Thursday, December 31, 2009

Happy New Year!

Well it is the last day of 2009 and so its time to put the old behind us and look forward to the new. Today I put Week #8 behind me and I am looking forward to 2010 and only 4 more chemo sessions. 2009 isnt going up there on our list of favorite years but we got through it and we have a clean slate starting tomorrow.  Carol and I are just trying to hold on through the next couple of months so we can put this chemo behind us. Then, once that is done, we are going to find a beach somewhere and spend a whole week relaxing and re-charging the batteries. We have always wanted to go see Sannibel Island which is off the coast of Florida and is known for lots of sea shells and sharks teeth. I will be on disability but the plan is to try and delay the disability long enough so that I am recovered enough to enjoy the week at the beach. With 2 sessions in Jan and 2 in Feb we are probably going to try for mid March. Can’t wait!! We will definitely deserve it by then!

 

As for my treatment plan, we decided to adjust the dosage down just a little bit. The doctor was concerned about the way I am handling the full dose so we are splitting the difference between a full dose and a ¾ dose. Do the math but that is something like a 7/8 dose J

All my blood work is still within range but the platelets were pretty low. If they continue to drop by the next session we may have to skip a week to build them back up. I am really hoping that doesn’t happen, I want to keep going until this is done!!!

 

Well I better get going, we have a few friends coming by for some appetizers and I need to go make sure I look acceptable. I don't get out much J

Peace, Love, and Happy 2010!!

John and Carol

Tuesday, December 29, 2009

Week 8 already??

Hi everyone,

We are just about ready to start the treatment for Week 8 (on Thur) and I don't feel ready at all.  I have been sick in bed or on the recliner every day since the last treatment on Dec 18th with just a few hours here and there where I felt even close to normal. I am really worn out and run down and now Week 8 is upon me! I do have the option of backing off on the dosage this week and just going with a ¾ strength dose, but I feel that this is cheating the system and I am not getting the full benefit of the chemo. On the other hand I am sure that the next 2 weeks will be absolutely brutal if I take the full dosage. As of today I don't know which way to go but I am leaning to taking the full dose and seeing what the next 2 weeks are like and then adjusting it at that point. At least I will be 9 weeks in of the 12 week program which is 75%.

 

I have worked out a deal with my boss where I am not going to go on disability unless I absolutely have to. He has given me some little special projects that don't require much effort so that I can stay on full pay. He has taken all my other normal tasks and spread them around to others on our team. I certainly am blessed to have him as a boss but even with his help I know I will hit disability at some point. My plan is to go as long as I can and then take the 6 weeks at full pay to recover. So if I finish up the chemo in Feb, I might just take a 6 week vacation after that. I would get full pay and I would not have to work. It would be a good recovery time and hopefully Carol and I could go sit on a beach somewhere and relax.

 

Anyway, this is all in the future, right now I am focusing on the next two weeks. Please keep us in your prayers, its going to be very tough.

Peace and Love

John

Saturday, December 26, 2009

A major struggle this time

Hi everyone

(Here is a Hershey’s Christmas tree ornament from GMAJO!!) Thanks GMAJO!!

Also a picture of Carol showing off some new earrings!!

Merry Christmas to you all, I hope everyone had a great holiday! Me, not so much I’m afraid. This time I had totally atypical week. First I got the chemo last Friday and I was sick through Tues as expected. I started to climb out of it on Wed when “BAM!!” it hit me again. It was almost like someone snuck in the house and slipped me another treatment. But this one was worse. I was so sick yesterday that I barely remember the day. I was in bed most of the time and pretty much incoherent on the recliner the rest of the time. I am so nauseous, I have mouth sores that won't quit and I am dizzy and not with it at all.

 

I’m taking my meds and they help but they also put me out of commission so I have been out of it for over  a week now without being able to work or do much of anything else.

I fully expect to go on disability starting the first of the year, or at least, I will modify my schedule significantly. My boss is  trying to do anything he can to keep me off disability but I am not sure it’s the right thing for me to do any work right now, even if it would keep my take home higher..its not about the money right now, its about surviving the chemo and I don't know if I can do both.

More to come on that.

 

For all you family and friends who I said I would call, you are still on my list and in my heart, I just cannot handle it right now. Please keep us in your prayers, we are in the home stretch and its very difficult for both of us.

 

This week we are having treatment #8 a day early (on NY EVE) because of the holiday. I can't wait! What a thing to look forward to for the start of the year. If you can't tell, I am a bit depressed about the whole thing right now, but that will go away too.

Take care everyone and we will catch up with you in 2010!

Peace and Love

John

Monday, December 21, 2009

Week 7 update

Hi everyone…its time for the Week 7 update and I guess its all as expected. I am at my maximum dose and certainly feeling it today. I am maxing out on my nausea pills but still feel very sick and unable to work or do much of anything. I can handle the nausea but I am waiting to see if the vertigo or mouth problems show up. If they don't, and its just the nausea then I will feel lucky and just hang tough.

