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

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 25^th 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

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  

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

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?

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

Getting a Chemo Port next week

Hi

Before I can start the chemotherapy next Friday I need to go in and have a port put in. This is a picture of my port from the last round of Chemo.
(I saved it after they removed it)

The doctor will insert this device just under the skin either high up on my chest or near my bicep in my arm. The long tube goes directly into a vein and the round part sits just under the skin

That way when they need to dump chemicals into my blood they just stick the needle into the round bubble that is just under the skin and because the skin is real tight around that bubble, you don't even feel the needle. Then they tape it down and they can put drugs in OR take blood out without having to stick needles directly into your veins.

 

It really works great and saves a lot of pain and hassle. Last time I had mine high up on the chest so this time I might try the arm but I am not sure yet. I go in on Wed at 6AM and this is done under anesthesia. They will do the procedure around 8AM. Then after I wake up I can go head home soon after that. It will probably be 1-2 PM before I get out of there.

 

So that is how the port works….next time I will be talking about the chemicals they are going to use and what side effects I might be dealing with from each of them.

Peace and love…

John

Double Nickels

On Tuesday of this week I celebrated my 55^th birthday or “Double Nickels” as I like to call it. I have been waiting for this birthday for a very long time because it is the age where restaurants start giving the senior citizen discount! I have been bugging Carol for 10 years now to take me to a Denny’s as soon as I hit the double nickels so I can get one of their breakfasts at a discount!!

There aren’t any Denny’s real close to here but Carol will make sure I satisfy my lifelong dream. In the meantime she took me out to dinner with John and Melanie and I am attaching some pictures from dinner. We had a blast!

Peace…

John

 

What are the odds?

When you have cancer, the doctors will only talk about your odds of being alive "5 years from now". That is the milestone that they base all of their tests on and that is the basis for how they talk about your survival situation.
When I was first diagnosed with colon cancer in 2005 they told me that my odds of being alive 5 years from then was 80%. Those are good odds and it looks like I will make it since the 5 years is only about 3 months from now :)

So what are my odds now that the cancer has metastasized to my liver? They are 50/50. In other words its a 50/50 chance that I will be alive in 5 years. Either the cancer will come back and overwhelm me or I will survive the 5 years.
So when I think about the future I have to adjust my thinking a little bit. I have to think in 5 year phases. I really think I will be alive 5 years from now. I believe that. I have no idea if the cancer will come back after that or not but I do not let myself think about that anymore. Now I just think about the time between today and 2014. Anything past that is not on my radar anymore which kind of makes life easier if you think about it.
I really feel like I have to focus my life on the present and not the future. For too long I have planned for retirement, worried about finances, thought about all the things you are supposed to think about to get ready for retirement.
Now I have to leave that all behind me (for now). I have to focus on today and tomorrow and not worry about next year. I have to get my life in order enough to survive today's challenges. If I am alive 15 years from now then I will be very happy to have problems. :) I will be happy to be alive, but I am not worried about it anymore.
In a way I have a lot less to worry about than you do. We are all going to die we just dont know when. Because of what I am going through I have been forced to throw away most of what I used to worry about because I might not be there. I have been forced to focus on today. I have been forced to think about my death. I have come to peace with that eventuality. It will happen when it happens but it no longer occupies too much of my time. I can't give up any of my precious time to worry about that anymore.
In a way I am more free now than I was before this diagnoses. In a way I am looking forward to starting the chemo next week, because I WANT to get it over with. I WANT to get past this and live the next 5 years of my life. I WILL get past this.
Peace and love to all...

The Chemo Plan

I talked to my oncologist and he is recommending a chemo plan of the following drugs:
5FU (Which I took last time)
Leucavorin (Which I took last time)
CPT11
Either Erbitux or Avastin (This depends on a test they need to run on the tumor they removed)

The program is 4 hours on Friday in the clinic and then I go home with a pump for 48 hours (Sat and Sun). Then I am off for a week then I repeat this for 24 weeks (12 sessions of chemo and 12 off weeks)
I will be done mid March if I go the whole 24 weeks...but more on that later.

Besides the normal side effects of constipation, diarrhea, nausea, general weakness and feeling like crap, the Erbitux also has a weird side effect. If we go with that you usually get an acne like rash on your face, neck, scalp and chest that can be painful. You can use ointments, etc on it but you can't shave. It is supposed to be painful but it is supposed to go away sometime after you stop using the drug.

The way I am approaching the chemo this time is slightly different than last time. When I went through the program the first time, I tried to do everything they told me to do exactly right and I told myself that I had to do the whole 6 months because I was afraid that I would be "tempting fate" by not doing everything and I was afraid I would feel like I blew it if the cancer came back. So even though I got sick as a dog towards the end and even though I started having weird side effects, I stuck through the whole 6 months.
Well guess what? I did everything they told me to do, no questions asked and the cancer still came back AND by the way I also have a permanent side effect that is seriously affects my quality of life (neuropathy)

So this time, I will take the drugs they say to take but I will be watching for side effects. They say this acne is not supposed to be permanent but they also said that about the neuropathy and its now permanent. If I feel that one or more of the drugs is seriously impacting me in a negative way, I will discontinue that drug. If I get 4 months into the program and I just don't think I can take any more I am going to stop. This time I am in charge of my treatment, not the doctors. This may sound arrogant but it really isn't so please don't think that!
What I have learned is that every cancer is different and everyone reacts differently to the treatment so you HAVE to be in control of your program because the doctor does not really know for sure what is going to happen to you and they cannot predict the results. They have no way of knowing what happens between month 5 and month 6. All they know is that the FDA approved 6 month treatments based on some trial somewhere. So I need to listen to my body and I need to decide when its best for me to stop
I am in charge this time!!

A litte background on me

I was diagnosed with Stage 3 Colon Cancer in April of 2005. It had spread to 2 lymph nodes but had not gotten to any other organs. After a colon re-section and 6 months of chemotherapy I was back to "normal"
Although I was clean from cancer, the chemotherapy left me with a very painful condition called peripheral neuropathy. This was caused by one of the drugs I took (oxaliplatin). In the majority of cases this condition goes away after you stop the chemo but it did not go away for me.

From 2005 to now I was getting regular CT Scans and colonoscopies to make sure the cancer did not come back. After 4 years my odds were very good and I was pronounced completely in remission.

This changed when they found a spot on my liver in July of 2009 which tested positive for cancer after a biopsy. On Aug 17th I went into the hospital and had the cancer removed by Dr Harris. He was 100% confident that he got all of the cancer.
Now I will need to see my oncologist, Dr Anagnost on Sept 10th to go over what chemotherapy he wants me to do. He has already said it will be a 6 month plan but I don't have any details yet. I did tell him that I would NOT take any drugs that could possibly affect my neuropathy.
I will update this blog after I see Dr. Anagnost on Sept 10th