Hard to Swallow

hi all --

(this is another non-proofread missive.  i'm more weary than i am wary. with joy i send this to you and collapse in rebecca's arms.)

here's the short version:
* we're going to start radiation treatment tomorrow
* we're gong to start the new drug ("tagrisso" - what i've been calling tarceva 3.0) on wednesday
* solas is adapting well to formula: we got such good advice and then at the last second bought whatever organic stuff they carried at the store and our friend took charge and got him a bunch more breast milk anyway...when things settle down we may try to make our own or order some of the sweet stuff they have available overseas.

here's the longer-ish version:

* starting with the new drug - what a roller coaster!  we had friends calling their contacts at the supplier to try to sort out a way to get the drug donated to us by the manufacturer, and then last night a person offered to foot the bill for the first month - to the tune of $12,000...totally amazing.   they wish to remain anonymous so i'll say nothing more about that, but i just want to say thanks to them for being a ray of light in a challenging time, and thanks to all of you who reach out to us over and over with prayers and love for creating this little greenhouse of healing energy.  this little miracle incubator. this monastic oomph.

so i told our oncologist to order it, and got a message back that his nurse called the distributor of the drug and got them to give us what they call a "bridge supply" that will provide the drug at no cost for up to two months while the insurance bureaucrats wrangle things out.

so here we go!  when we started on the tarceva pills last spring rebecca had an Extraordinary response to it, as many of you probably recall.  her eyes started healing within 24 hours (which our oncologist had never seen before) and two months later our eye doctor said there was no remaining evidence of tumors in her eyes, which *he* had never seen before.

it wasn't a miracle of modern science, it was a miracle And modern science...and thanks for being part of it.

* in terms of the whole-head radiation.  we hadn't been talking to the medical folks about prognosis thus far.  because they don't deal in miracles like we are.

but because the side-effects of the whole head radiation seemed so potentially scary, we wanted them to be frank with us this morning about what the gains and risks are.  basically, how long would they predict her to live without the treatment, and how long would they expect with the treatment?  the doctor was clear that even people who get the full treatment sometimes only survive another two months, with people that perform really well making it to two years or so.

(i'm just going to say that as i write that line, i am stopping to take a breath and remember that our faith is in the Creator and not western medicine, and that one of the first things our doctor told us is that stage four cancer is considered incurable by medicine right now.

and so i breathe, and i find myself in this moment, in this place i'm in right now, hearing what's around me, and believing and trusting that this is unfolding to a moment of perfect connection, like waves breaking on sand to return their waters to the Source.  living forever is not the goal.  living faithfully is.)

then we asked about how people do without treatment, and the doctor said it was pretty bleak.  right now rebecca's having eye symptoms, a weird echo in her right ear, numbness on the left side of her face with sporadic periods of tongue numbness, nausea starting last week (she lost about 5 pounds in the last month or so) and just yesterday morning it started to get hard for her to swallow food.  this is the same rebecca that two weeks ago was thinking, "i think i can start swimming laps again, the rehab course at the pool isn't challenging enough for me."  so it's been a rapid deterioration, and the doctor thought that it could continue with things getting much worse over the course of just weeks.

and here's one thing that feels important -- rebecca and i and our friend (and chaplain) chuck talked our strategy over while driving into the appointment.  and rebecca said, "i'm just gonna pray."  and so it's one thing for a doctor to make scary predictions, it's another thing for prayer-filled rebecca to feel that resonate with her.  and she did.  she felt like that was true.


and so we're starting with the treatment tomorrow.  it'll be 10 days total over the next two and a half weeks.  the main early side effects are fatigue, hair loss and some skin burning.  the doctors expect it will help her with the symptoms she's been having otherwise, like the nausea and the swallowing.  the longer-term side effects could be short-term memory loss.  the doctor says that's typically mitigated in younger, healthy bodies like rebecca's, and that she hasn't seen personality changes.

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one of the questions rebecca asked was whether this would have happened if we'd just gotten the tagrisso earlier, or if the tarceva hadn't stopped working.  the resident we were speaking to, to his credit, said "probably not."

he then had to leave to get the top chief doctor. and we were alone in the room with each other and something energetic in rebecca kinda gave.  she started crying, and then sobbing, and then wailing, and then keening.  it was potent and it was beautiful in ways that are hard to explain.  we've been talking about mortality this past weekend.  we gave ourselves permission to say All The Things, not because we don't have faith that this healing miracle is unfolding, but Just To Say It.  to consider that, while God is perfect, our hearing of Her words isn't always.  and that if the miracle doesn't come, it doesn't mean that the Divine hasn't been with us on this entire journey.

and rebecca said, i don't know i think maybe i'm losing my faith.

and i said nothing

and rebecca said, you know i just don't know. i don't know anything.  i don't know anything except that i don't know anything

and chuck rubbed her back

and rebecca said, and that i could die.

and i said, that's not losing your faith.  losing your faith is when you say i didn't get healed and that means there's no god

and rebecca's face shined as she said, well i'm not doing that!  i know where i'm going.  i'm going to get closer to god and i want it to be on this earth and either way i'm getting closer to god.


i offer that simply to give permission to everyone to have that doubt.  it's okay to consider all the possibilities.  it might even be wise.  i don't know.  i'm not.

and my primary guide in this miracle journey is jesus, and he fell three times on his way to conquering death.  and this feels like our third fall. and the two options are: God reaches out to rebecca and brings her to Her chest and sets her back down on her feet, or God reaches out and just keeps holding her.

and so i know that if rebecca leaves us, well i'll just be sad then because of how much joy i've felt sharing life with her.
but i still believe this miracle is coming.
and we're still listening, and we still need your hearts and ears and arms and faith.

i believe in what rebecca heard in that church last spring.  i believe in the prayers of my nephews and nieces, and those whose faith is battle-tested.  i believe that solas' gentle belief that this woman he clings to will continue to be there.  i believe in the power of the healing touch of jesus, the living God.  i believe in the testimonies throughout the ages that his mother mary reaches through the veil to us, her children, with love and miraculous healing.  and i believe that prayer can move mountains.  and i say "mountain, move."

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there's so much more.  our days are novellas.  we're staying with our friends jason and riyana and their 8 month-old brigid (born just two weeks after solas, she was due about a month before him).  we're gearing up to head to brazil to see a faith healer there named john of god who works with the spirit of jesus.  and there's a couple alternative treatments we may try, and i'll write to you about.

but for now.  for now rebecca is asking for people to really focus their prayer on the best, healthiest possible outcome of these treatments.  and she asked if people could light candles at their places of prayer and send us pictures of them to us (as some of you have already so sweetly done unprompted because that's just how megan bradley and cypress fey behave), that she feels that looking at those before and after treatment will be therapeutic to her.

that's all
for now

in the name of the Creator
in the name of Your servants
in the name of jesus, healer
in the name of mary, mother

we give gratitude for the gift of life
we give gratitude for the return to perfect oneness
we give thanks for baby solas' ongoing health
we give thanks for the restoration of rebecca's eyesight
we give thanks for the healing of rebecca
we pray for the best, healthiest possible outcome in all of rebecca's treatments
we pray for grace for her partner and all her support team

in the name of Love
with gratitude
we surrender
in faith