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.
Showing posts with label Radiation. Show all posts
Showing posts with label Radiation. Show all posts
Tuesday, September 15, 2015
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."
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.
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."
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.
Monday, June 8, 2015
Hot neck
The radiation sure is causing Rich's neck to be sore not only on the inside, but also on the outside.
I am amazed at how reddish dark the neck is where he is getting the RAD treatments.
We asked Dr. Witek on Friday if we could use cool compresses to ease some of the heat and pain on the outside of the neck.
He grinned and said I could stick Rich's head in the freezer...he paused and looked at Rich..."and shut the door!" We all laughed.
But the cool compress does work. We have to remember though to continuously keep the radiated skin moisturized. Rich likes Lubriderm the best.
At this point the skin is an angry purple - red color, the sort of color you would expect to see on a severe sun burn.
Outside Rich wears a wide brimmed hat and a cloth to shade the back of his neck. The skin is very sensitive to the sun and will be for quite a while.
Tonight I made an odd mix of foods for supper. I pan sauteed a sirloin tip steak and then cut it into extremely thin strips. I sauteed mushrooms and added that to the strips.
Rich wanted some beans, so I added them to the mix and let the ingredients just come to a light simmer.
The sirloin steak was so incredibly tender and tasty. The mushrooms mixed with the steak and beans actually tasted wonderful. Rich was able to take the thin strips and cut them smaller so it was easy to swallow.
Well, there you go. Dr. Witek told him weeks ago to forget steaks for a while.
I guess we showed him!
Tips:
Stay out of the sun with radiated skin...it will hurt.
Cool compresses help... A LOT
Peppermint tea and honey...cool it off and drink, helps with the sore throat
Lots of lotion...as often as you can do it.
Unscented very very mild soap...don NOT scrub it.
For guys: do not shave the area!
No ICE packs, cool to moderately cold compresses.
Hint: Take a cloth and rinse in cool water. After it is done, put the cloth in a zip lock baggy and stick it in the fridge to keep it cool.
While at home, take a t-shirt and cut around the neck so the material is not rubbing on the burned skin.
After we are done today... Next Monday is the last day of Radiation!
Who is counting?
We are!
I am amazed at how reddish dark the neck is where he is getting the RAD treatments.
We asked Dr. Witek on Friday if we could use cool compresses to ease some of the heat and pain on the outside of the neck.
He grinned and said I could stick Rich's head in the freezer...he paused and looked at Rich..."and shut the door!" We all laughed.
But the cool compress does work. We have to remember though to continuously keep the radiated skin moisturized. Rich likes Lubriderm the best.
At this point the skin is an angry purple - red color, the sort of color you would expect to see on a severe sun burn.
Outside Rich wears a wide brimmed hat and a cloth to shade the back of his neck. The skin is very sensitive to the sun and will be for quite a while.
Tonight I made an odd mix of foods for supper. I pan sauteed a sirloin tip steak and then cut it into extremely thin strips. I sauteed mushrooms and added that to the strips.
Rich wanted some beans, so I added them to the mix and let the ingredients just come to a light simmer.
The sirloin steak was so incredibly tender and tasty. The mushrooms mixed with the steak and beans actually tasted wonderful. Rich was able to take the thin strips and cut them smaller so it was easy to swallow.
Well, there you go. Dr. Witek told him weeks ago to forget steaks for a while.
I guess we showed him!
Tips:
Stay out of the sun with radiated skin...it will hurt.
Cool compresses help... A LOT
Peppermint tea and honey...cool it off and drink, helps with the sore throat
Lots of lotion...as often as you can do it.
Unscented very very mild soap...don NOT scrub it.
For guys: do not shave the area!
No ICE packs, cool to moderately cold compresses.
Hint: Take a cloth and rinse in cool water. After it is done, put the cloth in a zip lock baggy and stick it in the fridge to keep it cool.
While at home, take a t-shirt and cut around the neck so the material is not rubbing on the burned skin.
After we are done today... Next Monday is the last day of Radiation!
Who is counting?
We are!
Sunday, June 7, 2015
Stop being a mother hen
My oldest son Ed, came to help do 'stuff' around the farm on Saturday.
We finished the fencing and then Ed used his weed eater to clean around the fence line.
