Surgery Scheduled

I finally have a date for my surgery. I go to Mercy Hospital at 7am on Tuesday Dec 1st to have a little more than 2/3 of my colon removed.

Until then I'm off chemo and radiation.

I ended up only completing 23 out of my 25 radiation treatments. At first the side-effects we nothing and I felt great, but after almost three weeks my body started to react harshly to the radiation.

Now, though,I feel great and am going to do my best to enjoy the next month and change I have to live a "normal" life without chemo and without radiation.

It feels good to feel good.

Update

It's been a while since I've posted.

For about the past month I've been doing a new chemo (Xeloda, in pill form) and radiation. The current plan is to continue this regiment until Oct 8th at which point I will take about a month off for my body build up its strength in preparation for surgery some time in November.

So far the radiation hasn't given me too much trouble other than some mild diarrhea and a little irritation. The main problem I'm having now is the tingling in my hands and feet. It's quite irritating and seems to be getting progressively worse.

I'm also experience trouble balancing. I can't stand for more than a few seconds with my eyes closed before I start to fall over. It's very very odd.

Otherwise I'm handling this new regiment quite well. It's a hell of a lot better than the previous chemo I was on. I just hope it's working as well.

Stage I?

Yesterday I went to Mercy in Baltimore for another endoscopic ultrasound. I learned my lesson from the first one being awake, this time I was knocked out and slept through the entire procedure. The only adverse reaction was having to take a massive dump after the procedure. Other than that it was nothing.

I spoke to the doctor who did the ultrasound and he said things looked very good. He said that the tumor near my rectum seemed quite small, was no longer outside of the colon wall and that there didn't seem to be any lymph nodes involved. I asked the doctor what stage he thought this would put me at and he said "Stage I"!

Of course, he qualified it by saying "I might be wrong." But assuming he's not, Stage I is awesome!

My original staging was Stage 4.

Basically, I've gone from an 8% chance of living five years to greater than a 95% chance.

Even though it still sounds weird to put the next five years of your life in those terms, it still feels great to know I'm getting better.

Stage II!

I had a colonoscopy a week ago today. Before the colonoscopy I was technically a Stage IV patient of colon cancer. This was because they had considered the two tumors in my colon a mastestation of one another. However, I found out today from the biopsies taken during my colonoscopy that the tumor near my ileum is benign!

My oncologist also mentioned that there didn't seem to be any lymph node involvement, which if that is the case (my PET scan on Friday will hopefully confirm this) then I my restaging could put me at Stage II!

This was excellent news.

My oncologist told me "you're ready for surgery" so I'm off chemo until after my surgery. Hopefully I'll have another 2-3 weeks before surgery to enjoy the time off chemo. Regardless, I'm happy to have any time off chemo.

Since I'm off chemo and my counts are fine, I'm thinking of getting tattooed today.

No, I've already decided that I am. :)

Round #7

I went in yesterday and met with my oncologist. He said things were going well and that I was definitely responding to the chemo. This, of course, is good news.

It was a pretty uneventful round of chemo. My counts were a little low so they only gave me 75% of my normal dosage. Oddly enough, I -can- tell the difference. I don't feel as toxic as I have in the past.

Also, some of my normal side-effects aren't as prevalent as they usually are after chemo. The tingling in my fingers and toes isn't that bad, the metal taste in my mouth is only minor and I don't feel as fatigued.

I have one more round of chemo before my second colonscopy on August 3rd. I'm hoping that brings me some more good news.

I have to admit, since my diagnosis the majority of the news about how I'm responding and doing has been good. I hope it keeps up and I can be rid of this illness in a few more months.

CEA Counts

Before I left for the office this morning I received a call from my oncologist's office. The nurse wanted to tell me the results of my latest CEA count.

CEA counts are used to measure the progress of colon cancer patients especially. Normal for people without cancer is a count of 0-3. With cancer patients it can be as high as 100 or worse. My last count was 14.

But this morning when they called me, they told me that my count was at 2! Which is within the range of a person without cancer!

Of course, this doesn't mean I'm cured, but it's just another reassurance that the chemo is working.

Round #6

I met with my oncologist today. He informed me that he spoke with the surgeon that I want to do my surgery and they both agreed that the best course of action was removing the entire colon. They figure that there is something in me that caused the dual primary tumors and that leaving any of the colon is essentially playing with fire.

