Today is the 14 month post cancer follow up.
Cancer.
That word still lingers in the back of our minds lurking as we continue to go through appointments with ENT, CAT scans, and mild scares from 'something showed up' we need another scan.
To...it was nothing.
However the good news is that Rich is doing better and he has this behind him.
He also told the doctors that he wouldn't ever go through treatment again. I know he is solid in those thoughts. Chemo nearly killed him and he reacted so poorly to it.
I'm hoping that our follow up visit will be another one where Dr. Witek slaps him on the back and tells him he is doing well.
We may have passed that magical one year date and now look forward to a 5 year prognosis.
Statistics show that if the cancer is to return, it will in the first year...or within 5 years.
So we still live with a cloud over our heads. However that cloud feels pretty distant at this time.
Showing posts with label after treatment. Show all posts
Showing posts with label after treatment. Show all posts
Tuesday, August 16, 2016
Sunday, February 14, 2016
Visit with Rahim/ Chemo Oncologist
The blood labs turned out fine and Rahim basically met us with a follow up.
He let us know that he was scheduling a follow up CT scan that he thought should have already been done to the one done in Boscobel in August.
"Just to be diligent," is what he said.
The August CT scan had some 'things' in it that should be looked at again.
Um. I don't like that. But I recall asking the attending doctor at the ER what exactly did all the techno stuff mean?
His answer? See the VA and have a bone scan also scheduled. This was the doctor that had seen us 9 months before the VA caught the throat cancer and had said to Rich...get ENT to see you ASAP.
Okay, so I'm not going to obsess over another scan. Rich has already said if there was more cancer to deal with in the future, we would only treat it with Palliative Care and nothing else.
So far things are good, the basal skin cancer will be removed next month and we see a doctor this month to check on the floaters in his eyes.
The stroke has affected Rich's eye - brain co-ordination and he is supposed to doing home assignments exercises for that. He does it when he feels like it.
Too busy to take 5 minutes or 10 minutes a day for it. I'll have to insist on more Tai Chi if I can too. He has dropped the ball on that.
So here it is 13 months from the day he came home and said the word Cancer.
He is doing pretty well I think ... and so do the doctors, for going through a very rough regime of treatment and all of the things in between that he went through.
However, Rich thinks he isn't doing as well. His weight has stayed fairly stable. Up and down a few pounds with each doc visit.
Onward. Let this March be a much better one. Eye surgery and at the end of the month? Remodeling begins!
He let us know that he was scheduling a follow up CT scan that he thought should have already been done to the one done in Boscobel in August.
"Just to be diligent," is what he said.
The August CT scan had some 'things' in it that should be looked at again.
Um. I don't like that. But I recall asking the attending doctor at the ER what exactly did all the techno stuff mean?
His answer? See the VA and have a bone scan also scheduled. This was the doctor that had seen us 9 months before the VA caught the throat cancer and had said to Rich...get ENT to see you ASAP.
Okay, so I'm not going to obsess over another scan. Rich has already said if there was more cancer to deal with in the future, we would only treat it with Palliative Care and nothing else.
So far things are good, the basal skin cancer will be removed next month and we see a doctor this month to check on the floaters in his eyes.
The stroke has affected Rich's eye - brain co-ordination and he is supposed to doing home assignments exercises for that. He does it when he feels like it.
Too busy to take 5 minutes or 10 minutes a day for it. I'll have to insist on more Tai Chi if I can too. He has dropped the ball on that.
So here it is 13 months from the day he came home and said the word Cancer.
He is doing pretty well I think ... and so do the doctors, for going through a very rough regime of treatment and all of the things in between that he went through.
However, Rich thinks he isn't doing as well. His weight has stayed fairly stable. Up and down a few pounds with each doc visit.
Onward. Let this March be a much better one. Eye surgery and at the end of the month? Remodeling begins!
Friday, January 15, 2016
6 Month follow up and CT scan
December 17th.
The long drive to Madison seemed to take forever. We listened to the radio and commented on how wet our winter was so far. We talked about just about anything and everything but what we were going for.
A follow up CT scan 6 months after the last radiation treatment.
It seemed long ago, yet such a short time ago. Was this going to be fine? I don't know what Rich thought because he didn't seem to be worried about it.
Both of us were in a fairly positive mood. The long day at the University of WI Hospital didn't really excite us much. We found the lab and got the blood work. We found the cafeteria and both of us had great lunches.
UW Hospital of Madison is one of the most frustrating places to get around in. Nearly every first time to ... well, even us after 35 some visits, sometimes have to ask for help to get from one place to another.
Finally we were in the waiting room for Radiology Oncology. I recall our first wait there. Scared to death of the unknown that was to come. Frightened and nervous. I wasn't frightened now, to say I as not nervous would be an overstatement.
I was just hoping for good news as was Rich. We'd found that doing Tai Chi together had really helped his overall feeling and general attitude. He was better than when Dr. Witek saw him in September when Rich still felt exhausted from the treatments.
His name was called and we went into Witek's exam room where his Medical Assistant took his vitals. Rich's weight was pretty good. It was 179. He'd started cancer treatment at somewhere in the 190's. But the weight loss had actually come after the treatment stopped.
Rich hadn't seen it himself, but he'd been more active around the farm and of course not having all of his teeth and the saliva issue had curbed his appetite some. Over the past few months, his weight had settled right around the 178 or 9 lbs.
