I've got a good feeling about this

Help fight ALS

2009-09-18T11:45:00.001-05:00

A good colleague of mine has ALS, sometimes referred to as "Lou Gehrig's" disease. If you can find it in your heart and wallet to make a contribution, please visit his ALS webpage and make a contribution to research fighting this horrid disease.

Coda

2006-03-29T15:58:00.000-06:00

I had my portacath removed this morning, and other than a CT scan and bloodtest in May, I'm done with any treatment. Finally.

It's become harder and harder to write for my blog, as I'm sure many of you've noticed over the last month or so. Writing for a blog (at least for me) followed this path:

1. Wow, people are really interested in me! I'm special! To paraphrase Sally Fields, "y'all really like me."
2. Wow, people are really interested in me... Uh Oh.

It became really hard for me to be totally honest with what I was going through for a variety of reasons. I think that some things are best left private, and this changed as my treatment began to show the light at the end of the tunnel. I also began writing more for Constant Reader (to steal Stephen King's idea) than for myself.

I liked the convenience of keeping people informed about what was going on with me, but I miss the personal side of it. I think that email, though not as intimate as a written letter is still better than standing on a soapbox and shouting "Woe is Me!" to the world. A phone call is worlds apart from a blog or email.

So I began to only post the bare minimum to keep everyone informed. But it just seemed too sanitary, clinical. And fortunately, I don't have those clinical worries anymore.

So, this will probably be my last post here unless I find a different use for the blog. I'd like to thank everyone at the Academy for honoring me by reading my blog, whether it was a daily event (Mom) or a more casual thing. It sure helped me get through the last 8 months.

love,

Cj

Bloodwork back to "normal"

2006-03-20T12:50:00.000-06:00

Today's lab tests showed my bloodwork has gotten back in line with what they expected, especially my white blood cell count. I feel the best I have in months, and actually enjoyed shoveling the snow on our sidewalks today. Which is good because we're supposed to get an additional 12 inches...

love,

Cj

Getting Better every day

2006-03-16T19:17:00.000-06:00

My post treatment life is getting better every day. I can eat almost anything now short of ice cream, with none of the cold effects. My feet still have a little bit of neuropathy, but it's diminishing daily. Just feels like part of the foot is asleep and tingly. The only side effect is that my stomach is still pretty sore. I think it's because after 5 months of meager eating, I'm eating full meals, and it's not used to that.

I hope my blood work looks better on Monday, as I don't want to have to do any more meds etc. I still have a lingering cold, but nothing out of the ordinary. My fatigue is a bit better too, and I'm sure that as I get more exercise, eat more, and continue to get good sleep, that'll resolve itself.

I never could have made it this far without everyone's help. Literally hundreds of people either sent words of support, prayers, and financial assistance. Thank you all! I'd be remiss if I didn't single out two people however: my wife, and my sister. Lesley, you were there to hear me complain every morning, to listen when I got a bit manic, and to give me a tremendous amount of support when your own hands were full. I can never repay you for it, but I love you for it.

Jen, I know this has been the most difficult year in our lives, and you were always my rock. You never hesitated to give me a swift kick in the pants when I needed it, or a tender kiss and hug when my fears were overwhelming. You instantly became a single mother for 8 months, and did a wonderful job. You never let me see your fears, and never let me take counsel from mine. When I hit rock bottom, you were there to lift me up. I have one goal in life, and that's to make it up to you for the last year.

love,

Cj

Done

2006-03-13T11:34:00.000-06:00

Last night was the final chemo dosage for me. I had bloodwork done today, and it wasn't that great. My white blood cell count (absolute neutrophil count for you medical geeks) was .6, a significant drop from the previous week. All it really means though is that I have to watch out for infections for a bit longer, since my body's ability to fight them off is reduced. I don't know why the sudden drop, but I'm not too worried about it. I go in for weekly blood tests, so hopefully the counts will jump up as the chemo agents work their way out of my system.

The sense of relief at being done with treatment is immense. I'm still fatigued, but that too will pass. I won't feel completely free until my CT scan in May, and my colonoscopy in October, but I feel pretty good right now.

Four days and counting

2006-03-09T15:35:00.000-06:00

Only four days left til i'm done with the chemo drugs. I feel pretty good now, though fatigue is still an issue. I think it will take me a good month to get all the drugs out of my system, and my blood levels up to normal. Then it's a matter of exercising enough to build my strength back up. Chasing the girls will help with that... ;)

love,

Cj

The finish in sight

2006-03-04T09:50:00.000-06:00

I'm almost halfway through this final round of chemo. It's been no better or worse than the previous from a physical standpoint, but from a mental one, much tougher. I just want to finish and put it all behind me. I'll have routine bloodwork done the next four weeks, and have my portacath removed on the 29th. Then I have a big layoff until May when I meet with the oncologist again, and have a CT scan done.

I'm down to 167lbs now, and though I used to hate being overweight, I hate being this skinny. I'll probably put a lot of the weight back on since I eat so well, but I'm just too skinny.

I don't know how patients with more serious cancers deal with this, where they are perpetually on chemo. I don't know that I'd have the strength to undergo a permanent chemo regimen. There's not much alternative, but when I read about folks in their 70's who have been on chemo for years, I simply shake my head.

That's the insidious thing about cancer. Other than the obvious symptoms, I was in no discomfort, no pain. I could have blissfully went on living in complete ignorance until it killed me. I'm sure it would have manifested itself in other ways at it progressed, but it's hard to reconcile what the cancer was like compared to the treatment.

love,

Cj

The Long and Winding Road

2006-02-27T14:03:00.000-06:00

Today was my last infusion. The next four weeks I'll have my routine bloodwork done at the clinic, then Dr. Pitsch will remove my portacath. After that I have a two month hiatus until I meet with Dr. Greene for a CEA (DNA) test. I'll have a CT scan done around the same time, and then it's a matter of waiting until October for my follow-up colonoscopy. I'll have to have those annually for 5 years, just to keep an eye on things.

As I was receiving my infusion, I tried to remember all that had happened throughout this eight month odyssey, and realized that "chemo-brain" has made it really hard to remember specific details. Traumatic days, like diagnosis and surgery stand out, but other days have started to blur together. I'm really glad that I started this journal, so that I can go back and stitch the pieces into a coherent quilt. I don't know if I'll ever try and make it into a book for the public; partially because I'm not sure that anyone else would be interested, partially because it's private, but primarily because I want to put this all behind me as quickly as possible.

Writing a complete journal ala Neil Peart's Ghostrider seems awfully intimidating, but part of me realizes that I still have a lot of coping to deal with. A lot of the stuff I went through I didn't really deal with, just put it aside for a later date. Whether I need to revisit those things, I don't know. Introspection can be healthy at times, but too much of a good thing at other times.

love,

Cj

Latest Lab Work

2006-02-20T19:57:00.000-06:00

Went in for a blood test today, all my stuff looks okay considering the chemo drugs.

love,

Cj

Cold, cold, cold

2006-02-18T09:00:00.000-06:00

It's another day of subzero temperatures, not counting the wind chill. Sometimes I feel insane for having left California for this weather, but I'd probably be complaining about wildfires/tsunami/traffic if I had stayed. And of course I wouldn't have met Jen...

I normally have one week off between chemo cycles to recuperate, but this time I have two weeks. Not sure why, but I'm going to enjoy feeling normal for two weeks, instead of counting the days until chemo starts. So my last round of chemo starts on Feb 27th, and ends on March 12th. Then I wait a few weeks for CEA marker tests. This is a DNA test that looks for signs of cancer cells. I can't take the tests until I've been off chemo for awhile as they skew the test results too much.

After that I'll have a CT scan, and assuming all is good, schedule to have my porta-cath removed. They'll monitor my blood work for the rest of the year, then I'll probably be left to my own devices. I'll have to have a colonoscopy done annually for the next 5 years, and if that's clear, then that'll go to 5 year intervals.

It's so rewarding to contemplate getting back to normal. I've dreamt so long of what I'll do when I'm better, and now the finish line is so close. Two tough weeks, then I can exhale...

love,

Cj

Snow Day

2006-02-11T07:46:00.000-06:00

Maddie woke me up at 7am, and we went downstairs to get some breakfast and let Jen sleep in a bit. Outside it's snowing lightly, and there's about an inch on the ground. Nice to know that we'll get a little moisture to help out with the drought, but I'd trade it for a 70 degree day...

love,

Cj

A generation apart

2006-02-10T14:21:00.000-06:00

I learned today that one of my favorite cousins passed away a few weeks ago at the age of 98. A few moments reflection made me realize that an entire generation of my family was gone. I grew up largely in beach communities of Southern California, and Helen was part of a group composed of my grandmother and grandfather, Helen and Joe Hudson, Mary Ashbrooke, and Bobby and Ed Allatt. Forged by the Depression and WW2, they were some of the most self-reliant people I've known. Joe and Granddad learned to fly, and literally went from biplanes to the jet era with Pan Am. They built homes, raised families, and lived with an ethic that seems to be slipping into myth.

For me, I learned that hard work was always rewarded, and that honesty, thrift and other "old fashioned" values were what defined you. From Helen I learned that being kind, graceful and considerate towards others was how grown ups were meant to act. It's sad to say that so much of these social graces seem lost in our culture today.

