Chondrosarcoma – ah shit, bob's sick

Birthday wishes continue to come in … and I continue to thank everyone for them. What a wonderful feeling

Also, several folks have found oncologists in my area … which is amazing because i did some searching before posting that and couldn’t find one. I thank all you that sent suggestions and will start investigating this coming weekend. My friend Rose from Sweden even found one! Now thats amazing

I’m trying out some hats for cancer patients that Sher ordered for me online. They are hand-made by a cancer patient in all kinds of styles and colours. I have tried three of them, and all of them are very comfortable. Now I don’t think, I’m quite using them for the intended purpose which is to cover your hair during chemotherapy … however, I do use them to keep my head warm while sleeping.

Since this cancerous adventure began, my head has been cold at night and these hats are definitely doing their job. They’re inexpensive, comfy, and if you’re in need of such, it’s certainly worth it. She fast, dependable and down right honest. Here’s a link to her web site: http://www.cjhats.com/

Topic Change:

Yesterday they told me not to get the area where I’m being treated with protons wet! Like in the shower or bath. Yikes, wish I would’ve known that four five weeks ago. For some reason water seems to aggravate it. Of course it’s almost impossible to avoid all contact with water … but I’ll give it a try. I also have to assume that it would require full healing before getting my tattoo placed there, of course … only common sense.

Topic Change:

I was supposed to eat at an Ethiopian Restaurant this eve but … I couldn’t find a place to park my car! … within a block or two. Unfortunately, I had to leave … but will try again next week.

Topic Change:

I met with Doc today and he seemed excited about how things were going. His plan for the future has been simplified and is now to finish treatments this coming week and then schedule the tests and scans for a return trip in about six weeks. That’s it … that simply.

He did express some concern over the skin on which the protons have been passing through. Unfortunately, this does cause damage to the skin and is going to get worse before it gets better. The thin layer skin that covers my spine is pretty much toasted and he said he expects it to breakdown within a week or so. In other words, it just can’t take any more treatment. This is what I’ve been trying to photograph.

They gave me some special bandages and suave to apply when it starts to blister, don’t rub it, don’t scrub it … simply let it breakdown and heal it self. Keep it clean by covering it. Should take about a week to ten days. Also suggested if it gets worse then he expects to email him some pictures and he’ll make suggestions via email or telephone.

All and all, this is generally good news, if that’s all the damage I walk away with, and we’ve really put this tumor on hold … then I claim success.

Today’s treatment was a little funky though. For the first time this week, they brought into the treatment room on time. I, and they, assumed the proton maker was working just fine. They set me on the board as usual and spent the typical fifteen minutes lining my body up. They ran the scanning process first as always, this gives the computers a comparison to go by. If something isn’t correct, or I’m not lined up properly, the proton machine won’t run … this way there can be no major misses or mistakes.

After the scan, they pulled me back and put in the acrylic resistors and brass barrel heads and sent me forward for the firing of the protons … except nothing happened. It appeared that the pc that runs the software that controls all this got hung up. So they told me to sit tight for a minute and then rebooted it, and tried again … nothing.

Then the technician came over and said, another computer crashed and that I should get dressed and go wait in one of the nurses rooms while they attempt to fix it. No problem, I got up and left the room, but as I passed the corner I saw Ethan C. come running down the hall towards the proton room. If you remember, Ethan is the dude that gave one of the seminars on Proton Therapy I attended (I have one of his seminars on the audio page). As he approached I jokingly, (and with a smile) said “Hey man, what the hell kind of software are you writing that crashes in the middle of a treatment”.

He looked at me stunned at first, and then realized I was smiling and smiled back and said “come on, follow me”. We walked back into the treatment room and by this time the entire network had crashed or locked up. It’s a network that only runs the proton machines … but there’s sixteen computers networked together and they have to be rebooted in proper sequence in order to for everything to work properly. So after some fast, orderly rebooting and bingo! … things were back online and ready to go.

I got my treatment ten minutes later and I was on my way!

So, with all that excitement, I decided again, that I’d wait for the weekend to ask Sher to take the photos so that we (yes, me too) can see what proton does to skin after many high powered treatments.

Tomorrow I’m on my way back to Vermont, hopefully things will run smoothly and I’ll be able to leave town around noon time!

Hey … only one more week to go!

I just can’t believe it’s December already … where the hell did summer and fall go? Maybe I’ve been just too busy to see it pass by. You think so?

Well treatment the last few days has been ok … running later then normal, but fine. It appears that every time they (the proton center), shut down for a few days (like over Thanksgiving), that it takes a few more days to get things running smoothly again. Not sure why that is, but there’s definitely a pattern forming.

I’ve been trying to get a photo of my back taken but the nurses at MGH have been so busy since I’ve returned that I haven’t seen or felt an appropriate time to ask one of them to do it. And somehow, I just can’t get the camera lined up properly myself.

