Update

Hi all!

Joe met with the Oncologist NP today, with great results. He's slightly anemic (low red blood cells, but not uncommon even among non-cancerous people), but his white blood cells (immunity and bone integrity) and platelets (I have no idea) are great. So far, so (really) good. The side effects of this chemo cocktail are said to be cumulative, so we're waiting and seeing. The next round of chemo starts Wednesday, and (YAY!) can be done at home with a portable pump in his implanted catheter. Hooray for the Power Pump!

As always, Joe is in strong spirits. He really liked the Nurse Practitioner (more than the Oncologist, which makes sense, 'cause that guy is WEIRD), and feels confident about the treatment plan. We will, of course, keep everyone posted. Thanks as always for following the saga...much love from both of us!

La Di Da

Hi everyone! Long time no type. Not much has been happening, really… Joe is a super trooper with the chemo so far.

That cookout I mentioned last Saturday didn't happen. Joe hit a pretty hard wall around 3 PM on Saturday, and then slept 12 hours that night. I thought it was the beginning of a week's worth of exhaustion, but no. On Sunday, he was his old self again. He seems to feel almost better now than he did before, which is pretty amazing. Most of our activity of late has been getting him moved in and settling into our new domestic routine. Which isn’t a bad routine, it turns out! Living together is good.

As Joe wrote a few days ago, there has been a slight change to the treatment plan- we thought radiology/chemotherapy combo would start next week, but instead, they’re doing another round of the 24 hour chemo drip. We don’t know if this is because he tolerated the initial dose so well or what, but it feels like more treatment, not less, so I’m cool with it. Joe has a follow-up with the Oncologist today, when a lot of questions will be answered. A very important one being whether Joe can take this next dose of chemo from home (using his newly implanted PowerPort) or if he has to be in the hospital again. SO hoping for the former!

I’ll send another update once we know more from Dr. Schwarz, so stay tuned...

I'll play your game, Trivette

Hey everybody! This is Joe. Thank you all so much for following along with this. I can't begin to tell you how much all of your concern and support is appreciated! And extra-special thanks to Erin for keeping you all updated.

We met with the new radiology oncologist, Dr. Trivette for the first time today. Seems like a pretty good guy. He got things coordinated with Dr. Schwarz(the medical oncologist), and Dr. Vorenberg (the surgeon). I'll do another round of the FOLFOX starting next week (not sure if it will mean another hospital stay, or if it can be done outpatient-style;stay tuned!), and then start the chemo/radiation in conjunction the week of July 18. That will last for five 1/2 weeks or so. Daily radiation for about 15-20 min., along with more chemo. The plan is that this will all kill as much of this thing as possible. Then, about 6 weeks of time for my body to replenish and get sturdy for the surgery. This is my understanding of the plan as of now.

We'll continue to keep you posted. Much Love!

Phase I Complete

Joe merrily exits the hospital:

So far, so good! He's tired, but not feeling nauseated. Pain management is going fairly well, as he's on a kickin' dose of Percocet. We had a busy and productive day yesterday, culminating in taking Miles to see a little Sharon Jones at Friday Cheers. We walked to the farmer's market this morning, got some awesome veggies and pastured meats, and are getting ready for a cookout at a friend's house.

First meeting with the Radiology Oncologist (#2- the first didn't accept Access Now) is Monday. Joe might be getting tattooed! I'll definitely post a pic of that. :)

Have a lovely weekend, everyone!

Nothing Cold!!

So, I just learned the meaning of this sign, which has been posted on Joe's hospital door since chemo began:

I thought "nothing cold" WAS the chemo precaution, but no. "Chemo precaution," I just learned, means that Joe's body fluids [sweat, tears, urine, saliva, ETC. (caps intended)] are toxic. So much for the kissing we've done! :) And the kissing we were planning to do. His body should flush the platinum within 48-56 hours or so, but it can't feel great to know your body is excreting Cancer-causing agents. Especially when you have Cancer. Poor Joe. The "Nothing Cold!" order is because cold beverages or food makes the hands and feet of people on this chemo go numb. I would revise the sign to read:

Chemo Precautions!!!!!

(Also, nothing cold.)

But that's just me.

Joe Rocks Chemo

A little Pandora, a little crossword puzzle, and the firmly stated decision to have no side effects from chemo. :) Hello from the hospital!

And we're off!!