The hair he'd lost was coming in. In back where the tomography targeted radiation had caused a complete loss, the hair was coming in black and curly. A startling difference to his mostly silver straight hair. His goatee was black on one side too. I thought it was pretty cool how one side of the mustache and goatee had come back in such a dark contrast.
Dr. Witek walked in and turned on his heel to face Rich.
"Good news man! It is all good, nice and clear CT scan!"
Rich grinned, I felt all the air go out of me and felt joy.
Dr. Witek asked about Rich's vision and mentioned that the CT scan in September after the PET scan had shown a significant stroke in the occiptal lobe of the brain.
Rich waved his hand and said things were better. He was doing Physical Therapy for that and Tai Chi for overall balance and besides, it made him feel relaxed and good.
We inquired about his wedding and Dr. Witek grinned and began to show us photos and talk about his wedding. It was a very happy moment between Dr. and Patient.
He examined Rich and then made a time for follow up. He stated that Rich had had enough radiation for a while and the next visit should be in April and no CT scan.
It was the most beautiful Christmas Gift we could have gotten.
The long drive to Madison seemed to take forever. We listened to the radio and commented on how wet our winter was so far. We talked about just about anything and everything but what we were going for.
A follow up CT scan 6 months after the last radiation treatment.
It seemed long ago, yet such a short time ago. Was this going to be fine? I don't know what Rich thought because he didn't seem to be worried about it.
Both of us were in a fairly positive mood. The long day at the University of WI Hospital didn't really excite us much. We found the lab and got the blood work. We found the cafeteria and both of us had great lunches.
UW Hospital of Madison is one of the most frustrating places to get around in. Nearly every first time to ... well, even us after 35 some visits, sometimes have to ask for help to get from one place to another.
Finally we were in the waiting room for Radiology Oncology. I recall our first wait there. Scared to death of the unknown that was to come. Frightened and nervous. I wasn't frightened now, to say I as not nervous would be an overstatement.
I was just hoping for good news as was Rich. We'd found that doing Tai Chi together had really helped his overall feeling and general attitude. He was better than when Dr. Witek saw him in September when Rich still felt exhausted from the treatments.
His name was called and we went into Witek's exam room where his Medical Assistant took his vitals. Rich's weight was pretty good. It was 179. He'd started cancer treatment at somewhere in the 190's. But the weight loss had actually come after the treatment stopped.
Rich hadn't seen it himself, but he'd been more active around the farm and of course not having all of his teeth and the saliva issue had curbed his appetite some. Over the past few months, his weight had settled right around the 178 or 9 lbs.
The hair he'd lost was coming in. In back where the tomography targeted radiation had caused a complete loss, the hair was coming in black and curly. A startling difference to his mostly silver straight hair. His goatee was black on one side too. I thought it was pretty cool how one side of the mustache and goatee had come back in such a dark contrast.
Dr. Witek walked in and turned on his heel to face Rich.
"Good news man! It is all good, nice and clear CT scan!"
Rich grinned, I felt all the air go out of me and felt joy.
Dr. Witek asked about Rich's vision and mentioned that the CT scan in September after the PET scan had shown a significant stroke in the occiptal lobe of the brain.
Rich waved his hand and said things were better. He was doing Physical Therapy for that and Tai Chi for overall balance and besides, it made him feel relaxed and good.
We inquired about his wedding and Dr. Witek grinned and began to show us photos and talk about his wedding. It was a very happy moment between Dr. and Patient.
He examined Rich and then made a time for follow up. He stated that Rich had had enough radiation for a while and the next visit should be in April and no CT scan.
It was the most beautiful Christmas Gift we could have gotten.
Wednesday, December 9, 2015
Cancer friendships
I don't know how to explain it, but by the powers that be, we met another couple who has been touched and devastated by cancer.
I met her on a social media site and after much back and forth messaging, we set up a tentative meet. We had decided that we were not axe murderers nor were we some sort of weird internet psychos. Well we felt we weren't.
We set up a meeting in a public place and had a picnic.
Her husband N, had had stomach cancer the year before and had just finished treatment in January 2015. It was now October.
Rich and I were getting ready for the 3 month follow up and PET scan. The guys talked about old cars and dogs.
Their lab Jeg was a great ice breaker. Dogs always are and who can resist such a handsome face as this.
We spent a couple of hours yacking and promised to get together again.
S, N's wife and I keep in touch nearly daily. We have each other's home phone numbers, work numbers, and cell numbers with the understanding that we can call on each other at any time of day or night.
People and caregivers who have gone through cancer don't have to pussy foot about what to say to each other.
We talk about the treatments, the chemo brain, the horrors of what they go through and... what the care giver goes through.
How we stumble from one step to another our lives tangled up in doctors, labs, radiology, blood tests, and weight loss or gain.
There is no stumbling around for the 'right' thing to say to each other. A common bond is created.
At the end of our first meet the guys shook hands and gave each other half hugs.
S and I held on to each other like lost lovers, I think we were happy to each find each other in the living flesh.
We've tried to schedule a get together for dinner or something every few weeks.
N has been feeling unwell and today I received the text.
Tonight we'll go see him in the hospital. We are all entering new territory here.
There are a lot of what ifs...or what now?
Our friendship has grown quite close and quite fast.
Between cancer friends, there is only this. Enjoy each moment with each other and don't look to hard at the future.
Treat each parting as a goodbye.
Hold on tight. Cancer is a wild ride.
