Some good days, some bad days

Today has been a good day. I managed to eat a bit at each meal and the nausea seems to have passed, for now. On the downside my drain is painful still. It hurts to do just about everything except lie in bed (and even that hurts sometimes too!). I went for a walk today with my dad and I felt quite sore. Up to now walking has been relatively painless. Monday will be the day we find out what will happen with the drain. They will either pull it out after deducing that it has served its purpose OR they will re-position it to get some more fluid out. Obviously pulling it out is my preference!

I have had lots of visitors today. Penny spent the morning with me just hanging out. Even though I'm stuck in the hospital I still appreciate every second we spend together. Her mere presence relaxes me and makes the time pass in a pleasurable way. Vicky came to visit just before noon. She did some reiki on me which is also very relaxing, in fact I fell asleep half way through. Thanks Vicky, its such a relaxing experience and I truly appreciate the time and effort you put out each week to come and see me. My dad showed up this afternoon. It was great to hang out and chat and play cards. It was a relaxing time. Penny's mom Sandi came by too for a short visit. Overall its been great to have visitors as it takes my mind off what's going on. So if any of you are up for a trip to hospital it would be great to see you. See Penny's post below for the details of my location.

This has gone on long enough....

Well this is definitely proving to be a much harder surgery to recover from than anyone thought. Dan has a good day followed by a few bad days. It really feels like he has to slide backwards in order to get ahead. Mentally this is very hard, as I'm sure you can imagine. New territory for all.

Dan had a day pass yesterday to come home for a few hours. While this felt amazing, it took a lot out of him, even though the visit consisted mostly of a nap on the couch while the kids played on and around him. He returned to the hospital feeling quite ill, and had a rough night. Eating is again nearly impossible.

Dan's spirits need lifting, and so we're reaching out to friends. Come visit please (I think he's getting sick of me... ha!). He looks great, only one IV connected for fluids. Be forewarned he has lost about 20 pounds, and as he has said himself he looks much like Tom Hanks did in the movie Philadelphia. Boy I got some cooking to do when he gets out.

Dan's at the foothills, main building, Unit 102 - 10th Floor, Room 1061, his bed is next to the window. Best to e-mail Dan to coordinate a time, dan.tutt@encana.com

Feeling ok

I'm feeling pretty good today. Things seem to be going well. I was even able to eat 3/4 of my egg salad sandwich for lunch! There has been talk of me getting out of here on a day pass for tomorrow but I will believe that when I see it. The plan is to do another CT scan on Monday and see if my drain has drained all that it was supposed to. If it hasn't then they will reposition it and keep monitoring it for another few days. My guts are waking up slowly and seem to be getting used to the idea of processing food. I'm still not back to normal but I'm miles ahead of where I was ten days ago.

I hope you're all staying warm!

Hard day

Today has been good and bad so far. The best part was that Penny was able to spend all morning here (6am-1pm) to help me talk to the doctors, have a pseudo shower and shave and talk over the treatment. I had my CT scan last night and it showed that not all the fluid had been drained out of the collection near my rectum. So the doctors are talking about sending me back down to have my drain re-positioned. The prospect of this is not a nice one in my brain. It is very painful to lie on the CT machine while they play with repositioning the drain. They will give me something for the pain but it never really does the trick. I guess on the bright side, they have identified a problem and prevented it from getting much worse than it is now. As much as I hate being in here I would hate more to be home for a couple of days only to return to the ER in lots of pain and have to wait for a bed.

My ostomy output has increased again to around 2L/day which is twice what it should be. This combined with my distended belly caused my doctors to pull me off food for now. We are playing a waiting game with my guts, gently urging them to get back working as usual. I really hope it all happens soon. So now with my drain needing repositioning and my food intake cutoff it seems heading home might not be in the cards for this week. I won't even posit a guess this time as to when that will happen. I'm just taking it one day at a time.

A Few Thank You's

Thanks to the Lakeview East team at EnCana for the freezer FULL of food and this awesome edible arrangement. It was so beautiful I had to take a picture. This is still being enjoyed in our house (the kids love it) and even Dan has enjoyed some too... he's not eating too much yet.

We have certainly been showered with food these past two weeks, and every last morsel is so greatly appreciated. My trips to the grocery store are pretty much none existent as my car seems to only know one route, to the Foothills and home. Thank you to everyone who has helped. We are very blessed to have so much support.

