Life after Chemo

Hi everyone

It has been a long time since I posted to this blog so I thought it was time for a post chemo update.

It has been just over a year since they found the cancer had spread to my liver and removed it. Chemo followed that and chemo was done on March 5th of this year.

Since then I have been  to see the oncologist a couple of times for blood work (everything is fine) and I have had one CT Scan which also was fine. So I have been in remission over a year now and all we can do is hope and pray that it won’t come back again. But since I made it over 4 years in remission last time, I won’t feel like I am out of the woods until I beat that. Every trip to get scanned is an incredibly anxious experience. The way it works is you get scanned and then  you have a follow up with the oncologist in a day or two to review the results. If it has come back that is how and when you get the news. I dread these scans but at the same time I look forward to them because a clean scan is such a huge relief. You can imagine the stress that his has on Carol and me I’m sure!

The plan is to get scanned every 3 months for a year and then every 6 months for a year and then every year forever. I also get blood work every couple of months and I also have to keep up with the colonoscopies every few years.  All in all I am pretty carefully watched and the good news is that they would catch anything very early which gives you the greatest chance of survival of course.

Unlike the first round of chemo I have not had any serious side effects this time. My neuropathy is the same and I will be on pain killers forever. Dealing with them is another whole story but I have been on them for 6 years now and I think I am pretty much used to them and what they do to you. Everything you take has some effect on your body including what you eat and drink, what medicines  you take and what treatments they prescribe for you. Nothing is “free” because everything does something and you have to manage that as best you can.

The only weird side effect that happened this time besides my hair falling out on my legs and arm pits is that I have a small rash on my face that comes and goes for no apparent reason. It is only about the size of a quarter and it is the result of the 1 single does of Erbitux that I took. I stopped taking it after the first session because I got so sick and it left what I believe is a permanent rash! I can’t imagine what 6 months of it would have done but the rash is a known side effect of Erbitux in some people. I will not take that stuff again!

All in all Carol and I feel like we have dodged another bullet but we also know that we have to deal with the possibility of a recurrence. That is very tough on us and we have our days where it doesn’t go so well and other days where it just isn’t on our minds. I think the biggest “side effect” of cancer has been the mental stress of dealing with the possibility of the cancer coming back. It is a tough thing but we are trying our best to deal with it and we continue to fight the psychological battle every day.

We know we have lots of people (like you) who think about us and pray for us and that is unbelievably reassuring. Thank you for being there and thank you for your thoughts and prayers. Please know that they are appreciated.

Peace and love to you all!

John and Carol

Post chemo update#2

Hi everyone

Sorry for not updating this sooner but we have been on vacation and our new addition (Joey the Wonder Dog) takes up a lot of time too. Carol and I just got back from a week at Sanibel Island and it was everything we hoped it would be! We had a condo right on the beach and we spent the week looking for shells, looking at birds, fishes, alligators, manatees, osprey, dolphins and all kinds of other wildlife!! As you can see from the attached pictures we also found time to relax and enjoy some down time J (Remember you can click on the pictures to make them bigger for easier viewing)

 

On the health front everything is doing very well. I feel great and all the side effects from the chemo are gone!!! My mouth sores were the last to go and they went away a couple of weeks ago. Getting my stamina and energy level back to normal is still coming along but I started back to work full time this week and so far so good. I don't have one single thing to complain about which is a new scenario for me. I now need to start focusing on all the good things in my life and leave all the negative stuff behind me. When you go through something like chemotherapy for such a long time you tend to focus on all the things that are going wrong and all the side effects that are wearing you out. And that’s ok, but at some point you have to move on and I am making a big effort to do that. Not having anything to complain about is helping out also

 

On a slightly humorous note I did find one new side effect that I hadn’t even noticed before. During the chemo I was always cold so I wore sweats and sweat shirts just about the entire time. I didn’t go outside very much either so I never got dressed up or paid much attention to how I looked except to watch for any hair falling out. Well while I was focusing on the fact that my hair was thinning out on my head, I totally missed the fact that most of the hair on my legs fell off during chemo. When I went to Sanibel last week I wore shorts for the first time in at least 7 months and I noticed that my knees looked and felt strange. As I looked more closely I realized that about 90% of the hair on my legs was gone and I was pretty much hairless there. The other thing I noticed was that almost ALL the hair in my armpits was gone!! This had to have happened in the last few weeks  of chemo because I am sure I would have noticed THAT! So right now I am feeling like a hairless Mexican Chihuahua.

I hope that isn’t “too much information” for you all but it was such a shock my first reaction when I saw my armpits was to tell Carol “I need to blog about THIS!” (LOL)

So now you know way more about me than you ever wanted to know and I hope I didn’t scare anyone too much. I was going to take a picture but I figured that would be too much. You will have to settle for the pictures of Carol and I at the beach!

Take care everyone and I will update this when I get the results of my next CAT scan. Please keep us in your prayers

Peace and Love

John and Carol and Joey

Viewing pictures

Hi

I just wanted to let you all know that you can double click on any pictures and they will open up in full screen so you can see them better

Enjoy!

