Seeing the world through pink lenses

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imagesOnce the Big C comes into your life, you can’t unsee it.

All of a sudden, it’s everywhere… Convenient movie plot twists. Beloved neighbors with a diagnosis on Friday and surgery today. Connecting with a woman younger than me with a reoccurrence / metastasis at support group, and then hearing she passed less than a month later. Immersed in my cancer coaching training with The Cancer Journey, I’m volunteering to listen, to see it all, to learn. I hear about the destruction of lives and families, of bodies and body images, of struggling minds and hearts.  I hear so many stories, even when I’m not looking for them.

Cancer sucks. So why do I willingly surround myself with it? Especially when I’m healthy and working hard to stay vibrant in my mind and body?  When Kev and I are working hard to move past cancer together,  and release the caregiver/patient roles we lived in for two years?  We ask ourselves, sometimes… But I know why.

People can be so beautifully real in the middle of this mess called life. Cancer cuts right through the bullshit. It invite us to reconnect with the core of our being, with our deepest WHY, with who we are, with what we value most. The amazing tribe of people who stood with me, who truly believed in me during that vulnerable and powerful time made it possible for me to be here now, with a little something extra to give back…I know without my amazing husband by my side the life we fought for- this lovely messy life we have- wouldn’t  be as sweet.  Recent studies say couples are more likely to divorce after the wife has a serious illness like cancer than when the husband is ill. (No studies for same-sex couples yet, but I’d be interested in the data;-)

It’s my dream to offer cancer coaching retreats, for women with breast cancer and their love partners…to focus on post-traumatic GROWTH, for the cancer warrior and her caregiver, and for them together. Building a new normal as a couple after cancer together is key. I’ve been searching, and the resources (and recognition for the need for them) are pretty slim.

life-isnt-about-waiting-for-the-storm-to-pass-its-about-learning-to-dance-in-the-rain-quote-2

Of course, since it doesn’t really exist, Kev and I want to design it. We’re good at building a bicycle built for two as we’re riding it.  First we need live it ourselves, and move through it. And keep on keepin’ on moving through it.

We’re in process, and because we’re keeping it real, it’s not easy. Totally worth it, but damn. Did I mention it’s not easy?!

We also realize we also need breaks from cancer, so we’ve been in weaving special events and meditative quiet time reconnecting too. Joy and silliness with friends, and playtime on purpose.

Kev would be an amazing co-leader, co-designer and co-conspirator for our retreats… and he’ll connect deeply with the process of Caring for the Caregivers, and giving them tools for self-care and communication. It’s exciting to dream and plan…

I know we have a ways to go, as I want these retreats to be life-changing for all.  I know what worked for me, and what I want to do for us all. I’ve been visioning the right vibe and and journaling to build deep and meaningful content. So immersion is crucial, as I’m laying a solid foundation to build the dream….and practicing being grounded in health and positivity means I can keep listening and learning, and finding beauty in the mess.

jan-feb-work-in-progressSo, brilliant readers:  What would YOU like to experience in a healing retreat, focused on joy,  coaching and personal growth?

If you have a connection to cancer, what would you want to focus on, or achieve/experience yourself, with your partner, as a couple?

I’d sure love your ideas- you never know what seeds you might plant in my heart, or how large they can grow!

Blessings for a healthy, joyous and peaceful 2017

 

 

 

 

 

 

 

 

 

Hey TNBC tribe-webcast for you and your loved ones!

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Hello TNBC Tribe, just wanted to pass on this webcast specifically for caregivers of TNBC!

http://www.cancercare.org/connect_workshops/549-caregiving_triple_negative_breast_cancer_2016-10-26

Wednesday, October 26, 2016, 1:30 – 2:30 pm, Eastern Time REGISTER NOW

Registrants can listen in live over the phone or online as a webcast.

Kev and I will be listening in, too;-).  The stress is still real, and we’re still looking for tools, even after treatment…a bit of a surprise to both of us, though normal, according to the experts. Thank goodness for those experts!

Coping with the Stresses of Caregiving When Your Loved One Has Triple Negative Breast Cancer

I’d Rather be Breaking Plates…

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I’d Rather be Breaking Plates…

A long time ago, someone made me a license-plate frame that said, “I’d Rather Be Breaking Plates”…   I got some strange looks driving around, though that might not have been solely from the words on the back of my car.

I wasn’t prone to big fits of pique where I’d throw the crockery (at least not very often;-). I wasn’t Greek, either, though I’m not sure if Greeks still do toss their plates down after a particularly fulfilling dinner…or if they ever did.

No, I was all about breaking plates for therapy. Art therapy, specifically- Pique Assiette, or broken plate mosaics. There was unbelievable stress in my life, and I wanted – needed – to do something destructively creative with it.

mosaic bunnyIt was the mid 1990’s and you couldn’t go anywhere without stubbing your toe on a colorful stepping stone, decorative rabbit, mailbox or kitchen table. They were astonishing, whimsical, festive, and I was completely hooked.

I was attracted to the mindful attention to detail, paired with the freedom of physically breaking apart what was, and gluing back together what could be in a creative game. I was playing with possibility, on all levels. I got out of my head, and made time and space to create with colors and shapes that pleased my soul.

Breaking plates became fun, and necessary for my mental health. I went from a smash-and-grab approach, with a hammer and paper bag, to using tools which made precise and calculated de-construction possible… Anyone who knows me from that time might see parallels with my emotional process, searching for and practicing with tools and creativity to fix what had blown up.

I needed a break, literally. I was going through a pretty nasty divorce for even nastier reasons. My daughter was just starting school, and I was finishing my college degree, and working full time to pay for it.

mosaic bitsThose late nights after all of our homework was done, while she slept and I couldn’t, those were the hours I needed to connect with my shattered spirit. I wanted so desperately to re-construct my life. To take what was broken and make something beautiful from the pieces… To let inspiration guide me up and away.

 

In the end, friends were gifted my art-therapy creations, and I moved on, mentally and emotionally. I had found my aliveness, my spark again, and was making something mosaic heartsbeautiful from the broken pieces of my life.

I’d laugh with rueful fondness whenever I encountered one of my projects (usually collecting dust in someone’s backyard), but I knew the process was more important than the product. The utter ridiculousness of playing with my hands and creative spirit in dark times had gotten me through them.… I moved on, and I moved away, and my plates and tools and projects just didn’t fit into the moving van or my new life.

Fast-forward almost twenty years. I’ve got my degree, and my daughter is past college. I’m married to the love of my life, running a successful, fulfilling doula practice, surrounded by amazing friends…life had challenges, but I was the happiest I’d ever been.

Then my mom passed unexpectedly, my dad moved in with us, and we began hospice care for him at home… A year later, I was diagnosed with breast cancer, and every aspect of our lives- emotionally, financially, our relationship, our future…all broke apart. Then my dad passed… It was a deep, dank hole and the climb was steep, to give you the short version. We were lucky. I responded to double mastectomy, chemo and radiation, my sweet husband and I stuck through it together, and dear friends and family pulled us out and into the light.

mosaic mirrorI’m through treatment now, just follow-ups and prevention. My health and my hair are coming back, I’m slowly learning how to balance the work I love with self-care and a focus on joy in the moment. My husband and I are working towards post-traumatic growth, together and in our own lives… It’s harder than we thought, but we’re taking the busted pieces and cementing them back together in new and beautiful ways.

Even though the circumstances are completely different, I feel similar to the way I did in those dark times twenty years ago. I’m missing that spark of joy I used to wake up with, before cancer. To open my eyes and feel truly alive, just because I am…

I’mmosaic mirror bits looking for that muse within myself again- there’s plenty of external motivation out in the world, though there’s heartache too. I have to choose, every chance I get, to reconnect with what fills ME up instead of what could tear me down… To reconnect with what feeds me, not eats me.

I’m craving innovative re-construction, to physically put the puzzle of my life back together. I’m going to nurture and blow lightly on that spark of inspiration, to create a revolution so bright in my heart nothing can snuff it out.

mosaic mirror ballMaybe I also need to break the shit out of some plates… after all, one person’s birthday gift can be someone else’s art therapy, right?   Process, not product, as the mantra goes.

Let me know when your birthday is…and if you want some wabi-sabi crap from me in your back yard.  I’m in process again.

You’re welcome.

 

 

 

 

 

 

 

 

 

 

Two years ago today…

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Two years ago today…

August 6th, 2014…two years ago I got diagnosed with breast cancer. For me and others with TNBC, the highest risk of re-occurance is within 5 years of diagnosis, so this healthy first year post-treatment, with no evidence of disease (NED) is a success and a relief for us both. Anniversaries are perfect moments to pause, reflect, re-prioritize, and vision…be it a birthday, a new year, or cancer.  Add something sparkly to your glass and loved one’s to share it with and you’ve got a party, even when the occasion being marked sure didn’t feel like a celebration at the time.

We got to mark the occasion last night with wine lovingly brought by dear friends, and then we shared another bottle from our trip-of-a-lifetime 6 weeks ago to Italy.

 

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Venice, Italy, with Kev and Antoinette, June 2016

We visited Kev’s Sicilian family, and brought his mom Antoinette to meet her first cousins – it was incredible.  On the night Kev and I met 13 years ago, I joked he should take his mom to Sicily and I’d jump in his suitcase… Without cancer re-prioritizing us,  we would have kept postponing it. I’m so happy we didn’t;-)

 

 

 

We’re also remembering my sweet dad who passed last July, and marking what would have been my parent’s 56th anniversary on August 4th, also  the date we buried them with military honors last year in Golden Gate Cemetery.

dad cheers

I still can’t believe it’s ONLY been two years, since cancer/ treatment, and only one year since my dad passed- I feel like I’m just walking out of a crazy movie where the plucky heroine finds out she’s a lucky super-hero with super healing powers, but only after fiery car chases, drug-trips, fighting tiny dragons with her own blood, losing both her parents and learning how to be strong without them, facing challenges that threaten to pull her away from her lover/knight, fighting off their common enemy together, and then ending the show with a magic carpet ride to exotic locations. Academy-award nominated feel-good drama of the year!

Except for the car chase, it’s all true. I’m glad to be out into the sunlight, and back to ‘real life’. I know my life is changed- today is a day to pause and remember what we went through to get here…and I could NEVER have gotten here without all the love in my life. Love is my priority now.

Self-love, and not seeing it as being selfish, just self-sustaining. Loving my new body after reconstruction and doing the work to be strong and healthy as possible. Loving myself to be vibrantly healthy, and all that means, inside and out.

Loving the people in my life FOR who they are, and AS who they are…and choosing to see the best in them, and in myself too, even when we all fall down.  (I can embrace the contradictions, too)

a good lifeLoving the lessons I learned throughout the shit-storm of the last two years…and washing the stink off, too. (No mud, no lotus, right?)

 

My sweet husband and I are doing some sort of ceremony / ritual to mark today’s importance.  I don’t know what it is, yet…but it may be clothing-optional at some point! (Wait…Did I just write that out loud?)

All I know is I’m officially asking him to tender his resignation as my champion care-giver through cancer. I know we’ll be forever changed, but we’re leaning into post-traumatic GROWTH now.  A year ago, on the one year anniversary of cancer diagnosis, and just 2 days after burying both my parents, there was no way to do that.  To even do more than dream about positive growth after the f’ed up circumstances we’d been floundering within, honestly.  We did a great job, in the moment. I mean, phenomenal coping skills were used by all- it was a terrible time. 

I’d like to quit that excellent level of coping now. I’d like my sweet husband to feel like he CAN quit taking care of me at that level- because I’m capable enough, and strong enough to take great care of myself, with enough left over to take care of HIM when he needs it.

I’m not feeling as strong or as capable as I did 2+ years ago, but good enough. I’m not at 100% yet- I’m running at about 80% capacity right now, and I know it.  (Self-love, baby…I know chemo-brain goes away, and my body wants to keep healing and getting stronger…I just keep reminding myself to be patient and keep moving forward. IT GETS BETTER is my new mantra!)

Moving forward feels good, one step at a time…

that'd be greatI attended my 500 birth as a doula last month…and I am helping vision and construct a new sustainable doula team model to keep serving birthing families well but not burn myself out…or subject my body to stress and immuno-compromising nights without sleep and sustanence. I love the team of doulas I’m woking with and feel so blessed we get to keep doing this work without killing ourselves in the process….

be in the moment TCJI’m helping develop promotional outreach strategies for The Cancer Journey, and starting their Cancer Coach training next month… It was exactly two years ago today I asked, “Where is my cancer doula?!”    Well, I found a tribe of cancer doulas, and I’m going to be one, too.   (www.thecancerjourney.com)

Two years seems like a lifetime ago, and yesterday. I still can’t believe it all happened…thank you for sticking  with us. It’s been a hell of a ride, but we’re about to get off this huge roller coaster, and try some more scenic routes.

Ready for  a kayak on calm waters, anyone?  I’ll bring the snacks.

Being able to give back and move forward  feels like a gigantic move in the right direction…  XOXOXO

 

 

Dee- That was Then, This is NOW

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Dee- That was Then, This is NOW

This is the part of me
That you’re never gonna ever take away from me…

So yeah, I just dropped Katy Perry on you. I’m lame enough that I had to look up who was singing (and even more lame by admitting it here). But by the end of the song I had the radio blasting my newest cancer-survivor anthem so loud the dog jumped into the backseat and covered his ears. Or maybe it was my singing…

Post-treatment limbo sucks. I was never good at limbo anyway (the dance or the purgatory between hoping and knowing…). This prickly place is poking me in all kinds of new ways. I’m growing, I know. Healthier, for sure. But calm, centered, trusting, sure of my self?  Sigh.  Graceful?  Ha. Knowing…Fricking anything? No. Or at least, not yet.

Most challenging is figuring out who I am, how do I define myself, post-cancer.

Am I a survivor? (Doesn’t that imply an end to cancer? Is there ever really an end when my whole life now revolves around making sure it doesn’t come back?)

Am I back to being a full partner, wife, mom and friend again?  (Um…this is a whole ‘nother blog post so stay tuned…;-)

Am I still a doula? (Is that still a healthy vocation for me, physically and emotionally?) Well, let’s tackle this one today…shall we, Dear Reader?

