4/7: pre-ramble - part I

i thought i'd take a minute to set down some of the events that brought us to this moment, just to get us all on the same page. so that as we move through phase II together, you'll know why we're praying the way we are.


today rebecca walked up a flight of stairs to take her first bath in a month and a half. today solas is still healthy. today we are home from the hospital. finding our way into a new normal with a rented hospital bed, a wheelchair and a walker we hope to phase out, and an oxygen synthesizing machine that we hope never to turn on.


it's like when you're riding in a boat, and there's a wake trailing out behind you, and it almost looks like more like something you're dragging than the pulse of energy it is. and then the boat comes to a stop and the wake catches up to you, and the boat teeter totters and you think, "oh yeah, that was an intense week."


below is part I of the pre-ramble. i'll finish the tale in the next post...


may rebecca's lungs and the rest of her body be clear of tumors

may her vision be restored perfectly

we give thanks for the continuing health of baby solas



so, rebecca (and i) got pregnant last july. mid-july. we were immediately very excited -- it was a very conscious decision we made to embark on this new journey, and the new life appeared in her womb at the first possible opportunity. a blessing.


soon after that, in early august, she noticed a blinking blue light in one of her eyes. it was intermittent - and apparently very pretty - and we didn't think much of it. and then in late august there was a moment where her vision got clouded. it was just for a few minutes, and it was just after she'd stood up quickly, so we didn't think much of that, either. pregnant bodies do a Lot of new things, why start jumping at shadows?


we were living in southern oregon at the time, and on the statewide health plan (many thanks to the generations of political rabble rousers who campaigned for universal health care, by the way, obamacare came to us with hardly a minute to spare), and we mentioned the eye condition to the midwife we went in to see. she scheduled us for an eye exam, but the wait was so long that we didn't get a chance to see the optometrist before moving to california.


..."back" to california, really. we'd left the san francisco bay area in 2010 for oregon, and felt called to return to the bay when an auspicious opening on some friends' land presented itself.


so, at the beginning of october we were headed to the hill country of the northern bay area, the town of cazadero, the community of golden rabbit ranch. our friends charles and star run a sheep ranch there, and we joined up with the effort. we were very excited to be living off grid and having that deep connection to nature that's just not possible when you're living closer in to the heart of the city. so that was very exciting, and an eye appointment isn't all that exciting, so we weren't fussed.


once we got there we transferred our health care, but that took a minute, of course. and then we mentioned the eye condition to the (new) midwife we went to see. and then she said we needed to have a primary care physician first, and that he could prescribe a visit to an eye doctor.


we remained basically non-fussed at this point. by the end of january, she'd had two more episodes of the vision blotting out, and the blue flash was happening more frequently, but she was also more pregnant. there was a universe of creation happening within her womb! it made sense that odd things might be happening in other places within her body. but we pursued the eye doctor angle anyway, just to be safe.


and so it happened that on thursday, january 29th she went in for a visit to the eye doctor. they did their normal eye-torture thing with the dilated pupils and the bright lights. and the good doctor didn't like what he saw. so he recommended a visit to a retinologist (the first of many professions whose existence i was about to be made aware of).


given how long everything had taken to this point, we figured it would be weeks before the retinologist could fit us in. but later in the day on thursday we got a call saying that the appointment was made, and it was for the following monday.


that felt surprising, but nice, and so away to the appointment rebecca went (driven by our dear friend rebecca sutton, because i was getting Really Tired of driving rebecca to All These Doctor Appointments). but the good doctor didn't like what he saw. so he recommended a visit to an ocular oncologist. and this would be someone in san francisco, at the university of california at san francisco (UCSF) hospital system.