This is a little contradictory to what the surgeon originally told me, as she seemed to originally recommend only partial removal of the colon with annual colonoscopies. Not the story seems to have changed.

My options basically are:

1) an ilestomy bag
2) a continent ileostomy
3) partial removal of the colon

Option #3 is dangerous because it increases the recurrence of more caner. Option #1 sounds just awful ad Option #2 doesn't sound much better than #1.

I think the decision is up to me. All the options suck and I don't know what to do.

Round #5

After my awesome week off, I went back for treatment yesterday. Since I had the extra week between treatments most of my side-effects had faded and so far this chemo hasn't been too bad.

I have the 5FU pump with me 'til tomorrow morning. Normally I will sleep as much as possible when I have the pump, but I think that's partially to be blamed for the anti-nausea medicine. So far I haven't taken any today even though I had a hardy lunch.

Still no word on the date of my surgery. I'm keeping my fingers crossed that since I'm responding so well to chemo that maybe, just maybe, I won't even need surgery. It's a long shot and probably wishful thinking, but you never know.

Week Off

I went to the cancer center yesterday, the same one I always go to for treatment and was prepared to spend the next three days sleeping.

They accessed my port, as always and ran a CBC. Turns out that my neutrophil count was so low (~.5) that they decided to delay my treatment for a week. After all the begging I did of my oncologist, I ended up getting the week off treatment anyway!

I'm quite happy about this, though it's unfortunate that my counts are so low. I just need to be careful to stay away from germy people and things. But I feel great and I'm glad I have a few extra days to get the still remaining toxicity out of my system.

It'll be a good week, I hope.

ER

I went to the ER on Friday night with "severe abdominal pain". It was not my choice to go to the ER, but when I called my oncologist he instructed me that they needed to do a scan to make sure I wasn't having a blockage.

What I thought would be a few hours ended up taking up most of my weekend. I was just released from the hospital this morning. Luckily it was none too serious. The pain in my abdomen went away on its own after a couple of bowel movements.

Also, the CT scan I received confirmed that I am responding to the chemo. Both my tumors have shrank, which is excellent news.

I had never spent the night in the hospital so it was a bit unsettling. Luckily it wasn't too horrible. Though when my doctor told me he would release this morning, I was ecstatic.

It's good to be home.

Round #4

I started round #4 this morning with a digital rectal exam from the oncologist. He's a busy man and didn't even remember examining me the first time, which makes me wonder. But he reviewed his notes, stuck his finger inside me and said that the rectal tumor had definitely shrunk.

This was very good news and says that the chemo is working. I had suspected this all along as I was seeing improvements in my bowels and in other areas. I was happy but not completely ecstatic. I'm not sure why. Perhaps it's a cautious optimism.

I asked him about inserting a week between this treatment and the next one, but he said if it was just a matter of toxicity that he'd rather not. Of course, it's my body and my treatment and I have the right to do what I want -- but I'll stick with his advice for now.

It's Tuesday afternoon and I've been sleeping a lot. I have the pump with me and I just prefer to sleep when it's with me. Then I don't have to deal with it as much.

Time to go lay in my bed for another couple hours.

My Portacath

I spent 2008 losing a lot of weight which I'm kinda now regretting because the portacath stands out a lot.

The portacath was "installed" in April and has actually been very useful. When I go in for chemo, it saves the trouble of having to use a vein for the IV.

For family and friends I haven't seen in a while, you can see part of the tattoo on my right arm that is still incomplete. Unfortunately, I won't be getting tattoed again until I've recovered from my cancer.

Here's a couple pics of the other tattos I recently got. The one on my right arm and on my left side are still incomplete. This has nothing to do with my cancer, I just want to show 'em. :)

Recovering from #3

The last round of chemo was a little rough. It wasn't as bad as round #2 mainly because I had no fever or flu like symptoms this time around. That's a good thing (thanks Martha).

If anything it seems that this time around was a little 'easier' than the previous two rounds. Not that any of this is easy. But there was very little nausea, so little that I only took my anti-nausea medication four times (maybe five?).

The main thing this time around was fatigue. Monday, Tuesday and Wednesday I slept more than I was awake. By Thursday, yesterday, I was ok but still tired. I managed to go to work for a few hours and came home and napped for a few more.

