Family, Connecting and Kindness

I had the urge to take a picture of something this morning that you all really never want to see. The surge of excitement was something only first time parents would really understand. Let’s just say I’m completely into my “big girl panties” now and walking, hiking, touching everything without pain.  I feel so much BETTER!   My eyes are driving me friggin nuts, though. I can barely drive. Time for another trip to Dr. Hamza, my lovely eye specialist.

But I’m also a little scared.  There was a tenderness when the echo cardiogram tech rolled her little echo mouse around my chest.  There’s a pressure to my liver that seems new.   What if Halaven doesn’t work?  I feel so good and yet, shadowed, followed.

ACK!  Let’s chalk all that up to imagination for today, shall we??

I’ve been catching up with old friends this summer and growing old family relationships under warmer, gentler attention.

I enjoyed this amazing gift of my Uncle Jerry’s death — time with his family.  There’s a gift to being a relative and yet not so close as to be entwined in the histories and entanglements of close family.  You get all of the love and none of the complication.  I’m so grateful for being able to witness my composed, fiercely determined, logical aunt as her playful, loving and completely unable-to-stop-giving girly self.   It is so clear to me why my uncle loved her.  I don’t think he ever stopped.  How could anyone who has seen that hidden, intimate Shirley?

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There’s a gift in being able to be present (thanks to medical leave), forgiven before even making mistakes (thanks to cancer and treatment side effects),  intimate (thanks to my loving and dedicated soul-sistah-cousin Kerstin, and her relationship building efforts) and distant (thanks to my Peterson stoic Scandinavian roots).   When you aren’t entangled, you get to see so much — the vulnerability, the fear, the guilt, but overall, the love of family members for each other.

Plus, people are just so KIND to me as a stage IV survivor.  Every interaction, with those close and with complete strangers, starts from a space of kindness.

In some ways, I can see my aunt more clearly and with more complexity than I could see my mother.  She is a 360 degree person.  With an internal life and an external life.  A life as a mother of a daughter and another life as a mother of a son.  A wife.  A lover.  A friend.  A powerfully connected, compassionate, heart driven girl and a powerful, stoic, I-am-an-island independent woman.  All things in one.

My experience as a mother has been that I have had to erase so much of myself in order to give my pre-teen and now teen daughter room to grow and separate.  I see this with my Aunt and my cousin.  I definitely see this now, in retrospect, with my own mother.  She worked so hard in her post-40 life to find the corner of her own-self that I would be able to connect to.  It was really a dance of my own becoming, my own sense of adultness, and her ability to see me as adult, to shed her skin and be vulnerable with me.

I have so say that she did most of the work.  Her work allowed me, still so uncomplete in my adultness at 48, to feel close to her.  To feel entwined with and yet unencumbered by her.

And I see my aunt doing that work with my lovely, fierce, passionate cousin.

And it’s SO HARD.  I see this amazing adult growing in my daughter.  She is the emotionally, psychologically and physically strongest person I know.  Honestly.  No hesitation there.  But she’s still 16, with such a very limited context of what the world can be and can offer.  So I cannot help but see her as a kid.    I patronize her.

And it’s so hard to figure out where to share my vulnerabilities in a way that is safe for her, that doesn’t burden her with obligations that she has no power over.

Camp Kesem, or, as we say our house, “Cancer Camp” became a nice watershed moment for us around this.  I wanted both of my children to go to Camp Kesem.  It’s an amazing camp for children and young adults with a parent who has cancer.

The camp was conceived of and designed by a university student who had lost her own parent to cancer.  Now the camp is nationwide and any college student can apply for a starter grant to get a chapter started at their campus.  The counselors are all college students and 80% of them have had a parent with cancer.  The camp is entirely free and each college counselor has to do a HUGE AMOUNT of fundraising for the privilege of becoming a counselor.  These are COMMITTED young people with genuine, authentic empathy.

My daughter was at the top end of the camper age group, 16.  And she was NOT GOING TO GO.   My daughter withdraws from conflict.  And she does a damn good job of running her own life, so there are few opportunities to find a real reason to fight.  This was our chance to fight.  I think I did a good job of staying in my own vulnerability, telling her I needed her to go because I needed to know I had done everything I could to get them connected to resources that would help them with my death.  Insert a LOT OF TEARS here.  She did her best to explain to me why she couldn’t go.  And I won’t share that here, because that’s her story.

It took three days of sleepless nights and tears for both of us, calls to therapists and doctors and really great feedback from friends and family to get me to the space where I knew I needed to let her not go.

And she’s been so kind to me.  By sharing my fears and my tears, I allowed her more space to be present with me.