The doctor said he didn’t think the vertigo was related to chemo as all my blood came back normal so we are just going to watch and wait. It was possibly an inner ear infection  or something like that. As for the mouth sores, that seems to be hit or miss so again we wait and watch.

My brother and his son came down last week and spend Wed-Mon with us so that was a great treat. I am attaching a picture of my brother (Paul) and his son (David) along with Carol and me at lunch last week. We had a nice visit, especially seeing David who is living in China for a few years teaching English as a second language to people in China. He will be heading back for one more year and then returning to the States to get his masters.

 

Other than that its pretty much normal stuff for us…get through the chemo, enjoy the good times when you can and looking forward to Christmas!

I am looking at 5 more sessions of this nastiness and then I am free again!! This time we are not going to look too far forward and just hope for the best and pray for clean scans from now on!!

Peace and love to all of you!

John and Carol

Tuesday, December 15, 2009

Time to Fight Back!!

Hi Everyone,

Now that we are past the half-way point in the chemo treatment, its time to get serious and start fighting back. Check out this picture…this is me getting into “fight back mode” I am going to start kicking butt and taking names (of side effects) later!

 

Between the guns and the tats, this is not someone you should take lightly. Stay angry my friends!!

LOL….

I must be losing my mind because this is funny, funny stuff

John

Blood work came back ok

Hi everyone

Well the mystery continues…...my blood work all came back normal (at least for the things they test for) so now we have to start thinking that maybe this is something unrelated to cancer. One  pitfall of cancer, if you aren’t careful, is that you tend to associate everything that happens to you with it. It is just as likely that I have some condition that shows itself as vertigo. Who knows, I don't have time to be sick right now, I’m too busy having cancer!!! LOL….

 

Seriously my plan is to just ride this out for a couple of weeks with the meds I have and see what happens. It will either go away or it won't and then I can work with my primary physician on it.  I’m sure he is going to love trying to figure this one out!!

 

I did have a pretty good week overall though, no mouth sores this week!!

 

I head to Week 7 on Friday as strong as can be expected given where we are. I am starting to feel the cumulative effects of the chemo though. It is taking almost the entire “free” week to recover from the “bad” week, which leaves little to no time to get caught up for the next round. I especially notice this at work..my concentration is shot and I have a very difficult time doing the most basic tasks. I know I will be going on disability here shortly..probably after the first of the year. That’s ok though, I have great benefits for this and my boss is very supportive.

 

I hope everyone is almost ready for Christmas. Take some time this week and stop rushing around and think about what is important, like…”I wonder if I will get any chocolate for Christmas??”

Peace and love…and chocolate for ALL my friends!

John

Monday, December 14, 2009

More on Week 6

Hi

Between yesterday and today the dizziness and loss of balance that I am having got quite a bit worse. I feel like I am on a merry go round even when I am just sitting in a chair. When I move my head it seems to move in stages causing me to feel like I am leaning or falling down.

We called the doctor and he said it might be that my blood pressure was too low but that wasn’t the case so he had me come in and give some blood so they could do a work up. That was this morning and I haven’t heard from them yet. They did give me a pill that helps the spinning feeling and it seems to be helping a little bit but this is pretty weird.

 

Driving is out of the question and walking is an adventure by itself. If I am not careful, I end up bouncing off the wall J I have to stand up very slowly, get my bearings and walk very slowly to where I am going. If I don't have something to hold on to it feels like I am going to fall down

I sure hope they figure out what is going on. It might be an infection that is causing the balance problems but who knows??

 

I will update you all as soon as I hear something but for now I am just going to stay in my chair (or bed) and wait for it to go away!!

Peace and Love,

John

Sunday, December 13, 2009

Week 6--An unusual week

Hi everyone,

First, here is a picture of Carol and her new ear rings and also a picture of her with our friends.  Last night we went out to dinner and then went to these gardens that were decorated for Christmas. It was pretty cool and doesn’t Carol look cute too J?

 

I apologize for not keeping this more up to date but it has been a very unusual week. The first part went normally and I was sick for the first 3-4 days and it was pretty bad. But then, instead of getting back to normal I started feeling really dizzy and I also had to deal with the worst heartburn I have ever had.

 

First to the dizzies…One of my routine tests keeps showing that my Vitamin D levels are low or as the doctor says “Profoundly Low”. I can't remember the exact number but I was so far out of normal range that it wasn’t funny. Anyway, I asked him what we should do and he prescribed a Vitamin supplement and we would check it in 6 months. When I asked him what he would be worried about if a patient had consistently low Vitamin D levels he said “risk of breast cancer…if you were a woman” J Since I am not a woman I am not sure if we worry too much about the Vitamin D until we do another test in 6  months. I only bring it up because the dizziness I felt after this week’s chemo felt like it was fairly serious and was not just a little light headedness…I don't know how to describe it but I think you know what I mean when you can just tell that something is not right with your body. Either it’s a chemical imbalance or something else is out of whack, doesn’t matter…you can just tell right?? Well that is how I feel about this dizziness. This is not the kind of dizziness where you feel a little light headed if you get up too quick…this is the kind of dizziness where you have to hold on to the wall while you walk down the hall or you will stumble. I have to grab hold of the kitchen counters to get myself around the kitchen.

