Chondrosarcoma – ah shit, bob's sick

I felt like cooking this evening, besides wanting to give Sher a break (she’s been doing a lot of the cooking lately), I felt like something different, what I call “adult” food. Sometimes after cooking and eating simple meals (especially when Alberic is around), I tend to crave something different. Besides, we all too often fall into the habit of cooking and eating the same few dishes. Same can be said for eating out. But every now and then I’ve got to have that “something different” taste. Tonight was one of those nights.

I ran down to our local butcher shop and bought two boneless pork chops, stopped at the farm stand and grabbed some wonderfully fresh picked sweet corn. That is one thing I have to say about Vermont, during the season when fresh corn is available, Vermont has some of the best sweetest corn money can buy.

I picked up a few more things and made my way back to the house.

Prep in the afternoon: Now this may sound like a complex recipe but actually it’s rather simple and doesn’t require much time to prepare and almost no time to cook. Of course that’s one of the great things about most Asian cooking styles, they cook quickly … which in turn, if your food is fresh and healthy, you end up with a fresh, delicious, healthy meal with limited effort.
So prior to cooking anything, I took the time to prepare all the veggies for stir-frying. The prep, is key for this type of cooking.

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I simply can’t believe it’s been over two weeks since I last posted here! Somehow with summer being finally here, it seems time is slipping by faster and faster. Where I thought I’d have lots of free time to write, program and draw, it just seems that the season has absorbed all that time in a different way than I expected. That’s not necessarily a bad thing, but more of an unexpected thing. It’s just crazy the way time is flying by and somehow more of it is being used up on things like lawn mowing!

Over the last week or two I’ve several emails, phone calls and what-nots, asking how I was doing and just general chat … so I figured it’s time to write a little something and let my world know that I’m not only alive, but doing pretty well lately.

In general, I’ve been feeling pretty good, not much of a change, which in my case is a good thing. I can’t say that I’m living a pain-free energetic life, but I am doing what I consider reasonably well. The meds continue to rob me of energy, but allow me more motion then I’d have other-wise. I consider that a fair trade. Now and then, especially when I don’t get enough sleep, I’ll spend a day or two “down in the dumps”, but it seems to pass by as soon as I catch up … so that’s understandable too.

I’ve been swimming quite a bit, trying to wheel chair at least a mile every night after dinner (except the past few days because of the heat), and continuing to work around the house every chance I get. That’s the extent of my exercise which isn’t bad for me. My daily diet hasn’t changed much except during the heat-wave, which I’ve experienced my whole life … when it’s hot, I eat less. I think most people do that so I don’t find that surprising.

This past week I went to our local Blood Lab, and got all my blood tests out of the way, next week on the sixteenth I have an appointment with my primary care physician, Dr. G. Clay for a general checkup and discussion about pain management. As I stated before I am considering medical marijuana for boosting my appetite, pain control and sounder sleep.

On the twenty-second of July, I return to Boston for MRI and PET scans to see if there has been any changes in the tumor or cancer.

I don’t feel like there has been any change for the better or worse. I’m pretty much “in tune” to what I’m feeling these days and intuitively I don’t feel anything is happening. But I agreed to continue to be watched … and so, away I go.

Currently, it seems that the grip that chondrosarcoma has on me, has not continued to worsen. What I mean is that the pains and discomfort that were there last year when I went for treatment are still there but, they are not worsening and that’s important for me. I already have a hard time walking and maintaining any reasonable level of energy. I consider myself very lucky in the fact that I didn’t totally lose mobility or any of the other functions that were in jeopardy of being lost. I pulled out of what could’ve been a total disaster pretty well. I didn’t take that huge hit that often brings people to a state of not being able to care for themselves … and for that I’m thankful.

Will I be so lucky next time? … who knows? but hopefully it’ll be a few more years before I have to deal with it. So in a nutshell, I have to say that for the moment, the proton therapy that I received seems to have bought me some of that “time” I was looking for.

So what else has been absorbing my time?
Well, last week Alberic and I hooked up a little irrigation pump for our garden! For those that don’t live on the east coast of the US, we’ve been experiencing not only drought like conditions, but a tremendous heat-wave to boot! So last week we set up a water pump in one of our ponds and pumped water through a series of hoses, uphill to our vegetable garden.

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Somehow I thought I’d have more time for writing once I dropped the responsibilities of the radio shows and all that went along with that world. Boy, was I wrong! Maybe it’s the summer season, maybe it’s taking a bit more R and R … I don’t know, but whatever it is, time just seems to be flying by.

For those interested in our recent Boston trip, there are lots of photos here: http://picasaweb.google.com/116405034524500132179

I had and still do intend to write more on Boston but simply haven’t had the time to do so.  

One of the things that’s been keeping me busy is that I finally got my wheelchair … and let me tell you what a difference it made. I have planned a post (with some photos) about it for this weekend.  Hopefully Alberic, who took most of the photos on the Boston trip will help me take some pics of the chair and explain the difference between a well-made wheelchair and the typical chair you see at most hospitals.

Last weekend I went to the mall in Rutland …. and what a pleasure! Now I’m personally not very big on malls, and there’s between little and nothing I want to purchase from them … but it was great to be able to take Sher and let her go do some shopping … which is something she does  enjoy. Earlier this evening, we went out and walked the dog together … something I haven’t done for almost a year. OK, I didn’t walk, I wheeled … but still, it was great to be able to go along.

This weekend is also Father’s Day and we still have to do a bit of celebrating for Alberic’s birthday … so it’s going to be a busy, but fun time. Al’s last day of school for the year was this past Wednesday, and next year he’ll be going to a new school.