I’ve had some lovely “easy” births, repeats or other second-time mamas since diagnosis, which tend to be shorter and sweeter all around.  Finally, in November I decided I was strong enough to take some first-time birth clients again, but Kev and I agreed I’d only take only two instead of the four births I was taking every month for years before cancer, for a bit. Test it out. See how it felt…

I was a little worried about maintaining my healthy life/work balance, especially since my optimal daily self-care regimen takes so dang long…but after a year plus of not working much it felt good to contribute  financially. I honor the idea of doula sustainability and teamed up with wonderful back up doula sisters, hung out my shingle and booked up fast, thanking my lucky stars along the way.

I had a few longer, more taxing first-timer births, but fulfilling and doable. The pacing was great, plenty of time in between babies to catch back up with my sleep and self-care, and allow me to attend various cancer support groups, yoga and on-going mindfulness workshops. I was getting stronger, in all ways. Kev and I were working on our post-treatment reality, and making mostly forward progress past the constricting caregiver/patient roles. (Again, stay tuned).

Then the shit hit the fan. Three medical inductions in eight days…I spent 27 hours, 24 hours and 21 hours at those inductions, respectively, and answered calls and texts all night long on my nights home. Stars didn’t feel very lucky…though I did try some new tricks with good results (tools from my own personal arsenal of coping methods through cancer) and deepened my practice. Earned kudos, hugs and appreciation from a favorite midwife and various nurses. Made a positive difference in all three birth experiences.

But wow- I don’t ever remember feeling so depleted after a string of long births, and so done. I had to sleep in the parking lot of a bar on my way home from the third birth- feeling totally unsafe to drive and also unsafe where I was sleeping. I love being a doula, but if this is how it feels…it’s just not sustainable for me anymore.

I can’t believe I just wrote that.

I was so exhausted it reminded me of a chemo hangover. Except I got scared I was causing cancer cells to form again- that the week of stress, sleeplessness, lack of self-care, withheld frustration and spotty nutrition (the healthy food I brought ran out all three times, and I packed a LOT)  might be the precursor to cancer, the way it happened before diagnosis.  (Though chocolate is a mainstay in my birth bag, and must always be…)

The fear that I could give myself cancer again by going back to the work I loved really struck me hard. So…WTF was I going to do now?

Life does feel fluid again- moving in a natural, forward current for the first time since 2014. That is fantastic- and I am so thankful. I just have no real idea what lies beyond the bend in the Limbo river…   I know what I don’t want. So what do I need?

I need true physical and emotional sustainability. I need to unplug, and not be on-call. I ned to make plans with loved ones and keep them. I need to sleep in my own damn bed.

How do I do that?   (Hold please, while I wrestle my inner child who really wants to throw a tantrum here…because I still want what I want even when it’s not good for me…)

OK Universe. I’d like to teach childbirth prep classes, concentrate on supporting birthing families without being in the trenches, as it were. I’d like to mentor newer doulas, my 500-ish birth and business experience has to be worth something, right?

I’d like to support families with cancer- I’ve certainly learned a lot and it’s incredible how much the doula skills overlap with those of a cancer coach…and yes there IS such a thing out there. The cancer doula does exist- and I’ve been asking for one since diagnosis August 6, 2014.  There’s a certification/training in September…I’m working it out.

Maybe I need to giggle and finger-paint with some little kids for a while too…just while I figure out the rest?

I’m exploring, and I’m inspired again. I do feel a spark and a spunk I haven’t felt since cancer hit. I’m enjoying it, as much as the El Nino high surf advisory and the pink cherry blossoms of Spring…I feel the wheel turning.

I think this is what resonated with my new post-cancer anthem.…no matter what cancer took from me,  it’s never gonna ever take away my inspiration, my skills, my curiosity, my heart or my drive to make a positive difference in the world.  Cancer didn’t take ME away.

I’m going to keep listening to that song. Keep belting it out as loud as I can.

Even if it scares my dog.

Now look at me I’m sparkling
A firework, a dancing flame
You won’t never put me out again

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PART OF ME  https://www.youtube.com/watch?v=FZ-9jHj3Orw

Written by Katy Perry, Bonnie McKee, Dr. Luke and Max Martin

Days like this I want to drive away
Pack my bags and watch your shadow fade
You chewed me up and spit me out
Like I was poison in your mouth
You took my light, you drain me down
That was then and this is now
Now look at me
This is the part of me
That you’re never gonna ever take away from me, no
This is the part of me
That you’re never gonna ever take away from me, no
Throw your sticks and your stones
Throw your bombs and your blows
But you’re not gonna break my soul
This is the part of me
That you’re never gonna ever take away from me, no

I just wanna throw my phone away
Find out who is really there for me
You ripped me off, your love was cheap
Was always tearing at the seams
I fell deep, you let me down
But that was then and this is now
Now look at me
Now look at me I’m sparkling
A firework, a dancing flame
You won’t never put me out again

Dee: Life-Choosing the Next Best Thing…

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That title sounded melodramatic, I admit.  I’ve got my reasons, though…

I’m doing great physically- thankfully and purposefully so. Emotionally, I’m feeling really centered, though more like a newly competent sailor in unpredictable waters…I’m upright, I know what I’m supposed to do in a storm (in theory!) and the compass is working but I’m still checking the weather all the time and keeping close to shore. So far, so good, and the life jacket is cinched pretty tight;-).   I’m practicing a balance of  self-care, and caring for others…as a doula, wife and friend.  Balance is good work, and a huge gift.

I get my stitches out in a couple days…I’m looking forward to getting the all-clear to do yoga, swim and lift more than 15 pounds. And I won’t lie, I’m over the Franken-Boob look. Since my last “exchange” surgery Dec 3rd I’ve been in another healing limbo, and I’ll be as happy to be OUT of that in-between emotional space as to get the ugly black spider-leg threads out of my nipples…(yes, that’s exactly what Franken-Boob means;-). My exchange surgery took the heavy, rock-hard water balloons out of the mastectomy-emptied space and inserted softer, silicone implants. Since I was lucky enough to have access to nipple and skin sparing mastectomy (Thank you USCF), the implants were taken out of the scars already used for the mastectomy, on the edge of my areolae.

I really didn’t want a double mastectomy in the first place…I liked my old boobs;-).  If you need it though, get the head of Plastics at UCSF for your recon, ladies. The girls look the absolute best they possibly could, under the circumstances.   (Oh just drink your damn kale smoothie, and get over it…you’re alive, aren’t you? no boobs=no cancer=no whining!) Sigh.  OK.  Fuck.  Alright already!!!!

Just choose the Next Best Thing, right? If you’re going to have cancer, that’s the mantra. I learned that one first with my doula clients, coaching parents in labor to make the best choice available in the moment, even when and especially if what they originally wanted was no longer possible. Even and especially when all the options suck. You pick the best one possible. The one with the least suckage. Pick the door that looks the least terrifying, that makes the most sense to you in a moment when nothing does. Put on your big girl panties and let’s go through it together. Don’t look back.

That’s not quite how I present it to my birthing families, of course. I try to make it as gentle as possible. But the mantra works, and for cancer too. For most un-wanted decisions we need to make.

Can’t get what you want? Choose the Next Best Thing.

Knowing this, I felt ashamed, in a way, to allow myself any negative, apprehensive feelings about my exchange procedure. I was cancer-free! I had every potential for great new boobs! I could get ON with my life and be done with the last 18 months of…whatever the hell THIS shit was!

This is the fun surgery, if that exists…at least it will be when I’m recovered and never have to wear a bra again! It’s pure plastic reconstruction, and an outpatient procedure.  (Kev and I both were surprised to hear that, since we’d packed an overnight bag…poor guy, he had a very long and hard 19 hour day driving and waiting and care-taking and then driving home from UCSF while I got good drugs and new boobs…)

I opted for  the “gummy-bear” texture for my implants. See, that was fun, right?

My daughter and Mom-in-Law came to the hospital, brought me flowers and knitted scarves, and laughed at my crazy post-anesthesia comedy routine. (They really should have recorded me this time. I still don’t believe I asked the handsome male nurse to take his clothes off and dance for me, nor do I see myself requesting everyone take their clothes off just because I was having a hot flash. Hmmph!)

But…checking back into UCSF for the surgery was actually pretty intense emotionally. I expected the flash-backs to chemo, and a taste of that out-of-control feeling that came before my double mastectomy. I did not expect to be breathless with fear of re-occurance, that the surgeon would open me up and find sticky black tumors hiding under the plastic expanders. My family said I asked, many times, for the reassurance they hadn’t actually found more cancer lurking.

I hadn’t expected that fear to stick.

I guess you can’t really get away from fear-and it can be a positive, motivating force. I WILL use it as such, but I have to make sure and do it on purpose. Be Here, Right Now- and keep making “here”  the healthiest and most joyous and least-stressed space possible. Because the fear is still here, too. To paraphrase what Elizabeth Gilbert writes in Big Magic, fear will always be along for the ride, but it is never allowed to drive. (Yes, this is me, putting on my own big girl panties, right now…)

It’s also a challenge when the news about cancer- globally and personally- just never stops. I read that nearly 2 million people will be diagnosed with cancer in 2016. My heart is also going out full strength in many different cancer-related directions right now.  Just in the last week, a dear neighbor lost her father after a long battle. A beloved friend of over 21 years just lost her mother to a newly found metastatic cancer. And now, a sweet and generous friend, younger than me, just diagnosed with a particularly shitty kind of cancer, just as her career is taking off.

This week!

Two million people will be diagnosed in 2016.

Two million people breathless with fear. Staggering.

A year ago, I was getting ready for my double mastectomy. Bald. Nauseous. Two sick parents. Missing the work I loved and the stability it brought. A fundraising auction in the works. Surrounded by so much love and support and needing every bit of it to get through, and I still don’t know how it all happened so beautifully. I remember feeling unbelievably thankful and exhausted and blessed and terrified, all the time. Just a year ago?

I just keep thinking. I’ve got my life back.  I’ve already lost 3 amazing women friends-my age or younger- to this fucking disease.  Why waste a minute more on fear? I have a second chance at LIFE. (Wow you thought the title was melodramatic)

Seriously though that’s how I feel! I am so crazy in love with this life and these amazingly beautiful beings I get to share it with (and yes I mean YOU!).  No patience left for BS or petty every-day crap taking any joy out of my life with Kev and those I hold dear. Done with fear holding me back from doing anything, whether it’s saying the truth I’ve been holding in, or signing up to be hurt or taken for granted out of obligation or history. Done.

Life is just too damn short, and my time too precious.

So, once again, louder this time…I hear “What Next?”.   I hear it with every tinkle of my wind-chimes, every restless shake of my little dog’s ears.  This time though, I have new answers.  I get to move forward. I can take birth clients again, and take care of myself in harmony.  I can open up the door to cancer-coaching, as a natural progression of my doula practice, and make a small, positive difference in the lives of a few of those breathless millions.

Be my own coach in the process- walk my own walk.  I fully expect to fall down but that will just make me a better coach, right?

Luckily,  I CAN get back up, and keep choosing the Next Best Thing…whatever that is;-)

 

 

Dee: The NEW New Normal?!

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Dee:  The NEW New Normal?!

Hello dear ones!

It’s been a while.  So much has changed, I’d like to catch up, and maybe even get some of your thoughts on moving forward…

This blog was meant as a tool for processing life with cancer…to help us fight for my life, for our lives together.   Now, we’re trying to figure out how to live life without cancer. Both Kev and I are reeling in this brave new world.

Sounds odd, I bet. Whiny, even.  Life should be easy, post-cancer, right?  Or, at least, easier!  And of course it is, because I think back to those long terrible chemo days and I can’t believe it actually happened. Some days I don’t believe it’s over, either.

I’m lucky I’m here riding it out. A friend who didn’t survive breast cancer just missed her birthday, and the Facebook reminder of her special day actually brought me to tears.   (First it got me really angry though, truth be told).  

I ride that roller coaster between anger and tears a lot, these days.

I laugh, too, though, every day! And I’m SO thankful. Hopeful. Scared and unsure and inspired and excited and pushing myself, every day. Some days I berate myself if I forget to do my PT or take my supplements correctly, and then I freak myself out. What IF?! ( Though the supplements are a  little complicated: 36 pills/powders, taken 4 different times a day; some with food, some on an empty stomach, some before 2 pm so I can sleep…one with ‘a healthy fat and some black pepper to aid absorption’. Some with a shot of whisky…well, no that’s actually not true.  Unfortunately.) 

Other days, I’m over-compensating any lapses with a level of self-care that’s not really sustainable, in the real world, anyway.  (I’m spending huge blocks of time doing weekly acupuncture, chiropractic, yoga, aquatic lymphatic drainage, then farmer’s market shopping, West Cliff sunset/whale watching; aiming for fresh smoothie-making, home PT, lymphatic care, sugar/guilt-free food prep and guided meditations every day…). This doesn’t even include scheduling quality time with my sweetie, friends or family?!  And now I’d like to go back to some semblance of my old life too-how does that work?  (Oh, and by the way, don’t worry about doing it all perfectly cuz STRESS and GUILT are really the biggest factors for cancer reoccurrence…right?!)

With the level of cancer-fighting self-care prescribed for me by the myriad of supportive professionals, there isn’t time for much else, and ain’t nobody got time for that, at least not every day. Do they?

First world problems, I know.  How fortunate am I to have insurance that pays for my PT, acupuncture and lymphatic support? To have a community that offers free yoga to cancer survivors? To have amazing healthy organic food within walking distance, and to have the ability to walk there and to pay for it?!    How F’ing blessed and lucky am I to have an amazing partner who encourages my self-care, even while taking on more work and stress himself to do so?

What about my beloved Kev’s self-care, you ask? Hmmn…Well, I’m encouraging him, and I’m taking on more family responsibilities than I was during cancer treatment…but yeah. No ONE person in a marriage can spend this crazy amount of time on themselves without it affecting the other negatively. (Now what was I saying about stress and guilt? And which one of us am I worried more about at this moment?  Double Hmmnnnn.)

