Chondrosarcoma – ah shit, bob's sick

It’s Sunday, and it’s an odd day compared to the average  here in Boston. I’m never here on Sundays, but this week due to the Thanksgiving holiday, my schedule has been changed and I had to return on Sunday for a treatment. What’s weird is, that I expected the campus to be busy and maybe even more busy then regular days … but that wasn’t the case.

Everything I accustomed to was closed. Even the valet parking, the coffee and food commissary, as a matter of fact, the entire Yawkey building was basically closed down. I actually searched out a policeman and asked if I could park in the lot and get through the building. Even the rotating doors were locked! He took me through.

The main hospital across the way looked open … but most of the outer buildings all looked closed down. I personally thought Sunday would be a busy day for visitors and things like that … but I guess not … how odd.

I did manage to get into the Proton Center and get a treatment which now leaves only another ten to go.

I also met with Doc today and he explained that the next step was to really hammer the tumor for the last ten sessions … I mean really hammer it. This means increased dosage with Each treatment and probably a little more sleepiness and nausea then I’ve been experiencing with Proton … but you know, that’s a small price to pay.

Working accurately around the nerve bundles has always been an issue, but it’s starting to have an effect on my walking any distance. I can feel the muscle and nerves in my legs painfully complaining each time I get treated. It’s necessary to hit the actual nerves in order to totally destroy the tumor. They’re entangled in a way that you can not attack one without attacking the other. This is the reason why the conventional surgery was so invasive and guaranteed to do permanent damage. Their plan was to simple cut out all the nerves and muscles along with the tumor.

The theory behind proton treatment is that the normal nerve and muscle cells will recover from the proton beam (hopefully in time), but the cancerous tumor cells won’t. Of course, it’ll take months if not years to determine if that actually happened. We just have to wait and see how things pan out.

Other then the pain, in the back of my right leg, I feel pretty good. There is still a constant tiredness and I expect that to increase a bit over the last ten treatments … but then I’m free for awhile.

One of the next things I have to deal with is finding a doctor in Vermont that is able to watch this cancer, read the scans and tests, and make suggestions on and if I need to return. Some of this Doc has said he’ll do … but we’d both like to find a place closer to home that can at least watch on a six month basis as things progress.

New on the audio page is one of the seminars I attended, The History of Proton Therapy by Ethan Cascio, in the Gointein Conference Room at the Francis Burr Proton Center at the Massachusetts General Hospital. Wow … what a title! Unlike all the other audio recordings on this site, I did just a bit of audio engineering on this one because the background noise was high … basically, I simply cleaned it up a bit. For anyone considering proton therapy for any reason this is an excellent seminar that covers the basics and a little bit more about proton. Runs about 75 minutes. Wear your physics hat if you listen.

This past Friday, I thought I’d felt the technicians doing extra registration marks and set-up on me, but I didn’t think much of it, as is often the case with proton therapy, the angles and directions they fire you at, often change. However, when I got back to Vermont later that evening and removed my shirt, Sher said “what the heck is THAT on you?” … I replied “what?” … and started to look at my side in the mirror. Sure enough, there was writing on my side but I couldn’t read it in the mirrors reverse view. “what the hell does that say?” … here are the pictures. It’s a note to my son Alberic from the technicians J

I’ve been exchanging emails with David Spahr who recently published Edible and Medicinal Mushrooms of New England and Eastern Canada. Here’s a link: http://www.randomhouse.com/catalog/display.pperl?isbn=9781556437953

David is an interesting man with his own cancer story, check out his site too:

http://www.mushroom-collecting.com

This week was the ARIS Annual Meeting, the bad news is unfortunately due to treatment schedule I missed it … the good news is, I should be around next year to attend. Thanks to ARIS that is now a realistic for-see-able goal.

There are two new projects I’d like to add to my plate if my energy returns to anything remotely close, to what it once was. I have both these things pounding my mind each and every day and am going to have to do something about them. They are sort of tied together in some sense, but need to have separate indentities too.

One is, I’d like to start a foundation for cancer’s that are rare … and I mean rare. Even at MGH’s Resource Room in the Cancer Center, I saw abosolutely nothing on Chondrosarcoma. No books, no films, no data stats, nada. Even the staff that worked there were stunned at what they were missing. The thing is, is that your spirit is lowered when you can’t find a story, or a letter, or anything about what you have. Not to be foolish … but it was very depressing to see a huge resource like this with nothing about your cancer. So I’m thinking the goal of the foundation would be to handle or create data, on “missing cancers” that aren’t so popular (for a lack of better words), so that no one is left out. No one should be going through this without some information available. Even if it’s doctors notes and reports.