Dan and I would really like to thank our parents for such an enormous amount of help these past 2 weeks. From all hour shifts at the hospital so both Dan and I could rest better, to babysitting at all hours, to ferrying kids around, to just about anything. All 4 of them became whatever was needed. We couldn't have done this without you!

Hoping for a CT scan today

They have me on the list for a CT scan today. The purpose will be to evaluate the effectiveness of the drain that was placed near my rectum to see if it has drained all the fluid it was supposed to. If it has done its job and the fluid is gone then hopefully I can get this drain tube out. Its a real pain in the butt and makes sleeping and sitting very painful. They say the CT machines are overbooked today so I may not make the list to go today but I should at least be able to make it first thing tomorrow.

Penny was here this morning and we had a great discussion with all my doctors today. We discussed the plan for the next few days and we all seemed happy with the outlook. It's funny because the program from here on out is not very scientific. I need to get off all immodium and codeine before I go home and still maintain a reasonably low ostomy output so I don't get dehydrated or develop an electrolyte imbalance. But the exact timing of the removal of those drugs and what is considered "reasonable low" ostomy output, varies from Dr to Dr. So all my doctors have slightly different ideas on the timing of my recovery plan. It can be quite frustrating to ask the same question to five different doctors and get five different answers.

Day 14

I'm feeling much better these days but things still aren't working 100% as designed. I'm only connected to this hospital by 2 IV lines these days which is much fewer than last week. It makes for much better mobility too so I can walk around and get out of bed much more easily theses days. My ostomy output has slowed significantly so I can manage it pretty well myself. My main complaints are 1) my stomach is still distended and sore. It's hard to eat more than a few bites at a time without feeling full. 2) the drain they put through my bum muscles into the space near my rectum is very sore. It seems I'm always sitting on it or sleeping on it and it is very sensitive. Hopefully the drain will come out soon. It's looking like I will be here for the better part of the week at least but only time will tell.

I'm actually able to enjoy parts of my days here now. I have met a few other patients in similar circumstances and we spend our days comparing notes. My roommate is an 86 year old hockey aficionado. He loves watching the Flames and has a grandson who plays for the Oilers farm team. His family is very close and there is a constant stream of loving, caring visitors through our room. He spent a good portion of his life volunteering in junior hockey around the city. A couple of years ago the city, in recognition of his efforts, named an arena after him. I think the Murray Copot arena is somewhere in the northeast part of the city.

Happy Monday!

"Would you like me to make your day?"

Feels like things are going well today. My doctor woke me up at 6:15 this morning and said "Would you like me to make your day?". Of course I said yes so he proceeded to remove my NG tube. I"m like a new person now. For those of you who have had one, you know that the best part about an NG tube is the time it gets taken out. They flat out suck. Also, the Dr put me on a soft diet today so I had some orange juice, coffee and a pretty good carrot-pineapple bran muffin for breakfast. Things are going well so far but I'm not counting my chickens...

Also, the drain they put into some tissues around my colon showed no signs of infection and my ostomy output has decreased significantly. Both of these are very good news.

Still Here

Its been an emotional roller coaster so far. Lots of questions. No straight answers. Everyone has their own version of how things need to be and when things need to happen. Its seems (although it is totally counter intuitive to whole idea of health care) that the patient seems to be left to the bottom of the list every time. Don't get me wrong, there are great doctors and nurses here but it seems that the system itself is sluggish and overwhelmed.

To tell you the truth I couldn't come to relate in any detail to you the reader the events of the past 10 days. I have simply been too overwhelmed. I've had tubes put everywhere, tons of medication (some fun, most not), panicked nightmares, assorted tests and constant interviews with different doctors, nurses, fellows, attendings, lab personnel and porters. It's been stressful all the time and sleep comes infrequently and in short spurts.

There are a couple of issues the doctors need to solve before I will be given permission to head for home. The first is the fact that my new ileostomy doesn't seem to be working exactly as advertised. It seems to be putting out pure liquids only. The doctors seem to think this suggests a partial blockage. Their usual treatment is just to wait and then things seem to work themselves out. The second and slightly more worrisome issue is an infection I seem to have acquired (my WBC count was rising until today). I feel fine (fever wise i get some hotflashes but that's pretty much it). I had a CT last night but no obvious issues showed up (infection wise). I think their plan is to treat with antibiotics and maybe put a drain in one of the possible infectious sites tomorrow.