A few years ago when "The Greatest Generation" was published, I scoffed at the idea that our current generation wasn't as good as the WW2 crowd. I felt that when called, my generation and the following ones would make the same sacrifices, endure the same hardships to keep our country great, to raise our children to be strong. Yet looking back, I try to measure myself against this group and find myself falling so short. We've grown spoiled with all this generation provided, and discarded a great deal of the values they espoused. With Helen's passing, the world is truly diminished.

love,

Cj

19 days of treatment

2006-02-07T18:37:00.000-06:00

Ok, now I'm counting the days. I won't be done in 19 days since there's a week off between chemo cycles, but only 19 more days of chemo. Then a few blood tests, a CT scan, and assuming everything is clear, I'm done.

love,

Cj

Subpar Bowl

2006-02-06T13:13:00.000-06:00

Forget the dropped passes, the blown coverage, the referees who acted like they had put their life savings on the Steelers. This was a bad, bad game. Pittsburgh played an incredibly bad game, and yet still won. I doubt this game will ever be shown on highlight reels.

love,

Cj

Sunny Saturday

2006-02-04T08:34:00.000-06:00

I'm almost halfway through this chemo cycle, and it seems pretty different than the others. I'm much more fatigued, but feel less side effects. I wish my appetite was better, but mostly I'm thirsty for an ice cold drink. Can't have that for at least 5 more days, but at least I can sip cool drinks. Food just doesn't appeal much. I'm not losing weight too fast, about the same for the last three cycles.

I'm just far more tired than before. This is probably a red blood cell thing that'll improve as time passes. According to the doc, my bloodwork is right in line with what they expect. No need for any infusions or procrit etc.

My mental attitude is much better too. I'm very impatient, ready to get back to living. I think that's healthy.

love,

Cj

No News is (generally) Good News

2006-01-30T16:14:00.000-06:00

I know that a lot of you follow this blog to keep up with my health, and I appreciate this loyal following. Sometimes it's hard to post new stuff when each day seems the same. So if my last post was positive, I'm probably doing okay. During my week off between chemo sessions, I'm so busy that writing often falls by the wayside. And during chemo sessions, well, unless I'm feeling extra crummy, I don't have the energy to post.

It may seem counterintuitive that I post more when I feel bad, but that's how I draw strength from everyone, when I need it the most. Whether you email, phone, or send an old fashioned letter, it's all good. And the same goes for correspondence for Jen. She needs it as much (and oftentimes more) than I do. Although I don't like what I've been going through, I can't imagine how hard it is for her.

So today is the first day of the second to last chemo session. It sucks, but I'm so focused on the endgame (5 weeks left, or 34.5 days) that I'm not going to let it get me down mentally. I think that makes a huge difference in giving me extra strength and motivation to get through the day, to take the infernal pills, and to put one step in front of the other.

I'm listening to my music collection through a Squeezebox. It lets you keep your music on your computer, and streams it to your receiver. I'm so used to using my iPod or car stereo for music that I forget how much better it sounds through a good system. And I also forget how powerful music can be, to make you beam with happiness one moment, then sink in sadness when a song brings back a melancholy poignant memory.

love,

Cj

The winter of my discontent

2006-01-20T09:45:00.000-06:00

It's snowing softly now, what native Nebraskans call a light dusting. For someone who grew up in sunny Southern California, it's definitely snow. It'll all be gone by the afternoon, and then we'll be back to the gray, cold winter. My lawn is brown, the trees a vague reminder of their springtime glory. The wind is ever-present, whether it's 30 fahrenheit, or 50.

This winter has been much more difficult than any I've faced, mostly because I've had to do so much waiting. Waiting for chemo to finish, waiting to start my business, waiting for a warm sunny day when I can take my daughters out for a walk to the park, waiting to feel normal again. I don't think the latter is going to happen that fast. I have some permanent reminders of my journey, and I know that I've changed in immutable ways that will only manifest over time.

My daughter drew a picture the other day, basically just several vertical lines in different colors. One line was for Mommy, one for Emily, one for Auntie, and one for Uncle Rod. The final line was horizontal, and when asked, she said that was me "resting." It made me sad to think that I've been sick for so long that she's become accustomed to me being in bed, or resting most of the time. But from her eyes, her three year old perspective, it has been forever. I can't wait until she has no memory of me being sick, no memory of me being more an observer than a father.

When I awoke this morning, the first thing I did was wake her up and give her a big hug and kiss.

love,

Cj

Batman Begins

2006-01-18T13:44:00.000-06:00

I just re-watched Batman Begins on DVD. I had watched it in the theater when it first came out, and had been impressed. Not only did it have a compelling story, but it also had an excellent cast that fit. Michael Caine, Rutger Hauer, Morgan Freeman, Liam Neeson, etc etc. The story was much darker in theme than the last few Batman movies, but it did an excellent job of establishing the backstory to Batman. Even if you don't like comic based movies, I think you may like this.

In contrast, I'm still upset about how bad King Kong was. Forget about the special effects, they were fine, even outstanding in instances. But I always felt like I was watching computer generated graphics. The story is so feeble and short, with cliche'd characters, that you really don't care about them. And the casting was atrocious. I don't know why Naomi Watts was cast, but her performance was poor, only surpassed in ineptitude by the miscast Jack Black. It seemed that Black's acting reportoire consisted of a cross between quizzical scowl and raised eyebrow. Being fair to Black, it's not as if his role was something that an actor could sink his teeth into.

When I watched King Kong in the theater, I was still recovering from my surgery. When I sat for too long in the same position, I experienced a lot of pain. At the time, the length of King Kong exacerbated this pain, and I thought perhaps I was hard on it for no justifiable reason. Yet looking back, I still think that Peter Jackson was exercising too much self-indulgence in having the movie run so long. We don't even see Kong until 90 minutes into the movie. Some movies deserve to be long (any of the LOTR movies for example), yet there's a disturbing trend. When a director is successful and in high demand, there are less and less restrictions placed on them by the studios and producers.

Restrictions and constraints are important for successful movies in my opinion. if money's no object, then the director will spend a lot of time doing reshoots until the scene is "perfect." Yet many scenes are actually better when the pressure is on to get the shot in the can. Pressure is a good way of forcing directors to focus on what's really important, instead of indulging in excess shots and scenes that don't propel the story. I think a perfect example of this is George Lucas. When he was filming Star Wars, he was beholden to 20th Century Fox for money and script approval.

This led to him having to make hard decisions about which scenes to shoot, and which to include during editing. The result: his best movie. Fast forward twenty five years, and look at Episode 1-3. Now I'll grant that the special effects are much better, but these movies have little heart. Lucas is surrounded by yes-men and sycophants who won't tell him no. Gary Kurtz who was the producer for Star Wars and the Empire Strikes Back left Lucasfilm partially because Lucas didn't want to hear what Gary was telling him. Now Lucas indulges himself in jokes about flatulence, camel excrement, and senators run amok. All because he financed the movies himself. All because he has no restraints, no real pressure, nobody to answer to.

I don't begrudge Lucas the right to do so. It's his universe, so he can play with it as he wants. But I don't think anyone will be discussing the cinematic merits of his last three movies in 30 years. The financial return will be well remembered, but for most people, the vision of Jar Jar Binks has tarnished what was once a promising director's legacy. This should be a cautionary tale for any of the new breed of directors.

love,

Cj

Day Three

2006-01-11T09:11:00.000-06:00

I think that this cycle is going better than the previous two, or I'm just coping better. I still have the same side effects, but my energy level and mood seems much better. Each day has good times (and bad times). I've been better about getting plenty of sleep, and that seems to be the big difference. If I could kick this cold that's been lingering for weeks, it'd be even better. I hope things keep going this way...

love,

Cj

Six Months

2006-01-09T18:05:00.000-06:00

I just realized that we've crossed the six month threshold in my cancer treatment. Why that makes a difference, I'm not sure. We measure so much of our lives in years, and that just seems like a long time. I have a hard time looking forward six months, and looking back to last summer makes me sad when I think of how much time and energy was consumed by my cancer.

According to the chemo schedule, I should be done taking chemo on March 4th. Eight weeks to go.

love,

Cj

When less is more

2006-01-09T12:49:00.000-06:00

During today's clinic visit, I was told that I don't have to go through six chemo cycles as originally planned. Instead I'll just do five. I'm not sure why the reduction, but part of me doesn't care. It might be how I'm holding up with the current dosages, or we may have just misunderstood the oncologist when he outlined the treatment plan. Either way, one less cycle. I was so happy I almost cried.

love,

Cj

Stop, I want to get off

2006-01-05T19:41:00.000-06:00

Time goes so slowly during chemo, and speeds up too quickly during my off week. Then I start to dread the upcoming Monday. Oh well. At least I have a good idea of how each cycle will go now. I just need to get through the first 4-5 days, then it starts getting tolerable.

love,

Cj

I for one, welcome our new media overlords

2006-01-02T10:14:00.000-06:00

Newton Minnow famously stated that when tv is bad "nothing is worse" and most of what we watch is a "vast wasteland." When cable tv arrived, pundits always touted that "now we have 700 channels, and nothing to watch." Well, today I realized the true, sublime beauty of cable; AN ALTERNATIVE TO THE ROSE PARADE.