Rich had decided to get on his lawn mower and do some yard work. I worried and fussed over him until I got 'the look' and decided to let him do as he pleased.
No doubt he is feeling a bit better. The throat is sore and raw, but with careful meal planning he is still eating 'normal' food.
After last weekend's TIA, he is now wearing a 'Cardiac Event' monitor. It is made by LifeWatch and it records any events that may occur.
While Rich was cleaning the deck of the mower, his 'beeper' as we call it went off. We dutifully went inside and transmitted the 'event' by phone to the 800 number provided.
The technician asked Rich what he had been doing when the 'event' occurred and then will pass this information on to the doctor who is following him.
Later he had another 'event'.
We don't know what the 'events' are which sort of concerns me.
I assume the tech would tell us if we needed to go somewhere for help.
Rich had another 'event' while sleeping at 6am this morning. Stubborn ol' cuss. He said he was going to sleep and not get up to send out the event recording.
Well. On the flip side, he has been getting back to himself and aside from the difficulty in swallowing, and the very hot skin on his neck, he is doing better.
He is wearing a wide brim hat with a scarf over the back to keep the sun off his radiated neck.
It is good to see him taking an interest in things going on around the farm.
5 more days of radiation this coming week and then one day the week following.
He hopes that he will start to recover the swallowing process soon.
Although we've been told that a person's neck will still 'cook' for weeks after radiation treatment is done.
I kept after him all day to 'take it easy'. Then I realized that after what he had been through, I should stop being a Mother Hen and let him decide what his activities should be.
Friday, May 29, 2015
Chemo and Rad, counting the days
Well we were waiting for the lab department to take his blood for anylisis before chemo on Tuesday. I held the camera at waist level and snapped this, his number was 100.
Today was a good one. I met him at the infusion clinic with Nurse Jackie. The mental health 'team' had made sure to 'medicate' him properly so that he wouldn't have an anxiety attack.
This was a good plan.
Not only that, he was released into my care for the weekend with a heavy schedule for next week.
Thank goodness for electronic calendars, I can enter appointments in them and then can change them as they change for us. I can make it so his daughter can see the very same appointments.
As of today, Rich only has 10 Radiation treatments left!
Dustin, the RAD tech calls Rich ~ "Hollywood" ~ probably because of the bright colored western shirts he loves to wear and his very cool sunglasses that he even wears indoors.
As of today, I think he has only two chemo treatments left also.
I'm not saying we are out of the woods yet but I can say this, we ARE counting the days left, the treatments left, and looking forward to recovery.
Eating food is difficult for Rich, but he is persevering. We stopped on the way home from the VA and he ate a large Ham and Cheese omelette along with a large portion of hash browns. While he was a patient, the nurses kept him supplied with ice cream bars, snacks, puddings, and as many items they felt he could eat.
Throat Cancer Treatment, as told by Dr. R., is one of the most toughest regimes of cancer treatment to go through. The patient has to face a daunting regime of up to 33 radiation treatments to the throat, along with 6 to 7 chemotherapy treatments.
Nasty side effects are things like destruction of the saliva glands, which may or may not come back.
Foods may never taste the same.
Some people lose their ability to swallow food and have to be feed through a PEG tube while taking physical therapy to try and get back their swallowing muscles.
The skin on the neck becomes tender and hot. As I've heard folks describe it on Cancer discussion boards, your throat 'cooks' for weeks after radiation stops.
There is weakness and extreme fatigue. There is an emotional roller-coaster ride for both the patient and those around him.
But the results are often very encouraging.
We keep looking for the positive outcome.
So today we rejoice because Rich is home for the weekend and so far he has been sleeping comfortably on the futon his daughter and her husband brought today.
We re-arranged the tiny living room so he would not have to negotiate stairs at night to use the bathroom.
Tonight we end on a good note.
All is quiet.
One more day.
Thursday, May 21, 2015
Anaphylaxis Reaction to Chemo
From my journal May 20th.
Nurse Jackie recieved the new Chemo 'cocktail' to give to Rich and began to prepare to give it to him.
She explained that he would need to tell her right away if he felt funny in any way shape or form.
He agreed. Rich was in a great mood, he'd eaten a good breakfast and a good lunch.
