Tuesday, February 8, 2011

This Blog has Moved

I've had many comments from people suggesting we use CaringBridge instead of keeping this blog.  I thought about it in the first days, but opted to use this blog because it doesn't have some of the limitations that CaringBridge would have (like limits on photos, etc), and I figured people knew how to "follow" a blog.  But, I was wrong.  I've had more than one person tell me that they'd prefer to easily be able to sign up for email notifications - that they're more likely to read and stay informed if they have that.

So, although it's possible to do that with a blog...the great folks at CaringBridge have made that much easier and the most important thing to us is that you all are able to easily stay informed on our journey so that you can be there in spirit with us.

So, we won't be posting on this blog anymore, but instead you can find us at http://www.caringbridge.org/visit/chrisandjulia.  You can sign up for email alerts and drop comments to us there.

We thank you all for your love and support!
Julia (and Chris)

Sunday, January 30, 2011

Newpaper Article - a MUST read!!

The newspaper in my hometown - where Kelsey goes to college - did a nice article on Kelsey and her role in saving Chris's life.  Check it out here.

Thursday, January 27, 2011

Good News For Me - or - Bad News For My Shirt

Today I got to visit my oncologist and find out the results of the CT scan done yesterday. Both Julia and I were more than a bit apprehensive because I'd only had two chemo treatments before the cardiac arrest and a one month break from chemo to allow the whole cardiac system to prove it was in good condition again. If I;d have seeen no growth in the tumors I would have been happy and ready to proceed with a full regimen on the new chemo drugs.

Well, the news came back better than we or the doctor expected. The tumor that caused the thickening of the colon wall had almost completely receded and the other colon sites had gotten smaller. The tumors in the liver all look to have gotten smaller; the largest two of which went from a bit over 2.1 inches (5.5 cm) to 1.8 inches (4.7 cm) and 3.8 cm to 3.3 cm. Some of the nine or so tumors in the liver are close to blood vessels in the liver, so they are not good candidates for radiation or surgery, so this is a very good development.

On the negative side, because of the cardiac arrest, I can't use the drugs that gave me those wonderful results. We are hoping the new drugs I just took (5 hours of intravenous chemo - fun, fun) will give similar results. If it does not, we will look at getting cardiology involved in the treatment and finding medicine that may allow me to restart the old drugs. My thought is that at least we have something that we know works very well. It may take some doing to use it again if it is necessary, but it's nice to know something works.

After the chemo treatment today, which ended about one and a half hours ago, I'm feeling a bit light headed, a bit like nausea is coming on (I just took a pill for that) and a bit tired. All expected side effects. The nasty rash and hair loss can be expected around day seven. It's nice to have something to look forward to! Oh boy...

When I got home and stood after getting out of the car, I felt cold wetness on my chest around my port. I thought "Oh, damn...", knowing I'd been bleeding from the spot where the needle had been. A quick call to the clinic assured me it could not be from the port itself, which is connected to a main vein going to the heart, so a bit of pressure was all it took to stop the bleeding. My shirt, one that is old and has a small hole in it, was not so lucky. It had to be put down and tossed into the garbage. I'm including in this blog entry the last picture of me in the shirt. The coat, fortunately, can be washed.

Take care and as always, thanks for your kind thoughts and support.

Sunday, January 23, 2011

Pressing Forward - or - What Next?

This week is like a restart, a do-over, new beginning. I'm having a scan again on Wednesday the 26th. On the morning of the 27th we will find out if the cancer has progressed after my two previous chemo treatments and a month with no treatments. This will give us all our first look at how fast this cancer is progressing. After the consult I'll have my first chemo with the new cocktail of drugs that afternoon.

That change in drugs brings a change in side effects. On the positive side, I will no longer have a sensitivity to cold. With the current temperature of 5 degrees, that is a very good change! I also probably won't have heart problems, but I think one of the medicines does have a slight risk some heart related problems. I will also lose my hair, but that doesn't bother me. I did shave my head for years, after all. On the negative side, I have a very good chance of getting a rash that can, in some people, be painful / bothersome. I also will probably experience more nausea than with the previous treatment. I'm not thrilled about that either. We'll see how I react to these drugs.

