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.