Chemo has begun! Thank Whomever. While it's weird that Joe is being intravenously administered PLATINUM, it's nice to think about that evil cancer being thwarted instead of fed. I was able to be at the hospital for a good part of today, but tonight I'm at home with Miles, so couldn't be there when they hooked up the remedy/poison to his catheter. We were on the phone, though, and he's holding up great. Whatever side effects he has will show in a few days. If it weren't so personal, it would be much more interesting to learn that chemo stops rapid cell division (Cancer's so efficient!), and the side effects are all related to the cells in our bodies that rapidly divide. Such as the lining of our mouths, hair follicles, skin on our hands and feet, and digestive tract. It makes sense. I love it when things make sense. Those are the places where we interact with the items of our human experience, and I love that they renew themselves often. Sounds sort of cleansing, in a way.

For the wonks out there: They gave him a steroid (I think), and an anti-nausea drug before they started the chemo. Currently, Joe's got two IVs going- the Oxaliplatin ("Platinum" link above), and the "Rescue Drug" which will hopefully protect some of those rapidly dividing cells he needs. One in the neck, one in the arm. After a few hours of the Oxaliplatin drip, he'll start a series of other medications, which, combined with Oxaliplatin, makes FOLFOX, the chemo cocktail we already researched. He'll be confined to his hospital floor until discharge, so no more walks to the cafeteria for mediocre pizza. ;)

The hospital, Memorial Regional Medical Center, part of the Bon Secours network, has been outstanding. Attentive, cheerful, and empathetic.

They've agreed to give him an Ambien tonight, so he might be conked. But in general,

Joe's mostly bored, so if you want to call him, DO! His cell works, and he's addicted to Facebook, so chat's a possibility. If you need his contact info (or want to talk to me for any reason), you can email me at erinbishop@gmail.com or call me at 804.305.0255.

All in all, I think we're pretty good- glad remedy is underway, taking everything (the move, the diagnosis, the life changes) in stride. As always, much love and appreciation for your support and good wishes!

Nothing Yet...

Hi all,

Joe's been in his hospital room since noon yesterday, and JUST NOW got his implant port (Power Port!) for the chemo. It's a semi-permanent direct line to his bloodstream. This will prevent the nurses from having to find a vein every time they give him a treatment, so it's a good thing. Joe's not thrilled with the night in the hospital for no reason, but seems to be recovering from the port implant well. He's wolfing down a hospital breakfast that's been sitting out for 5 hours, so he must be REALLY hungry!

I think chemo will start today, but will keep you posted. Love to all.

Change of Plan

So, Joe talked to the Oncologist's office today, and was told that his Monday chemo start will be in-patient: he'll be in the hospital for 2 1/2 days. The following Monday radiation will begin, and instead of being in conjunction with Xeloda, the chemo pill, he'll be getting the typical drip, for which he must stay in the clinic for several hours strapped to an IV. Not sure what the drug is called yet. Daily radiation, and bi-weekly chemo drip, for at least 5 weeks. Then a blissful 6 weeks or so of recovery before surgery, followed by more chemo drip. This is going to be a long, hard road. My Outward Bound instructor would say "slow and steady" and I think that's how I'll think of it- with the memory of my worn hiking boot landing a mere 6 inches past my other one, over and over again. A miserable slog resulting in a phenomenal reward.

Headed to Joe's to pack up the kitchen. Tomorrow is moving day. Sunday is funday!

Gettin' this party started!

First, sorry for the absence. I was temporarily shut out of my gmail account, and couldn't post. Second, we've met with a Radiology Oncologist and a Medical Oncologist, and are very, very pleased to report that Joe starts intense Chemo on Monday. Monday! We left the meeting with the MO thinking it would start end of June/early July, which did not feel good. Not only does he start on Monday, but they're giving him a more intensive regimen than was originally planned. I suspect this was due some pressure from our friend/Colorectal Surgeon Andy Vorenberg. Bless that man! Seriously: next time you need a Colorectal Surgeon, he's the one to call. ;)

So, for the next few days, we're in high gear- moving Joe's stuff into the house (he broke his lease with his very understanding landlord), getting this work schedule straight, and... I guess that's it. Just getting ready.

His initial chemo drug will be FOLFOX for a week, followed by 5 weeks of radiation in concurrence with Xeloda , and while the administration of Folfox sucks (a few days in the hospital tethered to an IV), the side effects of Xeloda are way less than the chemo given to breast, ovarian, and pancreatic cancer patients. Those cause the horrible nausea, hair loss, and weight loss that I think we most associate with Cancer. Xeloda side effects include diarrhea (Joe's got that handled!) and fatigue.

Monetarily, everything has been remarkably and surprisingly covered so far, but we learned today that Folfox, which he'll get for 5 weeks, costs about $3,000 per MONTH. Ouch.

As always, thank you for your love, support, and feedback. Be well!