When I started to research my own cancer that‘s all I had to work with! I had a few reports that Doc D. and some colleauges had published in remote medical journals, and a few other papers on the internet … that’s it. Even my primary (family) doctor had to research what the heck it was before contacting me to say what it was I had. It shouldn’t be like that. No one has collected this data, and it doesn’t look like any is about to. The reason I want it to handle more then just my cancer is because there just aren’t enough people with it … but, put all those rare cancers together, and you have enough to create a library of information on rare cancers. It may not ever be a huge foundation … but at least there would be something to gather information from.

I don’t believe this is a hard thing to do … simply raising some money and awareness would be a good start.

The other project I’d like to see started is a general, online, data collecting bank(for lack of another word) for all cancers. This would be a larger project. In it’ssimplest form, it would collect data from volunterary cancer patients around the globe and search for similarities within catagories. In basic, Howard’s idea. Cancerpedia, built be people themselves, with information and questions provided by health professionals could be a huge value. At this point in time, no one seems to be collecting and mining data in any organized way. Beating cancer is going to take more effort then just doctors can give. It’s going to take all those effected and involved to get together and share information.

This of course would be a huge project …. but it could happen. With todays internet community, I believe you could collect enough data, stories, research, and information, globally, to make a difference in the way some cancers, are not only being treated and viewed, but finding where commonalities (that are now being missed, through an entire array of possiblities) come together, through areas like the environment and other global issues (war zones, climate, etc etc).

Don’t believe for a moment, that cancers are all genetic screw ups in individuals bodies, or that it’s all inheritence based, or even that it’s all environmental. Let’s start collecting that data and information (even if it takes twenty years), and see what we get.

OK …. This is probably a huge amount of dollars … but it could happen.

Tomorrow morning, I head back toward Boston and Nahant for another round of treatment, only about two more weeks to go!

Thanks for the Happy Birthday Wishes folks … yep, November 28 is my birthday, and one I thought I may not see earlier in the year…. So it’s extra sweet turning 57 yrs.old. How many more to come? … I don’t know, but this one is soon here and I’m going to enjoy it.

Back in Vermont again, but this time only for one day (Saturday). Sunday morning I’ll be returning to Beantown for another round of therapy. Sunday? … yep, schedule changes for Thanksgiving.

The meeting with Doc yesterday went well, he seems very satisfied with what’s going on … but also explained that it’ll take months to see if we really did as much damage to the tumor as he hopes we did.

There are a lot of things about protons they don’t fully understand yet, and one of the things they are not able to do yet, is instantly, and accurately, measure the full effect that treatment is having on you. You have to wait, and do comparative scans later on to see the damage, the treatments have done. From what I understand, PET scans that use chemical analysis to measure levels of certain chemicals in the tumor is currently the most effective, but an expensive measure.

My buddy Harry M. sent me an article about Peter Tork of The Monkees had proton therapy at MGH! (Rare Throat Cancer), and suggested maybe he wrote the line “Don’t Die With Your Music Still Inside You” … maybe so, who knows.

Hi Kate M! Sorry I wasn’t more responsive when I saw you today, but I literally just pulled in from a long tedious and almost painful drive L …

You may notice that the “depression level” in the right-hand bar has risen higher today …well, the reason is that my son Alberic has acquired a nasty cold or flu and that means we need to be separated for this weekend … that sucks …. And yes, that depresses me. Unfortunately one of the side effects of proton is that my resistances and immunities are extremely low.

Dave J. and his wife have just returned from a trip to Cuba! Wow … those lucky Canadians got to see the Hotel Ambos Mundos … where Hemmingway wrote the manuscript “For Whom The Bell Tolls”. Luckily, Dave was thoughtful enough to send me some photos of the famed Hotel. They’re at the bottom of this post … thanks Dave, I really appreciate that.

OK … for the last snippet of useless information on this evening’s post I’ll leave you with a sexist, racist, joke that you probably don’t need to hear … but somehow I thought it was funny.

So here you go, a Thanksgiving joke:

“If the Indians had given the pilgrims a donkey for the first Thanksgiving instead of a turkey, … we’d all be having a piece of ass for Thanksgiving”.

Dave’s pics of Cuba!

