Treatment Finale

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

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

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

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

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

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

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

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

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

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

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

One day (or minute) at a time

It's ironic that before I got cancer, I was always looking towards the future with grandiose plans and dreams. Now it seems like I just look forward to the next hour. Sometimes I feel like someone thrust into a marathon race, who starts to realize just how long 26 miles really is. One step at a time.

love,

Cj

RIP

Peter Jennings
1938-2005

Cj

Weight loss and White Blood Cells

Had a good visit with the PA at the oncologist's office today. My white blood cell count is still too low, but it's better than last week's result. I need to be really careful about avoiding any infection or flu type stuff since my body will have a hard time fighting it off. She was more concerned with my weight loss. I've lost about 10-12lbs since treatment started, and that's not a very good rate. One or two pounds per week is fine, but 5-6 is too much.

Food just doesn't seem very appetizing to me now, even my favorite foods. Once I start eating something I'm usually okay, but even then, I just can't eat as much as I used to. At least I don't need to worry about eating health food. They just want me to get lots of calories and protein for now. Sadly my favorites like pizza and hamburgers are the least appealing things to me.

According to the treatment binder they give out to new patients, my fatigue isn't an unusual side effect of things. Between the chemo, radiation treatment, the cancer and the diagnosis, it's pretty common to experience fatigue. Not much I can do about it other than get plenty of rest, eat more, and try and get a bit more exercise than I have.

One of the better things to come out of the meeting was that neither of the chemo drugs I'll use during treatment will cause hair loss. I wasn't very concerned about losing my hair temporarily, but I know that it would freak out some people, especially my girls. Maddie is a bit pre-occupied about my porta-cath, and I know that she's worried about "Daddy being sick." So the last thing I want to do is freak her out.

I did notice something different at the infusion center; there were two patients either my age or younger. It's hard to tell the age of chemo patients, since it can age you quickly, but it was strange to see two young men there. It made me realize how horrible a disease cancer is, and that no one is immune. So, for those who haven't made appointments to have a colonoscopy, what the heck are you waiting for?

love,

Cj

Name Change

The title of my blog used to be "I've got a bad feeling about this..." That's a line from Star Wars and The Empire Strikes Back, but I think it might have been confusing people who didn't realize the connection. I like the new title better...

love,

Cj

The grass is always greener...

It's slowly sinking in that my treatment is going to take ages to finish. Three months of chemo, one month of surgery and recovery, then three more months of chemo. I'm only about two weeks along, and it seems like forever. Even after treatment, I'll still need periodic tests to make sure the cancer has returned. That's what makes this so frustrating to cope with on a daily basis.

I've never been very patient. In fact, I'm usually quite impulsive. I've always wanted the best (although I could rarely afford it), and daydreamed about fast cars, mansions, etc. I was never quite happy with what I had, or where I worked. Part of that comes from being a willing accomplice in our materialistic world where we judge our happiness by our possessions. This leaves an unfilled void as we strive to keep up with the Joneses.

Yet the grass will be greener, just in a couple of months. I'll be able to turn in my chemo pump, stop taking daily trips to the radiation center, and start to resume a "normal" life. I'll be able to take a shower without worrying about IV lines, and the toxic waste clean up kit can go in the trash. Maddie won't ask about my "ouchie" where the portacath was installed. Life will resume. For now I'm just in a holding pattern waiting for permission to land.

love,

Cj

Another Week

Nothing much new. Radiation treatment doesn't have any serious side effects yet except for some nausea/diarrhea. I'm still pretty tired, and not sure what exactly is causing that. I feel pretty good otherwise. Not much to write about...

love,

Cj