I met her on a social media site and after much back and forth messaging, we set up a tentative meet. We had decided that we were not axe murderers nor were we some sort of weird internet psychos. Well we felt we weren't.
We set up a meeting in a public place and had a picnic.
Her husband N, had had stomach cancer the year before and had just finished treatment in January 2015. It was now October.
Rich and I were getting ready for the 3 month follow up and PET scan. The guys talked about old cars and dogs.
We spent a couple of hours yacking and promised to get together again.
S, N's wife and I keep in touch nearly daily. We have each other's home phone numbers, work numbers, and cell numbers with the understanding that we can call on each other at any time of day or night.
People and caregivers who have gone through cancer don't have to pussy foot about what to say to each other.
We talk about the treatments, the chemo brain, the horrors of what they go through and... what the care giver goes through.
How we stumble from one step to another our lives tangled up in doctors, labs, radiology, blood tests, and weight loss or gain.
At the end of our first meet the guys shook hands and gave each other half hugs.
S and I held on to each other like lost lovers, I think we were happy to each find each other in the living flesh.
We've tried to schedule a get together for dinner or something every few weeks.
N has been feeling unwell and today I received the text.
Tonight we'll go see him in the hospital. We are all entering new territory here.
There are a lot of what ifs...or what now?
Our friendship has grown quite close and quite fast.
Between cancer friends, there is only this. Enjoy each moment with each other and don't look to hard at the future.
Treat each parting as a goodbye.
Hold on tight. Cancer is a wild ride.
Tuesday, December 1, 2015
Palliative Care Visit Two
From my written journal ... Palliative Care Visit November 24th.
I think I need a break some days from being a Caretaker. We met with one of the Fellows — meaning a Doctor who is going to specialize in Palliative Care after he is done with learning and applying his knowledge in a setting like the VA Hospital.
Doc Fellow wanted to know what was on Rich’s mind today. Well let’s say this, this Fellow didn’t really know Rich and so asking him that question would lead to a conversation that had nothing to do with Palliative Care.
Rich needs someone to direct and focus him. So Rich talked about the pain from where his PEG had been. The Fellow jumped on that and I interjected that perhaps it hurt more in the past two days because someone had been hunting, shot a doe, and had cleaned it in the woods before getting his wife to come assist him. Dr. Fellow then immediately dismissed the pain as a pulled muscle. Probably dismissing is not a good idea with Rich.
After Dr. Faris [thank goodness] showed up, … Dr. Faris is Rich’s psychologist and has worked with us for about 6 months…he was able to help direct Rich a bit more.
It came back to the happiness issue. Rich said he has never been truly happy since he came back from Southeast Asia. Ever. There is no joy in his life.
At this point I become skeptical. He has never ever had joy? What about the times he and are are kidding around? What about the things he plans to do with his grandkids? What about the joy he feels when he is able to visit with his daughter or the joy that Lily brought him this summer? This was not happiness? Laughter, the twinkle in the eye, the hugs given to friends and the laughter…is not joy or happiness?
At this point I become skeptical and see Rich as a Drama Queen. In front of the doctors he is all gloom and doom. In social situations? He laughs, he kids, he smiles and when we are alone he is not the same man sitting in that room. So I am confused.
Dr. Faris inquired about our incredible relationship together. Rich huffed a small almost sarcastic laugh. “I can’t make love to her, she has had medical issues and an infection…and then I don’t think she is into it, not like I want to be into it… So know I just don’t feel anything.” He made another noise that relayed his frustration? disgust?
All I know is I glanced at the two doctors and saw them both quickly look at the floor. Dr. Faris’s face turned red. I know the question he was asking in regards to our relationship was not about sex, but about the caring and deep love we had for each other. Dr. Fellow, well, by his expression, this conversation was going in a direction he had no idea how to control.
Rich went on to repeat his horror stories from Vietnam. I sat back, already feeling like a heel and listened to the same thing I’ve heard so many times over and over. What was coming from him were flags for mental health issues and not Palliative Care issues. He was unhappy, he felt tired, he felt like he couldn’t do anything, his cancer had ruined his life.
I wanted to stop him. When he said those things about me, I felt the slow burn and considered leaving the room. But I wanted to see what progress we could make with Palliative Care.
Dr. Fellow soon jumped up and excused himself. He was gone for about 20 minutes and actually some of the tension left the room. Dr. Faris was able to converse and steer the conversation back to what Rich was hoping PC could do for him to make things easier.
I suggested that it seemed to me that at the moment his mental health and this time of the year were overwhelming Rich’s life and that we should try the Physical Therapy and Tia Chi and then return to Palliative Care to see if these things worked for helping Rich’s balance and strength issues.
I also felt that there needed to be a bit more intervention at this point … right now… with Mental Health.
Dr. Faris agreed.
Dr. fellow came back in and we tried to get back on track. Dr. Fellow explained that Palliative Care was not a fast moving process. One of the big issues he wanted to bring up today was a discussion of the future.
What would Rich do if the cancer came back? Had he thought of end of life care? What was his thoughts on dying? Living?
We'd addressed those issues already we told Dr. Fellow. We had an Estate plan drawn up as well as end of life plans, also known as Living Wills.
I wonder where this direction is going. Rich's really recovered quite well from all medical stand points, yet he insists that he isn't.
I wonder if I were in his shoes, how would I feel?