We finally got all the light fixtures replaced in our house from last winter’s electrical disaster.  Can you believe it took this long? I have to admit that this time, it was not the insurance companies fault for slacking … we (well, mostly Sher) had a really, really hard time finding replacement lights. I know that sounds crazy especially since we do a lot of shopping online, but it was very challenging to find the right things. Crazy, but we’re both happy it’s finally finished. They are installed and lighting up rooms! Life is wonderful!

I’m also beginning to do research on the possibility of using medical marijuana. It’s an incredibly complex set of rules, regulations and hoops to jump through but the rewards can be extremely helpful. Let me explain how this could work for me … or better yet, let me leave for my next post. Ohhhh … so much to write about.

It’s getting late and I have to work tomorrow morning, but over the weekend I’ll try and write a clear explanation of why I want to try taking that route, even though it’s definitely not the easiest way out of the daily pain and nausea issues I face. It’s bedtime for me …. good night Alberic.

Just a real quick note:

 We had a great weekend, along with perfect weather. We managed to get quite a bit done around the house, and a bit of entertainment time too! It was a much needed weekend. I even managed to catch up on some much needed sleep … and that was fantastic to say the least.

This week is going to be an exciting and busy week. Tuesday and Wednesday it’s work where we’ve been extremely busy, and then on Thursday we take off for Boston for a graduation at M.I.T. and a little bit of celebrating of Alberic’s twelfth birthday.  Hopefully with a trip to Boston’s Science Museum in there somewhere!

I’m feeling good, and looking forward to the trip to Boston. Hoping that getting around the city won’t be too difficult and this fantastic weather holds out for this coming week. Alberic is looking forward to seeing and being in some multi-story building. He’s always had an interest in city architecture, this’ll give him a chance to experience it!

Hopefully, I’ll get a chance to do a bit more writing before we hit road. I hope all you had a good holiday weekend too … and let’s all keep in mind what this holiday is all about.

Finally! the weather is just awesome here in Vermont …

For the first time since last summer I did some real yard work this weekend … well, I cut the lawn, and to be honest I wasn’t even sure I could do that until this weekend. Early Saturday morning I headed out the barn and started the lawn tractor up and took it out. The yard was full of sticks, rocks and other effects of this past winter, Sher walked around first and picked up as much as she could before I did any actual cutting. Team work they call that … and it worked out just fine.

We’ve made plans to put a small garden in this year too. Last week our friend Norman E. came over and did the tilling of the garden (thanks Norman), and over the next few weeks we’ll start putting in some tomatoes, herbs and just a few other things. We’re keeping it small this year so that our upkeep won’t be too intense.

This week I also finished swapping my Windows XP computer for a new Windows 7 machine, so for those that recently emailed me, be aware that it’s taken me more then a week to move all my files and programs from one machine to the other. Also, Windows 7 doesn’t really come with an email program, so I chose to use Thunder Bird email program.

Alberic returned from camp this weekend and appears to have had a great time. He’s growing up fast. Just the other day I looked at him sitting on the couch playing RockBand 2 and was amazed at how much older he seemed suddenly. Playing guitar, drums and even singing, which by the way, isn’t all that easy for an eleven (two weeks away from twelve), year old to do.

In two weeks we’ll be taking him (Alberic) to Boston for Mike’s graduation at MIT … I’m sure he’ll love that trip. He always wants to head to the city. Any city, I think he finds it exciting and very interesting to see the way other people live.

Work has been very busy and a few of the projects we’ve been working on are coming to a head. Which is great really, I love to see projects come to an end … especially when the weather gets so nice.

Personal Updates:
Somehow I’ve managed to gain a few more pounds back, which is awesome. I’m almostback to the weight I was before treatment and I’m guessing that’s a good thing. In general I’ve been feeling pretty good except for the exhaustion thing and I’m working on that.

I had been drinking a lot of coffee during the day and at work and some at home … but, over the last few days I’ve tried to keep it down to two or three cups a day and I believe it’s making an amazing difference in my energy level. Sure, coffee gives you a boost at the time you drink it … but then, there’s a big crash afterwards. I’ve found that drinking less coffee and more water is making a difference.

So while my energy level is still low, it’s on the rise and hopefully will continue to improve until I feel like I can get a full day in without the constant need and desire to nap. I don’t expect to rebound to the level I once was because of the medicine I’m on … but I truly believe I can do better than I am. Hey, it’s been a full four months since treatments … so it’s about time.

Although at the time of treatment they did tell me that the energy loss and other effects of the treatment could last for up to a year! Hopefully this won’t be the case.

So all and all, Sher and I have been doing pretty well and are adjusting to our new lifestyle. In July, I’ll be returning to MGH for another round of scans and a visit with Doc Delaney, and at this point I don’t have much to report.

Most of the problems I’ve had since I think I can attribute to “pushing” myself past the point that I probably should … but that’s me, that’s my way and I clearly understand the physical cost of pushing the limits. Actually, I’m still finding the limits and trying to adjust to them.

With a little luck this cancer will be calm for awhile and allow me to get some stuff done and begin taking the time to enjoy a little bit

Wonderful to have some free time to write too!

One last note:
I want to wish my friend Linda all the best with her treatments. Although they aren’t quite the same as I had, we still have a lot to relate to in our experiences. Hang in there Linda … I’ll try and bring some more lemon drops this week!

Oh and thanks to Loiuse P. too always wonderful to get your emails!