Advances

Working in the technology industry definitely skews your vision. I'm used to computers improving on what seems like a daily basis, and naturally assumed medicine was experiencing similar advances. When a great deal of your life revolves around technology, it's easy to draw erroneous conclusions.

In reading about Lance Armstrong's cancer treatment, I had this notion that since he was treated with cancer in 1994, that eleven years worth of advances would have made today's treatment much more effective. Hah. If you were stricken with testicular cancer, you'd most likely be given the exact same treatment Lance underwent.

Then, when I was looking up side effects of my main chemo drug 5FU, I read that it was over 40 years old. That means the year I was born, some medical researcher was concocting the brew pumped daily into my veins. Hard to imagine that something better couldn't have been developed in those four decades.

The real advances have been in detection and in drugs that help you cope with chemo (and radiation) side effects. Chemo isn't the cure for most cancers, surgery is. Chemo helps increase the success rate of the surgical procedures, but can't currently cure cancer.

I remember growing up thinking that we'd all have flying cars by now, colonies on Mars, and cures for all our ills. That seems so long ago...

love,

Cj

Is this really happening?

Each time I visit the radiation center, or the infusion center upstairs, I'm struck by the appearance of so many of the patients undergoing treatment. Most are elderly, and few look healthy. I know that's a silly thing to say about someone with cancer, but each time I go, I see someone who makes me ask myself if this is really happening to me? Will I become like they are? Or is it just that cancer is more likely to afflict the elderly in our society?

I used to get upset seeing children with cancer on TV. It struck me as so unfair that someone so vulnerable could be stricken with such a wicked illness. I guess I never gave much thought to how hard it must be for the elderly to take. Kids are amazingly resilient, whereas elderly people often lack the stamina that youth provides. I guess I'm fortunate to be going through this at my age where I feel strong, and don't feel like my body is really failing me.

Part of me doesn't want the people I love to see the infusion center, for fear of their fear. But then I see the family members who come to lend support to the patients, and realize that there may be times that I need their support. That there will be times that I'm not as strong as I once was, that I need a hand to hold or a kind smile. I'm not good at accepting help, much less seeking it out, so it will be an interesting journey. Fortunately, my wife often has a better understanding of what I need than I do.

love,

Cj

A much better morning

I slept much better last night, and the fever is gone completely. I'm beginning to think that it might have been a bug that took advantage of a slightly weakened immune system. It's so easy to seek clues and connections with everything that is occurring, and I need to be careful of that. Sometimes a cigar is just a cigar.

It finally cooled off quite a bit today. Instead of the low 100's, it should stay around 65-70 with the storm that is passing through the area. The heat was getting a bit old, and I always like rain.

Emily is taking steps with great enthusiasm, though she steadfastly refuses to do so in my presence. She's getting two teeth, and that's probably why she's been a bit more cranky than usual. Maddie continues to adjust well to preschool, though I miss being able to see her at will. She's been having a hard time sleeping through the night, and I think she might be sensing a lot of the stress in the air. Her routine has changed a lot over the last week, so that may be contributing as well.

love,

Cj

I hate Mondays

Well, the honeymoon with my chemo is over. Last night I began throwing up around 3pm, and diarrhea quickly joined in. Fortunately the vomiting stopped but the diarrhea has persisted until now. I'll try some Immodium AD and see if that helps. To top it off, I'm running a fever now. Hopefully Tylenol will knock it down.

The doctor is a bit concerned about the fever, and if it persists in the morning I'll have to go in and see him. It might be a lowered white blood cell count, or it could just be the flu. Either way, it's not a good thing to have when going through treatment.

I do have to hand it to the folks at the oncology center. They are unfailingly nice, and very considerate of the patients in their care.