I know this is not right so I will be calling him  tomorrow to see what he says. I know he is going to want blood so we will see what we see. Something is not right inside me J

 

Besides that, this week has been spent dealing with bad, bad heartburn. This is a known side effect of one of the drugs..(I can't remember which one right now) so I need to let him know about that. Its really bad, to the point where even a glass of water feels like I drank some broken glass. Laying down in bed is really tough too because it seems to make it worse.

 

So between the heartburn and this weird dizziness it has not been a normal week. It hasn’t been horrible either though. I guess I will take dizzy over nauseous any day, except this has me kind of worried until we figure out what is causing it…it might not even be chemo related, maybe something else is messed up inside.

Oh well, we will figure it out this week I’m sure.

This is a special week also..my brother and his son are coming down from upstate NY to visit us for a week and we can't wait to see them. My nephew is spending some time teaching English in China so I’m sure he will have some interesting stuff to talk about!!!!

 

I will let everyone know what is going on with me after next week. It is probably just something temporarily out of whack so we will figure it out and fix it!!!

 

Peace and Love to you!

John and Carol..

Tuesday, December 8, 2009

Week 6 Update

Hi everyone,

Well week 6 is complete but it is a rough one for me. I was in bed all day yesterday feeling very sick. Today is a little better but still very nasty. Carol called the doctor and he prescribed a stronger anti-nausea pill so Carol got that this morning.

I’m glad this marks the half way point because it is starting to build up in me. I can tell because I get sicker each week and it takes longer to recover. I might have to look into going on short term disability if this keeps up.

I’m off to bed but I will update some more later this week.

Peace and Love

John

Tuesday, December 1, 2009

Gearing up for Week 6

Hi everyone

Since this week is a “good” week for me I don't want to talk about chemo, side effects of chemo or cancer. This week I am just focusing on the good things and there are so many of them that this time is just a bump in the road as far as I am concerned. I have been so blessed in my life in so many ways that I can only be grateful for everything that has happened to me, cancer included.

Today I feel lucky just to be alive and to have the family and friend that I have…and that’s all I am thinking about today.

So if you wanted to hear anything about chemo, or cancer or side effects…wait until next week!! This week is a good week.

Peace and Love

John

 

PS This picture was taken on a boat that I rented on Carol’s birthday 2 years ago for a ride up the Cape Fear River..you can see part of Wilmington in the background and 2 extraordinarily good looking people in the foreground J

Sunday, November 29, 2009

Week 5 done!

Hi everyone,

We just got through the 5th week without too many problems. There are some minor annoyances going on now like the fact that the inside of my mouth hurts like hell. Chemo does kill your taste buds and other cells in the mouth area so this is not unexpected but it is a pain in the butt. I cannot enjoy anything that has salt or pepper on it because it burns the heck out of my mouth. The only foods that don't “hurt” to eat are cold, non spicy foods like…ice cream!!  Anything that is hot (cooked) burns my mouth and anything that is spiced burns my mouth so ice cream is the perfect solution. Chocolate works too but everyone knows the benefits of chocolate over cancer right?? ;)

 

Week 6 is coming up this Friday and that is also the half way point!! They will be adding another 50% to the dosage from last week so this is going to be the highest dosage I get from here on out. If it is too much we might drop back on it but we will see after next week.

 

In the meantime Carol and I are decorated the house yesterday and today so I will try and get some pictures soon

I hope everyone is having a great Turkey Weekend!

Peace and Love

John and Carol

Wednesday, November 25, 2009

HAPPY THANKSGIVING!!

Hi Everyone

Happy Thanksgiving to you all!

 

Well I had my 5th  session this past Friday and they bumped up the dosage as promised.  I felt about the same on Sat and Sun that I usually do. Mon and Tues were worse than normal but not impossible. I was definitely more nauseous and came pretty close to throwing up a few times but I got through it. Today (Wed) is a pretty good day and I expect to be back to normal by tomorrow for Turkey Day!  Carol and I are headed over to our friends house for the big turkey cook-off. It will be our traditional turkey against their fried turkey. May the best bird win!

 

This being the season for giving thanks, I can definitely say that I have much to be thankful for. I may be having some bad times with this disease but I am also lucky enough to have so many people thinking and praying for us! I want to thank all of you for your prayers and positive thoughts because it really does mean a lot to me. I am so lucky to have the kind of support that I have, starting with Carol,  and then to all of our family and friends.  I feel very lucky, very grateful and I thank everyone for all that you have done!