Thanks Dave …. love these, I want to sit at this bar!

Here are some quick notes:
Pertaining to the post “It Came From Outer Space“:
I asked Doc where he thought these rare type cancers come from. He said, “no one knows, no one is even close to knowing, and if someone does tell you where they come from, chances are they’re wrong. At this point in time, science just doesn’t know.” He added, “someday, maybe in our lifetime, they may begin to get an idea as to how these things get started, but nothing know”.

To me, this sounds like even more of a reason for Horward C.’s suggestion of a huge, online, data collecting study about cancer.

I’ve made an adjustment to the amount of treatments to go in the right-hand column n the site. According to the docs records (which I’m sure are more accurate then mine), I have received 31 or the 43 needed treatments, leaving only 12 to go. The column now reflects that.

That’s off 7 treatments from my calculations … I must’ve missed quite a few days of marking them down. Guess I’m not real surprised at that.

That being the case, I expect that the last treatment could be as soon as Dec 8th, and then two days of scanning and testing before being entirely released. At least that’s the way I understand it at the moment. That’s great, earlier then I originally expected and really it can’t come soon enough. Just all the traveling has been a drain on my energy levels I’m sure. The return for check ups schedule has not been entirely set yet … but will involve multiple scans every 6 weeks for a while.

Wednesday was (intentionally) the busiest day I’ve spent in Boston since the beginning of treatments. I’d been wanting to try a day that was full of activity (like a normal day, before cancer), to see how long my energy would last, and how much I could “push” in a twenty-four hour period. Now to be honest, it’s also the only day that I tried to do anything other then show up for treatment,  try to work on the pc a little, eat a little, and sleep. I’ve taken almost no other activity while being here … At least nothing I can think of. Oh yes, let’s not forget the “driving” thing … lot’s of that.

So here’s what I did on Wednesday:
Therapy 11:40 am – 1:30pm
Break 1:30pm – 2:00pm.
Seminar 2:00pm – 3:30pm
Break 3:30pm  – 4:00pm
Seminar(2) 4:00pm – 6:00pm
Dinner at Evoo 6:30pm – 8:00pm.

Add an hours driving, and you have the basic idea. In between all this I was of course walking and traveling around the MGH campus, which is pretty darn big … at least for me it is. Getting around isn’t like it used to be when I was thirty or something.

Now, normally, I handle a day like this with ease, but in this case, I was totally exhausted at the end of my day which was about 8:30pm by the time I got back to Nahant. I barely had the energy to talk with Sher before going to sleep. As a matter of fact, I’m still tired from it today. Was I disappointed? Well, in some sense, yes … but I say that because I’ve always considered myself a high-energy person and it’s frustrating not to be able to do, as much as I could before.

In another sense, I’m not disappointed. I feel like I’m doing pretty damn good considering. I have cancer, I’m traveling back and forth weekly between two homes, I have five huge doses of radiation a week, trying to hang on to financials, household, business, job, and  two months ago I was literally dying … yes, I’m pretty proud that I’m able to do what I’m doing. It’s more amazing actually, when I really sit back and think about it.

I’m kind of stunned that I have only twelve more treatments to go … man that really hits the nail on the head for me. I know I’ll be able to finish that up without any issues … no kidding, I got this part of living with cancer licked. That’s the first step to re-grouping  right?

I never really looked at this in a co-joined way before but, … first I was diagnosed with Chondrosarcoma, now I’m just about to finish up the best treatment program available/possible … what’s next!?

OK … let’s not get carried away here … now we have to learn to live with this, for  as long as we can. But hey … I’ve gained a chance, a fighting chance.

I’ll be adding the recordings made at the seminars for those who think they’d like to learn more about the use of protons as a medical cure for lot’s of things.

It’s Tuesday evening and I’ve just returned from dropping my older son from Tarpon Springs, FL., off at Logan Airport. He’d been here for the last 10 days, but spent some of that time up in Vermont (while I was in Boston getting treated), helping Sheri get some stuff in and on the house repaired. It was wonderful to see him (even though we talk online nearly everyday), but it was also an exhausting experience during treatment. All and all, I have to say that was a great visit and I want to thank him for that. I only wish I’d had more energy to put into it.

Welcome back Dave J. ! Love those pics! I wish Sher and I could’ve joined you … btw … get ready ‘cause air time is coming at us soon!

