tag:blogger.com,1999:blog-3438891554127833361Tue, 10 Sep 2024 04:42:19 +0000rhabdomyosarcomairinotecanvincristinecity of hoperadiationHell Weekchemotherapycyclophosphamidethink negative2 steps strength 4 steps furyBAM-TCHLADEFCON 5Dr. GodKiglooRMSSEALSSU2CSi KahnThe Village Peoplealveolarapocalypse nowcancer bingochemo-braindudesexodusexodus 17fuck cancergroundhog dayhair losshoney in the heartintegratronlink armsmemorial dayportacatheterpulp fictiontiki powervillageyodaA place for C's friends and family to stay informed and stay in touch.http://featsdontfailme.blogspot.com/noreply@blogger.com (jhaygood)Blogger31125tag:blogger.com,1999:blog-3438891554127833361.post-9180136462855694847Sat, 30 Apr 2011 03:01:00 +00002011-04-29T20:01:54.095-07:00rhabdomyosarcoma(It's been a long time since there have been any posts here.  Not because nothing was happening, obviously.  But C has wanted to let you know where he is and has been, in his own words, and today being the one-year anniversary of his diagnosis seemed like a good time to do that.  So without further delay...) hello everybody! one year ago today, i was diagnosed with this crazy http://featsdontfailme.blogspot.com/2011/04/my-rhabdomyosarcoma-at-one-year.htmlnoreply@blogger.com (jhaygood)17tag:blogger.com,1999:blog-3438891554127833361.post-4072321142173023328Fri, 30 Jul 2010 15:58:00 +00002010-07-30T08:58:20.930-07:00city of hopedudesirinotecanradiationvillageToday's a good day, by current standards.  C has been staying at the village on the City of Hope campus - a good deal for people in his situation, if a bit seedy in a someone-smoked-here-twenty-years-ago kind of way.  It's no spa vacation, but it's filling a need. C is now on day 5 of radiation, which so far is a pretty mechanical process, and also on day 5 of the reduced irinotecan http://featsdontfailme.blogspot.com/2010/07/things-we-share.htmlnoreply@blogger.com (jhaygood)0tag:blogger.com,1999:blog-3438891554127833361.post-7766795819532612726Tue, 27 Jul 2010 19:20:00 +00002010-07-27T12:20:19.516-07:00city of hopeirinotecanradiationrhabdomyosarcomaThese posts are going to be scaled back for the time being - that seems to be the best way to go for now.  I just wanted to let you know what's happening, as a way for you to focus whatever it is that you have to focus in his direction.  C began his radiation treatment yesterday - that will be 5 days a week for the next six weeks - about a 5 minute procedure each time.  http://featsdontfailme.blogspot.com/2010/07/radiation.htmlnoreply@blogger.com (jhaygood)3tag:blogger.com,1999:blog-3438891554127833361.post-7297036010561934127Fri, 16 Jul 2010 15:48:00 +00002010-07-16T22:04:44.437-07:00integratronirinotecanradiationrhabdomyosarcomavincristineC is emerging out of the far side of Hell Week, he made it out of the house and came by for a visit.  We had lamb chops with a fresh mint sauce.  He had a few strawberries.  Hardly a fair deal.  One of the toughest parts of chemo seems to be eating.  Anything.  It really has become like a fast during the post-chemo week, which leads to too much weight loss.  http://featsdontfailme.blogspot.com/2010/07/bring-on-integratron.htmlnoreply@blogger.com (jhaygood)0tag:blogger.com,1999:blog-3438891554127833361.post-5772069806737029240Wed, 14 Jul 2010 06:09:00 +00002010-07-14T06:54:24.806-07:00cyclophosphamideHell WeekrhabdomyosarcomavincristineC is about 4 days into week 1 of chemo round 3, another dose of VAC (vincristine, dactomycin and cyclophosphamide).  He's been managing this phase solo, working his nausea meds, driving to a follow up injection appointment, and generally toughing out these rough days on his own. Independence and control are big factors in an out-of-control situation. If things go as planned then by the end http://featsdontfailme.blogspot.com/2010/07/hell-week-3.htmlnoreply@blogger.com (jhaygood)1tag:blogger.com,1999:blog-3438891554127833361.post-7319310760620631211Fri, 09 Jul 2010 07:09:00 +00002010-07-09T09:35:14.655-07:00chemotherapycyclophosphamideirinotecantiki powervincristineI don't know if it was the honey in the heart, or the holding in the light, or getting medieval, or the 4 steps fury, or the wheelsqueaking, or