The phone rang in the car...well I am surely never going to get used to having a cell phone that is connected via bluetooth to my vehicle...
Anyway we answered it and Rich talked to the doctor who did the prelim of his CT scan.
The doctor said "No evidence of cancer or a tumor." Although the scan did show evidence of a stroke that had probably occurred a few months ago.
If you need a reminder you can see the blog titled 911~what is your emergency?
I'm pretty sure this is the stroke they are talking about. So there was damage to the brain but nothing that showed up right away.
Let us not look a gift horse in the mouth.
It felt like another elephant had been removed from our shoulders.
So as of yesterday Rich is free of cancer. He kicked it in the butt with a lot of help from the Carbone Cancer Center and the VA.
Now we look forward and not backward.
Onward.
Showing posts with label throat cancer. Show all posts
Showing posts with label throat cancer. Show all posts
Friday, September 25, 2015
Thursday, September 24, 2015
Nervous as ... well nervous CT Brain Scan
To say that the both of us are not on edge with waiting for the Brain CT Scan/with contrast is a misnomer.
Both of us are anxious.
Rich and I are both a bit short tempered and on edge. Both of us are tired and feel as though we are being dragged along again with something horrid hanging over our heads.
Of course he says he isn't. But I know better.
Yesterday we went fishing for a little while. While Rich fished, I walked around taking some photographs and then sat down on the steep bank, content just to watch Rich and talk with him.
The conversation was about anything and everything except the upcoming scan.
Yesterday I finally got all the 'ducks in a row' I think for the scan itself.
Get the required blood test at the VA, visit our VA appointment, then pick up the results to hand carry to the UW for the lab tech that is doing the CT.
Since the CT is being done so late in the day, apparently they will call with the results?
I don't know. I would like the chance to look the doctor in the eyes while he discusses the scan results.
So another day of unknown will occur today.
Hurry up and get 'tested'!!! Oh wait. We'll get you the results...soon.
But I have to think positive as the scan results for throat cancer was clear.
Oh and the fish were not biting. But I guess fishing is good even when the fish are not co-operative. It gets you out into the fresh air and your mind is on something else.
Friday, September 18, 2015
The Day After the Pet Scan Uh-ohhh
Dr. Witek called Rich the day after the PET scan.
"Our techs were going through your PET scan again and I need to know Rich if you've been having trouble with your eyesight?"
Rich said yes, but we of course hadn't linked any vision changes with anything other than the possibility of normal aging eyes. The eye doctor had found cataracts too. We'd told Dr. Morris about that the day earlier and he said that radiation could increase the time frame for cataracts if a person were to get them.
Apparently 'they' found 'something' in the occipital lobe of his brain. The something was something they wanted to identify very soon. Dr. Witek had put in an order for a CT scan of the area. The 'techs' had wanted an MRI but Dr. Witek opted for the CT scan as Rich is very claustrophobic.
There was a knee jerk reaction in our household. Our good news had turned into a 'Something'. An unknown.
We had to go to the VA for Dental, Swallow Clinic, and Mental Health yesterday. Rich's Dentist did prep work for putting in some teeth to replace those he lost before the radiation therapy started. Since the Dentist can't place a post in the jaw for partials, he had to make a work around. Radiation in throat and head makes the jaw bone brittle and no teeth can be pulled for about two years without causing huge issues.
Our appointment with Dr. Faris was perhaps the best appointment of the day. Dr. Faris deserves a nod and some applause as he probably went way past his quitting time to hear Rich out.
He let Rich talk on and on about the Old Days and how he could do anything and everything. His main complaint is of course how terrible things are for him because he has no energy. After a long while Rich said out loud, "Maybe I am just getting old and I can't do the things I used to."
There it was, out in the open at least in my mind. He is not 19 anymore nor 10 foot tall and bullet proof. He admitted it.
I think it can be very difficult to face the fact that your life is not as it once was.
Dr. Feris discussed Palliative Care for Rich and he actually considered it. Palliative Care is not Hospice but is defined as special medical for people with serious illnesses. It involves working with a special medical team that focuses on providing the patients with some relief from symptoms and stress from serious illness. The goal is to improve the quality of life for both the patient and the family of the patient.
I asked Rich on the ride home why he was always very negative when people asked how he was. He didn't really have much of an answer. I'm of the belief that if you always say you are not well, you will be unwell.
As for the Uh-Ohhh? It is there and for the moment I am going to cope with it in the only manner I can. Hope for the best, prepare for the worst, and don't freak out. No knowledge is more fearful than having knowledge.
I know it is weighing heavily on Rich's mind. But he told Dr. Feris yesterday that he didn't care, he was not afraid of it after all he has gone through.
We can all put on brave fronts in front of other people can we not?
"Our techs were going through your PET scan again and I need to know Rich if you've been having trouble with your eyesight?"
Rich said yes, but we of course hadn't linked any vision changes with anything other than the possibility of normal aging eyes. The eye doctor had found cataracts too. We'd told Dr. Morris about that the day earlier and he said that radiation could increase the time frame for cataracts if a person were to get them.
Apparently 'they' found 'something' in the occipital lobe of his brain. The something was something they wanted to identify very soon. Dr. Witek had put in an order for a CT scan of the area. The 'techs' had wanted an MRI but Dr. Witek opted for the CT scan as Rich is very claustrophobic.
There was a knee jerk reaction in our household. Our good news had turned into a 'Something'. An unknown.
We had to go to the VA for Dental, Swallow Clinic, and Mental Health yesterday. Rich's Dentist did prep work for putting in some teeth to replace those he lost before the radiation therapy started. Since the Dentist can't place a post in the jaw for partials, he had to make a work around. Radiation in throat and head makes the jaw bone brittle and no teeth can be pulled for about two years without causing huge issues.
