Hey there everybody,

Joe here. Sorry it's been so long since the last post. I finished up my radiation and the third round of chemo about 4 weeks ago. Right after that things got really rough for a while. The last week or so things have been on the upswing a bit, but for a few weeks there, I was feeling horrible. It was like all of the side effects I kept hearing that I should expect hit me like a sledgehammer all at once. I literally was unable to function, and it had a major effect on my state of mind. I was exhausted all the time. I did some research, and there is something called 'cancer related fatigue' (CRF) that is a common side effect for patients. It can be caused by chemo, radiation, or the disease itself. It comes on in a wave and is unrelated to expending energy, and sleep and/or rest are no help. Usually it will last for 3-4 weeks post-radiation, but it can sometimes linger for months or years. It was quite debilitating, and made things extremely stressful.. I started feeling like maybe this was how it was going to be for the foreseeable future, and that had me very depressed and anxious. I just couldn't seem to snap out of it. Along with the CRF, the pain from the tumor was somewhat unbearable, and my bodily functions were a mess. Things were not good for a while, to say the least. The doctors kept telling me just to hang in, and before too long I would "turn a corner", and it would feel like a "switch had been flipped". I think (and really hope) I may have turned that corner. For the last week and a half or so I've been starting to feel a little more normal. The fatigue is not nearly as much of a problem, although it still pops up now and then. My skin is pretty much healed from the damage the radiation caused in the areas where it was focused, and the pain has become easier to manage. I've been able to go to work a few times, which is great, and I am feeling like an actual productive member of society again.

I had a CT Scan last week. I had had an appointment with Dr. Vorenberg, my surgeon, a week before the scan, and he explained how we would proceed from here on out. If the scan showed that the disease had not spread to any other organs or areas of my body, we would stick to the original plan and I would have surgery in a few weeks. If the scan showed any evidence of the cancer having spread anywhere, the original tumor would become secondary, and I would immediately start another round of more powerful chemo. Thankfully, the results were good. The scan showed no evidence of any spread. They did find some pockets of fluid that had built up, but they've concluded that these are most likely the result of my treatments. I see Dr. Vorenberg for a rectal exam tomorrow. He wants to check everything out. Hopefully he'll find that all is well, and we'll proceed as planned.

My surgery is scheduled for October 21. I will most likely have another round of chemo post-surgery. I'll do my best to keep everyone up to date on new developments. Hope everyone is well. Much love.

Week three of radiation

Hey everyone, it's Joe. Haven't posted in a while, and just wanted to give a little update. Radiation is moving right along. The way it works is I go to the hospital every day at 3:30. They call me back to the radiation room, and I take everything out of my pockets and remove my shoes, then I lay on this table-type thing. A towel is put over my midsection, and I pull my pants down a few inches to expose where they shoot the lasers at, but the towel stays. Then the nurses adjust me to make sure my body is lined up correctly based on measurements they took during a planning session before I began the treatment. I've built a friendly rapport with the nurses by this point, so we usually shoot the shit a little while they're doing this. Once I'm lined up, the nurses leave the radiation room and go to another, adjoining room where they watch what is going on and remotely control the table and the big radiation machine that surrounds me. They shoot lasers from the front and both sides. The procedure generally takes about 20-30 minutes. I'm able at this point to block out the sound from the machines, and I've taken to using this as a time for closing my eyes and sorta letting my mind go blank and just breathing. It actually has become quite relaxing. As far as side-effects, the pain is something that I need to keep managing to stay ahead of, and I've had some bouts of nausea and fatigue, and there are times, mostly in the mornings, where I feel like shit. This is all to be expected, but, seriously, for the most part, I feel like my attitude is having a huge effect on keeping me able to function normally. "Mind over matter" is real, in my opinion.

Anyhow, I'm really looking forward to seeing a lot of people in New York next weekend. It will only be a couple of days, but it should be fun! I'll try to keep up on the posting, and will surely let you know if anything changes. In the meantime, hope everyone is well. And stay thirsty, my friends...

Another update

Hi all!