It looks like I'll be here through the weekend and possibly into next week although I'm hoping for a Friday discharge if things get moving fast.

Penny has always been and will forever be my rock.

Thanks to all the others who have offered to help with childcare, food, cleaning and emotional support. We appreciate your efforts even if we may not always respond to your offers. I still don't think I'm in any shape for visitors but if/when that changes I'll be sure to let you know.

Updated:
Wow. Penny has been doing a great job at keeping you all informed about whats going on with my surgery. She has been the best advocate a person could ask for. She's not afraid to stroll right downstairs, find a doctor she needs and stop him in his tracks until he gets shit done or at least gives her an answer that satisfies her. She's awesome!

A slight change

Dan was great on the lowered pain dosage. So we've left it there. More waiting on our part. Some good news that the ileo seemed to wake a little today. More fluids out and the big finally... Gas!!! This is what they like to see. Still needing his NG tube though, sucking the fluid and gas out of his stomach. They weighed Dan today. Hilarious, as he's gained weight, can you believe it? I'm sure it's the fluids they are pumping in.

All Dan fantasizes about is drinking from a cold stream. Or jumping in a nice cold lake. He was talking to me a little more tonight which was nice. I have missed him. He was again resting well when I left.

More of the same

It's been a quiet day. Dan is very tired and not talking or doing much. He doesn't even care to listen to his ipod... I thought I'd never see the day! The gut still isn't working. A little more has passed into his ileo bag, though not much relative to the amount that comes out his NG tube.

His pain has been a none issue for at least the last 2 days. Each time they ask him, he answers, "other than the NG tube, about a 2 or 3" (on a scale of 10). The epidural that he has for pain is to help with the abdominal wall. His incision has healed beautifully. Everything really is going great, except for the fact that his gut just ain't working. Now this is expected, when they mess around in there it kind of paralyses those muscles for a while.

I got to thinking today, and a few things have added up to this thought. My mom was wondering why he's still on so much pain meds when he isn't in much pain. Dan's neighbor next door is all constipated due to the morphine he is on, a common side effect (they are putting morphine in through Dan's epidural). And it occurred to me that Dan had a lot of bowel sluggishness before with the anti nausea drugs back in Sept when he did a round of chemo. All this has lead me to think, what we're pumping in is causing this problem!

So the new plan... take the bull by the horns. Dan hasn't needed the nausea medicine all day so that is hopefully cleared out of his system. Also I got his nurse to turn down the pain medication tonight. We'll see how this goes. If the pain goes up too much, we can turn it back up. But maybe, JUST maybe it will help wake up the bowels!

Another IV line was added today too. That's 3 IV's, an epidural line, an NG tube, an ileo bag, a foley catheter, and each leg has inflating compressions on them (attached to a pump) to reduce risk of clots. If you're counting that's NINE things Dan's attached to.

My Valentine is resting very peacefully right now. Let's hope this lasts all night.

Penny.

Freaky Friday

How very fitting. I don't really like being the one to write and update everyone on the blog. Dan is so much better at it, and he usually is very specific in what he wants to say. I'm having to wing this one solo.

First off we just wanted to share a congratulations to Dan's cousin Amy and he new hubby Mike. They were married today/possibly right now, in New Zealand (it's already Valentines Day there).

Dan's suffered his worst day yet (his words to me as I arrived for the late afternoon/evening shift). I spent the night last night, and he mostly slept well, though he's been having trouble getting things to exit the right way. When I left at 8am he was getting nauseous again. He's been very sick, despite NO food or water. I still can't figure out where the stuff is coming from, but as the nurses say, your intestines produce their own secretions... sure seems like a lot.

The Dr's made a few changes today. They added sugar and potassium to his IV, which was good, but unfortunately that has kept him awake all day. The final change today was an NG tube. Dan was really dreading this, and through our conversations with Dr Buie before surgery he was very encouraged thinking he wouldn't need one. Unfortunately everybody is different. How your body reacts to such a traumatic thing is so individual. The NG tube has really helped, as he's not nearly as nauseous. Unless the tube gets bumped, and the gag reflex is triggered.