Stage 3

Which is not Stage 4! There was some indication we might be dealing with a Stage 4 cancer, so we're relieved. It's a very aggressive cancer locally (rectum, colon, lymph nodes), but does not appear to have spread to the abdominal wall or any vital organs. The surgeon, Andy Vorenberg, seems great. Direct, honest, open. He looks you squarely in the eyes when he speaks, and doesn't shy away from uncertainty. Though he's not uncertain about much. A quick google search of his name reveals that he also hosted a Royal Wedding party. So....

Anyway, the plan: 1) Chemotherapy: news to me, but there are different chemos for different cancers, and the colon cancer chemo ain't so bad (" 'Nuff said" song?). No hair loss, less nausea than most. Joe will probably be able to keep working more than we had expected. 2) Radiation: kill everything in and around Joe's rectum and colon. This will probably cause some permanent digestive issues. 3) Surgery: remove all that (hopefully) dead tumor, remove tissue around the dead tumor (I believe he called it "margin"), and (more hopefulness) put Humpty Dumpty together again.

It's good to have a plan. And it's good to know we're not Stage 4. Stage 4 Colon Cancer survival rate is about 8%, but more people survive Stage 3 than die from it. And most of them are young! I'm so relieved to be spending the next several months nursing Joe than, like, skydiving with him, you know? So, onward and upward.

Tomorrow we meet with the Radiation Oncologist, and next week with the general Oncologist. I'll figure out why they need to be separate people later. My guess is chemo will start late next week/early the following.

We'll keep you posted. Much love!

Big Test Today!

Joe's ultrasound is at 3 today. I'm moderating a group until about 3:30, hoping I get there in time to talk to the doctor afterward. This one should give us some sense of which stage of cancer we're facing. Super nervous. Think good thoughts!

Also, we established a separate bank account for Joe's medical expenses, and I've linked it to a Paypal account. The button to donate to the fund is to the right- I know many have only their awesome friendship to offer (which is enough!), but if you find that you have a bit of extra cash, I hope you'll consider donating. We promise to be very, very careful with the account. And, if there's anything left over once we're done with treatment, we'll return money to you or pass it along to the American Cancer Society. Thanks for your continued love and support!

The Sit Down

Hi! Back from an awesome trip to visit my sister's family and meet little Frances. Frances is sweet, beautiful, focused, and has the most heart-melting pout. Miles did great on the plane and loves giving his cousin "gentle touches." The weather was blessedly cool (Richmond feels like walking through hot chicken broth). Babies, by the way, are the opposite of cancer!

So, the Big Sit Down with the surgeon was yesterday, and all went well. Big love and hugs to Joe's three Ass-ociates who came from C-ville! Joe says the surgeon is our age, honest, direct, confident, and relaxed. He agrees that chemo prior to surgery is the way to go, and the exact course of treatment will be determined after Monday, when Joe gets a PET Scan and an internal ultrasound. We'll know the cancer stage after those test results come back, too. The PET Scan doesn't sound like much fun at all, AND it means Joe can't have a single beer at the Phish show the night before, but maybe that's a good exercise in restraint. ;) For the ultrasound, though, he gets Fentanyl, or, as the surgeon put it, "what Michael Jackson killed himself with." Debatable. Either way, I'm looking forward to hearing Joe's lovely brain on Fentanyl. When I walked in after the colonoscopy, my loopy man informed me that "It was supposed to be Elvis's birthday party." Indeed!

L-I-V-I-N

Hey Everybody! This is Joe. Erin's in San Fran visiting her sister and meeting her new neice for the first time. Wanted to give y'all a little update. First off-I'm good. L-I-V-I-N'! Had a great time with some great people over the weekend. Warm bonfire, cool vibes, fun music, and bobcats!

So, on the medical side of things, i will be getting a referral to an oncologist tomorrow. Both Dr. Keate's office and the FanFreeClinic; where I first went, and who referred me to Dr Keate; are on the case.

Got my first appointment, or "Sit Down", as I'm picturing it, with my Colorectal Surgeon on Thursday. Should know more about the path of treatment and recovery after that. Think I may want to bring some people with me for that. You know, some ass-ociates. ;)

Anyway, gonna go make some shitake lasagne. some mushrooms are actually really good for fighting a pain in the ass like i've got.

Love you all! "Be excellent to each other...and..." if you can figure out how to post to this blog-this is an easy one. 2 cookies if you finish the line in a way i find most appropriate!!! there are clues!!!

Music Therapy

An early morning getting ready for my trip to SF to meet my new niece! Not much sleep last night, but feeling good.