See, I grew up with a tv that only received the Big Three networks. Oh, PBS might have come in on some UHF channel (ha, do people even know about those anymore?), but you were generally stuck with ABC, CBS, and NBC. So you would wake up only to discover a truly Orwellian conspiracy; everyone broadcasting the Rose Parade. For hours upon hours. Endless footage of floats with stars past their prime waving to crowds in Pasadena. I truly hated the Rose Parade. Mind numbingly boring. As a kid, nothing could be more boring. I dreamt of a float catching on fire and setting off a chain reaction of burning floats. I hoped it would be like the crash of the HIndenburg, all over in 90 seconds or so. And so I suffered for years.

Yet this morning, as I watched the same three outdated media dinosaurs broadcasting the Parade, I gleefully changed to a different channel and breathed a sigh of relief as I realized that my kids won't grow up traumatized by repeated overexposure to inane floats. Their giggles and laughter at Barney left me content that I had fulfilled my parental obligations by making their lives just a bit better than what I lived through.

love,

Cj

Christmas in South Dakota

2006-01-01T17:38:00.000-06:00

Christmas In Lincoln

2006-01-01T17:31:00.000-06:00

Home

2006-01-01T17:19:00.000-06:00

Five hours driving on seriously reduced padding is no fun. But the payoff is in seeing the smile on the face of your children's grandparents. Dutch lives for his kids and grandkids, and this Christmas was no exception. Maddie went toboggoning in the snow, and Emily charmed the pants off everyone who held her. All in all a great visit.

love,

Cj

3 more days

2005-12-30T11:14:00.000-06:00

Only three more days of chemo, then I get my rest week. After that, only four more chemo cycles til I'm done with treatment. It's nice to see some sort of progress towards the end.

Heading up to celebrate a belated Christmas in South Dakota. Should be fun.

love,

Cj

Skinny Me

2005-12-27T15:56:00.000-06:00

Funny how you become accustomed to your own skin. In high school I weighed a stout 150lbs. For a 6'3" guy, just imagine Dachau. But that was me. As I got older, and stopped being a basketball junkie, my weight began to rise, to a peak of 220 or so. This was the new me, and though I didn't like being out of shape, I liked being bigger.

Yet cancer had different plans for me. Between surgery and chemo, I'm back down to around 175lbs. Not bad actually for my height, if I was in shape. But I'm not. My legs and my posterior (what's left of it) are so weak and skinny. Each round of chemo seems to knock me down about ten pounds, and I gain 5-6 of it back during my recovery week. So after I finish my chemo I'll probably be back down to my high school weight. Irony is so much fun.

But there is light at the end of the tunnel. My wonderful eating habits are in such flux, that there's a chance that I can put the weight back on in a healthier fashion. I'd love to end up at 180lbs, with a six pack for abs. But who am I kidding. I just don't want to look like the guy rescued from Dachau.

love,

Cj

The amazing grace of children

2005-12-25T18:15:00.000-06:00

No matter how ill you are, how unwell you feel, it's hard to resist the charms of little kids who are basking in the fun of Christmas Day. Maddie and Emily have had more fun today than in months, at least if it's measured in decibels. Even an old Scrooge like myself has been able to forget about myself and just watch the innocence of youth at play.

love,

Cj

Wishes for Santa

2005-12-24T08:50:00.000-06:00

It's been hard to have a happy attitude during this Christmas season. Whenever I've been in public, I've wanted to scream out loud, "Don't You People Know I'm Going Through Chemo?" "Don't You Know Rachel's Gone?" It's felt like I've woken up as a lefty in a right handed world, where the scissors just don't work.

Through this my faith has been sorely tested. I suppose that's a good thing. But I've had enough testing, thankyouverymuch. My family has also been sorely tested by this year as well. I never realized how hard sickness and death can hurt a family until this year, and though I'm amazed at our family's strength and resilience, I've had enough amazement, thanyouverymuch.

So next year, please just bring me a nice quiet year. Where the agony of chemo isn't quite so sharp, where the loss of Rachel doesn't make me miss out on the joy of my daughters. Where I can pray for others in need instead of worrying about myself so obsessively. Where I can feel the beauty of the world without feeling its poignancy.

love,

Cj

For Shaylyn

2005-12-24T08:44:00.000-06:00

Below is the address for Shaylyn's trust fund. For those of you who don't know, Shaylyn is my 3 year old niece who lives in Virginia Beach. Her mother was murdered on Memorial Day, and she lost her father at the same time. So much of her financial support depends on the kindness of strangers. If you can find it in your heart to send a check to the bank administering the trust, it'll help Shaylyn immensely.

Shaylyn Garrett-Scher
c/o Towne Bank
297 Constitution Drive
Virginia Beach, VA 23464
757-473-2506

love,

Cj

Doctor's verdict

2005-12-23T11:12:00.000-06:00

Well, after two visits to the doctors (yesterday and this morning) it appears that the only problem was dehydration. My blood pressure was fine today, and I feel much better. The cold intolerance is starting to fade, which helps me drink more. And my weight loss has stopped. So all the things that were irritating are starting to subside a bit. Hopefully this will be a good weekend.

love,

Cj

Bad Night

2005-12-22T08:46:00.000-06:00

I awoke in last night and made my way to the bathroom. I don't remember why, but soon I was in front of the vanity, and then passing out. I fell like a sack of potatos, banging and scraping myself pretty badly. The next thing I knew, Jen was on the phone with 911. I was barely lucid, but I thought I'd be okay. Just very groggy, sweaty, and scared. Jen was too. The last thing I wanted was some paramedics stomping through the house.

After 5-10 minutes, I was able to crawl back into bed with Jen's help. Then nausea struck hard. I threw up for about 5 minutes, but since my stomach was pretty empty, it wasn't a big deal, just unpleasant. We went back to bed, and Jen watched over me like a hawk. I'm sorry Honey, I didn't mean to scare you so bad. :(

So today I'll be phoning the multitude of doctors I have, trying to figure out what the heck happened. It's been over 30 years since I last fainted (as an acolyte), and I don't want this to be a recurring thing. I'm afraid to drive or do anything like that.

love,

Cj

P.S. I went to the oncologist's office today, and they did some blood tests as well as testing my blood pressure. Looks like I was dehydrated, so they gave me a bunch of fluids for an hour or so. Seems better now, but I never saw the last blackout/fainting coming. I go back tomorrow to have them run my BP again.

Side Effects

2005-12-20T10:59:00.000-06:00

I want to log the side effects I encounter on a daily basis, so that I can compare each cycle.

Monday:

Nausea, but no vomiting.
Cold intolerance when drinking. Feels like choking.
Achey, tired feeling.
Foot neuropathy, feels like pins and needles on my feet, but comes and goes. Barefoot is a bad idea, socks help.
Sleep wasn't so hot either, woke up and had a hard time getting back to sleep.
Vision blackouts. When I stand up, I often lose all or parts of my vision. This is unique to the days following an Oxaliplatin infusion.

Tuesday:

Nausea.
Cold intolerance.
Foot neuropathy.
Loss of appetite.
Vision blackouts.
Vomiting

Wednesday:

Nausea.
Cold intolerance.
Foot neuropathy.
Loss of appetite.
Vision blackouts.
Fatigue

love,

Cj

Gratitude

2005-12-19T18:23:00.000-06:00

In the midst of really cruddy side effects, it's an appropriate time for me to thank everyone for the kindness and generosity that our family has been blessed with. This has ranged from cards and emails to financial assistance that has left me silent until now. But I can't remain silent any longer. We even had an anonymous gift that was far more than I ever could have hoped for. Whoever sent it, thank you. And to everyone else who had a kind word, or helped out in their own way, thank you. We can never begin to repay everyone for their help, but we sure hope we can reciprocate the love we've received. And someday, we'll be in a position to help out someone in need.

love,

The Jacksons,
Chris, Jen, Maddie and Emily

Round Two

2005-12-19T14:35:00.000-06:00

I started my second round of chemo today. After feeling so well last week, it's a shock to instantly feel like this. I hope it passes quickly.

love,

Cj

King Kong

2005-12-17T15:58:00.000-06:00

If you're tempted to spend your money on tickets to King Kong, I've got one word for you. DON'T! Ignore my advice at your peril.

love,

Cj

Out of the surgeons hands

2005-12-15T16:40:00.000-06:00

Had my last appointment with my surgeon today. He said that I was healing very well (all things considered). He said that it could take up to a full year to recover from the surgery, but that I could do any exercise I wanted. Of course I need to use common sense (ha!).

I have to go back in a year for a colonoscopy, and then another the following year. If those are both clean, then I'll switch to once every 5 years.

All in all a good day.

love,

Cj

Sick no more

2005-12-13T09:36:00.000-06:00

I'm no longer sick. My cancer has been surgically removed, and technically I'm cancer free. That doesn't mean I'm well though. But I can't think of myself as sick anymore. It's just too tight a straitjacket.

This week is a chemo free week. I'm going to enjoy it.

love,

Cj

Winter Wonderland

2005-12-10T14:38:00.000-06:00

I've always wished for the type of Christmas weather that Lincoln always managed to avoid: snowy and cold. Lincoln was always cold, but snow never seemed to fall as much as I would have liked, and the wind is enough to make you stay indoors through the duration. But this year there's been more snow, although the wind is still omnipresent.

