Last Post of the Year. . .

Well, Campers, the year rapidly draws to a close with some good news.  My trip to Moffitt today was a good one as I have been cleared to start eating pureed foods again.  Elaine made my day by preparing some delicious mashed cauliflower like only she can do it.  And my recent tiredness is not due to thyroid problems or anything like that but most likely to the fact that I’ve been pushing myself to my limits with the holidays and all the company.  That’s a good kind of tired!!

 On a down note, Liz, Adrienne, Eric, and Amelia left today.  My son Joey went back to Atlanta on Sunday so the house is back to just Elaine and me.  I welcome the chance to rest but miss everyone already, especially my soon to be 5-month old granddaughter Amelia who certainly carved her own special corner in my heart.  (No offense meant to you older kids – I miss you all, too!) 

 I’ll be sleeping tomorrow night when the new year arrives, but we will be having some friends over for trivia night.  Party will end at 11 as Elaine has to go to work at 6:30 AM on New Year’s Day and I just can’t last that long!!

 As I’ve remarked on these pages many times, having cancer has been an amazing life changing event.  I’m slowly recovering though it will take time.  But, eventually, I will return to work for a while.  But there will be some things that will never be the same.  Eventually, I’ll be able to eat a wider variety of foods, but there may well be some things I will never be able to eat again.  My voice will probably never return to its pre-cancerous days.  My hearing is degraded and I will have to be tested for hearing aids.  And I’ll be treating the lymphedema in my neck for the foreseeable future, which means taping my neck and most likely sleeping with a compression mask.  But, I’m still lucky – I’m still here waking up on the green side of the grass.  And that, my friends, makes it all worthwhile.

 Happy New Year to one and all!!!

 Peace and love to all!!

Joe

 

 

A Christmas to Remember. . .

Well, Campers, this has largely been a year to forget for me, but it was redeemed by a Christmas to remember.  All of my children and grandchildren were in town (some still here!), so it was perfect.  I probably overdid the activity for my weakened state, but I have all of January to recover. . .

As far as that goes, recovery remains slow.  I have been off pain killers for 3 – 4 weeks now, so that is a good thing.  And the pain when I swallow is mostly gone.  The remaining problem is that my throat is still partially blocked with mucous and I still can’t eat anything solid.  I’ve been able to drink a couple of my boxes of Boost VHC, but after about two of them, my throat gets, for want of a better term, ‘gummy’, so I am still pretty much limited to eating through the feeding tube.   Sort of made Christmas time dinners very frustrating as I was surrounded by people eating all sorts of delicious things, but, as I’ve said before, I will NOT spend January dieting like the rest of you poor slobs!!!!

And, I am still beastly tired most of the time.  I have some appointments at Moffitt tomorrow, so maybe I can find out if this is normal of if I need something else checked out.   We shall see. . .

At this point, I’m putting my earliest return to work possibility as February.  Hopefully that will work, but, again, we shall see. . .

Here’s hoping all of you had a joyous holiday season, whichever you celebrate, and have a joyous and wonderful 2015!!!!


Peace and love to all!!
Joe

Forgot to Mention. . .

In my haste to get the update below out, I forgot to mention some really good news!!!


For the month of December, we have company to celebrate the season.  My daughters Liz (from Milwaukee) and Adrienne (from Hawaii), my son-in-law Eric, and my granddaughter Amelia will be staying with us for most of December!  That will definitely keep me busy and keep me from going down the rat hole.  And then my son Joey will be down from Atlanta later this month.  Add the fact the my daughter Kate and grandkids Jennifer and David are here year-round, I will have much to be thankful for as they are the prizes that make this life great!!


Peace and Love!!
Joe

Long Overdue.. .

OK, Campers.  This update is long, long overdue. . .   No excuses, just haven't gotten around to doing it.


For the most past, I'm doing good.  Every day is a little better than the one before, yet there is still a long way to recovery.  One thing I've learned that they don't tell you is that once you've finished treatment, you're not even half way to recovery.  Well, let me clarify - that is to say if you've undergone radiation and/or chemo with known side effects.  I have recently been told by one of Sarasota's leading radiation oncologists that the two ends of the digestive tract are the worst for side effects from radiation, hence, my woes at the input side are not a surprise, only that they are severe and I an taking an unusually long time to heal.  But, I am healing.  No real feel for my return to the working world, only that I'd like it to be in January.


Today brought a new turn.  I have begun Occupational Therapy for lymphedema, which is a result of the lymph nodes in my neck being fried and blocked/not functioning.  As a result, my neck is swollen, which contributes to some of my swallowing difficulties.  The therapy consists of massage and taping of the neck to kind of hold the lymph nodes open and to encourage them to get to work.  I'll go back tomorrow (Friday) and then every day next week and we'll see where that brings us.  I figure it can't hurt.


Other than that, I just keep on keeping on. . .


Peace and love!!
Joe

Been a While. . .

Well, Campers, it's been a while since I did an update. . .   I'm mostly on the upswing as the pain medications I'm taking are doing their thing on the head and neck pains.  My energy level is returning and I've gotten back to riding the stationary bike some and walking around the neighborhood a little. 


My neck is still swollen and I do have a sore throat, especially when I swallow, and those are still under investigation by the fine folks at Moffitt.  But yesterday, I did receive some news that put be into a momentary tailspin.  Now, at the support group meetings, there is always talk about the 'new normal' and how life will never be quite the same after you've been through cancer and its attendant treatment.  And, as in most cases, we believe it on an intellectual level, but figure it really only applies to the others and we, our own selves, will be one of those who miraculously bounce back to full health.


Well, I had my warning shot across the bow yesterday following some more swallowing tests.  Quick aside - I am totally on a liquid diet these days, consisting primarily of Boost VHC through the feeding tube, cut with some protein powder.  I can drink thickened water and can take small pills, but no solid foods whatsoever.  And, the down side, there is no timetable as to when that might change.  There is a distinct possibility that I may never again be able to eat anything that has any 'hardness' to it such as steak and potatoes.  As you might imagine, the words 'Why me' did echo through my mind for a while. 


But, as I thought about it more and as Elaine and I spoke throughout the day, the worst, though a possibility, is not the most likely, and my time in the short term will best be spent doing my swallowing exercises with a vengeance and elevate my normal to as near 'normal' normal as possible.  After all, living a long life in good health and being able to do the things I enjoy is far more important than being able to nosh on a pork chop. After all, I did spend 2 - 3 years as a vegetarian in my 40's and live just fine through that.


But then, this morning, I had the revelation that will make all the rest of you jealous.  I will be going into the Thanksgiving/Christmas Holiday Season knowing I will not have to worry about gaining weight, nor will I have to spend January dieting.  Is life good, or what??!!!!!!!!!!


Peace ad love to all!!
Joe

RELIEF!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Well, Campers, I had my biopsy yesterday, and although the results are not yet 'official', Dr. Otto felt comfortable enough to pronounce the results as negative.


So, I remain cancer-free!!


As for what the swelling and neck pain are, we go back to the residual effects of radiation and the healing process.  The doctor says that I do have 'severe ulceration' of my tongue and that I'm just a slow healer.  Hey, someone has to fill out the ends of the bell curves.  There is still pain, and there still will be for a while longer, but somehow it's much more palatable as part of the cure than back to being part of the disease.


But these past few weeks did make me think about some to the topics raised at support group sessions, such as, if you had it to do over again, knowing what you do, would you elect to go through the treatment again.  And, for me, that answer did remain a resounding 'yes' throughout.  I truly love life and will do whatever is necessary to prolong it.


As for the immediate future, I still have no idea when I'll be physically ready to go back to work  As ling as there is some pain and I am taking oxycontin and morphine sulfite, I can't feel confident driving to Lakewood Ranch.  And, I still usually need a nap during the day.  Again, we shall see what we shall see!!


Peace and love to all!!
Joe

The Searech Begins Anew. . .

We, Campers, I go back to Moffitt tomorrow, Thursday, October 30, for a biopsy on whatever is going on in my throat.  My neck is drastically swollen and I can only swallow with pain, and pretty much only water.  I am actually glad to have the feeding tube back. . .


But, It's a bit of a mystery at this point.  To address the elephant in the room (the elephant of surprise??), it is indeed possible that the disease is back.  I'm not sure if it would be on my tongue, in lymph nodes, or who knows where??  Or, it could be something else that is not cancerous.  That is what my body is telling me, but it tends to be an optimist.  But, we'll know better in a few days.  If it is cancer again, at least I know the drill, only I'm sure there will be new wrinkles.  If not, there will me new surprises!!!


As I keep saying, we shall see what we shall see!!


Peace and love to all!!
Joe

Back to rhe Drawing Board. . .

Well, Campers, what did the guy that invented the drawing board go back to??


