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

Week Three Begins

OK, campers, treatment week three has officially begun with radiation session 11 of 35, i.e., 24 to go.  The treatment was mostly uneventful, with one interesting sidelight.  My first anxiety attack was that I was going to suffocate in the radiation machine 'cause the mask I'm bound up in on the table was too tight and constricting.  Well it seems that during the past two treatments, I fell asleep in the machine.  I'm not saying it's become a non-event, but it seems my concern was not warranted. . .  ;-)


And I also had another pleasant experience after treatment.  I made a visit to an acupuncturist who was able to relieve some of the pain in my throat and to reduce the swelling of my tongue enough that I'm almost intelligible when I speak now.  Life is good!!!


Oh, and one more final humorous observation.  Before the treatments began, I was told that I should keep most of my hair, except for that on the back of my neck, which will most likely grow back.  But, I will probably lose my facial hair, which will most likely NOT grow back.  Well, this morning, when I went to take my shower, I noticed that shaving would not be necessary as there was no new growth.  Perhaps the cycle has begun - we shall see.


Peace and love to all!!!!
Joe

Week Two Wrap-Up

OK, campers, two weeks down!! (So far, one of my strangest quandaries is figuring out what to title each entry - a monumental decision, I must say. . . )


So, the first two weeks of radiation are over with five more to go.  Or 10 treatments complete with 25 left  And this last treatment was a milestone - I evolved from the sheer panic of fearing that I would find the mask too constrictive and would die of suffocation during treatment at the first session to nodding off on the table by the end of this last session.


And, as predicted about now, I'm beginning to experience the first side effects of radiation.  There is a blessing, however, in that the tumor may have started shrinking.  I'm noticing that my throat passage seems to be a little less blocked, swallowing is a little 'easier', and my breathing is a little freer.  Of course, as if often the case, blessings come with curses.  Well, 'curse' may be extreme so let's just call them 'discomforts'.  I say swallowing is 'easier' (quotes intended) as it is mechanically easier, but is more painful as the promised throat scarring and radiation pain seem to have arrived to some degree.  But, it hurt like hell when I swallowed for about 6 months before my diagnosis, so this is a pain with which I am somewhat familiar. 


And I'm not sure what combination of events finally fell into place, but I managed to get four solid hours of sleep last night (unfortunately, there were from 10 to midnight and 5 - 7 AM with periods of fitfulness and several sessions of '2048' on the iPad (thanks to Adrienne for introducing me to the game!) but after I was up and about for a while, I hit a couple hours where I could not stay awake.  And, it didn't matter what position I had assumed.  Go figure. . .


Finally, just one more 'learning experience'.  Now, I am not the ultimate authority here, but I have  had experience as a both caregiver to a cancer patient and as a 'caregetter' as a cancer patient.  Elaine is doing a unbelievably fantastic job as caregiver (I should be half as good a patient. . .  ;-) and we are both learning together as we are both new to these roles.  And, again, I know that everyone's situation is different.  But, now having said that and disclaimed it out the old wazoo, I'd like to share a few observations to those of you who are or may find themselves as caregivers. Mainly, the person you're caring for, and who is probably a close loved one you've know for years, mostly looks exactly the same as they did before the onset of the disease.  BUT THEY ARE NOT!!!!!  The person you're dealing with has been invaded by interlopers into their body.  First, of course, is the disease.  Then, there are the chemicals and poisons that have been introduced into their systems which are coursing through their veins like demons.  They are NOT always going to be rational.  They WILL be anxious.  Very often, the most innocent question or remark will start the patient on a downward spiral into the rathole, and possibly sharp words will be exchanged, and it is not because of anything you did or said.  In these times, it is the disease and chemicals talking.  OK, this ends what I know as fact.  The rest is what Elaine and I have learned.  After a cool-down period, talk to each other.  Speak freely. There can be no elephants in the room. Just know that these periods are fleeting and you WILL make it though. (Of course, it helps if the patient is madly in love with the caregiver, but then that's a different story for a different day, , ,  ;-)


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

Holding Pattern

But that's not a bad thing.  The radiation treatments continue with 9 down and 26 left.  I seem to have made it through the first week of chemo relatively unscathed.  And, I think that the ultimate solution to my sleeping problem may be Ambien.  All will be revealed. . .


