Chondrosarcoma – ah shit, bob's sick

The last two days have been crazy! So many things happening on the home front. At the least I can say that my cold is finally clearing, and that I’m begining to feel much better.

The weather here in Nahant has been absolutely beautiful too! One of the nicest Novembers I’ve spent in a long time.

Treatment has been going very well (which I’ll elborate more on in this evening’s post), and besides the cold thing, I’m really starting to feel pretty well.

Yet another fine day of at treatment … we’re on a roll! I continue to feel excellent and am more confident then ever that the rest of treatment will go smoothly. Quite a few folks have sent emails recently and I’d like to thank all, please know that I’ve read them and will reply asap. I also want to say a special thanks to Jack and Arlene M. for their lovely email, and to David P. of Midweek Politics for stopping by and reading the blog, and emailing me today. Those of you that know SPOXTalk radio have heard David’s show many times, and we’ll be starting them it up again sometime just after the holidays.

I’d also like to send “all my best wishes” to my dear friend Ginni G. in NJ, for successfully pulling through her surgery with flying colors and is about to leave rehab on Saturday! DRS Dave … thanks so much for card … and I totally love the business type cards you sent me!

Thank you to Jackie Richardson for her heart felt email, it was appreciated.  Best of luck to William B. in Vermont tomorrow!  Rose M.  in Sweden … I owe you an email  … and to everyone else that’s been in touch this week … thank you all,  so very much for your support.

Howard C.  I just love your comments, YOU are the powerful writer!

Oops …and a very special “hello and I love you” to Alberic and Sher!

——————————————————————-

I’m beginning to realize that having one of the rarer cancers is not all it’s cranked up to be, there are advantages and disadvantages to deal with, not that either one is necessarily better, but there are differences in treatment, and availability of information. If I were you, and was going to get cancer, I probably go for one of the more common types. Your chances might be better in the end! … but then again, I’m not really sure about that.

Besides the obvious fact, that the research dollars aren’t there for rare cancers because they don’t effect enough people to merit spending the big bucks on, true awareness isn’t there either. As a result of that, there are probably less, both current and future doctors, studying a lot of these cancers. I also have to assume that the huge drug companies are encouraging and dis-encouraging certain types of studies too.

But there’s other things too …not only doctors, but people awareness too. When I was first diagnosed with chondrosarcoma, no one I knew, not one single person, ever even heard of it, let alone knew someone that had it, or knew anything about. I don’t even think my primary care physician had very much knowledge about. Now he does of course, but back then, he just hadn’t been exposed to anything like this. It’s rare and unusual, what do you expect? He’s an absolutely fabulous doctor otherwise.

I don’t believe any doctor can really keep up with all that’s going on in the medical field. Even so called specialists have trouble keeping up to date, unless you’re a ground breaking doctor of some sort. There’s no way, to know all that’s going on, simply impossible. Which brings me to the point … if you’re lucky enough like I was, to be put in touch with a doctor that specializing in something even close to what you have, you have a chance of getting him interested in your case. That’s sort of what happened to me.

I wrote an email to a doctor that I’d never met or heard of, recommended by a person that just happened to find this blog when I first started it (Bill N.), whom is also still reading it, by the way … and I took a chance that Doctor Delaney would be interested in my case enough to take me as a patient.  Now you might say to yourself “well of course a doctor would take you as a patient, that’s his money!” … but that’s not entirely true. Doc Delaney and the Proton Center aren’t out there looking for business, they have more then they handle at any given time. Machine time is incredibly valuable, it’s literally life saving for many … it was for me. There’s a waiting list for these treatments longer then anyone wants to admit to.

There are only four of these centers in the entire country, and there’s a waiting list for every one of them … and a long list. The reason they took me to the top of that list, isn’t that they liked my name, or eye color … no, no, no … it’s that the cancer I have is rare (one advantage), and there-fore they get a chance to see what their science can do for the tough stuff.

