Update: August 7, 2012

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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.

Christina, Billy and Vanessa, went to the Delhi Skirts game, and got to try out the shiny new wheelchair!

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 Yaeger, 54 Pleasant Dr, Highland Heights, KY 41076.

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!!!!!!!!!!!!!

Big Boy completed assignment #2; have you yet? Go make Vanessa happy and do it now!

20 comments

  1. Tami Boehmer says:

    This is the one of the most beautiful accounts of love, devotion and amaazing bravery and selflesslness I’ve ever read. God bless all of you and know you are in my thoughts and prayers.

  2. carmen close says:

    just sending my support,love & prayers. although i do not know Vanessa personally i met her through facebook & have been following her story because I am a breast cancer survivor & she is just such an inspiration to me i feel blessed to be able to read about her life. Her way of dealing with all of this has truly changed my life also & I will make a promise to you Vanessa to Always Live Sincerely. You are an amazing Angel to me. May God Bless You & your Family Always.

  3. Melanie says:

    I don’t know what to say other than, I know God is with all of you. Right now. Tonight. Tomorrow and every second until His Will Be Done. So many prayers for all of you as I personally know its equally hard to be a bystander as it is the other. God has so many big plans for you, V. Whether you get to be here as they pan out or watch from above, know that you have already touched millions. Much much love to all of you. I hope you do an outing or two in your tutu.;)xoxo

  4. Amy says:

    To V, a strong woman I may never meet on earth yet has impacted me from a far by your example and will~
    May you know always that “mothering” is a verb…… Meaning “bring up with care and affection” and you are doing just that through your actions, determination and family to many more “children” than anyone could birth. You are clearly a teacher of action, not just words.
    Thank you for reminding me of what matters.
    SINCERELY,
    Amy

  5. Alison says:

    To V and your fabulous friends,
    Thank you for inspiring me & I’m loving your mini adventures :)
    Some people are destined to inspire others for their actions and courage. I’m going to make weed wigs now !!
    If nothing else, to me having breast cancer has made me realise how much time I wasted before worrying about silly things and not living. I’m sincerely living now …

    Sending you all love & hope
    Alison

  6. Shay Sharpe says:

    Thank you for writing such a beautiful, detailed blog and taking such good care of Vanessa. Sending all of you hugs, love and patience. I am still hopeful for a miracle.

    Live & Love Sincerely!

    Shay

  7. Bridget says:

    I second everything Amy said above. Very touching and moving words from Christina and Jessica – thank you so much for keeping everyone informed! We will keep everyone in our prayers!

  8. Samantha says:

    Vanessa, your story has touched my life in such a way I can’t even expain. You have inspired me, and coutless others, and I will be for ever grateful for that. God has a way of using everything and anything to speak to his people and He has reached many through your story. I have learned that I have been blessed with some pretty amazing family and I thank you for letting me see that. I can remember playing with you as kids and always getting the coolest homemade Christmas gifts from you guys (Vanessa, Jessica and Christina) at the family Chistmas parties. I would look forward to the Pipefitter’s picinic every year too. Things have changed and our families are spread out, but I have pledged to “Live Sincerely” and not forget how blessed we all are. Love you Vanessa!!

  9. Sara Eaglin says:

    Words are inadequate to express how inspired I am from V and each one of you. I pledge to ALWAYS Live Sincerely and to teach my children to do the same. Please know all of you will forever be in our thoughts and prayers!
    Love,
    Sara (Mullen) Eaglin

  10. Lisa Hillenbrand says:

    Vanessa, love the weed wigs – could become the next fuxxxK cancer fashion statement! I did my first Live Sincerely post cancer thing – raced in the Michigan Regatta in my single scull. The same one I row in under “Vanessa’s bridge” (the purple suspension bridge). I came in last and felt victorious. I don’t think anyone at the race was happier!

    Thanks for the inspiration. Love and BIG BIG HUGS to you and your family. Keeping you in my prayers.
    Lisa

  11. pascale brady says:

    sending tons of love to Vanessa and family. i have walked the walk and know your courage, selflessness, generosity and beautiful souls. I admire you, send my respects and gratitude, and wish you all strength and fortitude in the coming times. thank you and may the universe be at your side.