I guess I would certainly feel lucky to be still alive. And that doesn't seem to satisfy him at all.
Monday, September 21, 2015
New Scan coming up
The CT scan of the brain will be on Thursday this week.
Rich's comments about the latest developments are basically this:
"What next?"
At this point I am trying to get the VA and the UW to be able to 'communicate' with each other better.
I'm not sure that is possible.
So until later this week, keep your fingers crossed.
Thursday, September 10, 2015
Nearly 3 months out of Radiation
Rich had his once a year physical with his principle provider this past week.
She went over his med list and I gave her the CT scan results and ER results from the visit we made to the Boscobel Hospital two weeks ago.
His continued main complaint is exhaustion and being tired all of the time.
When dealing with a person who has had a horrible illness like cancer and especially the very difficult treatment regime that goes along with it, recovery can take a long time.
The chemo and radiation therapy took a heavy toll on him and he feels he should have bounced back quickly.
On the 15th of this month we have the PET scan. I am nervously wringing my hands. Questions fly through my mind while trying to go to sleep.
Is it all gone? Is it going to be okay?
How are we going to deal with this tiredness?
Then we get a phone call from the clinic in Baraboo, they want to set up another CT scan as they read there was a lesion on Rich's right adrenal gland.
Okay. I've done a bit of reading and this could be nothing, or it could be something.
Or in fact, it could help explain the sheer exhaustion that he has been having.
I read his last blood panel. I wonder sometimes if a person could be too informed. It is good to know your results, but then again, do those numbers really show the true health of the individual? Do we really want to know exactly everything? Would I want to add worry?
I think not. Certain parts of his blood panels were high and others low. However, his primary care doctor handed them to me to put in my file....and really didn't say much about the results.
His red blood cell count is still low but not significantly. She did mention that.
So now we wait until Tuesday. Both of us are on edge, Rich won't say it, but I know it is on his mind.
She went over his med list and I gave her the CT scan results and ER results from the visit we made to the Boscobel Hospital two weeks ago.
His continued main complaint is exhaustion and being tired all of the time.
When dealing with a person who has had a horrible illness like cancer and especially the very difficult treatment regime that goes along with it, recovery can take a long time.
The chemo and radiation therapy took a heavy toll on him and he feels he should have bounced back quickly.
On the 15th of this month we have the PET scan. I am nervously wringing my hands. Questions fly through my mind while trying to go to sleep.
Is it all gone? Is it going to be okay?
How are we going to deal with this tiredness?
Then we get a phone call from the clinic in Baraboo, they want to set up another CT scan as they read there was a lesion on Rich's right adrenal gland.
Okay. I've done a bit of reading and this could be nothing, or it could be something.
Or in fact, it could help explain the sheer exhaustion that he has been having.
I read his last blood panel. I wonder sometimes if a person could be too informed. It is good to know your results, but then again, do those numbers really show the true health of the individual? Do we really want to know exactly everything? Would I want to add worry?
I think not. Certain parts of his blood panels were high and others low. However, his primary care doctor handed them to me to put in my file....and really didn't say much about the results.
His red blood cell count is still low but not significantly. She did mention that.
So now we wait until Tuesday. Both of us are on edge, Rich won't say it, but I know it is on his mind.
Thursday, September 3, 2015
Impatient Patient.
Well as Rich recovers we hit small set backs and tiny steps forward.
For him though it doesn't feel as though he is healing at all.
Part of the issue is our very hot and humid days. They sap the strength out of patients who have had radiation treatment.
No matter how many times I remind him of the fact he remains unconvinced.
In his words he wants to recover and be 'better than before'.
However, given his age and health condition prior to treatment, that is a bit of a stretch and one he is not willing to accept.
We had several appointments this week at the VA hospital in Madison.
His eye glasses were ordered which are good, he is having some trouble with his vision. However we couldn't get any answer regarding his cataracts and what was the criteria for that. The technician just stated that he would get a follow up appointment in about 6 months.
Pardon my skepticism, but since they were not able to locate his prescription from the 'outsourced' doctor, I know it will be up to us to follow up.
The eye clinic apparently is so overwhelmed that they cannot keep up with their services to the veterans.
Being a patient is a full time job, being the care taker of a patient sometimes seems more than full time.
We will be going to see Dr. Feris once a week for a while to try and work with the depression issue. Dr. Feris is incredible and really knows his stuff. However Rich has to cooperate a bit by not concentrating all of the time on 'the bad' in his life.
I'm not in his shoes, but I can see that a more positive attitude at this point is what he really needs and I don't know how to help him find that.
We were given some homework which I felt was rather helpful.
I brought out the papers the last night and asked him to tell me what happened today that he felt pleasant.
Rich gave me a look. And said, "Put that away, it is stupid, and I'll do it if I feel like it."
I suppose from my view point, I get discouraged with that attitude as it won't assist him in getting better at all.
When we talk about the Grand children or time spent with the kids, he positively lights up. So I know that not everything in his life is negative.
But I tire of the same answer every single day.
"How are you?"
Grunt and a dirty look.
"Not worth a sh*t," is the daily mantra.
He is an impatient patient, looking for a fix that isn't there.
Dr's Feris and Cordes still feel part of the issues are stemming from biological problems and no mental health medication is going to fix that.
I agree with them 100%.
Goal.
Get Rich off the farm and engaged in doing something enjoyable.
For him though it doesn't feel as though he is healing at all.
