introduce-yourself/) and send us your photos of yourself and your “Live Sincerely” sign. It’s so awesome to put faces with all the people trying to live meaningfully, and Vanessa spends a lot of time flipping through pictures and enjoying everyone’s creativity. The pictures also help her remember everyone when just names aren’t jogging her memory.
3. TAKE A MINUTE TO REACH OUT: Send V a note, card, email, or message with a funny story from the past, pictures, etc. They help Vanessa reconnect with herself and know how loved she is. Or you can even just let her know what you’re up to — she genuinely likes your cat stories, baby pictures and random tidbits. Please know that even if Vanessa only responds briefly, uniquely, or not at all, she does read every single one, often out loud, and revisits them frequently. =)

We thank you so so much in advance! These things are not hard to do, and you may not feel you are doing much, but they are what currently mean the world to Vanessa.

For those who’ve asked about things to buy or contribute, we’ve thought about it and Kroger gift cards would be helpful in a variety of ways to Vanessa and all of us with currently rearranged lives (for groceries, gas money, etc.). If you see one of us (Billy, Jess, Christina or Sharon), you could just pass along, or you can mail things to Jessica at {deleted}.

We know that lots of people love Vanessa and that it won’t be possible for everyone to get as much time with her as they’d like. We are doing our best to accommodate what Vanessa wants to do each day and what she is physically able to handle. She needs her rest and gets overwhelmed by too much stimulation or conversation. Know that she is so grateful for all of your support and love and for being such important presences in her life! None of us know exactly what the future has in store, but know that every one of you has played a valuable part in her story. Your past and present interactions with Vanessa and your constant support mean a lot to her now and will continue to give strength to all of us going forward.

For the meantime, we’re creating as many mini-adventures as we can, in bits and pieces between naps and downtime. Vanessa is greatly enjoying spending time with her nephews, and hearing all the goofy stories about them too. Us sisters all went to the Pompeii exhibit at the Cincinnati Museum Center last week, and we even successfully maneuvered the rental wheelchair around priceless artifacts without breaking anything! Billy has been helping Vanessa sort through old pictures and identify all of the faces, and the two of them have probably now been to every single restaurant in Delhi. (Vanessa giggles with glee every time she gets to use her handicapped parking permit or ride around a store on a motorized cart.) Dad comes over every Wednesday to hang out with V and Reuben, whom he calls “The Rodent.” Mom is having a field day organizing kitchenware in the new IKEA cabinets and bumbling around various places with V while they hold each other up. The Tiemeier task force has been in full swing, with Billy’s parents and brothers helping Billy with painting, yardwork, sanding, odd jobs, and bringing Vanessa her beloved mochas. Everyone has been watching Team USA go for gold these Olympics, and Vanessa is particularly excited that her hair is growing back in! We also discovered a splendid form of amusement in the weeds that grow in the gravel by the front door…

Weed wigs! Yeah, we’re sexy and we know it. =)

These days are all really, really, really hard and exhausting. We also know that given what we are all facing, there is nothing else we’d rather be doing right now with our time. Speaking for Billy, and both our families, we are so grateful to have this time with Vanessa, and for all of you.

Love,
Jess & Christina

P.S. Vanessa told us to remind you to LIVE SINCERELY!!!!!!!!!!!!!