Thursday, October 23, 2008
Update #4
Rendezvous! We had to wait a while to get Susan her own room. My parents, her parents and I passed the time playing too much sudoku and iPhone games. We just came up and have been chatting with a half drunk-like Susan :) She's very pleasant and smiley, stark contrast to this morning when she had lots of pain and no drugs. Now she has very little pain and lots of drugs. She's going to keep resting now, she's having a hard time keeping her eyes open. We saw the scars. It's pretty amazing, she has four little band aids covering all the tiny incisions.
Update #3
We just spoke to the Doctor. She told us everything went well with no suprises, and she was able to do it laprascopically. Susan is now in the recovery room doing none other than recovering. They will let us see her as soon as she wakes up and is transfered to her room.
Now we're just impatiently waiting for a few more hours.
Now we're just impatiently waiting for a few more hours.
Update #2
Susan's been in a lot of pain lately, but you wouldn't know it because she doesn't like to show it. She wasn't able to sleep at all last night. She was nervous for surgery, but this morning she was just looking forward to being put to sleep for the next few hours. She was just taken back to go take her "nap" (surgery) a minute ago.
Surgery updates from the iPhone: Update #1
I was told to keep the blog up to date while Susan was unable to. We are here bright and early at the Scottsdale Mayo. We had to be here at 5:30 this morning. Susan is back getting prepped and we are just waiting till they let us see her before surgery. Sitting here this early I figured I could try and rest in these uncomfortable chairs or I could play with my new birthday present. I don't know if this blogging from the iPhone is going to work tho, my thumbs are already getting sore.
Friday, October 17, 2008
Surgery then Chemo
I spoke with another Surgeon at Mayo who is either a resident, or working with my Surgeon...I haven't quite figured it out. Anyway, he was in the consultation appointment when I met her and since she was out of the office until Thursday, he had been trying to help me...offered to call my Oncologist to work something out etc. He was pretty animate that Dr. Young-Fadok would not go forward with the surgery only two weeks off of chemo.
So I waited while they fought over me :) One potential solution that we had come up with was to see if they would move the surgery forward if they really weren't going to budge on two weeks...I wasn't getting my hopes up that she would have an opening in her schedule with such short notice. She did have an opening, so this is what they ended up compromising on. My surgery is set (hopefully for good this time!) for next Thursday, October 23rd. Just about 3 weeks out of my last Chemo. I'll go in on Monday for all the pre-op tests.
She'll be starting off laprascopic, and if needed it will move to traditional. We ultimately decided on going this route for the quicker recovery time, and that means I can start chemo up slightly faster if all goes well. About a foot of colon will be removed and they will just reattach to my small intestines. The average length of stay for a colon resection is about 5 days. The only real requirement to be discharged, if I understand it correctly, is breaking wind/having a bowel movement. That means any visitors should be aware in advance that I'm not holding anything in :) So really, what else is new the last three months?!
In other good news, my secondary insurance, who Mayo is a contracted provider with, will be covering more than I originally thought, so our out of pocket is going to be minimal. Hooray! Everything has just been falling into place so nicely, so it makes us think we've made the best decision to have it there. My good friend Rachel, who is a nurse at Mayo, wrote and told me that she usually gets colon resection patients on her floor post Op...I'm keeping my fingers crossed, I think that would be pretty cool :)
Its been a while since I posted a picture. Here is Justin, my juicer.
I have a lot of faith in the good nutritionists of the world, but I will admit I have not followed their advice for me very closely. Back in MN, they advised me to eat as high of fat diet so that I could to put the weight back on I had lost. I've never eatten like that and quite frankly it made me sick drinking, yes drinking, cream. I tried to add a few new higher calorie things to my diet (more ice cream!), but I think continuing our pre-cancer diet has helped me out tremendously. We're by no means perfect, we still eat out occasionally, and 100% of our food is not organic, but we really try to eat a minimal amount of meat and sugar, and lots of veggies etc etc. I've gained back about 1/2 of the weight I lost in the beginning...so I still have a little ways to go, but I feel so much better when I eat this way.
