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.
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.
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.
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!!!
I've changed the blog to "dynamic view," which probably sends some of you old- timers into the shivers. Calm down. Change is good. When you pull it up on your iPad, it will say the new dynamic view is unsupported. Their pants are on fire... it works just fine. Just click on 'continue unsupported' and feel smug in beating the system. Now I'll have to come up with something to write about the offensive malignant cell balls that started this whole blog in the first place. Give me time. Ol' malignant cell balls have been behaving lately... nothing to report. I'm sorely disappointed that I can't get the picture of the molecular structure of Avastin on this dynamic view.
Results of Monday's scan are in. Ol' girl Avastin is doing her job. The last sentence on the report is the coolest- "minimal disease present at this time."
OurFavoriteDrug has been in the news lately because she has been determined ineffective for the treatment of breast cancer, or, I suppose her stats in breast cancer don't justify her costs...and I don't know which political party it places me in when I think about the one woman for whom Avastin is working and the struggle she must face.
What if the FDA felt the same about Avastin in RCC? I simply don't care if it's working for everyone else, or if it costs the insurance company more than one life is worth, or if Genentech/Roche has to up their cost to pay their research nerd. It's working for us. So don't mess with it. Leave Avastin alone. There, politico over.
Dad will resume The Juice on February 14th. He's gonna have a little chemo-pole withdrawal, but I'm sure he'll find other things to do.
Goooooooooo Avastin! Be aggressive. Be. Be. Aggressive.
Dad's been experiencing some swelling of his extremities as of late, and we've been trying to figure out the cause. Kids don't lie, and last weekend Elliot asked him, "Paw Paw, why's your face like that? so... so... fat?" Ha! His legs are holding water like crazy, and I had a dream that he dropped dead of a heart attack and the sweet sweet irony we'd all discuss at the funeral.... So I called and kinda begged for him to make another appointment with the heart doc ( swelling can be indicative of congestive heart failure, duh...).
Not one one worry, or rush to seek medical attention, or be concerned that he's only wearing house shoes, The Patient finally called his nephrologist ( not the heart doctor, but a doctor all the same) and got an appointment. Dr Hefner was equally concerned with his swelling and asked him to collect his pee in a jug for a day. I guess that's a nephrologist's tool bag- a big jug of pee. I haven't given up my quest for a cardiology appointment, and even pulled in Sisterbaby to make a call as well. The baby in the family usually gets what she wants.
Anyway, it has been determined that Dad is spilling protein, probably because the un-rotten kidney isn't working up to par, and protein acts as a glue to keep your fluids where they need to be. He prescribed a different diuretic and recommended a break from Avastin ( gasp!).
Dad got some quick relief from the diuretic, went to see Baltzy the Oncologist on Tuesday, wasn't supposed to get the Avastin, but did anyway. He doesn't want to go without his Avastin, but Baltzy said that he's got to let his kinda-ok kidney catch up. Dad is glad he snuck in an extra dose, as he doesn't want any false negatives on his scans on Monday. He'll stay off Avastin until Feb 14th, then they'll re-evaluate.
Baltzy and Hefner have both been saying that his heart is fine, and that he didn't need to go to the cardiologist; however, in a sudden strike of divine intelligence, Baltzy came to his senses and told Dad that when two women get together and tell you to do something, just go ahead and do it.
It's been 9 months since I blogged. Some of you may have been worried about me.... or not .
This is a picture of Erin, and Ezra (born November 15) He's the 5th grandchild. How could I not be fine ! Looks just like me, don't you think?
Erin wrote one time about the spooky white eyebrows. Well, the darker model is back. How could I not be fine ! Not long ago, Dr. Baltz said I looked 10 years younger. He didn't say that I looked 10 years younger than 60, just that I looked 10 years younger than I did a while back.
The Avastin/Interferon cocktail is apparently still working. I guess you saw where some mets were actually gone, gone, gone in the late October scans. We have another set of scans to do at the end of January. More news then. I've been on this regimen for 9 months now and still don't have it figured out and quantified like I did the Sutent. On the week that I just have the Interferon injection, I've come to expect ache joints, and headaches for 3+ days. Debbie says I'm grumpy....nah! On the other week, I get an IV of Avastin + the Interferon injection...and they add a steroid to the IV that totally masks the flu-like symtoms.
Body chemistry is a strange thing. All of a sudden, my blood sodium was low. That's a bad thing and it can kill you or make you crazy as a lesser symtom. I'm monitored so thoroughly that I didn't experience either so I've spent a few months building that back up.
Side effect of Chemo is water retention. Water retention means dilution of your sodium, so don't eat dietary salt, but drink yourself silly on GatorAid. Don't drink any water at all...brush your teeth with GatorAid. I'm sick of GatorAid!
I've been freezing to death since summer....finally we're working on hypothyroidism symtoms. I wish they had started earlier, because it's about to be well digger cold, and my thyroid isn't regulated yet.
I'll be 61 in less than a week. I'm fine...really I am.