Charlene was recruited for the race by a group that was raising money for the Gavin R Stevens Foundation. They needed a real deal blind person to run the race with them (to add, I guess, some verisimilitude to the undertaking) and not surprisingly it proved tougher than they expected to find a blind person willing to undertake a mud run. Charlene is a balls to the wall athlete who has been blind from birth. She has run marathons, done sprint triathlons, completed a 50 mile race, (tandem) biked in Europe – there’s not much she’s afraid of (except flying insects getting in her face). The race officials were going to let her go around all of the mud pits to which Chuck responded, “No way!” and made her go through at least a few of them. He went through a bunch as well, and ended up sliding into one pit that turned out to be deeper than he expected. At the finish he was so mud-covered that we couldn’t really see what he had done to himself, but later in the day it was clear that he had done a bit of a number on himself.

Day One, after washing

Day Two, looking icky

At the doctor's

Three days on antibiotics

As the images show, things got ugly. It didn’t help that the next day we decided to do an ocean swim and he pulled on (then pulled off) a wetsuit over the leg. Each day the leg became a bit more tender and got redder and angrier, and finally this past Wednesday, as puss started oozing out from the chunkier wounds he decided it was time to go see a doctor. Three prescriptions and one shot later we headed home. He’s on two antibiotics and has some cream he’s supposed to put on it. What was really amazing is it took less than 12 hours on the antibiotics for his leg to look better.

The thing is, we forget that he was getting cancer treatments for 18 months, and that those only wrapped up about six months ago. The chemo took such an obvious toll on him – he lost his hair and looked and felt awful, but he was on immunotherapy treatments for an additional year. And though the immunotherapy drugs didn’t make him lose his hair or look sick, the one thing ALL the cancer fighting drugs had in common was that they kicked the crap out of his immune system, leaving him vulnerable to infections of all sorts. He’s had two colds in the past six months – and this is a guy who never gets sick! Cancer is a real bitch, and the recovery is no cakewalk either! I’m going to try and make a bigger effort to remember that and try to keep him from doing any extraordinarily harebrained activities in the future (hahaha!!). Like I said, I’ll TRY.

Anyway, he’s mostly fine now (nothing’s oozing) and plans on staying out of mud pits for a while.

The plan now is for one more immunotherapy treatment, then we’ll settle into a six month checkup schedule. Yesterday we both were like zombies, unable to sleep and just waiting, waiting, waiting. As we sat waiting for the doctor and the test results today, it felt like we were waiting for God to come in and give us the thumbs up or thumbs down for, you know, Chuck to continue living. I know that sounds crazy but at that moment, that really is what it felt like. It’s hard – I have faith that over time it will get a bit easier living with the uncertainty as the next checkup looms – but given the alternative we’ll live with our new normal.

Here’s to living each day to the fullest, and never, never taking life, love, family or friends for granted.

Yesterday it was off to City of Hope where Chuck spent the day getting immunotherapy. it’s not nearly as bad as chemo, but it still takes a bit out of him, leaving him feeling flu-ish and tired for a day or so. He’s up and at ‘em today, mostly. His bloodwork yesterday was all good – his red and white blood cell counts are normal, his liver and kidneys are doing great, and Dr. Nade was impressed that he had just run a half marathon. Some people, it seems, have permanent side effects from R-CHOP like neuropathy and tiredness. Chuck is one of the lucky ones who handled it pretty well.

We finally got home home (all done with conference AND hospital) late yesterday afternoon. We’re off again this coming weekend to Solvang to take part in the Solvang Prelude. We’re doing the 50-mile ride and we’re staying at one of our favorite places in that neck of the woods: Hadsten House. Phew! Don’t get me wrong, I’m not complaining, really, I’m grateful. It’s been almost a year since we received the shocking news of Chuck’s cancer diagnosis. Wow, has it been that long already?

Thanks to all of the gods and angels and good friends and family that have looked out for and helped Chuck (and me) weather with such amazing resilience a very hard year.

