Feeling better this time around!

Hi all

It looks like the reduction in dosage is helping. Even though I was sick as a dog on Monday and Tuesday, today I am feeling much better and actually was able to work part of the morning! If I have to be sick for 48 hours after the treatments and then can tolerate it I will take  it! I can't expect to feel perfect right?

On top of reducing the dosage, we also got a new drug for nausea this time. It seems to be working much better and it should because this med would have cost me over $1,000!! It is unbelievable to me that we even have to consider paying that much for medicine. Thank God for Insurance is all I can say about that.

 

I am really looking forward to this weekend. Carol and I are going to get together with some friends and do something. I haven’t really been out of the house (except for doctor visits) in 3 weeks.

Overall I am very happy to be feeling so good today and I want you all to know that as bad as this process is, we will get through it and we will get back to normal!!!

Peace and love to all of you

John and Carol

Week 2 Update

Hi everyone,

Well it has been another rough week for us. We went into this week expecting the side effects to be less because we eliminated the Erbitux and we cut the other drugs back by half. You would think that this would result in less side effects right? Well not exactly…I am just as nauseous this week as I was the week after the first session. I was unable to work on  Mon and today (Tuesday) and all I can do is crawl into bed and pull the covers up  and wait for it to get better. The one thing we did NOT discuss with the doctor was the dosage for the pump that I wear for 48 hours after the chemo session. I guess it is possible that this dosage is too high and we need to reduce it as well.  All things considered I am surprised and confused as to why this is hitting me so much worse than the first time. It could be that my neuropathy is making the side effects much more painful but it just seems very odd to me that I tolerated the regimen so well the first time and I am so completely wiped out by it this time.  We will be talking to the doctor again before session #3 and we will see what he has to say.

 

Even though we eliminated the Erbitux, the rash that it caused is still there. It  seems to subside and almost disappear and then without any warning it will flare up and I will have a red acne-like rash all over my face. It  happened today and it really is ugly looking and painful too. So I will need to watch that also. I have to believe that it won’t be permanent after only 1 session but I am leery of any side effect after the battle I have had to go through with the neuropathy which is now a permanent problem for me.

Well that is about all I can tell you about Week #2. I expected better results than I got and I am going to talk to the doctor about reducing the dosage yet again.

So for me it’s back to bed and waiting for the nausea to go away.

Peace and Love to all of you.

John and Carol

A picture is worth a thousand words

Hi

I thought I would show you why Carol is calling me Johnny Popcorn Face!!  This is the rash I have been talking about that is caused by Erbitux. I know I look hideous but it is supposed to go away eventually. I will be asking the doctor when I see him tomorrow if he has any idea on how long it will take to return my face to its natural beauty

Wish me luck!

Peace and Love

Johnny Popcorn Face and his trusty sidekick Kay-Roll

Gearing up for Week #2--Physically and Mentally

Hi
Week #2 of chemotherapy is this Friday. I am feeling pretty much ready for this but I will be meeting with the doctor prior to treatment to go over our plan. Right now we plan on dropping the Erbitux and seeing how things go. After that we will play it by ear. I have to make sure that he knows all the side effects I went through this week in case he wants to adjust the dose on the drugs also. The dosage seems to be based on height and weight and wild ass guess by the doctor. So I want to make sure he has the chance to adjust the dosage if necessary.

Mentally I have been pretty down after the first session, those of you that know me understand that I am not used to being "down" so I have had a real rough time dealing with this. At times I have felt like just quitting the chemo and taking my chances. They really cannot tell you how much better your odds are with or without the chemo. I don't have any tumors so the chemo is strictly to knock out any timebombs that might be growing in there. Since we dont know if there are any timebombs this whole chemo thing is an exercise in risk. But when I think about the pros and cons it is very hard to justify taking any risk unless it's absolutely impossible to continue. Right now it is still someting I know I need to do and so I have been spending this week gearing up mentally for Round 2. I think I am ready to do it and by Friday I will be there mentally. The mental part is much more difficult than the physical part but Carol has pointed out many times that I am very mental...so I have THAT going for me.

Physically the situation is much better really. The nausea is just about down to nothing. I get some major heartburn now and then but so does everyone I guess. The worst part right now is the rash that is on my face. I have it in my ears, on my nose, on my lips, in my eyebrows, everywhere. It burns pretty bad but lotion helps. There is nothing else they can do about that. Since we have eliminated the Erbitux I expect that to gradually go away. I am tired of Carol calling me "Johnny Popcorn Face"!!

