Friday, October 31, 2008

Update #12

If I could just wake Susan up maybe we could go walk around the floor, knock on other patients doors and trick-or-treat. But I can't wake her up. She was given Ativan last night to put her to sleep and it seems to be still working. All day she's been so tired, she struggels to even keep her eyes open..... Quite funny to watch actually. Her brother Mike stayed with her last night and he said the sleeping drugs that she was given had some weird side effects. She was having a lot of vivid dreams and a couple of times Mike found her at the edge of the bed (I think even out of her bed once) trying to escape, confused and unaware of where she was. As funny as that seems, it could have been dangerous and she could have hurt herself. It was probably a good thing Dr. Mike was with her last night because he's more familiar with the drugs and their side affect and how to deal with crazy patients.
Between naps today she also went on a few walks and was even able to get back into bed all by herself!

Wednesday, October 29, 2008

Update #11, Round 2

Sorry for keeping everyone in suspense, I know there are many of you. I haven't been able to update lately. Susan had a good day today. Yesterday she got a PICC Line put in (a catheter from her inner arm to her heart). I swear can she have enough holes and tubes put in her, I now affectionately call her my little holey semicolon :) They are using the PICC to inject nutrients directly into her, such as proteins, lipids, and vitamins. She's been able to get up and walk 3 times today. It's a little more of an event now, she has more tubes hanging off her this time. The surgeon gave us an explanation of why they think she had the internal bleeding. After the first surgery the doc saw no bleeding and her blood tests showed no indication of not being able to coagulate so they closed her up without concern. After, they were giving her Heprin shots to help stop any blood clots that might form from sitting so much, but this caused a problem in her colon were the defect was and it couldn't stop bleeding.

Tuesday, October 28, 2008

Update #10, Back to Surgery

Before now I never thought I would be a blogger, and now here I am blogging at 2am.
Yesterday morning they decided to give her a blood transfusion because her hemoglobin levels were low. Seemed to respond really well to that, her heart rate went down and she slept better then she had in a while. That didn't last too long. Around noon the pain and swelling got worse and her heart rate went back up. I realized there was reason to be concerned when around 9pm her room was full of people wearing suits talking about what we needed to do next. There was concern that a hematoma (blood clot) was causing strain on the anastomosis (connection), and if that was the case it could result in junk leaking out and a really bad situation. They decided to be proactive and go back in and fix it up. The plan was to disconnect the large and small intestine and do a ileostomy (colostomy bag) allowing her to eat and get more nutrients and heal faster, then later go back and reconnect the bowels. Surgery started at around 11:30pm. The surgeon came in at 1:30am to tell us the results. He said all he found was that the connection from the last surgery had a small defect that was only detectable when he squeezed it. It hadn't leaked yet but when squeezed stuff was able to come out. After removing the hematoma and seeing what he had to work with, he felt good about not doing the ileostomy. He said the large and small intestine were still in good condition, so he decided to just stitch it up the old fashion way. They normally use a contraption that staples it all together. Hopefully now she will be in less pain and will be able to heal normally.... Hurray for no colostomy bag! We should be able to go see her soon. So much for the laproscopy though.... they had to open her up for this one.

Sunday, October 26, 2008

NG Tube

Update #9

Last night was no fun for any of us. Since Susan's bowls are not working and moving stuff through (the doctors say they are asleep) she's getting backed up and it's causing a lot of pressure. Even without eating the liver, stomach, and gallbladder can produce a liter of liquid a day. And since her bowls are sleeping they had no where to go. It got a little too much to bear so they had to put a NG tube down her nose to drain all the gastric soup. Now that the pressure is down she feels a lot better.

Saturday, October 25, 2008

Update #8, Slow Progress

Susan is progressing slowly, although the doctors say she's right on schedule. She started seeing swelling in here lower left abdomen last night and it has slowly gotten worse to the point of causing pain. The docs were concerned so they ordered a CT scan. They saw some bleeding in the anastomosis where the small and large intestines were reconnected. Which is most likely causing the inflamation. So she won't be doing her routine jog arround the building, she's supposed to take it easy today.
She just continues resting, we didn't get much sleep last night.
Still no farts. Pray for flatulance!

Friday, October 24, 2008

Update #7, Running Laps

I had a hard time keeping up, I had to hold on to her gown to slow her down!

Update #6, She walks!!

