Over all Rich's health physically since the knee surgery to remove the nasty patella bursa, he has regained mobility and some strength in that knee. We have been seeing PT twice to three times a week and it is obvious to me that he needs to be going back to Pulmonary Therapy.
I try to bribe him into moving about and doing things. But he is focused more on either sitting at the kitchen table and staring out the window [when I inquire as to what he is looking at he seems to come back into the present world and blink...his answer? "Nothing."]
Part of this is the damage done to his brain from the stroke in 2017.
One of the very hard things to separate out with all of Rich's past history of PTSD and MDD is the lack of motivation which was there pre stroke but is now much worse.
In fact the medical field studies Apathy and Hypersomnia. Both of these neurological issues can happen after a stroke in the front part of the brain. Let's toss in some other medical issues and the patient becomes very 'complicated' as the doctor who did the knee surgery said to us.
Is it depression? Is it PTSD? Is it neurological? Bradycardia? COPD? Is it the Pulmonary Emboli? Painful bursa? Is it imagined? Is it real? What is it?
Hypersomnia is just a fancy word for being tired all of the time. Rich had this during his last bought of severe depression. He keeps telling Dr. Schiffman that he wants to feel energetic and motivated yet he just feels tired and can't seem to get out and do anything.
Since I live with Rich daily, I see little bits and pieces that the doctors don't see.
Going to Culvers last week, I handed him an empty soda cup so he could get his Pepsi. I paid and then walked over to where he was at. He stood in front of the soda machine and held the cup.
"I should know this," he said. There were people waiting so I said, "Let me."
I took the cup and filled it and handed it to him. He shook his head.
When we sat down to eat he mentioned the soda incident and told me that it really bothered him.
There are small things that happen and finally we got into a discussion one morning.
He said he was 'Dizzy'. He'd said that often to Dr. Schiffman and to his therapists who took B/P, 02 readings and came up with normal. It flummoxed most of the doctors.
So I asked Rich.
"Tell me about Dizzy. Is the room spinning?"
No.
"Do you feel like you are going to barf?"
No.
"Does it feel like you did when you had Brain Fog from chemotherapy?"
He glanced at me.
Yes! It feels like I am not connecting! I don't like it.
"Your brain suffered a pretty bad injury in 2017. So it has troubles on some days making sense of everything."
I don't like it.
I feel like I am watching a slow motion crash happening one very infinitesimal step at a time. However. At least I am here for that journey right now. I can be a part of it with him.
There will be days of heartache and frustration,
anger and resentment...
laughter and love
joy and sorrow.
One day at a time.
Showing posts with label after cancer. Show all posts
Showing posts with label after cancer. Show all posts
Tuesday, October 8, 2019
Saturday, July 21, 2018
Depression 101
We met with Dr. Lindsey, she is young bright and a psychologist. She is doing her stint at the VA Hospital.
She asks Rich if he knows why he is there? He squints his eyes and seems to think. I've noticed over the years that the eye squinting comes just before his answer which is:
"I want to feel better. I just want to feel better. I feel like I am dying bit by bit."
This has become his new mantra of sorts. Anyone asks him how he is or how he is feeling, that is his answer. As I watch the doctor glance at him and scribble notes, I realize that the words are slightly different but the answers have been consistently the same for all of the years I've known Rich.
Lindsey asks him if he knows what causes him to feel this way.
"I don't know. I just want to feel better. I am tired of feeling like this."
She looks at him and me and then prompts him by asking if he read the letter from the neuro-psychologists. He shrugs. Their letter with multiple diagnosis of his medical issues weren't of interest to him. I let her know that but tell her that I did in fact read it to him.
Rich shrugs.
"Rich do you know that you have also been diagnosed with Major Depressive Disorder?"
Another alphabet diagnosis I think. In medical shorthand MDD. A light goes on somewhere in the back of my mind. And for some reason I am not surprised at this diagnosis. It makes sense, I felt his meds were starting to fail him, but as always his re-occurrences of depression always have a way of sneaking up on us.
So it was official. MDD. This explained quite a bit.
Lindsey continues, "So Rich I am here to help you figure out how to feel better and break this depression cycle."
He looks at her and squints again. "I have no idea how you think you can do that."
She doesn't get discouraged. Good for her, I think. Lindsey begins to explain the methods of getting a person out of major depression. She asks questions and he haltingly answers.
It almost seems as if he doesn't want to get better. But then I am not surprised as this is the depression stacked on top of COPD, and PTSD along with stroke and the some level of dementia or cognitive dysfunction. I wonder how in the hell are the doctors and I are going to pull him up and out of this.