In our meeting with Dr. R the day before the Oncologist Team had suggested a change in Chemo drugs because of the hearing loss experienced with Cisplatin.
The new 'cocktail' was called Erbitux. All chemo has side effects and we read about them and discussed them at length with Dr. R and signed the paperwork to go ahead with the treatment.
Jackie laughed and Rich made jokes about having to be stuck in the chair for hours on end.
I was busy creating a fractal called 'Cure Cancer' with my Mandelbulb 3D program on my laptop.
The Infusion clinic was busy with nurses attending other patients. I started working on the color scheme when Jackie asked Rich again if he felt funny.
I looked over. Rich nodded, his eyes had narrowed and looked far off. Jackie asked if he could hear her. He nodded.
Was he experiencing tunnel vision?
He nodded.
Could he answer her?
His head dropped to his chest.
Mr. Ewing, Richard, Richard! Jackie's voice became concerned.
Jackie must have sent out some sort of alert or maybe even shouted for help, because in the next instant he was surrounded by nurses. Blood pressure numbers were being read off, O2 levels.
I slammed my lid on the laptop and grabbed my stuff. I backed out of the way and into a corner.
Over the PA system came a call for the 'Crash Team' or whatever it was called. The announcement was for our little room.
I turned and watched as more people rushed in, a doctor ran in from a clinic across the hall.
Several people with giant orange bags entered and I shrunk back to stay out of the way.
I saw Rich's chest heaving, I could see he was grey and sweating. His legs began to jerk and twitch.
They were trying to get a response and none was coming.
I looked up. The VA police had arrived and I was curious at first, then saw that they were making sure that the doorways were open so that the medical teams could come and go without using them. And they were keeping anyone curious at bay.
Nurse Ronnie came up to me and asked me if I was okay. I simply replied, "Yes." She squeezed my arm.
She started to say something and I stared over at the mass of medical people and quietly said, "Anaphylactic shock?"
She hugged me, I hugged her back but watched.
On TV, everything happens so that you the viewer can understand what is going on. Conversations are clear and concise. Not so here. I caught parts of sentences being uttered and someone repeating them. Another voice. And another all jumbled together.
For a moment the staff backed off and I stepped forward to touch Rich.
I glanced down at his arm where the chemo concoction had gone in. It was bright red with huge welts on it.
Hives.
I'd never seen hives like that before.
I backed away.
The Team stabilized him and then we moved to the ED where they put him on a bed.
Dr. R appeared and I walked with him back to the Infusion clinic to pick up the rest of my things. Both he and Jackie looked a bit distraught. I touched Dr. R's arm and told him it would be okay.
According to the literature there is a less than .001% chance of a severe reaction like this to the drug.
He couldn't have known. Funny thought, me trying to comfort a doctor?
Ronnie and Jackie asked me again if I was okay.
Was I okay? I didn't know. I had gone into my mode of emotional distancing or was it withdrawal? I would have done no good by breaking down and causing a scene.
End result. Rich is home today [Thursday], he feels fine. He doesn't recall most of the incident and he did very well today. He even ate like a champ. We made our radiation appointment and headed home.
As soon as we dropped our stuff off in the house, we both headed upstairs to take nice long restful naps.
Nurse Jackie recieved the new Chemo 'cocktail' to give to Rich and began to prepare to give it to him.
She explained that he would need to tell her right away if he felt funny in any way shape or form.
He agreed. Rich was in a great mood, he'd eaten a good breakfast and a good lunch.
In our meeting with Dr. R the day before the Oncologist Team had suggested a change in Chemo drugs because of the hearing loss experienced with Cisplatin.
The new 'cocktail' was called Erbitux. All chemo has side effects and we read about them and discussed them at length with Dr. R and signed the paperwork to go ahead with the treatment.
Jackie laughed and Rich made jokes about having to be stuck in the chair for hours on end.
I was busy creating a fractal called 'Cure Cancer' with my Mandelbulb 3D program on my laptop.
The Infusion clinic was busy with nurses attending other patients. I started working on the color scheme when Jackie asked Rich again if he felt funny.
I looked over. Rich nodded, his eyes had narrowed and looked far off. Jackie asked if he could hear her. He nodded.
Was he experiencing tunnel vision?
He nodded.