all the support and advice or the just plain showing up because it's all you can think to do. Maybe it was the Tiki Power... Any of those could be responsible for the great news we have today. But I think a lot of the credit has to go to the chemo. http://featsdontfailme.blogspot.com/2010/07/tiki-power.htmlnoreply@blogger.com (jhaygood)14tag:blogger.com,1999:blog-3438891554127833361.post-7574079093142349516Wed, 07 Jul 2010 07:53:00 +00002010-07-07T07:14:04.847-07:00honey in the heartirinotecanrhabdomyosarcomaToday is a big day to keep C in mind. He goes in this morning for an MRI that will determine how the tumor at the center of all the abuse C has endured has fared. It's been a very tough road for him - crushing fatigue, incessant, rolling waves of nausea, hair loss, weight loss - but the anecdotal evidence is that it's been worth it. C can breathe freely through that nostril which must mean http://featsdontfailme.blogspot.com/2010/07/honey-in-heart.htmlnoreply@blogger.com (jhaygood)0tag:blogger.com,1999:blog-3438891554127833361.post-3506186596639663349Fri, 02 Jul 2010 18:57:00 +00002010-07-02T17:00:47.892-07:00chemo-brainchemotherapyrhabdomyosarcomavincristineI haven't posted in the past week or so.  The fact is the posts would all sound pretty much the same, "C feels like crap, dealing with nausea and fatigue, etc., etc., etc." Yesterday we were at City of Hope for the week 2 of round 2 infusion.  The appointments for these mid-round infusions have been screwed up, some hitch in the communications at the hospital that messed things up lasthttp://featsdontfailme.blogspot.com/2010/07/start-paddling_02.htmlnoreply@blogger.com (jhaygood)0tag:blogger.com,1999:blog-3438891554127833361.post-4611879880081600264Fri, 25 Jun 2010 06:58:00 +00002010-06-25T07:15:54.288-07:00city of hoperhabdomyosarcomaSo for the past two weeks as we've moved through the maze of hallways and offices and examination rooms and infusion stations and nurses desks there's been this confusion. It goes like this... When you are getting chemo it goes in three week rounds. You get a big dose which is going to flatten you. That lasts about a week. Then you have week two, leveling out, seeing light at the end of http://featsdontfailme.blogspot.com/2010/06/healing.htmlnoreply@blogger.com (jhaygood)1tag:blogger.com,1999:blog-3438891554127833361.post-8771733605285001942Thu, 24 Jun 2010 06:41:00 +00002010-06-24T07:15:19.119-07:00rhabdomyosarcomaToday was tough in all new ways. C is simply suffering. Nauseous, knees-buckling suffering. The five days of irino are hardcore. He says without hyperbole that it's the hardest thing he's ever done. Clare went to pick him up so we could meet a new oncologist for another opinion but he just couldn't do it. It's almost impossible for him to make it to the refrigerator, so rallying to endurehttp://featsdontfailme.blogspot.com/2010/06/bridges-we-cross.htmlnoreply@blogger.com (jhaygood)2tag:blogger.com,1999:blog-3438891554127833361.post-3488020083893611588Tue, 22 Jun 2010 18:48:00 +00002010-06-22T11:48:25.742-07:00irinotecanrhabdomyosarcomaSU2CToday is a down day. C is grateful to have finished this round of irino - a five day, five sortie assault on cancerland. He describes the fatigue as intense - not tired per se, just physically unable to get out of bed. Something I just have to imagine. He mentioned how it's clear these medications are designed to just take you to that edge, finding that fine line between what the tumor can http://featsdontfailme.blogspot.com/2010/06/headbangers-and-wheelsqueakers.htmlnoreply@blogger.com (jhaygood)0tag:blogger.com,1999:blog-3438891554127833361.post-543096886013145015Sat, 19 Jun 2010 15:48:00 +00002010-06-19T16:29:07.574-07:00exodus 17irinotecanrhabdomyosarcoma After I posted that passage from Exodus 17 the other day Chandler tagged the actual Hebrew text - it definitely carries more authority in that ancient Hebrew script. As Molly Ivins once said referring to Pat Buchanan's culture-war speech at the 1992 Republican Convention, "It sounded better in the original German." Well Exodus 17 looks better in the original Hebrew. C started getting the