Do this right now

http://kidneycancerchronicles.com/tell-the-fda-that-we-need-tivo/
Now.
You're obviously just playing on the Internet. Spend 5 minutes. Copy and paste. Do it.
All my love,
E
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Dayenu

It would have been enough. Dayenu. It's a Jewish word that implies that of all the gifts we have been given from God- escape from slavery, a book of guidance, a day of rest- even just one of those would have been sufficient...plenty good enough.
I get it, in concept, but I struggle with ever sitting back and being satisfied in the abundance. I want more. I want better. I know there's more.
Dad has this Dayenu figured out. Whether purposefully or not, he has the enviable trait of simply trusting that his choices have been made; his trust is aligned and loyal, his need to scour the interwebs for information is not there.
That's why he had me. I was told in the late 80s that I was born to unload the dishwasher, alas, my usefulness has evolved!

Dad's scans last week were great, considering the 10 week break from Avastin. We could have seen an aggressive resurgence of mets. We could have seen a new site of metastasis (brain, bone).
We didn't. His scans showed continued stability/non-activity in 4 of 5 of his millimetric masses, with 1 having an iridescent aura of possible growth.
Dayenu.
We saw a tid bit if growth in that one met before the Avastin break, so I don't fully blame the hernia break.
I also don't really trust (here I go again) that we're seeing true growth. I mean come on, first, there's the interjudge reliability between two CT scans, then, come on, we're comparing a CT scan to a PET scan, and third, hellew! these things are in a moving breathing body part. You're telling me that you snapped your picture at the exact same phase of inhale/exhale every time?? Come on.
That was the manifestation of my compensatory strategy of denial. Pardon me.
So, we're looking good on scans. Dayenu. Buuuuuuuuuuuuuuuuut...... What if we could utilize some sort of Star Trek laser beam and tie Dad down and zap that sucker out and just be done with it. Huh? Why not?



This exists, people! Cyber knife, high dose radiation, cryoabalation- all methods to do exactly that. Pinpoint this met, tie him down, tell him to hold his breath, and Zzzzeeeeaaaaaaauuup! It can't be more difficulty than that.

Mom and Dad asked Dr. Baltz about this possibility this week. (Insert Byrd family I'm Proud of You Song). And they have an appointment with an oncology radiologist! Gold stars!!
That guy will tell us if this is even a possibility being that this met is positioned in the azygoesophogeal recess, which is close to vital organs (details...). We don't want to zap those.
Dad, predictably, is unimpressed. Doesn't see the point. Dayenu.
He's got other things to do- clean the pool, run a business...
Even if he goes just for me (wink wink), that's cool with me. I unloaded that dishwasher for so many years! And yeah, you sent me to college, and clothed and fed me, and set me up with life skills superior to nine out of ten people, but come on... what have I ever asked for????
Dayenu.

-Erv

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Because I'm too lazy not to steal the already-written summary from Mom's email....

It's been over a year since Bryan's hernia started causing him some pain and enough bother to tell Dr. Baltz that he wanted to take a break from Avastin so that he could get it repaired. If you read you know that the good doctor said, oh no you're not. So, trusting in the wisdom of experience and medical school, Bryan has just lived with it. He says he's used to it now. No complaints.

Then his blood pressure began to creep up again. Dr. Heifner, the nephrologist, added more and more meds. One he tried was Rogaine which was originally approved as a BP reducer. Now it's used to induce hair growth. That's one side effect he really doesn't need. It didn't work anyway; it just made him retain water. It was decided (by doctors huddling) that Bryan needed another break from Avastin.

On his most recent scans, everything was stable, except the hernia. This time the radiologist mentioned bowel herniation. We weren't really alarmed until Erin gave us a heads-up, using her Google doctorate to tell us that he could be looking at a colostomy if things got worse. So, I made an appointment with a surgeon so that we would have another doc on our team who would be focusing on the hernia, etc. Dr. Tucker was calm and professional (of course) and recognized the balancing of the risks. Stop taking the drugs that are suppressing RCC and risk disease progression. Don't repair the hernia and risk having to have a COLOSTOMY BAG! "This is not a hernia you want to be carrying around." Being careful isn't sufficient. He says some folks have crises in the middle of the night. It just happens.

