Chondrosarcoma – ah shit, bob's sick

We’re back. A fast and furious trip to Boston’s  Cambridge area, proved to be the most fun Sher, Alberic  and I have had in some time. It was totally awesome trip with so much packed in our short stay that parts of it are still unraveling in my memory.

We had a fantastic hotel room on the River Charles that overlooked both the river and parts of Boston skyline. That’s one of the things I love about Boston, it’s big enough to have the feel and all the great things cities have to offer,  yet small enough that traveling around it is easy and simple whether by car, train, bicycle, boat, foot, wheelchair or any other mode of transportation you can think of. It even has a Segway rental!

Now my last trips to Boston weren’t exactly filled with fun and joy by any means … but this one was different, I enjoyed this trip to the max. Alberic hasn’t had the chance to visit many cities and I think he really got a taste of what life can be like there and it’s many offerings, and Sher has been many times but not for a long time so she felt right at home.

Our primary goal was to attend Mike’s graduation at MIT (Massachusetts Institute of Technology).  Now if you don’t know anything about MIT, I suggest you Google it because it’s just too much to write about here.  I will say that it is one fantastic place, where our future is being designed by the worlds brightest students. Brilliant is probably a better description. I have a new found faith in the future … now if we could only stop warring.

This year, two thousand, five hundred and thirty-three students graduated in every field of science I’ve ever heard of and a few that were new to me.  That’s fifty times the amount of students in Alberic’s entire school!

Being disabled, I must say that we were very well taken care, and help was available from the moment we reached the grounds, right up until the moment we left. Everyone was so helpful and courteous that it was hard to imagine needing anything more.  To say the least, the entire experience was awesome.

That being said, I should mention here that living in the city of Boston appears to be much more friendly towards those with a disability, maybe the word is “disability-friendly”.  Almost everything appears to be set up for wheelchair access.  Basically, getting around this beautiful city in a wheelchair is a no-brainer. You can wheel anywhere you can walk … and Boston is a “walking city”. Everything is close and compact. I guess I’m sounding like a travel agent … but it’s true.

The graduation ceremony was simple awesome. Ray Stata gave the commencement speech and basically lit the entire place on fire! Not bad for a 75 year old.  If you’re not familiar with Ray Stata, Google him and read up. We wouldn’t have a tenth of the technology today without him. Below is a pic of the Stata Center in which Ray, his wife Maria, and Bill Gates have built on Massachusetts Avenue near MIT.

But there was much more to the ceremony then Ray Stata’s speech. The student president gave one of the most inspiring speeches I’ve ever heard, let alone from a young person, and really gave me hope for the future of humanity. If this is an example of the direction that MIT is taking its students, then I have all the faith in the world that mankind will solve all these problems that our world faces today.

There’s a lot more to write about this trip, and over this coming week I have lots of photos and stories to share, but that’s it for this evening.  We also went to the Museum of Science, had lot’s of great meals, and made plans to return.

Today was the kind of day I expected it (the treatments, Boston, Nahant), to be like. Damn … it was just perfect, things went as smoothly as I could ever wish for. All my computers worked, treatments went well, no traffic, and the weather stunningly beautiful in both Boston and Nahant.

My day started at 5am. Had a cup of coffee, now in the past that would have been a pot of coffee, but that’s a “no no” these days. For the obvious reason that the treatments require laying as humanly still as possible. Yesterday I had stopped at Dunkin’ Donuts to grab a coffee for the drive into the city and by the time I got there, I had a full caffeine buzz going and believe me it’s make laying still almost impossible. So, I wasn’t going to repeat that again. So now, it’s one(1) cup, and I’m in the car.

I checked my email and a few other things and off I was off to Boston. Yesterday, I had arranged a new parking method that the Cox Center offers only for those that are actually getting treatments. And I mean just that, not consultations, not doctor visits, not visiting friends … only for those getting treatments at the time. It may sound stupid, but parking is a huge hassle and a big expense in the city. Not uncommon for people to be paying $12 and $15 for an hours worth of parking. If you have to do that 5 days a week, and that’s considering if your treatment is only 1 hour, I’ve already had days when my appointments have lasted much longer, that’s $60 a week, $240 a month. Add that up over the length of my treatments and we’re talking $720.00 at a minimum! Yikes, we’re talking about parking your car at a hospital that you’re already paying huge prices for their services. Couldn’t they throw in a parking stop? … well, not really, they have more important things to do with their funds … like help folks deal with their cancer.