So I'm really enjoying these side effects. Depending on how much energy I have, I may miss a day or two in my blog.

love,

Cj

Not with a bang, but a whimper

Well I started chemo yesterday, and the first results are mixed. I felt nausea within about two hours, but I have a prescription that seems to be working quite well. Having a pump attached to me 24/7 isn't very much fun though. It's bulky, with IV tubing that can't be allowed to kink, and generally it's a pain. I suppose I'll get used to it, but I'll probably complain about it for a while. It just makes the simplest tasks awkward, and I worry that I'll screw it up while sleeping.

I hope this treatment system (24/7 dosage) is easier on me than having one massive chemo infusion, then a week or two of recovery. My appetite seems a bit off, but it's been that way for a week or two. I wouldn't mind losing some weight, but I don't want to end up looking like a refugee either.

Other than that I've no side effects from either the chemo or radiation treatment. Hopefully that will be the case for the next 3 months. I doubt it, but for me, hope usually trumps doubt.

love,

Cj

p.s. The weather here is horrible. 104 yesterday with a pretty high humidity. Even if I was in perfect health that's hot enough to make me uncomfortable. How about something in the 70's heh?

Anticlimactic

I started my radiation treatment yesterday, and although it was a bit tedious with all of the alignment/positioning stuff, it doesn't seem like it will be a big deal. It should only take 15-20 minutes, 5 days a week for 25 treatments. The side effects won't be fun, but at least the treatment itself won't be painful or uncomfortable. The only pain I felt was when they tatooed the alignment points on my posterior for posterity! The technician said that I shouldn't feel any side effects for at least a week, and more likely 2 weeks.

They zap me with a linear accelerator that looks like it belongs on the set of a sci-fi movie. The technician said it cost over $2 million, and the clinic is brand new. I've only seen one other patient in the clinic so far, which is such a contrast to the chemo clinic which is always packed and hectic.

Today I continue the rad treatment, and I'll also start my chemo. I'll get a fanny pack pump that will dispense 5FU 24/7 through my portacath. Coping with having something strapped to me for three months doesn't sound like fun, but I'm hopeful that this methodology won't be as hard to cope with as the older style of treatments.

I'd like to wish a belated birthday to Lisa (Wednesday was the big day). I simply forgot!

love,

Cj

No Trial For Me

Well, I'm out of the clinical trial. My health insurance company doesn't cover Phase 1-3 clinical trials. I could appeal this, but the amount of time and paperwork involved would push my treatment too far back. So, I'll just be using the standard 5FU/Leucovorin chemo plus radiation treatment for my neo-adjuvant therapy.

I wish I had known about this earlier, and I have no one to blame but myself. I didn't get around to reading my policy until yesterday, blindly assuming that it would be covered. I guess I'm just impatient to start treatment.

On that note, I start radiation treatment today. I have to admit that I'm scared of the procedure, mostly because of the side effects. I've tried to keep my fear of all the procedures in check, but sometimes it really hits me that this isn't a cold, or a cavity that needs to be filled (no pun intended).

I'm still buoyed by my ultrasound. The fact that we still don't see any signs of nodes or mets is wonderful.

love,

Cj

The joys of an ultrasound

As part of the clinical trial I'm participating in, I had to have a rectal ultrasound to determine the extent of the tumor. It was as much fun as you can imagine. Anyone who knows me well knows how uncomfortable I am talking about any bodily function (see? I even refer to stuff as "bodily functions"). It's amazing how quickly you shed any pretense to dignity or pride when going through cancer. It just doesn't seem to matter much anymore.

The good news is that the scan didn't show any signs of nodal involvement, nor any evidence that the tumor had spread to my prostate gland. This is huge in terms of successful treatment. According to the doctor who performed the ultrasound, the tumor should be classified UT3. The U means ultrasound, the T3 means tumor stage 3. This means that it's almost completely penetrated my rectum. (See? I can use that word in public now.) However, the fact that no nodes appear to be cancerous, and that the CT scan showed no obvious signs of metastasis are very encouraging.

Hearing news like that is a heck of a payoff for 10 minutes of discomfort...

