October's gone - bring on November

Remember...walking in the sand......seems like not that long ago but the month
of October was a busy month and lots of exciting and different things have
come and gone since we walked in the sand last.

First of all, I reached the next level of insight as I turned 60 years
old in early October. Don't really notice any new aches, pains or problems
though so I guess that's a good thing. The neuropathy is better and really
only notice it when trying to carry something like an ice cube from the
freezer to the livingroom. Solution: bring the glass to the freezer! Maybe
I'm wiser since turning 60? At any rate, I'm still creative and have a
good imagination, in my humble opinion.

We also had Mother Nature play a trick (or treat?)on us before the Autumn Leaves
were even off the trees in the form of a snowy Nor'easter where some still
are without power after several inches to several feet of snow fell
in local areas. Hope you all have your power back on soon.

Lastly, I went through my series of cancer screenings and also got my
flu shot so I've been 'winterized' so to speak. If all goes well and the
good Lord willin' - - I'll finish my 3rd year of remission in January!!!

So, not to postpone anything coming up I'm going to sign off for now
and order a wall calendar (At-A-Glance) for 2012 because it will be here
before we know it. Thanks and blessings for your continued support!!!

It's June and 55 degrees F ???

It must be because the Bruins are still playing hockey and tonight is game 7 of the Stanley Cup Final Playoffs!

We've had a few stretches of hot and hazy weather, but it's nice to get a break from the heat every now and then. I can recall when I was starting chemo three years ago and the wicked heat we had. I used to wear long sleeves and cover with a blanket during my infusions. Those chemo meds
work well, but the side effects included neuropathy and feeling cold very easily.

At any rate, we're hoping for a Bruins victory tonight and then looking
at a warm summer season....eventually! For those of you who are going through chemo right now, may God bless you as He has blessed me!!!

Edited to add - The BRUINS won!

2011 - More Snow

Well, the holidays are behind us now and 2011 came in with a powerful
nor'easter on January 11th and 12th. Some of the weather people were calling it 'Thundersnow' - - we called it an old fashioned blizzard!

I have two years in remission now and have my next series of tests
and CT scan tentatively scheduled for the last week in April. Maybe
by then all of the snow will have melted ;)

I'm feeling pretty good for the most part but still a bit of lingering neuropathy is noted especially in the cold weather. It's mainly the fingertips and toes of my feet. Compared to what it was like while going through chemotherapy, this is very mild and just a nuisance.

I'm still taking my daily vitamins and D supplements and was doing pretty good as far as losing some weight until the holidays hit - - but now it's back to the excercises and treadmills and hoping to 'lighten up' a
bit and get back to following the glycemic index more faithfully.

The Dog Days of August

Well, this has certainly been one of the hottest and muggiest summers that I can remember. Here we go into August and after a short few days of cool dry weather, we're back in the hot, hazy and humid stuff for another stretch.

I'll be seeing my primary care doc this month for annual checkup and bloodwork and next month will be my next CEA blood test with my oncology group.

My only complaint is some numbness (neuropathy?) in right foot/toes and the arthritis in my back has spread to the thoracic spine joints. I'm also starting to notice some arthritis in knee and fingers. A day at a time and don't sweat the small things!

Midway through January 2010

Well, here we are midway through January with a little January thaw coming in by Monday. The Winter NAMM show has just ended in California and lots of new and exciting gear was showcased.

Things are going pretty good at this point...still some neuropathy in my feet, but all in all, much better than last year at this time.

I've now been cancer free for one whole year!

The Holiday Season

The seasons are changing again. We just had Thanksgiving and in only a few more weeks we'll be into the Christmas week, followed by New Year's and 2010.

Two Thousand Ten...sounds strange, but time does keep ticking and waits for nobody. It's a particuliarly memorable time for me because at this time last year I was entering my final month of chemotherapy.

Aside from some stubborn neuropathy in my feet, I'm doing well and will be going in for my next PET scan in April. Winter 'could' be over by then if we're lucky!

Season's Greetings!!!

November - 2009

With this first onset of somewhat colder weather, I'm noticing some neuropathy (numbness) in some of my toes on my right foot. I guess that it takes quite a while for all of the chemo meds to exit your system.