I am back to the feeding tube exclusively right now, and any attempt to ingest anything by mouth but a little bit of cold water doesn't work.  And, the swelling of my throat is getting worse. . .


So, I will be going back up to Moffitt on Thursday for a consultation with my oncological surgeon which could lead to a biopsy, or who knows what. . .  But, whatever it is, I go through with it and we beat the reaper again and tweak his nose just for kicks!!


Peace and love to all!!!
Joe

The Tube Dude Rides Again!!!

OK, Campers.  My new feeding tube is now in place and, beginning tomorrow, I will be downing Boost VHC like there's no tomorrow.  Amazing how your perspective changes when you go three days without eating, or, in the case of a liquid supplement diet, three days without sustenance.


There will also be a home health care nurse here to start me on an all-day IV to replenish lost fluids.


As to the cause of my swallowing problems, still unknown at this point. I will be talking to the folks at Moffitt tomorrow to get the results of the CT Scan that they did yesterday. 


Elaine and I talked way back at the beginning of this ordeal, agreeing that there would be some complications along the way.  It's tough being right all the time!!!


Peace and love to all!!
Joe

Just When You Thought It Was Safe. . .

Well, Campers, recovery has taken a twist. 


For a couple of weeks, I have had some pain where nerves that had been damaged during radiation have begun to heal and regenerate with a vengeance.  Then, those pains were joined by a sore throat.  Then, a week or so ago, I began to develop difficulties swallowing till it hit the point that I can no longer eat anything, including my Boost VHC.  I can marginally drink, but it is also with pain.


So, today, Elaine and I were at Moffitt for a look-see.  The did a CT Scan with will hopefully yield some clues as to what's going on.  We'll find that out tomorrow.


In the meantime, until my throat can be fixed, I go back tomorrow to have a new feeding tube installed.  Oh, well. . .  But, it's the only solution as I have not eaten for two days and will not eat for two more. . .  They also gave me two hours of fluids to ward off dehydration and have scheduled home health care to have a nurse come to the house for five days to give me a quick IV each day for more fluid replenishment.


But, as I was in the waiting room waiting for the IV to be set up, I realized that as sore and miserable as I may be, I was the lucky one.  I was surrounded by people who are still fighting cancer;  my battle has already been won - now I'm working on the peace treaty for the rest of my life.


Peace and love to all!!
Joe

And Now for Some Good News!!

Well Campers, I realize it’s been a while since I send out an update/.  Nothing personal just I’ve been feeling pretty good and taking advantage of it.

I’m walking more and doing short drives around town solo.    A major, major step.  And by pulse rates is coming back in line (after being high) indicating a return to strength.

TV remains the vast wasteland that Newtown Minnow of the FCC called it those many years ago.  Fortunately, my interest in reading has been revved up as I am now able to focus again and have been reading up a storm including a handful of books by Connie Willis, some Carl Hiassen, and many others.  Lots of fun!!!!

Not sure about my definite return to work though it will be within the next few weeks.  I don’t want to wait too long but also don’t want to go back too early and trigger a relapse.  The worst of my fatigue seems to be passed but I don’t want to temp the fates.

I’ve been attending two different support group meetings at the Center for Building Hope and those have been a godsend.  Hopefully, none of you reading this will ever need their services, but if you do, I recommend them highly.

I’ve been entertaining company as I can and my friend Dave was down for a few days from SC last week and we toured the Ringling Circus Museum.  It’s the first time I’ve been there in about 30 years and it was a real blast!!!

Normalcy, or at least some form, looms on the horizon.  It’s not all a bed of roses as Robin Roberts said. “Everybody’s Got Something”.  What’s weird is that I’ve started having the same sore throat and headaches that I experienced a year ago when the disease was forming.  This time, it’s part of the healing process.  As the nerves that were damaged during radiation heal, the pain returns to let you know that they are working, I guess.  But, it’s controllable with oxycontin and ibuprofen.,  But, it’s only a matter of time. .  .

Finally, I want to thank all of you in my support network, legion as you are.  I have the greatest family and friends in the entire world, bar none.  For a kid from the sticks who beat cancer, I am truly blessed.

Peace and love to all!!!

Joe

Progress. . .

Well, Campers, yesterday was one more red-letter day in the parade of progress.  I got my feeding tube removed!!!  Life is good!!


I'm still limited as to what I can eat and will be until my next swallow test in December or so.  But, the cumbersomeness of dealing with the tube is history!!


I am continuing to go to support groups, which are wonderful, and along with what I learn from the doctors, my knowledge of the disease grows by leaps and bounds.  Some of what you learn is interesting, I must add.  I noticed that my neck has swelled up again and I'm experiencing an ear ache and sore throat.  I found out from the nurse practitioner that these are normal parts of the healing process.  After a while, the lymph nodes that were fried during radiation hit their max capacity and they retain fluid - hence the swollen neck.  The soreness is also bark of healing - the nerves that were fried by radiation are beginning to heal.  So, who'd have thunk that there would be pain in healing??  But it sure beats not healing, I suppose!!


And I got to thinking about how cancer does not necessarily define those of us who have had it, but it sure can shape the rest of our lives.  I found out yesterday that depending on how severe the radiation damage was to my throat, there may be things I cannot eat again without danger of aspiration.  The energy level may never come back totally.  And there are and will be other things, I'm sure.  Again, it beats not healing.


Peace and love!!
Joe

Thinking About the Next Steps. . .

Well, Campers, I don't seem to be able to attach pictures to my blog entries anymore, so just imagine my 'In your face' to cancer as a tattoo of the Rolling Stones Sticky Fingers tongue on my upper left arm.


Slowly but surely, I'm still on the mend.  I'm not as tired as I used to be, which is a good thing,   I still get tired, but not the weary-to-the-bone fatigue of a few weeks ago.  And I discontinued my blood pressure medication which has also eased the dizziness I had been feeling as my blood pressure has dropped severely since I lost about 30 pounds.


I'm still not sure about when I will be able to go back to work.  But I have been thinking beyond that.  I figure that I'll work a year or so and retire in my time, not when the disease tells me to.  And then, I want to move onto the next stage of my life which will entail volunteering at Hospice or a cancer center.  I want to share my experiences of the last ten years and I don't want anyone to go through what I went through without as much support as I can help give them.


But, I've learned that things aren't always that easy.  I've been going to more support group meetings, and will continue to do so.  These have been great as far as learning what to expect, sharing other folks' experiences, and learning that, in general, we've all been through the same wringer.  But, there's a wrinkle.  One of the groups includes people who aren't yet cured and may not be.  In other words, these could be the people I'll be dealing with at Hospice.  And, I had my first brush with 'survivor guilt'. 


Yes, I will be dealing with people that are not going to get better, and there will be some guilt involved.  So, my mission is to think about to cope with that.  I will be faced with that question of why was I the lucky one??  I realize that it seems weird that I would consider myself lucky, but comparatively, I am. 


It's not going to prevent me from doing what I eventually do, but it is something to consider.


Wearing out fast!!


Peace and love to all!!!
Joe

Continuing to Hold

Well, campers, I still have my feeding tube.  Seems that the doctors aren't as optimistic as I am about now longer needing it.  They want be to go through some more tests in early September and then make the decision.  I haven't used the darn fool thing in two and a half weeks, but I guess they're the ones making the big money. . .


Other than that, I'm feeling mostly good though I'm having spells of lightheadedness when I stand up.  It could be a result of a severe drop in my blood pressure since I've lost about 25 pounds.  I am on BP medication so my GP's advice is to cut to half a pill a day and keep monitoring.  If the top number remains below 100, she says to then stop the pills for a month.  So we shall see.


Other than that, my next follow-up appointment is in November.


I'll keep you posted!!


Peace and Love,
Joe

YES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Well, Campers, I beat the dread disease, cancer!!!!!!!

I had the PET scan this afternoon and the disease has been eradicated!!!!!

It’s like a weight that I didn’t realize I was carrying has been lifted.  The only disappointment was that they did not remove the feeding tube, but that could happen in two days, on Thursday.  I’m thinking that today’s verdict and the tube removal will really push me along the road to recovery on greased grooves.

I want to thank everybody who followed me on this journey, and I will keep posting for a while.  Looks like I’ll be doing quarterly trips to Moffitt for check-ups but the worst is over!!  Now, to get over the fatigue and life will truly be amazing.

Peace and love,

Joe

The 'Tale of the Tape'

Well, Campers, tomorrow is the ‘tale of the tape’, so to speak.

At 12:30, I will begin the PET scan that will tell if I am cured for now, or it the disease is lingering and more treatment is required.

I feel good about it.  I’m sure that the disease has been eradicated, but I let the doctors decide.

And after behaving for several months, my stupid insurance company, Aetna, decided to initially deny payment for the PET scan as their 'experts' determined that the procedure is not 'medically necessary'.  Fortunately, they changed their mind. . .