Could he answer her?
His head dropped to his chest.
Mr. Ewing, Richard, Richard! Jackie's voice became concerned.
Jackie must have sent out some sort of alert or maybe even shouted for help, because in the next instant he was surrounded by nurses. Blood pressure numbers were being read off, O2 levels.
I slammed my lid on the laptop and grabbed my stuff. I backed out of the way and into a corner.
Over the PA system came a call for the 'Crash Team' or whatever it was called. The announcement was for our little room.
I turned and watched as more people rushed in, a doctor ran in from a clinic across the hall.
Several people with giant orange bags entered and I shrunk back to stay out of the way.
I saw Rich's chest heaving, I could see he was grey and sweating. His legs began to jerk and twitch.
They were trying to get a response and none was coming.
I looked up. The VA police had arrived and I was curious at first, then saw that they were making sure that the doorways were open so that the medical teams could come and go without using them. And they were keeping anyone curious at bay.
Nurse Ronnie came up to me and asked me if I was okay. I simply replied, "Yes." She squeezed my arm.
She started to say something and I stared over at the mass of medical people and quietly said, "Anaphylactic shock?"
She hugged me, I hugged her back but watched.
On TV, everything happens so that you the viewer can understand what is going on. Conversations are clear and concise. Not so here. I caught parts of sentences being uttered and someone repeating them. Another voice. And another all jumbled together.
For a moment the staff backed off and I stepped forward to touch Rich.
I glanced down at his arm where the chemo concoction had gone in. It was bright red with huge welts on it.
Hives.
I'd never seen hives like that before.
I backed away.
The Team stabilized him and then we moved to the ED where they put him on a bed.
Dr. R appeared and I walked with him back to the Infusion clinic to pick up the rest of my things. Both he and Jackie looked a bit distraught. I touched Dr. R's arm and told him it would be okay.
According to the literature there is a less than .001% chance of a severe reaction like this to the drug.
He couldn't have known. Funny thought, me trying to comfort a doctor?
Ronnie and Jackie asked me again if I was okay.
Was I okay? I didn't know. I had gone into my mode of emotional distancing or was it withdrawal? I would have done no good by breaking down and causing a scene.
End result. Rich is home today [Thursday], he feels fine. He doesn't recall most of the incident and he did very well today. He even ate like a champ. We made our radiation appointment and headed home.
As soon as we dropped our stuff off in the house, we both headed upstairs to take nice long restful naps.
Wednesday, May 20, 2015
Chemo Change from Cisplatin to Cetuximab
Yesterday was supposed to be the 4th treatment with Cisplatin.
Last week Rich had complained about some hearing issues he'd been having.
Immediately he'd been given a audiology test to check his hearing.
He was told that he had high tonal hearing loss, but the rest of his hearing was okay.
Dr. R and Dr A. along with some other specialist reviewed his case along with the results and decided that to continue with Cisplatin would be too risky. One side effect is hearing loss and apparently the test revealed severe high tonality loss. The doctors felt that continuing with Cisplatin could cause deafness.
So we are switching to Cetuximab also known as Erbitux today. So it will be like a 'first' time chemo treatment since the 'cocktail' has been changed. They will watch him for a while before he is released to go home.
Otherwise, his weight has maintained and he has not lost a lot of it. We talked about the pain of swallowing and Rich also received medication to ease that.
He is determined to eat and eat and never have to use the PEG or Miss Peggy as he calls her.
This is his goal and he is pretty determined.
Last night he was exhausted and decided that he was not going to eat at all ... maybe just graze a bit. He is still dealing with feelings of anger or frustration about the major changes in his life and how fatigued he feels.
I think that finding out that he wouldn't immediately bounce back after the treatments ended, has added to his feeling of loss of control.
He figured once everything was done, he'd bounce back to his formal self.
I tried to remind him last night that this was a major illness he was fighting and it would take time for recovery.
At the end of the week there are 15 radiation treatments. After today, there are 3 more chemo treatments.
Last week Rich had complained about some hearing issues he'd been having.
Immediately he'd been given a audiology test to check his hearing.
He was told that he had high tonal hearing loss, but the rest of his hearing was okay.