I don’t want to speak for him, and I’m sure he’s got a good blog or three in him, but I think it’s getting easier for Kev as I get stronger.   We’re both so scared my cancer will come back that my imperative is to figure this shit out now, and calibrate adding in real-world responsibilities in a truly sustainable way as I gain mastery. Or at least competency. Or maybe just figure out how to set multiple recurring iPhone alarms for everything?!  (Serenity NOW…)

I’m reminded of the man who can lift a full grown cow, but only because he did it every day since the cow was born.  (Or, “Look Honey, now I can juggle SIX fiery torches, in between appointments, while meditating and drinking an organic blueberry smoothie, blind-folded!  By the way, where did you put the fire extinguisher?”)   

I’m hoping to help Kev shift his (understandable) vision of me as a vulnerable, at-risk patient into a healthy and fully capable partner, ready and able to take on more than my own damn self-care…and that will get easier after my hair, boobs and scars get back to a new-er normal. (My exchange surgery is Dec 3rd.) And by the way, this is MY hang-up.  I’d like him to see me as a sexy, smart, capable and funny go-getter…but… well… shit. I’d like to see myself that way again, too.

Gotta crawl first, right?

I’m looking forward to Kev being able to see himself as more partner than protector, ready and able to live life with me instead of fighting for my life.  It’s another corkscrew turn on the New and Improved Balancing Act roller coaster. We’re both a bit wobbly, but holding onto each other as best we can. And as expected, my life even post-treatment has it’s own set of day-time TV worthy twists, which I will elaborate on in a minute…

We’re realizing our post-cancer relationship is not the same. In some ways, it’s better. I have an even deeper love for my man, and endless admiration…and a staggering level of gratitude.

Realistically, in some ways, the change sucks. I loved our pre-cancer life and even though our priorities have shifted in a really healthy way, the aftershocks are scary. We need to address some probably normal survival-mechanism–but still problematic–patterns forged during cancer. We’re talking about how to form a conscious re-perception of of each other,  to see the new in each other through fresh, unbiased eyes. I feel like we came off the same battle-field, are stronger for it but the fight changed us, gave us new stories, left invisible wounds. I think I missed some of his story.

I want to meet myself again, and meet Kev in this new quiet peace. I want the peace to last.

So I’m working on balance, in all ways. Work-life balance. Energy input-output. Patience-pushing myself. Acceptance-striving for positive change. Hope-realistic research. Expansion-contraction.  Perfection-process and practice. For those who know me, you can guess I’m a little clumsy here too.  I’m in a really good place though, don’t get me wrong. With all this extreme self-care, I should be!

My patience is higher now, after radiation treatment, as is my endurance.  I’m taking on repeat birth clients again, and loving it.  I have a deeper reserve of empathy and advocacy for my birthing families, and I don’t sweat the small shit nearly at all.  I am appreciating being able to go more than 4 hours without needing a nap!  My chemo brain is finally going away, so now all I have to deal with are my normal brain-farts, instead of those really smelly chemically-induced ones;-).

Baby steps.

Kauai 10th

kauai hikeKev and I celebrated our 10 1/2 year anniversary in magical Kauai…(our 10th got a redux since we were in chemo on our anniversary). Thank goodness for all those credit-card points!

Kev looks quite handsome in his lei, I must say!  I was still pretty bald, but he says he didn’t mind;-).  It’s a blessing to have that healing space after cancer treatment ended. We needed a refuge, to help recover from what was and to give us some reserves for what came after…

My sweet dad passed about a month after his 75th birthday…he took a sudden down-turn about a month after Kauai.  I think he waited until he knew I was going to beat TNBC. We had been providing hospice care for his advanced COPD in our home for about 3 months, and our family came together beautifully to care for his medical, emotional and daily survival needs…I was blessed to support him as he passed peacefully at the VA hospital.Dad's 75th

Right after he died, I got really clear that I wanted…needed… to move out of the house in which I had survived cancer treatment, and where my dad received his hospice care…a fresh start.

That very night, I found us a new beautiful place, HALF the size of our old house, and so we got rid of HALF our stuff. Very freeing! We moved, about a month later. It’s our little oasis, and I love it. I’ve had the luxury of setting it up, so I’m feeling very grounded here…Kev? Well, let’s just say he didn’t have the absolute clarity and need to move that I did, so he’s had his own experience, but I’d say he’s settling in now.;-).

After losing both my parents in the last 3 years, I am feeling a primal mama-bear urge to spend more quality time with my own cub…but now my daughter’s moved three hours away with her girlfriend. I know, she’s building her life, and now that I’m healthy she can get back to it, but…I wish we were closer.

Priorities have shifted, so now we’re taking steps to shift reality–much harder!  Extreme loss and grief, balanced with new-found freedom. Feeling like life is incredibly short, and hoping it’s long enough. Loving this precious time to think, and breathe and BE…and feeling a new-found sense of urgency to explore, to experience, to DO.  Life is a balancing act, right…

Here’s my question to YOU, Dear Reader. If Kev and I were to turn this blog into a book, would you buy it for your loved ones fighting cancer? Recommend our unique perspective, as a couple moving through breast cancer together, to others?

We’d love to know.  There are over 1350 of you signed up for our blog, from over 25 different countries… Amazing!

Thank you for sharing the conversation…I know it’s been good for me. Hope you feel the same. I’m sure Kev will be following up with his own new blog entry soon, because, as you know, he ALWAYS wants to have the last word! 😉

Dee: My Own Private Relay for LIFE

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Dee: My Own Private Relay for LIFE

Somehow, this year of all years, I had missed all the signs. You probably didn’t–or the purple buggers haven’t arrived in your town yet. The Relay for Life, cancer awareness on steriods, where teams commit to raise money per mile and take shifts over a 24-hour period to walk, around and around, and honor or remember cancer warriors and fallen soldiers.

Dee's Famous  Lavender Lemon Bars

Dee’s Famous
Lavender Lemon Bars

24 hours!? I’ve only done it once before, in 2008. My dear friend, Ruby, organized it to honor one of our own who won decisively against pediatric cancer, and our team was, of course, the Pink Ninjas–cuz that’s what we were, dammit! Finally allowed to let our alter-egos out to play, we Pink Ninjas kicked ass, raised money, pitched tents, worked together, cackled all night long and produced some amazing baked goods to sell while doing it…and in style, I might add! There was plenty of fun planned, including a themed Zombie Walk at midnight and a 2 am taco bar, to keep the masses happy while walking.

One of the most touching and sobering moments of the relay was the Luminaria Walk. For a $10 donation (like all the $ raised, a huge % of proceeds goes to cancer research), you get to decorate a simple white paper bag–lit by a candle–either in honor of or in memorial to a loved one with cancer. These would illuminate the circular path we’d share all night long with the hundreds of other participants. I’ll tell you, I had NO IDEA how much that would affect me…and never did I think one of these would shine for me 7 years later.

IMG_0105The Luminarias I did in 2008 were for beloved friends whom I hadn’t really known how to support through their battles. I just didn’t get IT, I hate to admit. (Maybe the more compassionate of you readers might tell me that since I’d had no personal or family experience with cancer, that was understandable…but that’s just not true. I was fucking clueless, and I should have reached out, done more. I’ve experienced so much love from friends through my own breast cancer–from many with only a connection to ME and not cancer in general–that I’m ashamed to admit I was one of those who didn’t know what to say to those I loved. I was paralyzed by fear and guilt that I would say the wrong thing…and I’m sorry for that.)  That first Relay for Life gave me better tools, as I was inspired by the stories walking around and around with me.   Now, there are  perfectly-worded empathy cards for cancer warriors that dumb-asses like me, with more emotions than words, can send to those they love. (See examples below). My first Luminarias were an early step toward starting those conversations and honoring the ones I wanted to support more gracefully.

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It was an emotional event. Luckily, I was surrounded by friends with whom I could be vulnerable and all their kids, so I could shake it all off and be silly, too. (Ample opportunities are manufactured to keep silliness going as the focus and stories can get pretty heavy. That year’s schedule included s’mores at 2 am, and I was looking forward to taking that sticky walking shift, along with the all the teens in our tent city!) 

That year, I was on-call for a doula birth, and I had to leave to attend to one of my laboring mamas before the s’mores came out. I supported that family and welcomed their new little bright light while wearing my Pink Ninja shirt, and luckily it was still clean enough to wear home afterwards;-). Honestly, I think a birth was just what I needed that evening–a fresh beginning, the promise of everything in that new life. It’s all perspective, right?

A little something you might not know about us birth workers…we get high from birth. It doesn’t really matter if we’ve been awake and purposefully positive through two or 20 hours of intensity, mess, and professional mediation in unpredictable situations. Once that baby emerges, we are flying on some age-old hormones, sacred joy and the satisfaction of a job well done. Damn, it’s good, and there are many of us who call ourselves Birth Junkies for just this reason;-).

After a lengthy one, the birth high is usually just enough to get me through the 2 hours of immediate post-partum needs and my drive home. That particular birth had been fairly short, and I’d been gone maybe 9 hours total. After “fast” births, I can stay pretty jacked up, and in the middle of the night sometimes that’s a bummer. On the Relay night though, it was perfect, as I had a party to attend, even though it was before sunrise! The Pink Ninjas who were awake were happy to see me and hear my birth stories, so I jumped into the next walking shift. (Breakfast burritos, bonus).

2015

Life is a bit different. The Relay for Life is back in town…no Team Dee pulling an all-nighter with matching shirts, though maybe that would be fun in a year when I’m not going through–or recovering from–any kind of cancer treatment myself. In fact, I didn’t even know it was happening this weekend!

I’ve been really wrapped up with my own healing, dealing with lymphedema, and coping with my dad dying by inches in front of me from advanced stage 4 COPD. Supporting my dad and providing hospice care in our home has been quite an experience for Kev and me–and a blog of it’s own, believe me. The last two weeks have been much harder, as he’s going through a normal-but-heart-breaking series of declines and plateaus…and we’re the ones responsible for his life or death: And, yes, we do save his life now, on a daily basis.

We have had to learn how to give the right medications in the correct order and dosages to stave off medical crises and asphyxiation. Afterwards, we keep saving Dad’s life by hugging him and bringing him more Death by Chocolate ice cream on demand. Because of this situation, we don’t dare leave for too long, just in case Dad has yet another breathing attack. He knows what to do in the early stages, but if he doesn’t address it right away it can get scary really fast. It’s a challenge for him to set up his nebulizer on his own during an attack that makes him feel as though he’s drowning.IMG_4899

Even so, it’s unbelievable. The addiction to cigarettes is so deep and strong that one time we caught Dad on the back porch, portable O2 tank turned off in his lap, smoking away. After he had gotten some “fresh air,” as he called it, (don’t even get me started) the only way he could physically make it back inside was to do an inhaler and let the oxygen tank breathe for him until he could hook back up to the O2 compressor in his room. Though the conversation was painful for all of us (it was clear Dad was trying to hold onto his last semblance of independence), these field trips out to the porch obviously no longer occur with the oxygen tank in tow…!!! :-/ We help Dad out to the porch to smoke his one cigarette per day, but all the oxygen gets brought back inside. It has been quite an experience learning how to balance respect for Dad’s wishes and autonomy with common-sense safety and responsibility.

I can only imagine the empathy cards for COPD. “You know it’s going to be a good day when you don’t blow yourself up!” Ahem. Sorry. If you don’t laugh, you’ll just cry, and yell, and drink, right? (Or all of the above).

Needless to say, we’ve got a bit going on. Kev’s students are all heading into finals week, so that means he’s dealing with stressed, hormonal, overextended crazy people. (And that’s just at home! The students are basket cases too!) So I was pleasantly surprised when Kev invited me to walk the dog down to the Relay site, do a “victory lap” and come back. I could tell it meant something to him, and even though I was tired, we went, holding hands and enjoying the sunset.

When we arrived, the party was definitely happening, though the crowd seemed smaller than before. They were almost done setting up this year’s Luminarias, and when Kev stopped at the craft table and pulled out his wallet, I knew this was why we were here…

Light *Love* ForeverCANCER-FREE! Thank you, Team Dee

Kev, my love, we’re going to be walking a Victory Lap together for the rest of our lives… Thank you.

Every light has a story..

PS: Even though sugar is not a substance found in a cancer-fighting kitchen, I may still make these for VERY special occasions. Here’s the recipe for my famous Lavender Lemon Bars. Maybe one of you brilliant folks can modify this to be a bit more healthy, I don’t know, gluten free flour and coconut sugar? Or maybe I’ll just have one really teeny tiny small bite of the traditional recipe….everything in moderation, even moderation, right?;-)

Dee’s Lavender Lemon Bars                          

1 cup organic pastry flour

1/2 cup butter, softened

1/4 cup Dee’s Organic Lavender Powdered Sugar (1/4 c lavender in 1 lb powdered sugar, let sit overnight)

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2 eggs

1 cup organic white sugar

1/2 teaspoon baking powder

1/4 teaspoon salt

2 teaspoons grated lemon peel

2 tablespoons lemon juice (Meyers off the tree are best)

Heat oven to 350ºF. Mix flour, butter and Dee’s Organic Lavender Powdered Sugar.   Press in ungreased square 9x9x2 pan building up 1/2 inch edges. Bake for 20 minutes. Beat remaining ingredients until light and fluffy (@ 3 min). Pour over hot crust. Bake until no indentation remains when touched lightly in center (@ 25 min). Cool and cut into squares. Sprinkle some Organic Lavender Powdered Sugar on top, enjoy!

Empathy Cards for cancer patients, designed by Emily McDowell http://emilymcdowell.com/collections/cards/Empathy-Cards

emily mcdowell empathy lemon emily mcdowell chemo emilymcdowell 3 emilymcdowell4

Dee- The New Normal

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Well, Dear Readers, we made it. My last day of radiation was last Thursday May 28th, also my beloved daughter’s 23rd birthday. I am red, raw and exhausted…but I’m done! It’s been a strange new normal, getting up for radiation (RT) every weekday, and my time was set for 7:15 am…WAY too early. I had high hopes of walking or working out with my mama friends immediately after RT, and for a week or so that worked…but honestly in the second week I showed up in my PJ’s and then went right back to bed;-). Then, I got the time changed to 8:45, and that was more reasonable, though I missed those mama workout buddies who like to burn calories and miles right after school drop-off. I didn’t have the energy anyway, unfortunately. From weeks 3-6 I was sleeping about 15 hours a day:(.

