OK family and friends alike, this is my last entry for a while. Have no fear, Rebekah was given a crash course in blogging and hopefully she will be able to keep the website up to date on my progress.
My family came into town today and it's nice to have them here. Including my sister whom I haven't seen in a few years. I am hoping for the best, and expecting better. Thanks again to everyone who has taken the time to call, email, and post comments to the website. It was great catching up with everyone; I do wish it were under better circumstances. Everyone who has been helping out, a big thanks goes out to you. And thanks for all the prayers and well wishing, I will be thinking of everyone tomorrow.
I'll be blogging, programming, networking, playing baseball, and chasing my girls again real soon. Talk to everyone again later.
You know, just when I think I'm done with all the major doctor appointments and being poked and scanned, they manage to pull me in for another one. And I thought my PET Scan from yesterday was strange. Today I got fitted with plastic pants. Seriously, there's no punch line.
I got called in to see Radiation Oncologist today. The PET scanned confirmed the tumor was a cancer, which was no real surprise but there was the far outside hope that they would pull the tumor out and discover it was in fact not cancer. Glad they were able to shatter those hopes of mine before the surgery when I might be on some sort of emotional high of hope for an easy recovery. The good news is there are no other glowing spots to worry about. So anyway, it was decided that I would undergo radiation treatment a few weeks after surgery. This will consist of 6 weeks of getting nuked everyday. Doesn't sound like fun but I could be wrong.
Part of the treatment process requires that I lay perfectly still and to help asset in this effort they fitted me for, you guessed it, plastic pants. Let me tell you this is probably the strangest thing I've ever had to do. The process involves me lying on the CAT scan table naked while they drape this hot sheet of plastic over me. Yes, it burns in a hot wax candle type of way. The sheet goes from about mid stomach down to about mid thigh. The plastic eventually cools and hardens. They then latch it down so I can't move. In any other environment this entire process could actually be considered kinky, but needless to say it was less than enjoyable under current circumstances. So that's it, that is now my official plastic pants cast and they keep it on hand for my therapy.
Then get this, to help with the treatment they tattooed me! Marking where the tumor is so they know where to zap. So I have three small tattoo dots on my mid section. So, I got fitted for plastic pants and tattooed in the same day. Sounds like something that might happen to you after a night of heavy drinking in Tijuana.
Anyway, the tattoo rounded out my vein mapping that I got yesterday that I didn't really share with everyone. One of my appointments yesterday was with Vascular where they did an ultrasound of my good leg and with a dark black permanent marker, traced one of my veins from my upper inner thigh to my ankle with a few branches on the way day. So if they determine they need to replace a vein in my bad leg, they know exactly where to harvest it.
With that wonderful piece of information I think I will let everyone go. I do want to thank everyone who has been calling and emailing and generally keeping my family and me in their thoughts and prayers. It is greatly appreciated on levels you may never know.
It was a marathon day of getting poked, scanned, x-rayed, and marked up for my surgery on Friday. Of the 6 hours I spent at the various medical facilities today, I have to say that the PET Scan was among the more interesting tests I have had to go through in these recent weeks. PET stands for Positron Emission Tomography and what they do is inject a radioactive substance into you. Which needless to say, is a little concerning when you are lying there thinking about what they actually just put into your body. It's funny because they get your IV going, then they open this lead box and pull out a lead syringe which has the radioactive stuff in it, and inject it into you vein. You then have to lie still for 45 minutes to let the radioactivity make it's way through your entire body. Then they stick you in a machine much like a CAT Scan and start scanning for glowing parts. You see what happens is the radioactive stuff finds cancer cells and lights them up. So glow is bad.
Obviously, as with all these tests, the techs that run the test won't tell you anything about the results. That is left up for the doctor. But I took it as a good sign that the tech didn't have the need to put on sunglasses to look at my results. I have to admit while I was laying there waiting for the radioactivity to make its way through my body, I had thoughts of grandeur that there would be one of those freak indoor storms and while the radioactivity stuff jets through my body I would get struck with lighting and end up with some freakish mutant super power. But alas, no great mutant power, but I have noticed since coming home from the hospital, every time I walk into my kitchen, my microwave beeps. No sure if it's related or not.
I think that's about all I have for tonight. I don't really have that much going on until the actual surgery. But if I come up with more to talk about, or if there are any changes, I will be sure to post the information here.
You know there are actually other things going on in the family besides my situation. Since I have so many family and friends watching the website now, I should update you on that as well.
For myself, there's not much happening. A lot of talking to doctors and getting ready for the surgery. The doctors are actually giving me tomorrow off to spend a long weekend with my family. Monday is going to be a long day. I have a PET Scan, which I had never heard of before, x-rays, EKG, and blood work to prep me for surgery. My day starts at about 8 AM at Green Hospital and I wont get out of there until about 5 or 6. I had them jam all my pre op stuff into the same day so after that, I should have little to do until Friday. My surgery will be Friday, July 1st at Green Hospital and the doctors are planning on me being there for a week.
