Chondrosarcoma – ah shit, bob's sick

It’s too late in the evening for me to write out my day … but stay tuned for some interesting news about going to Boston and proton therapy!

What an interesting day.

I stopped in to work this morning at about 8:30am for a 1/2 hour. I had a broken variable in one of scripts that I fixed, talked to Harry M. for a few mins, and then left for Dartmouth. I had hoped to speak with Jason R or Bill A. but I guess I’ll contact them tomorrow. The hospital is only 7-10 mins away from work so I was there in a flash. I stopped along the access road and called Sher and asked her to check my email and see if Dr. Delaney had witten back to me (I wrote him last night,Sunday), but didn’t really expect I’d be hearing anything yet … it was way too soon, and I was way too desperate and in need of an answer. No reply … but then Sher asked if I wanted her to call them … I said “yeah! … go for it” … what did I have to lose? She said she’d try and I went on to the hospital.

My first appointment was with a Vascular Surgeon named Phillip Goodney. At the time I wasn’t feeling upbeat about talking to him. I really wanted to make sure I got through to Dr. Delaney … even if he could look at my case and see if I could even play with the idea of being a candidate for Proton Therapy.  That’s all I really wanted … Was to know if I had a chance at it. I wanted to know before these interviews today. I wanted to “blow off” all these appointments and just wait … but I couldn’t. I had to face the reality that I may not be suitable for the therapy and if I blew off everything else, I’d be stuck with nothing. So I went forward, reluctantly … but forward.

My first visit was with Dr. Phillip Goodney, MD Vascular Surgery. Let me tell you, this young man was a pro. One of the best Drs. I’ve ever met. He explained his role in the surgery perfectly and answered all the questions I had that were relevant to his work with direct, accurate answers. He also showed me the latest scans and all the arteries he may have to work on. I was impressed to say the least. If I have to face the surgery at Dartmouth, he alone, built enough confidence in me to comfortable enough to let it happen. If you need a Vascular Surgeon and you’re in the North Eastern US, look him up. BTW, I recorded the conversation with Dr. Goodney and added to the audio page.

I had an hour or so to blow before my next appointment so I went downstairs and grabbed a coffee and then outside to have a smoke in the parking lot. I noticed there was a voicemail on my iphone from home so I called Sher to see what was up.

Voila! … she had gotten a hold of Dr. Thomas Delaney’s office, explained that we were in a hurry for options to the surgery and that whole story (see yesterdays post) and gave them as much info as she could …. and bingo! They were interested.

So now my day was definetly starting the shine. I went back in to face my next appointment not really caring what I heard because at least I had a chance at an option. Dr. John Seigne was my next appointment. I waited and waited and waited until I finally got pissed off and left. There was a room full of folks waiting for him too. They asked if I wanted to re-schedule the appointment and I said “I” never scheduled it in the first place, Dr. Mizra did. The receptionist just looked at me with blank face … so just walked away and out to my car. What the hell else was I supposed to do? If she didn’t know what she was doing, how was I supposed to know.

But all and all I considered it a good day. On the way home I joined in a conference call from NYC with my oldest son and some new clients we are trying to get on our servers. That was a success … so the day started to shine again.

So here I am, drinking Mac’s Chaga mushroom Tea again, waiting for Dr. Delaney or someone from his team to call. Either way it goes, conventional surgery or proton therapy, I’m getting comfortable with the idea that life will not be the same … but it will be OK and go on.

It’s 6 am Monday morning, I’m sitting here at my pc, planning my day out. Well actually, most of it has been planned out for me in a sense.

I have to see:

 Dr Phillip Goodney at 10:40 am

Dr Sing at 2 pm

I also have a phone conference at 3pm for our server company Scifillian with Kirk J. and one of his clients.

I also hope to hear back from Dr. Thomas Delaney (or I’m going to call him) of Mass Gen. Hospital. This is an important one because I’d find out if the proton therapy was available for me. I don’t know if I fit the program … but I’d like to at least find out.

There’s so much stuff to do and so quickly … for the first time, this morning I feel sick … like sick to my stomach from having too much to do, and too much to investigate myself, and not nearly enough time to accomplish it.

Let’s see what the day brings.  Come on Dr. Delaney …. gimme a quick call.

Midnight Visions, Soulgazer and a Call from Florida

Sunday, August 23, 2009 – 6:30 pm.

I have so many posts I wanted to make today that I decided to turn them all into one amazing, and totally true story/post. This is factual and it starts just after midnight on Saturday, which really makes it Sunday morning.

After a long and tiring day (Saturday) around midnight, I said to Sher that I was going to go and lay down and see if I could fall asleep. I’d been having trouble getting comfortable the last few nights and was determined to try to get to sleep on the early side (yep, midnight-ish is early for us). Sher was still working on her computer when I headed into the bedroom and flicked on the TV for some background noise in hopes that’d help me sleep.

I reached over to my nightstand next to the bed and grabbed a pain killer, took it and figured that would really help put me out. I started to watch the TV. About 10 mins later I had a strange vision that appeared right above the TV. I was still wide awake! The vision flashed 3 images at me, they were images of ancient sandstone type carvings of 3 different (for lack of better words) ancient people or entities. I thought to myself, “what the hell was that?” … I didn’t say anything to Sher.

