Hitting the wall...

I hit the wall this week. Actually, lately I've been hitting the wall every day, usually late in the day. What do I mean "hitting the wall"? It's when I reach the point of total physical (and probably mental too) exhaustion and start shutting down. I can barely keep my eyes open (the fact that the skin around my eyes becomes dry and painful to even blink doesn't help) and just want to drop off into a deep sleep. Usually, I hit the wall late in the afternoon, and by the time I reach my vanpool, I'm truly ready to nap, which I do in the back seat, and wake up in time to drive home after being dropped off, and then if I'm lucky, maybe take a short nap before dinner. But I've been pushing myself pretty hard for the past few weeks - mostly because I've been feeling pretty good and have been getting out and doing a few things that seem like my PC (pre-cancer) life. I got to go razor clamming (even if I did get skunked), and have been serving as an assistant instructor with the Tacoma Mountaineer's latest Navigation class. I've particularly enjoyed getting back together with the Mountaineers folks - I've been an assistant instructor for this class before, but it's a little different this time - some friends who were in the Alpine Scrambles class that I was taking just before I was diagnosed are teaching it now. I don't think they expected me to volunteer to help this time around, and there was kind of an interesting little double-take when I showed up for class last week (I'm still sorting out some of the reactions). There may have been a little apprehension in talking about my cancer, and I hope that I was able to make them a bit more comfortable in seeing that I am living with cancer. And I hope that I didn't blow it today by not participating in the all-day field part of the class, which is conducted at the Carbon River section of Mount Rainier National Park. But more about that later.

I've been pushing myself, and I paid the price for it this week. I was so exhausted on Wednesday afternoon, that I could barely drag myself downstairs to my vanpool from my cubicle at work. I really hit the wall big time. I felt about as lousy as I've ever felt - everything ached, from my scalp to my toenails (I've described this once before as being tired all the way down to the cellular level - my poor mitochondria were just out of gas). We had dinner early and I went to bed and slept all the way through my alarm clock radio (which stays on for an hour) in the morning. I woke up at 10:00, had a quick breakfast and thought I'd head into work a little late, but made the mistake of laying down for a second, and woke up about 5 hours later. I'm glad that I can log into my office PC from home and do a little work from home so that I don't end up just dumping all my work on my coworkers to cover for me. I needed the rest. I probably should have worked from home on Friday too, but that stupid sense of duty and responsibility made me go in.

Lest you think that my stupid Y-chromosome completely runs my life and makes me continue to push myself too far, I did have to settle on an unhappy but smart choice for today. The field exercise for the Navigation class is really the best part of the course - you get to try your skills in the field with some reasonably challenging exercises. The fact that I'm actually pretty good at them is a point of personal pride for me, and I really enjoy showing other people how much satisfaction you can get from finding yourself in the woods with a map and compass. I was feeling a bit better on Friday, but spent a lot of time thinking about whether spending the day in woods today (which also meant getting up at 04:00 in order to get there by 07:00) was a smart thing to do. I really wanted to go, even if my participation was at a greatly reduced level, but the one or two good brain cells that I have left overuled the rest, and I decided to bag it and stay home. I hated to send that email to say that I couldn't go - I let them know that I had not been feeling well and that it probably wouldn't be a good idea for me to push it, lest I also become something of a liability if I got sick again out in the woods. Dammit. I feel like any ground that I made demonstrating that it really is possible to live with cancer by being in the classroom these past two weeks just got erased. But I'm still on the volunteer list, and I'll get it next time. And I'm going to get another shot at razor clamming - two final seasons for the spring have been announced for the second and fourth weeks of April. Revenge will be mine - I will outwit an organism that has a brain half the size of mine.

I spent the day kind of hanging around house today, attempting to take it just a bit slower. This was made a bit easier by the discovery that the starter in my truck seems to be broken, effectively keeping me grounded for the day. I foresee the guys at East Hill Tire being able to make a few more boat payments after they finish with me this coming week. Always proud to support the local economy. I did manage to cut the grass in the yard for the first time this year, and attempt to fight back the ever encroaching moss.

