Chondrosarcoma – ah shit, bob's sick

One morning this past week on my way to work, I stopped at a local convenience store to grab a quick coffee before heading in. I usually keep my money in my pocket as opposed to my wallet, but for some reason that wasn’t the situation this morning, it was in my wallet. Not being completely awake, I took my wallet out to pay for my coffee, pulled a few dollars out, and half placed it on the counter while the young female clerk worked on getting my change.

The clerk, as she was handing me the change back suddenly smiled and blurted out, “that’s what I want … one of those”, and she pointed downward towards the counter near my wallet. For a moment, or I should say, that it took a moment, for what she had said to register, and then I still didn’t know or realize exactly what she was pointing or referring too.

I politely smiled back, … and then for a moment, my eyes and mind didn’t know where or what to focus on. It was only a split second, although it felt much longer and frankly, it was beginning to feel awkward. Well not really awkward but I didn’t want to appear stupid either!

I’m sure, for anyone that’s ever worked in that type store, that days can go by that are just full of funny, odd, weird, customer situations. I’d think you’d have to have a good sense of humor to work in the average convenience store .

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What a long strange trip it’s been … isn’t that how the song goes? I got back to Vermont this afternoon and not a moment too soon. I missed this place, my family, my house, my pets and everything else.

Although I am staying at a wonderful place in Nahant … there’s no place like home, there’s no place like home.

All kidding aside, the last few days in Massachusetts were much better. I got very comfortable in Nahant, the hospital docs and staff were all wonderfully helpful, and the knowledge that my family were fine in VT, really helped settle my mind.

I had a great stay at Nahant and am looking forward to returning. My hosts there are the best … the very best. I truly feel I have a home away from home. And that’s saying a lot really. I have been made to feel so much at ease there. I couldn’t ask for a more gracious host and I honestly mean that … a true gentleman.

I’m hoping next week when I return, that my schedule settles down a bit, and I have time to cook both of us some great “home cooked” meals. As long as my energy holds out … that is my plan.

I spoke with Doc Delaney after treatments on Thursday (actually that’ll be every Thursday that I have a pow-wow with Doc). He was concerned about a few spots on the the scans that run extremely close to organs during treatments. He said normally he would have entirely finished my treatment plans by now … but he is holding off and waiting to see how things go before finalizing plans. Even at MGH, I am a special case, everyone in the entire Cox Cancer Center knows me by name and always gives a friendly “Hi Bob” or “Good Morning Bob”. Amazing after only a week. I did finally ask Doc what the real name and statistics of my cancer was. He printed out a pathology report for me … and here’s the pertinent data:

REPORT STAUS: FINAL

CLINICAL DATA:

56 YEAR OLD MAN WITH LARGE RIGHT SACRAL BONE TUMOR.0

FINAL DIAGNOSIS MADE ON SEPTEMBER 17, 2009 AT 06:13:06PM:

RIGHT UPPER SACRAL MASS, BIOPSY (S-09-02089-A)

CHONDROSARCOMA, HYALINE AND MYXOID TYPE, LOW GRADE (GRADE1/3).

The rest of the report contains the Doctors names, case numbers etc etc.

Pretty crazy hey? Interesting stuff … and I’d been meaning to ask him for that for at a month or so, except every time I’ve seen him, I forgot … so here it is.

Pain Management:

We talked a bit about pain management and he told me to expect it to get worse, which was kind of depressing to hear in some sense, but also a realistic view, which I can appreciate. Now he also said, that that may not last forever, but treatments may cause a temporary increase in pain and that only after treatment will I be able to get a real concept of what things will be like forever. Makes sense to me.

Next week I want ask him for a scans that I put online. See each time they give me a treatment, they also produce scans before and after, and a report of the effects of the last treatment. I believe they do this by measuring the residual radiated area of the tumor and surrounding “meat”. That’s part of the problem about being really close to other parts. One of those parts is my colon. When we looked at the scans, it showed that the line of heavy radiation was exactly on the edge of part of my colon. Which means it’s taking a “hit” every time I have a treatment and it’s an area he needs to watch closely. So we’re not “out of the woods” yet and he may need to alter the plan at the last moment.

