Chondrosarcoma – ah shit, bob's sick

Chondrosarcoma Update:
This past Thursday (July 22, 2010), I returned to MHG in Boston for some follow up scans and tests to see if there have been any changes in my cancer condition.
We left Vermont about eight in the morning and took the three hour our drive at a leisurely pace. I left a little extra time for the trip because often there’s road construction on route, especially in the summer. We arrived with about half-hour to spare but by the time we parked and found the Department of Radiology in the Founders Building at MGH that spare time was just about gone.

The first test was a complex MRI (one of my personal favorites) that involved setting up an IV with mix of several solutions for reading levels of activity in the tumor region of my spine. It’s a long test, about thirty-five to forty minutes and they do several passes. First pass is to get an accurate measurement of the tumor itself … like actually measuring with ruler, height, width, depth.

Then they inject you with a contrast so that blood movement (or non-movement) can be measured accurately. The next injection is to see the amount of oxygen that the tumor is (or is not)consuming, then one for the amount of blood sugars that the tumor may be consuming.
During all these scans … and I mean the entire time, you can’t move a muscle or the process basically has to start over. It’s important because when the Doc reads these scans they have to line up with older scans, and with each other. This is the reason they tattoo’d me in the beginning … so that alignment can always be reproduced. Any movement does two things. One is of course it makes it almost impossible to line up with other scans and secondly, the images blur when you move.

So if you want to get out of that tiny little tube … you’d best be still. It’s a tough one because it’s kind of like laying down in an empty toilet paper roll made out of metal! It’s tight (not for claustrophobics), very noisy, and there seems to be an inherent lack of air movement. Not a comfy situation. Oops, and can’t fall asleep either (although I’m not sure anyone actually could because of the noise). People tend to move in their sleep and again, that’s not a good thing in this situation.

My guess is that I spent about an hour and a half to two hours … not fun.
The next thing was to get a series of chest x-rays and a few other what seemed to be random bone and joint pictures. The purpose of these is to check and see if there has been any cancerous metastasis. Basically, they’re looking for cancer they may have spread or took up residence somewhere else in my body. The most common spots for this to occur is in the lungs, chest (especially the rib cage), and joints. In chondrosarcoma, the joints are important areas to keep an eye on.

By the time I was finished with that I was ready for some fresh air. We took a walk outside for a few minutes and looked at the new building MGH is almost finished with. When it’s finished it’ll house most of the equipment I’ve been talking about since the beginning of the blog with the exception of the actual proton machine which requires the better part of a building on it’s own.

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Here are some basic updates on where things are currently standing.

Next week should be my final week for treatment. If I understand correctly, I have three more treatments to go … which is great! The only down side to this is that they’re three of the treatments that I got in the beginning, you know, the ones that make you feel sea-sick. Those high level IMRT treatments that spread far and wide through out your body.

The reason for this is that they’re used as a kind of broad general “clean up” to assure that all areas of the tumor and surrounding area have been heavily radiated. Like a second coat of paint sort of speak. This is an important finishing step that can’t be ignored. So, my guess is, if they’re anything like last time I’ll be feeling crappy for the bulk of next week … but then, all treatments stop for six weeks.

On January 21, I need to return to the Proton Center, and do some heavy testing and scans that will begin the process of looking for what damage was actually done, and how much the tumor was effected. At the same time they’ll be looking for new growth, not only in the treated area, but anywhere else the cancer may have moved to.

That’s one of the “not very funny things” about Chondrosarcoma and some of the other cancers. When it knows it being attacked (like we’ve done with this treatment), it has this nasty little habit of sending off little groups of cells elsewhere in the body, in an attempt to save itself, and take up residence in another bone or cartilage, somewhere else in your body. That’s precisely what they don’t want to happen and what they have to watch out for.

That’s the reason that chondrosarcoma is so dangerous and deadly. It never really goes away and leaves your body completely. There is always some, somewhere in you. Trying to control it, and keeping after it … is the best they can do. So this is what we need to learn to live with.

They also gave warning about the burns (or whatever they’re considered) that cover a good sized area of my lower back, the warning was that they may blister and become sensitive about ten days after all treatments stop. I’m not clear on why that is … but that’s what they said would happen. Keep it clean and dry and they should heal with in a week.

So all said and done, I’m feeling pretty positive and upbeat about where I am at the moment.

Happy Thanksgiving to those that read this blog and recognize it as a holiday. Happily, I have only Wednesday’s treatment to go before heading back to Vermont for a four day span. It’ll be the longest I’ve been home for the past three months and it’s already starting to feel good.