On an important side note, the surgeon said that he now recommends a colonscopy for anyone (regardless of age) who has had blood in their stool. The conventional wisdom used to hold that people over 50 were at the highest risk for colo-rectal cancer, but that's no longer accurate. In his clinic, Dr. Shashidharan said he's seen one patient with colon cancer who was 16, and another who was 24. So please, please, if you have any idea that you could be at risk due to either symptoms or family history, insist upon a colonoscopy. If I had had one two or three years ago, I might have caught this before it turned from a polyp into cancer. For more fun reading about colo-rectal cancer, go here.

love,

Cj

Illusions

Two months ago I was under several illusions. I believed that I was in good physical health (albeit a bit out of shape), good spiritual health, and good emotional health. I also believed that I was in charge of what was occurring in my life, that I was in control. The worst illusion I held was that I didn't need anyone.

These illusions weren't ironclad. The murder of my niece had shaken some of my beliefs to their core. Yet like I suspect many do in similar circumstances, I put the pain, anger and confusion into a little box I labeled "Denial" and tried to go on with my life as before. Every now and then I would open up this box, and see if I still got a jolt of pain. Of course I did, so I carefully put the lid back on, and vowed not to open the box ever again. When I would see or hear of a family member who was having trouble grieving, my commitment to keeping this box secure grew stronger. I missed my niece, I missed her smile, her laugh, her humor, and her optimism. The pain my family was going through seemed unbelievable. But I thought that I was doing more good by being strong, helping everyone else, and I didn't really know how to deal with the miasma of emotions.

When I received the pathology report from my colonoscopy, I was horrified. Horrified that my body had somehow betrayed me, that I could die and leave my wife and children alone, and that my life had been a waste. And a waste it was. In the two weeks since my diagnosis, I realized that I had accomplished little of value in my 41 years. That's a hard pill to swallow. I hadn't built any enduring friendships, nor helped anyone except myself in any significant way. It's very humbling to realize that you really aren't the center of the universe.

I had avoided attachments because I was afraid that I would get hurt. That friendships would end badly in disappointment or acrimony. I held my friends and family at arms length, simultaneously wanting yet fearing the love that only they can offer. My first marriage was an act of desperation, of selfishness that only perpetuated my self-centeredness.

I held onto these illusions because it was easy and convenient. It's awfully hard to change how you view the world, and I think our tendency as people is to hold onto some structured view of life. Change happens though. I had a chance to change when I met Jen, and when we had our two children. I always said that I while I was good at this or that, I was really good at being a father. And change I did. Kids will do that to you, as will a wonderful wife.

Yet I held onto this silly notion that my kids and my wife were the exception. That I had to stay in control, that I could stay in control. My diagnosis demolished any chance of retaining that illusion. It made me revisit that box with Rachel's name on it, and weep for my lost niece. It made me realize that I really wasn't in control, that control was just an illusion to keep me sane. That release was good for the soul, that to deny our feelings and fears was the most unhealthy of acts.

And then a wonderful thing happened. When I felt the lowest, the loneliest, in sheer utter fear and panic, I began to receive calls and emails, cards and letters from family, friends, neighbors and coworkers who had heard I have cancer. Friends from high school whom I haven't heard from in 23 years sent emails wishing me well. Family members who I had lost touch with, or had never even met sent me notes of support and encouragement.

It's hard to describe how that makes you feel when you're going through cancer. I'll be honest and say that it doesn't magically alleviate your fears, nor make your treatments less uncomfortable. But it does make you realize that despite forty one years of looking out for Number One, people do love and care for you. I'd think I'd rather hold onto that then the illusions that got me this far.

love,

Cj

Tests, tests, and more tests

I'm fortunate to participate in a clinical trial comparing 5FU with Xeloda. 5FU is an intravenous chemo drug, and Xeloda is a pill based version of 5FU. Depending on where I get put in the trial, I'll take one of the two. 5FU will be delivered via a pump I wear 24/7, and Xeloda is given twice daily. I naturally would prefer Xeloda, even with my portacath.