Part of the issue is our very hot and humid days. They sap the strength out of patients who have had radiation treatment.
No matter how many times I remind him of the fact he remains unconvinced.
In his words he wants to recover and be 'better than before'.
However, given his age and health condition prior to treatment, that is a bit of a stretch and one he is not willing to accept.
We had several appointments this week at the VA hospital in Madison.
His eye glasses were ordered which are good, he is having some trouble with his vision. However we couldn't get any answer regarding his cataracts and what was the criteria for that. The technician just stated that he would get a follow up appointment in about 6 months.
Pardon my skepticism, but since they were not able to locate his prescription from the 'outsourced' doctor, I know it will be up to us to follow up.
The eye clinic apparently is so overwhelmed that they cannot keep up with their services to the veterans.
Being a patient is a full time job, being the care taker of a patient sometimes seems more than full time.
We will be going to see Dr. Feris once a week for a while to try and work with the depression issue. Dr. Feris is incredible and really knows his stuff. However Rich has to cooperate a bit by not concentrating all of the time on 'the bad' in his life.
I'm not in his shoes, but I can see that a more positive attitude at this point is what he really needs and I don't know how to help him find that.
We were given some homework which I felt was rather helpful.
I brought out the papers the last night and asked him to tell me what happened today that he felt pleasant.
Rich gave me a look. And said, "Put that away, it is stupid, and I'll do it if I feel like it."
I suppose from my view point, I get discouraged with that attitude as it won't assist him in getting better at all.
When we talk about the Grand children or time spent with the kids, he positively lights up. So I know that not everything in his life is negative.
But I tire of the same answer every single day.
"How are you?"
Grunt and a dirty look.
"Not worth a sh*t," is the daily mantra.
He is an impatient patient, looking for a fix that isn't there.
Dr's Feris and Cordes still feel part of the issues are stemming from biological problems and no mental health medication is going to fix that.
I agree with them 100%.
Goal.
Get Rich off the farm and engaged in doing something enjoyable.
Tuesday, August 25, 2015
Hair is growing back!
Dr. Witek had told Rich not to cut his hair during treatment and that he would lose hair across the back of his head.
He did, but yesterday we saw itty bitty hairs coming back in.
His facial hair is starting to come back in.
This shot probably looks as though he is sad but he was just watching out the window while having morning coffee.
We were watching the mules drink water from the Big Tank.
We still seem to be battling some stomach/intestine issues but at least he isn't pain like he was before.
Yesterday was a 'good' day. He felt like doing a bit more than he has in a while.
Tuesday, August 18, 2015
Follow ups and after care
Things I learned today.
Swallow/Speech Therapy.
Head and Neck Cancer patients must always do swallowing exercises and eat small meals often. To miss the exercises or not eat a patient will run the risk of losing their ability to swallow.
This is forever. Not just during the treatment and a while after the treatment.
Radiation damages the muscles of the head and neck. In order to keep them working, the patient needs to work at it. For the rest of their lives.
In the back of my mind I knew this because I'd done research at PubMed and also had been in contact with other HNC patients through a website called CancerCompass.
Rich had been doing very well until he hit a road block with his blood pressure and some stomach issues. We had gone to the VA clinic in Baraboo and the doctor a few weeks ago had felt that the stomach/bowel issues were from a change in medication and diet. The first line of treatment is to take away the offending medications which could cause the problem.
However, Rich was still having some pretty intense pain in his lower left quadrant [bowels] and intermittent diarrhea.
We spoke with Dr. Rahim and Rich explained what had been going on.
Dr. Rahim thought for a moment and then explained that Rich might have had a shock to his intestinal system when Miss Peggy was removed.
This could have caused paralytic ileus, or a slow down of the squeezing motion [known as paristalsis] of the intestines to move digested food.
This in turn could have caused a partial blockage of the intestines.
To confirm this, we went to X-ray and indeed a partial blockage was found.
So I/we learned that the digestive system can have a shock and get fouled up.
Cancer and Depression.
Well these two things can go together. One of the issues is that when you finish treatment, you figure it is over and you are going to feel much better right?
Not necessarily.
Rich had a few weeks where he did feel much better. It was amazing, he felt alive and energetic.
Then things went a bit south. The energy level dropped drastically.
Let me add here that at this time our weather turned very hot and very humid. Very hot conditions are hard on anyone, let alone a cancer patient.
Recovery from HNC treatment can take a long time. Life in many ways does not return to pre-cancer normal.
In fact you should have a mindset that life after treatment may just be your 'new' normal.
So combine feeling terrible, with low energy, pain that you don't understand, and the inability to get things done that you want to do and...
depression sets in.
The journey through treatment is only the beginning as the road to healing is not an easy one either.
As one of the nurses told us today.
"One Day at a Time."
Swallow/Speech Therapy.
Head and Neck Cancer patients must always do swallowing exercises and eat small meals often. To miss the exercises or not eat a patient will run the risk of losing their ability to swallow.
This is forever. Not just during the treatment and a while after the treatment.
Radiation damages the muscles of the head and neck. In order to keep them working, the patient needs to work at it. For the rest of their lives.
In the back of my mind I knew this because I'd done research at PubMed and also had been in contact with other HNC patients through a website called CancerCompass.
Rich had been doing very well until he hit a road block with his blood pressure and some stomach issues. We had gone to the VA clinic in Baraboo and the doctor a few weeks ago had felt that the stomach/bowel issues were from a change in medication and diet. The first line of treatment is to take away the offending medications which could cause the problem.