It’s a very difficult dance.  Something I think is specific to mothers and daughters.  And sometimes I hope so hard that she ends up having a daughter sometime….not just “so she knows what it’s like” but so she understands the level of love and compassion and effort we mothers create.

I didn’t really understand until I had a teenage girl.

And I’m sure there’s much more to learn.

 

 

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Good-bye Xeloda!! So long diapers! Hello SEX and SWIMMING!

I have had severe diarrhea for SIX MONTHS without more than a day or two break every month or so. There is a lot that can be managed with adult diapers and medication.

And,of course, avoiding anything that resembles PNW healthy (leafy greens, whole grains, raw foods) definitely helped.

But sex and swimming were both activities that never really became a  reality.

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My scans still read “stable” — but crazy high tumor markers and some deeply experienced based intuition on the part of my oncologist say let’s-stay-ahead-of-this-and-switch. Both Xeloda (my current chemo) and Halaven (my next chemo) are chemos you aren’t even allowed to take until you have enough “chemo failures” under your belt. So this definitely isn’t some sort of celebration. Both Xeloda and Halaven have  11% response rates. But I got 6 months on Xeloda. I might get lucky on Halaven, too.

Halaven causes CONSTIPATION!! WHOooooooHOOOt!! And NO HAND/FOOT SYNDROME! Swimming! Sex! Long walks without sudden explosive emergencies!!

Yesterday my podiatrist, while repairing the THIRD ingrown toenail I’ve had in two months, mentioned that I remind him of an old car he had once which kept having the same expensive issue come up time after time. Yeah. Thanks, Xeloda and your Hand/Foot Syndrome!!

Speaking of cars, I realized this morning that I am in LOVE now with my beat up minivan. I love the old peeling bumper stickers, the tears in the carpet, the stains of past kid-disasters and now, the deep, acid, fruity smell of dog treats.

And you know, I really do rock those diapers. What a funny thing to have this bleeding, tender, boobless, diarrhea ridden tired body and be so dang PROUD of it. We are alive, people!

My body walked through that “you could die” prognosis and found an unlikely, rare skinny trail to continuing. Every step now is a bonus, a gift. Go BODY!

Yes, I might lose all of my hair again. Yes, this chemo might not work. But we’ve found some paths out of dark forests before. And the view of swimming in the sunshine and having sex with my husband (kids are going away next week, by the way!!) is just pretty dang good.

Up and Down

“I can give you that number. Are you ready?”

Every time I hear those two sentences I’m hit with a tiny ripple of panic. I’ve been living by the “three things” rule for years now. If you want me to remember a third thing, I need to write it all down.

But last week, miraculously, I could remember phone numbers! My CID (Chemo Induced Diarrhea) eased up a bit. I was gaining weight (didn’t need to gain weight, mind you). I had more energy. I even went SWIMMING! And I started remembering things.

Good medication mix? My new fetish for two cups of Greek yogurt each morning? Nice after effects from the Gamma Knife? Who knows!?

It was great. But now we’re in the end of the chemo cycle and the massive side effects are back, bigger than ever. Yes CID. I’ve a new (the THIRD this summer) in grown toenail. My hand/foot syndrome or neuropathy makes even small bumps into my fingers and toes feel similar to hitting myself with a hammer. My eyes!! Yeowch. Dry, drippy, sore, light sensitive. I’ve small infections everywhere – in my earlobe, in my nail cuticle, in my nose. Every “fragile” tissue in my body is yelping a bit. And I got a bad haircut. It’s really bad. Maybe even super short haircuts deserve a more professional approach than a random Supercuts visit.

But!! I am no longer taking two hour naps! If I control my discomfort, fatigue magically lifts. I’m going back to work in the Fall! My attention span is stronger. I’m reading BIG LONG BOOKS. And swimming in lakes and playing with my dog and chasing Pokemon with my son (once). I’ve spent a lot of lovely weekends with lovely friends and family.

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And I’m going back to work! And I’ve been invited to New York again by Novartis!

So I feel a bit like my tumor charts.

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Up and down, kinda at the same time.

Yeah. We aren’t sure what’s happening. My liver feels healthier to my oncologist’s expert touch and it feels healthier to me, based on how I feel in my body. But I am pretty weak compared to my normal. I think that’s the CID, though. I try to imagine what it could be. Do my lungs feel cloudy? Any new aches in my bones? Heck, maybe the brain mets they zapped leaked dead cancer cells into my blood stream and messed with the results?

No clue.

So we did another PET Scan yesterday. I’ll let you all know next week what the results are.