More to follow after the test results are revealed!!

Peace and love,

Joe

Red Letter Day

Hello, Campers!! A red letter day in the healing process.

I drove on the Interstate for the first time in months to do the 20+ mile round trip to get a haircut. The trip was incident free and after that I went to get my driver’s license renewed, which is becoming an ordeal in and of itself in Florida.

Other than getting beastly tired, it’s been a good day!!

Peace and love to all!!
Joe

Book Review!!

Well, Campers, I finished reading Robin Roberts' wonderful memoir on her adventures with cancer, 'Everybody's Got Something'.  I recommend it highly for absolutely everyone.



Granted, Robin travels in a more rarefied atmosphere than most of us, but she is still a person who went through two kinds of cancer treatment and kept her humanity and humility. 




If you have or have had cancer, you will find your words and thoughts quoted on practically every page.  If not, it provides some magnificent insights into what your friends and relatives with the disease went through.




All in all, it should be on everyone's reading list.




As for me, life if pretty good.  I'm still tired most of the time, but I'm definitely on the mend.  I still have a thick mucous build-up and can't eat solid food, but all will come in time.  I'm still mostly dependent on my 5 Boost VHC's daily for nourishment but am trying to eat soft foods (no chewing required) once or twice a day.  And, I'm drinking it by mouth and have not used my feeding tube for a week now.  I'm hoping that they can remove it at my next doctor appointment, which will be Tuesday, Auguest 19.  This will also be the day of my PET Scan which will tell us if the disease has been eradicated or if more treatment is required.  It's funny, but I have no anxiety about the upcoming test and all,  It's like I'm so sure that it's all gone that there's nothing to worry about.


Time will tell!!!


Peace and love!!
Joe

Blowing My Own Horn

Well, Campers, I was inspired today by someone else's real-life experience.


I was watching "The Chew" on ABC and Robin Roberts of "Good Morning America" was one of the guests.  For those of you who don't know her story, she was treated for breast cancer and, I believe, leukemia.  Among other things, she talked about her book that she wrote about her experiences with the disease.  Her main points were that everyone is fighting some demon, though not necessarily life-threatening, that no matter what it is, this too shall pass, and that she has slowed down since and enjoys life more. 




Another point she raised was that during chemo, she couldn't stand the smell of food but enjoyed watching cooking shows on TV.


The book sounds like a good read and I have ordered it.




She made me think.  Sometimes I'm letting myself get down. But, what really overshadows any discomfort I'm feeling is that I'm on the road to being a cancer survivor.  I have beat the disease and accomplished something that most (fortunately) don't ever have to do. 


It really pumped me up.  I found that I was not nearly as tired as I have been and was actually excited about getting better.


Maybe TV is not a total vast wasteland.


Peace and love,
Joe

Goin' Mobile. . .

Well, campers, a little more excitement today than I bargained for. . .  When I started my second feeding of the day through my feeding tube, the cap of the tube broke, meaning I could not seal the tube shut after feeding.  I called Elaine in a panic and she came up with the brilliant idea of clamping it shut with one of the clips we have around the house for keeping papers together, bags closed, etc.  That got me through the main crisis at which I point I called Moffitt Cancer Center for advice.  Next thing I knew, my daughter Kate was driving me up to Tampa to the center for repair work.  They fixed me up with a new cap, and all is well.  But I was certainly concerned as the doctors tell me I'll be using the tube for a while longer, although this is an impetus for working on weaning myself from the darn thing. 


On a happier note, my son Joey and his girlfriend Tabatha are in town from Atlanta for a few days and I ended up getting up and about a little more than I had been.  On Sunday, the kids, Elaine, and I went to Siesta Beach for sunset and the drum circle.  Walking to the beach through sand was definitely a good workout.  Monday was rest and recovery.  Tuesday, I soloed in the car for the first time in several months - about a 2 mile round trip to the gas station, ATM, and Publix.  Wednesday was Team Trivia evening, which gets me out of the house for about three hours, and then today, before the tube emergency run, I did a solo 10 mile round trip to downtown Sarasota to finalize Elaine's and my voter registrations for the upcoming primaries in August.


So, all in all, I'm still tired a lot and nap a lot, but am trying my best to work through it.


Peace and love to all!!
Joe

Let's Get a Litle More Upbeat. . .

OK, Campers. . .  It's been called to my attention from several fronts that my more recent entries have become somewhat more morose. . . .  I fear that was true and want to apologize and offer a few words of explanation.


First, let me digress. . .   My primary purposes in maintaining the blog were as a catharsis for myself and to keep as many people updated as possible without having to repeat the info too often.  And, I wanted to share my experiences with anyone who, the Heavens forbid, may find themselves or someone they are close to in a similar position.


And, like Fox News ;-), I wanted to keep my reporting fair and balanced.  I am by nature a positive person, but I knew there would be times I was down in the dumps, so to speak,.  Hell, even the bluebird of happiness has off days. . . 


Early on, I hit bouts of anxiety, previously recorded on these pages.  Once I identified it, I was able to deal with it.  (The wonders of Xanax.).  But in recent weeks, I was blindsided by anxiety's more sinister brother, depression.  That I did not see coming.  But I found myself getting impatient, tired, and often on edge.  Around the same time, I started feeling cancer-related fatigue, a very common phenomenon.  My case, however, was very profound.  What I have since learned is that the fatigue can be exacerbated by depression.  So, without realizing it, I was allowing myself to go down the rat hole. 


I went to my medical oncologist, who has given  me a prescription for an anti-depressant, which I have now taken for 3 - 4 days.  The fatigue is still with me to a lesser degree, but the emotional edginess is pretty much gone, that is, I have climbed out of the rat hole!!  The take-away for me on this learning experience is that if your feel something is wrong, it probably is.  Our bodies are constantly talking to us if we take the time to listen.


But, I'm not as exhausted and am a little more ambitious.  Like, it doesn't take every ounce of energy to merely stand up anymore.


But I want to thank everyone who noticed for their attention and the fact that you all care.  So, please, if you notice me heading for that rat hole again, call me out on it!!


Peace and Love,
Joe

Latest Doctor Visit

Well, Campers, I visited the doctor today and my suspicions were confirmed.  My progress is right where it should be, but I do have a profound case of cancer-related fatigue.  I was given a prescription that will hopefully alleviate the fatigue, which I will pick up tomorrow.  We shall see. . .


And once again, I find myself in a pensive mood.  I 've been looking back on my life, and asking if I would have done anything differently.  The answer is the same that I think we'd all give - 'Hell, Yes'.  Now, that is not to say that we wish we were someone else. I'm just thinking that any of us who are being honest with ourselves all  have something we would tweak, as no matter how exemplary a life we may have led, we all have some cross to burn.  The secret is recognizing it, doing what we can to make the best of it, and then doing everything we can to prevent making the same mistakes again.  For me, the one that comes to mind right now is this cancer thing.  I've read the contract over and over and I'm not finding anywhere that I signed on for this.. .  I guess it must be in the really fine print.. . .


But, for the most part, I am excessively happy with where I am in life, especially with the angel Elaine in it.  That alone is worth the price of admission!


I am reminded of my favorite line from Jimmy Buffett - 'Some of it's magic, some of it's tragic, but I've had a good life all the way.'


Peace and love to all!!
Joe

A Little Philosophy

Well, Campers, I'm feeling a little pensive today. . .


I'm also feeling very tired as I seem to be in the throes of cancer-related fatigue, a not uncommon phenomenon, I understand.  For the most part, the other manifestations of the disease are abating, I'm just zombie-tired.  I have a doctor's appointment on Tuesday, so hopefully there's something that can be done the ease the fatigue.  I know that a lot will be dependent upon my getting my sorry a$$ in gear and just pushing through the weariness.  Unfortunately, that's way easier said than done. . .


Which brings me to the rest of the story. . .  What I'm finding is that everyone who has cancer, has had it, or knows someone who has/had it has their story.  And no matter how the stories may be the same, they are also all different -  the disease affects everyone differently.


What I find interesting and consistent is that people who had 'milder' forms of the disease (no such thing, but I'll get to that later) are often apologetic when speaking to people who had a more severe variety.  And that is where I think they sell themselves short.  In my humble opinion, someone who has/had Stage 1 of the disease does not owe anyone of us who were Stage 4 any apologies.  As I tell them, the disease is still the disease and radiation and chemo are going to knock you on your tail feathers if you were treated for Stage 1 just as much as if you were treated for Stage 4.  Your body is being pumped full of poisons and chemicals that have the single purpose of killing everything in their path.   The theory being that the 'bad' cells will stay dead and the 'good' cells will come back.  I'm guessing that the regenerative process is what causes the massive fatigue as your body is trying to combat the poisons, a process that continues long after treatment is complete.