I've been feeling much better the last few days. I think it's a combination of several factors: the initial chemo infusion is wearing off, and the pills aren't hurting me as much as the infusion did. My recovery from surgery seems much better also. I still have aches and pains, sometimes quite excrutiating, but nothing like the first month. I would be surprised if there was any lingering pain in another month.

My sleep is another thing. I still wake up about 2 hours after I fall asleep. Every night. But, I'm able to fall back asleep now, and that helps a lot. I still take two pain pills along with a sleeping pill/anti-depressant, and those make it easy to fall asleep. But that wasn't really the problem.

My depression is much better, or at least on an upswing (hate to see the downside again). My emotions still seem to close to the surface, but I'm able to control them much better. I don't know if it's the anti-depressants, or something else, but it's nice not to be so down all the time.

I've come to realize that I had to change my perspective on my whole cancer situation. So much is different now with my day to day life, from what I eat, how much energy I have, how I sleep, my body's plumbing, you name it. I kept expecting things to return to "normal" and I think some of the frustration that fed my depression came from this. Things are never going to be "normal" again, whatever normal was. (Some of you are laughing at the idea of me being normal...)

But that's okay. I just need to recognize the things that aren't going to change, and deal with them. And for the things that will change, just be patient until they return to "normal." Acceptance is easy to say, but not always easy to accomplish. But looking back on this journey (5 months and counting), I'm amazed at where I've gone, and what I've been through. It's been an incredible, horrifying path, but one that will inevitably define me once I venture off the path.

love,

Cj

They were supposed to be Wookies, dammit!

2005-12-08T10:14:00.000-06:00

Even though I despise the Ewoks, I have to admit that Emily looks awfully cute in this snowsuit.

Step by Step

2005-12-06T10:29:00.000-06:00

Only five days left in this chemo cycle, not that I'm counting...

It was below zero this morning. That's awfully cold. I had stayed up until 11pm, watching the Seahawks on Monday Night Football. I like the Seahawks, but I was really curious to see if going to bed at 11 would improve my sleep. It didn't. I woke up about three hours later, and couldn't fall asleep for an hour or so, and then only fitfully. Just need to give the sleeping pills time to build up. I'll try something different if I'm getting the same results after two weeks.

love,

Cj

There's no place like home

2005-12-04T10:56:00.000-06:00

Amidst the crisp cold winter that surrounds our house, I find myself expecting things to get better sooner than I should. There are times when fight the urge to cry over something trivial, and have to scold myself for expecting two days worth of anti-depressants to fix things.

I expect my chemo to be easier, but last night I had a bad bout of diarrhea, and no Immodium-AD to fight it. So off Jen went, into the cold to Walmart. Diarhea isn't a trivial matter for me, nor nausea, as I can quickly become too dehydrated. If that happens, I'll get hospitalized, and that's the last place on earth I want to be. For some reason, the Immodium comes in blister packs that are almost impossible to open in a rush. It's like you have to reach a Zen calm, follow the directions exactly, and then you have a 50% chance of getting the damn pill out. Fortunately the pills did their magic, and I was able to get back to bed.

I slept as well as I have in the last week, but still far from what I need. I just need to give the meds the time they need. I've noticed that despite the Zofran, I'm starting to feel a bit nauseous. Nothing serious, just that feeling that all is not well, and that knowing the location of a sink/toilet/trashcan is valuable information. Hopefully this is just a side effect from last night. The last thing I need is something else affecting my appetite/diet.

It's 11 degrees outside, the type of winter I always complained about not having. There's snow on the ground, not too much wind (maybe 5 degrees of windchill), and it looks tranquil. Last night as I waited for Jen to return from Walmart, I stumbled across The Wizard Of Oz. I've always associated that show with Rachel, and I expected to break down watching it, especially when Dorothy returns to Kansas. I didn't, somehow feeling that this was a good memory I should cherish, not one I should fear. Of course, I'm crying now as I write this. Rachel I love and miss you...

Cj

Hello Darkness My Old Friend

2005-12-02T15:59:00.000-06:00

Depression is such an ugly, sinister thing. It robs you of any emotional energy that you need to accept reality, and it distorts your view of that reality. I realize now that I've been seriously depressed for the better part of two months.

I think my surgery was like a long winter, piling snow in drifts of tremendous height. The recovery from surgery accelerated the snowfall until the risk of avalanche was critical. Then being fired was the twig snapping that set off my depression. I tried to fight it, as I had fought off depression when I was first diagnosed with cancer. But this was far more serious.I was truly losing hope and understanding of who I was, and what I was fighting for.

I've never been fired before, and I kept returning to the conundrum that I'm a middle aged computer professional who is easily replaceable in this day of overseas outsourcing. Mix in the fear of discrimination due to my cancer and my professional outlook appeared bleak. I've also been insecure ever since I entered this field, what with friends who are true wunderkind with the new technologies that spring up overnight.

So I tried to pretend that things were fine, that everything was going according to plan. Well it sure wasn't my plan. Once I started the second phase of chemo alarm bells were sounding all over the place. I was far too tired, more than the chemo should have been causing. I continued to have trouble sleeping at night despite new drugs. I slept in the day, and slowly lost any drive or energy to participate with my girls. I avoided my wife as I knew that she'd see something was wrong, something far worse than my chemo.

But when you have people who love you and care about you, you can't help but cling to them. I realized that when I was afraid to call people for fear of breaking down, well, I had already broken down. A phone call, and a sit down with Jen made me realize that I didn't have to try and beat this on my own. I wasn't fighting my cancer on my own, so why would depression be any different?

I'm not better. Not by a long shot. But, I'm on a new sleeping agent/anti-depressant. I'm not as afraid as I used to be about chemo and cancer, though I'm still awfully afraid. I don't think that fear will go away completely for a long long time. And I realized yet again how many people love me, and take time out of their days to think of me, even for just a moment. And I pray that regardless of my health, I'm always fortunate in that way.

love,

Cj

Intolerance

2005-11-30T17:07:00.000-06:00

I can't drink anything cold. I get a gagging reflex when I do, and if I touch cold stuff it feels like frostbite. This is a side effect of the oxaliplatin infusion. It sucks. Warm water is horrible to drink. At least the nausea from the Xeloda is under control. My biggest problem now is appetite and fatigue. I'm still not sleeping that well, so the last three days haven't been that much fun. At least my recovery from surgery seems to be getting much better.

love,

CJ

Adventures in Chemo

2005-11-28T17:59:00.000-06:00

I have two chemo drugs; one a pill (Xeloda) and one an infusion (Oxaliplatin). I have to take four pills twice a day for the Xeloda. This morning I was hungry, and had my English muffins and juice before the pills. They recommend taking the pills with milk or food. About an hour later I was vomiting and quickly took some Zofran to stop the nausea. I didn't think that the side effects would kick in so quickly, but it might have been stress or nerves. Dr. Greene said that some people do react that quickly, but he agreed that it could have been nerves. Either way, not the best way to start the day.

I drove to the clinic and had my lab work done, then met with Dr. Greene. He said I'm a bit anemic, and that if it gets worse they'll give me a shot of Procrit to boost it. Then I went in to get my Oxaliplatin infusion. They're using my portacath, so I didn't have to go through an old-fashioned IV. The infusion took about 2 hours, and other than being boring, I didn't notice any side effects (during the infusion).

When I got home, I quickly discovered the main side effect of Oxaliplatin: intolerance to cold. I tried to drink a glass of apple juice, and the pain was amazing. It felt like I was going to have lock-jaw. So no more cold drinks, ice cream, etc. I also need to be careful touching anything that is cold. Funny having this type of chemo at the start of a Nebraska winter...

The good thing is that this makes the lingering pain from surgery seem not so bad. That has been better each day over the last week, and I feel like the end is in site for that. Then again, I'm still taking a lot of pain pills. Next week I'll try and see if I can throttle those back in the day time. I don't want to attempt that at night until I'm getting solid sleep.

I'm awfully tired. Dr. Greene said this wasn't one of the side effects of either drug, but www.webmd.com disagrees. Stress could be playing a big role in that, but it's not like I'm getting 8 hours of sleep either. Oh well.

Not drinking cold beverages for four months is going to be irritating. With the wide variety of foods I eat, (ha ha) at least I can still eat what I want except for desserts.

The infusion center has comfortable recliners, and you can watch TV (listening with wireless headphones). Every now and then a nurse walks by with a tray of snacks, kind of like an airline attendent. They try to make you as comfortable as possible, and watch you for any serious side effects.

The funny thing is, at the clinic I'm normal. The majority of people have or have had cancer. So if you feel like talking, you don't have to explain a ton of details that a layman would need. The sad thing is that there are so many people there. Young, old, white/black/asian/latino, male/female. The real outsiders seem to be the family members who come to provide support. They are naturally distressed, and scared, and out of their comfort zone. I wish the clinic had some sort of support system for family members. There are outside support groups, but those are meant more for patients. Being a caregiver has to be a difficult task. Jen has been so wonderful and supportive these last 5 months, but I know it's taken its toll on her.

love,

Cj

Chemo sucks

2005-11-28T16:31:00.000-06:00

'Nuff said

love

Cj

Chemo Round Two

2005-11-28T07:55:00.000-06:00

I start the next phase of my treatment today. Very nervous (scared) about the side effects. Oh well.