Only time will tell.

Quick Notes:

My computers and remote access to them all seem to be working perfectly now, unfortunately, I lost a few days there, but that’s a small price to pay considering what I’m looking to do. When I look around the cancer center, and take an honest thought about what I see, I am so damn lucky to even be able to type, let alone drive, take care of myself, feed myself, and all the rest of lives functions … believe me when I say, I’m lucky. It’s a rough and tough place just to look around.

My buddy Harry M. stopped by (the house), with an envelope from the folks at ARIS that I have not opened yet but plan to over the weekend. With him came David L. with a warm welcome. I always enjoy David’s company, he is a kind gentle man and always gives off a sense of calmness and relaxation.

I picked Alberic up from school upon returning to Vermont and as always talked with the kids that I’ve known there for the last 6 years … they are always happy to see me and joke right back. I also spoke with his teacher for a few moments and a few other parents that were around picking up their kids.

I started thinking about the tattoo again and decided that I mat design it as a “shield” of some sort. The reason behind that is pretty simple and I probably should have thought of it before. My name, “Skold” means “Shield” in Swedish … so how can I turn that down?

What a great way to start it. Unless something else really jumps out at me … I believe that’s where I’ll start in the design process. That may not be true for the T-Shirt though J .

To William B., I so happy to hear Becca is on the road to recovery! That’s awesome news.

I guess that’s a long enough post for this evening.

Today at work I believe we settled on a candidate to replace me. I that sounds weird maybe, but I was concerned that that process wasn’t moving along quick enough. I enjoy where I work, and the people that work there, and don’t want to see them stuck in a position of being short. I was so happy to take part in that process and feel that we made an excellent decision.

Well, the time is getting close for all things that we’ve been working toward, to start up. There’s an old Chinese proverb that states “Be careful what you ask for, you might just receive it”. Well, here we are. There has been so many loose ends to tie up but finally, I feel settled into a plan that will work with a minimum of discomfort, and a maximum of success. Planning 3 months away from home and loved ones (even though I’m coming back weekends), can be a challenge in itself.

I plan to blog pretty heavily this entire experience, and hope that it keeps friends and family updated and understanding what’s going on. I have received several “warning” ) say that in a friendly way), from friends that they’re coming to Boston to take me out for lunch or dinner.

To be honest, I feel like I’ll be fine. Yes, life will be different, and routine things won’t be routine, and other things may change … that’s true. But I also feel good karma surrounds me, and that all of this effort to get where I am now, wasn’t simply for the purpose of failing.

I don’t know how the outcome will turn out, but I do know, that this is the direction I was supposed to go in … of that I’m sure. Somewhere in all of this, there are other things that will happen for another (unknown at this time), purpose.

From this point forward, if you wish to help me, consider helping Sher. Give her a call to simply chat, or invite her out for a lunch or light dinner, send her an email … something like that. She has worked relentlessly hard in arranging all this for me … and I can’t repay at this time. She needs and deserves a treat.  Monday I’ll be gone for the week … keep her busy

Still no word from BC/BS, I’m beginning to get a bit antsy about this … but we’ve decided to wait till Monday before starting to “rock the boat” a little. You know, the longer they wait, the sicker I get and more permanent damage that’s being done, and I’m not thrilled with that concept, but what can I do? That’s the way business is done in America. If you don’t believe me, do a search on “complaints about Blue Cross, Blue Shield” … you’ll be amazed.

The week is over! And yes, I made it through another day of work … and that’s fantastic! I did tire towards the end of the day … but hey, it’s Friday, the last day of the week, I did leave about 45 mins early … but that’s not bad considering.

This morning when I left for work, I wasn’t feeling the greatest, but not that bad, that I didn’t want to go either. I got in the car and about 15 mins later while driving I got so sick that I had to pull over. Luckily, there was a “park and ride” right there. I pulled into it and stopped the car, got out, and walked around for about 5 mins and then started to feel better. It was kind of strange … all of sudden I felt so weak and sick to my stomach. Like a wave, and then as quickly as it had come on … it was gone. The rest of the day I was fine.