And, no matter what stage and how early the disease was diagnosed, this is the first time that most of us faced our own mortality.  And no matter how prepared you think you are, until you look the Grim Reaper eye to eye, your personal definition of fear is not complete.  Again, no matter how low the actual risk of death is for your form of the disease, you will at some point face the fear.  And in the back of your mind, you know that no matter how many times you beat the Reaper, he eventually wins. 


So, I guess what I'm saying is, at the risk of sounding like I'm patting my own self on the back, anyone who has lived through cancer and the treatment, deserves a pat on the back, no matter the severity of their disease or the ultimate outcome.  We've paid some dues.


Peace and love to one and all!!


Joe

Long Overdue Update

OK, Campers.  I apologize profusely for how remiss I have been in keeping this blog going.  Part of it is that there hasn't been much change except for the fact that I now seem to be tired all the time and allowed myself to go into a funk over that.


But I finally started going to a support group at the Center for Positive Hope and that was a really good thing.  I got to talk to a couple of guys in the same boat who assured me that the fatigue can last for a year or more.  So, the good news is that I'm no different from others in this situation.  The not as good news is that the fatigue can last for a year.  I'm not sure how that jives with day-to-day living and going to work, but we'll just give it a few more weeks and see what plays out.


And this past weekend, Fourth of July, was Elaine's family reunion in Venice, so I got to talk to a few of her relatives (sister-in-law and a couple of cousins) who are also in various degrees of recovery from various forms of cancer.  The one consistent thing was the fatigue.  So, I guess this is what I have to look forward to. . .


Anyway, I will work at keeping the blog updated on a more regular basis.


Peace and love to all!!
Joe

Still Holding. . .

OK, Campers. . .  I guess it's been a while since I provided an update.  Two reasons, I guess. . .  One, there really hasn't been too much change.  I'm improving slowly.  Every day is a little better, but so far no quantum leaps.  But, according to my doctors, I'm pretty much on schedule, so I guess I have to be more patient.


And, for the longest time, I've been beastly tired most of the time.  That, too, has been gradually improving.  Mostly the character of the weariness has changed.  At first, it seemed to stem from my body core - I pretty much always felt fatigued and lifeless.  I'm still tired a lot, but it's more of a 'conventional' tired, like after the Sandman makes his visit.


I'll try to be more timely and see if I can't also come up with some words of wisdom. . .  ;-)


Peace and love to all!!
Joe

The Day of Reckoning is Set

OK, Campers.  My appointment is now set for the PET Scan which will tell if my treatments have been successful in eradicating the disease.  I will have the scan on Tuesday, August 19.  Later that day, I will meet with Dr. Caudell, my radiation oncologist, to decode the results.  So, here's keeping my fingers crossed!!


I also had an appointment with the speech pathologist/swallowing specialists yesterday and found out that I have probably slowed down part of my recovery process by making some invalid assumptions.  I figured that one treatment was over and since I was swallowing OK, I could discontinue the swallowing exercises that I had been doing since before treatment began.  Wrong. . . .  I need to still be doing them to work on getting control of my tongue back.,  I just figured that it would be a matter of time, related to when the swelling of my tongue went away.  Oh, eventually, that latter route would have worked, but I can speed up the process by getting back on the exercise regimen.  In my feeble defense, for the first few weeks after treatment ended, I could barely stay awake so getting up the ambition to exercise, hell getting the ambition to do anything, was beyond my capacity.  Yeah, that's my story ad I'm sticking to it.


Hope all is well with all of you!!!


Peace and love to all!!
Joe

And Now for Something Completely Different. . .

OK, Campers.  After a four week routine of essentially watching TV by myself in the mornings, watching movies and other videos with friends in the afternoon, and somewhere along the line running an errand with whoever was here to drive me, I went totally of script today.  It's Saturday and Elaine is not working so I decided we could do something out of the ordinary.   And we did. . .  For no apparent reason other than it's close by, I decided that I wanted to play miniature golf.  So, we went to the local course and had a great time!!!  And I roughed it - no cart.  I walked the entire course.  ;-)  I must admit that I took a nice nap once we got home as the heat and effort did sap me a little more than I expected.


The healing progress continues.  Slow, but it's happening.  I can't get too excited when I notice a vast improvement  in the morning as there will often be a slight backslide the next morning.  But the net result is still a little better every day, and who could ask for more than that?


Peace and love to all!!
Joe

A Bit of a Surprise

Well, Campers, one more time my impatience is revealed.  I'm sitting here thinking that it's taking forever to feel any progress.  But yesterday, I had an appointment with Dr. Russell, my medical oncologist, who informed me that I'm probably about a week ahead of the norm as far as recovery goes.

Just goes to show you that sometimes having an opinion just isn't worth the effort.

Peace and love to all!!
Joe

Keepin' On Keepin' On

OK, Campers.  Week three of post-treatment recovery is in the books.  I'm getting a little better every day, though no miracles.  But, as I keep saying, that's my problem.  Patience never was one of my  virtues. 


What's funny is that the doctors and nurses have been wonderful in setting what should be my expectation level.  My dilemma is that I'm not real good at accepting that level.  C'est la vie. . .


But, when I look objectively, there has been vast improvement.  Like I told Elaine last night, it was only a week and a half or so that I was spewing mucous from every available orifice several times a day.  I don't mean to jinx myself (probably too late. . . ;-), but it has been about a week since Vesuvius erupted.  That alone is worth the price of admission.


Also to the good, I'm eating more 'real' food.  Okay, calling pudding real food is a stretch, but it's something other than a box of Boost VHC (Very High Calorie).  And some sort of breakfast grain cereal is in the mix, occasional pureed meat, and pureed vegetables.  Trying anything more solid than that is still out of the question as my tongue still swells and subsides of it's own volition and I really have no control over it.  Soon, soon, I know. . .  (There's that rare virtue again. . .) 


But the process continues and for that I am grateful!!


Peace and love to all!!!
Joe

I Never Saw It Coming

OK, Campers. I know that I sometimes bandy about the term 'life-changing events' and probably take liberties with what it actually entails. But today I've been thinking about those events which certainly do change the way we live but go a little bit deeper and actually change the core of who we are, of how we see our lives, and how we choose to live those lives from that point forward.

So far, I'm going to say I have experienced two such moments, and one of those is still in progress.  And, yes, both of then involve #$%@& cancer.  The first was 10 years ago when my son David was afflicted and passed on.  That was my first total eye-opener.  Yes, my life was inexorably changed, but the person that I had been also left this plane, leaving me, ultimately, as the best person I have ever been.  I began to value my family and friends more and became less mercenary.  Oh, I certainly care about my career and try to do my meager best, but it is not the focal point of my life. I'm a kinder, gentler person.  I'm more relaxed.  All in all, I'm healthier, happier, and feel good about damn near everything.  It's great being me.  And, anyone out there that doesn't feel that way about their own life ought to be asking why.

So, that brings us to the second moment.  Yeah, I thought I learned it all going though David's bout with the disease.  Boy, was I wrong. . .   ;-)

But, this round is still a work in progress.  I'm not sure where it will lead me and how I will be changed, though I know I will be.  It's sort of funny, but I know that the process has already begun but I still can't focus enough to determine how.  One thing is that I know I will continue to worship Elaine and will do everything I can for her, knowing it will never measure up to all she's done foe me during this long, strange trip.  It will really take a cataclysmic event to upset me.  I will reconsider my retirement plans, and will most likely move my date up a year or so, meaning sometime in 2015.  I will take every day as it comes, appreciating every day I wake up above the grass.  And, I know there will be others.

But then, every day is better than the day before.

Peace and love to all!!!
Joe

Nothing New But Feeling Better

No major breakthroughs today, though I think it is now safe to say that most of the pain in the back of my throat, which had been constant, is now almost gone.  My tongue is still sore swollen and useless, but one thing at a time!!

And I get a bonus this week.  Elaine is working the weekend, so she has today and tomorrow off.  So, I get to see her smiling face all day for the next two days!!!  Life is good!!

Peace and love to all!!
Joe

A Little Better Every Day

Well, Campers, progress continues, albeit slowly,  But, progress is progress and progress is good!

An interesting, but I guess pretty major, breakthrough is that, though I do not crave eating 'real' food, the thought of it no longer repulses me.  With Elaine's urging and help, I'm now eating it least 3 very soft food items per day - things that don't require chewing.  But swallowing works great with only a little bit of pain.  I'm still taking most of my 'food' through the tube (drinking has never been a problem), but I'm seeing the path open up.  Life is good.

No more to add right now. . .  Oh, my hair stylist, Tom, made a house call yesterday, so I was able to get a long overdue haircut and am looking fine. . . .  ;-)

Peace and love to all!!
Joe

Life and Death

OK, Campers. . .  We get a little serious today.