Our appointment with Dr. Faris was perhaps the best appointment of the day. Dr. Faris deserves a nod and some applause as he probably went way past his quitting time to hear Rich out.
He let Rich talk on and on about the Old Days and how he could do anything and everything. His main complaint is of course how terrible things are for him because he has no energy. After a long while Rich said out loud, "Maybe I am just getting old and I can't do the things I used to."
There it was, out in the open at least in my mind. He is not 19 anymore nor 10 foot tall and bullet proof. He admitted it.
I think it can be very difficult to face the fact that your life is not as it once was.
Dr. Feris discussed Palliative Care for Rich and he actually considered it. Palliative Care is not Hospice but is defined as special medical for people with serious illnesses. It involves working with a special medical team that focuses on providing the patients with some relief from symptoms and stress from serious illness. The goal is to improve the quality of life for both the patient and the family of the patient.
I asked Rich on the ride home why he was always very negative when people asked how he was. He didn't really have much of an answer. I'm of the belief that if you always say you are not well, you will be unwell.
As for the Uh-Ohhh? It is there and for the moment I am going to cope with it in the only manner I can. Hope for the best, prepare for the worst, and don't freak out. No knowledge is more fearful than having knowledge.
I know it is weighing heavily on Rich's mind. But he told Dr. Feris yesterday that he didn't care, he was not afraid of it after all he has gone through.
We can all put on brave fronts in front of other people can we not?
The PET Scan
This PET Scan seemed so far off in the distant future when it was scheduled on June 15th.
Dr. Witek was pretty confident that he and his team plus the team at the VA had 'nailed' the throat cancer.
We all left the office that day with a good attitude.
Then came the PET day. We were quiet while driving to Madison. Of course what was on our minds?
What would the scan show? Was the cancer gone really? Rich felt he should have tons of energy by now. How come he didn't?
Both of us mentally asked ourselves questions as we drove to the Carbone Cancer Center.
What next?
Indeed.
The Scan went well and then we ate lunch at the UW Hospital cafeteria. Rich was engaging and we nervously made little jokes about this and that.
We finally headed to the cancer treatment center and the waiting room.
Fairly quickly a Dr. Morris and a Medical Assistant, both assigned to Dr. Witek came and got us. They did the normal things blood pressure, questions, complaints and so forth.
Rich's biggest complaint was that he was still not energetic. Yet he told Dr. Morris how he used to be able to do certain things like push a wheel barrow with a heavy hay bale in it, up a hill. But now he had to stop and rest half way up.
Dr. Morris blinked and then said, "Man, you are doing far more than so many people that go through this, I would consider that you are out doing the chores as a huge positive."
Of course that fell on deaf ears. I sometimes wonder if Rich doesn't think that the medical field will magically make him 19 again. The period of time in which he could work tirelessly. I don't think he understands that he is a 66 year old man that has health issues on top of cancer treatment recovery.
I agree with Dr. Morris, Rich's recovery compared to many other patients 'in his shoes' was indeed very good. He was doing things, he was eating foods that many patients never eat again.
Dr. Witek came in with the good news. The PET Scan showed no cancer at all in the throat area, the scan was clean.
I can't tell you how much relief I felt at that moment. Clean? That nearly felt impossible.
Rich? He seemed non-pulsed by it in a way.
He complained again about his lack of energy and how things were never going to be normal or better than normal again. He was upset that he would have somewhat of a 'turkey neck' for the rest of his life and that perhaps his salvary glands may never come back to what they once where.
Even Dr. Witek at one point said to Rich, "Dude, you have to understand that you may have to live with these things the rest of your life, isn't that better than the alternative?"
Somehow that did not placate Rich.
But the evil little cells had been killed.
Of course there is always a chance of the cancer returning in the next two years, and for the next two years we will be subjected to follow ups and more scans.
We went home. I felt like an elephant had been lifted from my shoulders.
And I found myself going to bed wondering 'what is normal?'
Why complain about being alive?
But then, I am not the patient am I?
Dr. Witek was pretty confident that he and his team plus the team at the VA had 'nailed' the throat cancer.
We all left the office that day with a good attitude.
Then came the PET day. We were quiet while driving to Madison. Of course what was on our minds?
What would the scan show? Was the cancer gone really? Rich felt he should have tons of energy by now. How come he didn't?
Both of us mentally asked ourselves questions as we drove to the Carbone Cancer Center.
What next?
Indeed.
The Scan went well and then we ate lunch at the UW Hospital cafeteria. Rich was engaging and we nervously made little jokes about this and that.
We finally headed to the cancer treatment center and the waiting room.
Fairly quickly a Dr. Morris and a Medical Assistant, both assigned to Dr. Witek came and got us. They did the normal things blood pressure, questions, complaints and so forth.
Rich's biggest complaint was that he was still not energetic. Yet he told Dr. Morris how he used to be able to do certain things like push a wheel barrow with a heavy hay bale in it, up a hill. But now he had to stop and rest half way up.
Dr. Morris blinked and then said, "Man, you are doing far more than so many people that go through this, I would consider that you are out doing the chores as a huge positive."
Of course that fell on deaf ears. I sometimes wonder if Rich doesn't think that the medical field will magically make him 19 again. The period of time in which he could work tirelessly. I don't think he understands that he is a 66 year old man that has health issues on top of cancer treatment recovery.
I agree with Dr. Morris, Rich's recovery compared to many other patients 'in his shoes' was indeed very good. He was doing things, he was eating foods that many patients never eat again.