http://featsdontfailme.blogspot.com/2010/06/this-thief-this-deceiver_19.htmlnoreply@blogger.com (jhaygood)0tag:blogger.com,1999:blog-3438891554127833361.post-7434895291260426072Thu, 17 Jun 2010 06:14:00 +00002010-06-19T08:43:47.222-07:002 steps strength 4 steps furyapocalypse nowexodushair lossirinotecanlink armspulp fictionrhabdomyosarcomaToday C goes in for the first infusion of irinotecan, a new drug in the regimen, which he has the experience now to know deserves some uncertainty and anxiety. It's a two and a half hour infusion - the longest yet (though this one's out-patient) and then the same thing for the next five days. So that's how he'll be spending his week, opening his vein to this wonder of modern science, a http://featsdontfailme.blogspot.com/2010/06/edge-of-sword.htmlnoreply@blogger.com (jhaygood)4tag:blogger.com,1999:blog-3438891554127833361.post-6706742165017643202Tue, 15 Jun 2010 06:35:00 +00002010-06-19T08:41:27.637-07:00groundhog dayirinotecanrhabdomyosarcomaAn email from C today: "Working away this morning, just looked down at my desk and it's covered with my hair." This thing moves in stages.  We kind of know what to expect but there's still that element of sad surprise, coming like in one of those war films - a car pulls up outside, the chaplain gets out, a knock at the door.  This time it's the hair loss. This whole ride starts with http://featsdontfailme.blogspot.com/2010/06/groundhog-day.htmlnoreply@blogger.com (jhaygood)0tag:blogger.com,1999:blog-3438891554127833361.post-5399226941902875119Thu, 10 Jun 2010 07:04:00 +00002010-06-19T08:40:07.583-07:00alveolaririnotecanrhabdomyosarcomathink negativevincristineyodaToday is Thursday, so C heads back to City of Hope for the second of his "down week" infusions of vincristine.  It's one of the easier treatments since it doesn't lead to nausea, though it's no walk in the park.  He's started feeling a bit of the neuropathy that leads to numbness in the fingertips, and just a general wiped out feeling. We're sorting out some of the treatment plans, andhttp://featsdontfailme.blogspot.com/2010/06/its-thursday-think-negative.htmlnoreply@blogger.com (jhaygood)0tag:blogger.com,1999:blog-3438891554127833361.post-5479510604739629029Fri, 04 Jun 2010 05:28:00 +00002010-06-19T08:38:58.552-07:00irinotecanrhabdomyosarcomavincristineBack to City of Hope today with C for some blood work, a follow up meet up with Dr. C to get some questions answered, and a quick infusion of poison.  It turned out to be Aloha Day where they celebrate survivors with a Hawaiian theme.  It was nice, and seeing C move through the crowd of other folks that have gotten this particular "you have cancer" newsflash was great.  He said, "http://featsdontfailme.blogspot.com/2010/06/back-to-city-of-hope-today-with-charlie.htmlnoreply@blogger.com (jhaygood)1tag:blogger.com,1999:blog-3438891554127833361.post-2866580724080270282Tue, 01 Jun 2010 05:26:00 +00002010-06-19T08:37:14.838-07:00memorial dayrhabdomyosarcomaSo today was Chemo Day 1 + 4, and C seems to be feeling better.  Past the worst of this first round, definitely a member of the worldwide group of Survivors.  He's been having clients in, getting work done with some great help from Jim (not me) who has stepped up and provided valuable Photoshop support. I think we all feel a little bit of stability returning, or at least the new normalhttp://featsdontfailme.blogspot.com/2010/05/tour-of-duty.htmlnoreply@blogger.com (jhaygood)1tag:blogger.com,1999:blog-3438891554127833361.post-4868045808643051776Sun, 30 May 2010 01:22:00 +00002010-06-19T08:35:44.836-07:00It's a slow news day at Camp C today.  A quick trip out to CoH for an injection that boosts white cell production.  C dealing with the wonderful feelings of nausea that come with the territory.  We're working on how to support him nutritionally, trying to figure out what works, what has worked for other friends/survivors, what's recommended, etc.  We'll be setting up some http://featsdontfailme.blogspot.com/2010/05/its-slow-news-day-at-camp-charlie-today.htmlnoreply@blogger.com (jhaygood)0tag:blogger.com,1999:blog-3438891554127833361.post-205342506274958795Fri, 28 May 2010 17:51:00 +00002010-06-19T08:33:40.857-07:00rhabdomyosarcomaSo today is the day, the day C finally gets reinforcements fighting this thing.  