Love,

Cj

Surgery Day 2

2005-11-27T12:57:00.000-06:00

The room I stayed in was pretty spartan, as most hospital rooms are. It had a TV, and a DVD player, though I didn't watch any movies. I never stayed awake long enough for a movie, though the TV shows help kill time. The nurses checked in on me every 90 minutes, so sleep was in short chunks.

Coming out of surgery, both of my hands were asleep. This had the anesthesiologists all concerned, and eventually a neurologist came in for a consultation. I think that the neuropathy was caused by my arms being outspread during surgery. There's a nerve in the elbow that is easily pinched, causing the neuropathy. Fortunately, this went away by the third day.

I had to get up and walk at least three times a day. This was a production for several reasons. The first was my reluctance to do it. It was painful, and extremely exhausting. The second was all the cables, IVs, etc that had to be detached. I couldn't understand how one day I could be healthy and hale, and the next, an invalid. The first few walks were less than 50 feet, and left me exhausted. I'd return to be and dread the next walk.

I don't remember if I started on Jello on day 2 or day 3. I liked the orange flavored jello, but the raspberry was horrible.

love,

Cj

Surgery Day 1

2005-11-26T09:52:00.000-06:00

Now that I've got a bit more stamina, I wanted to put in writing my surgical experience. Here's the first day.

I woke up at around 4am, partly because of nerves, and partly because of hunger. I had been on a bowel prep where I couldn't eat for about 36 hours. So I was pretty hungry. We arrived at St. Elizabeth's around 5am, and the first thing I noticed was the smell of bacon wafting up from the cafeteria. Torture!

I had gone through pre-admission already, so there wasn't much paperwork to do. Next we were ushered into a room where an RN ran through 100 questions, and generally prepped me for surgery. Things started to happen fast. First they wheeled me into a room to give me an epidural. After that I was rolled into the surgical suite (the cleanest room I've ever seen), and I tried to crack jokes with the nurses and anesthesiologist. I probably came across as extremely nervous, but I wasn't.

In a way, I was really excited about the surgery. Some of it scared me, but I was still excited. Looking back, that was just silly. Between 5-8% of the patients who go through similar procedures don't make it off the table alive. So, I don't think I'd like to go back again.

I woke up in the recovery room, and despite being ready to go, I had to wait til my room was ready. That took about an extra hour, but I was so drugged up, I didn't really notice. I remember talking to Dr. Pitsch, but what he said was quickly absorbed by all the drugs in my system. Why doctors try to tell you stuff when you're under the influence is silly.

Eventually I was taken to my room, and had a short rest before everyone started checking in on me. The room wasn't fancy, but it seemed ok. The nurses all seemed very nice, and helpful. I had an oxygen tube and a foley catheter, plus several IVs, and monitoring leads. There was also a drain tube (ironically named Jackson-Pratt) that drained fluid out of my buttocks. I vaguely noticed my colostomy bag, but didn't really worry about things too much. I was pretty much drugged out. I had three small incisions closed by metal staples, and one monster incision (7" or so) also closed with metal staples. The small ones had been used for the laparascope.

After a few hours of rest, the nurses told me that I needed to get out of bed. As in stand up. The thought was horrifying, even through the veil of all the narcotics coursing through me. Somehow I managed to get my feet over the side of the bed, then two nurses helped me stand. I have never felt such pain. It felt as if someone had stabbed a fistful of knives into my stomach. The nurses let me sit back down, then stand again. I think I fell asleep as soon as I was back in the bed.

Eventually everyone was allowed into the room to visit me, and I had a parade of family and friends come in to wish me well. I don't remember much about that, except that I was very thirsty and just got ice chips to drink after a fashion. I think I slept pretty well that night, despite the periodic intrusions by the nurses.

love,

Cj

Thanksgiving

2005-11-24T10:30:00.000-06:00

This has been a difficult year to say the least, yet I find myself thankful for so much. I have a wife who puts up with me through thick and thin, and two daughters who make me realize that there are more important things than my own wants and desires. I have a sister and brother-inlaw who are as supportive as can be in the midst of their own pain.

I have two sets of parents who love me no matter what I do, who support me in word and deed. Who set an example I always strive to follow, yet never quite attain.

I have brothers and stepbrothers, aunts and uncles, cousins and neighbors who are pulling for me, urging me to keep my chin up even when things seem darkest.

I have friends who listen when I need to talk, and talk when I need to hear a familiar voice.

The last 6 months have changed my family in innumerable ways. The loss of Rachel and my illness have brought us closer than ever, and broken down barriers that had built up over time. The other day I debated with myself whether I would enter into a faustian bargain. If my cancer was the price to pay for bringing my family closer together, would I pay the piper? Would I go through the pain and fear that has haunted me since July? I was never able to come up with an answer. Fortunately, that's a decision I don't have to make. I wish I could go back and do things differently, but I can't. The outcome wouldn't be much different.

love,

Cj

Fear

2005-11-23T16:43:00.000-06:00

Sometimes I'll be trying not to think of anything important, when the thought runs through my mind; what if I go through all of my treatment, only to have the cancer re-occur? This is a devastating thought, and I always try to push it out of my mind as an irrational fear, but it isn't. I'm sure I'm not the only cancer patient to have this fear, but that doesn't matter much to me. I just don't want to be paranoid for the rest of my life.

love,

Cj

A Bit Better

2005-11-23T12:18:00.000-06:00

Well the word from the Doc was to double the dosage, and it seemed to improve things. One of the girls woke up at 12:20am, but I was able to fall back asleep until later when another of my beautiful daughters started crying. So, I didn't get a great night of sleep, but compared to the previous week, it was wonderful. Hopefully tonight we can all sleep through the night.

love

CJ

No Luck So Far

2005-11-22T08:40:00.000-06:00

The new prescription didn't perform any better than the old ones. I fell asleep around 9pm, and woke up at 12:15am. After an hour of tossing and turning in bed, I climbed into the chaise and managed a few hours of sleep. I'll give my doc a call in a bit and see if he has any ideas.

love,

Cj

Another night, another prescription

2005-11-20T18:00:00.000-06:00

Tonight we're trying Amitriptyline as a sleeping pill. It can't do any less than the last two prescriptions. I'll post notes in the morning, hopefully around 10am... ;)

love

Cj

So much for the new sleeping pills

2005-11-19T08:42:00.000-06:00

I woke up right at 12:45am. Slept perhaps another 1/2 hour between 12:45 and 7am. What fun.

love

Cj

Sleep, perchance to dream

2005-11-18T11:02:00.000-06:00

Well, my pain meds are much better, but I'm still not getting quality sleep. Last night is a perfect example. I take my two pain pills, and my sleeping pill at 10pm. I fall asleep in short order then wake feeling fantastic. Refreshed, energized, etc. Then I look at the clock and see that it's only 12:45am. Less than three hours of sleep!

So, I tossed and turned, trying to fall asleep. Around 4am I took another pain pill, but it didn't make much difference. I probably slept another 45minutes total before getting out of bed.

I had been on Restoril (Temazepam), and decided that a change of scenary was called for. My doc switched me to Xanax and hopefully that will help. Interestingly, a lot of the side effects of Restoril are symptoms I have that I had attributed to surgery. It will be interesting to see if they go away when I switch.

I love sleep. I love it more than eating. I have no idea how insomniacs survive. I sure would have trouble.

love

Cj

Chemo in sight

2005-11-17T11:52:00.000-06:00

I start my final chemo series on the 28th of Nov. This will consist of oxalipalatin once every three weeks, and a pill (Xeloda) taken daily for two weeks straight. Then I have a week off before starting back up on oxalipalatin. This will go on for four months, So I should be done by the end of March. It'll be nice not to have an IV pump since I'll be taking Xeloda. After that, my treatment is done!

love,

Cj

Snow Fall

2005-11-15T17:31:00.000-06:00

As I look outside, snow blankets my neighborhood. I've taken my pain pill, so a sense of calm slowly starts to take hold. I've found that my life seems to revolve around my pain medication. My mood, my pain, my sleep, all depend on these pills that only partially deliver on their promise. When the hydrocodone wears off, I waken, both mentally and painfully.

I don't like this phase of life. I'm simply putting in time, with such a small return on all the effort. I walk to exercise my legs, and try to focus on the future. In doing so, I'm ignoring the present. Sometimes it's just to hard to handle the day to day, and I want to curl up in a warm blanket til this is all done. I know this is childish, but for now that's my coping mechanism.

love

Cj

For just 10 minutes

2005-11-14T10:05:00.000-06:00

I'd like to be able to sit down without pain. Just 10 minutes. Drug free, comfortable in a reasonably padded chair. I never appreciated little things in life like this until now.

love

Cj

Stunned

2005-11-12T07:43:00.000-06:00

My employment with Brownstone Research Group was terminated by management on Wednesday. I won't comment much on it other than I didn't expect it considering promises that were made to me when my diagnosis became public. I'm not going to take it lying down.

love

Cj

A Turning point

2005-11-10T13:31:00.000-06:00

With the latest set of painkillers, I've finally been able to get decent amounts of sleep the last few nights. I usually go to bed at 7:30, and I'm asleep by 9pm. Invariably I wake up around 1am, then sleep until Jen wakes up for work at 6am. This has made an unbelievable difference in my energy, my enthusiasm, and overall health.