[aside: i still don't know how this retinologist in the rural suburbs of the bay area was able to bounce us directly to the eighth-ranked cancer hospital in the country, but i will forever be grateful to him for that.]


given how long everything had taken to this point, with the exception of the retinologist, we figured it'd be weeks before we got into some place as high-falutin' as UCSF. but on tuesday we got a call that our appointment had been made, and that we were due into UCSF that thursday afternoon.


we in our naivete were getting kinda irritated at all these doctor's appointments. and driving three hours to san francisco to have an eye-cancer doctor check out the retina of an obviously healthy woman felt just like a waste of time. but we needed to go down to the bay that weekend anyway, as it was our baby blessing date that sunday afternoon. so, why not humor the doctors, get this sorted out and out of the way, and just be in berkeley a couple days longer than we'd planned?


so rebecca and rebecca and i trundle down to san francisco. the good doctor attacked her eyes with dilation drops and all the lights in the world, and then sat us down to tell us what he saw. what he saw, he said, could be lesions and could be tumors. and if there are tumors in the eyes, they most likely spread there from the lungs or the breasts. so he suggested a CAT scan of rebecca's chest to see if there were any growths there that might have spread to the retinas. if you know rebecca personally you know that she loves being in nature and wild and free and avoiding machines when she can. so, was there an option that's not something as big and plastic and whirr-whirr machine hum strange as a CAT scan? yes, it turned out there was. they could do a biopsy on her retinas by going in through the whites of her eyes with three different needles. without anasthetic.


so, a CAT scan it was...


we slept well that night (thursday, february 5th for those of you tracking the dates). you go to an eye cancer doctor, and he is going to tell you you have eye cancer. that's what he's used to seeing. it's his particular myopia. we weren't particularly fussed.


we woke up friday morning to a gray sky leaking teardrops and a phone message from UCSF saying they'd made space in their CAT scan schedule for us at 10:30am that day. i called them back and explained we couldn't make it, because rebecca had a chiropractic appointment at 11am in oakland. in her words the coordinator i spoke with explained that i would cancel the chiropractic appointment and come in right that second, and in her tone she explained that there was no time to waste.


this escalating series of urgent appointments was beginning to give me pause, but i was looking at a healthy, vibrant, shiny specimen of humanity. i found it really hard to believe there was anything serious going wrong.


but my heart was beating a little harder as we headed to the CAT scan. we were called on the way and told an appointment had been made for us with a high-risk obstetrician for that afternoon.


"high-risk." that didn't sound like us. really didn't feel like us, but we went. did the CAT scan, stayed on the UCSF campus, got a little horrible bite to eat in their cafeteria, and trundled over to the obstetrician, ready to be given a clean bill of health.


our obstetrician was dr. kirsten salmeen, and she gave rebecca a thorough examination and an ultrasound. it took maybe 45 minutes. the ultrasound was lovely, as it always was. something about seeing the being who is making rebecca's tummy move with those little kicks and hiccups always got joyous tears in our eyes.


and then the ultrasound was done.

and then dr. salmeen said, "your child looks perfectly healthy, has anyone discussed the CAT scan results with you?"

no, no one had.

<pause. she gathers her strength.>

"they found tumors in your lungs, it's highly likely that they are what moved into your retinas. we don't know anything for sure until a biopsy but it's 99.9% clear at this point that you have cancer, and that it's spreading."


your heart doesn't drop just then, not yet. not in that little darkened ultrasound room with the doctor stranger giving you this insane news. we asked some questions. not even any trembling in our voices. i don't remember any of the content but i know the doctor had to leave to set up our next set of urgent appointments.


nowhere is the right place to hear you have cancer, but a sterile hospital room might be the worst. you want a moonlight pool with the sound of a stream flowing into it, ancient trees standing sentinel around you, frogs and crickets weaving a tapestry of comfort that can really hold your pain.


you don't get want you want. you just get alone. we were holding on to each other with hands on arms and cheeks on tears and ten years of faith and love and trust being just what was holding us. being just what we had. ten years and you thought about the future a whole lot in that time, and in ten seconds you realize just how much you take for granted we were sobbing. telling each other it was okay to sob, that this is a big deal. holding each other. wailing. feeling the vice-grip of fear around my chest.




and i remember saying that we're not alone. we'll call in the big guns on this, we'll call my mom and have her pray for us and we'll get jesus and mary and they'll pray and we're walking a walk of faith and that's what we've been doing and that's what we'll keep doing and we're not alone. not ever alone.