Some scary thoughts for Halloween

Hi everyone

Carol and I just got home from spending the day with some friends. We took the ferry over to a small town called Southport where they were having some Halloween activities like pirates shooting  canons off, a sailboat regatta, and I even think I saw a "wench"!! We had a great time but it got me thinking some “scary thoughts for Halloween”

First, it is hard to describe just how much I LOVE the weekend in between treatments!! I have everything going for me: It’s been a week since my last treatment so I feel really normal, I have a whole week until my next treatment, AND it’s the weekend so I don't even have to work. This is something that happens every 7 days for most people, including me when I am not getting chemo, so you start to take it for granted. I know I do. Big deal, it’s the weekend right?..  But I am here to tell you, the song is right: “You don't know what you got till it’s gone….”

 

I think I have mentioned this before but it really hit me hard again today so I have to keep harping on it. It is the simple, easy, uncomplicated, NON-special things that make our lives so special and for that very reason we overlook how important those times are.  Soon they really do become ordinary or ho-hum. But!!! Take them away for even a second and we become very aware of how important those times were, or how special that person is, or how much you love doing something with the one you love.

So how come we can only recognize these obvious truths when they are not available to us? It makes me sad when I think about wasted time, blessings overlooked, and people taken for granted. I’m sitting here thinking about what a “special” day I just had but the only reason I “recognized” it for the special day it was is because I am sick every other week. If not for that I would have taken the day for granted and the people I was with for granted. That is a very scary thought.. even for Halloween!

 

I think I am going to sign off now and go tell the most special person in my life just how special she is and let her know just how special today was.

Why don't you all go do the same?

God Bless.

Peace and Love

(And  Happy Halloween!!))

John

We might be changing doctors

Hi everyone

I wanted to give an update on where we are with our decision to maybe change doctors. Carol went over to the place we are considering (yesterday) and got a good feel for the place. We have heard nothing but great things about this place and Carol felt it was a better atmosphere for us. So today I requested that my current doctor fax over my file so the new doctor can review it. Then I will meet with him and we will either get a referral to the new place or stay put. I really doubt we will stay put at this point but I still have to meet with the new guy.

One thing that would make me stay would be if this change significantly increased my treatment time. I really want to keep going and not have to extend this any longer than it already is. So we will be asking about that.

 

Other than that, I am doing “fair”.  The last couple of weeks I have been back to normal by Wed but I am not normal today at all. I am not all that nauseous but I am dizzy and weak feeling. Yesterday I probably slept for 18 hours and I still feel exhausted. This is a new thing for me so I am going to relax and see what happens. I am sort of able to work but I have had to cancel some meetings because I just could not concentrate enough to talk on the phone.

 

We’ll let you know how it goes though!

I am 25% through this cycle and I am just trying to stay focused on the week ahead of me and not think about how much I have left to do. This is a journey and I know it will take some time

Peace and love to all

John and Carol

Got the Monday Blahhhhhs

Hi everyone

Well its Monday and, as usual, I have severe nausea and feel terrible. But it is about the same as last Monday so maybe we are on a predictable pattern now. I was not able to work today at all and tomorrow may be better but right now I am heading back to bed and pulling the covers over my head.

I am also dealing with really bad constipation so Carol got me some Castor Oil since nothing else seems to be working. I will be sure to update you on THAT tomorrow.

Talk to you soon.

Peace and Love

John

Time to go Shopping

Hi everyone,

Isn’t’ this a cool  picture?? This was one of our turtle patrols that we do every summer. We get to ride the beach in this vehicle at sunrise. We see the most awesome sunrises and have great fun driving this truck up and down the beach. This is one of my heroes, Florence Carol!!

 

 

Now on the latest Chemo Report….