However, Rich was still having some pretty intense pain in his lower left quadrant [bowels] and intermittent diarrhea.
We spoke with Dr. Rahim and Rich explained what had been going on.
Dr. Rahim thought for a moment and then explained that Rich might have had a shock to his intestinal system when Miss Peggy was removed.
This could have caused paralytic ileus, or a slow down of the squeezing motion [known as paristalsis] of the intestines to move digested food.
This in turn could have caused a partial blockage of the intestines.
To confirm this, we went to X-ray and indeed a partial blockage was found.
So I/we learned that the digestive system can have a shock and get fouled up.
Cancer and Depression.
Well these two things can go together. One of the issues is that when you finish treatment, you figure it is over and you are going to feel much better right?
Not necessarily.
Rich had a few weeks where he did feel much better. It was amazing, he felt alive and energetic.
Then things went a bit south. The energy level dropped drastically.
Let me add here that at this time our weather turned very hot and very humid. Very hot conditions are hard on anyone, let alone a cancer patient.
Recovery from HNC treatment can take a long time. Life in many ways does not return to pre-cancer normal.
In fact you should have a mindset that life after treatment may just be your 'new' normal.
So combine feeling terrible, with low energy, pain that you don't understand, and the inability to get things done that you want to do and...
depression sets in.
The journey through treatment is only the beginning as the road to healing is not an easy one either.
As one of the nurses told us today.
"One Day at a Time."
Thursday, July 30, 2015
Divorcing Miss Peggy
7 Weeks out of treatment!
Things are starting to turn around the corner and come back towards a new normal.
Rich feels like doing more things, like mowing the pasture weeds down, doing light yard work but the recent heat wave along with a lot of humidity has dampened his spirit.
He feels like he has the whole summer to catch up on.
Indeed in many ways he has weeks of 'life' that he sort of missed while being in treatment. Chemo was no cakewalk as was the radiation.
July 27th was the day scheduled for the removal of the PEG tube. In the beginning, we'd decided to call this tube 'Miss Peggy'. Rich had said that if he had to sleep with the damn thing it was getting a name.
And he gave it a woman's name, he said, because 'she' was such a pain to look after and was always getting in the way.
I had to go to work and Rich had said he felt strong enough to drive to Madison and back on his own.
The PEG tube was in place in case Rich lost the ability to swallow, which often comes with Throat Cancer treatment. The throat gets so intensely sore and painful it becomes impossible for some patients to swallow even pureed food. But he was a determined soul and we never had to use the feeding tube.
The withdrawal of the tube was painless he told me. He met with his psychiatrist afterwards. Dr. Cordes is an interesting person. He is blind and in some ways I think that makes him more perceptive to Rich, he doesn't see the body movements that Rich uses while he communicates but Dr. Cordes can hear the inflections in his voice.
Dr. Cordes greeted Rich and Rich happily announced to Cordes that he'd finally gotten his divorce. Dr. Cordes was temporarily thrown off as his mind wandered probably to all the meetings that Rich and I had gone to together.
"A divorce?" he asked.
"Yes Doc, from Miss Peggy, my feeding tube."
Rich explained that he and Cordes discussed his recovery and told the Doc that he still felt he wasn't doing 'good enough' even though everyone was telling him that he was. Dr. Cordes suggested that Rich do what everyone else around him was doing...giving him a pat on the back. Rich should stop and give himself a pat on the back.
In my observation, I told Rich that he was actually more active now than he had been in a year. He worked outdoors for longer periods of time and got more 'stuff' done.
I wonder if the cancer that had been growing there for who knows how long had been a part of his continous exhaustion last year. We'd addressed it as a possible depression issue, but what if it had been 'THE' Cancer?
I guess we'll never know at this point. And really we both don't care. Rich's attitude is so fantastic, even though he still has daily pain in swallowing, that we have no doubt in our heads that he is cured and better.
Of course the PET scan in September will address that issue for us.
Miss Peggy has exited our life. No more flushing 'her' and for Rich, she no longer gets in his way.
It is a good thing.
Things are starting to turn around the corner and come back towards a new normal.
Rich feels like doing more things, like mowing the pasture weeds down, doing light yard work but the recent heat wave along with a lot of humidity has dampened his spirit.
He feels like he has the whole summer to catch up on.
Indeed in many ways he has weeks of 'life' that he sort of missed while being in treatment. Chemo was no cakewalk as was the radiation.
July 27th was the day scheduled for the removal of the PEG tube. In the beginning, we'd decided to call this tube 'Miss Peggy'. Rich had said that if he had to sleep with the damn thing it was getting a name.
And he gave it a woman's name, he said, because 'she' was such a pain to look after and was always getting in the way.
I had to go to work and Rich had said he felt strong enough to drive to Madison and back on his own.
The PEG tube was in place in case Rich lost the ability to swallow, which often comes with Throat Cancer treatment. The throat gets so intensely sore and painful it becomes impossible for some patients to swallow even pureed food. But he was a determined soul and we never had to use the feeding tube.
The withdrawal of the tube was painless he told me. He met with his psychiatrist afterwards. Dr. Cordes is an interesting person. He is blind and in some ways I think that makes him more perceptive to Rich, he doesn't see the body movements that Rich uses while he communicates but Dr. Cordes can hear the inflections in his voice.