But there are a couple of things I want to mention.  Now, when I started this blog, it was to be as a vehicle for disseminating information to the most people possible without having to repeat it too many times.  Nothing more elegant than that.  Oh, I knew that it would become therapy for me, and it already has.  But, in no way, is it meant as wisdom for the ages.  Oh, if somebody, somewhere gleans something that helps them or someone they know, that's all the better.  But I do feel I'd like to share a couple of teaching (hopefully not 'preaching' moments. . .  ;-)


First, I have learned more than I ever wanted to about anxiety.  Some of it was my own doing - I felt that I knew it all having been through David's ordeal 10 years ago and nothing could throw me.  But, the different perspective does, indeed, bring different thoughts and feelings.  I found myself being scared, short-tempered, and irrational in my expectations of myself and others.  Fortunately, Elaine had the foresight for me to get a prescription of Xanax in advance.  And then the first time took one and noticed the way it made me feel, I realized that, up to that point, I really had not understood what anxiety actually is.  But, it was the major contributor to my edginess, shortness or breath, and general fatigue.  I mention this as a 'public service' to anyone else out there who may have found or will someday find their own bodies inhabited by a scary, strange interloper.  If you do, get it taken care of immediately - it is NOT good for you!!!


Second thing is another public service announcement aimed at people in the Sarasota-Bradenton area.  If you ever find yourself afflicted with cancer of know someone who has or will be, check out the magnificent Center for Building Hope in Lakewood Ranch.  They are totally dedicated to helping people with cancer and their caregivers/friend/families bear their particular crosses.  They have activities, classes, support groups, and networking groups that meet regularly.  Elaine and I were there yesterday for a relaxation class and it was great.  I'm not saying that it's a place I'm going to hang out regularly, but both of us will continue to avail ourselves of the resources available.


Class is over.  Everyone still with me gets an "A"!!


Peace and love to all!!
Joe

20% of the Way!!

Radiation treatment number 7 of 35 today, so 20% of the way!!!  Of course, it's the easiest 20%, but who's counting??  ;-)


I had an appointment with Dr. Caudell, my radiation oncologist yesterday, and with Dr. Russell, my medical oncologist, today.  Besides being the angels that are going to save my life, they both gave me good progress reports.  Of course, the caveat is that it only gets worse from here, but that's what I expected.  Frankly, I expected it to have worse so far. . .   I know, don't be whistling past the graveyard and tempt the fates, but it will be as bad as it gets and I'll just cope with it, as best I can.  As both doctors pointed out, they will be doing everything they can to make the road as bearable as possible.


I'm still beastly tired, but may have gotten some leads on getting better rest.  I'm going to step up from Xanax to Ativan at bedtime tonight as the anti-anxiety drug of choice.  And, my genius wife Elaine devised a way I can go back to sleeping on my stomach.  And, tomorrow, I'll be going to the Center for Hope in Sarasota (formerly the Wellness Center) for a class in internal relaxation techniques.  I'm definitely hopeful. . .


Will keep you all posted!!


As ever,
Joe

Week 2 Begins!!

And, it was mostly uneventful.  Had radiation treatment 6 with 29 more to go.  And this one was the easiest so far, I must say -I managed to find the one comfortable position possible in the hockey mask/harness device, and that makes all the difference.  I have been assured that more side effects will start showing up next week, but we'll burn that bridge when we come to it. . .


And I have to say I still haven't figured out how the Trilogy Machine that actually administers the radiation works.  The damn thing looks like some kind of space junk from Star Wars.  I was expecting more of a ray gun looking thing, but not so.  In fact, the part that looks like the spaceship from Plan 9 From Outer Space actually has a sticker of a monkey attached to it. . .   Hey, as long as it works. . . .


Peace and love to all!!!
Joe

Priming for Week 2

So far, knock on wood. . .   Five days after the first chemo, there have not been too many ill effects from it.  I guess I had never known that nausea can also include burping and hiccupping as well as that wonderful sick feeling we're all familiar with.  But that is what I primarily experienced a few times, though not to a major degree.  There was a short spell of that condition we don't talk about in public so much but that requires frequent trips, to use the vernacular from "How I Met Your Mother", to go read a magazine,


The biggest issues so far are I'm finding sleeping a problem as I've been a lifelong stomach sleeper, and just can't do that as long as I'm still "the tube dude".  Sleeping on my back makes me dizzy and sleeping on my side is awkward as I fear rolling over onto the feeding tube and ripping it out.  And, I have absolutely NO appetite,  Most times, looking at food repulses me.  Hopefully, this is not a permanent condition!!