Dr. Witek came in with the good news. The PET Scan showed no cancer at all in the throat area, the scan was clean.
I can't tell you how much relief I felt at that moment. Clean? That nearly felt impossible.
Rich? He seemed non-pulsed by it in a way.
He complained again about his lack of energy and how things were never going to be normal or better than normal again. He was upset that he would have somewhat of a 'turkey neck' for the rest of his life and that perhaps his salvary glands may never come back to what they once where.
Even Dr. Witek at one point said to Rich, "Dude, you have to understand that you may have to live with these things the rest of your life, isn't that better than the alternative?"
Somehow that did not placate Rich.
But the evil little cells had been killed.
Of course there is always a chance of the cancer returning in the next two years, and for the next two years we will be subjected to follow ups and more scans.
We went home. I felt like an elephant had been lifted from my shoulders.
And I found myself going to bed wondering 'what is normal?'
Why complain about being alive?
But then, I am not the patient am I?
Tuesday, September 15, 2015
3 Months Out/PET Scan today
Shall I say that I am up early and worrying and have been worrying for about a week now?
The dreaded and much looked forward to PET scan is today at noon.
Results will be at 3:30 PM with Dr. Witek delivering the good news.
I'm sure they knocked out the throat cancer. We are trying to only think positive but are prepared for the other diagnoses.
Rich has said if IT isn't gone,[cancer has become an IT now in the house], he would consider a simple option but could never subject himself to the hell that he/we went through again. We'd seek palliative care.
Radiation in high exposures do cause some radiation sickness like symptoms. The radiation can attack your red blood cells, affect your intestinal system, and the blood cells that produce bone marrow.
Rich is still recovering from his treatments. The Carbone Cancer center used Tomotherapy which:
"An important distinction between tomotherapy and other radiation treatments is that past methods exposed much larger areas of the body to higher levels of radiation distributed from fewer angles. Tomotherapy, with its ability to deliver lower doses from many different angles, affects very limited areas of healthy tissue and results in fewer side effects."
From the Tomotherapy Radiation Univ of WI Madison
So the next few hours and days will be interesting and hopefully very joyful ones.
The dreaded and much looked forward to PET scan is today at noon.
Results will be at 3:30 PM with Dr. Witek delivering the good news.
I'm sure they knocked out the throat cancer. We are trying to only think positive but are prepared for the other diagnoses.
Rich has said if IT isn't gone,[cancer has become an IT now in the house], he would consider a simple option but could never subject himself to the hell that he/we went through again. We'd seek palliative care.
Radiation in high exposures do cause some radiation sickness like symptoms. The radiation can attack your red blood cells, affect your intestinal system, and the blood cells that produce bone marrow.
Rich is still recovering from his treatments. The Carbone Cancer center used Tomotherapy which:
"An important distinction between tomotherapy and other radiation treatments is that past methods exposed much larger areas of the body to higher levels of radiation distributed from fewer angles. Tomotherapy, with its ability to deliver lower doses from many different angles, affects very limited areas of healthy tissue and results in fewer side effects."
From the Tomotherapy Radiation Univ of WI Madison
So the next few hours and days will be interesting and hopefully very joyful ones.
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 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."
Friday, August 14, 2015
Low Blood Pressure, Lymphedema of the neck
Some of the issues that are still creeping around with Rich are the Lymphedema of the neck, which he was told was 'normal'.
However it is bothering him and I have done some research on this condition. I find it surprising that the cancer care providers haven't addressed this issue.
Of course dealing with the VA and looking for some Physical Therapy for this condition could be interesting to say the least.
I've been researching nih.gov and pubmed for information on what is called Head and Neck Lymphedema which is shortened to: HNL.
Less than 50% of HNC [Head Neck Cancer] patients get HNL and sometimes it can be pretty serious. So I am adding this to the list of things we must see the doctors about.
From The Role of Lyphedema in Head and Neck Cancer
Yesterday Rich's blood pressure dropped from 133/68 to 119/67 within two minutes. So obviously last week's visit to the clinic eliminated his BP meds but it hasn't resolved that particular issue.
Yesterday I did find a site that showed how to do home physical therapy to drain the damaged lymph nodes.
The hardest part is to actually insist that Rich sit and do the 5 minutes of massage. I even bookmarked it on his chromebook so that he can watch and follow along when I am not home.
He did it when I insisted on it yesterday morning, but then brushed it off last night.
Of course he is feeling some extreme fatigue right now and that could have a lot to do with both the low blood pressure and the lymph nodes not properly draining.
I think the biggest problem he is having is that he thought when he was done with chemo and radiation...and things would go back to normal.
Recovery from HNC can take a long time. With some of his other health issues, it may be a bit of a struggle and I don't think he is mentally handling it very well at this point.
Tuesday we see Dr. Rahim, his oncologist and perhaps we can address these issues.
So we wait until then.
However it is bothering him and I have done some research on this condition. I find it surprising that the cancer care providers haven't addressed this issue.
Of course dealing with the VA and looking for some Physical Therapy for this condition could be interesting to say the least.
I've been researching nih.gov and pubmed for information on what is called Head and Neck Lymphedema which is shortened to: HNL.
Less than 50% of HNC [Head Neck Cancer] patients get HNL and sometimes it can be pretty serious. So I am adding this to the list of things we must see the doctors about.
From The Role of Lyphedema in Head and Neck Cancer
Clinically, the presentation of lymphedema parallels its level of severity. In the earliest stage, HNL may present as “heaviness” or “tightness” without visible edema. As HNL progresses, it is apparent as a barely noticeable fullness without functional detriment, and can progress to pitting edema that may or may not affect function. Although rare in HNC patients, lymphedema can present as grossly disfiguring elephantiasis with severe disability in its final stage.