Dr. R and Dr A. along with some other specialist reviewed his case along with the results and decided that to continue with Cisplatin would be too risky. One side effect is hearing loss and apparently the test revealed severe high tonality loss. The doctors felt that continuing with Cisplatin could cause deafness.
So we are switching to Cetuximab also known as Erbitux today. So it will be like a 'first' time chemo treatment since the 'cocktail' has been changed. They will watch him for a while before he is released to go home.
Otherwise, his weight has maintained and he has not lost a lot of it. We talked about the pain of swallowing and Rich also received medication to ease that.
He is determined to eat and eat and never have to use the PEG or Miss Peggy as he calls her.
This is his goal and he is pretty determined.
Last night he was exhausted and decided that he was not going to eat at all ... maybe just graze a bit. He is still dealing with feelings of anger or frustration about the major changes in his life and how fatigued he feels.
I think that finding out that he wouldn't immediately bounce back after the treatments ended, has added to his feeling of loss of control.
He figured once everything was done, he'd bounce back to his formal self.
I tried to remind him last night that this was a major illness he was fighting and it would take time for recovery.
At the end of the week there are 15 radiation treatments. After today, there are 3 more chemo treatments.
Sunday, May 17, 2015
Half way through Chemo!
13 Radiation Treatments in, 20 left to go.
3 Chemo Infusions done, 3 left.
We are entering the 4th week of treatments. Rich was told by Dr. W of the UW that he would have a very difficult time swallowing by this time.
Indeed Rich does have a horrid time taking his medications. His mouth feels awfully dry all of the time and foods have begun to lose their normal taste.
This mostly from the throat radiation.
Yet Rich insists on continuing to eat small portions of food. Mini meals. He can't drink anything carbonated at this time as it burns his gums and throat to the point of tears.
Milkshakes and smoothies however go down nicely. The cool drink and the 'smoothness' of it slides right on down. We have fortified the drinks with protein powder and I am looking for some protein drinks to have along for anytime 'snacks'.
He ate a vegetable soup with hamburger in it the other night ... two small bowls and was delighted to eat it. Other meals include scrambled eggs with small chopped up bacon sprinkled with cheese.
He can still eat lightly toasted English muffins with a huge slather of homemade jelly on it.
My efforts at homemade jelly are really being appreciated at the moment.
How is his energy level? Awful. Dr. W. told him to rest and sleep ALL weekend because he'd be back at it come Monday.
He is exhausted, which we were told is normal for someone to have both radiation and chemotherapy at the same time. The effects of radiation will last up to ... or beyond 4 weeks after treatment stops.
Rich wasn't pleased with that information, but since his tumor on his lymph node can't be felt any more...and the one on his tonsil is 'pea' sized.
This godawful treatment is working.
His daughter and I keep concocting meals that are high in protein and carbs along with drinks that replenish what chemo takes out of him.
We are learning as we go and it isn't easy.
But we sure have the determination.
Which could only be possible with support from friends and family.
3 Chemo Infusions done, 3 left.
We are entering the 4th week of treatments. Rich was told by Dr. W of the UW that he would have a very difficult time swallowing by this time.
Indeed Rich does have a horrid time taking his medications. His mouth feels awfully dry all of the time and foods have begun to lose their normal taste.
This mostly from the throat radiation.
Yet Rich insists on continuing to eat small portions of food. Mini meals. He can't drink anything carbonated at this time as it burns his gums and throat to the point of tears.
Milkshakes and smoothies however go down nicely. The cool drink and the 'smoothness' of it slides right on down. We have fortified the drinks with protein powder and I am looking for some protein drinks to have along for anytime 'snacks'.
He ate a vegetable soup with hamburger in it the other night ... two small bowls and was delighted to eat it. Other meals include scrambled eggs with small chopped up bacon sprinkled with cheese.
He can still eat lightly toasted English muffins with a huge slather of homemade jelly on it.
My efforts at homemade jelly are really being appreciated at the moment.
How is his energy level? Awful. Dr. W. told him to rest and sleep ALL weekend because he'd be back at it come Monday.
He is exhausted, which we were told is normal for someone to have both radiation and chemotherapy at the same time. The effects of radiation will last up to ... or beyond 4 weeks after treatment stops.
Rich wasn't pleased with that information, but since his tumor on his lymph node can't be felt any more...and the one on his tonsil is 'pea' sized.