Last Monday Chuck had a PET scan at City of Hope – his first checkup post-chemo and the fatty necrosis scare. We spent the past week in a state of increasingly high anxiety once again playing the always fun “what if” game – what if the cancer’s back?  – what if Chuck needs to go through chemo again…you get the idea. You know it’s bad when both of us were taking Adivan to get to sleep at night.

So today, once again we drove the familiar route to City of Hope, checked in, went to get blood drawn, said hello to all of the nurses then went in to see Dr. Nade, She came in and after asking how Chuck was feeling (any pain, any fever, any numbness or tingling? no numbness? really? none? the way she said that we thought for a minute that he was supposed to have numbness and tingling). She pulled up the PET scan, looked it all over, and said the magic words, “It’s all clear, you look fine.” It’s an indication of how tough we’ve gotten that we didn’t burst into tears at her words, though Chuck did pump his fist in the air when she turned her back.

As I write this, Chuck is in the treatment area getting his first maintenace round of Rituxan (the immunotherapy drug, see: http://en.wikipedia.org/wiki/Rituximab). He’ll get another PET scan in six months, and another dose of Rituxan in three months (and he’ll continue this cycle for at least 1-2 years). These visits will keep us honest and aware that we are in an ongoing battle with a insidious opponent. But with luck, determination, Dr. Nade and the City of Hope, we plan on ultimately winning the war. And hopefull as time passes we’ll get a bit better at handling the lead up to the visits.

Life is good. We feel so lucky to have such good friends and family who send us such positive energy. We feel so lucky, period.

Now we wait until Monday for the results. And let me tell you, waiting really IS the hardest part. It’s always in the back of my mind no matter what I do – only five days until we know, only four days, only three… The really hard part is knowing that this testing and waiting will be a part of our lives for many years. If all goes well, it won’t be quite as frequent as it is now (quarterly) after the first year. But I am still learning to live with the waiting. Chuck seems fine, but he always does. I notice it with him by his inattention. Most of the time, he’s a pretty focused guy, but when he gets preoccupied and inattentive like he’s been this week, I know he’s thinking about next Monday, too. It turns out there’s more to cancer than surviving – there’s living with the uncertainty that follows survival. Don’t get me wrong, it beats chemotherapy for sure! But it’s still an aspect of the disease that not only the patient but also the family has to learn to live with.

Thanks for listening, Internets.

This weekend we started things off with a race on July 4 (the Palisades/Will Rogers 5K & 10K). I did the 10K and Chuck did the 5K. Then we watched the Queen Mary fireworks show from a penthouse suite in a new high rise condo tower in Long Beach. Fun! The high rise view actually made the fireworks seem kind of weak – we were so high above them that they appeared rather small – a funny side effect! Yesterday  I continued my triathlon training and did another long swim along Bayshore Beach, while Chuck kayaked alongside me to make sure I stayed on course and didn’t drown. We’re really enjoying living by the beach these days. it may sound stupid, but in all the years we’ve lived in Long Beach, this is the first time we’ve really taken advantage of being so close to the water! Chuck has decided that I need coaching on my swimming stroke so is planning on taking me to the Belmont Plaza Pool for some training.

In an update on health issues, we got the results of our skin cancer biopsies. My mole is a-okay. Chuck’s thing was a basal cell and had to be removed, which happened last week. He’ll have a two-inch scar on his lower back from it. As the dermatologist said, he can tell people it’s a knife wound – a much more exciting story than skin cancer. Chuck continues to bounce back from chemo. His energy level is back to pretty much normal, and now he is attacking the 20 pounds he gained while on Prednisone. His hair has come back – it’s a little greyer now than before chemo and he has decided to keep it shorter now. He really enjoyed the low maintenance of baldness but his hair grows too fast and would require too much shaving to keep it completely bald now, so the short look is the next best thing. In fact, he’s taken to cutting it himself with his beard trimmer. His next PET scan is scheduled for July 20, and we’ll have the results July 27, when he will have his first follow-up immunotherapy (Rituxan) infusiuon. I admit to feeling a bit nervous about this. It feels like the real beginning of the rest of our lives. From here on out, we must learn to live with these periodic checks, and then live with the waiting for the results of those checks. In between them, life goes on and we don’t think much about it (especially now that the chemo treatments have ended and the tough physical side effects are just memories). But this is now part of our lives, part of that new reality that my sister told us about months ago.

