Thursday, December 4, 2008

Jaded because of MD Anderson and Scans

Here are some MD Anderson pictures as promised. This is the HUGE granite fountain. I'm sure that didn't cost a lot.
I LOVE sitting by these bubbles in the breast center. The sound is very relaxing and they have recliners in front of them. It's hard to get up when they call your name.
This is the famous tree sculpture. I don't know the story behind it. This is where Paul always meets me when he has to pick me up from MD Anderson. He always says "I'm by that crazy looking "tree" thing in the lobby"

They had a silent auction of decorated wreaths. I loved this Beatles one. Gets my vote. There were about 100 of these, so I got to check them all out with all my down time.
This wreath made me think of my little sister. She would like the Hannah Montana wreath.

Just want to write a post because a few things are on my mind and I have some time to kill here at MD Anderson on their computers. My prescription takes over an hour to fill and I now have an hour to kill. Earlier, I had to wait over an hour to get my name called for my appointment and then finally "Shannon (long pause) EZZZI???" All I have to do is hear Shannon and a long pause and I know it's me they are attempting to call. I haven't yet changed my name here because I have seen what has happened here when you change just a medication. Getting any information changed is this messed up maze of a computer system they have here at MD Anderson (or any hospital for that matter) is a near disaster I wish to avoid. Then, after I got called I got weighed (take off a pound because I have my big boots on), got my temperature and blood pressure taken and then back out to the waiting room to wait for yet another hour.

This was nothing compared to the marathon day I had of scans on Tuesday. I got to Houston at 2am and got to Paul's at 3am. On the plane I realized that they scheduled my first check in for 6:30am the next day. Thankfully the appointment times are more like suggestions here at MD Anderson. I took the suggestion into consideration and showed up at 7am tired as hell. I had a bone scan, then got some blood work done, then I got my MRI done, then had a chest X-ray and finally a CT scan at 7pm. Yep. I got done at 8pm. 13 hour marathon of waiting rooms, needles and scans. The CT was the worst. I waited for 1 1/2 hours while drinking banana flavored barium (BARF!!!) then they called me back and I was so excited to get the last scan done. All to find another waiting room they dropped me off in with 12 other people, some of whom had been waiting there 1 1/2 hours as well. And that is just what I did. Luckily I had my computer and dvds. There are other reasons that the CT is the worst. I never told you all this before because it is kind of private and has to do with private parts but the CT scans that I get for the sake of the trial involves rectal contrast. They violate me. Yep, I have to get a barium enema contrast to get a nice look at my colon in the scan. You honestly do a walk of shame out of the scanning room. I hate these CTs.

As this day dragged on I kept thinking about how over-scanned I was. CT, MRI, Bone Scan, Chest x-ray every two months??? Whatever good this new drug was doing for my body could very well be completely cancelled out from all the radiation being put into my body from all these scans. I know the trial sponsor (who has STILL not paid me back a single dollar of the $5,000 I am out on traveling costs) has no interest in doing what is better for me. All these scans are way too much for me, but all this info is huge in the trial for getting this new drug approved by the FDA (I won't even go into what BS FDA drug approvals are. Anyone remember Vioxx?) Even the oncologist I saw today thought it was ridiculous how often they were scanning me. And he also thought it was really shady that I hadn't gotten paid yet. At least someone in this building understands me.

Test Results: My blood test went down to 276 which is the biggest drop yet and that's really good. All the tumors are stable (no bigger no smaller) there are a couple bone spots that I am concerned about. One on my ribs that was new last time but looks a little bigger. Another new spot on my spine. Both are very small. Scary to have a spot on my spine. I understand that when the bone heals and gets rid of cancer it gets bigger and looks worse while it gets better because the bone heals around it. This is what the doc seems to think is happening. I could have had this spot on my spine before but it isn't showing until now because it is in the healing process. Still, this doesn't make me feel any better.

I'm starting to wonder if staying on this study is right for me. My results are good but not amazing. I could get results like this from hormone therapy potentially. Also, I could drastically cut down the scans, travel, and money that is also affecting my well being. I don't know. I have to fly out again on Jan 1st New Years Day. Awesome huh? I'm getting pretty jaded with all of this. But, if this is going to extend my life, isn't it worth it? Ahh the wonderful world of cancer and NEVER knowing what the right decision is. I hope the trial ends soon. If it does, I can continue getting the medication minus all the scans and trips to Houston. Cross your fingers. This is the scenario I need to play out.

Well, I messed around enough and I hope my prescription is ready. In a couple days I'll post some nice MD Anderson pictures. I will be driving to Austin as soon as I leave and I am so excited to go. I love hanging with Paul in Houston but I am always so tired and grossed out from my day of scans (especially after the CT) that I'm not much fun. We were all excited to watch the MSU vs North Carolina basketball game last night and it was terrible. I have never seen State play so bad. North Carolina is awesome, but man, it was a tough game to watch. Paul got on Facebook and we were hooked on that all night. He's only the most popular person on Facebook EVER.

Starting fresh as soon as I walk out of this building.
I promise


  1. Can't wait to see you at Sam's Boat Friday at 6pm (Braker & MoPac)!

  2. Hang in there Shannon! And congratulations on your number going down below 300! I don't think that it has been that low since we met a year ago. That is HUGE!

  3. We miss you and we've got lots of new snow waiting for your board. TAKE CARE - Love, K

  4. You have every right to be jaded, the way hospitals and medical staff treat their patients is inexcusable. Im sorry you have to endure people's ignorance/inconsideration. Heres hoping the trial ends soooooon! Sending love and positive thoughts your way. Your amazing.

  5. You have every right to be jaded, the way hospitals and medical staff treat their patients is inexcusable. Im sorry you have to endure people's ignorance/inconsideration. Heres hoping the trial ends soooooon! Sending love and positive thoughts your way. Your amazing.

  6. oops didnt mean to send my comment twice. Im new at this whole "blogging" thing. lol

  7. Just catching up on your blog, Shannon. Played indoor with Lara tonight, & she showed me the jewelry you made- so pretty!!! Lucky Lara since she got to see you! Take care & stay strong- you really are amazing!

  8. yay on stable. and poooooh on hospitals. ;) it's funny, because whenever i hear "rebecca......(long pause)," i know it's me too. i'm looking forward to seeing you on friday at the cancer christmas. :)

  9. totally stinks that you have to go through all the craziness... we need hospital procedure reform! ... but going back a couple posts. Last time I did my big shopping trip I got Vanilla Almond Breeze. It took over a week for me to just open the box. I'm a MILK-aholic, I just knew this almond "stuff" wasn't going to cut it... but I finally did open it this past weekend and LOVE it! It's got a second great draw to it, that because it does taste so good, I feel satisfied with less of it. I can drink a 1/2 gallon of milk on my own (I know horrible), but I'm happy with a 1/2 glass of this a couple times of day! Thanks so much for your recommendations!

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