Miracles Remix

Miracles Remix

Today’s Gospel at our Church was the story of Jesus healing the blind man—this story always grossed me out a little (spit and mud? Ew), but at the same time moved me, especially once I had a child who was going blind day by day in front of me.  As the deacon spoke during his homily today, my mind wandered back to when G’s vision was failing at a rapid pace.  Back then, if Jesus had offered some spit and mud for G’s eyes, we would have added that to the chemo regimen and showed the Pharisees some Jersey style onco-mom attitude if they had a problem with G getting healed on the Sabbath.

You wanna piece of ME?

Obviously, that did not happen.

But still—G’s vision improved. We aren’t sure why. Anecdotally, I think it had to do with changing chemos. Her tumors never got smaller after that first chemo fail, or the second chemo fail, or the third chemo stability/bone marrow burn out.  But her vision improved.

We gave BACK the Brailler.

A Brailler. G used to cheat and look at the dots to read things.

The only time I ever celebrated cheating. ;)

That was a miracle.

It wasn’t the miracle we prayed for. It wasn’t a clear cut miracle of complete healing or woohoo. But the day G told me she could see stars… “ you know, those tiny white things!”…that was a miracle.

She still has no peripheral vision in any direction. Her left eye still is weak (to her sense, she can’t see out of it, but she actually can). Within a narrow field of her right eye, she is correctable to 20/30. That is a miracle, based on the “counting fingers” report of 2004.

Making peace with miracles remixed is an ongoing work.  We’ve had other Miracle Remix kinds of days—March of ’06, when we found out the weird tumor thing G had going on after 18 months of chemo had NOT become stage four gliomatosis cerebri (a game changer, prognosis wise). We got to restart chemo #3. That was a miracle. The next 6 months AFTER that miracle day were brutal (Transfusionfest 2006, neutropenia-induced hospitalization, allergy to one of the chemo drugs), but it WAS a miracle.

My girls, with neurosurgeon Dr. Storm (the only guy

allowed in G's brain) and Research

genius Dr. Resnick(and his daughter), at Camp Sunshine.

Miracle Monday, 2012 – the day we found out the Avastin/Irinotecan/Temodar mix had dramatically reduced the tumor mass that had explosive growth while G was on the clinical trial.  I literally almost unraveled that day. That was a LEGIT miracle, we had never seen that kind of shrinkage EVER. We got to do nearly another year of that chemo, and it kept working (and has continued, after the fact to keep G’s tumors stable). Miracles.

Scientific progress—miraculous. Inspired. Fought for. I will take any kind of miracle that comes, even if it is ultimately in IV form in a day hospital, or in the skilled hands of a neurosurgeon. 

For me, one miracle--being able to talk to God again without using colorful language. And I don't mean red, orange, yellow, green, blue, purple. Or chartreuse. THAT was a different kind of healing miracle. Not the one I prayed for, but a gift that helped me keep on going in the face of extreme medical yikes back in '05 and '06.

yeah, not so much. I had no issue with

Jesus, just God. This is why I don't teach theology.

That guy with the muddy and healed eyeballs? He was grateful.

I am grateful.

Not going to lie, I would be totally cool with the complete healing kind of miracle. That just isn’t the kind we are going to get, and I have made peace with that, really.

But I do wonder, some days, if I am doing enough with the miracle of time we have been given.  Having more time is truly the greatest miracle of all.

As I type this, G is pondering what classes she should take at Community College (“Mom, what is “Aperture in Photography?”).

Time is the greatest miracle.

I don’t want to waste it.

Great Expectations

Great Expectations.

Is the worst book EVER, so don’t worry, I am not going to blog about that.

(Since I was long ago an English major, I can diss major works of literature with impunity, no worries!)

I have been pondering expectations. Maybe that’s an inaccurate way to say it. I have more been realizing that some expectations will never come to fruition (my 18th century farmhouse in the country), some are in jeopardy (will not speak of those here), some are worth fighting for (my history students CAN do what I expect them to do! They are awesome! So…Yeah!) , and some just have to be set free (my paperwork will NEVER be organized. It just won’t. Get over it, self).

Expectations can be empowering or paralyzing, and this is sort of what I’ve been pondering. I had a throw down with someone recently about expectations, mine are high, this person’s are low, and our expectations seem to spill over into every area of our parallel experiences. My high expectations shape my behavior, the ol’ “I believe I can fly….I believe I can touch the skyyyyyyyhiiiiiiigh” (I am so sorry for those of you who will now be singing this all day). I feel energized by high expectations. I feel like a ninja (which is only natural, since of course I am a ninja in heels every day from 9-12:15). I almost feel…optimistic! Sorry-I should have warned you to sit before I threw THAT idea at you. ; ) The person I was conversing with has very low expectations, and that is reflected in their approach to everything, it’s contagious and sad.

I came out of this conversation really bothered. Expectations have a ridiculous amount of power.

I know the month BEFORE we started chemotherapy, expectations were killing us. My poor 13 year old was a wreck of anxiety and dread. I was about the same. The fear of the unknown made us expect the worst. This was paralyzing to both of us, and by extension made things kind of stinky for everyone who lives in this house. Even Santa was bummed out by December at the Casa Camiolo.

Actually starting chemo was a relief. The expectation was worse than reality, even if we have to now admit that even “easy” chemo like Sorafenib rots.

As we cruise towards scan day in 10 days, I am trying to keep my expectations at bay. Generally my expectation of what April 5 will bring keeps me up past midnight and wakes me at 5 a.m.. Who knew expectations have claws that clutch at your insides when your insides really, really want to be sleeping?

We’ve had about 30 of these days before, closer to 40 if you throw in kid #2s forays into the Siemens Magnetom. Many of them have been ok in context, ye olde “stable, with some areas we need to keep an eye on”. A very few have been actually good: “rock solid stable!”. An extremely memorable handful have been trainwrecks of woe—“tumors have grown”…”malignant transformation”…”chemo failure”…”new tumor”. So my expectation are certainly tempered by experience. And I just can’t expect that these 6 pills a day are actually working. That seems presumptuous, somehow. I mean come ON, we are the Camiolos, Harbingers of Smite.

Call it defensive pessimism, call it glass half empty, call it negativity, call it Kristin (or half a dozen other girl names, with 6 sisters I answer to most names), but that’s kind of how it is.

At the same time, I have to be a ninja for my G. And she doesn’t think she has such a bad case of NF. She actually SAID “I don’t have such a bad case of NF” a few days ago…!!! That blew my mind. In her mind, life is what it is, her feet hurt from chemo, she is so very tired, can she have some pretzels, and did Scotty McCreery or Matthew West come out with a new album yet?

And that expectation, that there ARE folks worse off than she is, and her favorite singers will keep on singing…that gives HER power. How could a child go through what G has gone through over the last almost 8 years and NOT be swallowed by despair?
If I can carry that for her, I am glad to be useful as well as ornamental.

I don’t know what to expect next week. Right now my expectation is kind of whomping me. But I also have a secret plan for what I will do if my expectations prove wrong…

It’s big. And it involves God’s greatest natural resource…

Stay tuned.

(because once again I have a delusional expectation of blogging more often, I have to do something with all the stuff that races through my head when I can’t sleep. Thank you, Captain Insomnia!). ; )