Today I can still feel the chemicals in me and I can still feel a little fatigue but for the most part it's manageable and I'm able to ignore it.

On the bright side I'm fairly certain the chemo is working. Things are thicker then they have been in a long time and they pass a lot easier as well. There's no blood anymore, which is a drastic change, as I was seeing blood just about every time I went to the bathroom. Also, for about a year and change I had a slight pain in my stomach near my cecum (which I eventually found out was another tumor (I have two in my colon)) which I haven't felt for about two weeks or more.

My next round of chemo is the Tuesday after Memorial Day. This will include a digital exam (ie. the doc will be sticking a finger up me) which the doctor will hopefully be able to determine if the tumor near my rectum has shrank.

I've realized so far through this that I don't like a lot of the terminology that the "cancer society" (people with cancer) have adopted. For example, I don't see this as a "battle against cancer" and I hate hate hate it when people die from cancer and it's referred to as "so-and-so lost their battle against cancer".

This almost seems to personify cancer, as though it's a sentient thing actively attacking you. In actuality it's just a malfunction of the body. A horrible and terrible malfunction, but one nonetheless. I'm not battling anything. I'm getting treated to fix something in my body that has gone wrong. It's not a battle, it's not a fight, it's an illness. And it's curable.

Update

Some people have asked me what chemo feels like and honestly it feels like nothing when it's going in. I go to the cancer center and I sit in a big room full of other people whose lives have been affected with cancer. Often I'm the youngest one in the room.

I have an attending nurse who does everything for me for that day. Usually this begins by 'accessing' my port which just means sticking a big needle into the port. This doesn't hurt because ahead of time I apply a numbing solution to the area. This needle is attached a little plastic thingy which sits in my port and has a tube running out of it. This way they can do everything through the tube instead of having to poke me constantly.

First they withdraw blood from me to do a CBC (complete blood count) to make sure my white blood cell and red blood cell counts are OK. Then they hook me up to an IV. First they give me an anti-nausea solution which takes about half-an-hour to drop into me. After that is when I get two of three drugs in the FOLFOX regime. This takes about an hour and half to drip into me and usually by the end of it I still feel fine.

After that is done they hook me up to a pump which I wear around my waist for the next two days. This is probably the hardest part of the chemo as it's a constant reminder of my illness. The pump is about the size of a tourist's fanny pack and is actually contained in a fanny pack.

During the weeks I have chemo, Monday (the day I go in), Tuesday and Wednesday are the hardest. Wednesday mornings I get the pump removed and by Thursday I'm usually starting to feel a little bit better. By Saturday I'm usually back to 'normal'.

Tomorrow I go in for my third round of treatment. I'm hoping it goes as smoothly as the second round did, but without the fever.

Feeling Good

My first chemo wasn't too bad. If anything it was more psychologically draining than physically. Though, all I wanted to do Monday, Tuesday, Wednesday and Thursday was sleep.

I had to wear a little fanny pack for three days (Mon - Wed) that was pumping 5FU into me for 46 hours straight. That was a little annoying and made me feel awkward and self-conscious. I essentially stayed inside for three days and did a lot of sleeping. The nausea wasn't too bad until Wednesday once the fanny pack was removed. I continued taking my Compazine (anti-nausea medicine) through Thursday but tried to use it sparingly since it makes me so tired.

By Friday I was feeling much better and today I'm feeling almost back to normal. I still have the tiniest bit of an unsettling feeling in my stomach but other than that I'm feeling fine. I was able to get out and run yesterday and today -- I miss running. Earlier today I was able to eat a meal until I felt full as opposed to the past few days where I was only able to eat until I felt sick.

Of course, chemo treatments supposedly get more difficult the further you get into it. I'm feeling good though and optimistic. I have 9 days until I have to go back (yes, I'm counting) and I'm going to try to enjoy those the most I can.

Love each day.

It's official

I start chemo on Monday.

I will be going in every other Monday for chemo (I'll be wearing a pump for three days, so I'll be going back on Wednesdays too, but only to have the pump removed) .

They want to do three cycles of chemo (six weeks) and then start me on chemo/radiation as long as I'm responding well. There was no mention how long the chemo/radiation would last, but I'm assuming another 3-6 cycles after. I think I'm still looking at surgery some time in June or July. Then some more chemo afterward and then hopefully all clear.

