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