Similar to other side effects that are associated with the treatment for head and neck tumors, quality of life is often significantly impacted by HNL. The effects of HNL are not simply cosmetic. Significant lymphedema of the face, mouth, and neck can result in substantial functional consequences to communication (speaking, reading, writing, and hearing), alimentation, and respiration
Yesterday Rich's blood pressure dropped from 133/68 to 119/67 within two minutes. So obviously last week's visit to the clinic eliminated his BP meds but it hasn't resolved that particular issue.
Yesterday I did find a site that showed how to do home physical therapy to drain the damaged lymph nodes.
The hardest part is to actually insist that Rich sit and do the 5 minutes of massage. I even bookmarked it on his chromebook so that he can watch and follow along when I am not home.
He did it when I insisted on it yesterday morning, but then brushed it off last night.
Of course he is feeling some extreme fatigue right now and that could have a lot to do with both the low blood pressure and the lymph nodes not properly draining.
I think the biggest problem he is having is that he thought when he was done with chemo and radiation...and things would go back to normal.
Recovery from HNC can take a long time. With some of his other health issues, it may be a bit of a struggle and I don't think he is mentally handling it very well at this point.
Tuesday we see Dr. Rahim, his oncologist and perhaps we can address these issues.
So we wait until then.
Saturday, August 1, 2015
7 Weeks Out and Lymphedma of the throat
Things were really cruising along and Rich was feeling much better day by day. He did things like mowing pastures, mowing the yard, working on the Jeep, doing chores ... his energy nearly seemed boundless.
7 weeks out we hit a sudden snag. Miss Peggy came out, but the doctors had given him a bit of grief for losing weight. He told them that it had been so hot and humid that he didn't feel much like eating.
Then yesterday, after I got home from a 'graveyard' shift, he told me he was not just feeling quite up to par. I helped with chores and then fell to sleep.
He has lymphedma~~
"Head and neck lymphedema occurs when the body is unable to transport fluid due to damage to the lymphatic system. It happens when scarring from a surgery blocks lymphatic vessels in the neck or the lymphatic system is damaged by radiation therapy."
It started creeping in slowly and has come to what I'd consider full force right now. So far it hasn't impeded his speech or swallowing, but I do notice that he is trying to clear his throat more often.
I'm sure that his lymph nodes around his neck were damaged with radiation, another little thing that we didn't know might happen.
I'm going to look into the massage technique of moving the fluid out of below his chin.
On a second note, work has tossed me into the fray of things. Since my first day back after 3 weeks off, I have worked 40 hrs a week and the shifts are all over the place. I took the time happily because Rich was doing so well.
Now that I believe that Rich is feeling crappy and not eating well, it is time to put my foot down at work and tell them that I need to be taking more time to take care of my husband.
Cancer taught me that being with my husband and having quality time together is more important than most anything else.
Of course Rich is looking forward to having our 10 year old Grand daughter come for a week's visit from Wausau. He bought a fishing license, so he can take her fishing. He is going to teach her how to ride Fred our fantastic old mule.
He plans on taking her for rides on the 4 wheeler. And just spending some one on one time with her.
Lily was very distraught over Rich's cancer diagnosis and this should help both her and Rich feel better.
7 weeks out we hit a sudden snag. Miss Peggy came out, but the doctors had given him a bit of grief for losing weight. He told them that it had been so hot and humid that he didn't feel much like eating.
Then yesterday, after I got home from a 'graveyard' shift, he told me he was not just feeling quite up to par. I helped with chores and then fell to sleep.
He has lymphedma~~
"Head and neck lymphedema occurs when the body is unable to transport fluid due to damage to the lymphatic system. It happens when scarring from a surgery blocks lymphatic vessels in the neck or the lymphatic system is damaged by radiation therapy."
It started creeping in slowly and has come to what I'd consider full force right now. So far it hasn't impeded his speech or swallowing, but I do notice that he is trying to clear his throat more often.
I'm sure that his lymph nodes around his neck were damaged with radiation, another little thing that we didn't know might happen.
I'm going to look into the massage technique of moving the fluid out of below his chin.
On a second note, work has tossed me into the fray of things. Since my first day back after 3 weeks off, I have worked 40 hrs a week and the shifts are all over the place. I took the time happily because Rich was doing so well.
Now that I believe that Rich is feeling crappy and not eating well, it is time to put my foot down at work and tell them that I need to be taking more time to take care of my husband.
Cancer taught me that being with my husband and having quality time together is more important than most anything else.
Of course Rich is looking forward to having our 10 year old Grand daughter come for a week's visit from Wausau. He bought a fishing license, so he can take her fishing. He is going to teach her how to ride Fred our fantastic old mule.
He plans on taking her for rides on the 4 wheeler. And just spending some one on one time with her.
Lily was very distraught over Rich's cancer diagnosis and this should help both her and Rich feel better.
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.
Thursday, June 18, 2015
Last Day of Radiation
I can't believe I let June 15th come and go without mentioning it here.
Monday the 15th, was the last day for radiation or TomoTherapy as it is properly called.
Rich's daughter Stephanie came with Dennis and Ariel so we could all be together for the 'event'.
We kept things pretty low key while in the waiting room. I've watched and waited for nearly seven weeks for this day to come and I notice that other patients were very quiet about their last radiation treatments and we followed suit.
We ran into the 'woman' we met last week as Rich came out of the treatment room. We hugged and I heard her first name called by the nurse. She was in day 14, she had just finished her 3rd chemo.