Lindsey draws a map for Rich to explain what she is talking about.
"You want to feel better," she says, "this has to do with your thoughts and feelings, we need to help them. One of the ways is to get out and do something. Get away from the bed and be more active."
He grimaces. "I can't. I hit that wall and if I don't lay down, I'll tip over."
She thinks a moment and then asks, "Are you a fall risk?"
"No, I am fine. I just get so tired." I can see by his expression that he doesn't believe her.
Lindsey draws out something on paper and shows it to him.
[I took the liberty of going into Photoshop and making the following graphic to mimic her hand drawing. I chose bright colors because I always want to feel hopeful]
"Your behavior effects your thoughts. If you start here and get moving, doing something different that you used to enjoy then your feelings will improve and your thoughts will improve."
He stares at the paper and I know he doesn't see it.
The discussion goes on for a while. I suggest fishing. Rich says he 'can't'. What if he gets short of breath? I reply we'll have 02 along. What if he gets tired? We have seats in the Subaru that recline. What if he can't ... make it to the car? We bring fold up chairs.
Lindsey uses encouragement and Rich is given an assignment to go fishing. [Now looking at my calendar and the weather, I see no time for fishing.]
Then Lindsey does something surprising.
She turns to me and asks, "How are you doing?"
"Honestly? Some days I have no idea. I get frustrated, short tempered, ..."
"What sort of support do you have?"
"I have a neighbor who will listen. There is a group that meets in Viroqua once a month but generally I have appointments that day and it is during the time I need to be doing chores."
"Would you consider counseling?"
"Can't afford it now that I quit work to take care of Rich." I state.
Lindsey reads her notes and then says that the VA will provide those veteran spouses with care when the veteran is 100%. I am surprised, I knew about that but never had anyone at the VA approach it.
Lindsey says she will look into it. I believe she will.
Our ride back from the VA is long and I am tired after 3 appointments. Rich uses his 02 while he sleeps in the passenger seat. My mind mulls over the depression issues and how can I work to get him to 'move'.
When we get home I tell him that he will feed the two donkeys every day like he used to.
He fires back at me: What if I can't make it? What if I can't walk there and back?
Me: Then I will sit with you in the dirt until you can make it.
Him: What if I get out of breath?
Me: I'll bring you oxygen.
Him: Oh like this is going to cure me huh?
Me: Nope. But if you keep laying in bed all day long and never moving, you will make yourself worse, your heart will fail, your lungs will fail, and your mind will fail. Move it or lose it. You tell your mom to move, you need to take your own advice.
Him: I'm going to bed.
Yesterday though, I stood my ground and he did walk to the shed and get flakes of hay to feed Thor and Bob. It took an extra hour or so of my day. But it got done.
Depression is an ugly thing.
She asks Rich if he knows why he is there? He squints his eyes and seems to think. I've noticed over the years that the eye squinting comes just before his answer which is:
"I want to feel better. I just want to feel better. I feel like I am dying bit by bit."
This has become his new mantra of sorts. Anyone asks him how he is or how he is feeling, that is his answer. As I watch the doctor glance at him and scribble notes, I realize that the words are slightly different but the answers have been consistently the same for all of the years I've known Rich.
Lindsey asks him if he knows what causes him to feel this way.
"I don't know. I just want to feel better. I am tired of feeling like this."
She looks at him and me and then prompts him by asking if he read the letter from the neuro-psychologists. He shrugs. Their letter with multiple diagnosis of his medical issues weren't of interest to him. I let her know that but tell her that I did in fact read it to him.
Rich shrugs.
"Rich do you know that you have also been diagnosed with Major Depressive Disorder?"
Another alphabet diagnosis I think. In medical shorthand MDD. A light goes on somewhere in the back of my mind. And for some reason I am not surprised at this diagnosis. It makes sense, I felt his meds were starting to fail him, but as always his re-occurrences of depression always have a way of sneaking up on us.
So it was official. MDD. This explained quite a bit.
Lindsey continues, "So Rich I am here to help you figure out how to feel better and break this depression cycle."
He looks at her and squints again. "I have no idea how you think you can do that."
She doesn't get discouraged. Good for her, I think. Lindsey begins to explain the methods of getting a person out of major depression. She asks questions and he haltingly answers.
It almost seems as if he doesn't want to get better. But then I am not surprised as this is the depression stacked on top of COPD, and PTSD along with stroke and the some level of dementia or cognitive dysfunction. I wonder how in the hell are the doctors and I are going to pull him up and out of this.
