Life after Chemo

Hi everyone

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

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

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

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

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

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

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

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

Peace and love to you all!

John and Carol

Post chemo update#2

Hi everyone

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

 

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

 

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

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

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

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

Peace and Love

John and Carol and Joey

Viewing pictures

Hi

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

Enjoy!

John and Carol and Pablo

A new addition to the family

Hi

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

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

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

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

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

Thanks and

Peace and Love to everyone!

John and Carol and “Pablo”

Post Chemo update

Hi

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

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

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

 

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

I hope everyone is healthy, happy and safe!

 

Peace and Love

John

Cool Picture

Hi

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

John

The road to recovery

Hi everyone,

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

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

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

 

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

 

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

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

Peace and Love

John

Week 12 update

Hi everyone,

I just wanted to give you all a quick update on my last week of chemo. Basically this past week has been just about what I expected. I have/had the typical chemo nausea, fatigue and general yuckiness. The extra week without chemo probably helped a little but really it was just about as bad as normal so I am not sure it really helped all that much.

Be that as it may, I was able to get out to dinner with some friends for a couple of hours last night (Friday) but it totally wore me out. Right now the goal is to build up my strength and get back to normal as soon as possible. I am counting on that being a slow but steady thing based on how it went last time. You would think it would go quicker but it just takes time. It is incredible what they do to the human body with these chemo drugs and its no wonder, I guess, that the body takes so long to recover. I expect it to take about 5-6 weeks and I will be using that time to rest, help out more at work where possible and get ready to return to work full time the week of April 19^th  Carol and I have a week on Sanibel Island in Florida booked for the week of April 10^th so that will be a great way to end this ordeal and get back to normal!!!

Right now I am being a bachelor because Carol is in New Orleans with her brother and niece. They are checking out Tulane as a possible college for the niece so Carol flew down to spend the weekend with them.

I hope she doesn’t come home with too many beads

Peace and  Love to all!

John

The final push

Hi folks,

Well the final treatment is just about here. On Friday I will get my last treatment of chemotherapy!!!  This week I am trying to get over the cold/flu that prevented me from getting treatment last Friday. Its just about gone, I don't have a fever and the congestion in the lungs is almost gone too. I have been taking a regimen of antibiotics for this and it seems to be working. Other than that, the biggest issue is just fatigue. I am very tired all the time and even the simplest stuff completely wipes me out. I don't have the stamina to work at all and I still have problems concentrating for more than a few minutes on anything. This is normal “chemo brain” or “chemo fog” and it will gradually go away after the treatments finish.

So, Friday is the big day. I will get a normal treatment and then the normal week of nausea, mouth sores, diarrhea, etc.  After that we start to build back up by eating right: lots of protein for the red blood cells, sleeping right to build up the rest of my white blood cells and platelets, and just getting better every day.

Based on my last experience with this it will take 4-6 weeks before I am back to normal and ready to work full time and live full time. This has been a long 6 months and I can't believe it is finally going to be over. Thank you all for your prayers and good thoughts, there is no doubt it helped us get through this again.

I will update this blog sometime next week after the treatment to let you all know how it went. Because I have been given this extra week between sessions (3 weeks instead of 2 weeks) I am hoping to sail right through the side effects and be feeling good sooner than normal. No matter what though its still THE LAST ONE and I can handle it!!

Talk to you all next week..

Peace and Love

John

Week 12--Delayed

Hi everyone,

Well we are going to have to delay the final treatment until next Friday. They took one look at me today at the chemo center and freaked out..The  nurse asked me why I was so pale and short of breath. I told her about the week we just had dealing with the infection in the lungs plus the elevated temperature (low grade fever they call it) She told me to sit down and took my temp and my blood pressure.  I have a temperature of 100 and my blood pressure was very elevated too
Although my blood work is fine, I am not fine. They said that if I got chemo today it would make me too sick since I was already sick to start with. I am disappointed because this just delays everything but I am also kind of relieved because I really feel like crap to start with and I can't imagine how sick I would feel next week. The doctor gave me some antibiotics for the lungs and we are going to watch that over the next week and see what it looks like next Friday.  I’m sure we will be fine by then.