Second week of radiation/chemo combo is well underway. So far, pretty good, I think. One of the common phrases used to describe side effects in the drug literature is "feeling generally unwell" and Joe feels that describes his state pretty darn accurately. He has a fairly persistent sense of "just not feeling good." A little bit nauseous, tired, and overall just yucky. One of the more interesting side effects is his difficulty regulating his body temperature. He gets intense chills: like teeth-chattering, body shaking shivers, and then breaks into a full sweat a few minutes later. It doesn't happen that often (the chill part- the sweat part is more common), but it's wild when it does. He runs an intermittent low-grade fever sometimes, too (docs say this is normal). But as always, he's soldiering through it all, keeping a positive attitude, and generally rocking this entire experience. PLUS, there's some evidence that the radiation is shrinking the main tumor, which bodes well for the eventual outcome as well as Joe's day-to-day comfort. So.... YAY!

In other news, a fundraiser has been planned in Long Island by Joe's awesome sister-in-law, Liz. August 20th, 8:00 PM, PJ Harpers. Should be fun! I'll get Liz's flier up on the blog soon.

Sorry for the infrequent posting. Things are just, you know, groovin' along, so there's often not that much to report. Keep checking in, though! It's great to know people are thinking about us.

Radiation

Started yesterday! Along with oral Chemotherapy Xeloda.

And that’s not all- "Mr. Joe!" is back at work for the first time in quite a while. The plan, as it stands, is for him to work M-F 10AM - 3 PM, then drive across town for 3:30 radiation. I think it sounds a bit grueling for a cancer patient, but as long as his white blood cell count and energy level holds up, he could use the walking around money.

It’s been a pretty wild week. There’s so much ADJUSTING to do. To everything, for everyone. Joe, Miles, me, Miles’ dad… everyone getting used to the idea and the practicalities of our co-habitation. And I must say, it has not been that easy. Not only have I been completely overwhelmed with work, but Joe and I operate at different speeds, so finding our step was a bit of a challenge. I’ve cried my share of frustrated tears, which I suppose is part of the reason for the infrequent posts. But after a few weeks of getting used to things, I think we’re settling into a rhythm that works. And I LIKE living with Joe. He’s much more domestic than I thought! And he’s a wonderful influence for Miles, the lucky munchkin. He doesn’t treat me half-bad, either. ;)

Anyway, after Day 1 of the new chemo/rad regimen, I think Joe was feeling pretty funky. He’s tired, nauseated, and feels like he’s getting a cold. We’re trying to keep Miles’ germs away as best we can and find foods Joe can stomach. He takes the Xeloda with food, so he has to eat at least twice per day… last night he had a hefty portion of spaghetti with my awesome homemade meat sauce, but this morning he had a hard time finishing a bowl of cereal. Pork chops with nectarine sauce and butter beans tonight…. Favorite recipes welcome!

Thanks, as always, for checking in.

Our Weekend

Well, Round 2 is proving to be a tad more difficult than Round 1, but Joe's still holding up great and keeping a defiantly positive attitude. Like last time, he had one full day and night of knocked-out fatigue. This time, there's a little bit of puking added in. :( Hoping that doesn't last long. He's fine most of the time, but twice has felt a sudden, strong wave of nausea and run to the bathroom. His symptoms are remarkably similar to pregnancy- he has an incredibly sensitive nose ("Have you noticed that the house smells like bad breath?"), strong fatigue, cravings, and occasional nausea. Sounds familiar, although it's bound to be worse when you don't love what's causing the symptoms.

On the "feeling awesome" side, after that first day of fatigue, he's felt up to exercising- long bike rides and run/walks in the VA heat! We enjoyed a Flying Squirrels game with Miles (it's no Mets, but it's the best we got), and were particularly impressed with the performance of Cowboy Monkeys. Seriously, y'all New Yorkers- they do this at minor league games. Take that! Last night we went to a summer park concert and picnicked to some surf music while Miles ran circles around a bunch of toddlers. Got a good night's sleep before our busy Monday.

Joe's meeting with the Radiologist this morning, doing a "dry run" of radiation. They'll perform some scans to locate exact tumor locations, then either tattoo (!) or write in permanent ink guiding marks for the radiation. Pics definitely to follow. Radiation begins in one week!