Lindsey draws a map for Rich to explain what she is talking about.
"You want to feel better," she says, "this has to do with your thoughts and feelings, we need to help them. One of the ways is to get out and do something. Get away from the bed and be more active."
He grimaces. "I can't. I hit that wall and if I don't lay down, I'll tip over."
She thinks a moment and then asks, "Are you a fall risk?"
"No, I am fine. I just get so tired." I can see by his expression that he doesn't believe her.
Lindsey draws out something on paper and shows it to him.
[I took the liberty of going into Photoshop and making the following graphic to mimic her hand drawing. I chose bright colors because I always want to feel hopeful]
"Your behavior effects your thoughts. If you start here and get moving, doing something different that you used to enjoy then your feelings will improve and your thoughts will improve."
He stares at the paper and I know he doesn't see it.
The discussion goes on for a while. I suggest fishing. Rich says he 'can't'. What if he gets short of breath? I reply we'll have 02 along. What if he gets tired? We have seats in the Subaru that recline. What if he can't ... make it to the car? We bring fold up chairs.
Lindsey uses encouragement and Rich is given an assignment to go fishing. [Now looking at my calendar and the weather, I see no time for fishing.]
Then Lindsey does something surprising.
She turns to me and asks, "How are you doing?"
"Honestly? Some days I have no idea. I get frustrated, short tempered, ..."
"What sort of support do you have?"
"I have a neighbor who will listen. There is a group that meets in Viroqua once a month but generally I have appointments that day and it is during the time I need to be doing chores."
"Would you consider counseling?"
"Can't afford it now that I quit work to take care of Rich." I state.
Lindsey reads her notes and then says that the VA will provide those veteran spouses with care when the veteran is 100%. I am surprised, I knew about that but never had anyone at the VA approach it.
Lindsey says she will look into it. I believe she will.
Our ride back from the VA is long and I am tired after 3 appointments. Rich uses his 02 while he sleeps in the passenger seat. My mind mulls over the depression issues and how can I work to get him to 'move'.
When we get home I tell him that he will feed the two donkeys every day like he used to.
He fires back at me: What if I can't make it? What if I can't walk there and back?
Me: Then I will sit with you in the dirt until you can make it.
Him: What if I get out of breath?
Me: I'll bring you oxygen.
Him: Oh like this is going to cure me huh?
Me: Nope. But if you keep laying in bed all day long and never moving, you will make yourself worse, your heart will fail, your lungs will fail, and your mind will fail. Move it or lose it. You tell your mom to move, you need to take your own advice.
Him: I'm going to bed.
Yesterday though, I stood my ground and he did walk to the shed and get flakes of hay to feed Thor and Bob. It took an extra hour or so of my day. But it got done.
Depression is an ugly thing.
Tuesday, January 16, 2018
No Easy Answers
We've fought through throat cancer treatments and recovery. We seemed to do so well after that until the stroke came to strike out hard.
Well, the recovery physically from the stroke was amazing. Rich could walk, and move with no after effects. His speech had issues but most people can eventually get what he is trying to convey.
Then winter came on. Typically winter is his most difficult time anyway. Mentally it is draining because the weather is cold and the days are dreary. However COPD plays a huge factor in this too.
Too cold? He can't breath outside. The cold air sends his bronchial tubes into spasms and it feels...well. No other word to describe it, like suffocation. Even with something over his mouth periodically to warm the air. Breathlessness or dyspnea is not a nice thing to feel.
During the extreme cold days I have done the chores by myself. Even I have a bit of trouble while hauling a sled full of hay up the where the two of the bulls are kept. It is a steep walk in the summer and the winter. Extremely hot humid air and extremely dry cold air are enemies of getting your breath.
Depression has set in. It is like having a huge Black Cloak hanging over his head. Most mornings I pour his coffee when he gets up and give him a kiss. The he sits and stares out the window. The difference now compared to a year ago is the blank look of nobody there when I glance at him. I ask what he is thinking and he blinks as if the sound of my voice brought him back from....what he describes as 'No Where'.
He visits No Where quite often these days.
And when we do converse he talks about how he is no longer of any use, he has no purpose. If he weather is good enough for him to venture out and help with the morning chores, he gets dressed and goes about the morning routine.
When we come back in, he sits and stares off into No Where. Eventually he says that he *is not worth a damn* and gets up. He walks to the bedroom and goes to bed asking me to wake him up when it is time to water the stock.