Anyway, I find that the Cox Center has come up with a decent solution for $5.00 a day, no matter how long your treatment is and they even park the car for you (valet style).

OK … so I walk in the building (which is now a much closer walk, like 50 ft to the entrance way) and go in for my treatment. They take me almost immediately and treat me like a long lost friend … which is actually a really nice feeling. The doctors and nurses seems to remember every patient, their name, where they’re from … almost incredible if you think about how many people they deal with on a daily, weekly and monthly basis. 

Everybody I the cancer center is on a first name basis which makes it kind of fun. Well, as fun as the situation can be. Friendly may be a better word to use. But they are certainly kind, gentle, and thoughtful.

After treatment, which by the way went extremely well (I still felt micro-waved, but not nearly like yesterday), I had a meeting with Doc Delaney. We talked about the treatments and how I felt about them, how they were effecting me, if I was losing weight … you know all the general types things. Then he asked me where I was staying. I think he was expecting me to say the Hope Lodge or something like that.

Now you have to take a minute to understand Doc Delaney, he’s not your average doc. This man has dedicated his entire life to helping people in situations like me. He works hard and he works continuously. Sometimes it seems difficult for him to come down to a level of conversation that everyday folks would have. He is so “into his work” at the Center. His primary focus is making the right calls, at the right time during your treatments. There’s no room for mistakes and misjudgements. It’s actually hard to have a discussion about anything else but treatments. He’s not ignoring you … he is simply super focused on his work.

Well, I told him I was staying out on Nahant with the help of some friends, and at first he grinned a little, as if to acknowledge I was even speaking, but continued to read the screens in front of him. He stopped for a moment and explained some concern he had about how close the IMRT treatments were to certain organs and that some decisions were going to have to wait until the last minute, … and then in the middle of a sentence, he looked over at me, stared me right in eye, and said “did you say Nahant?”.

I said “yeah, it’s totally awesome out there, and so relaxing and calm, it’s just unbelievable, you have to see it to believe it”. I said, “come on out and we could have lunch or something, it’ll adjust your attitude for the day”. He looked at me … “really?”,  “why not?”, I said, “best little seafood shacks on the planet out there, and there’s always an ocean breeze, and it’s not  too cold yet”. “I think I may be able to arrange that’, he said … “we’ll talk about it again in a few days when you’re back”. Then he smiled, and I saw the human-side of this fabulous man.

A few quick notes:

I’m really behind on answering emails, if you haven’t gotten a personal response, you will … but you’ll have to wait a few more days. I have treatments tomorrow, then I have to drive back up to Vermont and get settled there again for a few days before returning to Nahant.

I guess I didn’t mention in the post that’s my treatments are going very well considering the degree of seriousness we’re dealing with. I’m glad I have Doc Delaney on my side.

After 2-3 days of struggling with technical problems I have everything working perfectly, but of course now I have to move it all back to Vermont for a few days … but I think that’ll work out just fine. 

In general, I am feeling ok. I, for the first time in several weeks, can actually feel my toes on my right foot again, and believe me, that’s a welcome feeling. My appetite may be on the increase again and then again it may not be … OK, maybe it’s the sea breeze that’s making me hungry?

Sleep? … I guess I’m paying the price for missing so much sleep when I was younger and had more energy. For the first time in all 56 years  of my life, I can sleep for 8 hours, roll over, and sleep for 8 more! I don’t always do that … but I could … no trouble falling asleep. 

I also got a smile from Doc when I told him I felt like I’d been micro-waved … but I’ll leave that for another time.

I feel bad for my buddy Harry at work. I had ordered 14 new computers and monitors before leaving and they got delivered yesterday on a giant pallet!  Just what he needed I’m sure J … sorry buddy, I owe you a big lunch when I get back. 

Someone suggested that during my treatments I imagine transferring the cancer specifically to Karl Rove … which made me roll right out of my chair laughing. However, I wouldn’t want to pass this even to an enemy … well, I want to hold that statement in reserve and think about that a bit.

I have taken a few pics and will try and post them while back in VT this weekend. 

Thanks … it’s getting late and I have some work to do yet.

Love you all.

Monday, October 05, 2009:

Sorry for not posting the last few days. Besides having computer problems, treatments and appointments have been taking much more time then expected. City traffic, lack of knowledge of the roads, and extremely windy, rainy weather have all played a role in this adventure.

Monday, the drive down towards the Boston area, was lonely. I’ve made this trip many times in the past, but it never felt like it did today. Even the music on the radio sounded lonely. It was depressing and for some reason I just could snap out of it. I felt like crying several times.