She told me that she still had my email address and 'almost' wrote to me. I shrugged and said, "It is there if you need it."
Nurse Jackie took our entourage down the hall to Dr. Witek's exam room. Dr. Witek came in and looked around. Oncologists often see the family with the patient and they say the better support a patient had, the better the outcome.
Rich introduced everyone and then Dr. Witek examined Rich telling him congratulations on filling up the paper...meaning, making all of the radiation treatments.
He then turned to the kids and said "This is going to be fun, watch me try and look into your Grandpa's mouth! He can't stick out his tongue and say AHHH at the same time! It is pretty funny!"
Rich wrapped a piece of gauze around his tongue and pulled it out. Dr. Witek looked surprised and took a look into his mouth at the tonsil that had the tumor.
He stood back and laughed. "Rich, you are a man of your word! It looks good! Nothing there I can see. The lymph node has shrunk. If I had to flip a coin I'd say we did it."
He paused.
"Of course cancer is an interesting thing. There is always the chance that we didn't get one or two stray cells okay? But I'm thinking we got it. We'll do a PET scan in 3 months because otherwise your radiation will 'heat' up the PET scan and give false readings. Questions?"
"Should you take my tonsil out doc?" Rich asked.
"Good question and no we won't unless that happens to be a last resort if the cancer came back. Too much possibility of bleeding and risk. Oh and I think your PEG tube can go in a few weeks too."
"Yes!" Rich exclaimed, "I can get rid of Miss Peggy!"
We finally left, our whole group was feeling elated. Rich could still eat almost normally but the pain was there. He still aspirated often while drinking water and the coughing fit he had afterwards was quite awful.
If someone had told me a few weeks ago that I'd be walking out of the UW Carbone Cancer center with Rich feeling pretty good and able to walk, talk, eat, and drink...I'd have told them they were absolutely nuts.
We went out to celebrate with the kids at Perkins and on the way home I took a detour and went to Old Hyde Mill to take some photos.
We got home after 5pm and took naps. I was emotionally exhausted yet happy. No more daily radiation appointments.
Let the follow up appointments begin.
Monday the 15th, was the last day for radiation or TomoTherapy as it is properly called.
Rich's daughter Stephanie came with Dennis and Ariel so we could all be together for the 'event'.
We kept things pretty low key while in the waiting room. I've watched and waited for nearly seven weeks for this day to come and I notice that other patients were very quiet about their last radiation treatments and we followed suit.
We ran into the 'woman' we met last week as Rich came out of the treatment room. We hugged and I heard her first name called by the nurse. She was in day 14, she had just finished her 3rd chemo.
She told me that she still had my email address and 'almost' wrote to me. I shrugged and said, "It is there if you need it."
Nurse Jackie took our entourage down the hall to Dr. Witek's exam room. Dr. Witek came in and looked around. Oncologists often see the family with the patient and they say the better support a patient had, the better the outcome.
Rich introduced everyone and then Dr. Witek examined Rich telling him congratulations on filling up the paper...meaning, making all of the radiation treatments.
He then turned to the kids and said "This is going to be fun, watch me try and look into your Grandpa's mouth! He can't stick out his tongue and say AHHH at the same time! It is pretty funny!"
Rich wrapped a piece of gauze around his tongue and pulled it out. Dr. Witek looked surprised and took a look into his mouth at the tonsil that had the tumor.
He stood back and laughed. "Rich, you are a man of your word! It looks good! Nothing there I can see. The lymph node has shrunk. If I had to flip a coin I'd say we did it."
He paused.
"Of course cancer is an interesting thing. There is always the chance that we didn't get one or two stray cells okay? But I'm thinking we got it. We'll do a PET scan in 3 months because otherwise your radiation will 'heat' up the PET scan and give false readings. Questions?"
"Should you take my tonsil out doc?" Rich asked.
"Good question and no we won't unless that happens to be a last resort if the cancer came back. Too much possibility of bleeding and risk. Oh and I think your PEG tube can go in a few weeks too."
"Yes!" Rich exclaimed, "I can get rid of Miss Peggy!"
We finally left, our whole group was feeling elated. Rich could still eat almost normally but the pain was there. He still aspirated often while drinking water and the coughing fit he had afterwards was quite awful.
If someone had told me a few weeks ago that I'd be walking out of the UW Carbone Cancer center with Rich feeling pretty good and able to walk, talk, eat, and drink...I'd have told them they were absolutely nuts.
We went out to celebrate with the kids at Perkins and on the way home I took a detour and went to Old Hyde Mill to take some photos.
We got home after 5pm and took naps. I was emotionally exhausted yet happy. No more daily radiation appointments.
Let the follow up appointments begin.
Friday, June 12, 2015
Throat Cancer a bit of a review
Today Rich sort of had a pre-celebration regarding his radiation treatments.
Only one more to go.
This is a photo from his treatment room ... he is in his mask and the tech put his sunglasses and hat on him.
On Wednesday, April 29th 2015, Rich had his first radiation and chemo treatment.
That was 32 treatments ago.
It was inconceivable that we'd ever see the end of radiation or chemo. But now that last day is looming on Monday June 15th, 2015.
Even last week we felt like the 'end' was still so far off.
Some things to remember about radiation therapy. The side effects don't quit on the day the therapy quits.
The side effects can show up later in life in many various ways as explained in detail by Itzhak Brook MD in his book My Voice: A Physician's Personal Experience with Throat Cancer.
If you read the book or review it at this link you might wonder why on earth would anyone want to go through cancer treatment at all.
It is pretty simple.
The patient wants to live longer.
It is simple. Without the treatment the options are only one.
A slow and painful death.