But before that, in a follow-up to yesterday's post, one of my eating dilemmas is on the way to being solved.  Elaine has taken the cat by the whiskers and said she will prepare enough semi-solid foods for me to do away with one Boost per day.  So far, so good - I was able to eat some scrambled eggs and oatmeal with no problems.  Life is good!!

But, to the topic at hand. . .  Ten years ago, when I went through my son David's ordeal, knowing he was terminal, I began to face my own mortality.  And, in my infinite hubris, thought I had it figured out.  I was not going to welcome death nor face it with open arms, but I felt that I could face it with no fears.

Fast forward to the present. . .  As I've said many times on these pages, when YOU are the afflicted one, everything changes.  Now, I was fortunate this time around in knowing within a couple of weeks of diagnosis that my survival chances are over 90%.  Up until then, I was basing things on the Internet, which but me at about 57%.  (Since that point, I have mostly avoided looking up anything online - there is some good information but also a lot of not so good stuff that can and will make you crazy.)  So, I really never spent a lot of time dwelling on preparing for the great beyond, but I did spend some time doing just that.  And, I found that whole 'death be not proud' horse hockey just that.  Frankly, I was scared you-know-what-less.  Now, I know that had my prognosis been less rosy, I would have come to grips.  As you've heard me say before, you don't know what you can handle until you have to, and then you surprise yourself.  But, fortunately for me, that is a different story for a different day.

But I have noticed many changes in how I see things.  I don't know if they will last, but we shall see.  I've never been a real fan of violence in any form, but my tolerance to violence on TV has really become lower.  There are movies that I've seen before that I know I cannot watch now, as they will deeply disturb me.  And I can't help but notice how many TV ads there are for disease, drugs, and cancer centers.  I am much more aware of death and violence in the news.  I am more aware of sports injuries.  Anything with the 'c' word catches my attention.  Things of that nature.  I suppose the easy solution is to stop watching the damn TV. . .

Anyway, bottom line, and I'm sure I'm tweaking something previously said by Woody Allen, contemplating you own death is not something you can do cavalierly and/or objectively.

Peace and love to all!!!
Joe

Week Two of Post-Treatment Draws to a Close

OK, Campers.  It is now Saturday, May 31, or the end of my second week without the treatment of fire and poison.  (Kudos to Susan Clark for that description. . .  ;-)  Progress is slow, but it is still progress, nonetheless.  As I still run to being zombie-tired on occasion, this missive will lapse into stream-of-consciousness, I'm sure.  For that, I apologize, and I'll do my meager best!

But there have been occasional bright spots.  This past Wednesday, for instance, I pretty much stayed awake the entire day, left the house for a quick errand with my friend Will, did all sorts of little things around the house, and watched two episodes of 'Brother Cadfael' with  Will.  That was the high point, and I've returned to feeling tired most of the day since then, though I can say that the pain is lessening by the day.  One more time, baby steps are what should be expected.

But I guess I have been having flashes of anxiety for some of the oddest reasons.  Since my throat still hurts, I have been limiting my 'food' intake to my 'formula' through my feeding tube.  I'm OK drinking and there are no problems swallowing, it;s just that it is still difficult to do.  But, I'm going to have to get interested in eating sometime soon.  But, I'm not sure when the best time would be, what I would want to eat, and whether or not I should cut back on how many boxes of the Boost I ingest.  Sort of a strange dilemma.  I'm getting better but don't quite know what to do next 'cause I'm off script.  There are no doctors telling me what to do every day.  And that's another part of the anxiety.  I want to talk with my medical oncologist or his nurse, but don't know what I want to ask.  (Remember other times when I said that my thoughts would not be rational?  Well, this is another of those times. . . .  ;-)  I do have my next appointment with him on June 10, and I'm sure I will have things figured out by then, quite possibly calling for advice somewhere along the line.  I guess the bottom line is, I'm also sort of surprised that it may take longer that I anticipated for rational thought to come back. . .  ;-)  We shall see, I suppose. . . .

Well, just wanted to let you all know I'm still out here.

Peace and love to all!!!!
Joe

The Wall of Victory!!

Keep those cards and letters coming!!

Just one more thought. . .   Way back when, I probably re-iterated something I learned when I went through this with David those ten years ago.  I've said, and keep telling people, that the actions of others will surprise you, and it goes both ways.  People that you never expected to hear from step up in ways you may have never imagined;  conversely, people you expect to be there are absent.

And, as is often the case, I find now that the truth is firmly somewhere in the middle.  Again, as has been the case, my current condition is mellowing my thinking.  What I'm learning is that cancer, or any life-threatening disease, in a family truly does change the way you see lots of things.  And, in many cases, I'm finding that even people who's thoughts and prayers are with you every step of the way will not talk about it, nor will they step up and offer well-wishes or to do something, not because they don't want to, but because it reminds them too much of their own memories, or their fears if they have not yet had first-hand experience.  To say it simply, your situation makes them uncomfortable, and like many of us in that situation, they shut down to you.  Now, I would bet that many of those folks would do anything you asked, if you asked.  But they will not take that first step.

And that is understandable.  I know, and others have noticed this too, that there have been cases that I have been introduced to folks that have lost a child or have one who has been afflicted with a potentially fatal condition.  I would typically make the offer that they can talk to me anytime.  In many cases, people thank me and then kind of move away on the Group W Bench as I have branded myself as a pariah,  Especially if their child is still alive.  And, after a while, I began to understand.  They don't know where I'm going to go.  They don't care to find out if my message is positive or not.  All they know is that my story didn't end well and that's not want they want to be talking about.  And I can appreciate that.  Like I say, this second go-round is filling in the learning process that began with David.  Hopefully, there will be no more of these dreaded and feared learning experiences

Peace and love to you all!!!!!
Joe

Moving Along

Well. Campers, don't you hate it when other people turn out to be right??  I had sort of been hoping that the doctors had been pessimistic when they told me that I would still be feeling the effects of radiation for the first two weeks after it ended.  I, of course, figured that was just a scare tactic and I would start making miraculous progress, in leaps and bounds, during that period.  Well, not so much, I fear. . .  Oh, I'm a little better each day, and that will do.  But. . . .


But I am healing.  Oh, I'm still tired a lot and have no idea when I'll feel safe driving.  My throat is still raw and very sore and I'm 'eating' practically everything through the feeding tube.  But, I am able to swallow liquids with no difficulty and little pain, so I don't think there will be any long-term problems along those lines.  So, all in all, I'm pretty happy.  Especially when I see all the ads for medical centers and what-not on daytime TV and all the news stories about the terrible things that people are going through.  As Elaine and pointed out, and I have mentioned in these pages, a year from now, this part of my life will be mostly unpleasant memories.  The year will end on a high note as we will be welcoming a new grandchild into the family and, hopefully, all the kids should be home for at least part of the holidays.  And since it's always about me, I'm looking forward to feeling better by then that I have in many, many months.


Peace and love to all!!
Joe

Given the Choice. . .

Once again, I want to thank everyone for their kind words, cards, and letters!!  And, yes, there have been those delightful articles of physical mail, delivered by a uniformed government employee.  There's still something special about opening those, no matter how old I am. . .


But, I have to admit that while I certainly appreciate the accolades, I am also humbled by them.  Yes, I think that I'm handling the situation with as much strength and grace as I can muster, but no more than any one of you all would if you had to.  And that's one thing we must all remember, to never sell ourselves short, but that that's a different story for a different day. . .    But as I first remember saying to people ten years ago, when my son David was going through his ordeal with this deadly disease, that we never know how much we can handle until we have to, at which point we are often astonished.  Neither then, nor now, do I recall getting a choice in the matter.  "Gee, Monty. . .  That car is really cool and that trip sounds way cool, but I'm going to go for the potentially fatal disease and its attendant pain and suffering behind door number three. . ." 


I will admit this freely - I am a major weenie and had I been given the choice, I would have definitely opted out. . .  But, since there was none, I will meekly submit and continue to cope to the best of my meager abilities.  And, believe me when I tell you this - I have no doubts that any one of you would step up to whatever vile situation you may find yourselves in.  But. . .  I'm going to be way, way happier if I never get the opportunity to prove that I was right about that.  In this case, ignorance IS bliss.


Peace and love to one and all!!!


Joe

I Have Glimpsed the Future. . .

Yes, Campers, I have seen my future, and it is delightful!!!!!


About 6 AM or so, I got up for a bit while Elaine prepared to go into work.  And I realized something very different.  But it just seems that the planets were properly aligned (as well as my pain killers all peaking at the same time) and I felt absolutely no pain and my throat was pretty much mucous-free.  It was nirvana. . .


Now, I didn't allow myself to get to excited, nor did I even tell Elaine about it till later 'cause I knew that it would just pass.  But, I had a few minutes reprieve and managed to focus my eye on the prize one more time.


BTW, I want to thank all of you out there for your kind words and comments.  Sometimes fan mail is all that keeps us cancer patients going!!