Dr. Cordes greeted Rich and Rich happily announced to Cordes that he'd finally gotten his divorce. Dr. Cordes was temporarily thrown off as his mind wandered probably to all the meetings that Rich and I had gone to together.
"A divorce?" he asked.
"Yes Doc, from Miss Peggy, my feeding tube."
Rich explained that he and Cordes discussed his recovery and told the Doc that he still felt he wasn't doing 'good enough' even though everyone was telling him that he was. Dr. Cordes suggested that Rich do what everyone else around him was doing...giving him a pat on the back. Rich should stop and give himself a pat on the back.
In my observation, I told Rich that he was actually more active now than he had been in a year. He worked outdoors for longer periods of time and got more 'stuff' done.
I wonder if the cancer that had been growing there for who knows how long had been a part of his continous exhaustion last year. We'd addressed it as a possible depression issue, but what if it had been 'THE' Cancer?
I guess we'll never know at this point. And really we both don't care. Rich's attitude is so fantastic, even though he still has daily pain in swallowing, that we have no doubt in our heads that he is cured and better.
Of course the PET scan in September will address that issue for us.
Miss Peggy has exited our life. No more flushing 'her' and for Rich, she no longer gets in his way.
It is a good thing.
Friday, July 17, 2015
One Month Follow Up!
Today we have the one month follow up with the Radiologist Oncologist, Dr. Witek.
We skipped the two week follow up as Rich was doing well.
Swallowing is still painful to him and he still takes a pain med in the morning to help with that.
I think we can say goodbye to that soon enough.
Eating bread is still difficult as the saliva glands are not producing like they once did.
We don't know if that will all come back or not.
Last night we ate steak, sliced and fried potatoes, and salads. A very normal meal. This was something I never thought would happen again [in the third week of treatment]. I think Rich is healing well and actually getting back into the swing of things much faster than anyone imagined.
He has always been determined that 'this' was something he would conquer and I think that attitude helped him greatly.
What happens next? I guess we wait for the PET scan to see if 'all' of the cancer was eradicated and move on from there.
We skipped the two week follow up as Rich was doing well.
Swallowing is still painful to him and he still takes a pain med in the morning to help with that.
I think we can say goodbye to that soon enough.
Eating bread is still difficult as the saliva glands are not producing like they once did.
We don't know if that will all come back or not.
Last night we ate steak, sliced and fried potatoes, and salads. A very normal meal. This was something I never thought would happen again [in the third week of treatment]. I think Rich is healing well and actually getting back into the swing of things much faster than anyone imagined.
He has always been determined that 'this' was something he would conquer and I think that attitude helped him greatly.
What happens next? I guess we wait for the PET scan to see if 'all' of the cancer was eradicated and move on from there.
Wednesday, July 1, 2015
16 days after
Today we are 16 days out of treatment.
Rich is doing better, he still tries to do 'too much' and push the limit, but that is in his nature right now.
He feels that he has fallen behind and lost time to the treatment.
He saw Dr. D, the dentist today and had his teeth and mouth cleaned. Dr. D said things looked very good in 'there'.
And Dr. D will be making some temporary teeth to fill in the ones that were taken before radiation/chemo treatments. The permanent ones will take longer to make than 30 days.
Rich is pretty excited to 'get' some teeth back!
Watch out world, he will be chasing after steak again!
His throat is still very painful but compared to some cases, I guess he is doing quite well and healing quite fast.
It seems like a miracle ... we don't have an appointment now for nearly a week and a half!
I feel like I could drive to the VA hospital with my eyes closed.
Total mileage for driving back and forth for treatments and for other appointments since April 28th?
6, 250 miles.
Whew.
I return to work at midnight tonight.
So things are returning to normal, something I wasn't sure would happen at the end of April.
So far, so good.
Rich is doing better, he still tries to do 'too much' and push the limit, but that is in his nature right now.
He feels that he has fallen behind and lost time to the treatment.
He saw Dr. D, the dentist today and had his teeth and mouth cleaned. Dr. D said things looked very good in 'there'.
And Dr. D will be making some temporary teeth to fill in the ones that were taken before radiation/chemo treatments. The permanent ones will take longer to make than 30 days.
Rich is pretty excited to 'get' some teeth back!
Watch out world, he will be chasing after steak again!
His throat is still very painful but compared to some cases, I guess he is doing quite well and healing quite fast.
It seems like a miracle ... we don't have an appointment now for nearly a week and a half!
I feel like I could drive to the VA hospital with my eyes closed.
Total mileage for driving back and forth for treatments and for other appointments since April 28th?
6, 250 miles.
Whew.
I return to work at midnight tonight.
So things are returning to normal, something I wasn't sure would happen at the end of April.
So far, so good.
Friday, June 26, 2015
Appointments & Follow Ups
Finally the appointments and follow ups are slowing down. As we get away from the last day of radiation, our appointments start to stretch out further.
The speech folks gave us some interesting information, they told Rich that he had to continue to do his swallowing exercises for the rest of his life.
Radiation stiffens the inner workings of the throat. It is called fibrosis of the throat.
We learn something every day don't we?
The throat still burns but the eating and swallowing are improving.
Rich's big concern was his lack of energy and stamina.
Dr. Rahim reminded Rich that he had been 'de-conditioned' by the weeks of radiation and chemotherapy and the stays in the hospital. COPD and this hot humid weather made re-conditioning a slower process. I like Dr. Rahim, he is a thoughtful caring person and doctor.