Yesterday was my third session and it has convinced me that I need to get some changes out of my current oncologist or  I need to find another one. I have lost a lot of confidence in my doctor (more on that in a minute) but more importantly than that, his entire support staff,( from the front office, to the chemo nurses, to the appointment makers, to the money takers) are all a huge pain to deal  with. They all act like they hate their jobs and nobody tries to provide a hint of personalized health care to me.

 

Here is a good analogy: My first experience was like going to a Spa. Everyone made an attempt to make you feel comfortable and special and they did their best to give you the best care they could. This experience is like taking your car to  Jiffy Lube. They drive it into the bay, they drain the old oil and put in the new oil and drive it out of the bay. I feel like a car at Jiffy Lube with these people.

 

As for my doctor, in his defense, he listens to me and will do whatever I want him to do. With that said he has screwed up the orders for the chemo drugs 2 weeks out of 3. The first week everything was  right. In week 2 the nurse walked up to me and said “OK now I am going to give you your Oxaliplatin”  Oxaliplatin is the drug that ruined my hands and feet 4 years ago. Not only would the doctor know better from talking to me, but I would NEVER let anyone put that drug in me again.

Sure enough though, he had mistakenly written the orders for it and the nurse had to track him down to get it changed. This is an unbelievable mistake to me…there is nothing worse he could have written on that order than Oxaliplatin.

So because of my reaction to Erbitux in Week 1 we had decided that we would skip Week  2 to get back on track and then for Week 3 we would exchange  Avastin for Erbitux. Fine…except when I showed up  there for Week 3, the nurse had the same orders from Week 2!! It was a xerox copy of the Week 2 and it said “No Erbitux/Avastin” Since the doctor was not available I just said “Fine, who am I to want extra drugs, let's just go without the Avastin, but this is yet another mistake on his part.

 

So what do I do about this? There is another clinic here in town that everyone seems to love so here is our plan. I am going to make a mid-week appointment with my oncologist and let him know how I feel about the level of care I am getting from his staff. I am going to request that I always have the same nurse (the only 1 have seen who knows what she is doing) instead of a different nurse every week. I want him to know that I have lost a bit of confidence in him due to his orders being incorrect 2 out of the first 3 weeks. I am going to request that he review his orders with me before he gives them to my nurse

If he is ok with all that then I might stay….but I might not. I will also be checking out the other clinic and seeing if I should just move there anyway. Carol is going to do the groundwork on that because she is better than I am at asking the tough questions up front, I tend to just trust that everyone knows their job and will do it.

 

That is the plan, its Time to go Shopping for good Oncology care

 

On to the symptoms, they are not so great but tolerable. I think I am feeling slightly  worse this Sat than I was last Sat and it scares me because  the crap is still dripping inside me until Sun so I know that I haven’t reached the worst yet. Last week I was unable to work on Mon and Tues and I suspect that is going to be true, at a minimum this week. Thankfully I continue to have great support from work and I am getting paid without having to use sick days or personal days….

I will try and update the blog on Mon or Tues and let you know if  I hit bottom or if this week is better than last  by some chance but I am thinking it will be the same.

If I had to describe the symptoms its like the worst flu you have ever had with head, stomach, bone pain, nausea, vision problems, dizziness, etc  ….so that all you want to do is lay in bed and pray for the next day to come. In my case I am praying for Wed because I know its not done until then.

But…it is tolerable, it just ain’t fun. And nobody ever said it was easy or fun!!

Peace and Love,

John and (Florence) Carol

Florence Nightingale to the rescue

Hi

Check  out what my nurse is doing for me each night. Carol Nightingale is putting Neosporin on my fingers and bandaging them up for the night. We have found that this is actually reducing the fissures that are already there and has prevented any more from showing up!

I think this might be a medical breakthrough and I am going to recommend it to the newsgroups that I monitor for Erbitux and side effects.

Carol might have ulterior motives here though…this keeps me from getting up in the night and grabbing  myself something sweet to eat!

Anyway just wanted to share this little victory and let you know that I am in good hands here

Peace!