We went to another memorial service. This time it was my sister's brother-in-law. I sure hope that these occasions end for awhile soon.

Still disputing hospital bills that go back to when I had my surgery last year in June of 2008! Latest letter says the my healthplan had *revised* the amount they were to pay which leaves me with more of a co-pay. I've already paid $250 for this one bill. Oh well, it is what it is?

February

Well, here it is February and Spring will soon be here. I haven't posted since last month's post follow-up and just a quick update today.

The 3 things that are still causing me problems are neuropathy, fatigue and short-term memory loss. I find that I need to write things down more often. The neuropathy is better, but I do notice that it is a slow process and may take several more months to completely abate. General fatigue is touch and go. I have good days mostly, but some days I just end up falling asleep with naps or early at night.

I haven't been to a dentist since last January (2008), and I have a tooth that's bothering me, so I called my oncologist and he said it was fine to go for dental work. I called the dentist this morning and have an appointment for a cleaning and exam on Thursday (day after tomorrow). They insist on this before doing any other dental work. I'll bet my gums are going to bleed worse than usual. I'll blame the chemo!

Thanks for everyone's support and I'll update next month after my next follow-up when they flush the port, check bloodwork and I have my exam.

First Follow-Up Today

I just got home from my 1st chemo follow up and it went pretty good. My bloodcounts are better, but still on the low side.

I told my oncologist about the tightness in the chestport area, the ongoing neuropathy and my short term memory loss problems. He said it's typical for a chemo patient after finishing the folfox treatment of chemo.

The tingling in my fingers is still pretty bad, but he said it might take from six to nine months before that goes away, but it WILL go away! They flushed the implanted mediport with saline and heparin (both sides - dual port) with both needles at the same time!

If I play guitar for a few hours, I have to skip the next several days because of the neuropathy in my fingertips from bending strings, so I play keyboards :)

So, my next follow-up is in 2 months, March 24th, then I'll have another two months from then and next will be be CEA bloodtests, scans and colonoscopy. All in all, he said that I'm progressing very well :)

"Fighting Cancer is a lifelong deal"

The title above is a quote from another cancer fighter whose blog I've been following. You can see a link on the right side (Rotorhead's Cancer Blog).

Charles is a military chopper pilot and keeps an interesting blog.

It's been 2 1/2 weeks since my chemo ended. I'm still having a lot of neuropathy and tingling/numbness in my fingers and feet along with gasto-related issues. I have my first follow-up visit on January 21st.

We've been getting snowfall just about every weekend since the new year started. I'm starting to envy the people who are in warmer climates.

Anyway, I'll update after my follow-up visit and we'll see what the next steps of the journey will be.

The Final Day of Chemo

What a day! I was really anxious to finish up today and was up at 5:00am even though my appointment wasn't until 10:35am. My wife took some pictures of me with the needle in the port and pump that I'll probably use as a dartboard eventually!

We brought in a cake and card and the staff was great and cuddled me with hugs and kisses...it was an emotional experience! To finish on Christmas Eve is quite a way to finish.

The neuropathy is still kind of bad, but I can deal with it. I have my first follow up in a month for bloodwork and port flush and we'll see where this journey leads after that.

Merry Christmas to all and Happy New Year!!!

Off - Week

I'm watching the *time* a lot this week!

This is my final "off-week" and I have a LOT to get done before starting my final treatment week next Monday!

The tingling in my fingers (neuropathy) is pretty bad and even trying to button a shirt is harder than usual, but I was warned of this and will manage to get past it somehow. The nerve damage is giving me some gastro tract *issues* as well.


I participated in our worldwide virtual band's 3rd annual Christmas song collaboration. We dedicate this year's song to the troops overseas and others who haven't been home for a long, long time. "Please Come Home For Christmas"

http://soundclick.com/share?songid=7148733

One step at a time, that's the only way and it has worked so far. Happy Holidays!

Christmas Time

"Tis the season...I'm trying to keep a positive outlook, but I haven't done much shopping for Christmas gifts yet and next week is my 11th cycle of chemo. Stress and anxiety are kicking in.

Many have told me that the last two cycles can be the toughest with the cumulative side effects of the oxaliplatin mostly. It's also getting a lot colder and I'm already wearing layers to keep warm.