We go for the treatment to up our odds, to gain some years with loved ones. Or because we feel deeply that we can be cured and look back on the treatment as a huge hurdle in life.
How do we feel today? Optimistic. We may or may not have 'beaten' the odds. We don't know what the eventual outcome is, but we are looking for it to be positive.
This journey is not over. We can't just wave goodbye to a several weeks of treatment and pretend it never happened. The whole process from the diagnosis through all the ups and downs of chemo and radiation has changed us.
It isn't HIM who has cancer. We know it is him, but it is we that went through it together.
The word we includes his doctors, the nurses, myself, his daughter, his son in law, the grand kids, and yes, even the dog.
Neighbors who have helped with meals, mowing yard, coming over to move round bales, my eldest son who came out and worked to help make fencing and clearing the area under the electric fence with a weed eater.
My youngest son, who sent photos and videos of his children to make us laugh.
Our dear friends who came to visit from Missouri and brought their newborn to cheer up Rich...
the list is endless and keeps expanding.
Gary, the broken down old soul who washes car windows at the gas station we stop at day after day. A nameless person until Rich and he shared cancer stories. Gary ~ the guy who gave me a hug when he thought I needed it. And yes I did need it.
Our journey is far from over. We have cleared the first hurdle and feel a bit more stronger to try and get over the next one that is tossed at us.
Today we fight the radiation burns on his neck. I gently rinse water to slough off the dead skin. I reapply Silver Sulfadizine carefully. This process can take up to an hour each time.
We get tired and short with each other. We laugh and hug. I tuck him in at night.
Sometimes we walk around each other like two cats preparing for a fight.
Other times we walk together holding hands.
So we have hope and we have love. We have changed in some ways.
And we remain the same people in many other ways.
It is hard to explain.
But we look forward to each new day.
Because we can.
Only one more to go.
This is a photo from his treatment room ... he is in his mask and the tech put his sunglasses and hat on him.
On Wednesday, April 29th 2015, Rich had his first radiation and chemo treatment.
That was 32 treatments ago.
It was inconceivable that we'd ever see the end of radiation or chemo. But now that last day is looming on Monday June 15th, 2015.
Even last week we felt like the 'end' was still so far off.
Some things to remember about radiation therapy. The side effects don't quit on the day the therapy quits.
The side effects can show up later in life in many various ways as explained in detail by Itzhak Brook MD in his book My Voice: A Physician's Personal Experience with Throat Cancer.
If you read the book or review it at this link you might wonder why on earth would anyone want to go through cancer treatment at all.
It is pretty simple.
The patient wants to live longer.
It is simple. Without the treatment the options are only one.
A slow and painful death.
We go for the treatment to up our odds, to gain some years with loved ones. Or because we feel deeply that we can be cured and look back on the treatment as a huge hurdle in life.
How do we feel today? Optimistic. We may or may not have 'beaten' the odds. We don't know what the eventual outcome is, but we are looking for it to be positive.
This journey is not over. We can't just wave goodbye to a several weeks of treatment and pretend it never happened. The whole process from the diagnosis through all the ups and downs of chemo and radiation has changed us.
It isn't HIM who has cancer. We know it is him, but it is we that went through it together.
The word we includes his doctors, the nurses, myself, his daughter, his son in law, the grand kids, and yes, even the dog.
Neighbors who have helped with meals, mowing yard, coming over to move round bales, my eldest son who came out and worked to help make fencing and clearing the area under the electric fence with a weed eater.
My youngest son, who sent photos and videos of his children to make us laugh.
Our dear friends who came to visit from Missouri and brought their newborn to cheer up Rich...
the list is endless and keeps expanding.
Gary, the broken down old soul who washes car windows at the gas station we stop at day after day. A nameless person until Rich and he shared cancer stories. Gary ~ the guy who gave me a hug when he thought I needed it. And yes I did need it.
Our journey is far from over. We have cleared the first hurdle and feel a bit more stronger to try and get over the next one that is tossed at us.
Today we fight the radiation burns on his neck. I gently rinse water to slough off the dead skin. I reapply Silver Sulfadizine carefully. This process can take up to an hour each time.
We get tired and short with each other. We laugh and hug. I tuck him in at night.
Sometimes we walk around each other like two cats preparing for a fight.
Other times we walk together holding hands.
So we have hope and we have love. We have changed in some ways.
And we remain the same people in many other ways.
It is hard to explain.
But we look forward to each new day.
Because we can.
Swallow Testing, Throat Burns
From June 11th
I took Rich's temperature, it was still low grade and his neck looked pretty nasty.
He didn't want his meds yet again.
I sighed and dropped the phone next to him and told him he could call 911, or the Triage Nurse at the VA. I rattled his truck keys and set them down within his reach.
I informed him that I was doing chores and would be back in a bit.
I returned to the house to find that he was going to co-operate. He took his pain medicine and started to feel better right away.
I washed his hair and cleaned up his neck wearing surgical gloves. I would ask to see the nurse today when we got to the UW.
The drive for the appointment was fairly uneventful except for the heavy downpours of rain that we encountered.
When we arrived at Radiation, Rich asked to see a nurse. Nurse Jackie of UW wasn't available so the other nurse came by. She looked at Rich's neck and said something needed to be done...but she was pretty sure that she couldn't get Silver Sulfadiazine approved unless Dr. Witek saw him and that would not be until Friday.
I asked her about his low grade fever and insisted that she get some answers regarding his neck burns.
Around the corner came Nurse Jackie.
She took one look at Rich's neck and grimaced. She said she'd call the VA Infusion Clinic and have the Silver Sulfadizine ready for us in about a half an hour.