Peace and Love to All!!!
Joe

Managing Expectations. . .

OK, Campers. . .  Even though the subject implies a rant in business-speak, it will not be. . .


But, I have been made aware that there are parallels between the world of recovery from a dread disease and normal day to day life. . .  Yes, that is truly profound, but hear me out. . .


And it's one more instance of how much smarter Elaine is than me. . .  Anyway, as you know by now, my formal treatments are over and I'm into the process of recovering from both the disease and the treatments.  And, since I'm a rather impatient lad, I'm expecting the process to be quick.  Digressing, recovery from a disease is primarily regarded as a physical exercise, but the mental aspect is equally vital and, in some ways, even more important.  And, as Elaine has pointed out to me many times, I am not setting a reasonable expectation level.  So that is what I'm trying to work on these past few days.  I am making progress in recovery, but not the quantum leaps I had initially been hoping for.  So, I have learned to become quite happy with small steps.  For instance, ever since the radiation began, my mouth has been beastly dry.  A couple of days ago, I noticed that my mouth has not been as dry.  So, at first, I expected all the dryness to be gone by the next day, which was an unreasonable expectation, but I had it anyway, and, to the surprise of no one, was disappointed.  But, if I alter my level set to 'hmmm, my mouth is still dry, but not as dry as yesterday.  Let's hope that tomorrow's improvement comes close to that.'  Much better!!!  I feel a little better each day and I'm not fighting off disappointment and anxiety. 


A simple lesson, but a valuable one.


Peace and love to one and all!!!!!
Joe

Let Recovery Begin!

Well, Campers, it has been four days since the end of radiation and today was my first follow-up doctor appointment since then.  I have to admit that the recovery process will be longer and more arduous than I had imagined.  The past Saturday and Sunday were quite possibly the most miserable two days I have spent since treatment began.  But. . .  It sure beats not being cured.  It is now Tuesday evening, a little after 8 PM, and I must say I feel pretty good.  But, as Elaine pointed out, there will be bearable days and there will be not so bearable days.  The payoff is that the bearable days will begin to outnumber the not so bearable ones. 


My appointment today with Dr. Russell was most interesting and informational.  For instances, even though my body is not being fried daily, the effects of the radiation will continue to work for weeks, if not months.  And even though the plan for patients with my strain of the disease and treatment protocol is for three weeks of chemo, the norm is that most don't get the third treatment.  I was one of the 30% of 'over-achievers' who was deemed able to handle the third week.  I can claim no credit, I must say - I just assumed that the third treatment was a given.


And, for the most part, I'm pretty much right on schedule for where I should be along the recovery road.  It will be a long process and there is just no magic that will speed it up.  But, it sure beats any of those alternatives that do not include being cured!!!!  The PET Scan that will tell the tale will be scheduled for mid-August, or three months after the end of treatments - which makes sense since the treatments are still doing their thing for those extra weeks.


I'm getting tired and notice that I'm rambling.  I'll spare all of us and sign off here.


Peace and love to all!!!!
Joe

The Bell Tolls for Thee!!!

Well, Campers, on Friday, May 16, 2014, at about 9 AM, I got to ring the bell after the completion of my last radiation treatment!!  The object in my left had is the mask that they used to attach me to the table to hold me in place while the radiation was occurring.  And, yes, is was as comfortable as it looks. . .  ;-)

Thoughts??  I got a million and I've got nothin'.  Relief to be done, to move ahead, to explore the next level. In an interesting adaptation of Charles Dickens, the next few days of the process will be the best of times and the worst of times.  The worst of times in that this will truly be the lowest point - 35 radiation treatments and 3 weeks of chemo have been administered.  My body has taken on the full load of poisons that it can bear. And it doesn't realize yet that it's not going to get any more.  For the past few days, I've probably slept about 20 hours a day.  When I'm not asleep, I'm feeding and/or feeling nauseous.  BUT. . .  Somewhere in the next couple days, the old bod will realize that it's not got to be asked to ingest anymore vile substances and will begin the arduous process of healing and recovering.

Then, the waiting game begins. . .   Over the next few weeks and months, I will make periodic trips to Moffitt for check-ups and evaluation.  I'm not sure when yet, but somewhere out there will be another PET Scan.  That, my friends, will tell the tell the tale.  If medical science has performed the magic that I think is has, I will be pronounced to be clean, or in remission, or some such, and will start the five year journey required to be officially called a  'cancer survivor'.  Note that at this point, we're not even entertaining any other possibilities.

Given my habits of the past few days, I'd normally be asleep by now, so the rest of this will most likely meander. . .   But I want to share the stories of a couple of my fellow cancer patients.  There's Dan that just finished his third week of radiation for some sort of throat cancer.  He's only having radiation, but no chemo. I spoke to him for the first time the first week he was there and he was having the same anxieties as I had had.  So, he was the first person that I was in any way able to reassure that it will all work out.  And, I do believe he will make it through.  He's a really good person whose heart is in the right place.  And Dan is the one other patient I will keep in touch with.  He's a year or two older than I am and seems to be by himself.  Unfortunately, he lives in Lutz (substantially north of Sarasota) so there's really no way I can drive up to visit him as I don't know when I'm going to feel safe driving again.  But I will definitely find the time to call now and then..

Finally, life truly is a circle.  On Thursday, which was my last day of chemo fluid infusion, I met a guy from Englewood who was there with his seeming girlfriend/significant other. Again, a couple of years older than me, but then who in Englewood isn't??  (Local joke. . .)  Anyway, he was finishing his chemo infusion for his first week of chemo.  He has the exact same strain of the disease as me, with a difference being that he was also a smoker.  So, he has the same team of oncologists but he will be doing four chemo treatments instead of the three that I did.  He was a little bit scared, I could tell, and it was good to be able to share with him.  What's funny is that the doctors must be telling him the same things they told me, 'cause I would say something and his girlfriend would say something like;, 'See, that is what happens.'  It was kind of funny and reassuring at the same time.

Well, gang, I'm on borrowed time.  I'm hoping that this week turns things around and I have my first follow-up appointment on Tuesday.  I will share more then.

Peace and love to all!!
Joe

Ask Not for Whom the Bell Tolls. . .

Moffitt has a couple of quaint customs. . .  When you complete a phase of your treatment, you get to ring a big, old brass bell on you way of the department.  Well, today was my turn to ring the chemo bell!  It was fun and sounded good!!  And tomorrow, I not only get to ring the radiation bell, but will get an honest-to-goodness diploma, naming me as an official graduate of Moffitt's Radiation program.  And the best part of all that is that I will be DONE with the grueling parts of the treatment.  Now, as I keep saying, I have been assured that the effects of the treatment will linger for two more weeks before the healing begins.  And I'm ready for that 'cause the ultimate payoff is that the healing WILL begin!!!

Peace and love to all as I look forward to that final treatment tomorrow!!!
Joe

The Last Chemo!

OK, Campers!!!  So today ends the continued introduction of one poison into my body - I had my last actual chemo infusion, though I will have two more days of fluid replenishment on Wednesday and Thursday.   And only three more radiation treatments!!  The future's so bright, I have to wear shades. . . 


And this week, both of my oncologists informed me that this week WILL be the worst of them all,  The next two, following the end of formal treatment will still be bad, but this is the nadir.  I have to say that I cannot dispute them, but, as I knock on a simulated wood-like substance, it still hasn't knocked me on my tail feathers, as I figured it would.  Come close, but I still have enough left to fight back. . .


And, a few weeks ago, Elaine pointed out something that I can, likewise, not dispute.  And that is the fact that even though I am grappling with a life-threatening disease, I'm going to come out of it with my health eventually intact and a few unpleasant memories, but generally better off than a lot of other people we've been seeing in the last few weeks.  And that's just not cancer patients at Moffitt, but people on the streets in Sarasota, even in our own neighborhood.  These are the people that are NOT going to get better, or the best that they can expect is to live in in a degraded physical or mental state with a diminished quality of life.  These are people who are permanently crippled in some way, perhaps,  Or the saddest case is our neighbor Shel, who lives across the street from us.  He's probably a little younger than me and had been the picture of health.  About a year or so ago, we noticed he was acting erratically and that his wife was doing all the driving.  Well, it turns out, he developed some sort of early onset dementia.  He will never get better. 


Now, I'm saying that I will not have any lasting effects.  It's still too early to know that for certain, though it doesn't seem they will be major.  I will eventually be able to eat real food again.  My voice my never again sound the way it did in my 'prime' radio years,  and who knows what else?  All part of the grand adventure. . . 


And, like I also said before, I will come out of this with some unpleasant memories.  But those will be far outweighed by the lessons I've learned about myself, my family and friends, and, corny as it sounds. life in general.  And, I can say something that I said ten years ago, and for the second time in my life, truly mean it.  Once again, I will come out of a pretty vile situation as the best person I've ever been.  (Injection of levity from an old bumper sticker - 'Oh, no!  Not another learning experience!')