Dan is a very head strong person as I'm sure you can all see. I know in his mind he thought he would be feeling better by today/Friday. Feeling his worse has deflated him. I wish he could see how incredible he is doing. He never ceases to amaze me, today being no different. It's so difficult in this situation to be rational. How well do any of you think after 5 days without food... I hope you never have to find out. With more and more tubes added he pushes on. He is insistent about getting up and walking to try and get his gut moving and keeping his lungs clear.

From such a positive post from Dan himself on Wednesday to me asking for no visitors I'm sure this raised some questions. I try to imagine what the wondering minds out there are wanting to know and I hope I helped.

You must slide all the way down your slide before you can climb back up.

Penny.

Lunch time

12:30pm. Most of you are in the middle of lunch....
For Dan his consists of a steroid, anti-nausea meds, saline and some Z's

Dan is resting well this morning after a long night. We have someone here with him constantly and that in itself makes him feel better. His body is learning to adjust to the changes and with that come some ups and downs. He's really not feeling like himself and has therefore asked for no visitors for now. We will of course update that as soon as he's up for it.

Thanks for all the warm wishes, thoughts, prayers, emails, comments, phone calls etc. They have all helped.

Penny.

hospital internet!

There is free internet in the hospital! Thanks to Astrid's laptop I can provide more detailed updates now. Right now its 4:25 pm. I just got back to the bed after my first short walk. Because I have a foley catheter and an ileostomy, I really have no need to get out of bed other than to stretch the legs. Its kind of cool actually, I could stay in bed all day if I wanted to. Think of the efficiency at work if everyone had a foley and an ileostomy!

The epidural works AWESOME. I have a little pain but only about 1 or 2 out of 10. As Penny posted below, the surgery went well. They got all the nasty bits out of the colon and the liver metastases were smaller than they expected. All very good news.

Penny stayed with me in the hospital until about 2am to be my gopher. She was fetching juice and water and ice and helping me get comfortable. After Penny went home Penny's mom came out and stayed with me for the rest of the night. My parents took over this morning and have been here all day. Penny even brought Carly in to see her dad and watch a movie. So far things are going well and I hope they will continue along that path.

Thanks to all of you for your support and warm wishes. There have been lots of visitation requests but that might best be left until tomorrow or the next day. I will update the blog with the visitation details when the time is right.

Feeling ok

I had a bit of a rough sleep but am feeling well this morning. I'm going try and get out of bed this morning and go for a walk. I sure am glad to have this surgery done and over with. That's all for now. I may post a little more later.

All is Well

Hi everyone,

Just a really quick note to fill everyone in on the days events. Everything went great! The bad colon bits are gone, and the Dr's were very encouraged with how well Dan had responded to the chemo and radiation. Both his colon and liver had responded! Great news. Dan was in no pain when I saw him other than his right shoulder. Which I've been told is quite common after abdominal surgery. Some connective nerve thing? His has a bag on the right side of his body... and for those of you that have followed along, that means an ileostomy. Which also means they were able to save the lower portion of Dan's colon and he will poop again. Thanks for all the warm wishes and thoughts today. We definitely felt all the energy. I will update soon.

Penny

six am

For those of you who wanted to know, my assigned arrival time at the hospital tomorrow is 6am. At least I don't have to go a whole other morning (or day) without eating.

clear fluids only

My lunch today, originally uploaded by DPC Tutt.

I'm on to clear fluids only now in preparation for tomorrow. Last night we had a 'last supper' here with all the family. 12 adults and 6 kids. We had bbq tenderloin and chicken with beans, asparagas and 2 salads with pavlova (a kiwi delicacy) for dessert. Yum yum. So far my caloric intake for the day is at about 43 and I'm starving.

Why?

It's a question we ask daily of many different situations, good and bad. A cancer diagnosis happens to be one of those situations that falls on the 'bad' end of that scale. While there is much we do know about cancer, there is a lot we do not. My personal experience with cancer to this point has actually not really been focused on the 'why' but more on the 'how do i get through'. But the more I learn about cancer, the more the question of 'why me?' comes to the fore front.

Colon cancer is pretty rare in people my age. Often when cases are found in people so young there is some genetic explanation and/or a significant family history. So as part of my initial consultation with the medical oncologists I was referred to the Cancer Genetics Clinic at the Children's Hospital with the thought that perhaps there might be an 'easy' explanation for all of this.

