3 more days

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

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

Step by Step

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

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

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