Since I wasn’t going to run off after RT ( literally) I took it a little slower, and got to know my fellow cancer warriors. The books say to be wary of engaging your waiting-room buddies, (“you never know what they might say to throw you off your positive, purposeful journey”) but I found it mostly therapeutic, and to be honest, confirmed that even as tired and overwhelmed I felt,  I was really doing my best. There were definitely others not doing as well- physically or emotionally, and I shared a little extra energy for them when I could. Most of the talk started with our hair… the lack-therof, or the growing-in process.

I’ve let go of my hat, for the most part, and embraced my natural salt and pepper shades coming in (or call me ombre, to be fashionable;-) so it’s an easy conversation starter. Most women in RT still go with the hat, though I’ve seen a few wigs, mostly on the older women, or those heading off to work. (Hat’s off to you, ladies! Even if I knew what to do with the rest of my LONG life, right now I consider napping my part-time job, and managing my own and my Dad’s appointments the rest of my shift.  Blessed I can still be doing my own version of extreme self-care and recovery right now, including acupuncture, chiropractic and physical therapy…excelling at other work doesn’t seem possible right now.)

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Then talk usually moves on to lymphedema, which is on my mind these days, and also an obvious ice-breaker as my compression sleeve makes me look like I’ve got a real ‘sleeve’, with pretty tattoos. UCSF had warned me to look for signs: my left arm feeling heavier, or going numb. I noticed it about three weeks after surgery, so I caught it fast, and got a referral to a lymphedema specialist in town. I love my lymph system- it maintains the body’s fluid balance and fights infections. But now, even with only 8 nodes removed, I’ve got lymphedema, so I’m one of the “lucky” 15% after breast cancer/surgery to deal with it.

I was glad my specialist taught me my own lymphatic movement/drainage techniques, and I do them 2x a day.   I also get to wear a padded compression bra, a cross between a medieval lycra torture device and S&M wear for senior citizens. Lymphedema really pisses me off (in case you haven’t noticed), so I’m doing all I can to alleviate my symptoms asap. One day last week I even taught a woman in the waiting room how to do her own lymphatic drainage …her lymphedema was way worse than mine, and her specialist had only recommended spending $70 to have someone else do it once a week. Sheesh!

lymphediva-hummingbird

My LympheDiva sleeve had better be pretty, since it keeps me about 10 degrees hotter than usual and triggers hot flashes. I’ve even gotten some disapproving looks from those who are far enough away to think the tats are real.   Everything about lymphedema is damn annoying!  It’s not just the gear and daily drainage…it’s mostly the restrictions that get me frustrated:

No flying without gear (and fear of extreme swelling), or for longer than 5 hours at a stretch.

Limit time in high elevations, as my arm may swell.

No hot tubs, (like EVER).

Lower my alcohol intake (No one has been able to sufficiently explain why though).

Wear a sleeve when exercising, as my arm may swell.

Don’t spend long periods in countries with mosquitoes carrying lymphatic filariasis. (microscopic, thread-like worms who live in the human lymph system, found in 73 countries that I’m now supposed to take of my bucket list, including the tropics and sub-tropics of Asia, Africa, the Western Pacific, and parts of the Caribbean and South America. OMG! NO extended exotic, tropical or rugged travel? WTF?) 

No sex(though that’s mostly because of how I feel in the ugly and uncomfortable compression garments, not cuz my sweetie is repelled by them, or me. I know, I’ll get over it. Maybe after I drink some wine and sit in the hot tub and…oh. Wait. I shouldn’t do that……).

No salt. (Ok I can handle everything else but no SALT? Seriously?;-)

So all you who know me well also know my inclination is to resent restrictions like these…especially since I thought radiation would be the end of my cancer treatment, and I could just recover better and brighter. I’m hoping lymphedema isn’t going to affect my long-term future, as immediate care may alleviate symptoms later…sigh.

Of course,  all I want now is to be overlooking some high-elevation South American ruins I’ve just flown 20 hours to see and hiked 14 hours to experience…while soaking in a hot tub and enjoying Pisco sours with a salted-rim. Oh and definitely NOT wearing my ugly gear!   (Thank goodness I’ve got my sweetie, who will make low elevation, local travel and even a low salt diet fun…at least before the gear goes on!!)

TMI, once again, I know. Thanks for putting up with my ongoing journey!

Dee: Times, They are a Changin’

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Dee:  Times, They are a Changin’

Happy Spring-it’s been 6 weeks since my last blog- this is a long one, and I have another one coming soon, so if you want to catch up, get comfy!

Post-surgery I just retreated. It was pretty overwhelming, especially with my dad and mom in law needing care, and not enough hands to go around.  I was glad surgery was over, and only 8 lymph nodes removed, and only 3 of them with trace amounts of cancer. It felt like the hardest part was over, and it was time to move forward, regain some of my life back…and get boobs!

Reconstruction has been both an amazing process to watch, and pretty fun, to be honest. I know that’s not the case for many women, so I’m thankful for that. Skin and nipple-sparing surgery means I left my double MX with about 150 CCs of fluid in each implant, ad I actually had some boobs…The first time I was unwrapped, 1 week post-surgery, I was too scared to look…Kev had to say “Wow, Dee it’s OK, you look like yourself, just a smaller size, open your eyes!”.  That was a huge relief, on different levels.  (He’s not afraid to look at me! I don’t have a huge scar! Maybe this will all turn out alright after all!)

Since then, reconstruction consisted of quick visits up to Plastics, at UCSF. I happen to have The Man, and my plastic surgeon’s a bit shy, a sweet guy with a very gentle touch, who seemed to look at my boobs more than my face. In this case, totally justified and welcomed!

Right now, I have expenders in, which can be filled with additional saline to stretch my skin and increase my bust;-).  First time, a long needle was inserted right over my nipple into the bag and 30CCs added, which I didn’t feel ( I was still on good drugs 1 week after MX).  Second time, about three weeks post-surgery, I got my drains removed ( a very odd moment, like a snake slithering out of my armpit)  and another 100CCs added to each side- this time, I FELT it. Like a small dog asleep on my chest all the time, and I had to push the puppy with every breath. (How much do those teacup chihuahuas weigh? I bet about 200 CCs!)  This feeling lasted about 10 days…so I rescheduled my next expansion appt for the following week, to give me a little breathing room, pun intended. I was feeling better at this point, my scabs and bruises over my nipples were almost healed, and I didn’t need to wear a bandage/bra anymore.  I slathered Sweet Herb medicinal’s Healing salve on multiple times a day, and i know that helped with the minimal scarring…(That and my World Class Surgeons, anyway;-). 

So the next expansion appt was with The Man himself- even though these appts last about 8 minutes and can clearly be taken care of by the quick-fingeed nurse instead of the busy and probably expensive Man. I asked him if he usually did expansions, and he said “Well, no, it’s been a while, but your nurse happens to be off today..I do know how to do it though, don’t worry!”  OMG. I reassured him that I figured he was capable, I just didn’t want to take his valuable time… and wow. What a difference! He offered me a numbing shot (that was a first) and with his light fingers I didn’t even feel that, much less another 100 CCs. The expansion went in so slow and easy I didn’t really have the same intensity as before. ( No teacup puppies this time, more like a perched parakeet, though I still felt pressure for another two weeks). 

The fourth expansion, by the nurse (and a numbing shot, by request;-), brought me to 565CCs. I think Kev was a little disappointed, since we were expecting another 100CCs…after all, a great rack was our shared Booby Prize for getting through f’ing cancer and this last year from hell.  The nurse said i had hit my maximum though…and I’m OK with it.

It’s been fun, actually- I can’t lie. I’ve been able to toss my bra and go commando- and I feel so much more comfortable, and my clothes look better on me. Those bra-burning gals in the 70’s had more than politics and equality on their agenda- it’s SO much more comfortable! Finally, some good comes out of all this…  I start dreaming about new bikini tops and strapless dresses… We make quality time with old friends, and deepen ties with newer ones, and we take Spring Break off and soak in some staycation fun.

Then we get UCSF’s recommendation for radiation.

One of the many good reasons I opted for a double MX was the lowered potential for RT…with a lumpectomy, it’s a guarantee. We waited 3 weeks for the UCSF tumor board to confer over my pathology results. I gave it up to my brilliant team, but I was praying HARD for different news. Even though I trust them, I wanted to make sure this wasn’t a “can’t hurt, might as well” type of recommendation…I was still pushing back until they informed me there was a 35% chance of reoccurrence without RT, and only 5% with radiation.

Well, shit.

We get a referral for the best RT doc in Santa Cruz…since radiation therapy is EVERY. WEEKDAY. FOR. 35. DAYS. it’s not feasible to do my treatment at UCSF…though my body mapping appointment with Dr. RT sure made me want to make that happen instead. I’ve just gotten used to the way I’m treated at UCSF, and I don’t just mean medically.

Let me back it up a second…One of my main concerns about radiation is my left breast will be the one glowing in the dark- and not only do I have heart disease on both sides of my family, the last chemo I received, A/C, is also very hard on my heart. in fact, my heart rate finally JUST came down to normal from the 130’s tempo I was keeping since January. I didn’t want anything else to compromise my heart…and if the lymph nodes in the middle of my chest are irradiated, there’s a high chance of a ‘heart incident’ within 10 years.

WITHIN 10 YEARS.

My mom never fully recovered from her open-heart surgery, and it was a horrible, scary experience for our whole family. I’m 46, and WAY too fricking young to be worried about a heart attack in my mid-50’s. Damn, I want be checking bucket-list items off in my 50’s, not kicking the bucket!

But I trust my team at UCSF, and those numbers don’t lie. Since my tumor was at the 12 o’clock position, directly over my nipple, there was a discussion about where the radiation would be needed- at the site of the lymph node removal, and the tumor site, obviously, but…do we attack the inner mammary nodes over my heart?

Well, my amazing World Class Surgeon and Oncologist thought not, but also said they trusted my SC RT doc…and it would be her show, not theirs.

Kev comes with me to the first RT prep appt… and my thorough, well-researched sweetie asked all the right questions. I had done my reading and was well prepared for the process itself, but was freaking out about the possibility of being pushed into RT that would give me further heart complications “because that’s how we do it here’. I needed my bulldog!

We left  the appt feeling relieved and heard, and we both liked our RT doc very much, and trusted her, even more so after we agree I should most likely only get RT where it’s needed, and it’s probably not needed over my heart. Then I went in alone, the following week, for a ‘mapping’ appt, which I thought would be no big deal, and one I could handle without a bulldog or a honeybee. I am  usually a very independent gal, and I was enjoying being self-sufficient and giving Kev a little precious time to himself…(bet you know where this is going, huh?)

So I’m lying in a cold slab of a table with my shirt off, getting tattooed. (Oh yeah, one of the other reasons I was hoping to avoid radiation... they’re just three small blue dots on my breast and sternum, but they can be seen when I’m in a tank top, and it’s just another insult to the injury of my boobs, ya know?) The techs were all very nice, of course, but I was in a vulnerable place all of a sudden, especially when I was confirming that I was NOT getting the lymph nodes over my heart irradiated, and they answered that they map the whole area, and then the Doc decides. OK, fair enough.  She’s already seen enough data to make her decision, the same data UCSF shared from the PET CT, 4 fancy MRI’s and CAT scan I’ve already had during this adventure, so I figure this new ‘mapping’ (with very rudimentary equipment) won’t change our previous understanding made in her office.

Then Dr RT stops in…I ask her again, about radiating the lymph nodes over my heart…I’m nervous, dammit, and I already feel pissed about the need for RT at all, without the added risk of treatment. She just looks down at me, half naked on the table, and says, “I haven’t decided yet”.

 Wha–aat?

So in the seven months I’ve been treated at UCSF, not ONE person- doctor, surgeon, nurse, desk jockey – NO-ONE has spoken to me as if I were not the one making the ultimate decisions about my care. They were just giving me all the information available, and then trusted and supported ME in my decision-making, because I am the ultimate healer, not them.

In four words, my new doc had just smashed the confidence and respect I had been building for her and for radiation treatment in Santa Cruz. All I could say was “Well, I want to be a part of making that decision, before radiation starts!” and then I had to shut up, or start crying.

So instead of coming with me, and probably fixing the situation right there, Kev gets an emotional phone call…and we start throwing around crazy ideas to manage daily radiation treatments in san Francisco instead….

About two hours later, my Santa Cruz RT doc calls me, and says, “WE only need radiation treatment on the tumor site and lymph nodes, so your breast but not over your heart.”

I’m sure she could see my shock at the appt and heard my immediate defensive self-advocacy. I know from all my years as a doula, it’s really hard to be the one advocating for yourself in the midst of what you’re going through physically and emotionally- another way labor and cancer treatment relate. Of course birthing mamas and cancer warriors can and DO advocate for themselves during the process…but it sure is a blessing when we know we have a honeybee and a bulldog to take care of us so we don’t have to do so.

Had my second day of radiation today, 7:15 am every weekday through May 18th.

So far, so good…

Thanks for hanging in there, lovely readers. There’s more to the story, and some more challenges to deal with…sigh. I’ve got a lot of emotions going, and it will take another blog post to unleash, ahh, ahem sorry, unfold those feelings into a coherent post. It’s been a long one already though so…

Stay Tuned;-)

Kev #21: Some Quick–and Mostly Positive–Updates… :-)

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Dear Family:

I said I would check back in, so here I am!  Updates are flowing…

Deidre:

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My beloved has come to terms with the fact that she should do radiation therapy, and so that will be moving ahead immediately after her reconstruction expansions have been completed.  This gives Dee the best shot at never having to go through a damned battle with cancer again, so I am all in favor of it (of course, I’m not the one who has to go through radiation, though, so easy for me to say, right???).  We trust Dee’s team up at UCSF implicitly.  They have saved my sweetie’s life and been kind, thoughtful, solicitous, and graciously optimistic throughout this entire horrific process.  Dr. Esserman, Dr. Park, Dr. Foster, Dr. Fowble, and the entire rest of the team at UCSF have been truly superior, exceeding our highest expectations (and those of you who know me, know that I have very high expectations indeed).