It’s an interesting mark that the treatments have left … which I assume will dissipate in time, but definitely worth archiving. The best I can tell is, that it looks really nasty … but it really doesn’t hurt … maybe like a light sunburn. Looks much worse then it feels. Otherwise, I’ll ask Sher to photo it for me and post it over the weekend.

Treatments just gets harder to deal with every week. It’s not that the treatments are worse, or that I feel any sicker. It’s not that my living quarters aren’t great … because they’re the best. It’s not anything like that at all … what it is, is that waking up everyday to face the same thing over and over is getting old. Imagine if you had a doctors appointment … everyday, and that it took hours to complete … wouldn’t that be a pain in the butt? Somehow it just seems to absorb my entire day, energy and life.

Of course, most folks coming through the proton center are only getting a few treatments. Many are also getting chemotherapy or some other radio therapy too. That’s one of the reason that I seem to never see the same people here too. I don’t think anyone here at this time is going for the full 43 treatments like I have … or if they are, I haven’t seen or met them.

Tomorrow I expect to see Doc D. and have a full queue of questions for him about the near future.

Tomorrow night I’m hopefully having dinner at a small place called Addis, Red Sea. It’s an Ethiopian Restaurant on Tremont St. in Boston. I’m excited about that! … sounds like a fun place to eat. Here’s a link to their menu. http://www.addisredsea.com/

Well, that’s all I have to post for the time being … isn’t that great! I’m feeling pretty well considering, and soon I’ll be back in Vermont … and after that, only one more week!

Monday treatments are done with … and none the too soon either. What a strange start to the week. I headed out for Boston a little earlier then usual because I needed to stop at the Auto Dealer and get the Toyota it’s eight thousand mile check up. Besides that the “routine maintenance” light was on and I didn’t want to chance driving it to Boston without having it checked out.

I was at the dealership for about twenty minutes, when they gave me the car back and said it was finished. Great … that left me a little extra time, and I could now take my time going to Boston.

As I got out on the highway going through New Hampshire the traffic started to build and slow down. I made it only about ten minutes before my appointment time … I thought I had at least a whole extra hour, plus … but it must’ve gotten lost in the traffic.

The proton center was running late when I got there. Trouble with the cyclotron caused me to wait an extra hour and a half. Mainly caused by being shut down for four days. Now, by the time I’m getting out of MGH and Boston, the rush hour traffic is built up and it’s pouring rain! … and I mean pouring.

It takes an hour and a half again, to get to Nahant (which is normally a twenty minute drive). Then, finally I get to the house, and my key won’t open the door … and it’s still pouring down rain. After trying to get the door open for like ten minutes and getting soaked and chilled to the bone, I decided to walk around the back and see if another door might be open. Yep, sure enough, I get in.

Actually, it was almost comical in a sense … a day totally gone awry. So, somehow it ended up taking me about ten hours, to get to Boston, get treated, and get to Nahant … whew, glad its not like that every week! Gotta keep that sense of humor going. I hate the cold rain.

All is calm and I’m warm and dry now J

Subject Change:

I want to thank Ms. McCruddy for her heart-felt email, and for following this blog. I wish her and hubby all the best. In the right-hand column I placed a link to her blog called, Off the Deep End: The Crud Chronicles. Another true, ongoing story (diagnosed in early November), about chondrosarcoma. Check her blog out.

You know, at least once a week, since I’ve started this blog, I get an email or phone call from someone that’s been touched by a life changing situation, like cancer or brain tumor or something. I find it amazing that so many people are using the internet to search out information and educate themselves, and sometimes their doctors, before making decisions. I think that’s great, because no doctor knows it all. I believe their intentions are well meaning … but there’s no way, they can know everything that can go wrong, in your body. It’s great to have a research tool

I’m proud of this blog for that very reason … it has helped many people find a realistic online experience and straight-forward information about proton therapy and chondrosarcoma. Because I’ll tell you, there isn’t much out there that actually useful.

Subject Change:

Sometime this week I hope to be finding out some information about what the near future holds for me. I have a few questions for Doc about when I’m actually going to be finished with not only treatments, but with the scans and tests afterwards … in other-words, when am I free?

I am in search of an oncologist in my area of Vermont, although I have doubts about finding one here. Our phone book doesn’t even list it as a category! Which leads me to believe that I’ll be searching through New Hampshire, New York, and Massachusetts for one too.

The idea behind the local oncologist, is to have someone close by that can communicate with Doc Delaney … simply saving me extra trips to Boston for scans later on.

For those that don’t know what an oncologist is: He/She is a physician with advanced training, experience and education that provides them with the skills necessary to examine, diagnose and manage or treat cancerous tumors.

Simple enough right? Yeah, sure. Not as simple as it sounds.

I forgot to ask Sher to take a few photo’s of my back so that you can see what 35 treatments with a proton beam looks like. If I can find someone at the hospital to do tomorrow, I’ll post them tomorrow.

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.

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.