As for other going on (believe it or not there are other things happening in our little world besides me 🙂 ). The girls last day of school was yesterday and they are now moving on to the 2nd grade. The community pool had a Summer Break Pool Party today that the girls attended. It was great, they swam all day, had 4 of those big jumpies, this huge crazy slip and slide blow up thing, music, arts and crafts, food, and just about anything fun. I went and picked them up from this event and I was jealous we didn't have something like that when I was a kid. The girls had a great time, and they are getting so big. It seemed like half their school was there.
Bek is doing well. Needless to say her main focus of late has been to make sure I am taken care of. But she was happy to wrap up the school year as well. Bek has been very active in the schools PTA and helping out in classrooms. You can tell she really enjoys it and she has made some great friends doing it.
We've had a lot of offers from people to help out with the kids or around the house, anything we need. I just wanted to let you know we are not blowing you off by any means and I am sure we will be calling on some of your services in the very near future. Right now, things are really busy but not unmanageable. I am getting around OK and not being too much of a burden on Bek and the girls. That is probably all going to change next week.
So, I finished meeting all my doctors today. First some good news, the Vascular Surgeon said according to the MRI and the CAT Scans, my leg which there was a concern would suffer some sort of permeate damage due to the tumor pressing up against the vessels, is going to be fine. There shouldn't be any long-term damage. It may take up to a year to bounce back but it will bounce back. It was kind of cool because it was the first time I got to actually see the MRI and CAT scans and see the tumor itself that is located in my pelvis cavity. There is no question, that bad boy is big.
Also, it looks like the date for my surgery has been made. Unfortunately the earliest they could get everything together is July 1st. I kind of have mixed feelings about this. On the one hand, I'm in no hurry to get cut into. The surgeon today reiterated that it is not going to be a pleasant recovery. On the other hand my leg hurts and I need to get this thing out of me. Also, we can't figure out what the next step is until we get this mass out of me.
For now, I am scheduled for some more test and prep work for the surgery.
Well today was kind of a disappointing day. It all started with a wonderful MRI which was very reminiscent of the movie "The Incredibles" when they attempted to stuff Mr. Incredible into a tube to jettison him down onto the bad guy's island. Once they got me stuffed into the tube it was basically just a bunch of loud noises with me being told to hold my breath a lot. Good news is that should be the last test where I need to be stuck with a needle for a while. At least until the actual surgery.
I also met my Oncologist today. He is going to be the person who primarily takes over my treatment after the surgery. It was a very disappointing first visit mainly because we were really hoping to get a lot of questions answered by him that he is just not ready to answer at this point. Basically, he can't give us any new information until after the surgery. No idea on the exact type of Sarcoma, or if it is actually 100% Sarcoma, what treatment there is going to be, or what my quality of life is going to be.
It all hinges on the surgery, which is an issue in itself. Now, they want to include a Vascular Surgeon in on the process to address any issues they may have with the tumor and the arteries as well as fix any problems that the tumor may have caused to the arteries. This makes the total number of Surgeons in on the operation 3, and the process that much longer.
Over the next couple of days I will be meeting with the Vascular Surgeon as well as the Primary Surgeon. Then the 3 Surgeons need to get their schedules all lined up to actually perform the surgery.
So, there probably won't be much to update everyone with until Thursday night but if anything comes up I will be sure to post it.
It's been so long since I've posted anything and I have had so many things to talk about. I just haven't had time. I was working on a presentation for the computer group I am a part of, the SDNUA and thinking about how I should be putting a lot of this information on my website. If I could just find the time to do it.
Sometimes life forces you to turn the page on what you are currently doing and start a new chapter. This is what has happened to my family and myself over the past week.
First off let me say, to my family and friends who I haven't had a chance to talk to yet, I apologize if this is the first time you are hearing this information. If I had my way I would have had long conversations with each and every one of you.
Today, I was officially diagnosed with a rare form of cancer called Sarcoma. Right now I'm afraid there isn't that much information to relay. I have a baseball sized tumor in my pelvis that needs to be removed and the doctors are working on getting that surgery out of the way in the next couple of days. I know this is a lot of information and at the same time not a lot of information, unfortunately it’s really all I have right now. To give you a blow by blow (or needle poke by needle poke) of events over the past 7 days would take too long and it would be filled with a lot of worthless information. I just wanted to get what important information there was up on the site. And to let everyone know, as much as I can, I will keep the website updated with my progress.
I will make sure everyone stays up to date on my progress if you care to be. Please keep my family in your thoughts. And I will talk to you again very soon.