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Deidre’s Dad, Don:

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Don is back home with us now.  He is doing pretty well, all things considered; however, he is limited to one substantive activity per day.  Unfortunately, Don began smoking again almost as soon as he walked out of the skilled nursing facility.  Man, that is a nasty and pernicious habit!!!!!  The grip that cigarettes have on Don is staggering to witness.  It is also very sad and difficult for both Dee and me.  However, Don is an adult capable of making his own choices, and he has made his.  Now, we just wait…

My Mom:

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Antoinette is getting antsy as hell to leave her skilled nursing facility.  We have a follow-up visit with her surgeon on Monday that will determine exactly when she will be released.  Mom’s infection seems to be clearing up nicely, thank goodness, and she is roaring to get back to her regular life.  I’m sure she’ll be seeing many of you in person soon, just as I’ll bet she’s been keeping in touch via Facebook.

Buddy the Wonder Dog:

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Buddy underwent surgery last Tuesday, and his pathology report reached us by the end of the week.  Miracles do happen!!!!!  Buddy does NOT have cancer!!!!!  His growth was something called a hystiocytoma.  It was ugly and uncomfortable, but benign.  Hopefully the surgery got it all.  Bottom line, though, is that our boy is all good…  🙂

Much gratitude to all of you for your ongoing love, care, and support.  Take good care.  Have a tremendous weekend…

Love,

Kev

Kev Standing On Queen

Kev #20: My Life Has Become a Country-Music Song

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Here’s an old joke: What happens when you play a country song backwards?  You get your house back, your wife back, your dog back, and your truck starts running again.  After reading below, chime in as to whether or not Dee and I should figure out how to play our song backwards…  I’ll enumerate by loved one.

Dee:

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Here is the final, actual, real-McCoy 411 on Dee’s pathology from her double mastectomy.  All of Dee’s breast tissue was completely cancer free, which is ABSOLUTELY, TOTALLY AWESOME!!!!!  🙂  However, three of the eight lymph nodes that were removed tested positive for residual cancer.  This means Dee is now preparing to face radiation, which extends her course of treatment and complicates her reconstruction a bit.  However, radiation gives Dee the best chance of not suffering a recurrence, and that really is the salient point after all we’ve gone through these past seven-and-a-half months.  Dee is quite grumpy about this development, so, if you’re inclined, I’m sure she would appreciate warm thoughts and kind wishes sent her way.

Don:

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Dee’s dad ended up in the ER a few weeks ago because of a heart attack and pneumothorax (collapsed lung).  These issues were the result of his extremely advanced COPD caused by years of heavy smoking.  Luckily, Don made it out of the hospital after a week and went to a skilled nursing facility in Santa Cruz to regain his strength before returning home to us two days ago.  So far, so good (although Dee and I aren’t entirely sure he’s completely done with smoking yet). We’ll see…  :-/

Mom:

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As you know, my mom went in for major surgery a couple of months ago to repair a large aortic aneurysm and unclog her femoral arteries.  Although that procedure went perfectly, Mom developed infections–one minor and one major–in her femoral artery surgical sites and refused to follow my advice to call/go see the doctor until her discomfort became nearly unbearable.  Once she finally did go to the doctor, he hospitalized her immediately, performed a second surgery to clean out the infection, kept her in the hospital for a week, and finally discharged her to a skilled nursing facility where she is still residing.  We see Mom’s doctors tomorrow and next Monday, so hopefully she’ll get the all clear relatively soon.

Buddy the Wonder Dog:

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“Come on, Kev, you can’t be serious,” you must be saying to yourselves.  Oh, but I am…  Buddy, our beloved Dachshund-Jack Russell mix, has somehow developed his own cancer in sympathy with Dee.  Yes, you read that correctly.  Our dog has cancer.  He goes under the knife tomorrow morning, and we should have his pathology report by the end of the week.  I’ll let you know how it goes.  Please send along your prayers and well wishes to our little guy.  Dee will totally lose it if anything happens to him, so we need all the help we can get to make sure he’s A-OK.  Next to me, Buddy is the love of Dee’s life, and she most definitely is the love of his.

Thank goodness our daughter, Jay, my mom’s dog, Cali, and I are still on our feet.

Jay and Kev Dance for Dee

Trust me, I am laughing through every day at this point because I can’t stomach the alternative.  Also, I am still able to flip all this junk on its head and look at it in the following way: Dee is well on her way to a full recovery; Don, hopefully, will finally decide to make a positive change for his health–better late than never; my mom will be fine soon; and we are optimistic that Buddy will pull through just as his Mama did.

Much love and gratitude to all of you.  We deeply and sincerely appreciate your care, kindness, and assistance!!!!!

Kev

Dee- It’s never all good, or all bad, is it?

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Dee- It’s never all good, or all bad, is it?

Hello lovely friends…  I’m healing from my double mx, and healing well, but that means I’m just SO so tired. I’m sleeping @ 15 hours a day, even 12 days past surgery…until recently I’ve been practicing extreme self-care, and visioning some sort of healthy, interesting and different life experience than I (we) have had since our cancer journey began.

We got amazing good news with the pathology report- only a teeny tiny amount of cancer was found in one of my lymph nodes…and the UCSF Tumor board discusses whether radiation might be recommended, or if all I get to do now is continue with reconstruction ( a really crazy and surprising process) and healing. Please, send me some good wishes and prayers I get to avoid further radiation treatment…I still go to UCSF weekly, for the next month or two, to fill my expanders with a little more fluid, and stretch my tissues till I’m where I want to be…it’s an odd feeling. The early results of my skin/nipple saving surgery is pretty mind-blowing, but since he had a better view, Kev may have more to say on that, though I’m not sure if he’ll say it here? (Well…you know us. He probably will! haha!)

Surgery day was surreal.  My lion-hearted surgeon Dr. Laura sang “Somewhere over the Rainbow” to me as I was going under…and 5 hours later the job was done. I actually don’t remember that happening, though Kev heard her starting to sing in the elevator on the way into the ER, so I’m sure it’s true.

Drugs are so weird. Jay and Charisse say I was pretty loopy and much funnier coming off anesthesia than normal. They stayed with me so Kev could breathe some stress-and-sterile free air out of the hospital, and grab dinner and some well-deserved drinks before trying to sleep in the leprechaun cot they wheeled up next to my bed. I’m glad they were there, as I have no memory of this either…

To the RN who asked, “Do you have any cultural or religious preferences?” my response was “”Yes, I’m a pagan (not true) and so I want everyone who enters my room to be completely naked at all times (definitely not true).”

Then I correctly gave my absent husband’s phone number for the communication white-board in the room, and  then added, “Under “Language / Special Needs” please write the following:

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At least my kids thought I was funny. Don’t know about the nurse;-)

My amazing surgeon visited me in the morning, laughing at my attempt to use my hat as a sleeping mask, and jumped in for some fun. She’s just full of awesome like that!

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Kev is emptying my mx drains twice a day. ( I won’t even describe what’s coming out, though it smells like bloody show (birthy folks you know exactly what I mean) and it looks…well…let’s just say I may have lost my love of sangria forever). Hopefully this Wed we get a double dose of goodness: no recommendation for radiation, and my drains out. I can’t imagine how that’s going to feel, but I plan on using every pain reliever possible just in case.  Until the drains are out, i can’t drive, wear anything but my oh so pretty white (?!) mx camisole with internal drain-pockets, and I can’t sleep on my side…which is actually the hardest part!

Not driving is a pain though…especially as we have two parents in two different hospitals right now, and only one driver, who happens to work full time, and who is also taking care of me. Oh and doing the taxes…which means both our personal and business taxes, which are actually due March 15th…so yeah. Driving will help ease some of Kev’s responsibilities.

Even though both Don and Antoinette are in different hospitals ( Dominican in Santa Cruz, and Sequoia in Redwood City) they are both doing well and recovering enough to be admitted to Skilled Nursing Facilities. Both of them. So of course we’re trying to get them in the SAME facility, down here…but so far the coordination to do so is staggering. At least I can take care of that!

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It takes a village, and our small family is definitely pulling together;-). Jay and Charisse drove down from SF to visit Grandma Antoinette at Sequoia Hospital…and of course Grandma beat them at Cards Against Humanity…again.

It’s never all good, or all bad at the same time…

One probable challenge, which neither of our SF hard-working kids can assist with sadly, is that both parents are being released on the same day. That would be Tuesday…Did I mention I (hopefully) get my drains out on Wednesday?   Sigh.  Still only one driver in the house on Tuesday… and Kev has to get Mom discharged from Redwood City, admitted and settled (somewhere TBD) in Santa Cruz, and then to work…my job is to bother one of my local Angel Honeybees to help get Dad from Dominican to his nursing facility (still TBD but hopefully same location).

I think we have my Dad covered, I have two potential rides for us, but wow, right? What are the odds?

I’m thankful they’re both well enough for the medical half-way house…they’re both feeling well enough to be discharged, complain and make requests, so that’s positive;-).  I’m SO thankful my pathology came back  99% cancer free…it’s been a long hard road, and I know your love and care helped heal me…

hottie and halloween dog bunMost thankful for my amazing husband…he still loves me bald and cranky. He has the patience of a saint and the humor of a sinner. I adore this man and want to take some of the weight off him…he says my positive pathology report lifted an elephant of his chest, and he wants me to rest and heal. The silverback might need some help though…

I’ve got my lists and things to do in the midst of healing…and that’s fine. Glad I can do what I can for our parents and Kev…  happyI can pull a little more of my weight, in the 9 hours I’m not sleeping;-)

But there is this little tickle behind my ear……an almost imperceptible itch between my toes, a tingly whisper in the wind that says, “OK Dee. You’re almost done kicking cancer’s ass….

“Now what?

Kev #19: Tomorrow Is a VERY BIG Day…

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Dear Family:

This note is going to be short and sweet because I am long and sour after a very trying day…

Tomorrow, Wednesday, February 25th, Dee and I are going to meet all afternoon with her entire team up at UCSF in order to receive the pathology results from her double mastectomy, which occurred last Tuesday.  These data will inform the best path forward and illuminate more clearly exactly what stage/degree/et cetera Dee’s cancer was.

Seriously, please, we need your love, your support, your prayers, your energy, your good vibes, your jokes, your laughter, and your active participation in manifesting Dee’s healing.  Our reserves–mental, physical, emotional, and spiritual–are low, and we welcome all of you to help us replenish them.

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In case you haven’t heard yet, Dee’s dad, Don–who lives with us–had to go to the emergency room today because of a heart attack caused by a partially collapsed lung, which, in turn, was caused by his continued smoking despite end-stage COPD.  This is sad, exhausting, and extremely challenging news for all of us to bear, especially given Dee’s fragile post-surgery state at the moment.  We will, though, make it through as we always have: Together–with love, deep admiration, and utmost respect.

Peace and blessings to all of you.  I’m sure Dee will be chiming in with a post either Thursday or Friday…

Love,

Kev

Kev Standing On Queen

Kev #18: Moving Through Terror (A.K.A. Wanting to Leave My White Knuckles in the Dust, Forever…)

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73560022 The love of my life goes under the knife at 10:00 AM PT, Tuesday, February 17th, 2015.  I can think of nothing more terrifying; I would trade places with my beloved in an instant.  She is my soul, my heart, my laugh, my life, my moral compass, my joie de vivre, my trusted partner in everything I do.  She is, simply put, the most staggeringly awesome person I have ever met (and, believe me, I know a ton of truly remarkable folks…).

Everyone has said that I have been a rock for Dee throughout this entire horrific process.  While I warmly accept this compliment in the spirit in which it is given, I fear that I may have, at times, been a superior actor–enticing people to see things as they might not actually have been.  By this I mean that I have been white-knuckling it for the vast majority of these past six-and-a-half months.  The possibility of losing Dee to breast cancer has been a terrifying storm cloud following me around every second of every day since 4:23 PM, August 6, 2014 (the time and date of Dee’s diagnosis).  Add to this the continually declining health of Dee’s dad and my mom’s emergent five-and-a-half-hour surgery on February 5th to repair a six-plus centimeter aortic aneurysm and 90%+ blockages in both of her femoral arteries, and it’s no surprise that my fingers have left deep indentations in the railings of the S. S. Kevin’s Life…  I sincerely cannot wait to move on to the next wonderful phase of my marriage with Dee.  She is the partner of my dreams–imperfect out in the real world, as all of us are, but most definitely perfect for me!

The other day, I had a tragic-yet-enlightening conversation with the manager of a Charles Schwab branch I frequent.  He remembered from a previous visit that Dee was undergoing treatment for breast cancer.  He relayed to me that his wife had just been diagnosed with stage four Non-Hodgkin’s Lymphoma, which is such bad news it hurts my soul even to repeat his words.  It felt good for me to be able to truly listen to him and hear his pain.  I also was able to point him in the direction of our amazing oncologic naturopath who helped Dee immeasurably throughout her treatment.  Although this gentleman was gracious in his gratitude, I could see that he was splintering inside–and, man oh fucking man, did I TOTALLY UNDERSTAND ON A CELLULAR LEVEL EXACTLY what he was going through.  My heart broke for this poor guy.  Then he said something that really caught my attention: “Cancer does do one positive thing, though; it brings you and your wife closer together.”  Not yet knowing what to make of this observation, I smiled politely, nodded, wished the branch manager and his wife good fortune moving forward, and drove home.  The more I thought about this seemingly innocuous utterance, the more I realized it did not, in the least, apply to Dee and me.  Our marriage was rock solid, passionate, fulfilled, and fulfilling to us both.  10+ years in, we were still madly in love–increasing our ardor daily–when m-f’ing cancer slammed into our relationship like a giant wrecking ball.  WTF?????  Dee and I went from being two of the most sickeningly-in-love PDA aficionados you’ll ever meet to being mired in a patient-caregiver business arrangement.  This transformation has been stunningly heartbreaking for both of us.  Luckily, a very dear friend of mine provided me with trenchant perspective.  She said, “Kev, your ‘real’ marriage to Dee is as strong as ever; it’s just on pause right now and has been temporarily replaced by this screwed-up ‘cancer’ marriage.  But, you guys are nearing the end of your cancer battle, and soon enough you’ll be able to release the pause button on your ‘real’ marriage and return to having one of the best romances I’ve ever witnessed.”  Amen!!!!!  That day cannot come soon enough…

Let me be perfectly clear about one other thing: I would not wish cancer on my worst enemy.  Seriously.  It is a wicked disease that robs you of all that you hold dear.  Most perniciously, cancer has stolen my peace of mind, my joy with my wife, and my normalized relationships with friends and other loved ones.  I continually feel guilty that I do not have enough time, energy, mind space, or bandwidth to maintain all of my external relationships the way they should be maintained.  My valued clients must take precedence, of course, but that temporarily relegates others–who are indispensably dear to me–to the back burner because, for these past six-and-a-half months, I have been overcome by events.  In areas where I almost never made mistakes previously, missteps have become more common.  I know this situation will improve soon, but, until then, I ask for your patience, understanding, acceptance, and forgiveness.