I hope you all have a great turkey day and our thoughts and prayers are with  you all.

Peace and love,

John and Carol                          

 

Thursday, November 19, 2009

Week 5 preview

Hi everyone

(This is a picture we took last week at the beach. As you can see, I am not losing any weight from the chemo yet!!)

I haven’t had much to talk about lately because Week 4 went so well. Week 5 is tomorrow and they are bumping up the dosage by 50% so I will be expecting a little longer recovery time and a little more nausea and sickness. They are going to do another 50% on Week 6 which will effectively double what I am getting right now. After that we remain at that dosage. So the next 2 sessions are going to be interesting. Stay tuned for updates on that.

Otherwise things are going very well and I am looking forward to the half way point in 2 weeks!!

So far so good I guess.

Take care and I will be updating everyone early next week

Peace and love!

John

 

Wednesday, November 11, 2009

Time to start ginding it out

Hi

Just want to let everyone know that this week has been a breeze!! I am not all that sick and we are now into Wed night so that is usually my “get well” day. I wish I could stay at this dose for the rest of the treatment but I can't. I think I talked about the fact that we need to bump up the dosage to be at an effective level. I have gotten a bit of a break by switching doctors; I got an extra week at the lower dosage. Shhhhhh!!! Don’t say anything ok?? J

I am trying not to think about the increased dose and all that and instead I am trying to focus on just getting through this and coming out the other side. I know I can grind it out for 8 more sessions. I think this puts me around Feb 26th or maybe a little bit after if I  have to skip a week somewhere. This happened last time, I had to skip a week because my white blood cells were pretty low and they just pushed it back a week.

I’m kind of bummed that this has to be going on over the holidays but Carol and I are planning a “Post Chemo Vacation” to make up for it. We haven’t made any decisions but I am thinking that going somewhere nice and warm in March or April wouldn’t be a bad thing.

Speaking of the holidays; my brother and his son are coming down for a few days so I am very much looking forward to that but I think our Holiday plans are pretty limited by the chemo so I doubt we will be going anywhere. That’s ok though, we will make up for it after.

 

There isn’t a whole heck of lot else to talk about except I do have once big complaint. How in the heck could you people vote for Carol or the dolphin over ME in that picture????!!?!? I looked fantastic  (way better than the dolphin) so I think there is some funny business going on with the voting situation. Get real people!!! LOL

Take care everyone…of yourselves and of each other…

Peace and love to all

John

Friday, November 6, 2009

What a difference!

Hi all..

I went to my first chemo session at the new place and what a difference! The nurses actually make you feel special and they care about you. They serve you lunch if you are there during lunch time and today I got to hang out with Buddy Love for 5 minutes. Buddy Love is a rescue golden lab that has been given some training so he can come out to places like the chemo center and let people pet him and tell him what a good boy he is. Buddy Love and I had a good first meeting and I am looking forward to seeing him again. He is probably around 8-9 years old and very patient. One of the nurses started scratching his ears and he just laid down on the floor and put his head right in her lap.

Anyway that is the kind of special touch that makes this process go by a little better and it is like night and day compared to the Jiffy Lube attitude I was going to.

 

The anti nausea medicine they have me seems to be working well. I don't feel as sick today as I did last Friday but we will see what happens.

For what its worth I am in a much better frame of mind than I have been and I think this move was the right thing to do.

It was all my idea, not Carol’s (LOL)

Peace..and Love…

John and Carol

Thursday, November 5, 2009

I have a new Doctor

Hi everyone,

Carol and I had an appointment with a new doctor  yesterday and it went great! This is the place for me. They are very much like the office I used for my first round of chemo and everyone is extremely kind, efficient and concerned with my well being. They even have pet therapy where volunteers bring dogs around for you to play with during chemo! My first office did this and it was very cool. They also have massage therapy because many chemo patients have neuropathy from the drugs. A person will come around and massage your feet or hands during chemo. I can't wait but I bet they aren’t as good as Carol!!

 

My doctor (Peter Ungaro) is an older man and a little bit goofy but very good. He understood what I wanted and listened to me. He is letting me keep Friday as my appointment day which works very well for me and work. He did say that the level of drugs that I was on probably needed to be increased. The reason for this is that my first doctor started at the maximum and when I got so sick he cut it in half. The better way to go is to start low and gradually increase the dosage. So we are going with the low dose this week but we will be increasing the dosage after that. Basically we need to go from 250Mg to 500MG in order to get the most out of it. When he heard how sick I got at the 500MG level he prescribed 2 different anti-nausea drugs for me. So I have those ready to go and I will take them as we increase the dosage.

 

So tomorrow is my 4th session and after that I will have 8 more to do so after tomorrow I am 1/3 done!! I know I have some rough days ahead of me once they increase the dosage but I really think having the right doctor and the right staff will help. Of course the additional medications will help too.

