Update

The day after arriving in the hospital after receiving the IV nutrition, she seemed to improve pretty fast, feeling better and just all around more normal. She had the catheter installed in her abdomen to drain the fluid. We haven't been able to remove much fluid yet, though. Since that procedure she has not really fully woken up and is not mentally all there. That was done Wednesday. We have also learned that because of the long break from chemo the cancer has gotten worse and has spread more in the lungs and to the adrenal glands. It's hard to say for sure, but her decrease in cognitive function is probably related to the build up of all the pain meds she's on, her electrolyte imbalance, her sick liver, adrenal gland and kidneys. She's also much weaker despite the IV nutrients.
We are having a family fast on Sunday and we invite all of you to join us.

I forgot to mention that her Oncologist decided he didn't think it was a good idea to delay any longer the chemo treatments, but also didn't want to give the full dose yet. So last night she started with only the drug Erbitux, which is an antibody that is supposed to target cancer cells and slow their growth. Other then extreme fatigue, she ha had no other side effects yet.

Back in the Hospital

I guess I have to start doing updates again; Susan's back in the hospital. We had a disappointing weekend. After having the fluid drained on Friday, we had big hopes that having done that she would have relief and be able to eat and catch up on the needed nutrients and calories she was missing because she couldn't eat due to the distention. Turns out that the fluid just came right back in less then a day causing discomfort all over again. Real frustrating for Susan. The procedure is painful and she was hoping to get relief and a new start but didn't get any. She wasn't able to eat much all weekend despite our best coaching efforts. By Sunday she was noticeably weaker, so we decided the best thing would be to get her back on TPN (IV nutrients) on Monday. It was a good thing we did. After doing more blood work, we also found out that her electrolyte balance was off (sodium low, potassium high), which is very dangerous if not dealt with carefully, and her white blood cell count was quite high (sign of infection), and she was dehydrated, and malnourished. This time we're not at the Mayo we are at Banner Dessert where her Oncologist is. The Doctors here have been really good at looking at the whole picture and they helped us understand better what is happening. A lot of things that are going on with Susan are having an additive result and negatively effecting her. We learned that the reason the fluids built up so fast was that she was already malnourished and lacking calories and protein along with a sick liver. Protein in the blood helps the water stay in the veins. Since there was no protein, the fluid built up in the abdomen. Then, because the fluid built up again she wasn't able to eat, causing more malnutrition, dehydration and weakness. To help stop the fluid from building up in her abdomen she has been on two diuretic drugs for the last 3 or more weeks. Sometimes diuretics may cause the kidneys to excrete more sodium than water, resulting in low sodium. This in one reason she felt so week and confused. One of the diuretic drugs she was on also had the effect of reducing the amount of potassium excreted by the kidneys, resulting in high potassium, a dangerous situation. The fact that we were feeding a diet high in potassium probably didn't help either. I'm sure this is a very simplified explanation of a complex problem, but it's beginning to make more sense why progress is so slow. After being on the TPN for only 24 hours you can tell a big difference in her. She's actually making some jokes and her little attitude is starting to show through. We heard that if she's here over Thanksgiving they can give here liquid turkey and mashed potatoes in her IV. She's real excited.

A week and a half later

Well, it's me again, Justin. I thought my blog updating duties came to an end when Susan came home, but she still doesn't feel well enough to sit in front of a computer. She spends most of her time sitting in the lazy boy chair sleeping and sipping on high calorie concoctions, and nibbling on other high calorie dense foods. I wish I could say her healing situation has improved by leaps and bounds since a week and a half ago, but it seems to be moving at a snails pace for Susan. More like a really slow roller coaster, with all the ups and downs. She had been eating well, for most of a week, but the fluid continued to build up around the bowels which is painful and made it hard to eat because there was no room for anything else, which also makes the #1 and #2 functions more difficult. She hasn't said anything about how much detail I include in the posts, but I wonder how she really feels about me painting this mental picture for you about her bodily functions? Who knows how I would feel if I were in her shoes, but I think it's a good thing for everyone to know what to pray for. By the way thanks for all your prayers. I know there are many!! By the looks of the map to the right they come from all over. I got off topic. Because the fluid in the peritoneal sac, she was unable to eat or get comfortable, so today we went to the hospital to get it drained again. The last time was about two weeks ago and they removed 2.5 liters, this time they only got out 1.5 liters.... "only". Doing this brings immediate pressure relief, but it also brings a different pain soon after as the bowels readjust, which has been almost unbearable today. :( Hopefully tomorrow will be better.

I also need to make mention of the Undy 5000 which was a huge success for the cause and for our Team! Thanks so much to everyone who came out and supported us. It was awesome to see so many there sporting the "Super Susan Semi Colon Friends" shirt. The picture of Susan flying in her cape and underwear was not a photoshopped picture, except for the flying through the sky part (she can't really fly). In college her and her friends actually dressed up like that, undies and all, and took pictures while they jumped superman style onto a bed. That's what track girls do on weekends in college I guess. How fitting of a picture though, she must have had a premonition.