Tremors. I'm not sure what to think of them. His father had what was called "Essential Tremors". Rich has had them for a long time but they were a problem. Now they are in a very severe way. He can't carry a coffee cup across the room without spilling a trail of coffee. He feels terrible about it.
As his COPD meds are increased, I see a direct increase in the tremors. I looked up the causes of ET and found that COPD meds contribute to it. What a mean thing. COPD requires certain meds which in turn can contribute to worsening of the ET.
NIH had articles relating to the fact the ET are familial. In other words, it can run in the family. Rich's father had ET, Rich's mother has ET. It affected his fathers voice, it affects his mother's voice. At the young age of 68, it is affecting most actions that Rich takes along with his voice at times now also.
COPD unto itself is an insidious disease that is not curable. The doctors tell you to stay active. Simple to do if you can breath.
Rich does stay as active as he can.
But the viscious downward spiral of COPD, the results of the stroke, the tremors, and feeling lost all add to a fairly significant winter depression.
He feels somewhat hopeless and helpless.
His only escape is to go sleep. And sleeping most of the day and the night do not help any of his health issues.
I find it interesting that the doctors say: You are doing so well! You made such a miraculous recovery from all the things that have been thrown your way!
To this man, each fight he's gone through has taken away a part of what he wanted to be and defined himself to be.
One counselor asked him to consider the fact that this would be his new normal.
I understood where she was going. Accept this and move forward.
I may be the type of person who can do that. But he can't.
He has always been a 'fixer'. If there was something that should be fixed, he'd fix it. Replace brakes? Muffler? Build a new and improved dog house? Insulate a water tank? All these projects are partially started and now sit gathering dust.
He can't fix himself. He feels if he could understand exactly what went wrong, he could fix it.
In the past two weeks he has had other slight incidents that lead me to believe that he may be having a TIA. It happened quickly and was gone. Poof.
Before I get told to rush him to the ER. I have. The results have not been exactly stellar.
To be fair, the local hospital did do a good job in making sure that he was transported to the nearest trauma center. But only on orders from the VA.
Is there an easy answer to all of this? No.
Of course not.
Well, the recovery physically from the stroke was amazing. Rich could walk, and move with no after effects. His speech had issues but most people can eventually get what he is trying to convey.
Then winter came on. Typically winter is his most difficult time anyway. Mentally it is draining because the weather is cold and the days are dreary. However COPD plays a huge factor in this too.
Too cold? He can't breath outside. The cold air sends his bronchial tubes into spasms and it feels...well. No other word to describe it, like suffocation. Even with something over his mouth periodically to warm the air. Breathlessness or dyspnea is not a nice thing to feel.
During the extreme cold days I have done the chores by myself. Even I have a bit of trouble while hauling a sled full of hay up the where the two of the bulls are kept. It is a steep walk in the summer and the winter. Extremely hot humid air and extremely dry cold air are enemies of getting your breath.
Depression has set in. It is like having a huge Black Cloak hanging over his head. Most mornings I pour his coffee when he gets up and give him a kiss. The he sits and stares out the window. The difference now compared to a year ago is the blank look of nobody there when I glance at him. I ask what he is thinking and he blinks as if the sound of my voice brought him back from....what he describes as 'No Where'.
He visits No Where quite often these days.
And when we do converse he talks about how he is no longer of any use, he has no purpose. If he weather is good enough for him to venture out and help with the morning chores, he gets dressed and goes about the morning routine.
When we come back in, he sits and stares off into No Where. Eventually he says that he *is not worth a damn* and gets up. He walks to the bedroom and goes to bed asking me to wake him up when it is time to water the stock.
Tremors. I'm not sure what to think of them. His father had what was called "Essential Tremors". Rich has had them for a long time but they were a problem. Now they are in a very severe way. He can't carry a coffee cup across the room without spilling a trail of coffee. He feels terrible about it.
As his COPD meds are increased, I see a direct increase in the tremors. I looked up the causes of ET and found that COPD meds contribute to it. What a mean thing. COPD requires certain meds which in turn can contribute to worsening of the ET.
NIH had articles relating to the fact the ET are familial. In other words, it can run in the family. Rich's father had ET, Rich's mother has ET. It affected his fathers voice, it affects his mother's voice. At the young age of 68, it is affecting most actions that Rich takes along with his voice at times now also.
COPD unto itself is an insidious disease that is not curable. The doctors tell you to stay active. Simple to do if you can breath.