Thoughts ran through my head like crazy. Were they some kind of Angels?, Where they trying to tell me it was my time to die? Were they coming to help me? … leave a message? I didn’t get a positive or negative feeling from it … just simply saw it and then it was gone. I bet the vision didn’t last for more 2 seconds. Just 3 quick flashes of ancient sandstone carvings depicting old wisemen or something to that effect.

When I woke up in the morning, I told Sher what had happened and that I hadn’t said anything because I didn’t want to frighten her (Sher is a very spiritual person) and have her thinking all night that “this was it” or something. Kind of reminded me of the old Sanford and Son TV show “look out Elizabeth, I’m coming … it’s the big one!”. We’ve been having enough trouble sleeping these past nights without anything like this happening. So we talked about it a few mins and left it as just a weird experience.

About 2 hrs later, an old friend of ours James T, who is a gnostic, was having an online prayer circle or meeting and asked Sher to join them today. She did. Sher said they were praying for me. About 20-30 mins into the meeting our phone rang. Sher was sitting at her computer and I was sitting at mine checking my morning emails and getting ready to do some invoices for Scifillian for the next few months. Sher was closer to the phone so she got up to answer it, spoke a min and handed me the tele.

The voice on the other end said “you don’t know me, but I read your blog (AhShitBobsSick.com) and tracked down your phone number. I have the same cancer as you!” … Whoaaaa … I thought. This just can’t be real. Sure enough, it was a man calling from Florida that has the same cancer as I. His name was Bill N. and we talked for quite a long time. He also told me that him and his wife had listened to my audio recordings of the conversations that I’ve had with my doctors.

He told me he had opted out of the conventional surgery (same diagnosis as I had) and had chosen, an experimental kind of radiation called Proton Therapy. Oh man, he had my full attention. I mean up until this point I haven’t even met anyone that even heard Chondrosarcoma let alone had it. We had a great conversation and Bill provided me with enough info that I could begin to make contacts. He suggested a Dr. Thomas Delaney from Mass. General Hospital. I know Mass General already and its only about 2 1/2 hrs or so from our house.

Meanwhile, Sher is having her prayer meeting online with James T and another member of the group via Skype (though Sher’s sound card is not working so they were texting)

(James T is also known as “Soulgazer” his forum is: http://www.soulgazer.iamlight.info/)

It was so strange the way all this happened, and right after the Gnostic prayer. Bill N. and I have exchanged several emails today and we plan to keep in touch about our cancer. When I hung up the phone with Bill, I just couldn’t believe what was happening. I immediately sent off and email to Dr. Thomas Delaney in hopes of setting up an appointment with him to discuss these options. You see, I don’t have that much time left before they want to do the surgery … and I don’t have a great feeling about it. The reason I allow it to move forward is that I haven’t had another viable option … but now, thanks to Bill N., I do … and it’s one that’s worth investigating.

Hey … I gotta thank Sher, James T. and his friends, and a big thanks to Bill N. and his wife whom read this blog, listened to the audio tapes and had the persistence to track me down in real life and openly tell me their story. And what a story it was … we have a lot in common and I plan on keeping this relationship open.

OK, you’ve read this … I don’t care if some of you think I’m going crazy or took too many pain-killers … but this is an accounting that’s so true … it frightened me.

I also want to thank Billy B and his lovely wife Rebecca for helping us complete my Last Will & Testament, and filing the proper papers so that Sher could have full Power of Attorney over me in the event of catastrophic failure.

Even though I did not accomplish the things I set out to do today …. Soooo much got done. Thanks to all.

Oops, yes Mac, I drank more of your Chaga Tea today!

And another thing that’s amazing is that this blog is only about 10 days old! Can you imagine?

Saturday Night, August 22, 2009

It’s been another long day and way too much to write about considering it’s almost midnight. I have changed the way I’ve been taking my pain meds which seem to be working quite well. I used to take them whenever I felt pain coming on. I’d take a few and after a little while they’d ‘kick in’ and start working … but I had to take a few at a time. What I started doing now is try to keep a constant flow of pain relief by taking lesser amounts, more often. This way the aches and pains never really get a hold on me. It’s working much better.

I also made and drank some of Paul’s tea from the chaga mushrooms. Wow! I must say that they really make a cup of great tasting tea. I was surprised at the great taste and the idea of no additional side effects. Thanks Paul … it’s awesome. Tomorrow I’ll brew up some of the turkey tails and reishi to try them.

Mike C. stopped by this evening and we had a great talk about all kinds of things. That’s one of the things I like about Mike, we can discuss just about any topic. It was nice to see him. He’s often traveling and don’t often have time to get together and simply “shoot the breeze”, but tonight we both made time.

I haven’t had time to add any recipes to CookingWithoutBob.com the last few days and my appetite has not been the greatest which makes it hard to write about food … except that I love food! I’ll try again tomorrow.

We have a busy day again tomorrow. My hope is that I’ll have a chnace to drive to Woodstock, VT and visit my friend Bill and his wonderful wife Rebecca. I hope thats what my day brings!