They can “wack” a few hundred cases of prostrate cancer in a week and make a lot more money on that, then on me … but my case holds a special challenge for them. Cases like mine are the reason many became doctors in the first place. These doctors are scientists too, and they don’t often get the chance to study rare things. I rarely get to see the nurses … I get to see the Doc himself, every day after treatment. I’ve seen him stop the nurses from coming to see me, and do it himself! … now that’s unusual.

So in that sense, a rare cancer can be an advantage, if … you can find the right doctors. Then, there’s an advantage to that again, because you end up with the best of best, wanting to work on you, and study you, because they don’t necessarily know when they’ll get a chance like this again.

OK, now lets that think about this for a moment … another one of the down sides or disadvantages to rare things, is that you don’t really fit into any of the pre-thought out categories of care. What I mean is, you become a big challenge for things like technicians, nurses, aides. You don’t require the normal or routine they’re accustomed to working with. You’re an “odd ball”, and that’s not always a good thing, odd balls can get tossed aside too, or rushed through because you take up more time then others.

Your problem is special, so you end up asking special questions, which may require special answers, which in turn require special research … you can be a real “pain in the ass” for a busy hospital. I know that sounds incredible … but it’s true. Hospitals, like any other business, only work efficiently and profitable if they get operating in a smooth way. That’s where the money is … and yes, they have to make money that’s they stay in business and grow.

MGH is in the middle of building an entire new section of it’s campus, a huge addition to help spread the work load, take more patients, make more money, and so on, and so on.

All said and done, I’m not sure where I’d rather be sitting, with a more common cancer or a rare one … but I am sure, that the level of attention, I’m getting from my doctor, is the absolute best, a person could ask for.

Hey, your best bet …. stay healthy and stay out of this place if you can help it.

Proton Center At MGH, Grove St.

Today was another fine day,  went for treatments around noon time and Doc grabbed me out of the waiting room as he was passing by, and we went for an unscheduled, basically informal chat, about my case.  I told him I was feeling much better then I had been in the past week. My appetite was back, I’m sleeping normally, and that my energy levels were returning, or at least that’s what I was feeling like.

Again we went through the verbal process about expectations, and I clearly stated that I was fully aware of what to expect. I told him I wasn’t looking for anything more then to walk out of the Proton Center feeling no different then when I walked in, but knowing that the cancer was, for the time being, not growing any worse. He nodded his head as if to say ‘that’s right’, and then gave me this information.

“You know, a lot of people say they ‘beat the cancer’, … don’t listen to them, they didn’t. You never really beat cancer. It’s equivalent to being on a sinking ship, getting rescued, or making it back to shore, and saying ‘I beat the ocean’ … it’s just not really true. We never beat cancer, but we can hold back, and sometimes for the rest of a persons life”.

I thought about those words for the rest of day though. Then we proceeded to talk about the future, and how the continuation of testing was going to be done. He took out a schedule he had already made, and began to explain that several types of scans would be needed every six weeks for the next four months, and then once every three months for 2 years, and then once every six months for two more years, and if I make it through that …. once a year for life. That’s not bad.

I need to have several types of scans done beginning at the end of treatment, Position Emission Tomography, CT scans, MRI’s and X-rays. Without going into a huge explanation of these about these scans, the important one seems to be the P.E.T. scan. It measures blood flow, oxygen use, sugar (glucose) metabolism, and I believe nitrogen, which tells the Doc if the tumor areas cancer is currently active or not. Traces of glucose and nitrogen in the tumor are not good things for me, that means it’s still snacking on my blood and possibly growing … not necessarily growing … but at least alive. That’s the “got cha” in my case.

He also told me the reason I had IMRT scans first was, that he didn’t want to wait any longer to treat me. They are not as effective as Proton for this type of cancer but, much better then waiting with nothing happening. The Proton machine is in such demand that booking time on it is almost impossible. Only four in the US at the moment, with 4 more being built or in the planning stages. The demand is so much higher then the four hospitals can even start to cover. After being treated on this … I can understand why. There is no effect at all … so close to Star Trek medicine you just wouldn’t believe it.