When I got home this evening I mentioned it to Sher and of course she asked if I took any meds before leaving, and you know, she was right. I always take a ½ of pill in the morning as soon as I get up, but today, I took a whole one without thinking about having to drive to work. As always, that’s my typical breakfast these days, 3 cups of coffee, 2 cigarettes and ½ of painkiller. Anyway, mystery solved … be careful in the morning with those meds.

Alberic came home from school today with a note saying he needed a scientific calculator and at least a 4gig flash drive … what the heck happened to pencils and paper? He’s just starting 6^th grade! Just kidding … I think it’s great that kids are using this stuff. I wish they’d issue kids a decent pc in school and let them keep it the entire section of school they’re in, like elementary, jr high, high school … you get my drift? You know how much homework you can fit on a flash drive? … I don’t, but I bet it’s a whole years worth at least, in any of those grade levels! I wish they’d switch over to ebooks for school too. Be a heck of lot cheaper and easier then carrying all that stuff everyday.

Tea time! … thanks Mac.

Sunday 6am:

I just can’t believe that the summer season is over already … is it me, or what? I swear, I think time is moving faster these days. Although that seems to be happening naturally or something, maybe it’s happening by default from age. Didn’t summers seem to last forever when you were a kid? Now it seems they last for a weekend or two and its over.

One thing I can say is, that during this years Labor Day we’ve had fantastic weather and the forecast for this same weather pattern to continue through the holiday, so that’s great.

Sunday 11am:

I did manage to mow ½ the lawn on Saturday! And do a little weed whacking to boot. I hope to do the back ½ by Monday. Luckily, this year the lawns haven’t grown much. We’ve had a cold rainy start to summer and now it’s almost over … so maintaining it hasn’t been much of hassle this year. Sometimes in the spring/summer it seems like I have to cut it twice a week, but not so this year … and that’s just fine with me!

This morning (Sunday) I took the new black Toyota downtown to the car wash, then vacuumed it out, and then did a little detailing on it. I detailed the interior using Amour All on the dash, console etc. etc., then did the tires and wheels with that “wet look” tire cleaner, polished the glass and mirrors up, and then decided that enough was enough and crawled in to take a nap.

Today is also the first day I tried not to take any pain killers. I’m tried this so I can see what I really feel like and if things are getting worse quickly, or quicker then I thought. I am experiencing more pain that’s unquestionable, however at this point I’d call it major discomfort. There is no comfortable position to be, lying down, sitting up, in a chair, standing, it all seems about the same. They always have those pain scales in the doctors offices but there’s no real way to judge where a person is on them. How do you really measure pain and discomfort?

The proton therapy is not supposed to get rid of the tumor, but merely stop its growth. If that’s the case, then I have to assume I’ll be on some kind of pain killer meds the rest of life. As I’m feeling now, I certainly couldn’t concentrate fully on a work task or anything that would require more then 5-10 min attention span.

Up until today (which is a personal experiment). I’ve been taking little 10 mg Vicodens every 4-6 hrs. I found that if I break them in half, and take the half’s about 2 hrs apart, they work better. At least for me they do. I don’t the “buzz” from taking a whole one, which (I feel) makes it difficult to drive safely and do things around the house, but rather the effect is more like a simple dulling of the pain without effecting my senses very much. So while the same amount of the drug is in me, I feel I have control over it’s effects. I have to admit, I may not last the whole day without taking one, but at least I’ll have learned where my pain tolerances are, even if I can’t pick them out on a scale.

I’ve taken more pills in the last 2-3 months then I have the entire rest of my life, including aspirin! I swear that’s and honest statement and if that’s not entirely true its mighty darn close.

Sunday, 5:25pm

OK … I ended up taking the meds, I thought maybe there was a chance that I could get by without them … but no way. So back on them I go. I really felt like I had to try and I’m not sorry I did. Now I know they’re necessary.

We had lobsters for dinner and they were great! I steamed them with lots of butter. We also had fresh garlic mashed potatos and asparagus. Maybe that’s what I needed, now I feel a lot better.