The neuropathy, fatigue and digestive tract "issues" seem to be the worst, as they have been since starting chemo. I can't feel the little "bumps" on the "f" and "j" keys, so typing is slow and I have to keep going back to correct things.

I'm also trying to add my guitar parts to an annual Christmas collaboration project that I've been doing for the past three years now. This year's song is "Please Come Home For Christmas" and is dedicated to the military troops overseas and to others who haven't been able to get home for a long time. I'll post a link to the song when it's finished.

November 1st and 2/3 through chemo !

It's been a long journey since my colonoscopy last May, 2008, but I can now see a light at the end of the tunnel.

There were a few bumps when I started my chemotherapy that involved having to have my implanted catheter port re-worked and a setback due to low white blood and platelet counts, but this past week, cycle 8 of 12, went about as well as can be expected.

The Oxaliplatin is the main contributor to the most significant side effects, the other chemo meds don't really give me much problems other than some mouth sores, body/skin rashes, headaches and general fatigue, along with the chemobrain or chemofog, which I'm told is similiar to the likes of a mild form of the symptoms of early Alzheimer's. The main thing is that these will all go away when my treatments end after the last week in December.

In life, you take a lot of things for granted until you find yourself not being able to do such everyday things as move around without a pump attached to you, drink a cold glass of water or soda, reach into a fridge without gloves, play a guitar without really "feeling" the strings and even typing on a keyboard can be more time consuming as the neuropathy gives you a numbness in your fingertips and you can't "feel" the bumps on the "F" and "J" keys, so you have to watch as you type and correct manually afterwards.

So, with only 4 cycles left to go of treatments, I do see the light getting a little brighter each day at the end of the tunnel and I look forward to the follow up CEA blood tests, the CT scans and PET scans, having this catheter-port removed and the final follow-up colonoscopy which will be an annual check for the rest of my life.

Again, thanks to all for your continued support and best wishes for the upcoming holidays!!!

I'm into my 8th cycle (2/3 of treatments)

I'm back into a regular routine with the full chemo regime. It's not a very comfortable feeling with the neuropathy and fatigue along with this post nasal drip, cough and the usual side effects and a few surprise ones. :(

My oncologist examined me and said that my lungs were clear and thought that the drip and cough might be allergy related. I tend to disagree with him, but after thinking about it, I suppose that it could be?

He said to continue to use the saline nasal spray and Delsym cough medicine and if I thought it would help, I could try Flonase, which is loaded with steroids...

"For best results, use FLONASE daily. Your nasal symptoms may begin to improve in as few as 12 hours. Maximum relief may take several days. Results may vary. If side effects occur, they are generally mild and may include headache, nosebleed, or sore throat. FLONASE is available by prescription only; ask your healthcare professional if FLONASE is right for you."

I chose to hold off because I DO think the cough and post nasal drip is getting better and want to try the saline spray and Delsym (which I only started with last Friday night) for a bit longer.

http://www.delsym.com/

In looking at the calendar today, it appears that if all goes well (and that's a big "IF") that I will finish my chemotherapy treatments the week of December 30th. :)

After that, there will be CEA blood tests and monitoring followed by scans. I'll be having my follow up colonoscopy shortly thereafter which will be an annual procedure. Thanks again for all of the well wishes and positive thoughts and prayers...they are working!

October 4th - 2008

I've reached the halfway point of my chemo treatments but this week has left me with a few more 'strange' side effects.

I continue to have a lot of nasal congestion and spitting up phlegm as well as some body sores and mouth sores which I'm treating with Tom's of Maine anti-cavity and drymouth mouthwash and Nystatin powder for the welts/sores.

I'm tolerating it as well as can be expected though and just take it one step at a time. I think that the remaining treatments are going to be a little bit harder on my system and I'm trying to prepare myself for the changes that come with the colder weather such as cold sensitivity (neuropathy).

It's such a strange experience going through chemotherapy. Between the chemobrain syndrome and the constant changes that I've been experiencing, I never know what to expect when I open my eyes.

On a side note, we stayed up and watched the Red Sox win the second game of the A.L. Division Series against the Angels last night and looking forward to game 3 at Fenway on Sunday night. Go Sox!