Can’t wait to pop that Turkey in the oven and start to smell all those familiar scents of a classic Thanksgiving dinner. I’ve been accustomed to those smells for a full fifty-seven years. Sure, I always stuffed myself full of turkey on Thanksgiving Day, along with mashed potatoes, turnips, carrots, lot’s of stuffing and gravy, and let’s not forget all those pies and desserts! Yep, I was one of those that indulged to the maximum.

I make my turkey the same way my grandmother and mother did and have continued that tradition through my household too … Thanksgiving just isn’t the same without all of it.

But this year I’m thinking different, yes of course, I’m going to have my traditional Thanksgiving goodies … but honestly, it’s only because others have helped me, through a tough year … the toughest of my life and you damn well better know that I wouldn’t be enjoying this years festivities if weren’t for their help, your help … yep, you.

So what am I thankful for this year?

I’m thankful for those of you that have banded together and helped Sher, Alberic and I make it through the year. I’m thankful for all those supportive letters and emails that helped keep my spirits high. I’m thankful for the decision that both Sher and I made, to go with Proton Therapy instead of the traditional surgery.

I’m thankful for ARIS (and all whom work there) for helping keep us afloat during these last months, and to Teri and Herb M. for supplying me with a wonderfully comfortable place to live.

I’m thankful for all those personal friends that understood my sense of humor and continued to make me laugh, even though most of the time I felt like crying.

I’m thankful for all the doctors, nurses, technicians and healthcare workers that have relentlessly worked on me. Not just at Massachusetts General, but also Dartmouth Hitchcock, Springfield Hospital, Francis Burr and the Cox Center. Let me tell you, I went through some doctors this year.

For all of Scifillian’s clients that have patiently waited for updates and business applications while I been being treated. I’m thankful for all those that have ordered new work to be done and helping to keep our business going.

Just look at the list in the right hand column and you’ll see a lot of them … and I have a ton more to add. This … this is the spirit of people helping people, that makes it a Thanksgiving to me.

I’m thankful for my doctors … no really. I know they’re getting paid for their work … but Doc D. didn’t ‘have’ to take a weird case like mine on. But he did, and I thank him.

Today, as I turned the corner of Cambridge on to Grove, I saw Larry out in the street with both walking canes and his sign hung around his neck, standing in the cold wind. I pass Larry every day, his hand-written sign reads “My name is Larry, I have MS, can’t work, help”. Usually I pass these guys up … but Larry really does have MS, he shakes like a leaf as he waits for donations from drivers and walkers that pass by.

I’ve spoken with Larry many times while I’ve waited for the light to change, he’s a kind and gentle man, he simply can’t work, and has no other option in life but to beg for a living. He’s lost everything … except hope and thankfulness that he’s alive.

As I often do, I reached in my pocket and handed him a few bucks out of the window of my warm car, and as he always does, he replied, “thank you” … but this time I replied back again said “no Larry, thank you my friend”. He looked at the Disabled stickers on my car, and the walking cane I keep between the front seats, and reached in his pocket and took out more money then I had handed him … and offered it to me! My eyes swelled with tears, and the light changed, and cars started to honk … I had to leave.

Yes, I’m thankful for Larry too. Larry’s offer to hand me more then I handed him tells me that no matter how tough you think you have it … there is always someone worse off and in need of help … now that’s Thanksgiving spirit.

But of all this stuff, do you know what I’m most thankful for this year?
Simply being here to enjoy it …. Thank you all.

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.

6:36:24 AM
Thankfully, I feel better this morning. Not 100% … but much better. What happened over the last few days was this.

This past Monday, they increased the does of IMRT radiation therapy that I was receiving. I was well aware this was going to happen, they clearly warned me I may get extra tired. What they did’t clarify, was that it was going to basically stop me from functioning in entirety, and prevent me from doing anything but the very basic survival stuff, and then barely be able handle that (like getting to the bathroom,  keeping nutritional substances in my system, and the intense desire to drink an ocean full of water), and  yes, sleep I did. 

The term “extra sleepy” doesn’t quite accurately describe the effects of being radiated, physical ruination and mental disparity are much closer descriptions that ought to be used. Now I can start to understand how folks that exposed to heavier radiation feel, whether it’s from weapons systems, stockpiled bombs or your local hospital doesn’t matter … it can make you sicker then any flu, virus or just about anything you’ve experienced … and just think, I did this in a controlled, non-violent, hospital setting!

The last heavy dose I got was Wednesday, and I can feel it slowly working it’s way out of my system. Hopefully, by the end of today I’ll be somewhat back to normal … what ever that means.

This morning I have number two of the proton series of treatments, which if like yesterday, I expect will be a breeze in comparision.

More to come tonight ….