She also explained that a low grade fever was common during the last few treatments, but we had to really keep an eye on it.
Boom. Now I know why Nurse Jackie is in the position she is in. She is quick, to the point and can get things done not only at the UW, but the VA as well.
To anyone going through any sort of treatment. Use your resources, advocate, advocate, and advocate. If something doesn't feel quite right, ask.
We then went to the VA and saw Dr. Faris, then we went on to see the SOP, Swallow, Oral, Pathologist. She took a long time to discuss swallowing issues with us and went as far as drawing a picture of the throat and epiglottis for us. She explained that with radiation the epiglottis can get swollen and deformed causing issues with certain kinds of swallowing.
When we got home I was able to apply the cream and Rich said it was soothing to his skin and the burns.
It was a good day and we sat down and ate a nice supper that one of the neighbors had prepared for us.
This morning, the 12th, he is feeling much better. His temp is nearly normal, and we are getting ready to clean off the neck. We cannot have any of the cream on his neck during radiation.
It looks rather ugly right now but he says it feels much better.
From what I understand the last few days of radiation and beyond can be the worst.
A quote from another patient:
"Radiation, the gift that keeps on Giving."
I took Rich's temperature, it was still low grade and his neck looked pretty nasty.
He didn't want his meds yet again.
I sighed and dropped the phone next to him and told him he could call 911, or the Triage Nurse at the VA. I rattled his truck keys and set them down within his reach.
I informed him that I was doing chores and would be back in a bit.
I returned to the house to find that he was going to co-operate. He took his pain medicine and started to feel better right away.
I washed his hair and cleaned up his neck wearing surgical gloves. I would ask to see the nurse today when we got to the UW.
The drive for the appointment was fairly uneventful except for the heavy downpours of rain that we encountered.
When we arrived at Radiation, Rich asked to see a nurse. Nurse Jackie of UW wasn't available so the other nurse came by. She looked at Rich's neck and said something needed to be done...but she was pretty sure that she couldn't get Silver Sulfadiazine approved unless Dr. Witek saw him and that would not be until Friday.
I asked her about his low grade fever and insisted that she get some answers regarding his neck burns.
Around the corner came Nurse Jackie.
She took one look at Rich's neck and grimaced. She said she'd call the VA Infusion Clinic and have the Silver Sulfadizine ready for us in about a half an hour.
She also explained that a low grade fever was common during the last few treatments, but we had to really keep an eye on it.
Boom. Now I know why Nurse Jackie is in the position she is in. She is quick, to the point and can get things done not only at the UW, but the VA as well.
To anyone going through any sort of treatment. Use your resources, advocate, advocate, and advocate. If something doesn't feel quite right, ask.
We then went to the VA and saw Dr. Faris, then we went on to see the SOP, Swallow, Oral, Pathologist. She took a long time to discuss swallowing issues with us and went as far as drawing a picture of the throat and epiglottis for us. She explained that with radiation the epiglottis can get swollen and deformed causing issues with certain kinds of swallowing.
When we got home I was able to apply the cream and Rich said it was soothing to his skin and the burns.
It was a good day and we sat down and ate a nice supper that one of the neighbors had prepared for us.
This morning, the 12th, he is feeling much better. His temp is nearly normal, and we are getting ready to clean off the neck. We cannot have any of the cream on his neck during radiation.
It looks rather ugly right now but he says it feels much better.
From what I understand the last few days of radiation and beyond can be the worst.
A quote from another patient:
"Radiation, the gift that keeps on Giving."
Thursday, June 11, 2015
Adventures with Cancer...
It seems each day in the treatment of Throat Cancer is a day of some kind adventure.
On our way home yesterday we took a few side trips to look at Rich's old 'fishing' haunts. I played chauffeur and he gave me directions.
We stopped in about 4 places and I think he enjoyed it. We talked about maybe coming back soon with fishing poles and taking a turn at tossing worms into the Wisconsin River.
We discussed driving over on County H just outside of Lone Rock to see the old Mill too.
The day was incredibly hot though and of course I played mother hen and cautioned him about the heat and the sun.
His neck has been burning up from these last radiation treatments. Two days ago I asked if this was normal and the techs replied it was.
Last night I looked at his neck as I gently cleaned it.
No, this was something that concerned me.
Then Mr. Stubborn decided not to take his pain medicine even though it hurt like heck...no it hurt worse than that. I could see his arms shaking. He turned white as a ghost but told me to continue.
I asked him to take his Oxycodone. He refused saying he didn't wasn't to 'get hooked' on it.
I explained that the pain would make him feel more ill.
Nope.
I used Aloe gel on the burns and decided on Thursday that I'd stand in the waiting room until I saw THE nurse.
In the beginning I was told we'd have nurse co-ordinators to see us whenever we had a question or concern.
Rich went to sleep and assured me he'd be fine while I got Morris.
When I got home, Rich said he hurt worse than ever. I asked where.
"All over."
I tried to get him to tell me, was it his throat, the radiated skin, or something else.
When he gets like that he remains staunch and won't tell you a thing.
"I just hurt."
He then told me he was cold. I took his temperature and it was 99. Low grade.
I tried to get him to eat or drink.
"NO."
I tried him to take some Oxy.
"NO."
I tried to get him to take his proper medications.
You guessed it.
Nope.
At 10pm I checked his temperature. 100.1, at 2am I checked his temperature 100.3.
My list from both the Infusion clinic and Radiation clinic specifically tell the patient they must be seen by a doctor with any temperature of 100.5 or more.
Morris laid down next to Rich on the floor and put his head in his paws. He was worried and watched also.