6th Cycle started (with modifications)

I arrived at the clinic and after having blood drawn, they took my temperature, blood pressure and had exam. I was running a slight fever of 99.5, if it is 100.5 I wouldn't have been able to start the cycle I was told.

I spoke with my oncologist and he suggested that we go ahead with the treatment, but he was going to not give me one of the meds that caused the neuropathy. He said that it would not prolong the treatments, as I've already got a good dose of the oxaliplatin running through my system from previous cycles.

Because of this, I didn't need the anti-nausea meds either :)

I asked him about a flu shot and he thought for a moment, then decided that it would be okay to get the vaccine today also. I have had a runny nose, sore throat and cough for the past couple of weeks, but it seems as if it peaked when I woke up this morning and I was worried that I wouldn't be able to get my tratment.

Everything worked out okay though and I get 14 more days to let the neuropathy subside. They hooked me up to the portable pump of 5-FU and I'll be back again tomorrow. I was also able to book my next cycle (my 7th) beginning October 14th.

Thoughts & Observations

First of all, my prayers are with a friend, a fellow musician/guitarist, who I've never met but has been a huge inspiration for me. I've been communicating with Rob for about four months now since my diagnosis. Today is his follow-up colonoscopy.

Rob, from the Detroit area, had a similiar diagnosis and went through the same treatment (Folfox) that I'm currently going through, but he also had radiation. He has now had his mediport removed and is cancer free and I'm hoping that he gets a good report today! This is the link to Rob's blog : (thanks again, Rob!)

http://rocamata.com/news.aspx

I'm starting my 6th cycle if all goes well. The "tingling" sensation (neuropathy) in my fingers is not subsiding as in the past. It seems that many of the side effects are a bit more intense than in previous weeks as well.

I know that the treatments have a cumulative effect and I expect that it's going to be a bit tougher to be comfortable from here on in. So far, there have been some tough stretches, but it's been tolerable for the most part.

The little things seem to be getting worse (i.e. headaches are bordering on migraine, the metallic taste of food and beverages are lingering longer, fatigue is more intense, nausea feeling is happening more often.)

When I do finish this next cycle, I will be halfway through my chemo treatment.

I can't stress enough to everyone that if you're due to get "the test" go and have it done. The prep for a colonoscopy is like having a cold beer compared to going through chemotherapy!

Finished 5th cycle today !

It has been a trying week, but today's treatment finishes my 5th cycle and I was able to go ahead and schedule my next cycle for the week of September 30th - October 3rd, 2008. After this next week of treatments, I will have half of my treatments completed.

I heard from one of the oncology nurses that a new anti-nausea patch has recently been approved by the FDA...

http://ap.google.com/article/ALeqM5jzTSB0ffFGHcV9CLa5kt8sTg3LGgD937BU4O0

There are always new meds, methods and treatments coming along to help those afflicted by this horrible disease.

All went pretty good today. The senna is helping with digestive issues more and the redness in my face is from the prednisone which is part of the anti-nausea IV that I currently get at the beginning of each cycle. They told me to keep on the B-Complex and Folic Acid and it would help with neuropathy, but won't take it away. I'm getting used to the routine and know to use gloves and dress in layers when necessary.

Chemo Side Effects

This is my off week to let the body 'recycle' and I'm finding that the side effects from last week's 4th cycle treatments are a bit more nastier and sticking around for a longer period.

The side effects that I'm experiencing are Neuropathy (cold sensitivity and tingling/numbness in fingertips), Constipation (laxatives aren't even helping much), Fatigue, Mouth Sores, Headaches, Bloody Noses, Skin Welts and an aching feeling all over. I have no fever or nausea though. I picked up some Vitamin B-Complex w/Folic Acid to try and help heal the immune system and I'm upping my fiber intake.

In the past, I've been able to tolerate cold drinks with ice and/or ice cream after about the fourth day when the treatments ended. This time, it's been four days and I'm having problems just reaching into the fridge.

I haven't had to take any of the zofran or comparazine (for nausea), so I think it's just the chemo meds coupled with the anti-nausea IV that I get? At any rate, I'll discuss with my oncologist when I go in next week.