Cancer is Ugly / Life is Beautiful

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When Vanessa and Christina and I were little, we would sometimes play “fashion shoot.”

To be specific, Vanessa was my always-willing model, and occasionally Christina would succumb to my oldest-sister domineering and also play along with us.

Circa 1992(?), I present to you model Vanessa (at about age 11), with Christina (about 9 years old) assisting me in outfits, hair, styling and backdrops (she would likely say I should have to claim all that as my own, since I just bossed her around), and poses and photographs by me (about 12 years old).

Counter clockwise from top left: Christina and Vanessa faking a discussion on which hair product to use (I remember making them do this for the picture); Christina and Vanessa looking through my horrible early 90s clothes for trendy "outfits"; Me doing V's make up and hair - her with the model lips, me with the awesome glasses and white scruchie. :)

Counter clockwise from top left: Christina and Vanessa faking a discussion on which hair product to use (I remember making them do this for the picture); Christina and Vanessa looking through my horrible early 90s clothes for trendy “outfits”; Me doing V’s make up and hair – her with the model lips, me with the awesome glasses and white scruchie. :)

The styled fashion shots! Oh. my. gosh. The one on the right has a pretty cute outfit and nice hair/makeup, actually (go 12 year old me!) - the one on the left, please note the walkman and practically white jeans, ha! Vanessa was beautiful still though, despite being awkwardly reading on her propped up knee and standing in front of a sheet we draped over my closet door.

The styled fashion shots! Oh. my. gosh. The one on the right has a pretty cute outfit and nice hair/makeup, actually (go 12 year old me!). In the one on the left, please note the walkman and practically white jeans, ha! Vanessa was beautiful as ever even still, though, despite being awkwardly “reading” on her propped up knee and standing in front of a sheet we draped over my closet door…


I was reminded of those younger days, as the same scenario has played out recently. Starting at the end of last year, as the effects of her stage 4 brain mets really became apparent, Vanessa has expressed a lot of interest in documenting her outfit/hair/makeup/jewelry on those days she feels particularly well dressed. Sometimes she takes her own pictures. Sometimes she requests Billy to, and Billy readily obliges in taking the picture Vanessa sets up, usually of her standing head on in front of different walls in their house.

The result is gems like these, which, despite sometimes not necessarily being in focus or particularly flattering, Vanessa posts all over facebook to proudly showcase every detail:

These are included in chronological order, clockwise, starting in the top left. You can see how as different steroids and medicines are added or stopped, there are visible effects in her pics such as eye(s) closed, sort of a half smile, and a constant lean to one side. Vanessa has also cycled through various make-up applications, such as cat eyes, all pink, eye shadow that is the exact same color as her clothes, etc.

These are included in chronological order, clockwise, starting in the top left. You can see how as different steroids and medicines were added or stopped, there are visible effects in her body, such as eye(s) closed, sort of a half smile, and a constant lean to one side or the other. Vanessa has also cycled through various make-up application trends, such as exaggerated cat eyes, all pink, eye shadow that is the exact same color as her clothes, etc.


However, this one particular February day, Billy was out running errands and I was working at their house. I watched V moving furniture out of the way to clear some wall space (she likes to have a solid background for these pics). I realized what she was doing and offered my assistance as the photographer, and she allowed me to do it. In an effort to produce some more flattering pictures than the usual ones, I spontaneously decided to approach the “shoot” as my old “fashion director” self of childhood.

I first zoomed in on each detail she requested I capture (including her 2 pairs of earrings in the same hole, check out that creativity!):
Vanessa glamour shot details

Vanessa preparing for glamour shotsThen she got herself situated, as I sneakily took an un-posed shot, which ended up being one of my favorite pictures from this day. I think I like it because I can almost pretend she is “normal” there.