After trying to get some sleep on the couch or the recliner, I finally gave up and went to the upstairs bedroom.
I normally get up at 6am. I'd check his temp then.
~~~ Follow up in the next blog.
On our way home yesterday we took a few side trips to look at Rich's old 'fishing' haunts. I played chauffeur and he gave me directions.
We stopped in about 4 places and I think he enjoyed it. We talked about maybe coming back soon with fishing poles and taking a turn at tossing worms into the Wisconsin River.
We discussed driving over on County H just outside of Lone Rock to see the old Mill too.
The day was incredibly hot though and of course I played mother hen and cautioned him about the heat and the sun.
His neck has been burning up from these last radiation treatments. Two days ago I asked if this was normal and the techs replied it was.
Last night I looked at his neck as I gently cleaned it.
No, this was something that concerned me.
Then Mr. Stubborn decided not to take his pain medicine even though it hurt like heck...no it hurt worse than that. I could see his arms shaking. He turned white as a ghost but told me to continue.
I asked him to take his Oxycodone. He refused saying he didn't wasn't to 'get hooked' on it.
I explained that the pain would make him feel more ill.
Nope.
I used Aloe gel on the burns and decided on Thursday that I'd stand in the waiting room until I saw THE nurse.
In the beginning I was told we'd have nurse co-ordinators to see us whenever we had a question or concern.
Rich went to sleep and assured me he'd be fine while I got Morris.
When I got home, Rich said he hurt worse than ever. I asked where.
"All over."
I tried to get him to tell me, was it his throat, the radiated skin, or something else.
When he gets like that he remains staunch and won't tell you a thing.
"I just hurt."
He then told me he was cold. I took his temperature and it was 99. Low grade.
I tried to get him to eat or drink.
"NO."
I tried him to take some Oxy.
"NO."
I tried to get him to take his proper medications.
You guessed it.
Nope.
At 10pm I checked his temperature. 100.1, at 2am I checked his temperature 100.3.
My list from both the Infusion clinic and Radiation clinic specifically tell the patient they must be seen by a doctor with any temperature of 100.5 or more.
Morris laid down next to Rich on the floor and put his head in his paws. He was worried and watched also.
After trying to get some sleep on the couch or the recliner, I finally gave up and went to the upstairs bedroom.
I normally get up at 6am. I'd check his temp then.
~~~ Follow up in the next blog.
Wednesday, June 10, 2015
Dragging our Feet
The last day of radiation is supposed to be Monday, June 15th. The first day of radiation and chemo was on April 28th.
What a long long time.
I'm sure it is not as long as some folks have treatments for other cancers.
For me? I am getting close to never caring if I drive again to Madison, or park in the UW's parking garage or even see the doors to the VA Hospital.
I am weary of the drive. Even with the short breaks while Rich was in the hospital or those times when his daughter had him, it feels like it has been forever.
Which, of course is not true at all.
Rich's neck looks nasty and it is hot as mentioned in the previous post. We've been applying lotion and cool compresses to try and ease the burning sensation.
Eating by mouth is a bit of a challenge, but he is still doing it. Yesterday we had a great lunch at Grandma Mary's in Arena, WI.
We often stop there on our way back from Madison as it gives us a break.
This morning was a tough one so far. Neither one of us wanted to get up and get going. I'm still delaying going out to do the chores. I'm bone tired in some ways I feel beyond tired.
Rich feels the same way and his neck just burns. I put lotion on it and he sat still. I'm using gloves now even though I've washed my hands well. I don't want to cause an infection anywhere on his neck by accident.
Dr. Witek says his neck will keep cooking for a while after radiation is done.
I've read on message boards that this time [depending on the person] can be up to 6 weeks.
They say: 'Radiation, the gift that keeps on giving [or burning]'.
I guess the positive things to look at are ... the daily trips are nearly over.
Radiation is nearly over.
And then what?
Life after treatment?
Will our lives ever become normal again?
Oh I hope so.
Chores are waiting. And we leave for another day of 'fun and adventure' in an hour.
Tonight though, I'm going to go pick up Morris and bring him back home.
We need his silly face.
What a long long time.
I'm sure it is not as long as some folks have treatments for other cancers.
For me? I am getting close to never caring if I drive again to Madison, or park in the UW's parking garage or even see the doors to the VA Hospital.
I am weary of the drive. Even with the short breaks while Rich was in the hospital or those times when his daughter had him, it feels like it has been forever.
Which, of course is not true at all.
Rich's neck looks nasty and it is hot as mentioned in the previous post. We've been applying lotion and cool compresses to try and ease the burning sensation.
Eating by mouth is a bit of a challenge, but he is still doing it. Yesterday we had a great lunch at Grandma Mary's in Arena, WI.
We often stop there on our way back from Madison as it gives us a break.
This morning was a tough one so far. Neither one of us wanted to get up and get going. I'm still delaying going out to do the chores. I'm bone tired in some ways I feel beyond tired.
Rich feels the same way and his neck just burns. I put lotion on it and he sat still. I'm using gloves now even though I've washed my hands well. I don't want to cause an infection anywhere on his neck by accident.
Dr. Witek says his neck will keep cooking for a while after radiation is done.
I've read on message boards that this time [depending on the person] can be up to 6 weeks.
They say: 'Radiation, the gift that keeps on giving [or burning]'.
I guess the positive things to look at are ... the daily trips are nearly over.
Radiation is nearly over.
And then what?
Life after treatment?
Will our lives ever become normal again?
Oh I hope so.
Chores are waiting. And we leave for another day of 'fun and adventure' in an hour.
Tonight though, I'm going to go pick up Morris and bring him back home.
We need his silly face.
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