So thanks for all the prayers, positive energy, good thoughts and other forms of good vibes that you sent my way. I am going to wrap them up, save them for a week and open them next Friday J

Just a minor setback…

Love and Peace

John

Today was a Fire Drill!

Today we got a chance to test the Carol and John Emergency Response Team. The issue was because I had a fever of 102.6 when I woke up this morning. After going back and forth around the all  important 101 marker, it shot up this morning. I  was also coughing really bad and hacking up flem too. After a call to the doctor they wanted to see me but first they wanted me to go get blood drawn and a chest XRAY before I saw the doctor. So we headed out to get the blood and XRAY (with no appointments either) and after about 2 hours we were out of there and over to the doctor’s office. We saw the nurse right away and the first thing she did was check my temp which was now a steady 98.6!!!!!

 

After lots of questions and poking and prodding they decided to go forward with the treatment on Friday. Because my temp had dropped he didn’t want to prescribe any antibiotics either. So after all that we walked out empty handed and with no fever!!!

What a morning….The good news is that this is not going to delay the final treatment and we are keeping our fingers crossed that nothing changes between now and then. My temp is holding at normal so that is all good. My blood work came back fine for a chemo treatment and the chest XRAY didn’t show anything bad (whew!!!) All things considered I am as healthy as I can be for Friday.

I’m not sure when I will update this again, it depends on how the treatment goes. Sometimes I am reasonably fine over the weekend and sometimes it hits me before I even leave the chemo room. Anyway rest assured that I will be back here as soon as I can.  Maybe they will give me a diploma or something for graduating this class?? I’m thinking that would be cool!

Peace and Love

On to Week #12

John

Bit of a scare

Hi

I had a bit of a scare today!! Carol has been working in the office for the last two weeks instead of from home and she has come home with a nasty cold. She is coughing, sneezing, and just spewing germs all over the place. Today I woke up feeling kind of like I had the flu and I took my temp. It was 100.6!! The problem here is that if it goes to 101 I have to go to the hospital. The reason for this is that the chemo has beaten off all of my white blood cells so I am unable to fight against infection. After all this time I really didn’t want to go to the hospital nor do I want to have to skip my treatment on Friday so  I am putting down as much over the counter medicine as I can and watching the temperature.

Right now its dropped to 98.8 so I am OK.

Let's keep our fingers crossed that it does not flare up on or before Friday. I doubt they would let me take a treatment if I had a fever.

That’s the latest update from here…we now resume our regularly scheduled programming J

Peace and Love

John

Getting ready for the LAST WEEK!

Hi folks,

Well week #11 is pretty much in the books.  It was a “normal” week in that the nausea and fatigue are very much there but tolerable with medication. The issues I am most concerned with now are diarrhea/vomiting. There is a constant battle in the belly right now and I go from painfully constipated to wanting to vomit to being on the toilet doing you know what J

My mouth is also a problem in that it continues to be a source of constant pain no matter what I eat or what I do. Food tastes terrible and it hurts to eat just about anything. The only good friends I have right now are ice cream sandwiches and coffee. For some reason these taste like they are supposed to and they don't hurt my mouth. Of course I do not question this because these are my favorite foods anyway J

 

I see my doctor on Thursday and we will discuss all this and draw blood. Assuming my numbers are ok we will be all set for Week #12 on Friday. I am not even going to try and describe how it feels to be looking at the end of this nightmare but suffice it to say I am relieved and ready to get back to normal. Normal is  going to take anywhere from the next 4-6 weeks depending on how fast I can build up my strength so I can work. Right now I can't do my job because of the fatigue, etc but I am going to do my chemo on Feb 26^th and then I will be sick the week off March 1^st. From there  it will just be a matter of getting fit enough to work. Somewhere in there, towards the end, Carol and I will spend a week at Sannibel Island looking for shells and just hanging out. That will be the reward for getting through this and it will also be a way to get better.