I'm nervous about Monday but I'm sure most of it is just the fear of the unknown. I'm also happy that treatment is about to get started and I'll soon be on my way to being cancer free. Even if I have to sacrifice my colon.

Proctocolectomy

I had my second appointment with my oncologist yesterday who scheduled me to start chemo on Monday.

But then today I had my second opinion with a surgeon at University of Maryland and he suggested removing my entire colon. He's worried that because of my age if the colon is not removed I have a very high chance of recurrence. So confident that he definitively said I would get cancer again.

This operation would not require me to have a bag, which is good. My small intestines would be hooked up directly to my rectum. The downside is that I'd have diarrhea like stools for the rest of my life and probably have to use the bathroom 5-8 times a day. He was adamant that the colon come out. The next step, from his opinion, is for me to have an endoscopic ultrasound (I'm learning so much!) which will determine the depth of my rectal tumor.

Basically, this test will determine my course of treatment. Chemo/radiation then surgery then more chemo/radiation? Or surgery then chemo/radiation? I meet with him again next Tuesday to discuss the results to the endoscopic ultrasound which I'm having tomorrow.

Acceptance

It's been a few weeks since I've written and a lot has happened.

I met my oncologist and soon went in for a PET scan which showed no signs that anything had spread. All my organs look good and show no sign of metastases, which is good news. Of course better news would be "you don' t have cancer" but I'll have to wait a few months to hear that.

On Thursday I went in to get my portacath installed. It hurt a lot Thursday, requiring me to take three oxycodone in total (oxycodon + ambien = oh my). Today, Sunday, it's feeling fine and I barely notice it. If I turn my head certain ways I can feel the stiches but I suspect in a few more days when it's completely healed I'll forget it's there.

Monday I have a second appointment with my oncologist, which is when I'm guessing my chemo will be scheduled.

I'll be relieved once the chemo starts. I wouldn't say I'm looking forward to it but just that I'm looking forward to getting this all behind me. Someone wrote me an email reminding me that this is just a "6 month bump in the road". Six months isn't so bad.

Introduction

Last week on St Patrick's Day I was diagnosed with rectal cancer. I have not been told what stage it's in, but one doctor guessed Stage III. From my laymen knowledge on cancer and what the Internet tells me (thank you oh wise Internet), I'd guess I'm at Stage IIIa or Stage IIIb.

The tumor in my rectum was so large it prevented the colonoscope from safely passing by during my first colonoscopy. The doctor was able to get an endoscope into my colon and go about as far as the proxima colon which looked normal.

The tumor is located roughly from 10cm to 14cm inside my rectum. The CT scan suggests that it has not metastasized, though there are two lymph nodes that seem to be inflamed. Perhaps also cancerous. The CT scan found another mass in my colon near the ilececal valve, which doesn't look like it's physically too far from the rectal tumor.

Saturday morning I have a PET scan which should shed some more light on the mass near the ileocecal valve. I'm also hoping this will help reconfirm that the cancer hasn't metastistized.

It's been a week and a day since I found out and in that time I have met the gastrointerologist who was cordial and nice. I met the surgeon on Monday who is a young crunchy surgeon and obviously brilliant but detached. Tomorrow I meet my oncologist.

The big day is next week, April 2nd @ 3pm when I go in for surgery. From what I've read, the average hospital stay is 5-7 days, but I'm hoping since I'm relatively young and otherwise healthy that maybe I can come home a few days sooner. I also hope I can be back to work after two weeks or so.

Other than the personal relationships in my life, work has really helped me keep focus and get my mind off my cancer. I've been working a lot more since my dx.

I'm thankful.

I will use this blog from time to time to talk about my surgery, my chemo and radiation and my recovery. I'll also use it as a place for family, friends and people from work to check in on me and see how and where I'm at in my recovery.

Anyone who knows me knows that I'm not a spiritual person, I'm an atheist. Oddly, I have always believed in the power of prayer. Attitude and support is a large part of your recovery and knowing that there are people praying for makes me feel good. I may not believe in God, but I do believe in the power of support, kindness and love. To all my religious friends, please pray for me.

Everyone else can just piss off!

Or buy me a beer.