Then finally, we took something like 50 pictures of Vanessa, against that brown wall in a corner of her living room. I tried directing her body into more dynamic poses, and having her tilt things this way and that… sometimes just to counter the natural lean (falling over!) her body does on its own these days. I’m certainly no professional, but I took a completely on-the-fly, no-idea-what-I’m-doing but very sincere swing at it. In the end, I actually coaxed some normalish smiles out of Vaness, and I think (HOPE) she felt truly beautiful as we looked through the results on her camera’s screen a little bit later in the day.

Vanessa glamour shots

When she saved the pictures I took that day to her computer, she named the folder “glamour shots”. This makes me insanely happy. We did have fun taking them, too:

Some outtakes! Falling over, making faces, with me, and Billy jumping in on the modeling action when he got home in the middle of the "shoot". :)

Some out-takes! Falling over, making faces, with me, and Billy jumping in on the modeling action when he got home in the middle of the “shoot”. :)


That tiny beautiful moment that day illustrates a truth I believe: Life is beautiful.

Another truth, though, is this: Cancer is ugly. Really, really, super, horribly, awfully ugly.

I believe that being able to see the beauty in Vanessa’s story is such a hopeful, helpful skill and practice. I am glad that I am able to look past the ugly to find purpose and lessons and beauty. I truly do see that. But, seeing the beauty doesn’t take away the ugly parts, or cover them up even. I don’t WANT to cover up or forget the painful and hard parts of Vanessa’s story, nor bury them in a heaping pile of “inspiration”.

Vanessa’s struggles, and our struggles, are a real part of her story, too. I am so sad and angry that this is happening to Vanessa. I mourn the future Vanessa will not get. I hate cancer and what it has done to my sister, what it has taken from her and all of us who love her. I wistfully think about what could have been, should have been if the world were fair. In my darker moments, I am jealous of people who “get” to “keep” their loved ones to a ripe old age. I am frequently sob-the-whole-way-home-from-her-house sad, and pound-away-at-the-keyboard-writing-for-hours mad. I wonder what Vanessa 1.0 would think about Vanessa Now.0 and the life she leads, the future she faces. I miss MY Vanessa, the one that wasn’t well-known, or interviewed on TV, or popping from one cancer event to another, all the while with cancer eroding her memories, dulling her personality, hurting her body, sapping her energy, reducing her functioning day by day in a slow march. Cancer is UGLY.


I keep going back to old pictures, because I hope to keep a balance in my memories of now-Vanessa and then-Vanessa, so this time and this Vanessa is not the only way I remember her. When I don’t revisit Vanessa 1.0 in my head for a while, I will actually gasp out loud when a memory or picture of how she WAS comes flashing back. People have told me that once there are no more new memories made, no more “now Vanessa” for my brain to reference, then the before/after and the old/new memories will balance back out, with the good times of old AND now Vanessa staying top of mind. I hope so, and I think that seems likely.

But for now, I feel the need to make sure people see not just the now Vanessa, but the “real” one too, from pre-cancer, pre-mets, even just pre-brain-involvement. My heart breaks to look at this Vanessa 1.0 collage, but I hang on to these smiles and goofy faces and many memories SO tightly to make sure they don’t leave:

Vanessa 1.0

Vanessa 1.0! I may have gotten a few out of order, but this is fairly chronological, going up through her stage 4 diagnosis before the sh!t really hit the fan.


The last thing I want is for anyone to think that I only mourn the loss of Vanessa’s “looks” or her changing body type. I mourn every single one of the losses, and would take Vanessa looking any way at all, but with her clear mind, any day of the week. Pictures, though, still tend to be the easiest and quickest way for me to portray a visual of the deeper, more fundamental change/loss I’m trying to convey.