I still run out of steam easily, though eating properly and doing my mini-walks seems to be helping that. My butt still hurts a lot, and the pain seems impervious to painkillers. But it's getting better every day. I think that time will heal that, if I continue to get enough sleep.

I decided to see how hard driving my car was today. This morning before taking my pain meds, I hopped into the old Jetta and took a spin around the block. It was pretty comfortable. I had to sit on a pillow of course, but it was better than being driven by someone else. I guess I could anticipate the bumps and jostling better as a driver.

Hopefully this is one of those turning points I've experienced through my cancer treatment where it just seems like things are markedly better. That'd be nice.

love

Cj

I get by with a little help from my friends...

2005-11-07T18:04:00.000-06:00

My mom and Bill are leaving tomorrow, heading back to the great Northwest. They've been so helpful with getting me settled back at home, as well as lending emotional support. I don't know what I'm going to do without them. Bill has been my stepfather since I was an annoying junior high kid, and despite my best efforts to drive him crazy, he's always given me all the love and support I could imagine. When I let my cancer discourage me, he was a rock to cling to. I could go on describing how much he's done for me over the years, but words wouldn't do him justice.

Bill, I love you

Cj

exhaustion

2005-11-06T17:25:00.000-06:00

I apologize for not keeping this journal more up to date, but between the chronic pain and my pain meds, I don't have much energy to write for more than a few minutes. I'll write more about surgery/recovery later, but suffice it to say; it's the hardest thing I've ever been through.

love,

Cj

Progress

2005-11-04T11:47:00.000-06:00

Had my staples removed yesterday, so now I'm free of anything that'll trigger the alarms at the airport. Nothing exciting happened at the surgeon's office, and I need to visit him again in a month.

The best thing happened at the oncologist's office. He prescribed an even higher dose of Hydrocodone. I slept pretty well last night, though I did wake a few times. My pain during the day seems much better too with the new dosages. I just took a 1hr nap and feel good though a bit hungover. I've taken two walks today, and I'm going to try and do three a day to build up strength.

I meet with the oncologist in two weeks, and we'll decide then if I'm ready for chemo. I'd like to wait a full month, but we'll see.

It's still hard to concentrate and type, so entries will be short, but I'm doing better. Thanks for all the support everyone continues to give me.

love

Cj

Staple Removers

2005-11-03T08:43:00.000-06:00

Today I meet with the oncologist to plan out the next steps. I can't envision starting chemo very soon. I have no energy, have lost 10 lbs since discharge, and am just starting to get a little sleep. Chemo would wipe me out physically and emotionally.

After the oncologist I meet with the surgeon to have my staples removed. I have no idea if that's going to hurt, but I expect it won't be too bad.

love

Cj

Much better

2005-11-02T09:36:00.000-06:00

I slept much better last night, though I still woke up several times. Each time I fell asleep much faster, and my sleep seemed much deeper. If only the girls had slept as well, I might have slept through the whole night. Sleeping in my bed for the first time in two weeks was wonderful. Amazing what the proper prescription can do...

love,

Cj

Better living through chemistry

2005-11-01T18:27:00.000-06:00

My pain pill travails might be finished. Previously I had been prescribed 5mg of Hydrocodone for pain, and this clearly wasn't doing the job in the night time, or in the day time. Today at my appointment with my radiation oncologist, I was in such pain that I couldn't sit still for more than 1-2 minutes. So obviously the 5mg wasn't strong enough.

I had spoken with the nurse at my surgeon's office the day before (to get a refill of the ineffective 5mg Hydrocodone), and she had called it it. Then this morning I decided that enough was enough and called my GP's office to tell my tale of woe. Eventually they prescribed 7.5mg of Hydrocodone for just before bedtime. Hopefully this will knock me out so I can get a real night of sleep.

The funny thing was when I went to pickup all the meds from the pharmacy, the surgeon's office had only prescribed 2.5mg of Hydrocodone, despite me telling them how ineffective 5mg was. A serious disconnect between me and the surgeon's office is clearly evident. If the 7.5mg dosage gives me a good night's sleep, I'm going to raise heck with the surgeon on Thursday. A simple modification to my dosage would have made the last two weeks much more comfortable, and probably sped up my recovery.

Oh well, enough griping.

love,

Cj

Insomnia

2005-11-01T07:25:00.000-06:00

Something can't be right with my recovery. I'm only getting about 3 hours of sleep per day. I wake up, in mild pain, then can't get back to sleep for hours. The pain pills don't seem to affect me much, at least not as well as I remember them from previous surgeries. Maybe I've built up a tolerance.

Anyways, it's awfully annoying not to get much sleep. This too shall pass, but until then I'm not much fun to be around.

love,

Cj

Reality

2005-10-28T19:50:00.000-05:00

I'm amazed at how kind people can be. People have been so nice to me for the last 4 months, that I've forgotten the little slights, insults, and indignities that people can inflict on others. I truly believe that most people will do the nice/right thing when given enough time to think, but often we let our environment and our moods interfere.

I guess where I'm going with this is that after a wonderful phone call with someone today, I realized how nice everyone was being to me, and it actually made me sad. It made me realize how serious things are. When you're really sick, people walk around on eggshells, afraid to upset you. Realizing this was a bit of reality that had been absent for a week. Whenever I talk to friends and family on the phone I notice that I'm always trying to put up a brave front, so that they don't worry. But deep down I'm still awfully scared. The fact that I'm still on heavy painkillers a week after discharge scares me. The fact that I haven't had a good night's sleep in 2 weeks scares me.

That's a good thing I think, though fear is not always a welcome emotion. Fear can be a powerful motivator, but it can also do a lot of damage. I just have to take each day one at a time.

I'll get better each day, and then one day someone will say something mean and I'll realize I'm completely healed. I can't wait for that day...

love,

Cj

Recovery

2005-10-26T15:28:00.000-05:00

I was going to write about each day in the hospital, but I don't have the energy. Sitting at the computer for more than 5 minutes is really difficult, and I'll just save the essays for another day.

I'm feeling much better, both physically and emotionally. I'm still in constant pain, but the pain meds dull it enough to tolerate. Being at home is 100% better than being stuck in the hospital, and seeing my girls is fantastic medicine.

Anyways, I'm going to go watch Game Four of the WS, and get some sleep. Thank you to everyone who prayed, wrote, called, emailed, or just had me in their thoughts while I was in surgery, and while I recover. It helped...

love,

Cj

Back

2005-10-20T09:06:00.000-05:00

I'm home. Sore, very sore. Tired, very tired.

but home.

love

Cj

He's Coming Home!!!!!

2005-10-18T16:59:00.000-05:00

Tomorrow's the day. The girls and I are so anxious to have him home and I know he's anxious to be here. I'll let Chris fill you in on all the things that went wrong for him today. I will tell you that he got his epidural out and that the rest of him will go 'wireless' tomorrow morning. We should have him back be the middle of the afternoon. Woo Hoo!!!
Love, Jen

Progress

2005-10-17T21:35:00.000-05:00

Chris is making good progress. It doesn't look like he'll be able to come home until Wednesday or Thursday though. He is walking about 4 times a day (which he hates) and is also eating jello and drinking all the water he wants. He tires very quickly and isn't able to get much restful sleep what with the discomfort and incessant interruptions that come with hospital wards. The girls miss their Daddy. Maddie picked a flower for him today on our walk home from school. They are both holding up very well though and have been complete angels the last few days. OK, ALMOST angels. They are my daughters too, after all. ;)
So, we are taking everything day by day and are anxiously waiting the King's return to his castle.

Love, Jen

'NOde' News is Good News

2005-10-14T18:59:00.000-05:00

We got the pathology report back today and the cancer had not spread to any lymph nodes. This is fantastic news and a tremendous relief. Chris has been tired today, but was able to start drinking apple juice. Also, the neuropathy he was experiencing in his hands is almost completely gone. Each day brings another step down the path and another step closer to having him home.

Love, Jen

One Step at a Time

2005-10-14T06:33:00.000-05:00

Just a quick post to let all of you know that Chris is doing very well. He has been up and walking a few times. He even did a lap around the surgical floor. He stills tires easily, but is very talkative when he's awake. Still not sure what day he will go home. I'll post again when I do.
Love,
Jen

It's Out

2005-10-12T16:57:00.000-05:00

Chris wanted me to keep everyone informed through the blog as there are so many people to contact. The tumor is out and the surgery went well. We will not have the results from pathology until Friday. Then we will know if there is any lymph node involvement. Chris is resting now and is in room #631 of St. Elizabeth's. I am not sure yet how long he will be in the hospital, but I know he would appreciate any calls or visits. Also, I want to personally extend a very sincere, yet somehow inadequate, thank you to everyone for their love, support and prayers. I will keep posting as best I can. Please feel free to leave comments or call us.
Love, Jen

Visiting Info

2005-10-11T10:18:00.000-05:00

My surgery starts at 7:30am and will probably take 3-6 hours depending on how it proceeds. St. Elizabeth's doesn't have scheduled visiting hours so you can visit me any time it's convenient. If I need more rest, the nurses will just give you the boot. I know that visiting hospitals is hard for some of you, and I understand that some folks just won't be able to visit. That's cool. I do hope that people visit me. I wouldn't have made it this far without all the support you've given me.