This godawful treatment is working.
His daughter and I keep concocting meals that are high in protein and carbs along with drinks that replenish what chemo takes out of him.
We are learning as we go and it isn't easy.
But we sure have the determination.
Which could only be possible with support from friends and family.
Wednesday, May 13, 2015
Meet with Docs and mega power meals
Good news.
His daughter took Rich this time for his Chemo treatment and she took the voice recorder.
So yesterday he found out that he only has three Chemo treatments left.
Halfway home with that!
And this Friday will be 13 Radiation Treatments under his belt. That means 20 left.
It is amazing that he is still swallowing and eating according to the doctors. Yes there is pain involved but he manages to eat.
Yesterday the doctors were amazed. He had actually gained a small amount of weight from their weigh in last week.
I listened to him brag on the 'cooking' of concoctions that I'd been making all along.
One dish I made was a layer of ground beef in a lasagna pan...extra ground up. A layer of cheddar cheese, a layer of mashed potatoes, more cheese and then topped with bacon.
Doesn't that just scream calories and carbs? Well even with a sore throat Rich as able to eat that.
We've also done a lot of scrambled eggs.
For snacks, I've made power drinks out of Ensure protein powder, yogurt, whole milk, malt flavor, fruits .. or chocolate, and ice cream.
Apparently these drinks go down like silk and he has up to 3 or 4 a day.
Today I will be making a soup that I can then blend slightly to make it easier to eat.
I'll freeze it in small packages. The cheesy scalloped homemade potato dish disappeared last night so that is another meal I can make.
Another postive note. Dr. W from UW said the tumors are receding. Yesterday Dr. R could 'see' the difference by looking in his throat.
These are all positive things. Yet Rich still is fatigued, weak, wobbly, and woozy.
After all, he had his Toxic Cocktail yesterday.
I am actually getting a break from being Care Giver. I think it was really needed.
Emotionally I am feeling better. I think a long nap will be in store for me tomorrow as it is supposed to rain most of the day.
Today the sun is shining and I think I have some things I'd like to do just for me.
His daughter took Rich this time for his Chemo treatment and she took the voice recorder.
So yesterday he found out that he only has three Chemo treatments left.
Halfway home with that!
And this Friday will be 13 Radiation Treatments under his belt. That means 20 left.
It is amazing that he is still swallowing and eating according to the doctors. Yes there is pain involved but he manages to eat.
Yesterday the doctors were amazed. He had actually gained a small amount of weight from their weigh in last week.
I listened to him brag on the 'cooking' of concoctions that I'd been making all along.
One dish I made was a layer of ground beef in a lasagna pan...extra ground up. A layer of cheddar cheese, a layer of mashed potatoes, more cheese and then topped with bacon.
Doesn't that just scream calories and carbs? Well even with a sore throat Rich as able to eat that.
We've also done a lot of scrambled eggs.
For snacks, I've made power drinks out of Ensure protein powder, yogurt, whole milk, malt flavor, fruits .. or chocolate, and ice cream.
Apparently these drinks go down like silk and he has up to 3 or 4 a day.
Today I will be making a soup that I can then blend slightly to make it easier to eat.
I'll freeze it in small packages. The cheesy scalloped homemade potato dish disappeared last night so that is another meal I can make.
Another postive note. Dr. W from UW said the tumors are receding. Yesterday Dr. R could 'see' the difference by looking in his throat.
These are all positive things. Yet Rich still is fatigued, weak, wobbly, and woozy.
After all, he had his Toxic Cocktail yesterday.
I am actually getting a break from being Care Giver. I think it was really needed.
Emotionally I am feeling better. I think a long nap will be in store for me tomorrow as it is supposed to rain most of the day.
Today the sun is shining and I think I have some things I'd like to do just for me.
Tuesday, May 12, 2015
Small Victories
Yesterday's visit with Radiology was quite surprising.
Rich's weight had only gone down 2 pounds since last Monday. The Radiology Nurse felt that it was a job well done considering the week before he'd lost 8 pounds in 4 days.
I was shocked myself but very pleased also. It meant we were doing something right.
I'd been making shakes out of fruits, yogurt, ice cream, ensure protein & calories booster powder, and milk. I'd made different blends and he'd been drinking a glassful of it whenever he felt like it.