Everbody seems to be writing books about their experiences as cancer patients. Pennsylvania senator Arlen Specter has written a new book titled "Never Give In: Battling Cancer in the Senate". It details his latest battle with cancer in 2004-2005 - Hodgkins lymphoma (he has previously had two brain tumors - damn, this guy is really tough) while actively serving in the Senate. He appeared on The Daily Show with Jon Stewart" on March 19 to plug his book, and I'll have to say it was one of the better interviews I've seen. Specter shows an amazing sense of humor, and in the interview, he shows a picture of him, bald as a cue-ball from chemotherapy, shaking the President's hand. The discussion of that moment in the picture sticks in my mind, because he points out the President's body language in the picture in a way that many of us patients feel at least once. You sometimes get the sense that the person who's hand you're shaking is maintaining just a bit more distance - as if maybe you might be contagious, and maybe they'd rather be someplace else. In reality, we patients need to be kind of careful whose hands we shake - with compromised immune systems, we're more concerned that they might be contagious. It was a pretty good interview, and the folks at Comedy Central have the video clip that runs at a bit more than six minutes.

http://www.thedailyshow.com/video/index.jhtml?videoId=164522&title=arlen-specter

I heard an interesting story on NPR's Fresh Air that aired on March 12 - show host Teri Gross interviews comedian Robert Schimmel "Humor eases the toughest journey". Schimmel has a new book out describing his cancer journey "Cancer on 5 dollars a day (not including chemo) How Humor Got Me Through the Toughest Journey of My Life"". The interview is a little long at 38 minutes, 43 seconds -some parts are a little tough to listen to - his personal relationships are an absolute nightmare, but overall a good listen. Adobe Flashplayer will play the clip. I'm ordering the book from the big company named after an even bigger river, along with Specter's book, so I'l be able to offer reviews. I noticed that there are couple of "Cancer for Dummies" books out there too - I'm not sure what to think about that.

http://www.npr.org/templates/story/story.php?storyId=88109634

My friend Angie got great news last week - her oncologist says that she is officially in remission from her cancer. She got the news the last time I was in for treatment, so she and her husband came up to share their news. No more treatments - just checkups and scans for a while. I'm really happy for her, and I'd be lying if I told you that I wasn't just a little jealous. Sigh. Some day...

Tomorrow is Easter Sunday.

Here's hoping your chocolate bunnies are solid.

PS - numbers on last visit dropped by one to 17.

The news just keeps getting better...

A kind of scary story in this week's news about a contaminant in heparin, which is used as a blood thinner - the contamination may be responsible for the deaths of 19 Americans from an anaphylactic shock reaction to the contaminant.

tp://www.npr.org/templates/story/story.php?storyId=87961819

Much of the supply of heparin originates in China, already known for other cases of contaminated food, drug, and sundry consumer products distributed around the world. Particularly troublesome is the implication that the contamination may be deliberate. This one hits a little too close to home for me - I receive heparin every time we access/deaccess my port. The port is routinely flushed out before we start an infusion session (my biweekly "basting") with two syringes of sterile saline, followed by a syringe of heparin to ensure that blood won't clot in the catheter; and we follow the same procedure when we end an infusion and disconnect Silent Bob, leaving the heparin in the port and catheter. So far, the contaminated product in the US appears to be in vials distributed by Baxter International - not the source I receive (which I think is from BectonDickinson in pre-filled syringes). I'll be watching this story carefully and will have some questions when I go in this week for treatment.

In other items in the news last week, actor Patrick Swayze was recently diagnosed with pancreatic cancer. He is receiving treatment at Stanford University's Cancer Center, described as "radical chemotherapy". While advanced cases of pancreatic cancer have a pretty gloomy survival rate, perhaps Swayze's treatment will be successful and can be replicated with other patients - again, kind of close to home for me, as I have a friend with pancreatic cancer.

I'm not sure why I'm still awake enough to write this tonight. I've been up since 4:45 this morning with no sleep (and with the change to Daylight Savings this morning too - ugh) so that we could head down to the coast to go razor clamming. And for the effort, not much in the way of a catch - our determined party of three managed a paltry 4 clams, and for the first time, I was completely skunked and got nothing. And not only did I get skunked, but I broke my clam "gun" and then completed the trifecta by doing something that made a horrible "popping" sound in my lower back while trying one last time to pull a clam out of the sand. Even with the habitual "lift with your legs and not the back" that I try to do when lifting, somehow that missed it's mark this morning and had me temporarily immobilized for a few minutes (and just a teeny bit scared that I was going to repeat my TIA episode from January). After resting for a few minutes, it seemed OK, and so far is only just a little sore. I'll see what happens tomorrow morning when I get up. I'd say that the clams won this round pretty decisively.