 

So off we go to the Final Week on Friday!!! Thank you all for your support and prayers and positive energy. Whatever you want to call it, I thank you for it!!!

Peace and Love to you all,

John

Week 11 update

Hi folks…(I am attaching a picture that Carol took of our front yard after the snow. We never get snow like this so it was kind of cool to see snow again!! And I think Carol’s picture is awesome!)

 

Well week #11 is in the books and we made a small adjustment to the dosage this week. We cut it back a bit because the doctor is concerned about the mouth sores and fissures on my hands. He felt like a small cut back would help out without comprising the treatment. He even asked me if I wanted to just cancel the last 2 treatments and be done with it. The problem is that they have no idea whether these treatments should be for 6 months or 5 months or even 7 months. It isn’t like they can point to a certain week and say “We killed some cancer cells this week” They just don't know what these treatments do in any particular week. All they have is the results of the drug trials which give them mortality rates based on a certain amount of treatments. But if you get to the end and you can't take anymore, they cannot tell you that this last treatment is necessary or even if it will do any good at all.

So I am left with the decision and this happened during my last treatment also. 99% of me wants to just throw in the towel and say “I’m done”!! But……the purpose of these treatments is to kill any cancer cells that might possibly have survived the surgery. What if there is one cell roaming around that these last 2 treatments would kill? I try to look ahead and I want to be able to say “If it does come back, it’s not because I didn’t do everything in my power to beat it.” It might even be kind of superstitious but to me, if the program is a 12 treatment program then I am getting my 12 treatments. I don't want to second guess myself down the road.

 

So I signed up for Week 11 and Week 12 but with a reduced dosage on the 5-FU which is causing all the mouth and skin problems. The good news is that I am feeling much better than I normally would on a Monday but it is still too early in the week to say how it will turn out. All I know is I feel sort of ok after a pretty rough weekend. Sat and Sun were bad but today..hey I will take it!!

Week 12 is Feb 26^th and then I am done and I can feel good about the fact that I didn’t cheat the program, I didn’t cop out and take the easy way out. I took my medicine and I did everything I was asked to do. So it’s out of my hands now (like it’s always been actually) and we will start a regimen of CT Scans every 6 months to watch and hope and pray that nothing comes back this time.

I will update the blog later this week and hopefully things will continue like they are today.

Peace and Love to all of you..we are almost done!!

John

Week 10 checking in

Hi everyone

Well here we go, heading into the final TWO sessions. First let’s look at Week 10 and how that is going. I think the best way to describe what is going on now is to say “Cumulative effects are showing up everywhere!”  What I mean by that is the normal stuff you have been hearing me talk about for 5 months is still happening of course. By this I mean the progression from getting the drug on a Friday => to being sick as a dog for 7 days=>to climbing back just in time to have a few days of relative normalness=> to getting the next treatment is still the scenario I am dealing with. But now there are added complications that I want to describe so I can give you the total picture.

What I am seeing now is what I call all the “weird stuff” that is associated with Chemotherapy starting to play out. Some examples of “weird stuff” include fissures in the mouth and throat, extreme  dryness of hands with fissures around the fingernails. The fingernails themselves are doing strange things. The top layer of some of my fingernails is peeling back, sort of like pulling sun burned skin but instead of a layer of skin you can peel back a thin layer of finger nail! More examples of weird stuff that I am dealing with include:

 

 

ü  Chemo Fog—I am unable to concentrate on anything for more than a few minutes at a time before I lose track of what is going on. Carol is getting real tired of telling me things 6 times and each time I have to tell her “Oh yeah, I kind of remember talking about that with you”.