It’s also a fact that Vanessa has always been beautiful, and very much cared about presenting herself flatteringly, so I find myself sometimes absorbed with concern in this area now. I think about how Vanessa 1.0 would have never, ever been caught dead in some specific clothes, or with this hair styling, or with quite that much sparkle going on all at once. And I wonder, would she want me to stop her now self from leaving the house in certain outfits, or posting certain pics on facebook?! I can almost hear the old Vanessa saying “Oh my gosh! Do NOT let me wear that! That is way too much pink!” But Vanessa is currently trying to find her way in the mental space that cancer has left her with, and the elements of this “glamour” still speak to her, so that seems to be the current V reality I want to honor, too. I finally have accepted that it seems right to help Now Vanessa feel beautiful and treasured in this time, while telling the story of Past Vanessa, too, and hope it all balances out. I hope she would agree if she could comprehend this dilemma. I’m so glad she looks in the mirror and just sees beauty still, even as I am cognizant of so much more whenever I see her.

[This seems a good time to take a quick minute to express our sincere gratitude for all the folks who make very kind comments on V’s outfit pictures on facebook, in person, etc. I sometimes have to take a deep breath when I see a new batch of pics go up, and take a step back to compose myself again – and in those moments it never ceases to make me tear up when I see the comments come pouring in. “You look like a princess!” “What a great belt to show off your small waist.” “That purple scarf is just gorgeous, Vanessa!” You have no idea how meaningful it is to have people understand her motivations and meet her where she is, even in those brief moments when I am too in pain or shock to do so myself. Thank you from the bottom of our hearts.]


Beauty is truly a squishy, elastic thing. Some days I just find it missing. I miss the beauty of Vanessa’s words, thoughts, intelligence. The world is missing out on the beauty of her graphic design talents, and Blustery Day Design is missing 1/3 of our talent and passion and enthusiasm. Vanessa’s friends are missing her beautifully sincere concern for them, the authenticity and care she brought to their friendships. Her family, immediate and extended, misses her compassion for each one of them, her honest desire to help in any way she can. Billy is missing his wife as a peer on his journey, the beautiful family they won’t have together. I miss every single day the beauty of Vanessa’s easy laugh, quick sarcasm, wit and determination. CANCER IS UGLY.

Other days, I do see beauty all around. It’s there when Billy puts on his model face to help Vanessa feel goofy and normal. It’s there when Vanessa spends 4 hours getting ready and then descends down her steps in a perfumed haze, with 8 pieces of jewelry and a satisfied smile on her face. It’s when Dad hugs Vanessa and V tells him he is the best hugger ever and he just grins. It’s there when Mom takes V’s hand and they move together through a crowd in perfect harmony. It’s beautiful when Christina pets her head (trust me, V loves it!) and sings her songs, and Vanessa tells everyone that Christina‘s band is the best in the entire world, and really means it. It’s there when friends and family visit and write and send pictures and love. LIFE IS BEAUTIFUL.

It’s not the whole beauty I wish for Vanessa, nor the expanded, full, rich kind she deserves, but it’s real and true just the same. I am glad when I can see it, and when I believe Vanessa feels it.

In the end, the ugly and the beautiful, for each of us, sit side-by-side. Neither is lost in, or removed by, the other. The ugly sharpens our edges to a stark contrast, while the beauty adds a hazy glow of light that diffuses and softens. Together they are a truthful portrait of the duality that is life.

Beautiful Vanessa

Beautiful Vanessa

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15 comments

  1. Christy says:

    Always beautifully written and an amazingly honest potrayal of your situation. I am always impressed with your way to articulate life for your family. Thank you for sharing with those of us who don’t know Vanessa but are inspired by her and your entire family. I can remember the day she friend requested me on Facebook (she went to school with my husband) and I knew I recognized the name hearing about her story from the beginning and I knew I had to say yes! Thank you for letting so many of us be a part of her and your lives. I love that she feels beautiful and dresses up fancy for photoshoots. Who doesn’t love a good photoshoot??!! especially when you guys did this when you were younger!!! :)

  2. Becky Mansholt says:

    Vanessa…..I absolutely LOVE the pics..especially the last one. You are beautiful, just like the day I met you at the pool in Cancun !!! I loved being able to meet you, have you tell me your story, and taking in the sunshine laying next to one another chatting !!! Wouldn’t it be GREAT to be there now !! (been very chilly here in IL) I enjoy the updates on you and everything your family is doing !! Take care..think of you often…(everytime I get into my fridge !!! That is where I have the magnet you gave me!!) That way I see it daily and it reminds me of you, our wonderful afternoon, and to live life sincerely !!! Tell Billy HI also !!!