Time to rest up for tomorrow's adventures!


Peace and live to all!!!!!!
Joe

The Last Sprint Plus a PSA for Kicks

Well, tomorrow, Monday, begins the final week of treatment and will be the third multi-media extravaganza - that is to say, both radiation and chemo.  I'm definitely run-down by now, but can still make this final dash to the finish line.

In our society as it is, I'm probably pretty safe in saying that everyone reading this has been touched by cancer in some way.  Now for many, that may be knowing someone or knowing of someone who has/had the disease.  Mostly, we know of their plight second or third hand - our understanding that they are going through some bad stuff is generally in the abstract.  Most are never in the position of living the disease day to day, and all that entails.

BTW, I am not saying this in any judgmental fashion, but merely stating what I believe to be fact.  I truly hope that is the only way most of us are exposed.  The first time I was affected was 10 years ago when my son David had his ordeal, when I was 53 years old, so I had gotten pretty far along in life free of intimate knowledge of the disease.  And, of course, there's not a day that goes by that I still wish I was that naive 53-year old.  But, that's a different story for a different day,  There is no world of what should be, there is only what there is.

OK, you're asking, where is this drug and disease-addled crazy going with this one?  That, my friends, is the Public Service Announcement I promised in the title.  to re-iterate, I have been afflicted with squamous cell carcinoma of the tongue.  That is to say, I developed a rather large malignant tumor at the base of my tongue.  The cause of my brand of the disease is exposure to the HPV virus.  In laymen's terms, I have contracted an extreme STD.  The virus can remain dormant in our bodies for 10 - 12 years, or more.  So, since a lot has happened on my life during that period, I have not expended any effort in trying to trace the genesis of the disease, not will I ever.  The reality is it happened.  Now, it typically doesn't happen to guys.  In recent years, there have typically been fewer than 5,000 cases per year among American men.  That also leads to why it took several months for me to be diagnosed - it's not what the doctors were looking for.  They were looking for TMJ, or cluster headaches, or an abscess, or nerve damage, or . . .

But, getting back on point, recent statistics are that 5% of current cancers in Americans are a result of HPV.  So, these forms of the disease are preventable, or at least may be mitigated by early detection.  So, for yourselves and loved ones, no one knows your body like you do,  When it's talking to you, listen.  If something doesn't feel right, it probably isn't.  You're not being a weenie by going to a doctor and being the squeaky wheel.

And here's where I'm going to ruffle some feathers, but so be it.  I know that there are movements afoot now to eradicate all early childhood immunizations.  I also know that there are movements to have young girls immunized against HPV.  Now, I'm not going to pretend that I know anything at all about science and technology behind any of these.  What I do know is that I not only recommend that we have our daughters immunized against HPV, but our sons, too.  I know that I would never want to see any of my children or grandchildren, or any of your children and grandchildren, or any of the little boy who lives down the lane's children or grandchildren go though one day of what I'm going through.  If I can somehow prevent a single case of cancer from occurring, I will eventually die a happy man.

Peace and love to all!!
Joe

85.7% Complete

OK, Campers.  Nothing says victory like the scent of radiation in the air. . .  30 treatments down, a mere 5 left.  Monday will begin the final onslaught against the demon cancer.  Week 7.  The rest of the story.  The whole enchilada.  OK, you get the picture. . .

I am still knocking on wood as I say that I feel much better than I though I would by now.  Oh, there is still time, I know.  And there have been some slams into the wall.  Perhaps not 'Don Giovanni's Descent into Hell', but at least 'Don Giovanni's Descent into Heck'. . .

And I want to thank everyone one more time for the cards, calls, texts, comments, emails, and any other form of encouragement.  It means a lot to me, just knowing that the most fantastic support network a boy could ever want is out there whenever I need you.  Friends and family, you are the best!!!!

In a way, the weekends between treatment weeks are kind of funny.  I like the time away from Moffitt and the opportunity to rest, but there is also some anxiety and restlessness as it's a break in the treatments.  Now, I know that the radiation and chemo is always working and will continue to do so after the last formal treatment is over, but there is just some sort of validation that something is happening on the days I receive treatment.  As I said before on these pages, and will continue to do so, no doubt, I know I am not always rational right now.  And I'll boldly say that I have earned that right to be irrational right now, what with one potentially fatal disease and two varieties of poisons that I have willingly accepted, coursing through my veins. . .  ;-)

Well, I am going to continue to rest as the upcoming week will bring radiation every day, chemo on Tuesday, end fluid infusion/replenishment on Wednesday and Thursday.  I AM pumped!!!!

Peace and love to all!!!
Joe

Roughing It In Paradise

OK, Campers. . .  I have to take this opportunity to thank my wonderful wife Elaine for one of the many ways in which she humors me. . .

Since I began treatment, especially following chemo weeks, I will have spells in which the smells of food cooking makes me want to hurl.  Since her appetite and health are in perfect order,  it would be totally unreasonable to expect her to give up the foods that make me feel bad.  (And I really never know when I will be affected or what food(s) will be the trigger.)  So, for the most part, she has made the effort to clean the cooking pots as soon as she's done with them, pretty much meaning she is never eating anything hot.  But, she has come up with a solution that enables her to cook whatever she wants and to eat it in peace by taking our camp stove out onto the lanai and cooking out there.  If that's not true love, I don't know what is!!!!

Peace and love to all!!!!
Joe

Grunge Cancer Fighter Counts 'Em Down!!!

On the Eve of Week 6

Well, tomorrow begins radiation treatment week 6 of 7.  I'm tempted to say it's the homestretch, but I have been assured that the side effects of radiation linger for two weeks after the end of treatment, sort of a 'radiation hangover', I suppose.


And the treatment is beginning to take it's toll, as I do seem to be hitting a wall of sorts.  Oh, nothing heinously terrible (yet) but a marked downturn.  In the name of full disclosure, the rest of this paragraph is not for the squeamish.  But, I have become a mucous generating machine.  And, as excess anything is wont to do, it keeps fining new orifices to escape from.  In the immortal words of Forrest Gump, 'That's all I have to say about that'.


I've pretty much hit the point where I can no longer eat any solid food and the Boost VHC that I'm living on is just about thin enough to trigger aspiration.  So, I am still able to drink thickened liquids (thickened to nectar consistency) but have to take the Boost through the feeding tube.  But, this shall pass, and not soon enough.


And I'm wearing out a lot quicker these days.  But, the light is at the end of the tunnel.


Peace and love to all!!
Joe

71.4% There!!

OK, by the calendar, treatments are 5/7's of the way done.  That would be 5 weeks done with two to go or 25 treatments down, 10 to go!  In any case, it's the homestretch.


Of course, I'm being told that the first two weeks of recovery will be a carryover from the side effects of the treatment, but we'll burn that bridge when we come to it.  .


The best thing about this Friday is that I'm home and not checked into the hospital. . .


But, I AM fading fast. . .


Peace and love for now!!!!
Joe

Feeling Presidential

OK, since I got to spend this past weekend at the Presidential Suite at the Moffitt Hilton, I began noticing that one of the promised side effects of the radiation is making me resemble a former President.  Not the Camelot handsomeness of JFK.  Not the roguishness of Bill Clinton.  Not the ruggedness of Theodore Roosevelt.  Not the intellect of Woodrow Wilson.  None of those. . . .  No, instead, I get the turkey neck of Ronald Reagan. . . .


Yeah, as promised, the radiation has begun to give me a sunburn from the inside out, though it is totally focused in my neck.  The skin is very dry and red, and yes, I've developed the loose skin folds of a big, old Tom turkey.  Some people get all the luck. . .


But, other than that, I am still amazed that I feel as good as I do.  Of course, I'm still buzzed on steroids and antibiotics, but even at than, I'm pleased.  Of course, there are still two and a half weeks of treatment and the two week period after that that it will take for the side effects to flush out.  But each new day of relative comfort is not one of abject misery.  And that, my friends, is a good thing!!


Peace and love to all!!
Joe

Free At Last!!!!

OK, I've really been home since yesterday (Sunday) but have be pre-occupied with re-entry to home mode after two days in the Moffitt Hilton. . . 


But, while my hospitalization was not quite a weekend at a health spa, it did have a recuperative and regenerative effect.  It was where I had to be.  The final diagnoses were thrush, which is basically a yeast infection of the mouth, and, what got me incarcerated, was aspiration inflammation, or my lungs were full of gunk which had accumulated from several weeks of hampered swallowing ability and too much 'going down the wrong pipe'.


But, it's amazing what two days of being pumped with antibiotics and steroids will do.  So, my dreams of a college football career are probably dashed, but that's that, I suppose.  But my vital stats yesterday morning prior to release were the best they've been since the days when I was biking 100 miles a week.