The last thing we talked about was staying or laying perfectly still during treatment. I thought I had been, but he showed me a scan taken of the target area outlined in blue, that represented the target to be hit, the same picture also had a red outline, that represented where they actually hit with the protons. They were not aligned, less then two millimeters off. He said that was good … but hoped we could do better. I suggested that they have a low bell ring a few seconds before firing, so that the patient actually knows it coming, I could hold my breath for that 3 secs while it releases the protons. He looked at me and said “hmmm” … and that was that.

My point was, that there’s no way to know when it’s actually releasing the protons at you … no sound change, no lights flashing … nothing, Simply breathing in and out can cause  5-6 millimeter fluctuations in the height of your body to the barrel … makes sense to me. Give a warning.

It was good to hear Doc even mention testing plans five years down the road … I must say, it lifted my spirits to know, that he was planning, that far in advance. He also showed me how to read the scans that he gave me last week. Unfortunately, I left the DVD in Vermont so I can’t post any this evening.

So, all and all, it was a good day. I feel excellent, I had the energy to work a full day, even though it was broken into two parts, a few hours apart. Appetite was good, sleep pattern was close to normal … what else could I ask for? Maybe a lower cell phone bill?

Ah! … almost forgot… I also asked the technicians what those big glass or clear acrylic molds were. There’s a rack of them in the proton room, and they’re in the shape of the tumor. They really look like something from outer space …. strangest looking things. She told me that they were resistors for the protons. Here’s how it works:

The protons come out of the barrel at a known speed, and will travel for a known distance without resistance at that speed. The glass disks are carved out to varying degrees of depth, in the precise shape of the tumor or target … exactly. So some protons are traveling through 3 inches of acrylic and others are traveling only through an inch. When the protons leave the barrel, hit the disk, it slows them to the proper speed, so that they reach the target and detonate is exactly in the right spot. This way, the entire tumor is hit in a three dimensional way, all at the same time. Amazing technology, no room for error.

On the way home, I turned on the radio and heard a great old song I hadn’t heard in a long time. It was by a band called “Rare Earth”, and the tune was:
“I Just Want To Celebrate, Another Day Of Living” … I sang all the way home!

A picture for Alberic!

Does anybody know this guy? Hi Alberic!

Today, treatments went well again, proton is without a doubt, hundreds of times nicer to deal with then IMRT. After spending the weekend without any treatments (as always), and then the last few days with only proton, I can truly say, that I feel better now, then at any time since I’ve started treatments in Boston.

As a quick explanation of the differences in IMRT and proton treatments, it kind of goes like this: With IMRT, they set you up, run the machine and a 2 or 3 hours later you get sick with nausea and all the other stuff. It also takes two or three days to get it out of your system. On top of this, you have whatever pain you when you walked in the door … so basically, you’re never feeling good.

With the Proton treatments, 5 -10 minutes after treatment, I get some swelling and pain in the tumor for an hour or two (take a pain killer), but then, it’s completely gone. This is making all the difference in the world in my ability to work and function on a decent level. I’m really excited, hopefully it’ll stay like this.

If it weren’t for the pain in my hip, that is caused by a large piece of cartilage, that the tumor has grown, I’d have to say that I’m feeling close to 100% normal. What a relief, I was thinking that I may have to spend the rest of life feeling like I did this past week.

Proton, at least for the moment, is definitely doing the trick. This I can live with, literally.

I wish I would’ve started off with these treatments instead of the others, but I have to assume they were necessary to have. At this point it’s been six days since I’ve had no IMRT and I’m starting to feel good again!

So, I really have to hand it to Doc, he was correct in saying that proton would be a lot easier and gentler. He was right.

When I woke up this morning, and my head was clear, and I didn’t feel sickened or nausea-ated, I thought the dissipation of radiation, is what was going on.

Now, if things can stay like this for the rest of the treatment schedule, I have a chance at completing some of the tasks I set out to do while being in Boston.

Self Examine: Part One

It’s Monday again and another week of treatments has gone by.  This week and at least five more to go, and hopefully, all this will start to calm down and some resemblance of what life was, will start to return. That’s a good thing, because I’m getting mighty  bored with traveling back and forth, and never really being able to settle into anything.before it’s time to go back and start over.  I wish I could say that everything was going well, but to be honest, it seems to get more and more difficult each week.