Next chapter-- Drs. Baltz and Tucker conferred. Tucker must have convinced Baltz that the risk was pretty severe. Plus, Bryan wants it fixed. Tomorrow will be six weeks that he has been off of Avastin, Interferon-A, and those pesky steroids. He's lost the water weight, and my charming husband is back. It's like April after a cloudy winter. Nice.

Wednesday, he'll be at Baptist for the surgery. They'll probably keep him a night or two to watch for bleeding. He'll have to be off the anti-angiogenesis (not growing blood vessels) drugs until he heals, another 4-6 weeks. Then he'll be due for scans again.

For three years and nine months, Bryan has dealt with his diagnosis and treatment with optimism, but he's also said that if his side effects became "too bad" that he would choose a shorter life over one that prevents him from working and being somewhat active. I think this choice to have the surgery fits that view. Take the path that gives the best hope of living more years the way he wants to. We continue to be hopeful for good outcomes. I'll keep you posted on his recovery and whatever-comes-next!

Debbie

And now because no story is complete without a picture



Dad- you don't have the swagger of this dude, and I think you'd have to take another drug break to get a rad tat on your pec.

:) EO

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Status

Me: Oh- we haven't even talked about your cancer. What's up with that?
Him: Guess it's still there...







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- 'Twas merry and bright; with holly and jolly.



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Location:Christmas Dinner Props, 2012

So damn good

I've been hesitant to post. I know it's been awhile. But really, through the last three? sets of scans, cancer things have been so damn good. In this age of Facebook and twitter and constant inflow of errrrbody's business, I get real tired of those people virtually screaming about how great their lives are. "We're so riiiich and we're so beuuuutiful and we're so luuucky and we're so thaaaankful 'cause god's on ouuur side and not yours and since we pray we get to be this riiiich and pri'day and better than youuuuuu and oh yeah look how perfect myyyyyyy children are in their monogrammed matching plaid stuuuuuupid outfits."

Wow! That just flowed out. Maybe I'll earn some unfriends with that. Anyway, I'm just sayin' that things are so damn good, in the cancer world, that I'm almost embarrassed to speak of it. Like speaking of it will bring the backswing of karma back at us. But "we're religious, not superstitious" the Rev. Karen Akin says , or maybe it wasn't her, but I give her credit.

So... The safest image to attach to your eye roll about how amaaaazing and awesuuuum our cancer life is this one:



I think he has a good enough web woven that few could REALLY hold a grudge. Eye roll me, not him.

Scans last week show continued stability and some more resolution of lung mets.


This isn't because we pray to God, this isn't because BEB did something right, this isn't because he's cut down on his red meat consumption ( see above). This is because he's a lucky responder. His body is responding to Avastin and Interferon. That simple.

Oprah says there is no luck- that instead, "luck" is the intersection between opportunity and preparation. I tend to agree with her EXCEPT in this case.
I think your chances with RCC are about the same as hitting black 26 on the roulette wheel- with your chip on the table.

Now, my dark and twisty brain, about a year ago, started thinking about the prospect of building a pool in my backyard with the proceeds from Dad's death.
Sick, huh?? First, I'll probably get $7.00 in quarters as my inheritance, because we are sooo totally noooot sooooo riiiiich, but don't mess up my daydream, k??
Then I decided that it could go two ways- I'd feel awesome about my inheritance purchase every time I dived? dove? in, or I'd feel terrible. Too much to think about.

Instead, I have a new plan. July 4, 2014. That's five years. We're closer to that day than we are to Diagnosis Day. Statistics lend that it would not be hasty to PREPARE my backyard for the OPPORTUNITY to throw dad a five-year pool party. On my own dime.

Wouldn't we feel LUCKY. Every single body's invited if we get so lucky.