  12. Preeti says:

    Vanessa…you are truly an inspiration and I have learnt sooo much from you!….you are in my thoughts and prayers! I am sure your strength will carry you through these testing times…And I pledge to Live Sincerely!

  13. Myrica Cook says:

    I just wanted to say thank you for turning something terrible like cancer into such an inspirational life. I have always been an only child and I see how much I would have been blessed to have sisters in my life. Your family love is beautiful and goes straight to my heart. I care for breast cancer patients when they need breast MRIs and the women I treat would learn so much from this blog. We Would all be so lucky and grateful if we had someone like Vanessa in our lives. Thank you for sharing!! Much love to you all!

  14. Nora says:

    Vanessa, even as a young girl, you were always such a beautiful, caring, talented and creative soul. When you have those sad days feeling as though you missed out on being a mother — please know that you (and your sister, Jessica) were always the #1 choice of most cherished and highly valued babysitters for our family!! The impact of your influence and the creative, loving care you provided became the model for our girls when they became successful babysitters themselves!! :-)

    Taking the challenges of cancer, and all you have endured throughout this journey, and turning them into a springboard for channeling your caring and creative energies into helping others appreciate our own brief lives is just another example of how you are “mothering” us all! Thank you for sharing your thoughts, experiences and example in reminding us all to cherish each moment and Live Sincerely.

    LOVE and HUGS to you and your entire family from Colorado!

  15. Laura and Brandon Smart says:

    We don’t know what to say…WE are so proud to say we know Vanessa. Keep letting your light shine Vanessa. You have always been and always will be the bright light everyone gravitates to. This was very hard for Laura to read because of the fact that her Mom just became a warrior again. But know that we are praying with you and living and loving every MOMENT life has to offer. Thanks for the testament.

  16. dear vanessa,

    3 years ago my husband was diagnosed with a rare cancer, multiple myeloma. i was a hospice nurse for 30 years and always thought i truly believed through my nursing experience that there was no such thing as “the unthinkable”. then last december, i was diagnosed with ST IV metastatic cancer. my husband and i now share both patient and caregiver roles, and i feel truly blessed that we are able to care for one another with a rare and deeply loving appreciation of our life together. sometimes we have been frightened, mostly about what would happen if we were in a crisis at the same time. but most of the time we are happy and so grateful to be able to live life re-invented, savoring every moment with tremendous joy.

    i stumbled upon your blog just yesterday; i read every word you and your family have written. i have never been so touched, so inspired, and in such awe of what your journey has been and of how much you have accomplished and given of yourself to others. your words, the words you live by transcend all struggle, disappointment, fear, apathy, doubt,and defeat. know that you will always be a presence in the thousands of lives of those people who you have so generously and eloquently reached out to.

    i promise with all my heart to live sincerely, to pay it forward to my darling, hugh and to our children and grandchldren. and i thank you with all my heart for empowering us with courage, love, compassion, and living fully and joyfully. love and warm hugs, karen sutherland

  17. Denise vonMillanich says:

    Vanessa, My heart is so warmed and sad.It’s so bittersweet.I know it’s a difficult part of your jouney, and I’m so glad that you and your family have embraced this so well. It makes all the difference. I am with you in heart and spirit.I have journeyed with my daughter Jolene the very same road that you and your mom are on. Jolene didn’t have children neither, they would be motherless now if she did. How heartbreking is that. I am greatful that you and your family are sharing this part of your journey with us. Please keep on sharing…..XOXO MamaBear

  18. Becky Mansholt says:

    Vanessa…..It was so nice to meet you the other day (on the sunny resort of Iberostar), and hear your story. You have made an impression and impact on my life !!! I have the magnet you gave me on my fridge, so that way I can look at it daily !!! I am so glad that I will be able to keep in touch with you through this page, and also I would love it if we could keep in closer touch with e-mail or facebook. I did include my email on here, would love to hear from you soon….Hope you enjoy your trip, hated that I left before you were…Please keep sharing with updates….Love and Hugs, Becky

  19. Kathy Rowell says:

    Hello Vanessa, How are you doing on this fine Thursday. I’m still living sincerely after my retirement form the Army. I get so inspired by you and I read your story over and over to help me. Have a peaceful day. Thank you for being the wonderful person you are that don’t mind letting us in your life….smoches, Kathy.

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