Pics of Oxnard/Ventura/Santa Cruz Island are here, pics of July 4 are here.

We registered a long time back for the Santa Barbara Wine Country Half Marathon, a race we have run before and really enjoyed. After Chuck’s diagnosis, we still planned on going to the race – whether he’d be able to run it was a big question. As the date got closer, and Chuck was not bouncing back as quickly as HE had hoped, it didn’t look very promising that he’d be able to complete the distance. We drove up to Santa Barbara last Friday (the day before the race) with his sister Dina and brother-in-law Kenny. I thought Chuck was feeling pretty  discouraged about not being up to completing the race, as he was very quiet and generally subdued. To add insult to injury, his taste for wine had yet to return. On race day, we all headed to the start, with the plan being that Chuck would go half the distance then take a van or bus to the finish (halfway was a relay point, so we knew he could catch a ride there). We agreed I’d call when I finished and we’d find each other. Dina, Kenny and I all ran the race and finished around our expected times (Kenny was actually injured so shouldn’t have been running but did anyway). I called Chuck and found out why he had been so quiet the day before: he’d been plotting to run the whole race! And complete it he did in 3:29! I watched him cross that finish line with tears in my eyes, reflecting on all we’ve been through over the past several months. He ran those last couple of hundred yards as fast as he could and all I could think about was his unshakable spirit and indomitable optimism and raw gumption. It turns out he had been planning to try and finish the race the whole time – he wasn’t discouraged, he was anxious and more than a little excited but didn’t want me to worry so was keeping his plan to himself. Argh! As has been the case more than once over the course of our years together, I couldn’t decide whether to slug him or hug him!

Dina, Kenny and I and some of our running friends went wine tasting after the race and Chuck was our designated driver since, sure enough, he couldn’t taste any of the wines (and the ones he could taste all tasted bad). Pics here of the fun.

We’ve set our sights on a marathon in October in Healdsburg. And by then Chuck will get to do wine tasting, too!

His hair is already coming back. Currently it’s still fuzzy and seems largely white. It’s really too early to tell at this point, it’s just nice to see some head covering. He was looking at the pics of his head’s journey today and decided that he liked the bald with goatee look best (even better than the mohawk). We’re planning on heading up to Solvang for the Santa Barbara Wine Country Half Marathon on May 9 and his goal is to finish in about 3:15 – which translates to about 15 minutes per mile. The other big thing we’re keeping fingers crossed about is that his taste for wine will have completely returned by May 9. We’re going up with his wine-loving sister and brother-in-law and all of us are looking forward to doing some quality tasting. This past Saturday we went to dinner with some friends and Chuck tried white wine and didn’t spit it out in horror (his normal reaction for the past six months to anything except sickly sweet cream sherries and crappy white zinfadels). We’re hoping that in another week reds will start tasting like wine versus toxic chemicals.

We are also deep in planning for Chuck’s annual El Prieto race. Normally we have a special t-shirt designed and printed for all comers. Given the economy this year we’ve decided to go in a different direction – as in different from us spending a boatload of money putting on the race – and are asking folks who come to bring a donation for City of Hope. We’re feeling really, really grateful at this point, and without exaggerating believe that City of Hope helped save Chuck’s life and want to give something back and this seems like a good way to start.

So life as we know it goes on. The biggest challenge for me is to just get on with things – to let out the big breath I feel like I’ve been holding for six months. For Chuck it’s more a matter of not being too impatient as he gets back in shape after beong beaten down by chemo for so long. That and he doesn’t get to whine, “But I have caaaaaancer,” whenever he doesn’t want do things around the house. Not that he ever did that.