Sorry for the long interval between posts- more soon- stay tuned!

Sh*ts and giggles

One of the parents at Joe's school sent this along. I thoroughly enjoyed the tune- thanks, Kristin!

The Colorectal Surgeon Song

Chemo, Redux

Round 2 is underway! Joe went to the "Infusion Center" (shiver!) for several hours yesterday where he received Oxiliplatin, Magnesium, and a bunch of saline for hydration. Other than being boring, the Infusion Center is comfortable and pleasant. We rocked a crossword, I worked some, and we watched Sopranos reruns on TBS. As always, the nurses adored Joe and gave kind and attentive care. After the center, we went to the Oncologists office, where Joe was given his portable chemo administration device. I think it's amazing- relatively small and unobtrusive, considering. It's like a fanny pack, only instead of Cliff bars and your car keys it's holding Folfox which is being steadily dripped into the port in your neck. Crazy. We had a photo shoot last night; I think Joe's a contender for chemo pack catalogue model:

He wears the pack until tomorrow, and won't have it again, I don't think, until after surgery.

Other than the photo shoot, Joe's sister Kate and her friend Alan are in town, and we spent an enjoyable few hours chatting it up with them, with plans to do the same tonight. They're considering a move nearby, so we'll be seeing more of them, hopefully! After they left Joe and I attempted a Pizza Tonight pizza, but ended up with a yummy gooey mess that I put over lettuce for what I suspect is the world's first Pizza Salad (patent pending). Yum!

Comments

Hey there y'all! It's Joe. A lot of people have told me that they wanted to comment on some of the posts, but couldn't figure out how to do it. At the bottom of each post, there is red writing that says"0 Comments". Just click on that, and you're all set. Have a great weekend!

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.

We got some good news yesterday- my dear friend Frank is an ER physician in Richmond, and knows personally the colorectal surgeon Joe's been referred to. I think that's hugely positive. Joe won't be a number to this guy, and Frank said he's a great surgeon. So: hooray on that front!

CT Scan results tonight. Joe called for them earlier, but the nurse or whoever said Dr. Keate wants to talk to him personally. I don't like the sound of that, but Joe said the person on the phone said Dr. Keate always does this- doesn't mean anything is wrong.

Dr. Keate knows to call after 6. Joe won't be able to get to my house until probably 7. PLEASE Dr Keate call after 7....

I'll put some photos of Joe and I up soon. Sorry- I suck at blogging!

Nice To Meet You

Day 1

Diagnosis: Rectal Cancer. Joe is 36 years old. The weirdest part of the experience so far is the way the Gastroenterologist smiled when he said "we found a tumor!" I think his professional interest got the better of him. Here's what we know so far: 4 cm. tumor, almost certainly malignant. Dr Keate said the tumor had likely been there for at least 3 years, and that based on Joe's symptoms and level of pain it has probably spread.

Day 4

Joe goes for his CT scan. He had to drink 2 liters of barium before going. The experience made a bit more palatable by about a half cup of hershey's syrup. I'm not sure why I'm surprised by his bravery, but I am. He is as courageous a man as I've ever met. Not to mention how attentive and loving and hopeful and warm hearted he is.

My father's girlfriend told me today not to lose myself in this struggle. It struck me then that I'm in no danger of that- I'm FINDING myself in this struggle. So far, at least. My eyes are open, blinders off. My relationship with Joe has been complicated, and I've been hesitant to give myself completely to it. Sensible, as I'm still married (separated for about a year) with a son who's almost 3. Suddenly, though, my hesitancies seem silly. Joe's beauty is obvious. His capacity for love is unsurpassed. I don't want him to die. I'll do whatever I can to keep him alive.

Joe has no health insurance. Cancer without health insurance. My role in this process will be to navigate the system, act as his advocate, do the research, question the doctors, and insist he get the care he needs even though he lacks insurance. So far, the care he has received through Bon Secours has been kind and thorough. Thank God for the doctors who take Access Now. If/when we come out of this, I will donate to that program. I'll donate a lot. For now, though, all money is being conserved for battle.