Rich does stay as active as he can.
But the viscious downward spiral of COPD, the results of the stroke, the tremors, and feeling lost all add to a fairly significant winter depression.
He feels somewhat hopeless and helpless.
His only escape is to go sleep. And sleeping most of the day and the night do not help any of his health issues.
I find it interesting that the doctors say: You are doing so well! You made such a miraculous recovery from all the things that have been thrown your way!
To this man, each fight he's gone through has taken away a part of what he wanted to be and defined himself to be.
One counselor asked him to consider the fact that this would be his new normal.
I understood where she was going. Accept this and move forward.
I may be the type of person who can do that. But he can't.
He has always been a 'fixer'. If there was something that should be fixed, he'd fix it. Replace brakes? Muffler? Build a new and improved dog house? Insulate a water tank? All these projects are partially started and now sit gathering dust.
He can't fix himself. He feels if he could understand exactly what went wrong, he could fix it.
In the past two weeks he has had other slight incidents that lead me to believe that he may be having a TIA. It happened quickly and was gone. Poof.
Before I get told to rush him to the ER. I have. The results have not been exactly stellar.
To be fair, the local hospital did do a good job in making sure that he was transported to the nearest trauma center. But only on orders from the VA.
Is there an easy answer to all of this? No.
Of course not.
Sunday, December 17, 2017
The End Game
Rich had just completed one of his last check ups with the oncology department.
Let's jump forward to present date.
12/17/17.
On May 6th Rich had a stroke.
I wrote about it afterwards on May 12th.
I kept up with updating things and how I resigned from work 3 days after the stroke to stay home and assist with my husband's recovery.
He is an amazing man.
Cancer was big and scary. And it still hangs over our heads like the Sword of Damocles. Will it come back? Can it come back? Will we fight with it? Well, the answer to the last question is no. The other answers are unknown. Who knows what is in the future for us right?
I am now an unemployed caregiver. That is fine, everyone says how nice it is to be 'retired'. I'm not sure retired is the proper term at all.
Caregiver: A family member or paid help that looks after a sick or disabled child or elderly person.
Retired: Ceasing work. Having finished one's active working life.
I think unemployed caregiver is the proper term. Let's add. Farm help, chore person, house keeper, chief cook, and bottle washer. Appointment maker and so on.
Actually the whole process has been fairly good. Financially things are a bit tight, but all of our years of being frugal has paid off. We owe nothing on our vehicles and the only item left is the remodel loan.
I had felt that I'd be able to return to some sort of work by now. But that isn't happening.
Rich's COPD is not getting better. I don't know if it is related to the stroke or just the insidious disease marching down its timeline of destruction.
I know that sounds gloomy, but I am being pragmatic. It has always been the 'elephant' in the room. There is no cure and the end result is death.
So what is our next Long Road?
Our next long journey will be dealing with the after effects of the stroke, the continuing task of living with COPD and how we end up dealing with our lives until the end.
One thing we are not afraid of to discuss in our little house is death. It is there and it will be the end game for all of us.
So I will continue to write things here regarding how we deal with health issues and the end of life.
Wednesday, February 24, 2016
Appointments and February Blahs
Rich still feels as if he has no energy and he is not really gaining any weight back. This of course is a hard time of the year for him anyway.
Right now he is having the doldrums. The overcast days have got him in a down mood. Well, as he said. "I'm depressed. I'm not getting better, I'm not getting my energy back."
When he is like this, there is no discussions to be had. One just has to listen. I can't point out to him that he is still alive and that he did have a great day out on Saturday when he went to an auction with the neighbor.
These things don't really matter much to him at this moment. It is how he feels internally what matters. He has stopped doing Tai Chi. I tried to get him to do it again. But he just gives me the look.
He is supposed to be doing physical therapy but he has dropped the ball on that too.
I think part of it is that it is so muddy that doing anything outside right now is a huge chore. When it was so cold two weeks ago, he had some trouble with doing things outside and breathing.
He has COPD and I think that the Throat Cancer and treatments may have made it worse. That makes doing daily things a lot tougher. And unfortunately he feels that he should somehow be much better.
I have pointed out to him that he actually is doing more than he was pre-cancer. But he can't see it.
I know once the winter blahs go away and the weather gets nicer, he will go into his 'spring' mode. At least that is what I am hoping.
We go for the CT scan and meet up with the Eye Doctor tomorrow. I will ask the doctor how long of a recovery time he'll have with the eye surgery. Rich is under the impression that he will be back at things the next day.