John and Carol and Pablo

A new addition to the family

Hi

Carol and I have a new addition to the family!! I added a couple of pictures so you could check out the new guy. Carol heard about him from some of the people she volunteers with at SADD (Saving Animals During Disasters). Apparently the dog belonged to a teen ager who wanted to look like Paris Hilton and carry a Chihuahua around with her everywhere. Well after 2 months she got tired of the dog and started locking it away in a crate all day and all night. The girl’s mother talked to someone in SADD and asked if anyone wanted the dog before she gave him to the pound. Carol heard about it and we decided it was time to have a new dog. The dog met all of our requirements. He was small so that he can travel with us when we fly, he was young enough to be trained by us (he is only 6 months old) and he was a dog that needed to be rescued.

We went over there today and fell in love with him in about 30 seconds! He is amazing! We had to take a 30 minute ferry ride to get to his house and on the way back he crawled into Carol’s lap and fell asleep. Even though Carol was driving, he is small enough that she could keep him while she drove.

He is a little hesitant around men since he hasn’t really had much contact with them so he has really bonded to Carol while I am still trying. We will get there though because I am home during the day while Carol works so I will be his only source of entertainment and he will either bond with me or die from boredom!!

Anyway we are really happy to be dog owners again even if we have to potty train him and get him used to sleeping with us. But its all good and we feel good about saving him from the pound.

His current name is Pablo but we are going to change that, we just haven’t come up with the right name just yet. If anyone has any suggestions, send them to us ok?

Thanks and

Peace and Love to everyone!

John and Carol and “Pablo”

Post Chemo update

Hi

Well its been 23 days since my last chemo session so I thought I would update you on what is going on. Every day I get a little better and a little stronger with the only lingering problems being stamina, mouth sores and “chemo brain”. My stamina is still not that strong in that I cannot do anything physical for very long without getting dizzy and weak. But that gets a little better all the time. I also sleep a lot more than I normally do. I need a lot of sleep still. I still have mouth sores and I cannot eat a lot of foods still. I have medicine for that and it seems to be helping but this is something I didn’t expect to linger this long. If its not gone soon I will need to go to the oncologist for help. And the “chemo brain” is still there which means that I have a hard time concentrating on something very long before I get tired or confused by what I am doing. I also have a difficult time with complicated concepts. What tends to happen is that I just get lost and I have no idea what is going on.

Compared to my last chemo experience this is very good  news because last time I ended up with the peripheral neuropathy which ended up being permanent. Given what happened in 2005 I consider myself lucky to only be dealing with these final side effects. I know the fatigue and the “chemo brain” will eventually go away, I saw the same thing in 2005. I am not too sure what to make of the mouth sores but I just can't believe that would be permanent and even if it was, I can live with it.

I think I am coming out of this round of chemo a lot better than I did in 2005 so I am grateful and happy with where I am. A couple more weeks and I think I will be pretty much back to normal…whatever normal is for me (grin)

 

I will update this blog from time to time over the next weeks until I run out of things to say. That would be a good thing folks!

I hope everyone is healthy, happy and safe!

 

Peace and Love

John

Cool Picture

Hi

Just wanted to throw this picture in the blog, I think its pretty cool

John

The road to recovery

Hi everyone,

I just wanted to keep everyone current on what is going on here at the “Chemo Sux House Of Recovery”. I clearly remember last time that I had such high hopes of approaching a “normal” state fairly soon after the chemo stopped, certainly I expected to be in better shape this week than I am. This week has been a huge battle with the “Southern Port” or diarrhea for the untrained J

Along with that there have been the mouth sores, nausea and generally feeling bad all week. I know it’s a matter of managing expectations but it is so difficult to be patient after all this time.  I want to feel normal because normal will be such a huge step forward. Normal just isn’t happening right now and I have to get my expectations under control because it starts to wear me out mentally when I have to fight all these stupid nitnoid  health problems. Believe it or not it takes a lot of mental energy just to keep from picking up things and throwing them around the room! My frustration level is through the roof and I don't have any patience left for nagging problems. It helps SO much to be able to vent here on this blog instead of choosing some other, more destructive, way of dealing with all of this. Clearly an example where technology has made our lives better (hehehe)

Anyway, I am sick of taking meds for one problem and having to account for the side effects of that med by taking yet ANOTHER med. I want to stop taking this crap and just let my body flush it all out as soon as possible. Let's see…what else am I sick of today? I am sick of the bathroom where I have spent a significant amount of time this week, usually with not much to show for it OR too much to show for it….if you know what I mean.

 

Besides the physical, there is also the mental fatigue. My most difficult thing right now is talking to someone on the phone for more than 5 minutes. I find myself struggling to pay attention and getting extremely tired during the call. I have a really hard time connecting the dots between what we talked about at the start of the call and what we are talking about now. I get exhausted trying to keep up and by the end of the call I am wiped out. Weird huh? I think its partly because you only have so many brain cells to handle what the day throws at you and the majority of mine are busy fending off pain signals from the neuropathy, sick signals from the chemo and probably a little depression thrown in as well.  I will probably have to talk to someone about depression when this is settled down a little, I did last time and it really helped. You have to be very careful not to ignore that part of your make-up (the emotional make-up) because if you do ignore it you will not only get sick again but you will also be short handed in the brain department while it deals with the depression. I don't want anybody to think that I am falling apart here, this is one of the normal things you deal with during chemo and I dealt with it last time and will do so again. Just being aware that you are insane is a good first step I think (lol)

 

So I am off to bed because I definitely need my beauty sleep, even more so than normal!! I will keep you all up to speed on the “End Game” of this mess and I am sure the message will be much more positive next week.

For now I am dealing with it and I will overcome it!!

Peace and Love

John