If you do come and visit, simply stop at the main admissions desk and they'll direct you to my room. I think I'm going to be on the 6th floor, but who knows. I'll probably be in the hospital until Sunday barring some miracle.

love,

Cj

Turning Points

2005-10-11T09:12:00.000-05:00

20/20 hindsight is never as accurate as we think. Although our perspective seems perfect, the past is always tinged by our own values and experiences. We also "see" things in the past as we wish to see them. Having said that, I can see three major turning points in my life; moving to Nebraska, marrying Jen, and having children. Now I'm faced with a turning point that isn't by choice, but necessity.

Life isn't going to be the same after tomorrow. There's no turning back, no changing minds, no exploring other options. That's been a hard thing to accept. Commitment has always seemed like something we decide upon, that we agree to (however reluctantly). Yet commitment really means that there's no turning back.

I've held on to this notion that I have a choice in things now, when I'm really just along for the ride. I tried to gain some sense of control by understanding what was happening and why, but that doesn't correspond to control. It's like a physicist stepping onto a modern rollercoaster. He may understand all the interactions between gravity and momentum, friction and acceleration, but once he's strapped in, he's just along for the ride.

Trying to keep things abstract has been another coping mechanism for me. This blog has been a key part of that. If I put things down as words, they lose their power over me. It's worked pretty well until the last few days. Reality has a subtle way of intruding into our lives.

I'm in good hands. I'm blessed with a tremendously supportive family, a loving wife, two kids who adore me. I'm going to be at an excellent hospital with a talented surgeon wielding the scalpel. I have a church that has brought my faith back to life, and friends that prop me up when I stumble. I don't think it's using 20/20 hindsight to say that I'm a very lucky man...

love,

Cj

Almost There...

2005-10-09T19:45:00.000-05:00

Well, I start a lot of pre-op stuff tomorrow, meeting with the anesthesiologist, ostomy nurse, and I'll get pre-admitted. Then I'm restricted from eating anything from 5pm on, so I'll probably pack a big lunch.

love

Cj

Peek A Boo

2005-10-05T08:51:00.000-05:00

Three Part Act

2005-10-05T08:17:00.000-05:00

It's not unusual for the best stories/plays/movies to consist of three parts. It creates a natural dramatic tension that helps propel the story along to its conclusion. I guess I'm about to start Act 2 next week, and we'll see if it ends in a cliffhanger. It's strange knowing that my life will irrevocably change next week, although it's changed a lot in the three months. In a way I'm eager. That sounds strange when I consider the details of my surgery, details that I'm not all that enthusiastic about. But eager nonetheless.

love,

Cj

D-Day

2005-09-26T15:30:00.000-05:00

Had a good meeting with my surgeon today. Surgery is scheduled for Oct. 12th at St. Elizabeth's. Dr. Pitsch said that he'll attempt to avoid a colostomy if at all possible. I didn't get a strong feeling about it, but he may be the type who under-promises and over-delivers. If he's successful I'll have a temporary ileostomy for a couple of months.

He said that depending on my recovery, I can expect to stay in the hospital for 4-10 days. At least I'll have a private room, so I don't have to put up with someone snoring.

I guess I'm disappointed for a couple of reasons. I had originally thought surgery was going to be on either the 5th or 6th, so it's another week of waiting. I'm also disappointed that there are so many things up in the air concerning the surgery. I've felt so good (physically and emotionally) the last few days that today was a bit of cold hard reality slapping me in the face. What can you do?

love,

Cj

Tuckered out at church

2005-09-18T13:36:00.000-05:00

Emily is used to napping during the morning, so she decided that church was a great place for it.

Maddie loves the outdoors

2005-09-17T13:57:00.000-05:00

Maddie and I went for a walk yesterday evening. She really enjoys the outdoors. Hopefully she won't get cabin fever during the winter.

love,

Cj

Maddie having fun at the Children's Museum

2005-09-17T13:46:00.000-05:00

We braved the crowds (Cornhusker fans on their way to the game) to spend some time at the Children's Museum. Maddie had a blast as usual...

love

CJ

On the mend

2005-09-10T10:37:00.000-05:00

I'm feeling much better lately. I still have a lot of fatigue that is slowly going away, but almost all the other side effects have dissipated. Now I just need to get ready for surgery. I meet with the surgeon on the 26th, and I'm a bit impatient. Oh well.

love

Cj

Up next, surgery.

2005-09-02T13:43:00.000-05:00

I had my last pre-surgical meeting with my oncologist this morning. He (and I agreed) that both the chemo and radiation treatment was less deletorious than most would have expected. Most of that he attributed to my youth and health (ironically), and a bit to luck. Compared to side effects that others have experienced, I would rate my treatment as a 5 out of 10. Now, 5 out of 10 still sucks. Nothing in my life has compared to this so far. But, compared to others less fortunate than I, I think I got off relatively easy. He said that if my remaining symptoms were going to dissipate (more on that in a minute) they would do so over the next 6 weeks. I still have a lot of fatigue, but not as bad as last week. My appetite is still horrible, but I'm not losing any weight.

Some folks going through chemo battle side effects for quite a long time. Fatigue seems to be the most persistent of all side effects, sometimes lasting years. I can't see that happening to me. One, I've noticed a marked improvement in just a week. Two, I can't afford the level of fatigue that I felt in prior weeks. My two girls need an active dad, not somebody permanently ensconced in a recliner. I don't know how the final rounds of chemo will affect me, but I expect to have a full recovery from their side effects.

Dr Greene was pretty optimistic that I wouldn't need a colostomy. Dr. Barrios (my radiation oncologist) was likewise optimistic. The entire idea of pre-surgical treatment is to decrease the chance of a colostomy. I'm not quite as optimistic, though I am hopeful. My surgeon had made it sound like a fait-accompli, and he's the one who will be calling the shots. I guess I won't know until I wake up after surgery. I guess that I'm engaging in a bit of vanity, but I'd like to avoid a colostomy if at all possible without increasing my chances of further cancer. But, I've resigned myself to having one. Just not feeling lucky about it.

love

Cj

The common cold sucks

2005-09-01T16:23:00.000-05:00

Everyone in our house (except for Emily) has a cold. Maddie was first, then Jen, now me. Amazing how irritating a cold can be. Oh well.

love

Cj

Treatment Finale

2005-08-29T14:26:00.000-05:00

I had my last radiation treatment this morning, and I'm glad to be done. The folks at the radiation center are great, but I can't wait for the side effects to wear off. Since I stopped chemo on Friday, everything should be back to normal in 4-6 weeks. Just in time for surgery!

Surgery is starting to scare me, simply because it's a series of unknowns. How well has the tumor reacted to the pre-surgical treatment? Will I need a permanent colostomy? How painful will the recovery be? Will the nurses be cute? Will I care?

I had a bit of a fever on Saturday, after hanging out with one of the guys I've known the longest in NE. Rich (and Erin) is a wonderful guy, and I consider myself lucky to have met him and been befriended by him. I hadn't seen Rich since his daughter was born over a year ago, though email helped keep in touch a bit. I felt bad for not getting together more often, but we both had new kids in the house, and it's too easy to let time slip by.

Driving home, the fever started to give me chills, and I started to panic about coming down with some type of infection. I kicked myself for having gone up to play poker with Rich, but then realized that what happens happens. I can't become a hermit just on the off chance that I might get sick or tired. Seeing friends is very therapeutic.

The fever never got past 100.4, and Tylenol managed to knock it down over the next 12 hours. It gave me a real scare, and made me appreciate being healthy. Folks with chronic illnesses get used to not feeling well, and just suck it up. Rich is one of those guys. He's had diabetes forever, and I've never heard him complain once. Never. I can't imagine how many times he's had to test his levels, or give himself a shot. Even now with his pump, life as a diabetic can't be much fun, yet he manages to enjoy life more than anyone I know.

I said in one of my earlier entries that life is really about what you do, not who you are inside. I think I need to amend that a bit. I think life is really about what you do with the friends you make.

love

Cj

Stupid Spam

2005-08-26T17:12:00.000-05:00

I recently started getting a lot of "comments" that are no more than spam. They're automated, and are starting to irritate me. I will clean them up as they appear, but if you see a lot of comments advertising viagra or such stuff, it's not a real person posting the comment.

Ding dong, the pump is gone

2005-08-26T14:58:00.000-05:00

I had expected to have my chemo continue over the weekend to coincide with the last radiation treatment on Monday. When I met with the PA at the clinic, she said that it would be silly to keep it for just 3 days. So, they took the infernal thing out today. I feel almost normal without it hanging around.

Monday is the last day of radiation treatment, and the last day I'll meet with the radiation oncologist. Dr. Barrios has been a wonderful doctor, very patient and understanding. The staff at the clinic has been wonderful as well. I won't miss the treatments, but I will miss the people who have been working hard with me to fight this cancer.

