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
Wednesday, October 29, 2014
Saturday, October 18, 2014
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
Wednesday, October 15, 2014
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
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
Tuesday, October 14, 2014
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
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
Monday, September 29, 2014
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
Thursday, September 11, 2014
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
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
Tuesday, September 2, 2014
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
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
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