ü  Dizziness—If I try to do too much work (read emails, talk on the phone, etc) I start to get dizzy. This is similar but different to Chemo Fog. This is a physical sensation of having no sense of balance and limited ability to walk and talk clearly

ü  Muscle pain and weakness—I have pains that start in various muscles in my body, mostly in the legs and arms. The chemo has left me unable to physically do anything without having this muscle pain. I am also very weak and can't lift or carry anything

ü  Hair loss—I have been looking for hair loss all during the first round of chemo and all during this round with no luck. Seriously, I was kind of hoping to go bald so I could see what it looked like!! Its not falling out in huge clumps or anything but it is “thinning” really quickly now. You can see my scalp all along the top and front of the head.  I’m going to have Carol cut my hair this week and we may end  up shaving it depending on how it looks

ü  My vocal cords are damaged—For those of you who I have spoken to, you can hear that my voice sounds like Mickey Mouse. The chemo has damaged cells in the voice box area and I can't talk for more than a minute before I start squeaking like Mickey. It is very annoying since a large part of what I do for my job is talk on the phone.

ü  Diarrhea—This probably does not count as “weird stuff” but it is not fun and it does affect me in that the diarrhea hurts and I am dealing with enough pain without this pain in the ass!

 

I am dealing with all this stuff and now that we are close to the end, these things are not going away during the off week. They are sticking around right through the off week and then they are front and center for the bad week. Since the bad week is primarily dealing with sickness and  nausea, these things take a back seat for awhile but they are there and they need to be dealt with before I can be 100% back to normal (and able to put a full day of work in)

I believe that the smartest thing for me to do is to start my 6 week disability plan the week after next. That would be from the week of Feb 22^nd  through the week of March 22^nd   

That would mean I would have 1 week of nausea from the last treatment then 5 weeks with no drugs. During this last 5 weeks I would get as much rest that I could with the goal being to eliminate the 6 Weird Things from my list above. I really believe that I need to take this time to fully recover or I will never get back to normal and could actually cause more problems.

 

So that is the plan and we will see how it goes. Hope all is well with everyone!

Peace and Love

John

Week 10 blood results

Hi

For those of you who like this sort of thing, here are the results of my blood tests just prior to Week 10’s dose. As you can see, I am way below normal for most of these but still good enough that we didn’t have to skip a week. The one area that is the most likely to cause them to skip a week is my platelet counts but they actually went slightly up since last time so, while very  low, they are still holding up enough to keep going.

All in all about what you would expect after 10 sessions of chemotherapy so no cause for alarm at all, just need to keep an eye on them

That’s it for now

Love and Peace

John

My "War on Cancer"

Hey everyone..just wanted to check in and let you know that I am raring to go for Week 10 tomorrow!! We have reached double digits and we only have 3 sessions to go. This past week has been pretty much as expected, nothing unusual going on. I have lots of pain in my mouth but I have medicine for that.  My fingers have developed several fissures, or cuts, that hurt like the dickens but Carol keeps them at bay with Neosporin at night. I am dealing with diarrhea also but that is handled with lots of Imodium AD. And there is the nausea which is always there but also handled by meds. Mentally I am fatigued and worn down but not much  you can do about that except hang in there and wait for it to get better after the 12^th session. So basically we are holding our own on all fronts.

 

I was thinking about the phrase “The War on Cancer” which is something you used to hear a lot more of than you do now. It used to be a pretty common phrase when people talked about cancer. I never really took the words personally but when I think about it, there really is a war going on here. I am being attacked on all sides, not only by the cancer cells but also by the chemotherapy itself. And while this opponent is powerful and tough to beat,  I do have weapons in my arsenal to fight back. I have medications for some side effects,  I have a tough fighter (Carol) helping me lead the battle, I have my own determination and faith, and I have my super secret weapon which is all of you and your prayers and support. Your support and prayers are an unbeatable force to be reckoned with and I want you all to know how much I appreciate your help.