I am trying to be very positive for Rich and sometimes getting the dark look of gloom doesn't make it easy.
We take this time of year one moment at a time.
One foot in front of the other.
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
Another 13th Visit
Just when you thought it was safe to go back into the waters...
Rich went to his Dental appointment as was scheduled. During our short two visits to Palliative Care, Rich had complained about 'floaters' in his eyes.
Dr. Loconte didn't give it a thought, they seemed more concerned about his overall well being. Let's just say that Palliative Care is a good thing, but it didn't work out for Rich very well.
After his Dental appoinment, Rich walked over to see the Eye Clinic. He thought he'd see if he could get an appointment to see an eye doctor about the floaters. They seemed to really bother him quite a bit.
As luck would have it, an appointment opened up and 'could he please wait for the doctor?' Rich agreed, it was rare that you ever got in on a same day at any clinic at the VA.
The UW eye doctor showed up and listened to Rich's complaints. Rich's eyes were dilated and examined. He told Rich about the floaters. If they got worse or he saw flashes of light, he was to 'get in' immediately.
Then he asked Rich if he'd had any family history of skin cancer.
I think that took Rich by total surprise.
"Nope."
The doctor said that he was scheduling Rich for a biopsy in a few weeks as he had skin cancer under his eyes. These areas would be removed as cancer near the eyes was not a good thing and they didn't want it to spread to his sinuses nor his eyes. He told Rich what kind of cancer it was called and that ... he the doctor was 99% certain that these spots were cancer.
And by the way his drooping eyelids would require surgery as they were blocking at least 30% of his vision.
When Rich got home, he walked in the door and said "I saw an eye doctor today, they are going to do surgery on the lids so I can see better and did you know I have cancer under my eyes?" He paused and thought a moment.
"I think he called it 'Eye Cancer Lymphodemia'."
I shook my head and said, "I doubt that is what it was called!"
Then I did some research and found the spots that Rich was talking about. Indeed when I compared them to Basil Cell Carcinoma 'on the face and below the eye' I was surprised.
Indeed I could see it plainly.
And we wouldn't have had a clue except for a cancellation on the 13th.
Now we have another wait and see. Another cancer diagnosis that happened on the 13th of all dates.
However this cancer...if it is Basil Cell Carcinoma and it has not spread deeply into the tissues, has a 99% survival rate of 5 years or better.
And so it goes.
Rich went to his Dental appointment as was scheduled. During our short two visits to Palliative Care, Rich had complained about 'floaters' in his eyes.
Dr. Loconte didn't give it a thought, they seemed more concerned about his overall well being. Let's just say that Palliative Care is a good thing, but it didn't work out for Rich very well.
After his Dental appoinment, Rich walked over to see the Eye Clinic. He thought he'd see if he could get an appointment to see an eye doctor about the floaters. They seemed to really bother him quite a bit.
As luck would have it, an appointment opened up and 'could he please wait for the doctor?' Rich agreed, it was rare that you ever got in on a same day at any clinic at the VA.
The UW eye doctor showed up and listened to Rich's complaints. Rich's eyes were dilated and examined. He told Rich about the floaters. If they got worse or he saw flashes of light, he was to 'get in' immediately.
Then he asked Rich if he'd had any family history of skin cancer.
I think that took Rich by total surprise.
"Nope."
The doctor said that he was scheduling Rich for a biopsy in a few weeks as he had skin cancer under his eyes. These areas would be removed as cancer near the eyes was not a good thing and they didn't want it to spread to his sinuses nor his eyes. He told Rich what kind of cancer it was called and that ... he the doctor was 99% certain that these spots were cancer.
And by the way his drooping eyelids would require surgery as they were blocking at least 30% of his vision.
When Rich got home, he walked in the door and said "I saw an eye doctor today, they are going to do surgery on the lids so I can see better and did you know I have cancer under my eyes?" He paused and thought a moment.
"I think he called it 'Eye Cancer Lymphodemia'."
I shook my head and said, "I doubt that is what it was called!"
Then I did some research and found the spots that Rich was talking about. Indeed when I compared them to Basil Cell Carcinoma 'on the face and below the eye' I was surprised.
Indeed I could see it plainly.
And we wouldn't have had a clue except for a cancellation on the 13th.
Now we have another wait and see. Another cancer diagnosis that happened on the 13th of all dates.
However this cancer...if it is Basil Cell Carcinoma and it has not spread deeply into the tissues, has a 99% survival rate of 5 years or better.
And so it goes.
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.
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