The folks at the chemo clinic are nice too, but I haven't seen much of my doctor, just the PA's. They and the nurses are wonderful. I guess I don't understand why I see my radiation oncologist on a weekly basis, but not the main oncologist. I've only seen Dr. Green once, when we first started treatment.

love

Cj

How you can help

2005-08-26T12:58:00.000-05:00

Whenever someone learns about my cancer, the question invariably arises; How can I help? Fortunately, the answer is simple. Call me or Jen, or email when you have a chance. The power of a phone call or email note is amazing. Just hearing a friend's voice, or reading a good email lifts our spirits immensely.

I'm also fortunate financially. I'm on Jen's insurance policy, and my total out of pocket can't exceed $2K (for 2005 at least). I also have a wonderful employer who has been more than generous. I don't know how people without some type of health insurance cope financially with cancer. If I was uninsured, I'd already have rung up over $50K in bills, and surgery/post-op chemo will make that look like a bargain. I'm a pretty staunch conservative, and opposed to nationalized health care, but I wonder whether there isn't some middle ground that helps low income/uninsured people cope with serious illnesses.

If you wish to make a financial contribution, visit www.cancer.org. Cancer research can always use more funds.

love

Cj

What ifs

2005-08-25T08:45:00.000-05:00

It's an easy game to play when you're diagnosed with cancer. What if I had eaten better, exercised more, drank herbal tea daily or some other tactic. Easy and natural, but not very productive.

A little over two years ago I met with my GP about some bleeding that we decided must be a internal hemorrhoid. The bleeding wasn't very serious, and I didn't have any follow up work (fecal occult blood test, or colonoscopy) done. The bleeding persisted on and off for the following two years, but never very seriously.

With 20/20 hindsight, it's easy to see that a colonoscopy would have been the wise thing to do. Odds are it would have found a precancerous polyp, and I wouldn't be in the pickle I'm in today. Yet that assumes so much. What if the tumor is relatively new, and/or didn't develop from a polyp? What if I had a colonoscopy in 2003, and been given a clean bill of health? Oncology is such an inexact science from what I've read, and it's often easy to mix correlation with causation.

I worked in the fast food industry for over 16 years, and to say my eating habits are poor would be an understatement. Yet I don't know if my diet contributed to the onset of my cancer. Studies linking diet to colo-rectal cancer are generally inconclusive. Yet it's easy for me to point a finger at my diet, or my change in exercise, or a myriad number of potential cancer triggers. That's why I'm refraining from making grandiose vows to change my lifestyle in the coming years.

I think that my lifestyle will change, whether I make conscious efforts to do so. And these changes are going to occur whether I like them or not. I may not necessarily embrace them, but I will have to live with them. The only change I plan to make (and I think I've already made it) is to do a better job of fostering my friendships and bonds with those I love. I doubt that I'll turn into a Nebraskan version of Mother Teresa, but I can't really go back to being who I was before 7/7...

love

Cj

Ballpark date for surgery

2005-08-24T13:40:00.000-05:00

Just got off the phone with the surgeon's office. I meet with Dr. Pitsch on Sept. 26th, and can plan on having surgery roughly the 5th or 6th of October. Wee! Six weeks to party like it's 1999. Wait, wrong song, wrong century.

love,

Cj

SSDD

2005-08-24T09:10:00.000-05:00

It's getting harder to post on even close to a daily basis. Between fatigue and nothing really interesting to write, I doubt I'll be able to do daily postings. Think of it like this, no news is good news.

I have only 4 more radiation treatments, and when those are done, my chemo stops as well. I can't wait.

Our household is suffering from a complete lack of sleep. Madeline has been having night terrors the last two nights, and Emily has been waking up at 2am as well. She won't fall back asleep unless we hold her, and she can take an hour or so to conk out. We've been making some mistakes in her sleep cycle (letting her fall asleep in our arms) that probably make it hard for her to go to sleep when she wakes up in the middle of the night.

Maddie's night terrors are much more troublesome. She screams so loudly that it usually wakes Emily up. Last night Maddie woke up about every 45 minutes. I ended up sleeping in her room, trying to give her some comfort. So I got about 1hr of sleep. Jen took care of Emily, and probably got less sleep than I did before she had to head to work. Hopefully we can get this squared away in a week or so, otherwise we'll both be out of gas.

It'll be nice when we know when my surgery is scheduled. I've been so fortunate with side effects, and I hope my luck holds out with surgery and post surgical chemo. I read a lot of people's blogs about their cancer experiences, and they seem to have so many problems with chemo that I've managed to avoid. So even though I feel miserable at times, I always remind myself it could be worse.

I just read that Lance Armstrong has been accused (again) of doping in the 1999 Tour de France. I doubt the veracity of the charge, but I have another thought. Who gives a rat's ass? If he did dope, it's still a superhuman achievement. His cancer was so pervasive and damaging that it's amazing that he ever rode again, much less won the Tour. I'd love to see any of his 1999 challengers go through his chemo regimen, and then ride the Tour. Again, I doubt that he doped. I think this is just further jealousy being expressed and 6 years is a little late to be making charges that Lance is unable to refute other than by his words.

love

Cj

Keeping things straight

2005-08-20T13:53:00.000-05:00

One challenge with going through treatment with 3 different doctors is keeping everything straight. I was far off on what I expected in terms of schedule. Here's the latest:

6 more days of radiation treatment and chemo, ending on the 29th of August. Then approximately 2 weeks of recovery before I meet with the surgeon to discuss and schedule the surgery. That meeting would be around Sept. 12, and surgery could be anytime after that depending on his schedule. Then after surgery I'll have 4 more months of chemo. I think there will be time off after surgery for me to recovery before chemo starts. Surgery is not something I'm looking forward to, but I just want to get this stuff done. I'm putting off too much stuff until "after."

The good thing is that I can get rid of my chemo pump much sooner. Although I've been very fortunate about side effects from both rad and chemo treatment, I hate this pump. Hate it. It's better than some options, but it's like a ball and chain. Oh well.

My CBC results are very good, up again from last week. Particularly my white blood cell count, which has risen again. That's the one that gets monitored closely since it's so important for my bodies self defence against infection etc. So that's a good thing. I've lost a couple pounds since the previous Friday, but they don't seem concerned about 1-2lb/week. It's just when it's in the 5-6lbs that they worry.

Maddie's god-parents stopped in last night, and it was a joy to have them visit. Maddie had fun showing off for Rachel and Chad, as well as being able to stay up past her bedtime! My daughter's no dope... ;)

love,

Cj

Radiation is almost done

2005-08-17T13:57:00.000-05:00

It looks like next Wednesday will be the last day of radiation treatment, barring a change of mind on the part of the radiation oncologist. That means only five more zaps, then I just have to finish chemo. They'll probably do either a CT scan or a colonoscopy after chemo so that the surgeon has an idea of how much the tumor has shrunk.

love,

Cj

Cycles

2005-08-15T17:03:00.000-05:00

One of the things I've learned the last couple of days is that we don't always deal with things completely. We really only deal with as much is required to get it off our minds. We move on to other issues and think we've resolved things. And then, things have a nasty way of sneaking up on you again.

When I was first diagnosed, one of the strongest feelings I had was one of mortality. I was afraid of leaving my family alone, and angry that this was happening. I thought I had worked through those feelings the first week or so, and all the good news from ultrasounds, CT scans etc. reinforced the idea that I was going to be okay. So I was able to put those fears away and move on to more pragmatic stuff about my treatment regimen etc.

Ha! Last week my fears came back with a vengeance, angry at being suppressed for so long. I realized that despite the rosy news from my labs etc., that I was by no means in the clear. Good people, with far better prognosis than I succumb to cancer on a regular basis. I don't think this cancer will get the best of me, but someday I'll succumb to something. Someday I'll shuffle off this mortal coil. And I think that's where my anger comes in.

I miss the naivete and innocence of being able to consider my mortality as a far off thing. The first time I had melanoma, I was young, and didn't realize how close I had come to being a statistic on some dermatology study. But now, even after I recover, I'll always wonder if something is going to strike me down. And this is where the effect of Rachel's murder has been compounded. I can't look at my daughters without wondering if something will happen to them in my lifetime. And if I were to pass away in a year or two I wonder if they would remember me. These are thoughts no one should have to bear, and sometimes I'm just not strong enough to recognize them as fear, plain and simple.

They say that when confronted with a threat, people have two responses: fight or flight. For me, neither is the best. Both trigger a cascade of chemicals in your body to prepare you for either action. These chemicals add stress, and can be counterproductive. Yet I wonder if our mental health has the same defense mechanism? We flee from thoughts too grievous to bear, and we fight ideas that challenge our way of thinking. Yet how do we accept what can't be accepted?

I don't believe in mortal sin in the Roman Catholic sense. I think that we're all sinful, and God's grace can forgive each and every one of us if we only ask. So I won't let myself dwell in despair over things that are in His hands. Despair is easy to accept, but so damaging to the soul. I just have to accept His grace, and try and find the beauty in however many days I'm given.

love,

Cj

Good Labs

2005-08-12T13:25:00.000-05:00

Got back from my treatment today, and my bloodwork has improved a lot. I don't have figures from before my treatment started, but there's been a steady improvement in my white blood cell count. It had dipped down to 3100 (anything below 4000 is bad), but last week rose to 3700 and this week is at 4300. So that's a good sign that my body is adjusting to chemo. If it had dropped steadily, they probably would have taken me off chemo for a while, and that would have delayed surgery. So that's a good thing.

love,

Cj