There was no reason for it to be honest. I’ve waited for this for almost 3 months, you’d think I’d be all excited, but it just wasn’t that way. The drive seemed to take forever and as the wind blew the fall leaves across the road in front of my car, I just simply felt scared and alone. Now I know that’s not true. I have so many folks behind on this … but it is, the way I felt.

I got a hotel room around 3:00pm and settled in. I couldn’t get my pc on the hotel network, and after trying for a few hours, and losing my patience, I decided to go get some much needed food. Had a great meal at a place called “Wild Willys” … a simple hamburger place, but they made really great burgers with just about anything you could think of on top. Of course I went for something outlandish like guacamole. Went back to the hotel and fell asleep.

Tuesday, October 06, 2009:

Got up at 5am, packed everything and headed off to Massachusetts General Hospital (MGH). I used the valet parking because it was much easier a walk, then using the elevators and hallways that lead down to the street level where I had to go.

Now even the walk I did have from parking to the Cox Cancer Center is really long … I mean it’s long even for those in good health, let alone those with cancer. I wondered why they did that … usually, places are aware that cancer patients often have trouble getting around and usually try to make things easier if anything. I should mention here, that there is a much easier approach, I just didn’t know it at the time.

So, it’s Tuesday morning and I’m at the cancer center.  They take me almost immediately after checking in. I have a card that’s kind of like a credit card except it has a bar code on it … like when you buy something at the grocery store. Each morning, when I go in, I run my card under the scanner and that checks me in and lets them know I’m ready. 

Tuesday, was basically another dry run. They drew green and blue lines on my back, lined them up the black colored tattoos (that they gave last week), and did a few runs in and out of the machine. This is the third dry run. Perfection is the key here … no mistakes allowed in these treatments.

See, you sit on a hard as hell table, in a freezing cold room. Your face is placed in a molded piece of foam (laying on your stomach), and they move the table electronically back and forth until your in the right position (seems to take 3 or 4 tries), then by yanking on the blanket beneath you, they adjust the left and right position. Kind of rolling your body until you land just right. Like dead weight. They use the weight of your body to get it exact. No matter how many times they have to move you … they do it.

Once you’re lined up, they lift your robe and start playing with the crayons! They mark out all the registrations, make the plan again, but never actually turn the machine on to blast you.

After an hour or so of this, they simply sent me home … to be continued.

I slept outrageously late today! 9am, yep … that’s 4 hours past my normal wake up time! On top of that, I took 2 naps … so I’m feeling pretty well rested.

Friday afternoon, the doc did give me some new stronger meds and I have to say, I think they worked just fine. I used much lower doses all day today and felt pretty good, even though the weather was cool and rainy all day. That type of weather usually effects me in a negative way. My bones and hip get extra achy and often can’t entirely straighten my back all the way up … but I could today!

I received a few emails about my risking the flu shot. While it is true that I never in my life gotten a flu shot, it comes highly recommended by the docs at the Proton/Cancer Center. Why, is the question I need to ask. If it’s because they have them, then there’s a good chance that I won’t except it. If it’s because it’ll effect the treatments in some way, then that’s another story. I guess I’ll make that judgement at the last minute.

Tomorrow I plan to pack up (my stuff), and be ready for the trip. I filled the Toyota with gas today, checked the oil etc etc. we’re ready for traveling! This first few weeks won’t be too bad actually. I’ll be leaving on Monday and back early Friday afternoon, then I have a 3 day weekend because of Columbus Day. Yes, remember these first treatments are not actual proton treatments, they are in preparation for the proton, so missing one is not so important. Then, that next week I’ll be leaving on Tuesday and so they’ll both be short weeks. After that, it goes full freight, straight through till mid-December.

I did some research today on the color of “ribbon” that’s used for bone cancer. You know those ribbons you see … like the pink ones for breast cancer. Well, I believe I found that yellow is the ribbon color for my cancer.

I’ve pretty much decided to go for the tattoo. You know, it really is something I’ve always wanted to do but have never been able to decide what to get. So this is a great opportunity to do it. It’s gonna happen … I’ll post a photo of it after it’s finished.

Futurama:

Here’s what I’m thinking about for a long range plan. Let me define long range as the next 6 months because really and honestly, that’s about all I can see into the future at this time. It’s a funny thing, an odd thing, I used to think about 5 years out, say in a business plan or project, and be able to envision that clearly and work toward that goal. But I can’t do that any longer, it’s not only that I can’t think about that, but I literally can’t see it any longer. Strange but true, about 6 months at a time is all I can see and imagine at a time … so that’s where I’m coming from.

