Wednesday, October 15, 2008

Round 7...or Round 1?

I was holding off posting in the hopes that I'd have a surgeon/method picked by now...but alas I do not. I'd say that I'm 90% sure of who I'm going with, but we're still working out some final insurance kinks. That being said you can probably surmise that Mayo Scottsdale has won my vote in the 2008 Colon Surgeon Election! I'll be just as happy if for some reason I'm going to have to go with a traditional surgery and the other surgeon, I really liked her as well, and it's been a tough decision.

Along that vein...and I'm sure everyone is sick of hearing about our broken Healthcare system, and the need for Healthcare reform with all the election coverage...but if you've never understood what all the hype is about, or you've never been un-insured, or had a major illness you may find yourself rolling your eyes anytime the word comes up. I'm not going to get political here, but I can give you a perspective about how outrageous the costs are. We're learning quickly about the "Cost of Cancer". Each of my chemo treatments costs upwards of $10,000! Add onto that all the Dr.'s appointments, Surgery, Hospital Visits...its adding up quickly. I am SO thankful/blessed that I have good health insurance that is covering nearly all of my costs. You can do the math and see how stressful it must be for someone without health insurance to have a major medical crisis...expenses like this would bankrupt even the most frugal of us. What I think is worse is the possibility people aren't getting the best care available to them because of this. Everyone deserves that. I could go on...

The Mayo surgeon's request was that I be off chemo for 4 weeks prior to my surgery, so that pushed the date out a bit to the week of the 27th (as of right now, tentatively scheduled for Halloween! How exciting, my very own holiday!). I called to run this by Dr. B last week and I got the sense that he was not thrilled about that, but willing to go along with her request, so I cancelled chemo for Tuesday, but still kept my usual blood work and follow up appointment with him. Oh the plans I was making in my head having a break from chemo! I admit, I didn't really have 'plans'...but a girl can dream. :)

Yesterday at my appointment my blood work came back showing that my liver enzymes and CEA are continuing to go up. His first comment was that it seems the combination of chemo and Avastin (the drug I had to stop for surgery) are what was giving me such positive results before. He was not at all comfortable with me being off chemo for an entire 4 weeks given these new blood numbers. We're in a bit of a rock and a hard place since he doesn't want to postpone surgery any longer and I can't go back on the Avastin pre-surgery and for some time after while I'm healing. He had mentioned in a previous appointment that there were other antibody drugs we could try that don't have that same risk of bleeding as Avastin. Enter new drug, Erbitux.

Erbitux's special power is targeting a protein called the epidermal growth factor receptor (EGFR) that is found in cancer, and interfering with cell growth. There was a special test called KRAS that Dr. B did on my tumor biopsy to be sure this EGFR was present, it is, so I'm a good candidate to give it a try. It's a fairly new drug that up until a couple years ago has been in clinical trials.

Then came the news that I have told myself there is always a chance of hearing, that was that I needed to switch chemo drugs, as Erbitux was found to work better in combination with something other than what I am currently on (FOLFOX). I asked him which drug, and he said FOLFIRI. I've read about FOLFIRI, and was secretly hoping that I wouldn't ever have to 'upgrade' to it...oh well! He went over the most common side effects of the new drugs: Skin rash, diarrhea and hair loss. Up to this point I had been okay with the prospect of loosing my hair...maybe because it was not a common side effect of my first drug. When those words came out of his mouth, I was surprised that I had to try really hard to hold back the tears. What's the big deal after all? It's just hair, I know it will grow back. Whats more, that's probably the easiest of those three side effects! Well I held it together until I left the Dr.'s office, and as soon as I walked out the water works started. As I walked to the car with my dad we passed an older woman who I could tell was bald under a hat she was wearing. I made brief eye contact with her, and that 'cancer connection' said a thousand words, that I would never be able to express on my own. I looked down, slightly ashamed, and she stopped and put her hand on my shoulder and just said, "It's okay hun, I had a bad day yesterday too. You'll be alright, I love you." I smiled and thanked her and thought about how amazing the connection one cancer patient feels to a fellow cancer patient is. I really don't think I could even start to explain it...I guess it's just complete empathy.