Monday and Tuesday were both, plain and simple, exhausting days. Technical problems appear to have plagued the proton center so waiting in the sitting room has gone from the usual fifteen minutes to two and three hours. That makes for some serious discomfort for most patients. It’s hard to sit two or three hours when your feeling good … it’s close to impossible when your sick.

We all (patients, nurses, doctors, techs, everyone), made the best of a bad situation as we could be. They tried, really tried … but you know some of the patients just couldn’t handle the waiting. Sitting for hours isn’t any fun when a life saving device is tangled in snafus … but in the end, I think most people got a treatment … I did.

After treatment today I went up to the eight floor and visited what they called the Peace Garden. Basically, it’s a rooftop garden filled with benches, plants and lovely places to sit and maybe think. It was a very peaceful place to be.

It’s difficult to explain, but as I re-entered the main building again I noticed a long hallway leading down and around a corner. Being the typical nosey person (by nature) I am, I wandered down the hallway. As I was trying to get my bearings as to where I was, where I had parked my car, etc etc. I noticed along the top of the wall were hundreds, if not thousands, of hand written messages by past cancer patients of the center.

They were hung in the same way that Buddhist flags are hung and I thought how interesting … of course, there was no way on the planet I was going to walk by and not read them. I had to, it was like a needle in my arm, an addiction, I was totally driven to read the messages as I slowly made my way down the hall. They were made of little squares of brightly colored cloth, maybe twelve inches by twelve inches, and all huge variety of colours.

Each one had a hand written message on them, and a signature, initials, and some were anonymous … many had spiritual messages, messages of hope, peace, acceptance of death … but one, an anonymous one, really caught my eye. It wasn’t the colour or anything like that, it was purely what it said.

Someone had written “Don’t Die With Your Music Still Inside You” on one of the clothes. Let me tell you … it sent a chill down my spine, literally, when I read it. I gave a shiver, and tucked the words away in my mind.

An hour or so later, as I was driving back to Nahant, those words started to ring in my ear, over and over … maybe they were trying to tell me something. They seemed to reflect something so deep inside, so personal and yet something that I wanted to, or was able to, share with others. I thought about this blog and “Don’t Die With Your Story Still Inside You” … what a powerful thing to write. It seemed to confirm the reasons why I continue this blog and the recording of this entire cancer thing … just amazing. What beautiful words.

It’s funny sometimes how a few words can effect you or what your doing. Those few words have given me more incentive to continue the blog and this ongoing story.

What does it mean? “Don’t Die With Your Music Still Inside You” … what does mean to you? For me it simply screams out why I started this blog in the first place. Why I called it possibly, my last piece of art … For those of you that have, or have had, any sort of streak of creativity in their lives it may be easier to understand. I’ve always considered myself a creative person and in several fields, art, music, poetry and yes, although most programmers won’t agree with this … but computer programming is, or can be, extremely creative. Math is art … no doubt about it.

Creativity comes in waves that can last anywhere from a few seconds, to years and years. Sometimes, you can turn it on, like turning a water faucet, turn it on, on demand. Other times it’s a struggle to get it started, to get those creative juices flowing and the thought process moving along.

It’s sort of like this rush or hurry to get all these things out of my head every single day while I still can. I don’t feel like my creativity is coming to an end because my health is faltering … if anything is happening, it’s exploding into a new genre. More powerful then ever … I feel like I could write poems, songs and stories all day long for the rest of life and never, ever run out of creative juices.

You know, I see the world differently now, and so there’s a whole new “world” to draw creativity and inspiration from. Some things that used to matter to me, I really don’t give a damn about any longer and visa versa. Example: I just stepped outside for a moment to grab a breath of the sea air here in Nahant and I can honestly say that it smells different then I’ve ever smelled it before. In some sense, I can say that I’m a whole new me … and I don’t think we all ever get that opportunity to experience that feeling. Don’t get me wrong, I’m not saying having cancer like this is great, but I am saying that creativity is at an all time high, and that is great!

Weird? … no, not really, that’s something sort of positive the cancer has given me … this incredible urge or drive, to finish up my art, as though I should empty it all out of me before this life finishes going sour … and it’s giving me the time to do it.

Anyway, for me it said, continue to write this story, and so … so be it. Someday, somewhere, it’ll touch or help someone through a nasty time in their life. And that’s exactly what this is all about … I don’t want to die, with this story still inside me.

Here’s a pic taken from the 8th floor of the Proton Center where the flags were hung. What a contrast from Vermont. This is where I spend my days.

Thanks for spending your time, reading this.