 

Other than that I am feeling pretty good. I have something weird going on in my mouth where foods with any spices in them burn really bad but that is probably due to the chemo killing off taste buds. Chemo kills any fast growing cells in your body and this regimen is geared to your digestive tract since the cancer  originated in the colon. Some fast growing cells are actually GOOD for you like taste buds, red blood cells and white blood cells. They don't have a good way to differentiate good fast growers from bad fast growers so that is the price you pay: Anemia from low red blood cells, risk of infection from low white cells, and crazy mouth problems from dead taste bud cells. Plus the nausea and constipation and all of that of course.

 

Anyway that is the update from this end. Carol is still the best nurse I could hope to have and she is taking very good care of me!

Peace and love to you all..

John

Saturday, October 31, 2009

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

Wednesday, October 28, 2009

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

Monday, October 26, 2009

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

Saturday, October 24, 2009

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

Wednesday, October 21, 2009

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

Monday, October 19, 2009

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)

Saturday, October 17, 2009

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

Friday, October 16, 2009

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 28th 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

Wednesday, October 14, 2009

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

Tuesday, October 13, 2009

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

Thursday, October 8, 2009

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

Wednesday, October 7, 2009

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)

Sunday, October 4, 2009

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

Saturday, October 3, 2009

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 2nd 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)

Thursday, October 1, 2009

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

Wednesday, September 30, 2009

We need a new plan!

I haven't posted in the last few days because the drugs in this first round sent me straight to bed. The side effects on Mon and Tues were worse than anything I experienced during the 6 months of side effects last time!
I was sick as a dog and not getting any better so Carol got me in to see the doctor yesterday. I had just spent the last 24 hours in bed and she was worried. The doctor agreed that something was making the side effects much worse than they should be. We suspect it might be the neuropathy from the last chemo. Neuropathy messes up your nerves and can heighten pain so he things the normal nausea and pain you feel are being magnified. Could be, all I know is I could not possibly do 6 months of THAT. We figured out what druge we think is causing the problem and he is going to leave that out for awhile and see what happens.
This means I do not have to go every Friday but every OTHER Friday since the drug he was going to give me on the off Friday is the one we eliminated.
I doubt I will be going back on that so we might have to find an alternative drug or just go with what we have.
At this point I am so beat up and sick from what I did last Friday that I can barely get out of bed. Today is better so I wanted to post what was going on.
I am comfortable with whatever we end up doing. I believe I will be ok and will get past this and on with our lives.
Carol has been a wonderful nurse and all of you should know how much this battle is being fought by US not by ME!
Love to all....
John

Sunday, September 27, 2009

Getting the port removed

Hi everyone

Well Week 1 is officially in the books now! The lady from the home health company will come over to our house every other Sunday and remove the port so I don’t have to be hooked up to that for 2 weeks and I am not getting any more poison going in me until next Friday.

Carol took some pictures of what the port removal process looks like but there were some that might be inappropriate for everyone so we put them over on the Adams Family website so that we don't scare anybody J
 

It’s really not that bad of a process, they just come out and clamp the line between the port in your chest and the bottle that goes in a bag around your waist. Once that is clamped off, she removes the lines from the port and then pulls the needle out.  To make sure that everything is ok she also pushes some saline solution through your port. That is the part that is kind of messy because she has to make sure the port is clear. In order to do THAT she has to draw some blood out of the port and push it back in. I figured you could all live without seeing that!

In retrospect, the first week was not all that bad. I was more nauseous than I remember from the first week of last time but my sister Murphy is correct: “Every cancer is different and every person reacts differently to it” I really need to try and remember that because I will drive myself nuts trying to compare this time with last time. I just need to worry about this time and I need to do that one step at a time.  On the flip side I have not seen any of the other possible side effects yet so that is a good thing!

 

We have taken the first small step and have many steps left to take on this journey, but we are off to a decent start. This is  a journey that nobody takes by choice, but it can become a memorable and important journey in your life if you approach it right. I don't have all the answers on how to do that but I have an idea of how to do that for ME.  So here are some ways I can make this a memorable journey:

 

1.       I won’t ever let it see me scared! I am always in control of my destiny except for those times when God is in control. Between the 2 of us we can figure this out J

2.       I will document what happens to me, what I feel about it, how it affects the other people in my life, etc. I will do this through words, pictures or whatever else I can think of. When I started talking about this journey, I thought it was a way for my family and friends to read about what was going on. I realized that this was only a small reason why I do this. The major reason is that it helps ME to sort out my feelings, my fears and get some semblance of control back in my life.