But, all in all, the beat goes on and recovery is out there!!


Peace and love to one and all!!!
Joe

Short But Sweet

OK, campers. . .  The firs week of radiation and chemo is done!!  Other than being beastly tired, I feel pretty good.  No fallout from the chemo yet, but it seems that if it hits, it will be over the weekend.  We shall see about that, I suppose.


Peace and Love to all as I try to get a weekend of rest to go back to the wars next week!!

Portrait of a Cancer Fighter!!

Portrait of a Cancer Fighter!!

Finally, I figured out how to post a picture to this blog!!!  Some of us are slow learners.  And I can't blame the disease for my brain malfeasance. . . .

Anyway, this was taken the morning before the first treatment.  We'll see how it goes as the weeks progress. . .

So today began with radiation treatment #4 (31 more to go) and the second day of fluid infusion after chemo.  So far, so good on the chemo - I did feel a slight wave of nausea late last night but the prescriptions that I got set me right.  It will be interesting to see how it goes once the anti-nausea drugs that were in the IV cocktail wear off.  I have to say that cancer is not for wimps - there's a new adventure every day.  And I'm finding all the routines I have to follow to try to retain dental health, to treat the mouth ulcers that will soon begin to form, and to keep up with the five time a day swallowing exercises is near a full-time job.  If you don't think you're up to the regimen, don't sign up for the disease, I tell you!!  (Yes, that is a feeble attempt at a joke. . .  ;-)

But what is not a joke are the revelations I've been having about where I see my life going after this.  I know I had mentioned working for/volunteering at Hospice after David passed 9 years ago as I was very, very impressed by the organization and the people that work there.  I will admit that my interest waned for a while, but it is definitely coming back and I know that I will ultimately volunteer there, with the perspectives of both someone who has seen a loved one's passage eased by the angels of Hospice and of a cancer survivor my own self.  But what I have learned these past few weeks grappling with the disease and meeting and talking with others with the disease, I realize how to be the most effective volunteer I can be.  What I'm finding is that people want to talk about their experiences and that's what comforts them.  So, when I become a volunteer, I'll certainly have the 'street cred', but that's not what my 'clients' are going to care about.  So, instead of telling them about what David and I went through, my entire personal introduction will go something like, "My name is Joe, my son David had a very satisfying Hospice experience x years ago and I'm in my nth year of becoming a survivor.  Now, tell me what's your story".  I will be able to listen and I will mean it.  I will only mention my past history again if they ask.  People are listening to me right now and I want give the future patients of the disease the empathetic ear they deserve.

OK, off of soapbox.

Peace and love to all!!!!
Joe

Going to the Mats With Chemo!!

OK, first it's been a while since I last posted, not because I haven't been feeling up to it but because the wi-fi in the hotel where we've been staying this week is beastly sloooooooooooooooooooooow and I tend to nod off while I'm waiting for responses. . .


But, so far, there have been three radiation treatments, my first round of chemo on Tuesday, and then round one of fluid infusion today with round two to follow tomorrow.  The chemo IV also included two different types of anti-nausea drugs and they gave me prescriptions for three others.  Not sure if this is a precaution or if I can expect serious fun and games after the IV goodies wear off.  Time will tell, I suppose. . . .


But the time in the chemo pod has been interesting.  Yesterday, we talked with a guy who is on an 8-hour, once a week regimen and had is treatment this week delayed a day so he could go to the Rays home opener.  My kind of guy!!!  And today, my pod mate was a woman I used to work with 11 years ago at FCCI Insurance in Sarasota.  Once again, a small world but I wouldn't want to have to paint it.


Like I say, so far, I have had no ill effects from anything, other than wearing out rather quickly (of course, last night, I was beat at about 9 PM and then caught second wind and was wired until 11:30).  But there is still something different every day.  But, I any reveling in knowing that, as Adrienne said, "The Recovery Starts Now!"


Peace and love to all!!
Joe