It was really great to spend last night at home in my own bed, in my own house, with my dear sweet wife there with me.  Life truly is good!!  And for a guy with cancer, I really feel as good as I have in months.  I guess it's like the proverbial frog in the pot of slowly boiling water - you don't notice how your health is degenerating until it's happened.


And, this escapade also steeled my resolve to do all the right things needed to ensure a good outcome (such as doing all my exercises to retain my swallowing ability) and then some.  I'm also continuing to take care of my body and paying attention to my appearance, as ridiculous as that seems.  But one of my epiphanies this week was that having cancer is sort of like being in 'The Exorcist'.  It's a battle for who wants control of you body more - you or the disease.  And I know the disease won't respect it as much as I will.  So, I WIIL kick cancer in the fanny and will scorch the earth, taking no prisoners.


Back to the mundane, today's radiation treatment put me at the 60% mark - 21 of 35 complete.  So, once again, life is good!!!


Peace and love to all, and go forth remembering the way it was, savoring each and every second of the way it is, and always, always, always looking forward to the way it's gonna be 'cause every day is, in its own way, better than the day before.


Be back to you soon!!
Joe

Just When You Thought It Was Safe. . .

OK, as Hunter Thompson said, 'When the going gets weird, the weird get going.'

First, I apologize for the raggedness of the typing, but I'm typing on my iPad from a hospital room at Moffitt where I was admitted yesterday (Friday) morning.  Elaine had noticed that my temperature was high when I was getting my post-chemo fluid infusions and suggested that I ask them to take my temp on Friday after my radiation.  (They usually don't.). Sure enough, I was spiked at 102 and then got whisked away to be injected, inspected, detected, and selected for admission.  My oxygen levels were also low and my breathing ragged.  At this point, I'm doing better (won't know if it's good enough to go home for a bit yet).  Remember when our mothers told us not to eat or drink too fast or 'it would go down the wrong pipe'?  Well, it seems my disease has the same effect and my lungs may have filled with junk, causing the infection.  That is the hoped for prognosis, but hopefully, all will soon be revealed.  Until then, I have a whole new audience for my stale 'jokes'!

Every day you wake up on the right side of the grass is a good day.

Peace and love to all!
Joe

Second Chemo Teatment in the Books!

OK, the second round of chemo and follow-up hydration are complete. So, there's only one more week of chemo, which will coincide with the last week or radiation, that of May 12.


So far, so good, though if there will be any side effect action, it won't hit until the weekend.  Here's hoping!!!!


I'm pretty much tired all the time, sometimes bordering on 'zombie tired', as Elaine calls it.  There's always some degree of pain, though it remains manageable.    And I can tell that the tumor and lymph nodes are shrinking.  But equally important, the anxiety is abating and I'm sleeping much better.  After this, I can see the attractiveness of a cat's life, sleeping 20 hours a day, but then that's a different story for a different day. . .


Thank you all for your continued thoughts, prayers, and words of encouragement!!


Joe

OK, Campers!!!  I am now officially over the hump!!!  Radiation treatment 18 of 35 was performed today, and chemo session 2 of 3 was yesterday!!  The world is spinning on greased grooves and it's downhill from here. 

Oh, I'm weak, tired, in some pain, and totally goofy from all the drugs and isotopes, but above all, I'm happy.  (OK, some of the drugs may be contributing) and seeing the light at the end of the tunnel. 

No real words of wisdom today, as I desperately need a nap. . .  ;-)

Peace and love to one and all!!
Joe

Mystery Cancer Fighter Faces Chemo Round Two

OK, went to the mats with chemo again today, and so far, emerged victorious!!  No nausea or visible side effects, but then, I am claiming a fairly shallow victory as if there are any, they won't show up for a day or two since I'm pumped with two day's worth of anti-nausea drugs as well as the chemo its own self.  . . .


But, I'm feeling good about it.  Dr. Russell, my medical oncologist, said that the side effects form the chemo may not necessarily be any worse than the first time, which was entirely manageable.  His advice is that the bulk of side effects will come from the radiation.  And some are kind of humorous.  My beard now only grows on two very limited areas of my cheeks, and those very slowly.  And the hair on the back of my neck is falling out.  Couple that with the bald spot in the top of my head and I will be sporting the Roman tonsure stylish in the 7th Century.  Elaine has already referred to me as Friar Joe and is checking out brown robes in my size on Craigslist. . .


My throat is dry and raw and pretty much hurts all the time.  This will unfortunately progress, but they gave me good leads on pain management, so we'll se how that goes.  But the doctor also told us that even though my strain of the disease is highly curable, the treatment regimen is one of the toughest since it is comprised of both radiation and chemo.  I say, if you can't take the cure, then you better stay away from the disease.   This one is not meant for weenies!!!!!


Well, the day started with radiation at 8:30 AM and ended about 6:00 PM with chemo, so I am beat and signing off.


Peace and love to all!!!!
Joe

Embracing/Dreading Round Two of Chemo

So today I find myself torn and anxious.  On one hand, I'm looking forward to progressing with the next chemo treatment but am also more than a little scared as I know it will not go as uneventfully as the first week of chemo.  On one hand, I'm glad that all the doctors and nurses at Moffitt have been up front with me as with what to expect and how the effects will become progressively worse.  On the other, I almost wish they weren't so forthright as I'm almost expecting 'Don Juan's Descent into Hell'.  I know that the truth, as always, will lie somewhere in the middle.  And, I'll deal with it as it comes.




I'm also realizing that 10 years ago, I had absolutely no clue of what David was going through.  Oh, I was empathetic and was the best caregiver I could have possibly been.  But in no way could I have ever imagined the scary, dark place where he was living. 




Now, I know some of you are asking 'Where's the upbeat Joe that we all know who puts a happy spin on everything?'  Oh, he's still here, and I know that I'm going to come out of this OK and that Elaine's and my marriage will be even stronger.  I know that by the end of the year I will eating everything in sight and enjoying it.  The world WILL spin on greased grooves and in the immortal words of Bruce Springsteen, 'Someday we'll look back on this it and it will all seem funny.'




But it's also letting me get to know myself just a little bit better.  There is a darker side that I will learn how to live with.  And just like when I went through David's ordeal, I know I will come through this one as the best person I've ever been.  And my resolve to volunteer with Hospice is stronger than ever - I want to do everything in my power to prevent people from going through the Hell that is cancer alone. 


Peace and love to all!
Joe

Transition Week Awaits

OK, campers.  Week three of treatment wrapped up Friday with the 15th radiation treatment of 35 pending.  And, still, so far, so good.  I'm beastly tired most of the time and am starting to show more side effects.  My beard has pretty much stopped growing, my hair is thinning in the back, and my throat is pretty much raw and sore all the time.  But some good signs in that my throat passage seems to be opening up a little more each day.  I'm still on a mostly liquid with occasional mush (and milkshake!!!) diet and figure that will continue for at least another week before I actually try to chew something as my tongue is still way too outsized, swollen, and misshapen to depend in it to successfully transfer food from my teeth to the back of my mouth where it could be swallowed,  But, I am also diligently doing my swallowing exercises, so the swallow reflex is still working, albeit painfully. 


And I am still prone to anxiety.  I'm not wild about it but I'm taking the equivalent of two Xanax pills a day - two halves during the day and a full one at nighttime to help me sleep.  I find that it takes the edge off 'cause I can get easily agitated and head straight down the rabbit hole.  Even though my prognosis is good and my chances of recovery are over 90%, I'm still a little bit scared.  But, having a great support network really helps and I can't stress that enough if any of you ever find yourself in this position, heaven forbid.  I know I often talk about how my son David handled his bout the disease amazingly well.  And, I now know that was largely due to the fact that the house was always full of friends and love.
 
Having said that, the past few days have been good ones for me.  On Thursday, my daughter Adrienne and I spent her last day before she had to go back to Hawaii watching mindless sitcoms on TV.  Yesterday while Elaine was working, my friend Will cam over and we watched "The Fellowship of the Rings", extended version, and when Elaine came home, we watched more silly game shows and bad movies.  So, I'm connecting the dots and realizing that the time I'm spending with others, not focused on the disease, are the best thing for me.  Yes, I am that dense and really do learn that slowly!!!!!!!  ;-)


Anyway, if any of you out there locally have some time to spare and would like to give the hardcore support group a break, feel free to come on down and do a favor for a sick friend, and watch really bad TV. . .  ;-)  I'll supply the snacks and beverages.


As for the upcoming week, I'm taking the fact that it's Easter time and the season of rebirth as a good sign.  It will be the midpoint of treatment and the next wave of chemo.  I've been assured it will be much tougher than the first week was, but, hey, I'm much tougher now than I was then!


Peace and love to all!!
Joe