Participating in the trial means I have to have more tests to spot any differences in the effectiveness of each protocol. This is good in some ways since it means less chance of something slipping by, but it's also a pain. I have to go to Omaha for an ultrasound, and then another series of xrays on Thursday. This is just so that the trial can get an accurate image of me before any treatment.

Xeloda has many of the same components of 5FU, but one interesting twist. It doesn't turn into 5FU unless a tumor cell activates it. This means that it's much more targeted, and less damaging (at least that's my hope). With either protocol, I'm curious how it will affect me. Instead of monster doses, the continuous dosage seems like it should be easier on me. Or perhaps I'm just being optimistic. After surgery I'll get the hammer...

Spaghetti Night

My mom cooked spaghetti dinner for us tonight, and it was wonderful to put aside all thoughts of my upcoming treatment for a moment, albeit brief. I was caught up in the struggle to keep our house from turning into a crisis center with my 3 year old who is as energetic as one could hope, yet as independent and rebellious as a father could fear.

It's not often that we realize how fortunate we are. We complain about this, or snicker about that, all the while missing out on the joy and happiness that is within our reach. I can say that until the last 60 days, my family has been fortunate, even blessed compared to so many. In the past I was always quick to blame my personal flaws on either my upbringing or the environment of my youth. For someone who always recited the mantra of personal responsibility, I was often the first to avoid it. Facing your own flaws and shortcomings is never easy, especially for someone who never had been held accountable.

I guess that I've grown up some in the last 7 years. I've had a failed business, a failed marriage, behaved like a spoiled kid, yet somehow found love and happiness when I needed it most. I have to credit a wife who has stood by me at my worst, two kids that bring tears to my eyes just thinking of them, and a sister who has taught me what it means to be a sibling as well as a friend.

Perhaps if I had just taken the time to look around at something other than myself, I would have realized it was always there...

love,

Cj

Still a big struggle ahead

Amidst all of my euphoria over yesterday's results, I still need to bear in mind that this isn't going to be easy. Chemo is going to be hard hard hard, as will the side effects from radiation therapy. Surgery isn't going to be a picnic either, nor adjuvent (post surgery) chemo. BUT, it's a good day, and I'm going to savor it a bit.

Today I meet with the radiation experts to chart out my treatment. I think the game plan is for me to start on Monday, 5 days a week for 6 weeks. The treatment itself should be relatively painless, but who knows with the side effects. A lot of the stuff I've been reading both in books and online boil down to two words, "it depends." Each person seems to react to chemo and radiation treatment in a unique way. Some people can't stand spicy foods, others have lost a bit of their sense of taste, so they eat tons of spices. Others have problems with nausea etc, while a different group doesn't.

So, I'll just have to see how it affects me. They have a wealth of drugs to treat the side effects, so I'm optimistic that I won't feel the cure is worse than the cancer.

love,

Cj

A relief of sorts

Today's meeting with the oncologist went far better than I could have hoped for. I have an adenocarcinoma, about 5cm in size. According to the CT scan, there doesn't appear to be any metastasis. We won't know if the cancer has spread to the lymph nodes until surgery in 3 months. I start radiation treatment on Monday, and either 5FU or Xeloda for the chemo treatment. Xeloda is in pill form, taken twice a day, while 5FU is infused 24/7 via a fannypack pump. If I get 5FU, I'll need to go in once a week to refill the pack. The oncologist seems sharp, and has a good bedside manner.

I'm not out of the woods by any stretch of the imagination, but the sense of relief is overpowering. Chemo's going to suck, as will rad therapy and surgery. But I can beat this thing. It's just a bunch of friggin stupid cells. Now I'm going to go take some pain pills and get a nap.

love,

Cj

The Big Day

Well, we'll be meeting with the oncologist today to discuss my cancer treatment. Yesterday was the toughest day so far emotionally, and I'm not surprised at all. I just ran out of energy after staying focused for a week. I figure 7 out of 8 days is pretty good average. Heck major leaguers get into the Hall of Fame failing 70% of the time!