It has been a busy week here though. This weekend I had a Jr. High school lock-in at church that went quite well. Earlier this week I started teaching a Stats class at Cardinal Stritch University. The next class will be Tuesday night. I expect to be recovered and rested by then. And we started working on the old rental house - one room painted, lots to go! Things are going to stay busy with the old house, possible sale and moving from this house, and teaching on Tuesday nights for the next five weeks. That, and I am still looking for a job. Busy, busy.

Thanks again for all the positive thoughts and encouraging words. It has been very comforting and encouraging.

Friday, January 14, 2011

Stress Testing - or - The Cardiac Loose Ends

It has been a while since I posted, mostly because there isn't much news, even though there has been activity. Yesterday I went in and had a cardiac stress test, something I had always wanted to do since seeing people on TV hooked up to machines monitoring everything, breathing through a tube, and running on a treadmill. That should show you if anything is wrong with your heart! In my case, this is part of the post cardiac arrest clean-up; making sure I'm ok from a cardiologist's perspective. The two nurse / technitions administering the test said I did very well, much better than they expected from a cancer patient who just had a coronary. For me, it validates the "I'm feeling just fine" that I've been telling everyone.

I have been exercising at Mayo's cardiac rehab center. It is tightly monitored, all cardio for me for now, and not very fun or engaging. I'd prefer the Healthy Living Center gym much more. But I go to the cardiac rehab center and do 20 minutes or so on a bike. I am, I believe, the only recovering cardiac patient with virtually no heart disease, the only one close to an ideal weight, and probably one of the youngest people there. An interesting place that I won't miss much at all.

I go in and see the cardiologist on Feb 1st. I'm hoping I'll get a green light to proceed with anything else I want to do in terms of exercise and activity. We shall see.

I have a scan on the 26th, and my next chemo appointment on the 27th. I am bit apprehensive about both the side effects of the new cocktail of drugs and the length of time between chemo treatments and what that means for tumor growth. The latter we shall see with the scan, the former with the few days after the 27th.

Still, it is all pretty good. I'm enjoying my free time as much as I can. I finished grading one classes finals and am getting ready to teach a second class at Cardinal Stritch University, this one a Stats 1 class (the last was Finite Math - a prep for Stats 1). And I'm going up to the cities to play in a chess league match and hang around at coffee houses where the baristas and most customers have unnatural hair color, multiple body piercings, and really cool tattoos. My idea of a nice afternoon!



You have a good time as well,
Chris (and Julia)

Wednesday, January 12, 2011

Just checking in...

Many of you have said you're following the blog (thank you) and were wondering what's up since the last post.  We didn't really have much to report, but yesterday we finally learned when Chris will start chemo back up again.  January 27th is the day.

Here's what we know right now.  He'll have another scan the day before he starts chemo again.  We'll review the results of that with the oncology people on the 27th before the chemo appointment.  Hopefully we'll see little to no progression in the cancer with this "chemo holiday" and if we're really lucky we'll maybe see some shrinkage (which is what I'm focusing my energy on as an outcome). It would be great if that cardiac arrest were worth it in some small way!  :)

The next round of chemo will be CPT-11 and Erbitux. With this combo Chris will probably start looking more like a chemo patient than the handsome man we all know and love.  Sadly, he'll probably feel more like one too. 

He's going to lose his hair which is no big deal, but I'm worried about my drains.  I mean, really, has anyone looked at my thinning hair lately?  I don't know how much more hair my drains can take!  Better get more draino!  :) 

He will also get an acne-like rash that can sometimes be painful and pustule-like. YUK! Sounds like he'll look like he's in full-blown puberty!! He will also likely experience fatigue and even malaise...sounding more like a teenager all the time!  haha!  I always wondered what he was like during those turbulent teen years... Sorry, Chris, but you know I love to have fun at your expense :)  

Oh and don't forget about the standard nausea, diarrhea, constipation, and myriad of other wonderful side effects. But that's the price we pay to get him back to cancer-free, and in the grand scheme of things, I think it's a small price to pay.