3.       Lessons Learned: It is truly amazing the way you can cut through the BS and see some things so clearly when you have the possibility of death looking you in the face. I learned some very important Life Lessons the last time I had cancer but not as many as I expect to learn this time. Last time we approached this as more of an “inconvenience” than a life threatening disease. This time it has 100% of my attention 100% of the time and I hope to learn even more this time around. I don't know if any of the stuff I write about what I learned will apply to anyone who reads it, but I am kind of hoping that I do reach someone, somewhere who can “get it” earlier then I “got it”. Hey, you never know what might happen. Just remember to “Play it Forward” J

 

I think that’s it for now. Next Friday I go into the office but I only get 1 of the 4 drugs and I don't have to be on the pump all weekend. So the even number weeks are GOOD weeks. If you want to know if it’s a good week or a bad week for us just figure it out like this:

 

Bad Week: Every other week starting on Friday, September 25th will be the start of a BAD week

Good Week: Every other week starting on Friday, October 2, will be the start of a GOOD week.

 

Feel free to forward the link to this blog to whoever you want, I say the more the merrier. If people want to “follow” the blog there are instructions on the page that will walk you through that. This means that whenever I make a posting here it will automatically go into your in box too. That way you don't have to check here all the time to see if you missed anything. You have to Sign Up for Google in order to do this and it might be too confusing.    If all you want to do is leave a comment, you can choose “Anonymous” as your option and then put your name in the body of the post. Simple as that.

Take care everyone, thanks for all your prayers and gifts.

Peace and Love,

John

Friday, September 25, 2009

Week #1 is Done


(Sorry if you get this post a million times in your inbox. It is 10:30 and I am trying to do this with some chemo fuzziness in the brain. I think I am really done now)

Well  I have good news and I have bad news. Let's get the bad news over with: I found out today that the plan he wants me in will include the Erbitux in addition to the standard colon cancer program (5Fu. Leucovorin, etc). There are 2 downsides to Erbitux, the first being the fact that it generally (80% of the time) results in a pretty serious rash around the face, neck and hands areas. Like Neuropathy it is supposed to go away after the treatment stops but we all know that the Neuropathy did NOT go away for me. So I will watch this very carefully and might drop this drug at the first sign of problems. The second downside to Erbitux is that it has to be given WEEKLY not Bi-Weekly like the other drugs. For as long as I can handle the Erbitux my program looks something like this:

1.       Week 1—10:00 AM-5:00 PM (7 hours) where I will get blood, then see the doctor so he can review my blood  levels then chemo. Then I take the pump home and they will “Pump Me Up!) for 48 hours. They come to the house on Sun and remove the pump
2.       Week 2—8:30 AM-10:30 AM (2 hours) where I will get the Erbitux only, no seeing the doctor and no blood test.
3.       Week 3—10:00 AM-5:00 PM (7 hours) where I will get blood, then see the doctor so he can review my blood  levels then chemo. Then I take the pump home and they will “Pump Me Up!) for 48 hours. They come to the house on Sun and remove the pump
4.       Week 4—8:30 AM-10:30 AM (2 hours) where I will get the Erbitux only, no seeing the doctor and no blood test.

Etc, until we get to week #24 sometime in March. 

Week #1 is DONE and I included a couple of pictures (look up) that shows you what the chemo room looks like and where I sit
If you want to see more Chemo Pictures I have created an Album which you should have gotten an invitation to already. If not, the link is: http://www.joca.myhphome.com/Webshare/ViewPhotos.m?username=ja&mac=a997f29fd9455a32beb74f43730f7e0&albumId=14

These pictures were taken at the end of the day. Most of the chairs you see were occupied during the day but they all got to go home before me because I have a very long day and then I have to wait for the pump lady to come by and give me the pump.

Here is the motto that Carol and I had for the first Chemo Journey in 2005-2006   “Stayin’ Alive in 05” and  “Getting Our Kicks in 06”
Here is the motto that Carol came up with our second Journey in 2009-2010        “Doin’ Our Time in 09” and  “On the Road Again in 2010”
This really  is OUR JOURNEY, not MY JOURNEY, so when you are saying some prayers or sending good thoughts out please include Carol. In many ways this is just as hard on her as it is on me and she has a tough road ahead of her also
So far I don't have any really bad symptoms. I do feel a little nauseous and my ears are ringing. Basically its like a cold or flu symptoms. This is only Week 1 though and the effects are cumulative so by the middle to the end of this probably would not be able to work but it is too early to start thinking about that. For now we try to eat well, sleep well and relax!!
Week 1 is Done and so am I. Carol and I are going to bed! It is 10:30 PM on Friday
Peace and Love to everyone
John  

Wednesday, September 23, 2009

Another Reason to Keep Fighting--Rainbows!

Hi

Here is “Another Reason to Keep Fighting—TWO reasons actually.

First, you get to see incredible rainbows like this over the ocean once in awhile –See the first picture

Second (and only if you are really lucky) you will find your soul mate at the “end” of the rainbow instead of a pot of gold –See the second picture

Reasons To Keep Fighting--Reason #159, Great Sunrises!