As part of the initial meeting, the Cancer Genetics Clinic collected detailed information about my family medical history and obtained the biopsy samples of my tumor taken during my colonoscopy. With this information they built a chart which enabled them to a) assess if I have a family history of colon cancer, b) determine if my cancer shows genetic abnormalities suggesting the possibility of a hereditary source. Before I discuss their findings I should give a little background.

In order to say that someone has a family history of colon cancer, one must meet what is called Amsterdam I criteria (there are other criteria too depending on who you ask but Amsterdam I is what they were using at the Cancer Genetics Clinic). The Amsterdam I criteria has 3 elements: (1) there are at least three relatives with histologically verified colorectal cancer (one a first degree relative of the other two), and familial adenomatous polyposis should be excluded (more on FAP below); (2) at least two successive generations should be affected; and (3) one of the relatives colorectal cancers should be diagnosed before age 50. It turns out that I do loosely meet the Amsterdam I criteria.

Colon cancer in people of any age can generally be classified into three causes/sources. (1) 65-85% of all colon cancer cases are sporadic, meaning there is no known family history or genetic cause. These colon cancer cases start with natural mutations of some genes that gets out of control. (2) 15-20% of all colon cancer cases are what they call familial. This means there appears to be a history in the family but no known colon cancer 'suspect genes' are the cause. In some instances there may also be an environmental component (families living in the same part of the world, eating the same food, drinking the same water etc.). These familial colorectal cancers also go by the name of 'familial colorectal syndrome X'. (3) 4-6% of all colon cancer cases are hereditary being caused by a genetic mutation in one of a handful of genes. These genetic mutations result in either HNPCC (hereditary nonpolyposis colorectal cancer) or FAP (familial adnomatous polyposis). Because I do have a family history of colon cancer (I meet the Amsterdam I criteria) and because I do not have multiple polyps in my colon (FAP is characterized by the development of hundreds to thousands of polyps in the colon) the focus of this genetics study was on HNPCC and looking at the genetic mutations that cause it.

HNPCC is known to be associated with mutations in genes involved in the DNA mismatch repair pathway. When cells divide and their genetic information is copied, mistakes are often made. There are a number of special genes whose function during cell division is to repair these mistakes (my genetic counsellor called them "repair man" genes - this is the 'DNA mismatch repair pathway' mentioned above). If the mistakes are not repaired by these 'repair men' in a portion of the genetic code that controls either starting cell division or stopping cell division, then cells can divide faster than usual and without constraint resulting in a malignancy.

The testing process for HNPCC involves 2 screening tests and if those are both positive then a detailed genetic study is done to determine which specific gene is causing the problems. The first test is called an IHC (immunohistochemistry) test. This test involves staining the tumor tissue to make sure all of the 'repair man' genes are present. My IHC test came back positive meaning that all my repairmen genes are present. The second test is called an MSI (microsatellite instability) test. This test looks at all the repairmen to make sure they are working properly. My MSI test came back normal meaning that all my repairmen are working properly and aren't standing around leaning on a shovel having a smoke. The bottom line, in plain English, is that all my genetic "stuff" seems to be present and in good working order. This means that my particular case of colon cancer does not fall into the 4-6% of colon cancers that are strictly hereditary ( like HNPCC). This is exceptionally good news since HNPCC carriers can pass those genetic defects to their children (carriers of HNPCC have up to an 80% lifetime risk of cancer).

My case has been lumped into the 15-20% of colorectal cancers that are labeled "familial colorectal syndrome X". Relatives in such families have a lower incidence of colorectal cancer than those families with HNPCC syndrome and incidence may not be increased for other cancers. Sounds like good news, but it still doesn't answer the "why?' does it. Hmmm.

For more reading you can check out:

Lower Cancer Incidence in Amsterdam I Criteria Families Without Mismatch Repair Deficiency. JAMA. 2005;293 pp1979-1985.

Ok, I just re-read that whole thing. If you made it to the end then good for you. You deserve a gold star.

One week to go!