We know he has an appointment to begin chemo but we don't know when, they're waiting for an empty bed, so we spend the day waiting at C's house, which is good in a way because he can work.  He has a heavy load right now with a big project, so a little extra time worked out. We finally get the call to come http://featsdontfailme.blogspot.com/2010/05/malignant-gift_28.htmlnoreply@blogger.com (jhaygood)6tag:blogger.com,1999:blog-3438891554127833361.post-5569748390893953824Thu, 27 May 2010 17:37:00 +00002010-06-19T08:31:33.554-07:00 We have a new page up that you can get to via the "Tagged!" button at the top of the page.  It's a gallery of photos sent by friends, family and well-wishers with their Team C dog tags.  You can get tags by sending us an email with your mailing address to featsdontfailmenow at gmail dot com.  If you have a few bucks to support the tagging cause let us know that too. Link arms,http://featsdontfailme.blogspot.com/2010/05/tagged.htmlnoreply@blogger.com (jhaygood)1tag:blogger.com,1999:blog-3438891554127833361.post-7065590067366851903Thu, 27 May 2010 05:53:00 +00002010-06-19T08:30:57.068-07:00rhabdomyosarcomaToday was a big day.  Have I said that before?  Probably have.  After the purgatory of tests and results and waiting and Googling and missed phone calls and bad phone calls and data mining, after all that today we had appointments with surgeons and the oncologist and were determined to make a decision about the course of treatment so C could start fighting back.  No more http://featsdontfailme.blogspot.com/2010/05/holding-you-in-light.htmlnoreply@blogger.com (jhaygood)3tag:blogger.com,1999:blog-3438891554127833361.post-4778649346575643449Tue, 25 May 2010 17:09:00 +00002010-06-19T08:29:01.474-07:00Dr. GodWhile there hasn't been any specific progress in terms of treatment over the past few days C's primary oncologist, Dr. C, has kept it interesting by continuing keep us out of the loop in the midst of this complex, evolving situation.  It's just baffling to us.  I haven't written much about this but it's been a constant since we began working with him.  That's not really the http://featsdontfailme.blogspot.com/2010/05/first-do-no-harm_25.htmlnoreply@blogger.com (jhaygood)7tag:blogger.com,1999:blog-3438891554127833361.post-7217752150544726548Sat, 22 May 2010 01:08:00 +00002010-06-19T08:26:12.016-07:00cancer bingothink negativeThis blog isn't generally about breaking news, but this post is.  We just found out that the last of a series of tests, the tests to determine if C's situation is bad, or really bad, has come back negative, meaning just bad.  And for us right now that is great news.  It's a big deal, in a bunch of big ways.  It's a big deal in the toxicity of C's treatment, it's a big deal in http://featsdontfailme.blogspot.com/2010/05/ive-got-bingo-over-here.htmlnoreply@blogger.com (jhaygood)7tag:blogger.com,1999:blog-3438891554127833361.post-2852973867716959130Thu, 20 May 2010 15:43:00 +00002010-06-19T08:24:52.335-07:00rhabdomyosarcomaDateline: City of Hope.  Back for the afternoon, ready to get moved through the system, starting in the parking lot, past the valet, a quick stop at the patient check-in desk, get C his armband that IDs him in any department, stop by the lab to get some blood work done before today's procedure, then we have a seat in the waiting area.  There's a big screen on the wall filled with http://featsdontfailme.blogspot.com/2010/05/cancer-bingo_20.htmlnoreply@blogger.com (jhaygood)1tag:blogger.com,1999:blog-3438891554127833361.post-1261389030595593847Tue, 18 May 2010 04:38:00 +00002010-06-19T08:22:06.789-07:00DEFCON 5rhabdomyosarcomaToday was a down day in this journey, at least in terms of actual diagnosis, or treatment, or anything practical like that. But for us it started early and went all day in terms of the peripheral distractions. It started Friday with news that insurance was going to hold up the scheduling of an important biopsy. We got it scheduled anyway with the caveat that it might get bumped today if we http://featsdontfailme.blogspot.com/2010/05/defcon-5.htmlnoreply@blogger.com (jhaygood)2