I'd made home made macaroni and cheese and he'd eaten that in small meals whenever he wished. Frequent small meals.
Anything that he felt like, he grazed on. Sometimes it was good food like an apple, and sometimes it was not so great like a Hostess Cupcake.
His energy level still concerns me. He is so exhausted that he stays in bed almost all of the time. I was reading the side effects of Cisplatin and extreme fatigue was one of them. I'm not sure that staying in bed as many hours as he is, is healthy. It causes him to be more depressed or is it depression itself?
Hard to know.
But yesterday's visit was a positive one. Nurse coordinator Jackie from the UW told Rich as long as he could keep his weight up he didn't have to worry about the Jevity. Of course I got the smug glance from him! That is okay with me though. I thought I was doing the right thing, but since we'd kept him from losing more than 2 pounds, I figured it was a victory all the way around.
Rich's daughter had emailed me very early in the morning that she and the kids would be coming to visit in the afternoon.
She thought she'd take Rich for Chemo and Radiation today and let the kids stay with me.
I welcomed the company and the offer.
This is exactly what was needed for a Care Giver break. I get to do things with the grand children all day and rest a bit.
Steph and I worked most of the afternoon on trying to figure out what meals we could cook up for her Dad so that he could graze all day.
For supper I made a huge pot of spaghetti and some garlic bread. I cannot say enough how much of a pleasure it was to sit and eat with other folks.
Then Rich ate two small helpings and I felt like jumping up and down. Another mini victory.
Today is Radiation and Chemo day. Steph is an angel for coming to the farm and staying. She really saved my sanity.
Small Victories.
One day at a time.
Rich's weight had only gone down 2 pounds since last Monday. The Radiology Nurse felt that it was a job well done considering the week before he'd lost 8 pounds in 4 days.
I was shocked myself but very pleased also. It meant we were doing something right.
I'd been making shakes out of fruits, yogurt, ice cream, ensure protein & calories booster powder, and milk. I'd made different blends and he'd been drinking a glassful of it whenever he felt like it.
I'd made home made macaroni and cheese and he'd eaten that in small meals whenever he wished. Frequent small meals.
Anything that he felt like, he grazed on. Sometimes it was good food like an apple, and sometimes it was not so great like a Hostess Cupcake.
His energy level still concerns me. He is so exhausted that he stays in bed almost all of the time. I was reading the side effects of Cisplatin and extreme fatigue was one of them. I'm not sure that staying in bed as many hours as he is, is healthy. It causes him to be more depressed or is it depression itself?
Hard to know.
But yesterday's visit was a positive one. Nurse coordinator Jackie from the UW told Rich as long as he could keep his weight up he didn't have to worry about the Jevity. Of course I got the smug glance from him! That is okay with me though. I thought I was doing the right thing, but since we'd kept him from losing more than 2 pounds, I figured it was a victory all the way around.
Rich's daughter had emailed me very early in the morning that she and the kids would be coming to visit in the afternoon.
She thought she'd take Rich for Chemo and Radiation today and let the kids stay with me.
I welcomed the company and the offer.
This is exactly what was needed for a Care Giver break. I get to do things with the grand children all day and rest a bit.
Steph and I worked most of the afternoon on trying to figure out what meals we could cook up for her Dad so that he could graze all day.
For supper I made a huge pot of spaghetti and some garlic bread. I cannot say enough how much of a pleasure it was to sit and eat with other folks.
Then Rich ate two small helpings and I felt like jumping up and down. Another mini victory.
Today is Radiation and Chemo day. Steph is an angel for coming to the farm and staying. She really saved my sanity.
Small Victories.
One day at a time.
Friday, May 8, 2015
I'm Counting the Days Now...
Maybe I shouldn't count days, maybe I shouldn't look forward to when I can have a day for myself.
Yesterday was another extremely long day.
It started well. While I was doing chores, Rich started to feel nauseated and instead of taking his meds he waited until I came in.
Another side effect from Chemo hit him at the same time. Ewww...Diarrhea.
Not a pleasant subject but if we are talking about Cancer and everything associated with it, ... there it is.
I called the Infusion Hot Line and was told to give him his nausea meds and Imodium for the diarrhea.