Anyways, I'm not either optimistic or pessimistic about the upcoming prognosis. If it's good, I don't want to approach my treatment any different than if it is a unfavorable diagnosis. Either way, I'm going to beat this thing.

love,

Cj

The current me...

I've realized a lot of you who know me from the Dark Ages haven't seen a picture of me in a long time. So, here's one from about a year ago. It's me and my daughter Maddie at the Omaha zoo. Not quite the 6'2" 145lb guy I was in High School...

Posting a comment

This blog can be a bit confusing. If you want to post a comment (please do!), don't click on the envelope icon next to the word comment. Click the word "comment" itself. This will take you to a page where you can post a comment that will stay on the website. If you click on the envelope icon, you send me an email with your comment. Either way works, but if you want others to so your words, you'll need to use the comment system.

love,

Cj

What I've Got

In talking to a lot of my friends who visit this site, I realized that I've never come out and said exactly the type of cancer I have. It's rectal cancer, and feel free to make as many jokes about it as you want. I sure do. Sometimes it's a real pain in the ass... ;)

Initially I didn't want to put that I had cancer on the site, until I had spoken with my Mom (sorry Mom). Just didn't want her to find out that way, and wasn't sure if she ever checked this site. Then, it felt awkward to call it rectal cancer, like I had done something wrong, or that I should be embarressed. I kept calling it Colo-Rectal cancer, like that extra word made a difference. It's still cancer, I'm still sick, and this is all just semantics.

I'm looking forward to a lot of things with this experience, especially the chance to lose weight. It's ironic that I had to get cancer to become serious about weight loss, but what can you do? As the funniest man I know suggested when I asked for T-shirt ideas,

"Chemo: When You Absolutely, Positively Hafta Lose Weight"

and for all my friends who NEED TO GET THEIR ASSES checked via colonoscopy:

Colonoscopy: Why Sacrifice Another Gerbil? (or...)
Save A Gerbil: Get A Colonoscopy

I used to be a Mac zealot/advocate. I always irritated everyone by saying "You wouldn't have all these problems if you used a Mac." Well, now I'm a colonoscopy zealot. If you think you need one, get one. If you don't think you need one, get one anyways. If I haven't given you my lecture, just wait. I'll get around to you eventually. You'll learn far more about the colon then you've ever wanted to know. I'll even talk about it at meals, bar mitzvahs, weddings and church services. So, if you want to skip the lecture, GO GET A COLONOSCOPY.

love,

Cj

Emily

I realized a lot of you may not have seen pictures of Emily yet, so here's one of her exploring her Great-Grandfather's chair.

Emily's first steps!

Emily just took her first real steps! Three real steps towards Jen! Amazing how fast she's growing up.

Love,

Cj

Hmm, another delay

Turns out my oncologist can't see me until Thursday, so another day of waiting. Oh well...

The Waiting Game

Today's a tweener day between lab work and my oncology consultation. Tomorrow I'll find out the results of my xrays and CT scan. I could probably call around for results today, but I'm not going to for two reasons. One, I can't really do much with the info. The oncologist will put everything into context, and explain my treatment. Knowing bits and pieces of info from the labs really won't be very useful. The second reason is that I'm scared. If the results are less than spectacular, I don't want to find out about them without being able to ask the oncologist what they mean. It would be easy to let something distract me from my goal of beating this thing.

i'm sure that I'll need to get used to fighting this thing at a different pace than I'd like. If I had my preference, I'd already have surgery done, and be onto chemo. I hate the idea of letting this thing live a single extra day before attacking it. But I'm an amateur at this; the doctors are the professionals who have been through this time after time. As long as they're as committed to killing this thing, I'm on board 100%. But if I get any sense of negativity or complacence, I'm going to kick some butt.

Love,

Cj

Time for a CAT scan

I head off in about 5 minutes for my CT scan. The barium compound wasn't that bad, though I drank some of it too soon. Oh well. Here's to a clean scan!