A very productive and therapeutic weekend. We cleaned Joe's apartment on Friday night, and stayed there for the first time since the diagnosis. After our chores were done, we sat on the front porch and clapped and sang while he played guitar. It was fun and intimate and cathartic for us both. I'm surprised at the number of songs that have been about mortality all along without my realizing it. Mortality and love, which are two very present concepts to the both of us.

Saturday saw the worst brunch ever (if you're ever in Richmond, do NOT go to F.W. Sullivan's, even though they have a Bloody Bar). After some SF trip preparation, we headed to Charlottesville, where our friend hosted a bonfire guitar jam at his place near Ash Lawn. Another night of music therapy, this time with good friends, star gazing, kudzu discussing, and yarn spinning. Joe sang and played with beautiful abandon.

Yesterday we visited Ellwood Thompson, our best local natural market, and bought a bunch of recommended tinctures and extracts and so on. Garlic extract and Quercetin and Cat's Claw and Ginseng and Tumeric. We'll have to buy shark cartilage online. We also got a bunch of protein powder for the all-important quest of building some muscle mass before chemo. Joe is so thin. I'm shamed by my self-centered and unobservant idea that his weight loss was due to lifestyle changes I inspired. I turned him on to running and salads, but he wasn't running that much, or eating that much salad. 40 pounds!

Stay tuned for more updates on the Oncologist quest, insurance considerations, and more. What fun! ;)

"Bad Day. F*ck It."

What movie? A cookie to the first one who gets it!

Seriously, though, a bad day. When I woke up this morning Joe had been awake for hours and was angry and afraid. I guess is was a rough night and when we talked during his break it sounded like the misery continued into his day. :(

All perfectly normal, of course. It's just tough to watch him feel that way. He's still determined, just scared. And angry. As am I.

On the practical side, I'm STILL trying to figure out whether Medicaid, Pre-existing Condition Insurance Plan (PCIP) or sticking with Access Now is the right approach. Anyone have any sense of what medications associated with chemo treatment are or cost? Access Now covers no meds. I think chemotherapy will be considered a treatment, not a drug, but I'm sure there are others he'll be on.

I got the GI doc to email me the CT scan report, and our awesome physician friends looked at it. One suggested Joe get an oncologist before the surgery- that chemo before the surgery may be a better route. I'm trying to coordinate that with Access Now. Another is hoping to talk with Joe's surgeon today to get a better sense of how to read the CT report.

Tonight we have some cleaning and chores to do, but tomorrow we'll have some fun!

CT Scan Results

Mixed news to report. First, the good news: there is no detectable cancer in Joe’s lungs, liver, or bone. Hooray!

The cancer in his abdomen, though, is “widespread and aggressive,” and does appear to be in the lymph nodes. His course of treatment will be The Trifecta: Surgery, Chemotherapy, and Radiation. We’re gearing up for a long, difficult, and victorious fight. First meeting with the surgeon is the 9th. I’ll be on my way back from San Francisco, so Joe goes alone. Which sucks.

Joe is super optimistic- even comforting ME from time to time. His beautiful bravery continues. And we’ve both seen a wonderful outpouring of support from friends and family. People from everywhere want to help us and see us. It has inspired an interesting, ongoing conversation between Joe and I. To him, changing his life in any way (seeing friends he hasn’t seen in a long time, taking a trip he wasn’t planning to take before cancer) feels like succumbing- like an admission of defeat. There’s both strength and fear in that instinct, I think. To me, we’re ALL learning a little something about how to live our lives, and we should start living our lives that way at once. That’s what I’m trying to do, and I don’t feel defeated. I feel enlightened. Too bad Joe doesn’t have the password to this blog so he can further explain his side of the debate.. MWWAAHAHAHA.

(Just kidding- he does.)

No news is good news?

Dr. Keate didn't call last night. We sat around biting our fingernails for about 4 hours before giving in to the idea that he wasn't going to call at all. We've been promised a call after 6:30 tonight.

If it means anything that the doctor didn't call (which it might not), it would be a positive sign, we decided.

In the meantime, I'm learning alot from the American Cancer Society page about Colorectal Cancer

The other thing we need to focus on is keeping his job. If anyone knows anything about employment discrimination law, please get in touch. So far, I've learned that he needs to put in writing his diagnosis and request "reasonable accommodations" for his treatment and recovery. The accommodation he needs the most is time off. It will mean less money, but whatever. I don't think he can be fired for taking unpaid leave. That was good to know... The other question I have is whether he can still get the insurance that his job offers. They told him about the policy when he first qualified; we didn't think he could afford it with his preschool teacher salary. That seems like such a shortsighted mistake in retrospect.

Shortsighted is the word of the illness, I suppose. All of our planning is in weeks or months. Today we get CT results, next week he talks to the surgeon.