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.

Scan update

We finally got to meet Evan Anthony on April 20th.  Nobody thought about Dad or his circulating tumor burden.  We're getting pretty used to everything being just fine.  We're going to be struck hard when the piano falls out of the skyscraper.  We're not even looking up- just beebopping along reading another scan report of continued regression.   

We ( well really just me) have researched the next drug we want when Avastin and Interferon cease to hold off angiogenesis.  Since Dad has been such a good responder to VEGF( that's a protein that encourages angiogenesis) inhibiting drugs ( Sutent, Avastin), we ( um, me and some google contributors) assume that we should continue with that class of drugs when need be.  There is a new VEGF inhibitor on the market called Inlyta that is winning clinical trials against Nexavar.  Her trials showed an effectiveness right up there with Sutent but with fewer side effects.

We have a cosmic internet connection with a young(er) man with RCC and his family.  He's got ties to Arkansas and cracks up my coconut with his sharp repartee on his cancer. He has enrolled in a IL-15 trial
at the NIH and is only the 13th human to be injected with the voodoo we hope will spark his immune system into killing his RCC.   Where Dad views RCC as his chronic condition that he has been so very lucky to manage effectively thus far, Chris and his wife, Dena are fighting a different battle.  I'd give them fist bumps for their aggressive pursuit of a cure if our interweb connection ever materialized into  reality.

I think of them every time we get a report of continued stability.  They have children the ages of mine.  They have no choice but to be as aggressive as possible, and they are awesome at it.  Perhaps Chris' ( that's probably an apostrophe error as the conundrum of apostrophes for words with an s on the end still makes me nervy) enrollment in the IL-15 trial opens a new door for RCC treatment, and is the answer for him.  I hope so.

Ya'll tell me if you hear piano music from up above.  We'll be goo-gooing Evan and buying booze and pie for our beach trip until then.

ebo

Herniated guts, and Victor's Secret

Hey everyone! Dad said he'd write yesterday, but I knew he wouldn't, so I'll take the honors in giving an update. He can clarify anything I over-exaggerate or extrapolate.
True Story: Dad's guts are spilling out. They're coming out through a weak spot in his wall, and I do not know if this is from his initial surgical spot or not. Alls I know is he's fortunate to have a strong integumentary system keeping his innards off the floor.
Dad saw Baltzy yesterday, and went in not asking, but telling him that he wants a 4 week wash out before the next scans to prep for laparoscopic hernia repair. You have to get all the meds that are keeping your mets from growing out of your system or you'll never heal from surgery.
You know, I've worked for three years to get Mom and Dad to take an authoritative stance on his healthcare, and I think I would've been a proud parent(in a flipped dysfunctional parent-child relationship moment) seeing Dad tell Baltzy how it was gonna be. Alas, Baltzy told him differently.
This is all second hand, so I'll paint the picture the way I perceived I heard it...
Baltz said, in a nutshell, 'like hell you will.' he told Dad that he had been handed a miracle, and that he would not be messing that up. He would take the miracle, and not go screwing it up for some stupid hernia.
I do appreciate some passion. If you're going to think one way about something, at least do it with some umph. So, I probably don't say it enough, Thank You Dr. Brad Baltz. You have reminded us again to be neither complacent nor unappreciative of our fortune.
There will be no hernia repair. Therefore, Dad the Engineer has set his sights on support attire. Now, there are manly support garments on the market, BUT, since we didn't engineer them ourselves, they're all wrong. The seams are on the inside, the straps are uncomfortable. I reminded Dad that BBW's (that's Big Beautiful Women for you not up on salacious alterno-fetish websites) have been hoisting, securing, and squeezing their big guts in for centuries, and that he and Mom aught pay a visit to the Dillard's Foundations department for some inspiration.
"They have those things at Victoria's Secret?" he said.... "Not in your size, honey"... I had to tell him.
Dad's already started on his Victor's Secret Man Foundation Prototype. Like ManSpanx, but more serious. I think there should be a mustache and monocle on the label.
Dad will meet his 6th grandchild this week when Sisterbaby finally bursts. On July 4th, 2009, my sweet teary eyed baby sister desperately said "Oh my God, he won't meet my babies..."

Oh yes, oh yes he will. Thank you, Dr. Brad Baltz. Thank you.

For the rest of your day, think of Dad in frilly support lingerie. Dad, I'm sorry. Everyone else, YOU'RE WELCOME!!!

;) EAB
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