After I finish all these treatments it’ll be somewhere near mid-December give or take a week. At that time, I want to take a week off , and make a honest judgement of what I feel like physically. I’d like to stop all the pain killer meds, all the doctor appointments and anything thing else that’s related to my condition. Really get a feel for what is left of my body, how much physical work it can handle, my mental state, a full evaluation of me.

Then, do some research on how, ideally, I should be living as a cancer survivor. By this I mean, in a best case scenario, what my diet should be like, if I really need any medicines, if I really need to go back every 3 months for scans and x-rays, all that kind of stuff.

Now you might think, “what the hell!, you went through all of this for what?, you don’t even want to return to get scanned again?”. Well, there’s a clear thought behind that. Truth is, after receiving these treatments, there is really nothing else that can be done. They’ll either work, or they won’t. And so, what is the purpose of finding out they did or didn’t work? … Will it really make a difference? It might to Bluecross or something, but won’t to me. I don’t like to waste and really that would be a huge waste. I’ll know what’s going on in me by default anyhow. Since there’s not much left on the treatment table to choose from, I honestly don’t see the need.

Now if I read something new has been started or something like that, that would change it … but at this time, there is no other options to choose from … so why?

Anyway, I’d like to take a good assessment of what is and what’s not working. From that point, change my life to get as much out of it, for as long as I can. Whatever that means, I’ll have to deal with it. It may mean my diet totally changes, my work habits change, my driving and getting around changes … I don’t know, but whatever it is, I’ll try it for the next 3 months and we’ll see how it works. That’s the 6 month plan.

Today was my last day of work in the office for approximately 3 months, from this point forward I’ll be working remotely (telecommuting) from Boston. I am thankful for this because I feel it will help keep my mind occupied while receiving treatments and living mainly away from home.

Monday’s the big day, this weekend I’ll be packing and getting things ready for the start of the Beantown experience. I plan on traveling out toward Boston around mid-day, as to get settled and be ready for early Tuesday morning.

I’ve always wanted to get a tattoo, but have never been able to decide what I wanted on my body forever. Now maybe I know! Depending on what I end up with for Proton Power T-shirts designs, I will either get a tattoo of one of those designs, or the very simple symbol used for positively charged hydrogen particles, which looks like this (H+).

Before I do that of course, I have to ask the Doc Delaney if there is any increased risk of infection due to the treatments. Which also reminds to ask about flu shots. Last time I was in Boston, they highly suggested I get one. I actually went to my family doc today but forgot to ask him for one.

I updated the SPOXTalk websites message about being temporarily closed and that no new shows are being produced until Jan.2010. At that time, after my treatments are completed and the holiday season is over, I’ll decide what to do with it. I am getting very “itchy” to go back on the airwaves … and if I have the energy, I’m going to do it, so get ready Dave J. and William B., I’ll be looking for new material around that time.

How am I feeling physically? This week has actually been pretty good considering the situation. It’s certainly not getting any easier to get around, but I don’t feel like things are getting any worse either. Hopefully, the deterioration of functionality will slow down as I start getting these treatments. That would be wonderful. If I can manage to stay in a similar condition as I am now, I can see the future of continuing work and life not so different then I’m experiencing now. I’d be happy right there. Even a little worse is OK.

With a little luck, I won’t be on a steady diet of pain meds, I think that will help too. We’ll know in a few months how this will all pan out.

How am I feeling mentally? Well, I’m excited about getting these treatments, but at the same time I’m torn about leaving all things behind in Vermont. It’s a tough thing to do, and while 3 months isn’t by any means a long time, it’s long enough to say I’ll be missing all the routine things in life. Yes, that includes family and such.

I don’t know if I’ve showed this image before on the blog, but this is a picture of the actual machine I’ll receive treatments on at the Francis Burr Proton Therapy Center at Massachusetts General Hospital. This is the real thing, in the real room where I’ll be. They say that 80% of the people that receive this treatment, found the information about it on the internet! … that’s certainly true in my case. The average cost for a hospital to setup with this machine and all the imaging equipment that is also required is 100 million dollars!

There are currently 4 of these machines running in the US and 4 more either under construction or in the planning stages. A total of 22 machines worldwide. Have I been lucky to get treated … you bet I have.

Here’s a link to a “flash presentation” about proton therapy. It is 5 short pieces that take about 5 mins to watch. It’ll give you a good idea of why I choose this instead of traditional surgery.

http://www.mpri.org/flash/presentation.html