I probably wont post until this weekend when I will know more about how bad session #2 is going to be. Keep your fingers crossed and the positive thoughts and prayers going. I am calling all my angels!!
Peace and love
Johnny Popcorn Face (and Carol)

Now I'm batting a thousand!

Hi all,
I'm not sure if I should win a prize or something but I have officially achieved 100% of the Erbitux side effects on the first dose. (Maybe I should call Ripley's Believe it or Not and see if they have a section on Chemotherapy)
Last night a rash started forming on my face and this morning it is really starting to spread. It looks like teen age acne all over again. I have these white heads (called postules I think) all along my chin area, on my upper lip and starting to spread outwards on my face. There are also a few of them starting on my chest. Thank goodness I work from home or I would have to go to work like Michael Jackson wearing my mask! As it is, Carol is the only person who has to see this mess. There isn't anything you can do about it except put lotion on it to keep it from hurting. You also need to stay out of sunlight because sunlight makes the rash worse. Not that I feel going anywhere but still.....
Its not an infection although the rash CAN get infected so I have to be very careful of that. Man, I hate Erbitux!! Obviously there is something about my body's makeup that just does not go well with this drug. Oh well, we are not going to use it anymore so I am hoping this rash goes away soon. What amazes me is that I only had 1 dose of this stuff 10 days ago and every single side effect is happening to me even now. Bad drug, bad reaction, just plain bad news!
On the positive front, the nausea is starting to subside which is great. I still feel run down if I do anything at all but I can live with that. I am just trying to stay positive right now because my second session is this Friday and I am hoping to be strong enough by then to get through it without too much trouble.
I want you to know that I really appreciate hearing from you all, it is an amazing thing to know that there are people out there who are pulling for you even if you can't see them every day. So thank you for your prayers, thank you for reading this blog and thank you for just being there, you are all a blessing!
Peace and Love to all
John and Carol

Day 8 UpD8

Hi,

Today is day number 8 and things are pretty much the same. I have sores all over my mouth and tongue and one of them is even in my throat. It seems like I am the poster boy for every possible Erbitux side effect. The last one on the list is an acne like rash that can get infected. I really haven’t seen that yet but  there are some red areas on my face that look like they would like to become a rash someday soon. There are similar spots on my chest so I fully expect to get this acne-rash and have to deal with that as well. I have conquered my constipation problem and replaced it with diarrhea but at least things are moving through the system again.

Right now the nausea is manageable but still very much there. I feel very run down and I haven’t really left the house in 8 days except to go pick up my new glasses and go to the doctor. I don’t have the energy or the desire to do anything right now except get past this day and see what tomorrow brings.

 

Enough about that, let's talk about something fun!! I have taken a real interest in cactus and succulents lately and today Carol and I potted the ones that GmaJo (Carol’s Mother) sent me for my birthday. I am attaching a picture so you can see what a great gift that was!

I think I like cacti because they thrive almost everywhere, they don’t require much attention and they are almost impossible to kill. That’s a good inspiration for me right now J

Well I have 5 more days to get better before the 2^nd round of chemo but we are removing the Erbitux so I hope the side effects will be more manageable because I don’t think I could manage 6 months of feeling the way I do right now. I would probably make the decision at some point to just stop the chemo and monitor the situation with scans and blood work. There comes a point where the benefits of anything are not worth the cost. I am not there yet by any means but I could see that happening in a month or so.

 

Carol continues to be Florence Nightingale for me. She picks up medication for me, she cooks foods I can eat and she never lets me wallow in self-pity for too long. Please keep her in your prayers as well ok?

Love and Peace to all….

John (and Carol)

What a difference a day makes

Hi everyone,
I just want to drop a quick note to let you know that today was a much different day! The nausea and pain were way down and pretty manageable with medication. I am developing some sores in my mouth which is yet another side effect of Erbitux (the drug we are discontinuing)

I believe that a large part of my chances to beat this have to do with attitude and not giving in to the cancer. Yesterday I will tell you that the cancer was winning, today it is not! I am hopeful that this will continue so that I can get through my 11 remaining sessions without giving in to this disease.

I also believe that faith and prayer play a big part in beating this and I want you all to know that I appreciate your prayers and positive thoughts. Please keep both of us in your prayers because we need them!!

There is a song I heard during my last experience with this called "Calling All Angels" and I just want all of you to know that YOU are our Angels and we are calling on you :)

Love and Peace to all our Angels
John and Carol