So I've had some time to ponder on why I had the reaction I did. Number one, I wasn't really prepared for it. I thought my treatments were going well, and that the tumors were continuing to shrink etc.(they still are so far as we can tell) so it caught me a bit off guard. Number two, I think I have been lucky enough to hide behind my hair up to this point. I can go out in public, and it's like I have this 'secret' that unless someone knows me, would never guess. Now its going to be harder to escape the fact that I'm dealing with this. I had my cry, and I'm over it...I'M GOING BALD! :) :) :)

A funny little story...after my doctor told me that I'd most likely be loosing my hair he quickly said, "I'll write you a prescription for a wig". I thought it was some kind of lame joke. He wrote out a few prescriptions for the rash etc. and after the appointment my mom went to pick them up for me from the pharmacy. When she did the pharmacist said there was one that she couldn't quite make out, and asked my mom if she knew what it was supposed to be...the only words they could make out were "scalp". Well, it turns out it really was a prescription for a wig! Hahaha. They don't fill that at CVS :) I guess insurance will cover a portion of it...who knew? If only I could get them to cover all of my surgery!! :)

So wrapping this all up, I haven't actually started the round yet. Dr. B wanted me to confirm that my surgeon would still go forward if he started me on this new cocktail. I haven't heard back from her yet, but hopefully I'll start it either Wednesday or Thursday with her blessing. After surgery I may go back to my old regiment, but we'll cross the bridge when we get there. Until then, I'm going to brush my hair :)

UNDY 5000 Update!!
My dad created a team for the event called "Susan's Friends" so if you're participating, put yourself on the team! Here's the link. See you November 15th!

10 comments:

THE MORTENSENS said...

Susan-You'll still be beautiful-with or without hair! Praying for you as always-

Our Family said...

Stay strong, Sus!! We love you and are always here for you. You have so many people fasting and praying for you. Please remember that. I know I don't really know what all you're going through, but I do know that Heavenly Father has a plan for you and that He loves you. Keep up the faith. :)

Brew 2 said...

Susan - you inspire me. It's quite a thing to put your story out to the world like you do. This post made both Carl and me cry. We love you, too.

I bought a Hannah Montana wig this weekend for $5 and I love it - but you can have it if you want it. :)

Andréa Morrow said...

hey, hang in there..if my hair was long enough, I'd donate it to you :) I totally understand what you mean by the connection between other patients..I got that with other moms at the hospital

scott and lindsey said...

Suz- you're gonna look pretty fantastic wihtout hair- even better than Demi! Scott and I are praying for you every day and we know that the Lord is blessing you. Stay strong and hopeful- we are! You are such an inspiration and I know that this experience has changed your life in a way that I can not imagine. You have such a determination and will. We love you and are thinking of you. xx

Kyle said...

Stay strong Susan! You are so brave! And beautiful...with or without hair!

hlmortensen said...

I love the story of your connection with the other cancer patient. I am glad that there are people out there that can really relate like none of us can. I know you will pass on that sweet support to someone else with cancer sometime. You will be beautiful if you're bald too! You are doing an amazing job of dealing with and coping with the changes and losses and ups and downs of all of this. Keep it up buttercup! ;)
Heidi

Mike Steph Brooklyn and Carter said...

Suz I love how you share so much with us, it's great to know what is going on with you and how you are feeling. I am sure you are a little worried about loosing your hair but you are so beautiful with or without hair and you know you will have it back soon enough. Unfortunately it is just part of this ugly thing called cancer but you are so strong, such an inspiration to us. I love you girl and am so grateful for the strength you show all of us!

Anonymous said...

Susan, Brother Eric Kraus here.You know (Craig, Alisen, Shayla). I have been following you fight. I must say the story of running into the bald Lady as you were leaving brought me to tears. What a special experience to have during what may have seem like bad news. To me the story says Just how much the Savior Knows and loves you. It is said that we should laugh and cry every day of our lives, your sharing of your Battle has bless me and others greatly Thanks for your great example and faith. God Bless Love Bro Kraus

David and Alissa said...

This post made me cry and laugh. I can't believe how humble you are. You truely are amazing Susan! Hey, I've heard that after cancer your hair can grow back differently due to the changes in your body, like thicker and even prettier! So there is a posible plus to that :)