Tuesday, May 6, 2008

The Cooties Are Contained

I guess I should put this first: I did not light up like a Christmas tree in my scans. Dr. Fields told us today that according to my scans, my cancer has not yet spread to my liver, lungs, or brain! So that’s good news! The scans did not show anything on my lymph nodes either, but that’s not to say that it is not there because it would be super small – but that’s what the radiation is for, getting rid of the microscopic cooties. It is pretty “routine” (whatever routine means) to have some lymph nodes removed as a precaution, but I am going to see what Dr. Pou says about that tomorrow.


I met with the radiation oncologist this morning - bright and early. We got the rundown on radiation, the good, bad, and the ugly. The cancer center is pretty nice and everyone there was super friendly – which I’m sure is a prerequisite to work in a cancer center – I mean, most of these people are having bad enough days as it is - all you need is a grumpy receptionist to push you over the top. We met and talked with Dr. Fields for a while, he will be my radiology oncologist and once radiotherapy starts, I will meet with him once a week. Oh, radiation will last 6 ½ to 7 weeks and it will start 4-6 weeks after my surgery. He was very to the point and down to business – which seems to be theme with my doctors. He examined me poked around in my mouth, and stuck the scope down my nose without any numbing stuff but it actually didn’t hurt – and this time I got to see! Yeah buddy, bet you can’t say that you’ve seen down your nose!!! They had a TV set up to record the “show” and take some pictures. As Dr. Fields was putting the pictures in my folder, I made him show them to me and I got to see my voice box and my esophagus and down my throat – it was pretty neat! Warner just watched the light in my mouth the whole time!


Dr. Fields brought in another radiation oncologist in case he would ever need to fill in for him and I really did not like this guy. Dr. Fields was very gentle and reassuring and did not cause me any pain even when examining my mouth. This guy, when he was examining my mouth was very rough and pushed very hard (I almost threw up on him when he stuck his finger too far back in my mouth) I gave him several dirty looks and he kept apologizing the whole time he was examining me – seriously, don’t apologize, just don’t hurt me, obviously you aren’t sorry! I just did not like him - and I am still hurting tonight from his little exam. My favorite part of all my exams so far is when they are checking your lymph nodes in your neck because you get a pretty nice neck massage!


I will hopefully find out when the surgery will be at my appointment with Dr. Pou, tomorrow at 10. We will go over the treatment options and then I’ll have some decisions to make. I also have a dentist appointment at Mary Bird Perkins at 8:30 with Dr. Ory to make sure all my teeth are healthy before starting the radiation because the radiation will be very hard on my teeth because I will lose most of the saliva in my mouth – and I will probably permanently have a dry mouth. I will have to fluoride treatments every day for the rest of my life once I start radiation. I have to meet with a medical oncologist at some point just to discuss chemo options in case it is ever necessary and just to make a connection there.


I met with the dietician this morning as well. She was really nice. I got some free samples of Boost Plus and some other brands to try before my surgery so I know which ones I like because during radiation they will be the bulk of what I am eating. I am not allowed to lose more than 10 pounds once I start radiation – this does not count any weight that I might lose during the surgery and recovery. If I lose more than 10 pounds I will have a feeding tube in my stomach – and they will have to put that in with me kicking and screaming, so I will not be losing any weight once I start radiation (no promises after the surgery though)! I will also be eating around 2600 calories a day during my radiation therapy and right now I’m supposed to be eating 2100-2400 calories and a ton of protein to bulk up for the World’s Strongest Man Competition surgery! This will be the only time in my life I will be excited about gaining weight!


I am working on training Julie at work – which has been interesting. I’m teaching her how to do things that I barely know how to do myself! Not to mention I am taking my pain pills around the clock because it keeps me from getting the hung over feeling and it keeps me from hurting as much. So, imagine me, on pain pills, trying to teach someone how to do my job that I barely know how to do. Yeah, it’s a lot of fun! No, it really is going well.


Edgar is adapting well. He is Ruekie’s little shadow and he whines if Ruekie is not around. He is still sleeping all night, and he slept from 11-5 last night! Sorry this update was so long! Hope you all feel informed now! Tomorrow’s entry will probably be another long one as well! Can you believe it's been over a week since we found out? CRAZY!

12 comments:

Anonymous said...

I'm glad it didn't spread! Endoscopy is fun huh. I can technically do that, but I wouldn't :). I have pictures of my vocal folds too, but ours was oral and not through out nose. It is especially fun after you have eaten :(.

I don't know if your ENT or anybody today told you, but I had a patient who had severe dry mouth after radiation and he used an artificial saliva and of course he didn't like it but it helped!

Lauren

Anonymous said...

I must say, I think testing/scoping isn't so bad when you actually get a peek at what they're looking at...it's pretty cool. Nice and distracting! With the light in the mouth thing I keep thinking about the little mermaid! You know, when the sea witch takes her voice.

Susan

Anonymous said...

I'm seeing a new reality TV show in the making. Something between Fear Factor and The Apprentice. With all of the medical equipment and the drug induced employee training, this could be a hit.

Keep up the great attitude. I'm really enjoying "being there" with you.

Todd Garner

Kasey said...

steph, this is hal. I want you to know that we love you and are praying for you. I wanted to call but I wasn't sure when you'd be around. I'd like to talk to you about your radiation and make sure that they've talked about everything with you. Call me when you feel like it. Warner has my number. love you both.

p.s. Edgar is precious!!!! i do love his ears!!

Anonymous said...

Some of the artificial saliva products are OK...the thinner ones aren't as "yucky".
I kind of brush them on my teeth and gums and it helps.

Anonymous said...

that's great news! i'll be praying that your upcoming surgery goes well!

Anonymous said...

Hey Do call hal Knight - she is familiar with all this stuff and can give you GOOD insight.....Steph yu must publish - you are a gifted writer my sweet DIL (that's daughter in law in code!)....love to you 4 - Poor Ruekie - is anybody loving him now?????????? LOVE SKSB

Anonymous said...

Stephanie,We were shocked to hear the news. We are thinking about you everyday. Keep up the positive attitude and you will win this war with cancer. We love you and if there is anything we can do, just let us know.
Love, The Dancer's

gordon said...

Does warner get to eat all he wants to, that could get ugly. Thanks for letting us know what's going on, me and debi check this daily. You and warner are on our hearts, and we continue to pray for you both. Warner, I'm still looking for you some books to read, but toys r us was closed when i stopped by, I'll check with chris to see if he has some that are not colored in, you never know. Saints rule

Anonymous said...

Steph- I can't believe it! I checked my facebook today and found your message. So I read your blog of course and even though I was sad you made me laugh! You are so crazy funny with how you handle things and I have a feeling you will make this another adventure. I will be praying for you and keeping in touch!

Ashley

Anonymous said...

Cootie containment is a good thing, as is high caloric intake. Don't know about this artificial saliva business, but understand it is likely preferable to dry mouth. Aunt Anne has sjogrens syndrome and among its baggage items is dry mouth and dry eyes. The latter eliminated her as a candidate for cosmetic eye surgery, which has her bummed out.

Anonymous said...

Stephanie & Warner,
We just found out today about all your going through. Please know you will continue to be in our prayers until you are 100% better. We'll stay in touch with Bill and Susan while also reading your blogs.
God Bless!
Robin & Mike in Bham