Tuesday, February 25, 2014


" Back off it, diaphragm, that shit is mine"
                                - Dad's liver

Last Thursday, we welcomed the largest spleen they ever had seen at Baptist in Little Rock.  The surgeon likened it to birthing a baby.  Which is gross.  Pathology measured it at 21 x 15 x 5.5 cm and described it as soft, dark red, and meaty.  It was in a finely wrinkled capsule, but had torn edges near the hilar surface.    That thing has been through hell.   It weighed in at 1.7 lbs which is kind of disappointing, until you think about what a 26.9 ounce steak would look like on a plate.   I'll give you a moment. 

Dad had scans last week as well, and after three months of no drugs, his scans are still good.  There was no growth ( except for that meaty spleen).  Docs thought that taking a drug break would help return his blood levels back to normal.  His platelets are really low, his blood volume is low, his red blood cells are puney.   His blood didn't see any real improvement from coming off the drugs, and his spleen kept growing, so somebody, somewhere ( I can't keep up with all the docs anymore) said that his spleen was hoarding his platelets ( obviously), and that removing it would be a way to maybe get his blood levels back in line.  That, and it was a ticking time bomb about to spew grossness throughout his vessel. 

The surgeon used this surgery as an entrance point to also repair some incisional hernias that were really jeopardizing Dad's modeling career.  I assume it is this orifice from which he bore the soft, dark red, meaty spleen.  His platelet count was up 100 points within 24 hours. 

The Patient was home by Sunday, with oral pain meds.  Now, apparently, his other organs are fighting for the empty space, and that is painful.  He's getting scanned today to rule out gall stones/ a gall bladder attack.  I'm unfamiliar with the bladder of gall and what it contributes to the machine, and what they'll do if its not acting right. 

With the current frequency of my posts, my next one might be at the 5 year mark.  July.   He's not on any meds.  He's only missing two major organs, one being considered just an accessory.  I built a pool just for the 5 year party ( that's a lie- not the pool part, the "just for the party" part).  

The reports are referring to the mets in past tense.  That's cool and all, but it doesn't mean he's cured.  It just means that there's a tiny chance of something else killing him before RCC does.  He should continue to wear his seat belt and watch out for busses.  He's doing that well. 

Thursday, August 8, 2013

Gene, Billy, Chris

This lesson begins with a Rooster. One of six brought to our backyard by my husband back in April to cut our costs on organic eggs, and to teach our children the prequels of McNuggets. When they're chicks, you can't tell how they'll turn out, so we named named them androgynously. Gene turned out to be a fluffy white chicken, with a regal red gobble gobble and crazy feathered feet. He prided himself as ruler of the roost. A natural leader, he kept the hens in check and coyotes at bay. He let his power go to his head and started bossing the human chicks. Mild pecking at first, then a targeted sight on the weakest of the boys. We waged a war with foam weaponry and rubber boots to show Gene who was boss, yet he remained intent to usurp. There is no home for wayward roosters, so, aligning with our initial intent, Gene had to go.
We research how to proceed. I bow out, realizing that I have no business consuming any more nuggets if I can't face the reality of what that means. Shaun trudges forward. He too now sees that if he can't do what he's planning to do to Gene, he deserves "to have a bucket of blood thrown on him by some PETA freak." Days pass, Shaun is thoughtful. I remind him that he doesn't have to do it. He believes that he does. As Tuesday evening approaches, he is nervous, not wanting Gene's last moments to be chaotic because of The Farmer's inexperience. He prays; audibly, fearfully, for him not to suffer as he gently removes him from the coop to the block.
I decided not to be present and went inside.
A shaken Shaun appears a bit later, begging me to never let him suffer. That if something should happen, be sure, but to never ever leave him alone with his thoughts and pain. I had to promise. Standing in our kitchen. Frantically, I did promise, to ease my love's shaky soul. He worried that he let Gene suffer through the night.
Tuesday's spark: Even chickens deserve mercy.