He has a wonderful smile and never comes off presumptuous.
We won't see him until August now! Two months before we have any follow up of course if there are any questions or problems we are free to call.
I am happy to say he is slowly but surely coming around to feeling more like himself.
I'm doing a bit better too. I still lay awake and worry about him at night. The TIA and the Anapylatic Shock still play on an endless reel inside my head.
Staying busy helps.
I will be returning to work on July 4th and I think that first weekend will give us both an idea as to how much better he is feeling.
I am still the chore-master. And I still do some things for him that he used to do for himself.
All in all, that is about it to report.
He has to give himself time to get back into condition. My cautious worry is how does his other health issues factor into healing?
I guess we shall see.
The speech folks gave us some interesting information, they told Rich that he had to continue to do his swallowing exercises for the rest of his life.
Radiation stiffens the inner workings of the throat. It is called fibrosis of the throat.
We learn something every day don't we?
The throat still burns but the eating and swallowing are improving.
Rich's big concern was his lack of energy and stamina.
Dr. Rahim reminded Rich that he had been 'de-conditioned' by the weeks of radiation and chemotherapy and the stays in the hospital. COPD and this hot humid weather made re-conditioning a slower process. I like Dr. Rahim, he is a thoughtful caring person and doctor.
He has a wonderful smile and never comes off presumptuous.
We won't see him until August now! Two months before we have any follow up of course if there are any questions or problems we are free to call.
I am happy to say he is slowly but surely coming around to feeling more like himself.
I'm doing a bit better too. I still lay awake and worry about him at night. The TIA and the Anapylatic Shock still play on an endless reel inside my head.
Staying busy helps.
I will be returning to work on July 4th and I think that first weekend will give us both an idea as to how much better he is feeling.
I am still the chore-master. And I still do some things for him that he used to do for himself.
All in all, that is about it to report.
He has to give himself time to get back into condition. My cautious worry is how does his other health issues factor into healing?
I guess we shall see.
Monday, June 22, 2015
One week later
Radiation treatment has been over for one week and Rich expected to bounce back to normal within days.
He was told that he had more recovery time and that the radiation was to drag him down with fatigue for at least 4 to 6 more weeks and some people...well, it took longer.
Rich is not patient in this area.
He decided to mow the yard. This involved cleaning the mower deck, cleaning up the blades, and other things in preparation.
By noon he was exhausted. I suggested a nap.
He did get up and get the yard mowed around the house before he parked the mower. I could tell by the way he walked that he was done in.
He'd been cautioned not to overdo it. But he is also the type of person who will push it to the limit and then pay for it later.
This week has seen up and down days with energy and throat pain.
However he is eating better and doesn't seem to be having the issues he was having last week with water going down the wrong way.
He coughs up nasty mucositis which is a side effect of radiation. He says that his throat hurts worse in some ways than it did when he was in treatment.
Patience little one...I want to say. Patience.
I must admit, if I were in his place, I'd be pushing too.
His neck is starting to heal up where the skin had broken down and was opening up. I think he'll probably scar in one area, but we've decided to call it a "Badge" for what he has been through.
A very kind friend of ours delivered hay today and so we are freshly supplied in that area.
Rich hasn't felt well enough to help with the chores.
I think balance is still an issue when he is tired.
Tomorrow we have an appointment with Speech. I'm not sure but this may be the appointment where they check his swallowing abilities and how damaged his epiglottis is.
Then we meet with Dr. Rahim the chemo oncologist.
We enter the after treatment phase now. The follow up appointments and tests.
No PET scan for at least three months to see if they 'got it all'. I probably worry about that aspect a bit more than I should.
So to sum it up. 7 days after the end of radiation, things are slightly better in some areas and improvement is slow.
He was told that he had more recovery time and that the radiation was to drag him down with fatigue for at least 4 to 6 more weeks and some people...well, it took longer.
Rich is not patient in this area.
He decided to mow the yard. This involved cleaning the mower deck, cleaning up the blades, and other things in preparation.
By noon he was exhausted. I suggested a nap.
He did get up and get the yard mowed around the house before he parked the mower. I could tell by the way he walked that he was done in.
He'd been cautioned not to overdo it. But he is also the type of person who will push it to the limit and then pay for it later.
This week has seen up and down days with energy and throat pain.
However he is eating better and doesn't seem to be having the issues he was having last week with water going down the wrong way.
He coughs up nasty mucositis which is a side effect of radiation. He says that his throat hurts worse in some ways than it did when he was in treatment.
Patience little one...I want to say. Patience.
I must admit, if I were in his place, I'd be pushing too.
His neck is starting to heal up where the skin had broken down and was opening up. I think he'll probably scar in one area, but we've decided to call it a "Badge" for what he has been through.
A very kind friend of ours delivered hay today and so we are freshly supplied in that area.
Rich hasn't felt well enough to help with the chores.
I think balance is still an issue when he is tired.
Tomorrow we have an appointment with Speech. I'm not sure but this may be the appointment where they check his swallowing abilities and how damaged his epiglottis is.
Then we meet with Dr. Rahim the chemo oncologist.
We enter the after treatment phase now. The follow up appointments and tests.
No PET scan for at least three months to see if they 'got it all'. I probably worry about that aspect a bit more than I should.
So to sum it up. 7 days after the end of radiation, things are slightly better in some areas and improvement is slow.
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