John and Florence

Yet another side effect comes calling

Hi everyone

Ok I officially hate Erbitux. Say it with me “We hate Erbitux, We hate Erbitux”

I guess I was being foolishly optimistic but I actually thought there was one stinking side effect from Erbitux that I might not have to go through. But I was wrong. Starting this weekend I started getting fissures in my fingers right around the nails. This was mentioned as a possible side effect but since I hadn’t seen any signs of it I figured I was safe. What happens is the skin all around my finger starts getting really dry. Then it starts peeling, just like you had a sunburn. Then these cracks (fissures) start happening around the fingernail and boy do these hurt!!! We have tried putting Neosporin on them but its too early to tell if that is working yet. I will have to wait until Friday when I go in again and see what the doctor says but everything I have read about Erbitux suggests that there isn’t much you can do. I read online about a guy who went through the whole 6 month treatment and he got this on all 10 of his fingers and had to wear special gloves because it hurt just to touch things. Right now I have it on two fingers as you can see from the picture but I feel it coming on 3 others. Isn’t that amazing that after 4 weeks and one single session that these kinds of things can still happen? I must be very unlucky because I read about people who go through the whole 6 months and never get one side effect.

 

I picked up a prescription ointment for the face rash that is supposed to help keep it from getting infected so I started that today. I will let you know how that goes since the rash seems to be hanging around longer than I ever expected and it is very damaging to my self esteem to walk around looking like this!

 

Anyway, enough complaining…let's talk about the good stuff. By dropping the dosage we seem to finally have gotten that part right. On the weeks that I get treatment I am sick the following four days and then for the next 2 days I start to feel better and then I have almost a whole week of feeling relatively normal. That is fantastic because even though I complain about the face rash and these new fissures on my fingers, the fact that I have the being sick part under control is far more important. I am very happy to concede 4 days of feeling like crap to have a week of feeling normal. I can do that for 6 months.

The other good thing is that I have a very understanding boss who let's me “do whatever I can” on the Mon and Tues when I am sick without making me take a sick day for it. Basically he is letting me slide on that which is really awesome.

 

Not much else going on, just trying to stay one step ahead of things and not get too discouraged when I can’t.

I wish all of you a heartfelt

“Peace and Love”

John (and Carol)

Johnny Popcorn Face goes Hollywood!

Hi all

I just wanted to see if the Blog would take video clips instead of just pictures. I think it worked so just click on the “Play” button or arrow and hopefully it will work. Please feel free to forward this video to anyone you know in the TV or Movie industry. I’m pretty sure I am on my way to a new career!! With a face like this I can’t lose and you can say “I knew him when….”

Enjoy the video, this film has not yet been rated

Peace and Love

Johnny Popcorn Face

Painting the town....Red??

Hi everyone…Tonight (Friday) Carol and I went with our friends to see a play at the local stage downtown. It was a guy singing Elvis songs and talking about his time in high school. It was ok but the best part was getting out of the house and feeling good enough to enjoy it!! We had a great time at the play and had a quick bite to eat before the show too.

 

My nausea is pretty much at zero so besides being weak and a little dizzy, I feel really good. We are one week from the last treatment and one week until the next treatment so this is my halfway point between sessions. I can handle this and even if it starts to get cumulative I can still handle it.

 

But, as you can see from the pictures we didn’t paint the TOWN red, we painted my FACE red.  Just kidding, but the rash is still not going away and it has been 21 days since I had my one and only infusion of Erbitux. Most of what I read says it should go away around the 28^th day so I am going to wait one more week before I start getting nervous about this being permanent. You can see where I have it on my forehead, my cheeks, my nose, etc but there are other places that you can’t see like inside my ears and on my head.

I did call the doctor and left a message with his nurse asking for the prescription strength ointment that is supposed to help with the burning.

 

Well, its late so I think I will take my hideous self to bed, lol.

Hide the women and children!!! Johnny Pizza Face is on the loose!!!

(Peace…)

John

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