Hello everyone…

Today  I had my port put in.  The same guy who did my liver surgery did it and he put it in the same place that I had it last time, high up on my left chest just a little lower than the shoulder blade.  I will send a picture out after the tape comes off it so you can see what it looks like. It was an easy procedure. We got there at 5:30 AM, got set up and started the procedure by 7:30 and we were out of the hospital by 8:30. Carol and I were napping by 9:30 J

 

I think I am going to start putting a section into each of my blogs where I give “Reasons to Keep Fighting”.  Today’s reason is to see the fantastic sunrises (and sunsets) that we get here. Carol tool these pictures off the back porch earlier this week.

 

If anyone of you want to share your “Reasons to Keep Fighting” please post them here or email me and I will post them for you.

Friday is the first day of chemo so I will be back telling you about that in 2 days

Love to  all,

John

Tuesday, September 22, 2009

How do you live YOUR Dash?

If there are any silver linings in dealing with cancer in your life, one of them might be that it serves as kind of a “2 minute warning” (to use a term from football). In other words you get fair warning from the “Head Official” that time might be running out on your game and you might want to use the rest of your time wisely. This poem, that I got from my sister, is helping me use my 2 minute warning to look at my “dash” a little more closely. I hope you enjoy it and I also hope it makes you think about YOUR dash because even if it is not time for your 2 minute warning, it’s not too early to start thinking about it.

Peace and Love,

John

 

 

How Do You Live Your Dash?

 

I read of a man who stood to speak at the funeral of a friend

He referred to the dates on her tombstone from the beginning to the end.

He noted that first came her date of birth and spoke the following date with

tears, (1934-1998)

but he said what mattered most of all was the dash between those years.

 

 

 

For that dash represents all the time that she spent alive on earth...

and now only those who loved her know what that little line is worth.

For it matters not, how much we won; the cars...the house...the cash,

what matters is how we lived and loved and how we spent our dash.

 

So think about this long and hard.. are there things you'd like to change?

For you never know how much time is left, or waht can still be rearranged.

 

 

If we could just slow down enough to consider what's true and real,

and always try to understand the way other people feel.

And be less quick to anger, and show appreciation more

and love the people in our lives like we've never done before.

 

If we treat each other with respect, and more often wear a smile,

Remembering that this special dash might only last a while.

So, when your eulogy's being read with your life's actions to rehash,

would you be proud of the things they said about you and how you spent your

dash?

Sunday, September 20, 2009

Chemotherapy Side Effects

Hi

I thought it might be interesting to tell you exactly what drugs they are going to use for this round of  Chemotherapy and what side effects you need to watch out for with each drug. First  though let me describe the room where you get the treatment. Imagine a big open room filled with about 50 leather chairs that resemble barber  shop  chairs. They recline and spin around like the old barber shop chairs did.  Beside each stool there is a long metal pole that looks like a broom stick with hooks on the end of it, on a base with wheels. This pole is where they hang the bags of drugs from (For intravenous delivery) The bags have plastics tubes that attach directly to the port in your body. The pole is on wheels in  case you need to get up and go to the bathroom or go see a doctor while they are giving you the treatment.

 

So these chairs are all lined up in rows, some facing each other, some facing a window but they are scattered all over. You go in and sit in your chair and the nurse brings over your drugs. Some of the drugs can be dumped into at the same time but some need to go in all by themselves. The port is set up  to allow them to put 2 drugs in at once. Basically  I will be sitting there for about 5-6 hours getting my drugs. Because the drugs are room temperature they feel very cold going into your body so they have warm blankets that you can use and they tell you to bring your own blanket or whatever will keep you warm. You also need to bring snacks and drinks because you will be there all day.

 

After they have all the drugs in you, they have to keep you there for an hour or so to watch you because one of the drugs I am taking requires that. There have been some instances where people have had a very bad reaction to it and they need to keep you under observation in case you need to go to the ER.  Anyway, that is how it works. I will try and get a picture of the room next week when I start.

 

So here are the drugs they are going to give me and the side effects of each one. I will be getting the first 3 drugs for sure. The doctor is waiting to get the results of a test back before he decides between #4 OR #5. It will not be BOTH. I took Avastin during my first round of Chemo and I did not experience any of the bad symptoms..just nausea and general weakness.

 

1.     CPT-11 (Irinotecan)-

a.       Common side effects occurring in greater than 30% of the people who take it

§  Diarrhea; two types early and late forms.

§  Early diarrhea: Occurring within 24 hours of receiving drug, accompanied by symptoms runny nose, increased salivation, watery eyes, sweating, flushing, abdominal cramping. (This can occur while the drug is being administered. If so, alert your healthcare professional promptly. Medication can be given to stop and/or lessen this early side effect).

§  Late diarrhea: Occurring greater than 24 hours of receiving drug, usually peaks at about 11 days after treatment. Because of concerns of dehydration and electrolyte imbalances with diarrhea it is important to be in contact with health care professionals for monitoring, and for medication and diet modifications advice.