Talking about praying above and the Undy 5000 reminds me of someone who stopped me as I was walking (woddeling) back to my truck after the race. As I was about to leave I was stopped by a lady who introduced herself to me as Robyn. She said she knew a common friend of Susan's (Natalie) and, also, knew a common friend that we met at the Mayo hospital (Kim Miller, cool story that I need to wright about and soon will, I thought I'd leave that for Susan, but it looks like I may be doing it). Robyn's family and friends were wearing the Polyp Patrol shirts.... Almost as creative as ours :) JK. We spoke for a minute, during which she let me know that she and her family and friends had been praying for Susan, even though they hadn't even met her. They had heard about her and her condition from Natalie, who also knows Kim, who has almost the exact diagnosis as Susan's. Sorry if that's confusing, but it was really nice to hear that so many people are praying for you Susan, even people we don't know.

Last Update...... She Escaped!!

We were finally able to sneak her out today. It's really nice to have her home. I was really starting to dislike the smell of that place, but that's not the main reason I'm happy.

Yesterday they took her off her IV meds, and liquids, and disconnected her from all the tubes, and wires, etc. Now she's taking oral medication for the pain management. They gave her a new drug along with the ones she's been on for the last 3 weeks.... actually 4 months. This new drug makes her real sleepy so now she sleeps even more. Having a conversation with her is fun. She'll be awake talking, then you ask her a question and wait for a response and.... nothing, she fell asleep.

I know many of you would love to see her, but she's still not feeling 100%. She asked me to let everyone know to hold off on any visits for now. Hopefully she will be able to make it to the Undy 5000. Here is a pic of her last meal at the hospital. (If you look behind her you can see the white board with all the times, it had been cleaned up and organized after the first erasure).


Speaking of the Undy 5000, we hope to see many of you there Saturday morning. I can't remember if this had been mentioned, but T-shirts were donated for Susan's cause for us to wear at the "brief" run. We are planning on handing out the t-shirts at the race somewhere around the registration table, so keep a look out for us.

Thanx for following the updates from the iPhone (most of them anyway).

Justin signing out.

Update #too many

Hopefully the updates will be ending soon, so I decided to stop counting. There were way more then I first thought there'd be when I was first pressured.... I mean agreed to do this :) Susan won't be coming home today as we hoped, but now the doctors feel like Wednesday will be the day! Her pain is being managed much better now. They've changed her drug dosage and timing, and even added a new one so that now she feels better, and is also sleeping better (with out so many of the hallucinatory dreams). She hasn't tried to escape again, thankfully.
It's almost been 3 weeks now and Susan has gotten to know a lot of nurses, some have been good and some have been not so good. Last night she had a nurse that happened to be added to her "poop list". After being here so long without the ability to do much she has had to find ways of occupying her mind. One of those ways was keeping track on the white board of all the times for her events: walks, bowel movements, pees, "fluffs", and various other things. It didn't always makes sense to the rest of us, but it made sense to Susan. Last night she got a new nurse that she hadn't had yet. She walks in a the beginning of the shift change and looks at the board and asks "what's this mess, can I erase it?", the other nurse just told her to leave it, and we told her what it was. This morning while Mike and Susan were out for her morning walk, the nurse went into the room and erased all of the times on the board. Needless to say Susan was irritated and now doesn't like that nurse. Jerk.

Update #16, No More Holes Please

Susan has been suffering from a distended belly which is called ascites. Ascites is where fluid builds up in the membrane sac (the peritoneum) that holds all the guts in place. They were hoping that by giving here drugs to reduce water retention her body would get rid of it on it's own. It was getting so uncomfertable they decided to do a procedure called paracentesis where they insert a tube into the peritoneum, with a puncture through the belly, to drain the built up fluid. It's hard to believe, but they drained 2.5 liters from her little belly! (10 lbs worth) As it drained she immediately felt relief followed by extreme cramping as the bowels readjusted. Since then she's been able to take deeper breaths and she started feeling hungry again. She's slowly trying to make her way up to 1500 calories a day.

Update #15

Not a lot has changed, at least not as fast as Susan and all of us hoped. The swelling has gone down, but there is still a lot of fluid build up in the abdomen area. The pain and discomfort seem like they will never go away. She got her staples out from the second surgery this morning. The NG tube finally came out yesterday also. She's now eating clear liquids and small amounts of soft foods. Hopefully, if all goes well, the surgeons want to kick her out of here on Monday. They said she has over stayed her welcome. Let's hope for Monday.

P.S. She farted yesterday!!

Update #14

Sorry about slackin on the updates, I have two other jobs besides this one.
It's been a rough road and it's almost impossible for Susan to not get discouraged, she does a pretty good job though at putting up the facade. Like others have mentioned in their comments, we also didn't think this would be such a long drawn out event, and this is what's causing the downers for Susan (and all of us). She's still having a lot of pain and distention in her belly, and swelling in her lower back, which is very annoying because she has to lay all day on it. This also makes it impossible to get a complete nights sleep. The doctors seem to think that all of this is normal though and will continue to slowly recover. They've done blood and urine lab work and another CT scan and everything is looking good.
Also, to let you know, Susan is proudly wearing her "I Voted Early" sticker on her gown tonight. Boy is she patriotic.

I was asked to re-post the link to the Undy 5000 run November 15th, so here it is:
Susan's Undy 5000 Team

Update #13, She Pooed!!!

Thanks to Anna Mortensen for the awesome T-shirt. As you can see by the NG tube she's still not eating, at least not through her mouth. Her bowels are working none the less, as we found out today! It has been a discouraging roller coaster for Susan, but this is another step closed to the finish line and she feels quite "relieved" for having reached this new milestone.