It's the day after meeting with Dr. Nemunaitis about the clinical trials I'm elegible for. It looked like five a week ago, now it's more like two. That's okay. The cancer vaccine is one of the two so I am hopeful that it is the end all for treatments. Pipe dream, I know- but you just never know.
I got into Dallas Monday and had an easy time getting to my economy car which turne out to be a brand new, never driven, Chevy Tahoe. Everything IS bigger in Texas- hee hee. Really though- they ran out of economy cars with the guy in front of me. I had a choice of mini van or Tahoe. HELLOOOOOO! No mini van for me- I don't care that I AM a mom, I would fit in with the big 'ol trucks in Texas a little better driving something with some balls.
I got to my friend Jason's house- it was so nice and his wife was great. So nice of them to let me stay for a couple of days- it save me a couple of hundred dollars of hotel stuff. And it was nice to have someone to talk to.
Tuesday morning I met my other Navy buddy, Danny at the hospital. He was nice enough to go with me to the appointment for moral support and for me to have someone to talk to while I filled out the TON of paperwork. We got some Schlotzky's after- Oh how I missed that. Turkey and guacamole' sandwich. nom,nom.
I met with Dr. Nemunaitis, he was very nice. I was nervous that he'd be stuffy and pompous like Dr. Arnold. Not that being such makes you a bad doctor- I just have a VERY bad taste in my mouth from JERK doctors (Dr. Arnold has the personality of Squidward from Spongebob Squarepants- pointed out to me by a hospital associate). But Dr. N was not at all that. I got a good feeling from him. He was very nice and relateable and I wasn't uncomfortable. Hint for ANYONE... if you're intimidated by or uncomfortable around your doctor, you've got the wrong doctor. The vaccine looks like a go and there is another treatment that I could do with or after the vaccine (I think I'll wait until after) that is in infant stages, but sounds very promising.
I think they are interested in my case for more than one reason... appendix cancer is rare. I have the rarest of the appendix cancers. AND I have Lynch Syndrome. I'm a Diamond In The Rough. Dr. N said they had seen Signet Ring Cell Adenocarcinoma but not with Lynch and I don't think they have seen any Lynch cases. SCORE! For what it's worth.
The thing about the vaccine- the grant for the trial was for a certain time and that time has passed. BUT the FDA has approved the extention of the trial, no money though. So the vaccine will cost me a certain amount out of pocket. I'm okay with that, I just hope they can harvest a kidney while they're in there so I can sell it.... like anyone would want a nasty, cancer-covered kidney. Though I may be able to charge more... hmmm.
OH- yeah, the surgery. I may be back in Dallas as early as next week for a hysterectomy so they can do that AND get the cancer specimens they need to make the vaccine. 2 for the price of one. I wanted the damn hysterestomy for over a year now, and now I'm going to get it. A blessing in disguise that I didn't have it earlier. Did I say that already? Well, I mean it. Hooray for another surgery. Let's see how many we can fit into a 2 year timespan. My count is 7. Including my c-section in December of '08. I'm okay with it. Really. I'd like to get it done as soon as possible so I can heal as soon as possible for the Disney retreat.
As of right now, I have an appointment with Dr. N on the 15th, then surgery on the 16th- should be an easy recovery? I think. Then heal over the holidays, Disney in Jan, Vaccine in Feb and monthly after that and hopefully good to go by summer-ish. If at ALL possible, we may do it next week. I'm SO there.
I'm actually writing this on my 2hr+ flight from Dallas to Charlotte. I got a middle seat. :( But I figure I would cut back on explaining it a million times over when I get home. "Go read my blog..... oh, and tell a friend. " har har.
I have made the executive decision to 'commercialize' my blog to make some extra $$. Gonna need it, cuz flying to Texas from Ohio every month and all the other stuff won't be cheap. So I hope you all don't mind the ads that will be accompanying the page starting in a few days, gotta figure out how to do it.
On a different note: I 'spoke' with a friend/aquaintance (actually texted a bit) who informed me that a fellow cancer fighter lost her battle recently. She was only 3 years older than me and left behind 2 young sons. I had the honor of meeting her at the Relay for Life in May. I did not know her well, but from what I saw she was a very vibrant- beautiful person inside and out. She fought with colon cancer and was supposed to have been in remission this summer, but it came back full force. She passed away September 16th, 2010. R.I.P. Marcie. I fight for you too.
I think she was being treated at the James. Possibly by the one and only Dr. Arnold. I can't help but think if she'd have had a different doctor that things might have turned out differently. I do not know all the facts but this is story #3 of colo-rectal cancer treatments/diagnosis at OSU by Dr. Arnold being botched. The thing is- OSUMC overall is great. My sister had an AWESOME doctor/ONC. I WISHED I had some kind of GYN cancer instead so I could have dealt with him. So you can't let the bad apple ruin the whole barrel. The nursing staff at OSUMC was the best I've been around (and I've been around plenty), the GYN Oncologist was a DREAM!!! So to sum it up... if you have a GYN cancer- Dr. O'Malley at OSUMC=WONDERFUL!!! If you have colo-rectal cancer- get thee to Cleveland Clinic or somewhere other than OSUMC.
I will get off my soapbox in just a moment... it PAINS me to hear that someone who supposedly gets a clean bill of health can die within 6 months after that. It is inexcuseable! We're not talking about an elderly person with multiple other health problems. We're talking about a 37 year old woman with a whole life ahead of her. I could just scream. There are so many treatments out there and so much technology and yet she is no longer with us. Right now the only thing I can do is to keep this blog- and keep talking about it to whoever will listen. And even to those that won't... I'll just yell louder.
I hope that if this blog contains any wisdom, that you, the reader will pass it along when you hear any cancer story. The best weapon for the cancer patient is knowledge.
Arm them well.
No comments:
Post a Comment