  3. Scarlett Bradford says:

    Vanessa absolutely radiates beauty!!!!!!! I am for adding everything sparkly in the jewelry box if it makes you happy!!!! I want to be seen from outer space!!! There isn’t enough sparkle in the world for her to add to an outfit to match the inner radiance shining thru!!!!! Swarovski crystals wrapped in sequins and sprinkled with glitter just look a little average in comparison! Go Vanessa!!!!!!

  4. Stephanie says:

    Thanks for sharing all the photo shoot pictures! She is just as beautiful now as I remember her in highschool. I especially liked the collage you put together!

  5. Betty says:

    Vanessa is beautiful and inspiring as is your entire family. Loved your pictures, story and appreciate your honesty in this portrayal of the ugly beast that is cancer. God Bless you all.

  6. linda herms says:

    And so once again you bring me to tears. Many good tears because of the impact you and your family has made on my life and so many others. I babysat 2 of my 3 grandsons last night and because your life motto is now on the tip of my tongue I didnt care if they ate all their dinner. They stayed up a little late.One of them ate too many candy red fish! The other one took his first three steps alone to his brother.We all played with one plastic baseball for an hour, it became a soccer game, football game, a brother chasing brother game.We all have our own pile of “crap” I am so grateful mine is not cancer. I believe each of us has a purpose here, to be in the universe to do something important.You and your family have already done something great,I am so sory though that it has come with so much pain and sorrow. Jesus has promised us that our rewards are not of this earth. Try to believe that and know that. He is holding and guiding each of you. And through you He is teaching us what is important. Love to you all!! And would V like a special new box of makeup and jewelry???

  7. Tami Boehmer says:

    I think the photos you took of Vanessa are beautiful. I really didn’t get to know Vanessa that well until she had stage IV cancer. She always seemed quiet to me. If there is beauty in this ugliness, for me it would be the way Vanessa expresses herself in such an innocent, open way. When she came up to speak at the Karen Wellington Foundation, she was standing by Billy. She spontaneously said, “I love you.” Maybe he looked a little embarrassed or gave a little laugh because she said, “Well I do!” It was so sweet and genuine. I do think Vanessa looks like a princess. Her beauty shines from within as she shares her gifts with others. Thank you for sharing your gift- of beautiful expression of the unending love you two share.

  8. Share Lorentz Niederbaumer says:

    I was very inspired by Vanessa at the Luncheon for the Karen Wellington Foundation & her ability to “LIVE IN THE MOMENT”.

  9. Tammy Petty says:

    Your sister is beautiful! Having just completed the journey of lung cancer with my precious sister, who had a smile that touched lives til her last moments I truly understand everything you have shared from your heart. Treasure each moment, each smile, each laugh and each tear for they are the blessings of the journey.

  10. Mary Pat Clark says:

    I have great memories of all you girls from when you were kids. Vanessa was always quiet, but was always dressed very nice. Even as a kid, she had a great fashion sense. I never knew how play clothes could look sooo good. I hope and pray that the pain has eased up some. I will continue to pray for all of you. I agree with what Linda said about your writing serving a purpose for those of us not going through this journey at the moment. We all have things in our lives that we wish were different, but all we can do is hope and pray for the best. Love you guys and will continue to keep all of in my thoughts and prayers.

  11. Karen Flach says:

    Your family is craZy, brave and beautiful. I met Vanessa at a conference almost 2 years ago. She showed me some of her art work and I was in awe of her life story and her talent. Her courage and attitude about living each day are a blessing. I wish you such peace and the gift of sweet memories as you release Vanessa to God. Love always leaves a legacy.

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