§  Nausea and vomiting.

§  Weakness.

§  Low white blood cell count. (This can put you at increased risk for infection)

§  Low red blood cell count (anemia).

§  Hair loss

§  Poor appetite

§  Fever

§  Weight Loss

b.      Less common side effects occurring in about 10-29% of the people who take it

§  Constipation

§  Shortness of breath

§  Insomnia (see sleep problems)

§  Cough

§  Headache

§  Dehydration

§  Chills (see flu-like symptoms)

§  Skin rash (see skin reaction)

§  Flatulence (see abdominal pain)

§  Flushing of face during infusion

§  Mouth sores

§  Heartburn

§  Swelling of feet and ankles

2.     Leucovorin

§  Allergic reaction: rash, itching, facial flushing. Rarely severe

§  Nausea and vomiting Shortness of breath, wheezing, difficulty breathing, closing up of the throat, swelling of facial features, hives (possible allergic reaction).

3.     5-FU—Fluorouracil

a.      Common side effects occurring in greater than 30% of the people who take it

§  Diarrhea.

§  Nausea and possible occasional vomiting.

§  Mouth sores.

§  Poor appetite.

§  Watery eyes, sensitivity to light (photophobia) (see eye problems).

§  Taste changes, metallic taste in mouth during infusion.

§  Discoloration along vein through which the medication is given.

§  Low blood counts. Your white and red blood cells and platelets may temporarily decrease. This can put you at increased risk for infection, anemia and/or bleeding.

b.      Less common side effects occurring in about 10-29% of the people who take it

§  Skin reactions: Dry, cracking, peeling skin. Darkening of the skin (hyperpigmentation), darkening of the skin where previous radiation treatment has been given (radiation recall).

§  Hair thinning.

§  Nail changes - discoloration, loss of nails (rare)(see skin reactions).

§  Hand -foot syndrome (Palmar-plantar erythrodysesthesia or PPE) -skin rash, swelling, redness, pain and/or peeling of the skin on the palms of hands and soles of feet. Usually mild, starting 5-6 weeks after start of treatment. May require reductions in the dose of the medication

4.     Avastin—Bevacizumab

a.      Common side effects occurring in greater than 30% of the people who take it

§  Generalized Weakness

§  Pain

§  Abdominal pain

§  Nausea & vomiting

§  Poor appetite

§  Constipation

§  Upper respiratory infection

§  Low white blood cell count. (This can put you at increased risk for infection.)

§  Proteinuria (see kidney problems)

§  Nose bleed (see bleeding problems)

§  Diarrhea

§  Hair loss

§  Mouth sores

§  Headache

b.      Less common side effects occurring in about 10-29% of the people who take it

§  Shortness of breath

§  Dizziness

§  High blood pressure

§  Weight loss

§  Muscle aches and pains

c.       These are rare but serious complications of Avastin therapy

§  Gastrointestinal perforation/ wound healing complications

§  Hemorrhage (severe bleeding)

§  Hypertensive crisis (severe high blood pressure)

§  Nephrotic Syndrome - a condition marked by very high levels of protein in the urine (proteinuria), low levels of protein in the blood, swelling, especially around the eyes, feet and hands. This syndrome is caused by damage to the glomeruli (tiny blood vessels in the kidney that filter waste and excess water from the blood and send them to the bladder as urine).

§  Congestive heart failure in patients who have received prior treatment with anthracycline based chemotherapy, or radiation therapy to the chest wall.

5.     Erbitux

a.      Common side effects occurring in greater than 30% of the people who take it

§  Rash (acne-like)

§  Generalized weakness, malaise

§  Fever

b.      Less common side effects occurring in about 10-29% of the people who take it

§  Nausea and vomiting

§  Diarrhea

§  Constipation

§  Poor appetite

§  Headache

§  Abdominal pain

§  Nail disorder - inflammation of the skin surrounding a fingernail or toenail

§  Mouth sores

§  Swelling

§  Difficulty sleeping

§  Itching

§  Low red blood cell count (Anemia)

§  Cough

If you notice, nausea, diarrhea or constipation and generally feeling like crap in the stomach and  bowels area, are the most common and likely problems. That is because we are trying to treat colon cancer (which has spread to the liver) so most of the target areas for the drugs they choose are fast growing cells in the digestive tract (from mouth to butt if you will).  So it is logical to expect that this is the area where I could experience most of my side effects. And based on my experiences the first time, I expect to feel nauseous most of the time with bowel movement problems (either too many or too few) most of the time and generally feeling run down and crappy ALL the time. But its not anything I can't handle and  I have things to help in all those areas so I will get through it.

So there you have it…this is the outlook for the next 6 months or so. If you want to learn more about these drugs and what they can do for you or TO you there are a lot of sites out there but one that I like is

www.chemorders.com. Just do a search for any of these drugs or for colon cancer in general and you will get a ton of information

Peace!

John