In the mean-time, I'm enjoying the fact that he's feeling good right now because he's not doing chemo.  Since we have no control over that...it makes sense to enjoy it while we can, right?  I'm learning to just take one day at a time and not think too far down the "what-if" road.  None of that matters as much as today matters.  So, today, I'm happy that he's feeling good.

Thank you all for your continued care, concern, and support.  We are very fortunate to have so many friends, the outpouring of love from you all has overwhelmed us.

Julia (and Chris)

Wednesday, January 5, 2011

Cardiac Aftermath -or- Chemo Part Deux

Julia and I went to see the oncologist today. I learned that in all the years Mindy, the oncology nurse for Dr. Banck, has been doing this, I was the first sudden cardiac arrest. Not a great distinction, but unique. The drug that caused it all, 5 FU (also known as Fluorouracil) is no longer going to be part of my treatment. If the odds of a cardiac event were pretty much independent, like the odds of winning the lottery, I'd be happy to stay on the drug cocktail. The only real side effect (aside from the heart attack) was fatigue for a day or so. Not too bad. And it is the most effective treatment. But alas, I would have a high chance of another cardiac event of some type.


5 FU drug.

So, the new chemo will start in three weeks, after the heart medicine has left my system and I'll be ready to stress my body again. The two concerns I have are how much the cancer might grow with a month off from chemo (Probably not so much. It had been around quite a while before it was detected, and I did get two treatments in before all hell broke loose.), and how much less effective this second or third line of chemo drugs are compared to the first choice. We shall see.

I will have different side effects. They include a potentially painful rash about the face and upper torso, nausea, and general weakness. Hair loss will happen as well with the new regimen of drugs, but I really do not care that much about that one. I will lose the sensitivity to cold. That will be NICE up here.

So, the new chemo starts on roughly Jan 28th to Feb 4th. We do that for two months (every other week) then rescan to tell how effective the treatment is. I'll of course post results and thoughts.

I see the folks at cardiac rehab tomorrow for an evaluation and exercise. I expect the exercise they will allow me to do would be much less strenuous than the exercises I am used to doing. While I've lost about 30 pounds, I think maybe as much as half is muscle mass. I don't know if I could do sets of 225 at the bench press anymore. As they give me permission, I will continue to work out and stay as strong as I can. I can't help but believe that aids in both recovery and beating cancer.

Take care and thanks for the good wishes. It has been very appreciated.

Chris (and Julia)

Saturday, January 1, 2011

Good riddins 2010 - hello 2011!

Ok, sorry...i know it's been since Tuesday - it's been a busy week!!!  Chris came home on Thursday a little battered and bruised, but otherwise in pretty good shape.  He gave me permission to post this picture.

If you look closely, you'll see bruises in his right arm, that's where he tore some IV's out while in the ER.  He was basically unconscious and it was his drive to survive that made him a bit combative.  You can also see the burn marks on his chest where the Automatic Defibrillator shocked him several times. And the bruises in his belly are from shots of heparin.

Once they got him up into the ICU they had to shock him again.  This time they had him hooked to the machine that recorded the event.  I snapped a picture of it...just in case he wasn't going to believe me later on about what happened to him :)

And this is a picture of the ICU room in the cardiac care unit where he was for the first two days.  He doesn't remember this room at all, but I will never forget it and all the amazing nurses and doctors and other staff that work there.  Those people are incredible!


His memory is MUCH better now. I think he's probably almost all better in that respect too, for which I'm incredibly grateful.  It was very unnerving to go through a whole day with him only to have him not remember ANY of it the next day - and that happened 3 days! 

I've always tried to look for the bright side and lessons learned in any event. So, for me the bright side in this event was that for 4 days I didn't even think about cancer.  It was a nice break!  My lesson learned, one that I think this whole medical odyssey is teaching me, is to live more in the present.  Appreciate and enjoy all the blessings in my life that are with me today and not worry so much about what the future brings.
 
So, as we begin a new year I look forward with optimism, but am resolved to live for today and appreciate all the wonderful people in our lives.  Yes, that's YOU!  Thank you for all your love and support.

Julia (and Chris)