This truly is “A war on cancer” and it gets scary when you bring those words down to the personal level where the war is for your life and winning is everything. But I “Refuse To Lose” this one!

So tomorrow we go to the battleground yet again for a major battle with the enemy and we will take our hits but we will not give up. All I can say is “Sorry cancer…this is one war that you do not win. You lose”

Peace and Love

John

Weekly update

Hi folks

Sorry for not updating recently but there really hasn’t been too much to tell. Week 9 is going pretty much exactly like Weeks 7 and 8. I was extremely sick and nauseous from Friday until today even with all the anti nausea medicine. I am sleeping over 12 hours a night and still feel completely exhausted. I can definitely tell that the cumulative dosages are staying longer and building up in my body. I would have to say that fatigue, disorientation and general “chemo fog” are actually the worst side effects right now. Besides the nausea, I have fissures on my finger tips and cuts in my mouth but all of that is manageable with ointments and special mouthwash. There is nothing you can do about the fatigue and the rest of it though and that is what kills you down the stretch.

 

With 3 sessions to go over the next 6 weeks it is going to be a limp to the finish line. One thing I am prepared for that caught me totally by surprise last time is recovery time. Last time I figured it would take 2 weeks for me to get back to full strength after the last dosage. In reality, I was not able to get back to full strength for over 2 months! So I am not expecting anything less this time which means missing some work and just relaxing until I am back to “normal”. It will be interesting to see if it is longer this time or not but I would be very surprised if I was anywhere near normal before around May. We’ll see how it goes but that is what I am gearing up for right now.

 

There really isn’t much else to tell you these days, our lives are completely on hold during this time. Carol has to pick up the slack for everything around the house so she is constantly on the go doing house stuff. I don't ever feel like doing anything out of the house so we really haven’t done much for fun either.  It can be a strain living like this day in and day out. Its hard on both of us but somehow we just put our minds to it and just do it, whatever it takes.

 

Our plan right now is to see how long it takes me to recover from the  last session and then head to a beach somewhere and just relax for a week but we can't even plan that until we see how these last few sessions go.

Anyway, we can see the light at the end of the tunnel and we are heading to the end of this so please keep us in your thoughts and prayers and we will get through this

Peace and Love,

John and Carol

Dolphins Feeding at our beach

Hi everyone,

I just wanted to share some amazing shots that Carol and I took yesterday after I got back from Chemo. We see them feeding once in awhile like this where they come way out of the water but we have never gotten these kinds of shots. I am including the best 3 for you to check out. They were feeding for about 20 minutes then they moved on. There are some black ones and some silver/gray ones. I don't know if these are 2 different kinds of dolphins or if they change color at certain ages. It was really amazing to get these shots because usually they aren’t out of the water far enough or long enough to snap the shot

Anyway, I hope you enjoy!

 

As for chemo…Week 9 is in the books, (and in me) so we only have 3 more sessions to go and I am determined to stick it out for the entire 12 sessions. I had thought about quitting somewhere between Week 8 and Week 12 if things got too bad, but now I am “all in” as they say in poker.

 

I am expecting this week to be about the same as the last 2 weeks so that means I will be sick and on the toilet from now until Wed or Thur of next week. The other thing that is going on now is the fingertips are developing cuts and bleeding. This is a normal side effect and Carol puts ointments on them and tapes them up with gauze. Right now its on 3 fingers so I kind of look the Mummy when she is done..but it works!

 

So I will check back in once I get through the worst of this week and we will be looking ahead to Week #10!!

Peace and Love

John

Week 9 Preview and CT Scan results

Hi everyone

The power of prayer is an amazing thing! I saw my oncologist today and we reviewed the results from my CT Scan on Monday and we have a clean bill of health!!! I get completely stressed out waiting for the results of these tests because these are the meetings where you first hear that you have “something” and that “something” can be, and usually is, cancer. Understandably I am gun shy about getting these results because twice in my life they have brought devastating news to us.

