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!