In her most-recent post, Dee mentioned being amazed by people’s generosity of time, treasure, love, care, and spirit throughout this entire horrific ordeal.  I echo her sentiments with abundant gratitude.  All of you–in ways massive, tiny, and everything in between–have made invaluable contributions to Dee’s cancer care and ongoing recovery.  Without you, Dee’s prognosis would not be as good as it is.  We are now more than 70% of the way to our grand total fundraising goal, and, assuming all goes well later today during Dee’s surgery, she and I will be one step closer to regaining our charmed life together.

Please, hold Dee in your hearts all day and–whatever your faith/religion/spiritual path or orientation–propel her toward good health and happiness on the wings of your prayers and heartfelt wishes.  Dee and I are eternally grateful to each and every one of you for all you’re doing.

My sweet woman, you are the light and love of my life.  My existence is meaningful because you are an integral part of it.  Tears come to my eyes whenever I even remotely contemplate life without you.  Since I, at the relatively young age of 44, am not yet ready to spend decades crying, you damn well better do your best to kick butt in your surgery so you can finish kicking Triple Negative Breast Cancer’s ass!!!!!  Along with my mom, you are the strongest woman I know.  I love you deeply, madly, passionately, and forever.  Come home to me always…

Love you, Kev

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Dee- Post Valentine’s Blues and Pre-Surgery Blur

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Well, it’s been a while, and I’d love to catch up. The last three weeks have been a blur of activity and forced rest. (That’s sometimes Kev encouraging me to rest, other times me just finding myself tucked in PJs and bed before sunset.)  

A/C really did kick my ass. last chemoI had lofty plans to do a visual blog, all about A/C, and I’ve got all the photos but now it just seems I’ve moved past it, shaken off the 10 day hangover that accompanied my last treatment, and no longer anything I want to focus on at all.  The photo here is me, crowned chemo warrior, on my last day…and right before I passed the crown on to another brave soul on her first day of treatment.

Maybe that’s good, that I’m over it now…as I have surgery tomorrow (as long as I’m cleared for take-off today after my Valentine’s Day sinus infection, more on that in a bit:/).  

I came right out of the chemo fog and slog into mad Silent Auction organizing, planning and accepting massive amounts of assistance…I had NO IDEA how much work was involved, and without several key Auction Angels the event would have never, ever happened… (Thank you everyone who helped set up, and run the auction with me, especially Jen, Jessy, Merri, Ruby, Lily, Carri, Sandi, Marty, Miranda and Molly, Felissa, Amber and Michelle- and of course my Kev!).  Set-up alone took over 20 hours between Merri, Jessy, Jen and me! (Oh and Kev wanted to help set up, but his mom had major, emergent surgery that day…so he spent 14 hours at the hospital instead…Mom is fine, thankfully, but that just added to our Auction week stress, and neither she or my dad were feeling up to attending, which was sad for all of us.)

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The Dance for Dee was a lovely, successful and heart-warming evening filled with fancy Mardi-Gras masks and beautiful friends and family.  We had over 120 auction items donated, and many of the folks who attended also donated items and delicious catering…  We had @90 happy shiny people attending, including 5 kick-ass teenage volunteers!  I think everyone had a good time, dressing up, dancing and feeling good…

Oh…and the generosity and support of our community changed our lives. That happened, too. We raised a little over $15,000 in one fabulous night!

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Cancer brings out the absolute best in people, I’ve found. Maybe not every minute of the exhaustive process (at least not from the cancer warrior and the family immediately concerned, not all the time) but in general, wow. I’m really blown away  by the innate goodness of people, at least my people;-).  I’d say 90% of those we asked for a donation not only gave generously, but more than expected…and then a lot of people showed up and danced and brought home other people’s auction donations as well! Our little warrior family, Kev, Jay, Charisse and I, felt deeply loved, cared about, supported and celebrated at our Dance for Dee- and our folks, Don and Antoinette, felt the effects from their spaces of healing.

Other cancer warrior families deserve this level of support and goodness, though I’m sure Kev and I are blessed and very fortunate to be experiencing this. I am so ready to give back…been talking, visioning and refining the Cancer Doula offering, and with potential partners!  I think it might need a new name though… (cancer doula works for me, but not everyone knows what a birth doula is, much less re-framing the term to serve a new population).  Any suggestions or flashes of inspiration, let me know!

OK. So why the Post-Valentine’s blues you ask? I knew you wouldn’t let me get away with dropping that and then not addressing it;-). Well, you know how expectations usually ruin what is? Yeah me neither.

Kev and I had only a little window of time between auction craziness and surgery unknowns and recovery. That little window happened to fall on a fabulous 4 day weekend, which included Valentine’s Day and expected 80 degree perfection in our little beach town. ( I know, it’s Feburary. Don’t hate us, East Coasters)

So, everything’s great, right?  We had time, and the intention to be languid and easy-going, maybe a romantic sunset burrito on the beach with the dog on Valentine’s and then drive to Big Sur for lunch and light hiking the following day…the Monday off was very convenient as we needed to be at UCSF too damn early to be prepped for surgery Tues morning…so the option to stay with family on Monday night was promising to make our surgery day a little easier than getting up at 5 to drive up the coast, if the butterflies in my stomach didn’t get me there on my own.

Then, I woke up on Valentines sick as a dog. Sinus pressure, ear-ache, fever of 102 really crappy sick. So, once again, we give up our holiday expectation of romantic time off together for Kev to nurse me…popsicles, thermometers, anti-biotics, the whole bit. No beach, no Big Sur, no beach time. We’re both pissed as we really needed this weekend to reconnect, relax and get ready for what’s to come. It also means possibly no surgery if I can’t resolve my mess before Monday PM.

Fuck!

Not that I’m looking forward to surgery, particularly. I just want to get it over with, and get my life back. Or start my new life…either way, I want out of this status as cancer patient and on to survivor.

Oh yeah. I’ve looked at the data, and the higher re-occurance risk factors of TNBC, and I feel most comfortable with a skin and nipple saving double mastectomy with reconstruction.   I really want to avoid radiation, and as long as my lymph nodes are clear or close I can. A lumpectomy just isn’t enough, and maybe a double mx is too much but for the next 3-5 years (the highest risk of TNBC returning) I’d be a tentative, worried wreck…and I need to move on, with strength and as much confidence as I can get.

I know Kev is worried, and maybe even thinks I made the wrong choice- more surgery than I might need, more invasive, more risk, longer recovery…though I don’t agree. That’s hard, on both of us. Like any man supporting a woman and her right to choose what happens to her body, he feels a bit helpless, I think…especially as he loves my body and the woman inside it. He also fears change, to a degree, though he’s good at moving through change as it’s actually happening. As he’s my incredible husband, and the one I want to grow very old with, I want him to love me and my new boobs, and let go of worry about my re-occurance too. I want a lifetime of happy holiday weekends, so many that losing one to a damn sinus infection doesn’t make us feel like we’re at a breaking point, or at least a loss to our stability and our mental health. He’s been taking care of me, and his mom, and my dad, and his business, since August, without a break. His unending support has been truly amazing, and I know it’s exhausting. I know he can do it, and he is doing it well, but we all need some off-leash time, you know?

So…since I didn’t actually make him the card I planned, here it is…

IMG_4814Honey, you’re the best. I could never imagine going through this without you… Thank you for your big brains, generous heart and strong shoulders (and other parts I won’t mention here but will pay attention to later). I promise, we will move out of this cancer moment and into a healthy, more care-free life together…and if shit ever hits the fan in the future, I will be your rock, as you’ve been mine. 

Happy Valentine’s Day

Love, Your Dee

Dee and Kev Joint Post #4: The End of the Beginning and the Beginning of the End…

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Bud am 31st

Ready to take the next big leap…

Dear Family: Both of us will have more-robust posts coming soon.  For now, just a few brief updates…

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Dee handling it all like a CHAMP!!!!!

1. Today, Wednesday, January 21st, is Dee’s final chemo treatment.  Yaaaaaayyyyyyyyy!!!!!  Can all of you please send along warm messages, cyberhugs, and some internet love (no, not THAT kind–get your minds out of the gutter!!!)? 😉

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A gift-certificate donation to our Dance for Dee Silent Auction from Primrose and Lace in Capitola…

2. Also today, Dee must make some big surgical decisions.  Please lend your support as she strives to strike a wise balance.

3. Please keep Dee’s dad, Don, in your thoughts, as his health has been declining recently.  He is trying to remain strong for Dee, but doing so is becoming more and more difficult for him each and every day.  He does LOVE his girl, though!!!!!

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Dee and Don–XXXOOO

4. Can you please transmit some good vibes to Kev’s mom as well?  We discovered last Friday that her previously quite small aortic aneurysm has grown approximately 50% in one year.  This is not the best news and is probably going to necessitate that a procedure be performed sooner rather than later.  Luckily, Mom has one of the top interventional cardiologists in the country as her doctor, so, even though scared, all of us remain optimistic. 🙂

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Mom loving and living life…

5. Please join us for lighthearted laughter and scintillating celebration at the upcoming Dance for Dee and Silent Auction on February 7th.  Dee and Kev both need to blow off some major steam, and it will be so much more fun to do that surrounded by joy-loving friends.  Tickets are available now by clicking on the hyperlink immediately above.

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One rockin’ New Year’s Eve with Todd and Sally!

Much love and deep admiration always,

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Jammin’ at the Fillmore Jazz Festival in SF…

Dee and Kev

Dee and Kev Joint Post #3: Dance for Dee and Silent Auction Fundraiser February 7, 2015

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Dear Family:

Please help celebrate Dee’s ongoing recovery and resurgence from Triple Negative Breast Cancer by joining us at the Dance for Dee and Silent Auction fundraiser on February 7th at gorgeous Black Ridge Vineyards in Los Gatos.  Dee is really looking forward to putting her chemo journey behind her (her final treatment is January 21st).  Come dance with her so she can blow-off some steam prior to her surgery…

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The auction items that have been donated so far are ABSOLUTELY INCREDIBLE, and we don’t want any of you to miss out.  Your ticket includes admission, wine tasting, scrumptious heavy appetizers, and dancing to a professional DJ!!! 🙂  Please check back here soon for a unique page dedicated solely to the auction and its supporters.  In the meantime, here is the link to buy your tickets:

Dance for Dee and Silent Auction Fundraiser Invitation and Ticket Purchases

Please don’t delay too long, as there are only 150 tickets available total, and we definitely want you celebrating with us!!!

Take good care.  Thank you for everything you’re doing to help us.  Now, let’s have some fun!!! 🙂

Kev #17: The Most Intense Roller Coaster of My Life

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Kev Standing On Queen

A nascent new year gives one pause to reflect on what has been and ruminate on what’s to come…

Nobody in their right mind would chastise me for dubbing 2014 the incomprehensibly worst year of my life.  My father-in-law suffered a heart attack, which necessitated Dee and me cleaning out his house of 20+ years over the course of a couple of weeks (he and Dee’s mom were quintessential pack-rats) and moving him up to live with us–a not unwelcome, but definitely unexpected long-term houseguest.  Subsequently, Dee suffered a major infection of her lower gum that caused her to lose two teeth.  Happily, she is chomping away again with her brand-new implants.  She is now part lovely, endearing wife and part Terminator!  Then, of course, Dee was diagnosed with rare and aggressive Triple Negative Breast Cancer (TNBC) on August 6th.  Worst day of my life, rivaled only by that September morning in 1989 when my mom called to tell me that my dad had  taken his own life…  You might think it couldn’t possibly have gotten worse, but, alas, you would be wrong.  In mid-December, just a few short weeks ago, our 15-year-old niece–not related by blood, but chosen and very dear to us and our daughter–hung herself.  Because Dee is who she is, she absolutely, positively, 100% insisted that we travel up to Portland to grieve with and support the parents and two younger siblings of this dear, young girl.  Mind you, Dee was–and still is–in the midst of AC chemo treatment.  She was–and still is–severely fatigued and extremely immunocompromised.  Yet, she willed herself to survive the trip and ended up making a hugely positive difference in terms of helping that family begin to come to grips with what had happened and start a healing process that is going to require a Herculean effort.  As you might expect, Dee got sick upon our return to Scotts Valley and has spent the better part of the past 10 days fighting off pneumonia.  On at least two occasions, she was within a few hours of a forced hospitalization.  So, pretty shitty, right???

