Chondrosarcoma – ah shit, bob's sick

Tomorrow we’re back off to Beantown at 7:30 – 8 am. Proton is at 11:30 and usually I have to stop at least once during the drive to stretch my legs and walk around a bit.

Without IMRT treatment this week, I’m hoping that it’s a calm week, and that this is truly a no side-effect deal. Actually, I’m hoping the rest of this treatment experience has minimal effects on me so that keeping up with things isn’t such a struggle. Unfortunately, I feel like I’ve fallen behind again and catching up can be a real challenge.

Earlier this past week, like last Monday and Tuesday, I had complained to Doc (and the nurses for that matter) about the constant fatigue I’d been having. some days, I literally slept as much as eight-teen hours and was still totally exhausted. You know, all the brochures from the cancer societies and hospitals are so blatantly unrealistic that they should have been printed on comic book paper. You know the type … or maybe you don’t, but you know the type of “salesmanship” brochure I’m talking about. It’s no different then having a brochure about “how easy” it is to install something … say like a sliding glass patio door.

Four Easy Steps, No Tools Required, Easy Installation, Installs In Minutes … get the idea? You know damn well that installing that door or assembling that piece of furniture isn’t going to be done in a few moments, and it’s going to require the skill of a specialized workman, and let’s not forgot all the extra tools that’ll be require.

But these brochures have names like:

What You Need To Know About Cancer-Related Fatigue, Stress and Fatigue, Cancer and Me. The thing that’s gets me, is none of them, ever mention anything realistic, that regular people actually have to do. They suggest you “track your energy” and list things like.

Day 1

8:00 am. Wake up

8:00 to 10:00 am: Coffee, newspaper

10:00 to noon: walk in the park

noon to 2:00pm: lunch

Helpful Tips include:

Do not do things that take concentration or energy

Do not do stressful or difficult things.

Try Yoga classes.

Who the hell lives like that! … and how do they do it? Let me know because I want to join that club. That’s the way I want to live, I want to spend 2 hours every morning reading the newspaper and sipping coffee, and then a nice leisurely stroll through the park for another two.

I don’t mean not to be thankful for the brochures or that there are places out there that are willing to even print material for people to have, but my goodness make at least a little realistic.

First off, when you’re experiencing “real” fatigue your day is going something like this:

Day 1

Before 8:00 am. Sleeping

8:00 to 10:00 am: Rolled over, Sleep more.

10:00 to 10:03 am: Urinate

10:03 to noon: Sleep

noon to 12:30 pm: prepared lunch, but don’t eat

12:30 to 2 pm.: Nap, more sleep

2 to 2:30 pm: Violent vomiting, changed clothes

2:30 to 6 pm: Sleep

6 pm till morning: Sleep

Helpful Tips:

Repeat daily until treatment ends.

My list above is not unrealistic, this is what happens when fatigue and stress grab a hold of you during radiation treatments. I didn’t think about taking a walk in the park, I wouldn’t have been able to keep my balance.

Cancer patients need brochures like:

How To Crawl To The Toilet After Radiation

How To Prepare Dinner While Puking

Paying Bills From An Empty Checking Account

How To Get The Kids To School Without Leaving The House

That’s the brochures we need during treatment. Come on American Cancer Society, spend peoples donation money on something that’ll help them … not depress them.

Cancer patients have to live at the same time they have cancer, and always while the cancer is most active. I’d have a hard time telling the CVPS (Vermont Electric Power Company) that I couldn’t pay this months invoice because I was too sick to make out a check.

Luckily, I have Sher to help with a lot of this “living, daily stuff” … but not everyone does … many don’t, and you wonder why depression grabs hold. Sher has taken a huge load off of me, and put it on herself. She’s not only doing all the things she regularly did … but she’s doing all my things too. I have a whole bunch of new things to deal with let alone all the old things life continuously brings you.

All that is considering that your house and life are running as they normally would, but what if something new happens, something big. Like this weekend, we think our septic system at the house is in trouble. Like so many this year, with all the rain, it has started to fail and we’re concerned with having it replaced. It’s a fifteen thousand dollar event. Sher and I now have to deal with contractors, excavators and all the other stuff, still maintain life and still deal with the cancer stuff. Yes, we’re going to do it … but it’s going to effect yoga classes, and walks in the park that the brochures suggest.

My point here is that you have to be realistic. Sher and I are just regular folks, we work, we live, and stuff happens. Some good, some bad … but stuff is always happening.

I think I’ll start a series of my own cancer brochures for real folks, living a real life, with realistic ups and downs, and how to deal with them.

Wednesday Evening (10:00pm) 8/19/2009

I’m heading for the circus in the morning!

Tomorrow, (Thursday) is a big big day! At 7:00am in the morning they want to CT scan me for more cancer in my body … then they want to take some blood samples too. But why 7 in the morning I ask.

Now let’s see, I live about an hour from the hospital, so that means I have to leave the house by 6am … but I have to be awake enough to drive too so that means I have to get up about 5am … but wait, I’ll want to take a shower before going to see the doctors … so now we’re talking about 4:30am … now how’s this good for me? … oh wait, I can’t have my coffee either. This is cruelty my friend … it’s a conspiracy to make the sick, sicker I tell you. But I do get to drink some liquid garbage so the scans are clearer.

Before I had this cancer I didn’t do 7am well … what the hell’s the hurry? They’re making me feel crappier keeping these appointments.

Everything seems to be “rush rush rush” …. until its vacation time for the Doc or some other thing. I may not have much of life left … but I still have a life … and I want to live it.

This is the last ridiculous appointment I’m keeping. You hear that Doc? … “I ain’t doing this no more, no way!” … it’s too disruptive to me, my entire household … even my dog is upset! No more early stuff … let’s do it after dinner from now on.

If I continue to keep this schedule up, it’s going to insure that I spend time in hospital … from exhaustion!

I have to go to work too you know, it’s not easy to program on a tired mind.

August 16, 2009

A few weeks ago before I knew what was coming at me, I’d decided to re- start or re-write an old website that I had lots of fun with.

I used to own an art gallery/coffee house in Chester, Vt. that became pretty popular. Folks used to come in for breakfast, lunch and sometimes a lite dinner and of course in a small town you get know every one of your customers. After years of running the coffee house (to make a long story short), I decided to close it. But, a lot of my regular customers were lost as what to do for lunch. At the same time, I had taken a job with a company in town that employed quite a few people … especially for a small town.

Anyways, it was always a struggle to figure out what to have for lunch. Not only for myself … but for the folks I now worked with and past customers. Some of my old customers used to stop by the house and ask me to make them some lunch! Now thats unusual .

So as a joke one day, one of old customers said I should make a TV show called “Cooking Without Bob” … we all laughed, and I decided to build a website that would deliver suggestions of what to have for breakfast, lunch, dinner or an in-between snack, depending what time of day you logged onto the site …  just for fun. This all happened years ago.

Back to today … a month or so ago I had been thinking about re-building the site except now I was a much better programmer and decided I’d set up a little database and enter the data/suggestions that way. You know, you’re typical MYSQL database with PHP trimmings and just have some fun. So I started it.

There’s not a lot of data in the database yet, but I a few suggestions at a time. I even have a few recipes and facts in it. It’s fun … I use it myself when I don’t really know what I want to eat. I’ll keep adding as much and as quickly as I can. Unfortunately, I’m not feeling quite up to “par” today and probably won’t add anymore today. But check it out … it’s pretty funny. The site knows what time it is and delivers the content accordingly. You can also chose the time of day you want suggestions for.

Here’s a link:

http://www.cookingwithoutbob.com

Cooking Without Bob