An update regarding last week's post about access to this blog to employees at Swedish Hospital. Kate Wakefield contacted me on Monday to indicate that access had been restored - some of the widgets on the right sidebar (these don't show up in the version that shows up in your email inbox, but are present on the home site) can't be displayed, but that's a minor detail. And a correction - Ms. Wakefield's title is Sr. Information Security Engineer. Thanks again, Kate.

March is Colorectal Cancer Awareness Month. For details on some of the activities planned to raise awareness, please see http://coveryourbutt.org/.

This week's pictures above are of Samish Bay, WA from the drive back from Bellingham WA on Friday, and below another sign of spring in the backyard.

Spring is coming

A few apologies and thank you's are in order this week. Let's

start with apologies first - first to Jim, my volunteer enforcement ranger friend at Mt. Rainier National Park who pointed out that the sledding activity in the video clip in my last post appears to be taken in an area not designated for sledding. I don't intend to condone illegal behavior, so I won't publish any more incriminating video clips without running them past legal counsel. Do I really have to turn myself in along with a mug shot and fingerprints for your files? It seems a little excessive...

Second, a thank you and an apology. While listening to my favorite local jazz station last week, I heard an advertisement for a fundraising event at a local club. I got more information on line -the event was the second annual Make the Evening Matter fundraiser featuring vocalist Steve Tyrell to benefit the Entertainment Industry Foundation’s National Colorectal Cancer Research Alliance and the Seattle Cancer Care Alliance (SCCA is here in Seattle). It sounded like a fun evening at the Triple Door jazz club with great food from the Wild Ginger restaurant, fine wines, and auction items including a weekend in New York with a visit to CBS News to chat with Katie Couric, dinner at the 21 Club, and tickets to see the Late Night with David Letterman show. Sounds pretty good, eh? I emailed for more information, and got the cold slap of reality when I found out that it was a mere $250/person for the evening (it was a fundraiser, right?). Yikes - a bit rich for my budget, and also on Thursday night, which was treatment day. I emailed back and thanked them for the information, and indicated it was bit out of my budget, but as a current colorectal patient, I'd like to stay on their mailing list for future events. A few hours later, I got an amazing message back from them - they offered me a free ticket! Wow - I have to change my assertion that having cancer has damned few perks - this was an obvious perk. I regrettably declined their generous offer - treatment would run late on Thursday and the show would start just about the same time I was finishing. If I wasn't feeling well, I wouldn't enjoy the event - the Thai/Asian fusion food might be kind of pushing it on a possibly chancy tummy. I don't own anything that can be considered "cocktail attire" (the appropriate dress as specified in the evening's description), although it really would have been kind of cool to show up at the treatment center, dressed to the nines, and then zip off to the club for the show (gotta work on getting some "cocktail attire" for the next time this happens). And their offer was for one ticket and I simply couldn't ask them to extend their generosity for a second ticket. So I passed on the offer. And then it hit me - I had just done something that I hoped I would never do. I subtly played the cancer card without consciously intending to do so, and they offered me a ticket. Did I really need to mention that I was currently a patient? Why did I do it? Maybe it's that being a patient is so much a part of me that I don't realize how it creeps into everything, which bothers me a little. I didn't want the disease to define me, and I've let it happen. I offer a sincere thanks for the wonderful offer, as well as my apology to the folks at Make the Evening Matter for playing the cancer card - I will be more careful in the future. I hope the show went well and raised money for the cause.

And finally, a thank you to Kate Wakefield, who is the director of Security for Information Services (I hope I got the title right) at Swedish Hospital. My last two posts have ranted about Swedish blocking employee access at the hospital to this blog. I had a very nice conversation with Ms. Westfield on Friday and expressed my concern about blocking access to patient blogs. She has promised to contact the service that handles the screening of web addresses and restore access to this blog on Monday. If anyone at Swedish wishes to have access restored to other patient blogs that may be presently blocked, Ms. Westfield says to give her a call and she can remove the block. It was refreshing to be able to carry on a reasonable conversation and come to a mutually satisfying conclusion to the situation.

This week's treatment was pretty quiet. Our regular Thursday group is starting to thin out a bit so my usual friends weren't there. It was nice though to have Nina stop by for a short visit. Numbers are up again though, from 9.5 last time to 18 - up, down, up, down, up - OK, now it's time to go back down again and keep heading that way.

Pictures this week are signs of Spring starting to show in my backyard.