Well, there is a flip side…  2014 could also be viewed as a year filled with learning and consumed by spiritual and emotional growth.  Dee’s dad coming to live with us has enabled the two of them to rebuild a warm, loving, caring relationship that had grown stale and dilapidated from years of benign neglect.  I can’t come up with a positive spin for the teeth, except that it’s a pretty cool story when told at a party after a few drinks.  The fact that Dee did not die from TNBC is a blessing, and her Clinical Complete Response (CCR), meaning her tumor is no longer visible via an MRI, is a minor miracle.  We will not know whether Dee has achieved a Pathologic Complete Response (PCR) until after surgery, but, given her CCR, there is a good chance she will reach a PCR, which would greatly improve her long-term prognosis.  The suicide of our niece–a smart, beautiful, athletically gifted, popular, caring 15-year-old–is an absolute tragedy.  Truly, there is nothing good about this.  However, in the course of processing my own grief–and because I never want to attend one of my KRH student’s funerals–I came to, and shared with my staff, a couple of key realizations.  First, if you work with or are around kids in any substantive way whatsoever, you are, by definition, their guardian.  This doesn’t mean you are their parent, but it does mean that you pay attention to them and their emotions; you notice when something is off; you speak with others about your concerns; and you absolutely, positively say something to the appropriate individuals if it is necessary and productive to do so.  Blithely ignoring warning signs and/or remaining silent in the face of overwhelming evidence to the contrary can be deadly.  Take a stand and make a move; your actions may save a life.  Second, recognize what kind of kid you have sitting in front of you before you decide how to communicate with them.  At one extreme, certain youngsters are built like skyscrapers; they are constructed of concrete and steel and can handle a strict, Spartan approach.  They don’t require coddling and will respond to a firm hand.  At the other extreme are kids who are fashioned out of tissue paper and tailor’s thread.  Gentle breezes will enable them to take wing and soar to breathtaking heights, but blustery gales will rend them, causing them to implode.  Of course, there are many gradations between these extremes, so please pay close attention.  Take notes so that you can reach these youngsters effectively; lives do depend on it.

I guess the truth of the matter is that both of the above interpretations of 2014 are correct.  By nature, I am an optimist, an alchemist who is always trying to transform lemons into lemonade.  However, I do not have blinders on; the world is a rough and unforgiving place where really bad stuff happens to good, innocent, undeserving people.  Just look at Dee and my niece, both of whom I hope you will carry in your prayers…  There are no rational explanations for the tragedies that have befallen these two amazing females.  Although still facing a long, rocky, treacherous road, Dee is looking more and more likely to make it.  My niece, on the other hand, is already gone from this earth.  We must pay attention; we must remain optimistic; we must learn our lessons; and we must apply them to our future as best we can.  This is my mantra as I embark upon 2015. I’m prepared for a more joyous ride this year than last; let’s see if the universe is with me! 😉

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Much love and deep appreciation always,

Kev

Kicking 2014 to the Door/Blessings for the Best. Year. Ever. in 2015!!!

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I got buzzed with Dad and Kev!

I got buzzed with Dad and Kev!

Kev and I really want to say THANK YOU, on this day of looking back over our year. The hardest of both our lives. Thank you, to every person who donated to our care, who provided beautiful meals, gifts and uplifting cards to boost our spirits, to those who tended our souls, to our Chemo Angels (and Carri who organized them) who took me to treatments on those long days to UCSF, to every one of YOU who have blessed both me and Kev with love and care on this fucked-up cancer whirlwind….  We want to look forward to making 2015 a great year–past surgery and recovery and into the best year ever. That’s my plan, anyway. Shoot for the moon, right? If we miss, we’ll still be among the stars. I’ll tell you, though–YOU are those stars, friends. You’re incredible. We have felt loved, awed and humbled by your support.  Congratulate yourselves on being awesome, please!

This last A/C treatment has been by far the WORST for me, physically and emotionally… And I have two more A/C treatments in Jan, with cumulative effects, and then surgery in March. It all keeps getting harder, and I’m terrified, to be honest. I’m trying to gather strength from all of the support we feel now and all we’ve already received, and that helps, so much. I still have to do it, though. Sigh…

These days, I can’t really get out of bed much. Like 23 hours in bed, and an hour “up”.  (Like prison, actually, wow. I wish I hadn’t thought of that…) Acupuncture yesterday was my hour out in the yard, then back in bed till this morning when I took a 10 minute walk, and then napped 4 hours to recover.  I guess I’ve got 50 minutes left, give or take ;-).

My whole body aches, vomiting has kicked in, and my immune system got overtaken by a bronchial infection (I’ve been fighting off pneumonia for almost a week now).  My anti-nausea meds made my system of elimination shut down for 5 days, and I finally understand what “the chemo blues” mean.  I won’t lie: All of this is shitty–pun intended ;-).  Being as weak as I am right now, Kevin I have both realized we need some more helping hands in the house… We’re actually going to hire a postpartum Doula friend to come in for a few days every week in January, and take care of me like an exhausted mama and colicky baby all rolled into one. We need it. (Yay! I DO get my Cancer Doula!!! And if you were ever thinking of donating to our care, but haven’t yet, let me just say, now would be a fantastic time to pitch in..;-) 

Kev knows my care and his peace of mind are worth it, especially while he’s gone long hours for the new school term. He’s been my 24-hour nurse for the last 10 days, and it’s really worn us both down. He’s seen, heard and cleaned up messes no husband should have to. He even you-tubed how to massage my stomach in order to get my system moving again.  We were under a deadline to avoid the hospital, and man, does he have great hands!  I haven’t been at my best, so he’s had to be…there’s a limit, though, and we’ve reached it.

Meals have been a life-saver, and we’re humbly hoping for some more meals in March, to help with my post-surgery recovery, if that appeals…

We’re getting our first Silent Auction item donations from friends and local businesses–an awesome Cruzer skateboard from NHS and a gift certificate from Hula’s Grill!  We have some designer/vintage clothing items coming, Coach sunglasses, world-class (Kev-approved) wine, and some Giants suite-level baseball tickets lined-up too.  I’m beyond thankful I have dear friends helping organize donations and picking them up…I can’t do more than dream about such tasks right now (though that might be a part of the Cancer Doula’s role, eee!). Bless you, Amber, Caryn, Desmond, Teresa, and Ruby!  And, Lily, your Clothing Exchange Benefit is going to be AWESOME as well!  I’m praying I’ll feel well enough to come…will send great clothes if I can’t.

Please do Save the Date for our Dance for Dee, Including a Silent Holiday Re-Gift Auction to Be Held at Black Ridge Vineyards in Los Gatos; Saturday, February 7th, 2015, 3:30 PM – 8:00 PM: Tickets go on sale next week…. Also, got a wonderful item or service to donate to our auction? Please click here for the Donation-Ask Letter, which includes details about how to become a valued supporter of this gorgeous gala! Jen, you rock!!!

Thank you, everyone, who is holding healing space for me to get through this with grace and strength…(something I don’t have at all right now. I’m a snotty, weepy, whiny mess. So if you could keep holding just a little longer….:)  All of you are in our thankful prayers always, and someday, when we can, we’ll be paying it forward.

We brought some of your love and support with us to those who needed it in Portland last week, as we coped together with the grief of losing a beloved 15-year-old girl to suicide. I know that grief contributed to my current hot mess, but my heart wouldn’t have survived staying here, knowing I could be there, helping.

Grief is a necessary and, ironically, healing process, as is cancer treatment, and I’m IN it, believe me.   I am so damn sick of being in process. I’m going to propose this New Year’s Eve is the end of some of that processing, and my 2015 starts with renewed health and optimism, and golden opportunities.  (Golden wand waving over my cute little bald head. Shower of pink sparkles covering up my vomit bowl and tissue box. Bippity Boppity Boo!) 

Alright. Feeling the shift happening. My hour’s up. Glad I could spend it with you;-).

Here’s to 2015 starting as a Healthy, Positive and Abundant new beginning, for all of us!  Blessings, Dee and Kev

Dee~ Happy Anniversary, Baby

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wed5Well it’s December 17th…ten years ago I got to celebrate one of the happiest moments- and best decisions- of my life. I got to marry Kev;-).  Who would have ever thought, ten years later, we’d be battling breast cancer?

Needless to say, we need a do-over anniversary…(and by that I mean time on those stilt huts in Bali right over the water with glass floors to see the sharks swimming under you while you sleep do-over, are you feeling me?) A friend rightly re-framed this for us already, along with a bouquet of flowers, reminding us that my tumor-free MRI results were the best anniversary gift we could hope for, and of course she’s right. (Bali sucks, anyway!) Seriously, though. Best gift ever, because it gives us more time.

Unfortunately, we didn’t make our Pink Tutu challenge, though I do want to thank all of you who donated to my cancer care in hopes of that specific result! It all goes to the same desired fund, and you helped stabilize our family in the middle of this cancer storm.  (I know, he set the fundraising bar really high to avoid having to bare almost all, even for my sake;-). Canny man!)

I would have loved the whimsy of Kev in nothing but a fluffy tutu under the Golden Gate Bridge, (He won’t budge, hmmn….),  I get a different Anniversary gift, and one that means much more, and lasts longer.

I have his love and support.  (Yes, Dear Reader, I hear you in  my mind…”DUH”, you say, “Have you read his BLOG?!”)

Let me tell you, he’s got very broad shoulders, a heart of gold, and he knows me, really well.  You see, it’s not just chemo we’re dealing with on our 10 year anniversary…

We’re losing someone we love dearly, today. In fact, very old friends who helped us celebrate our wedding, 10 years ago, are losing their teenage child today, who is in ICU, and unresponsive without life support.  I was blessed and lucky enough to have attended this child’s birth, 15 years ago, and I’ve loved this child and family as an extension of my own ever since, fulfilled by my honored role as Auntie… We’ve even lived together, all of us, shared so much history I can’t see how the future will look with this black hole of loss, even when we’re all together, because we won’t be all there, you know? The world is a darker and lesser place today.

Who would’ve thought, at my wedding ten years ago, this is where we’d be, any of us? We’re all devastated and heartbroken…

Well, I woke up again, and that means I’m alive, and so now what?  I followed my usual and now familiar pattern in crisis.  I have a total breakdown, cocoon in, and reach out.   (Rinse and repeat several times). This process takes a varying amount of time and intensity, and I’m going to do whatever needs be done…I’ve learned the hard way skipping steps is NOT going to work, for me anyway.

Once I do get through the worst of it, or at least the breakdown/cocoon/opening up process becomes more manageable, I survive a crisis by re-framing the situation for the best possible outcome available in the moment.  (Very Birthing From Within, if you know what I mean…as I’ve heard it said, birth is my spiritual practice, and I guess here it is in a nutshell, as mom, doula, cancer warrior and heartbroken auntie). 

Here’s the thing. I’m stuck on the re-framing bit.  There is nothing remotely fucking positive about losing a child. Nothing.  It’s tragic, nothing more or less. Every parent’s worst fear. I’ve never felt so much loss in my life, and I’m not even blood related. How do you ever move past the loss of a child, all those shared memories and bright potential, live without that star that went dark?

Well, you don’t, I think. What I’m coming to is being grateful for what I can do- I can maybe make a small positive difference, and be in service to those I love, right now, in crisis, and in more constructive ways in the future. Kev and I talked about how our loss is a huge reminder and renewed responsibility to really love up all our vulnerable children before they go off on their own, into this dangerous, inexplicably fucked up and beautiful world. There is so much pressure on our kids out there, growing up in this world of instant everything, being so plugged in and on all the time…  Kev and I want to master and pass on some shielding life skills necessary for his students and our extended family of neices and nephews, maybe mindfulness based stress reduction…maybe we’ll just take them into the woods to get muddy and unplug on a regular basis. We’re thinking.  While I know this will be valuable (for us too) it still feels so fucking inadequate. Right now, that’s the best re-framing I’ve got. If you’ve got more positive reframing for me, comments and suggestions welcome. Links to process and survive loss for young children needed, too- good ones. I’ve seen a few I wouldn’t pass on…sigh.

When in doubt, my default is always go to gratitude. My big strong husband held me while I broke down, and helped me cocoon in. Kev and I and our daughter are driving 10 hours to share service, give comfort and make our small positive difference…and be back before my next chemo treatment on Christmas Eve. And Kev’s doing very well with an inspired focus on reducing stress- “prioritize what you need to do, be present and do it well, and don’t worry about or anticipate the next task before it needs doing”. I’m super proud of him, and it’s really made a difference in our crazy lives.

I love that man, and I admire him. He’s absolutely the one I need in a crisis, and I know he’ll be there. He’s the one I want to share happy times with too…  I guess, in the end, that’s the only gift I could ever want, no matter what day it is. (Though if he ever wants to put on the Tutu, I’m cool with that too;-)

Happy Anniversary, Baby.

Rest in Peace, and may angels surround you always, dear S.S.  You’re forever in our hearts. Love, Auntie Dee

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Dee – Good News!!!

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cancer touched my boobWell, the last time I went to a new doc at my local oncologist’s office, I got very bad, terrible no-good news, presented in a crappy way. Yesterday, I went to a new highly recommended doc at the same local oncologist’s office, and got the best news ever in a very unexpected way, and with a hug! Some preliminary results (tomorrow, Kev and I receive the FULL story from our UCSF docs) from my last MRI Dec 4th were in, and showed my tumor is gone!  My fancy, state-of-the-art, face-down, bare-breasted, $8000 MRI couldn’t find a tumor. Hallelujah!

Can I say it again?  It’s gone! Melted away, loved away, dissolved by chemo, prayed away, destroyed by my killer cells, envisioned away, done and gone.  I’ve been told so often it’s the extra life changes that make the difference between surviving and thriving, and not. So yeah, I completely changed my diet.  I released physical and emotional stress by going off-call, learning Reiki, practicing healthy visualizations and mindfulness. Jumping into the emotional boot-camp that is battling cancer  I accepted chemo as a beneficial force in my body. You know what? Even if I had been doing all that and more, if I’d been alone, isolated without my amazing community,  I don’t think I’d be getting the same result.

I think love healed me. YOUR love.  I have NO idea how I could possibly return, repay or even adequately express my gratitude for the healing energy that has come to me…in the form of hugs, prayers, cards, and beautifully prepared meals delivered to my door (I feel so sorry for my husband now that he knows what great cooks the rest of you are:/). Without my Chemo Angels who all sacrificed 12+ hour days driving me to UCSF and back. Without the love of my sweet husband, and my tiny but absolutely mighty family. Without the gorgeous flowers, thoughtful care packages, priceless gifts of time and energy and listening hearts…friends making our Dance for Dee happen Feb 7th…I wouldn’t be here now. You healed me.  Yes, YOU!