I was unable to stay at the hospital last night. She was not alone though. Thank you Janet for staying with her. I talked to Susan this morning, and everything seems to be going well. Today was the day they were going to have her get up and try to walk. She got to walk earlier than expected though this morning around 4am, not because it was the right time, but because they were trying to keep her awake and breathing :( Susan took a little too much pain killer last night. It caused her to relax a little too much which slowed her breathing in her sleep to about 10 breaths a minute. Not so good, so they needed to keep her awake. Susan asked if she could try to walk, she did a few laps around the floor. She was walking slowly then she pushed her mom and nurse away and started running to the elevator trying to escape. Part of that story may not have really happened, I had a hard time understanding her on the phone early this morning. One of us must have been on something.

Thursday, October 23, 2008

Update #5, Recovering Susan

Here's Susan after surgery trying to stay awake.

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.

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 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!

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!! :)

Wednesday, October 1, 2008

1/2 Way Through My Chemo Mile

Can you believe that yesterday I started my sixth chemo treatment? I hardly can! At times 'the finish' seems so far away, but for the most part the time between treatments really seems to fly by...its really turning out to be just like running a mile race, and I know I'll be done with 12 before I know it! Round five may have proved to be my most challenging yet.

I hope this counts as 'pictures' this post...I haven't taken any of my outsides for awhile. Here is the CT Scan from back at the end of August. I tried to choose a slice of myself that compares apples to apples of the first scan picture I posted a few weeks ago. Just to save you the hassle of scrolling, I'll re-post it.

1st Scan 7/08

Latest Scan 8/23/08

My mom was over at my house when we took a look at the entire scan...and it was pretty exciting to see tangible evidence that the chemo is working and doing its job. We both got a little emotional scrolling through my insides. I chose this particular one to compare because there are three pretty big tumors in the first scan, that you can see are noticeably smaller in the second. I still have quite a ways to go to get rid of all the additional ones not visible here, but I'm very encouraged seeing it for myself...I've said it before and I won't stop saying it, I know your prayers are helping.

I mentioned above that round 5 has been a bit of a challenge. I have felt the side effects more this round than the others, and the pain that I had all but forgotten that really led to the diagnosis was back this round. If you remember back from my ER visit while in Mayo during my first round, the doctors said that the pain could be a sign the chemo was working on my it's hard not to think that my pain returning could be a good thing... its what I try to tell myself :)

My mom went with me to my pre-chemo doctor appointment yesterday. We're getting to practice a little bit of extra faith after hearing the counts from my blood work. I've been mentally preparing myself, just like my doctor warned, that there may come a day when my counts go back goal to stay positive and not to get discouraged. Yesterday was the day (probably not the last), and its been a challenge! The hardest part about seeing 'those numbers' go up from the previous blood work is wondering what the reason may it because something is wrong, is it a coincidence, is it because I had to take a few pain pills to get me through, I ate beef the day before the blood test (first time since July!), have I been slacking in my diet too much, is my faith waning, is it because I went off the Avastin? A person really could drive themself crazy trying to figure it out. So I've tried to put it out of my mind.

Dr. Bachrach was slightly concerned, and said its even more urgent to have the surgery as soon as possible, so that I can start back up on the Avastin as soon as possible. My dad did me a huge favor and called the oncologist I saw at Mayo, MN who agreed with Dr. Bachrach's course of action, to have the tumor out ASAP and start back up on Avastin. Dr. Bachrach has been keeping him in the loop as really makes me feel good to see them working together, like they really care about me as a patient and have no egos to worry about.

My CEA went from 5.5 two weeks ago to somewhere in the 7s, and my liver enzymes were also up, along with a few other numbers that I can't remember. I have my final two consultations with potential surgeons next week, and after I decide who, I could be having the surgery the week of 10/13. Still haven't made up my mind on laprascopic vs. far leaning more towards traditional to give the surgeon a chance to take a better look at my liver, and make sure he/she doesn't miss any affected lymph nodes...but I'm waiting to hear out these last two Dr.'s opinions.

I'm having another CT scan this Friday, pretty anxious to see what is or isn't brewing inside of me! :)

I've been pretty horrible at responding to emails and returning phone calls lately, so I wanted to give a big thank you and I'm sorry all wrapped into one. I'll get around to responding eventually, just wanted to let you all know they are being received, and they are very appreciated :)

Much love and thanks to all of you for your support and prayers :)