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