My tumor is gone, thanks to you.  Love is healing for the giver and receiver. 

My first question was of course, “Do I still have to do A/C?!”  The answer was… sorry…yes.  Just because I don’t have a tumor doesn’t mean I don’t have cancer, and cancerous cells floating in my body just make tumors again. (That ain’t happening folks!).  Triple Negative means I don’t have the option of drugs to suppress cancer after chemo and surgery, so we need to eradicate the cancer my MRI can’t see…and yes, I will need surgery, of some kind, too.

Emotionally, I’m feeling absolutely relieved and thankful the Treatments are working, and that I’m in such good hands, with my UCSF team, my naturopath, my acupuncturist…I know not everyone has a team like mine, or are blessed with the kind of support system I am… I also know I am just really fucking lucky. I have loved two young and beautiful women who lost their battles with cancer, Peetie and Lisa, and it’s so not fair.  NOT FAIR!  Why couldn’t they get the good news I’ve received?  They did the hard work. They were loved, just as much or even more than me. They had important work left to do too…Sigh.  Who lives or dies feels arbitrary, and that’s terrifying, isn’t it?  And so fucked up.

I see cancer like a tornado…it comes without much warning, and cuts an unpredictably destructive path…you never know where it will hit, countless homes devastated, and there, standing in a sea of debris and lost hopes, even on the same block, there’s a house or two absolutely untouched. I’ve also heard of cancer being described as an indicator of internal climate change, our bionome completely out of whack, a mirror of our greater ecosystem. We’re canaries in the global mine.

Right now, even though I’m beyond thankful, and celebrating my good news, physically I’m feeling worn out and worn down. I have about two hours of energy a day, and between the hot flashes, tummy trouble and joint pain,  I can’t wait to be done with chemo!  I won’t lie, this sucks! (It’s working, you’re almost done, welcome it in, just breathe). 

Mentally, I’m trying to get my questions answered about the best surgical option for me…there are a lot of variables, and not enough data for TNBC recurrence rates to make a clear decision, yet.  But surgery of some kind in Feb. Maybe multiple surgeries. Maybe radiation.  It’s still windy here…but by next summer, I will be free of cancer and done with treatment.

I want to figure out this “cancer doula” vision. It’s necessary, for those in the midst of the storm, those devastated by loss and those lucky enough to be left  standing.  I want to take all this healing love I’ve received and pay it forward, hard.

I will be free of cancer and done with treatment by next summer.   That’s my new mantra;-)

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Kev #16: Our Week in Limbo Land…

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Dear Family:

Last week was big for us, and this coming Wednesday is HUGE!!!

On December 3rd, Dee completed her course of Taxol, which is the first of the two ingredients in her chemo cocktail.  My tough, resilient, lovely, and loving wife has handled these first 12 weeks of chemo with grace and aplomb.  While her bouts of extreme fatigue have increased, and even though nausea has slithered its way into the process a bit, Dee has continued to remain upbeat, optimistic, and surprisingly active.  This is a testament to who she is–to her strength of character and to her fortitude of heart.  Man, I ADORE this woman!!!

Then, on December 4th, Dee had her second followup MRI, the results of which we will receive this coming Wednesday, December 10th.  This one is a biggie, as it will provide everyone–us, our doctors, our nurses, and you–with a pretty clear idea of whether or not Dee is likely to reach a Pathologic Complete Response (PCR).  At this point, you may be wondering what a PCR is.  Well, let me help you…  A PCR is the point at which neoadjuvant (pre-surgery) chemotherapy treatments have been so effective that all tumors have disappeared completely (at least as far as imaging studies are concerned).  This means that, at the point of surgery, MRI’s and PET-Scans can no longer pick up any trace of the original tumors.  While this doesn’t mean that every single cancerous cell in the entire body has been vanquished, it does mean that the patient’s prognosis is excellent.  A note of caution here, though, which our oncologist was quick to point out to us as well.  A PCR is the gold standard for neoadjuvant chemotherapy.  In terms of percentages, a PCR is a 100%; however, if Dee is able to reach 75%+, she should be in good shape.  Please, though, do keep your fingers and toes crossed that Dee will be able to hit the 100% PCR mark.  I’m confident our amazing girl can do it!!!

The other reason we’re in major limbo this week is that Dee begins her AC chemo treatments this coming Wednesday, December 10th.  Euphemistically known as “Red Death,” the effects of AC have been described to us falling along a continuum.  Some folks say it is only marginally worse than Taxol, while others warn that Dee is in for the worst eight weeks of her life.  Given such a broad swath, Dee and I really don’t know what to expect, except that AC DEFINITELY IS going to be WORSE than Taxol; we simply don’t know how much worse.  Thus, I am making a simple request…

Please do not forget about us in the midst of this busy Holiday Season (not that you guys would, as all of you have been ABSOLUTELY AWESOME thus far).  My and Dee’s 10-year wedding anniversary is December 17th, and I would love affordable suggestions for us to celebrate our wondrous time together in a non-strenuous way (given Dee’s fatigue these days).  Also, Dee receives chemo on Christmas Eve, so please hold us firmly and dearly in your thoughts and prayers that evening.

Thank you so much for filling in our MealTrain up to January 18th.  That will almost carry us through Dee’s AC treatments, which end on January 21st.  Just FYI, there are still opportunities to hop on board our MealTrain from late January forward by clicking here.  Also, please keep an eye out for a Dance for Dee save-the-date email.  February 7th at Black Ridge Vineyards in Los Gatos is going to be a bangin’, barn-burner of a celebration of Dee, her life, and–most importantly–her recovery!!!

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Today is Dee’s mom’s birthday; she passed a little over two years ago. Dee loved living life and laughing with Gerri!!!

 

Much love to you all,

Kev

Kev Standing On Queen

Kev #15: Gratitude, Clarity, and Fear

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Apologies for what I believe is going to be a long, meandering post.  As my good friend Nick says, “Pull up a pillow…”

Ironic that yesterday–the day following a 13.5-hour marathon of chemo treatments and medical appointments in San Francisco, followed by another two hours of cleaning up dog urine and an overflowing toilet (no, I’m not kidding, although I wish I were)–was Thanksgiving.  So, what exactly am I thankful for these days…???  This is a difficult, yet extremely important question for me to ponder.

Most of all, I am thankful that Deidre, the love of my life and partner to my soul, is still alive and appears to be making positive progress toward beating Triple Negative Breast Cancer.  She has her second follow-up MRI next Thursday, December 4th.  This is a biggie, because it will give us a really good idea of how effective the chemo treatments have been thus far, indicate how much more effective the remaining ones are likely to be, and more fully inform us and Dee’s doctors about her best path forward.  Stay tuned for results and please send along your most-healing vibes.

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My 13.5-hour-long day with Dee on Wednesday reminded me again how unfathomably grateful she and I are for her “honeybees,” who have done yeomen’s–or is it yeowomen’s–work over these past three months by taking Dee to most of her chemo treatments.  Seriously, this is intense, scary, and important shit that must get done, and Dee’s “honeybees” have been life-saving angels.  Thank you!

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I am extremely thankful for all of you who have stepped forward with donations of meals, prayers, laughter, time, event-planning expertise, and money.  We deeply value all of your gifts; please know they are an integral component of helping Dee to heal.

I am thankful for the love and emotional support of my family and friends, without which I would be even more of a stress-case than I already am (I know many of you believe this is impossible, but trust me, I could go there…).

I cannot express my gratitude deeply enough to the KRH Education Consulting family.  Our clients have been beyond supportive and understanding, and my colleagues–Theresa, Kamal, and Raphael–have risen to the occasion in a stellar fashion.

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Pollock'sdinner fam

Most concretely, though, I am thankful that I got to take Dee to her chemo and doctor appointments this week, and that I am going to be able to take her to three of her remaining five–including her first, second, and last AC treatments.  Let me explain why this was, is, and will be such a big deal.

Wednesday, which is when Deidre usually receives her chemo treatments, is always the most difficult day of my week.  As most of you know, I run my own business (the aforementioned KRH Education Consulting).  Besides my family, KRH is my life’s passion.  I absolutely love what I do.  Helping kids fulfill their potential brings me more joy than most things in life; it unequivocally feeds my soul.  While there are many benefits to being my own boss, the one massive downside is that I do not have the protection of a large corporation when tragedy strikes.  I don’t receive paid vacation; I don’t have access to family medical leave; I don’t have a safety net of any kind.  This unenviable fact means that Dee and I have had to rely on the tremendous generosity of her “honeybees”–as well as that of our dear friends and family in San Francisco–to figure out ways to get her to the treatments she desperately needs.  It isn’t that I don’t want to be taking Dee to her appointments every week; in fact, I do want to be doing this because she is my love, my wife, my life.  Unfortunately, however, I can’t risk further damage to our family’s well being, and so each Wednesday my heart breaks as I watch Dee and one of her “honeybees” motor off to San Francisco.  My anxiety level climbs throughout the day until Dee returns home to me and I know all has gone well.  Because I’m a bit of a Type-A control freak, being forced by circumstances outside of my control to entrust Dee’s care to others–even though I love, admire, and respect them deeply–is unbelievably painful and difficult for me.  Feeling trapped is not fun for anyone, but, for me, it is uniquely torturous and persistently agonizing.  I appreciate you guys listening to–and truly “hearing”–me on this, as it’s a rough space to be in…

What I fear most these days is the upcoming time period encompassed by the dates December 10 to January 21.  On the 10th of December, Deidre will receive her first round of AC, a chemo medicine known as “Red Death.”  All who have either the expertise or experience to know have told us that AC is SIGNIFICANTLY MORE DIFFICULT to tolerate than Taxol, the course of which Dee will complete next week.  Everyone has explained to us that the eight weeks Dee is receiving AC are likely to be the worst of her entire cancer-care regimen.  We are hoping that this is a case of the anticipation being worse than the reality, but we really don’t know.  We could be in for eight weeks of sheer, unadulterated, overwhelming hell, or things could be just a bit more difficult than they have been with Taxol, although by no means impossible.  Again, we just don’t know, and, frankly, that’s the worst damned part (did I mention I’m a bit of a Type-A control freak…???).  A client and friend of mine, Sue, said something positive about AC the other day.  I’ve been holding her words close to my heart ever since.  “They call AC ‘Red Death’ because they’re referring to the tumor dying and melting away,” said Sue.  Yeah, I like that…  Whether it’s true or not, I’m sticking with it because Sue’s vision provides me with an optimistic handle to grab ahold of when I’m not feeling my best.

Please keep Dee and me in your thoughts and prayers throughout this Holiday Season, as we will you.  We promise to keep honing our still-developing skills as grateful and gracious receivers (haven’t quite mastered this yet, but we’re trying).

Much love and deep gratitude always,

Kev

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Dee # 12- Thanksgiving

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Life is never all or nothing…not all good, or all bad. but some moments are perfect, for their own reasons.  Yesterday was Chemo Treatment #11, a long day in SF, and Kev and I arrived home at 10:30 pm to a floor wet with dog pee and an overflowing toilet (yes, really!).  

Right now, Thanksgiving eve, I’m surrounded by loud voices, slammed kitchen cabinets, jazz standards on level 50 (so my hearing impaired elders can hear the music, and yell to be heard over it, thus insuring our own hearing will be just as bad but even earlier…). I’ve got half the house yelling at the tv (Go 49ers) and the rest fighting over the last stuffed mushroom.

I’ve been shooed out of my own kitchen, by my daughter and her girlfriend, who are following their own fancy handwritten timetable for the entire Thanksgiving meal that covers pages of lined papers.  It’s 5:30 PM, and I just heard one of them say, “Good, we’re halfway done”. (I think she meant peeling the potatoes, but I might grab more appetizers just in case;-).  

It’s about 96 degrees in here, triggering recurring hot flashes so I’ve changed out of my pretty holiday wear into a sundress (gotta set the heat at 78 to keep those elders warm,  even though the oven’s been on f450 or the last 4 hours).  I can’t drink alcohol,  or eat the pecan pie cooling on the sideboard, though the rest of the meal is absolutely tailored to my cancer-fighting (no sugar, low grain, low carb) existence.  I’m already running slow after a full morning of  cooking and delivering my famous cranberry relish around town  (this year with cinnamon rose tea-infused bourbon), visiting loved ones, and a happy hour at a lovely Friendsgiving gathering…  These days I have to pay for a busy day, so I better enjoy it to the fullest.   My joints already hurt, my sweaty head is way too sexy for my hat, the grand-dog is sporting a cone of shame and the other two dogs have ganged up on the cat, who now might not come home for days.

I don’t think I’ve ever had a happier Thanksgiving.

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My 22 year old daughter, Jay and her sweetie, Charisse are the absolute masters in my universe today. They researched, planned, shopped, prepped and are now cooking  our entire Thanksgiving feast, top to bottom (and cleaning as they go).  It smells divine, and I heard tell of a grass-fed organic butter emulsion slathering the entire turkey breast. My turkey is now having the spa day of my dreams, and soon I get to eat it all up!  I got to make relish and sugar-free pumpkin custard this morning – that’s it. That’s all I was allowed to do…  How awesome is that?

I can’t say I’m thankful for the cancer itself. But it sure does make me clear on what really matters- and this year, having my family be who they are, beautifully and authentic.  (And awesome, loud, particular, thoughtful, grumpy, generous, stubborn and nostalgic).   They’re loving me enough to work together and take care of me with an incredible meal, share memories old and new,  and keep me laughing all day.

Today, this moment, is just precious.  I’m not sure I would have received (or accepted, really) all the work my girls have done today, had I been well. Right now, this all feels like such a a huge gift, my little family (Dad, Husband, Mom-in-law, daughter and daughter-in-law) here to celebrate life- and specifically MY life- together.   They’re healing me, right here in this moment of joy and organized chaos.

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That’s a lot to be Thankful for….

Blessings to all of you and yours today, and everyday.

I got buzzed with Dad and Kev!

I got buzzed with Dad and Kev!