I have to send out a huge thank you to all the people who have joined the team my dad set up for the UNDY 5000, and to those of you who have donated so generously to the cause. So far as I can tell, the team is one of the top 3 fundraisers! You're amazing!! I'm glad that my surgery has been moved up so I'll have a little more time to recover before the event. I'm so excited!!
Hope you all have a great weekend. Thanks for your prayers and support!!
So I waited while they fought over me :) One potential solution that we had come up with was to see if they would move the surgery forward if they really weren't going to budge on two weeks...I wasn't getting my hopes up that she would have an opening in her schedule with such short notice. She did have an opening, so this is what they ended up compromising on. My surgery is set (hopefully for good this time!) for next Thursday, October 23rd. Just about 3 weeks out of my last Chemo. I'll go in on Monday for all the pre-op tests.
She'll be starting off laprascopic, and if needed it will move to traditional. We ultimately decided on going this route for the quicker recovery time, and that means I can start chemo up slightly faster if all goes well. About a foot of colon will be removed and they will just reattach to my small intestines. The average length of stay for a colon resection is about 5 days. The only real requirement to be discharged, if I understand it correctly, is breaking wind/having a bowel movement. That means any visitors should be aware in advance that I'm not holding anything in :) So really, what else is new the last three months?!
In other good news, my secondary insurance, who Mayo is a contracted provider with, will be covering more than I originally thought, so our out of pocket is going to be minimal. Hooray! Everything has just been falling into place so nicely, so it makes us think we've made the best decision to have it there. My good friend Rachel, who is a nurse at Mayo, wrote and told me that she usually gets colon resection patients on her floor post Op...I'm keeping my fingers crossed, I think that would be pretty cool :)
Its been a while since I posted a picture. Here is Justin, my juicer.
I have a lot of faith in the good nutritionists of the world, but I will admit I have not followed their advice for me very closely. Back in MN, they advised me to eat as high of fat diet so that I could to put the weight back on I had lost. I've never eatten like that and quite frankly it made me sick drinking, yes drinking, cream. I tried to add a few new higher calorie things to my diet (more ice cream!), but I think continuing our pre-cancer diet has helped me out tremendously. We're by no means perfect, we still eat out occasionally, and 100% of our food is not organic, but we really try to eat a minimal amount of meat and sugar, and lots of veggies etc etc. I've gained back about 1/2 of the weight I lost in the beginning...so I still have a little ways to go, but I feel so much better when I eat this way.
I have to send out a huge thank you to all the people who have joined the team my dad set up for the UNDY 5000, and to those of you who have donated so generously to the cause. So far as I can tell, the team is one of the top 3 fundraisers! You're amazing!! I'm glad that my surgery has been moved up so I'll have a little more time to recover before the event. I'm so excited!!
Hope you all have a great weekend. Thanks for your prayers and support!!
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!
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!
Saturday, October 11, 2008
Colon Cancer Event
I've been meaning to post information about this event for some time, and realized it's not too far away so I had better get on the ball!The Colon Caner Alliance is sponsoring a 5K and 1 mile fun run in 3 US cities, and one of them happens to be right here in Tempe at Kiwanis park on November 15th! My cousin, Anna, is running in the same race on November 1st in Dallas, TX...I had to give a shout out to her, and running buddy Stacey who is recruiting people to run here! :)
I have every intention of attending, even though I won't be running. It has kind of a fun spin, that I hope turns out okay! They encourage runners to run in their (appropriate) underwear, and instead of getting the typical race t-shirt, participants get a pair of boxers. The goal is to "do something outrageous to raise awareness about colon cancer". Kiwanis isn't the most public of places to make a scene, but all the Saturday morning park goers are in for a real...uh...treat? :) Of course you can run/walk in your normal work out clothes too.
If you're interested in running/walking you can click here for more information and registration. And be sure to let me know if you are, so I can cheer you on from the sidelines!! :)
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