Difficult, may not exactly be the right word to use here, but for now, let me see if I can understand, explain, re-live, recall,  the thoughts and events that brought me, to where my head is at, at the moment. It’s a strange place and not a typical (at least I don’t think it is), set of my normal thought processes that I’m using lately.  Not to drift from the subject, but as a side observation that I’ve made, … cancer, not only effect your physical health, but your mental well being too. Surprised! … right?, I don’t think so, of course it does, how couldn’t it?

Now, I don’t believe I’m mentally unstable, or unstablizing (ok, those that know me well, we can make a joke here, and declare “well how mentally stable was he to begin with?”, but I’m talking standard fare, for me), but I am believing, I’m showing, signs of stress, depression and possibly fear, as in “fear of  knowing what the future holds”.  Stress, Depression, Fear … those are the words I want to think about.

 Now should I say right here, before this goes any further, that I’ve taken One(1) Vicoden (early in the day), One(1) 30 MG of morphine, and a few tokes of medical marijuana, a typical evening’s  snack for me since they did the biopsy. The “pot” helps the morphine work better, and it also helps with the nausea that often accompanies morphine.  Morphine in itself, will make you sick if you’re not careful if. I don’t get “high” from it, it simply brings me back into a functioning state.

 The current pain in my hip or tumor is constant, twenty-four seven, never letting up for even one moment. Without relief, I wouldn’t be able to concentrate on anything but the pain, the morphine subside that pain, and therefore allows me to function normally or at least, close to it.

 Now when I say pain, the closest thing I can think of, that all of us have experienced at one time or another, is a toothache, a pretty bad one, maybe not the absolutely worst one you’ve ever had, but a throbbing toothache that just won’t let up. That’s about the degree of pain that’s in my hip at all times.

 There is no high from the morphine, just relief. The “pot”, relaxes the rest of my body, and allows the morphine to do it’s job more effectively and efficiently, while using a lower dosage.

 So, with this being said and understood, when I say that this past week was difficult one, and mainly because of the effects that the IMRT treatments were having on me. Monday, Tuesday and Wednesday were tough days, the increase in treatment levels brought on nausea in a way that’ll ever felt before. I was as sick as I’ve ever been. Remember, this is on top of the hip pain. A double whammy you might say.

 Now you’ve got a damn good toothache, and you’ve eaten some bad food too! So along with the toothache, you have nausea, diarrhea, and cramps. Ever feel like “you just want to die” … get the picture?  Not a pretty thing. However, you do get through these periods, and when they’re gone, the constant pain in your hip, may be back, but you almost welcome it as a simpler version of what could be.

 OK, we were talking about stress, feeling like this, never good, but sometimes worse, causes stress to build, slowly over a period of time, in your body and mind. Recognizing it, isn’t always easy to do, and before you know it, stress is overwhelming and running your mind. I can feel myself, with ever increasing stress levels,  building slowly.

 Traveling is stressful, treatments are stressful, constant pains are stressful, schedules, visitors, food, bills, money … yikes! See what I mean? Yes, I do have a level of stress in me and I’d have to be crazy not to.

 So yeah, if someone asked me if I were stressed from having to deal with this cancer, and all the stuff that goes along with it, honestly, I’d have to answer “yes”. Am I stressed, not to the degree of jumping off a bridge or anything like that? … no, but I am under stress, and I understand that. Not that I can control it any better, but I understand, that I am. Do you?

 Depression, that was another one of those terms or words that I wanted to try and measure the level of, in myself. Well, … where do we start this ? I guess for one, we’ve already determined, that I have some degree of stress, so that’s depressing in it’s self, right?

 Now there’s other stuff going on here too, there’s a lot to understand about depression and I’m not sure I’m qualified to even talk about this … but then again, what the hell, it’s only me I’m talking about right? … well, unless you think other cancer patients may experience bouts of occasional depression. Do you think so?

 To be continued tomorrow-ish … btw, treatments went well today  J