Billy came to the clinic about 4 years ago. Birth complications landed him with profound Cerebral Palsy. He knew no different at 5 years old, but Billy couldn't move. His brain and muscles irreparably not speaking to one another. He had a trach to facilitate his breathing. Quite frankly, he was the picture of therapist's worst nightmare. All we could do for Billy was keep his joints stretched out to prevent him from turning to stone. We helped his mother better handle his trach by her constant suctioning of the goo his body couldn't handle. A sound I had to gracefully run like hell to avoid during two pregnancies to keep the cookies in my stomach and the lights on in the attic.
There was no progress, in a business that prides itself on making things all better, all stronger, all ready to
head out and face the world. Billy got passed around to all the different therapists as each one individually burned out on the lack of hope Billy's case brought.

As I sat through Billy's funeral on Wednesday afternoon, surprised that I wasn't weeping at the slideshow backed with Clapton's Tears in Heaven, I listened to the preacher-man talk but couldn't quiet my head-voice.
"We learned unconditional love from Billy"
What? I learned despair.
"We learned what true love looks like through Billy's fragile body."
Hardly. I saw suffering.
"We learned kindness through his short life."
Enough. I appreciate the mercy of his death.
Wednesday: Billy deserved mercy. And he had to wait too long for his prize.

I "met" Chris and Dena Battle through the network of Internet support forum for RCC. I stumbled across an article he had written for the Arkansas Times? about his struggle with getting an accurate diagnosis, his search for the right team to treat his cancer, and was green with envy with how much better he was than I at being funny about cancer. Chris and Dena penned their way through 4 years of constant struggle to find a drug that slowed his cancer. He let himself be the lab rat for every thinkable trial, experiment, drug cocktail so he could stick around for his little girls. He did not enjoy the complacency we have with a drug that has worked. Every option he tried failed him. And brilliantly, he and Dena penned every step of the way for the world to see. Check out www.kidneycancerchronicles.com if you want a remarkable read. They lobbied to the FDA. They ANSWERED EMAILS joyfully when I asked them their opinions on Dad's care. This struck me as impressive as they are my contemporaries. They have two young children and jobs and stage 4 renal cancer and they always found time to help.
I could not fall asleep last night. I was thinking about Gene, and Billy, and Chris and Dena's girls, and couldn't stop my gut from wrenching about what Dena would soon be facing. She could just as well be me, facing the imminent death of her love, and her upcoming life of bittersweet moments she will see alone. I looked at the clock at 3:12, and was startled when Shaun nudged me at 7:30. I fixed my coffee, weary from my sleepless night, checked my phone to see how many things I'd missed, and was met with Dena's Facebook post that Chris had died, with her and his parents present, at 8:00 this morning.
I cried for Chris, for his anguish to stay against a disease that wouldn't quit. I cried for Dena, who will lead her babies through this nightmare on the fumes she's got left. I cried for Kate for having to brave a reality I haven't had to bear at four times her age. I cried for Josie because she's old enough to know, but not old enough to understand. I cried because all Dena deserves right now is some mercy.
Thursday: we all deserve it; but none more than Dena today.

This week has taught me to find more moments to offer mercy.
Dishwasher still not unloaded? Find benevolence. Stepped on another damn Lego? Offer clemency. Catty office drama? Bring tolerance. Ready to send the nasty email to get your point across? Try grace.
I'll lend my share of mercy to Dena tonight, and hope I never need it back.

Cancer sucks,

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Thursday, May 23, 2013

Do this right now

You're obviously just playing on the Internet. Spend 5 minutes. Copy and paste. Do it.
All my love,
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Thursday, May 2, 2013


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.
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????


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Monday, April 1, 2013

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!


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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Thursday, December 27, 2012


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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Wednesday, December 26, 2012

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

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Location:Christmas Dinner Props, 2012