Thanksgiving tradition yields that we gather round a piano and withstand an awkward group singing of 'We Gather Together.' Sisterbaby and I usually cut the unbearable tension by performing a modern interpretive dance while our rule-abiding brother stands nicely with his sheet music to complete what is right and just in the Eyes of Mom. Embarrassingly, I found myself humming said tune last night while I was prepping cornbread for dressing.

So as "we gather together to ask the lord's blessing", I'll ask for it, but I won't expect it, and I'll know I'm lucky if I get it.

Gobble gobble,
E

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Three years, say wha??

We ( I blame Dad) didn't do a three year post.  July 3rd was diagnosis day, August somethin' was surgery day.  August somethin' else was Sutent day.  We were at the beach again in the midst of all those dates.  Dad and I were talking about what we should blog about, blah blah, nobody reads this anymore, you're un-interesting, I'm boring, nobody cares about your measly little mets, we gave this thing too much hype in the beginning, and now there's no drama to report on, and its all his fault we'll NEVER get picked up for a reality show.

Then Dad started coughing and sniffing his nose.  Then he lost his voice.  Then he fell asleep in a beach chair ( ok, not so abnormal).  Then he started having trouble catching his breath.  Then he went to bed and slept all day. Uh, Dad...you look like heyull.  Mom told me to go check on him.  I didn't want to be the one that found him Belushi style in the beach house.  Thought it would be hard to erase from my memory.  I think Sam went.  He said there was still movement, so he was not yet dead.

Siri and I made a diagnosis of bacterial pneumonia.  Baltz called in some Avelox.  Ironically, my BFF from forever and ever is a rep for Avelox.  She was at the beach too.  Her trunk in Wisconsin is full of Avelox.  She flew.   We got the drug anyway and all agreed that if he didn't improve by tomorrow, we'd have to take him to the hospital.  Again, he looked like heyull.  

 I am not a paid representative of Avelox, but I should be.  That shit WORKS.  Brought Dad back from the barely walking dead.  That was the most exciting thing that happened in the midst of the 3 year anniversary UNTIL my annual synchronized swimming performance with Sisterbaby.  We chose Neil Diamond this year.  It was incredible.  

Fast forward to this week...  Three month scans reveal "only minimal residual densities persist at the site of prior nodules....It is unclear if these simply represent scar or there is residual disease within these areas at this point."  

What?  Really?  That's so good.  So so so very good.  So very good.  I was at work when Dad called to tell me results.  I had some therapists in my office complaining about schedules, being impatient, looking to me to fix all the problems they're paid very well to fix.  I forgot is was scan time and almost didn't answer Dad's call because I was so busy.  Then I decided that there will be a day when I'll wish I could call him and won't be able to, so  I picked it up.  "Helleww?"

He didn't get straight to the point, saying things like "Well, Dr. Baltz just called."  and "He said that he thought I would want to hear" .  He was so cryptic that I started to regret my decision to answer the phone with so many people in my office looking at me.   That nervy feeling of vomit and dread was filling my guts.  Then he spilled the good news and it was great and we talked some details after that and then we hung up. I still had said two therapists staring at me; still waiting on me to fix their relatively insignificant problems and BOOM, I burst into tears.   It was SO effective.  I didn't mean to.  I really didn't.  And I really didn't know that train was coming.    They got wide eyed.  I am their boss.  I like to remain enigmatic.  And right there, I was losing it.    I don't think I sprayed snot on anyone, but I got to explain to them that yes, I was just fine, and yes, that phone call was good, very good news, and that suddenly their little scheduling problem didn't matter to me at all and if they could kindly turn and walk out of my office I'd appreciate.  

So very effective, a healthy perspective.

So very good.  If you had asked us three years ago, we would have wanted the mets completely gone. Now, we have new perspective.  It is good that they're still there, whether they are residual disease or residual scar;  the terrorists are tied up in our living room instead of lurking unseen in the back yard.  We can keep our eyes on them.  

Stay still mets....we're watchin' you.