Two Great Books

Lance Armstrong's story is one that is awe-inspiring. We take for granted his excellence, yet before he even won one Tour de France, he nearly died from cancer. His recovery in the face extreme adversity makes my cancer look tame in comparison.








The other book is essential for anyone who meets any of the following criteria: a) a loved one who has colorectal cancer, b) is over the age of 30, c) wishes to avoid one of the most treatable cancers, and d) thinks that cancer can't happen to them. For any of my friends and family who want to know the nitty gritty about my cancer, this book is perfect.

Prepping for the CT scan

Tomorrow morning the docs are going to do a CT scan to look for signs of "mets." That's slang for metastasis. Funny how quickly you pick up the jargon when reading stuff about cancer. So around 9pm I get to guzzle a lot of barium, then repeat this in the morning. Emily had to drink this stuff when we were worried about her reflux, so if she can handle it, so can Dad.

My shoulder still hurts from the porta-cath, but it's much better than yesterday. I just have to remember that I can't pick up the girls with my left arm. Fortunately, when I forget, my shoulder quickly reminds me.

Love,

Cj

Porta-cath not Mediport

I was mixing up my terminology the other day. I had a porta-cath installed in my chest. The procedure was pretty simple, and I was asleep for its entirety. Now my left shoulder is just sore as can be. That should ease up a bit as the incision heals. My spirits are pretty high, and I'm anxious to start treatment.

I go in early Monday morning for a CT to check if there are any signs of metastasis, then I meet on Wednesday with my oncologist. I expect that I'll start both chemo and radiation therapy shortly.

According to my surgeon the gameplan is to have 3 months of chemo/radiation therapy to shrink the tumor as much as possible. This called neoadjuvent therapy. Then the surgeon will remove the tumor in a procedure known as resection. Afterwards I'll have at least 3 more months of chemo depending on the results of the surgery.

I'm reading Lance Armstrong's book "It's Not About The Bike," detailing his recovery from testicular cancer that had metastasized to his lungs and brain. Even forgetting the parts about his cancer, he's an inspirational story. On the same note, if you've been afraid to have a colonscopy, or thought that you weren't at risk, please reconsider. The procedure is simple, relatively painless (this is coming from a guy who's a wimp), and could save your life. Colorectal cancer is the #2 killer of cancer, largely because it's discovered too late. When it's discovered at its early stages, the prognosis is excellent. So, don't be a wimp!

The picture is from a stormy day a few weeks ago. Our house overlooks a field that will eventually become a elementary school. Click on the picture to see the image at full size.

Love,

Cj

Testing photoblogging

This is Maddie's birthday cake. She wanted pink...

Xrays and mediports

Today I go in to have a mediport installed. A mediport is like a semi-permanent IV. This makes it a lot easier to get chemo drugs into your system, as well as any blood draws for lab work. They're also going to take a chest x-ray to see if there's any obvious signs of spreading. Having a mediport installed really brings home the fact that I have cancer. It's going to be hard staying in denial with something sticking out of my chest.

Early next week I'll meet with my oncologist and start pre-operative treatment to shrink the tumor as much as possible before surgery. Being bald might be an interesting look, though I'm sure I'll be creepy without eyebrows and eyelids. Maybe Jen can draw fake ones on me like the women who pluck them out and draw them in.

I think this blog is going to be a great way of staying focused as well as keeping everyone up to date about what's going on. Be forewarned, I'm not going to edit this very much, so there may be times when there's a lot of raw emotion/fear/panic that may scare some of you. That's just me going through things, and putting it down on virtual paper is going to be very therapeutic (I hope).

Cj

It's been a long time

I''m amazed at how long it's been since I've posted to my blog. Funny how life just takes off. I'm going to try to make daily entries now, part as therapy, and part in the hopes that this will help others who are dealing with the same things I'm dealing with. I've sure realized one thing though, it's not what's inside you that defines you, but what you do. So I'm going to start doing more, and keeping less inside.