In the 5 months (yes its been that long!) since my diagnosis I've done a lot of reading and research both on cancer in general and colon cancer specifically. But now that I'm so close to having my surgery my thoughts have shifted to the logistics surrounding the surgery itself and the recovery. I'm very confident in the ability of my surgeon (Dr Buie) and feel very confident about the surgery in general. The big unknown for me though is the recovery. Being that this partial colon resection is major abdominal surgery, I'm scared of going from feeling great (like I do now) to feeling like crap (like I will in a week). The recovery will take about a week in hospital and will be a month at home and likely two months before I'm back to my (new) normal self lifting kids, working a bit, going for extended walks etc. I will likely need to forsake solid food for a week starting the day before surgery and can expect to loose 5-10% of my weight over that week. And of course post-surgery I will have either a temporary ileostomy or a permanent colostomy. The prospect of pooping into a bag has seemed to this point like a minor inconvenience when I've thought about it in the past. But as reality has set in in these past days I decided I needed to find out more about exactly what having an ostomy will be like.

Puttering around on the web I found a site called the Calgary Ostomy Society which amongst other things provides experienced ostomy mentors to new ostomates. I sent them an email explaining my situation and asked if they had anyone I could meet with this week to discuss my upcoming life with an ostomy. An hour later I got a phone call and the next day I met up with a interesting guy named Sheldon for coffee. He has lived with a permanent ileostomy for 25 years and was a wealth of information on the ins and outs of ostomy life. He told me all about surgery and recovery and he divulged some of the tricks of the trade for daily life with an ostomy. He has virtually no limitations on what he can do. Ostomates can eat normal food, play sports, swim, drink beer, water ski and do just about everything a normal person can do usually without anyone else knowing they have an ostomy! Ostomies don't emit a smell whatsoever (gas can be expelled wherever and whenever the ostomate is ready) and can be hidden at or below the belt line inconspicuously even when you're wearing only swim shorts. Sheldon has close friends that have no idea he has an ostomy.

In short, meeting with Sheldon has put my mind at ease. I can see myself living comfortably with an ostomy, either for the short term or the long term. While I am aware that it won't be easy or straight forward, I take great comfort in knowing that it has been done before and if others can do it then so can I.

Things are looking up

watching the fan, originally uploaded by DPC Tutt.

Ten days to go until surgery. It seems so close but so far away. I had a three hour meeting at the pre-admission clinic on Friday to discuss some particulars of my surgery. First I met with a nurse to discuss all the logistics of my surgery and hospital stay. Here are the coles notes of what she said: Since my surgery is on the 10th, they want me not to eat or drink anything other than clear fluids after midnight on the 8th. I also have to do a Colite bowl cleanse (yes, its as fun as it sounds) on the 9th. On the day of my surgery I will go in to the hospital, check in at the admitting desk and then head to the 4th floor surgery waiting room. At that point I meet with the doctor and anaesthetist to discuss any last minute questions I might have. Then the anaethetist will start my epidural (for pain management after surgery) and put me under for the surgery. After I wake up I will be in recovery for a little while and then move to either unit 102 (general surgery and surgical oncology) or if that unit is full I will be in unit 71 (trauma surgery). My hospital stay is expected to be about 7 days and I should be back to eating some solid food by the time I head home.

After talking to the Nurse I met with the anaesthetist to discuss the details of my anaesthesia and pain management. We discussed the logistics of anaesthesia and the risks. He said that one option I have for pain management in the days after the procedure is an epidural (just like when you get a C-section to deliver a baby). One of the best things about an epidural is that it manages the pain so effectively that you can be up and out of bed as soon as 8 hours after surgery! This helps reduce the risk of blood clots in the legs an fluid pooling in the lungs and generally makes for a quicker, less painful recovery. I told him I was totally on boad with the epidural.

The final person I met with was the internal medicine doctor. She was working her last shift at the Foothills hospital before moving to Vancouver for more training. She had been up until 3 am the night before (I saw her at 8am the next morning!) packing and trying to convince her 4 year old that they weren't going to forget her teddy bear when they moved. We discussed my medical history and she was mildly concerned about my heart condition. She paged my cardiologist who came over to discuss things in person (thanks Dr Gillis!). In the end I was prescribed some beta blockers that may or may not help with the issue.

After 3 hours of waiting and Doctor consultations I was declared fit for surgery and told to call on the 9th to find out what time I needed to show up on the 10th for surgery. All systems go!