 

What made it even more stressful today was this: At the last CT Scan they thought they saw something in one of my lungs. I did not share this with anyone because it was very unclear what they were seeing and these doctors are very OVER cautious due to lawsuits, etc. My oncologist said it was probably nothing and gave it a 90% chance that it was nothing. Because it was pretty dubious, they decided to wait a few months and re-do the scan so they could compare. Because it was all so unlikely I did not share this with anyone.  You can imagine how we felt going into the office today, we were pretty freaked out. But the good news is that all is well in there and what they thought was something turns out to be nothing. Tonight Carol and I will get a very good nights sleep!

 

I want to thank all the Angels out there for your prayers and positive thoughts. It worked!

 

So now we are off to Week #9 tomorrow and I will go there with a smile on my face because  I know there is no cancer in me!! After that we have 3 sessions to go and then we are DONE!

I don't know if anyone is all that interested in blood tests but I am attaching a picture that shows what the basic blood test results “should be” and what my numbers were back in Sept and what they are today.

I don't know what all the different tests mean but you can figure out most of them (RBC=Red Blood Count; WBC=White Blood Count., etc) What is interesting is to see that some of them are quite low based on today’s test but they are still high enough for them to give me Week #9 without skipping a week or two. We will hope that these numbers stay high enough that we can finish this thing on schedule which is FEBRUARY 26, 2010. Mark your calendars, that is V for Victory Day. Or maybe its F for Freedom from Chemo Day. Whatever we call it , it’s the day that Carol and I can start  getting our lives back to normal and normal is looking very nice right now!

 

Peace and Love!!

Thank God for a clean CT Scan!

Thank YOU for all your prayers and positive thoughts!

 

John and Carol

Getting ready for Week 9!

Hi

Well we are heading into the final stretch now. We have 4 more sessions left with the next one on Friday, Jan 15^th.  Before that though, I have a CT Scan scheduled for tomorrow (Jan 11^th ). I will get the results of the scan on Thursday when I see the doctor so I will be a nervous wreck until then! Please keep us in your prayers this week, this scan is very important and we really need a clean result!

 

One thing that could cause a slight change in plans is how my blood tests come back. Before every chemo treatment they do a complete work up  because there are certain numbers that will cause them to skip a treatment. For example, if your white or red blood cells get below a certain level, they can't give you the chemo. So far my results have all been good enough but last time my platelet count was pretty low. If that goes lower then it is possible they would skip a week to give the body a chance to build back up. I really don't want to skip a week at this point, it only drags this thing out that much further. They will draw blood on Thursday when I see the doctor and then we will know on Friday morning what we are doing…..With only 4 sessions left I would rather plow ahead than skip a week and have to extend this into March.  I will update everyone about all this on Friday. By then I will have the CT Scan results and I will either be done with Week #9 or I will be skipping a week and getting a “break”.

Think positive thoughts and send them our way!!!!

Peace and Love,

John and Carol

Week 8 Update

Hi everyone

Well I think we got the dosage finally figured out. This time we went with a dosage in between the ¾ and the full and it seems to be right. I got my treatment on NY eve and felt good enough to have some friends over that night. The next couple of days were what I would expect..felt nauseous and dealing with some diarrhea now. On Sunday I even felt well enough to take a quick ride to the beach with Carol and took some pictures of the shore birds (attached). It was very cold but we bundled up and it was good to get out of the house!

Today I am feeling yucky again but nothing I can't handle so I am going to stay at this dosage for the last 4 treatments.

 

I have a big milestone coming up next Monday, Jan 11^th when I will get another CT Scan. These are very nerve wracking for me because this is where they would see anything bad going on inside me. Of course this is also where they give me the clean bill of health so I get very anxious going into these things. Please keep us in your prayers this week and pray for a clean scan ok?

Let's start the new year with some good news!!!

Love and Peace!

John and Carol