I'd done the nausea meds and had argued with Mr. Patient about taking them. After talking to the nurse it got...
Done.
We were nearly late for our appointment and but the bouts of diarrhea held off for 4 hrs. He should have had another tablet after we got to the UW. Bad me, for not being able to keep everything straight and do all the driving and navigating from one place to another.
Mr. Patient and I got directed from the Infusion clinic to the ER at the VA. Fluids and anti nausea IV meds were given and there was a kind 'lecture' about keeping up on fluids AND the feeding.
Blood counts dropped from yesterday so it will be interesting to see how it is come Tuesday.
Our day spent at the UW, the VA ER, and travelling was from 9am to 6pm.
After we got home Rich went directly to bed. I was exhausted but went out to do chores anyway. Heck they needed to be done.
The yard is getting too long and shaggy.
I fed the animals and tried to figure out how quickly I could move everyone to summer pasture. It would cut down on my work by hours each day. And as tired as I was getting, that would be a great thing.
Rich had his first IV tube feeding. Actually it is just a gravity feeding to his PEG. He had been a pretty poor patient about taking extra nutrition through Miss Peggy.
As nurse Ronnie had said, if he didn't start being a bit more proactive in his eating and nutrition, they would admit him to hospital.
Naughty me, I thought ... in the back of my mind.
Oh! Really? Please do! I could use a couple of days to tend to all the things on the farm!
My Patient-husband can be a real grump and actually he has reason to.
He keeps telling anyone who will listen that he sure didn't bank on being knocked down by the Chemo like this.
Side effects from the Radiation Treatments will make their presence known soon.
The cancerous lymph node has gone from 3cm to 2cm. At least that is what the doctors are saying. This is good news to hang on to.
I checked the calendar and counted it up ~ after today:
25 more Radiation Treatments.
5 more Chemo Treatments.
Yesterday's lessons.
Have pull up adult diapers on hand in case...
Make sure patient takes his anti nausea pills and stays with it.
Make sure patient eats. Make sure patient takes Jevity.
Pack your car as if you were a pharmacy and add water bottles, clothes, and notepads.
For the CareGiver:
Go to bed. Sleep.
It is normal to be frustrated.
All the caregiver information I read is to get someone to come in and give you a break.
This isn't really possible when your day is taken up by travelling and farm chores.
But I will be addressing those issues very quickly.
Today is Friday. I hope it goes well.
Yesterday was another extremely long day.
It started well. While I was doing chores, Rich started to feel nauseated and instead of taking his meds he waited until I came in.
Another side effect from Chemo hit him at the same time. Ewww...Diarrhea.
Not a pleasant subject but if we are talking about Cancer and everything associated with it, ... there it is.
I called the Infusion Hot Line and was told to give him his nausea meds and Imodium for the diarrhea.
I'd done the nausea meds and had argued with Mr. Patient about taking them. After talking to the nurse it got...
Done.
We were nearly late for our appointment and but the bouts of diarrhea held off for 4 hrs. He should have had another tablet after we got to the UW. Bad me, for not being able to keep everything straight and do all the driving and navigating from one place to another.
Mr. Patient and I got directed from the Infusion clinic to the ER at the VA. Fluids and anti nausea IV meds were given and there was a kind 'lecture' about keeping up on fluids AND the feeding.
Blood counts dropped from yesterday so it will be interesting to see how it is come Tuesday.
Our day spent at the UW, the VA ER, and travelling was from 9am to 6pm.
After we got home Rich went directly to bed. I was exhausted but went out to do chores anyway. Heck they needed to be done.
The yard is getting too long and shaggy.
I fed the animals and tried to figure out how quickly I could move everyone to summer pasture. It would cut down on my work by hours each day. And as tired as I was getting, that would be a great thing.
Rich had his first IV tube feeding. Actually it is just a gravity feeding to his PEG. He had been a pretty poor patient about taking extra nutrition through Miss Peggy.
As nurse Ronnie had said, if he didn't start being a bit more proactive in his eating and nutrition, they would admit him to hospital.
Naughty me, I thought ... in the back of my mind.
Oh! Really? Please do! I could use a couple of days to tend to all the things on the farm!
My Patient-husband can be a real grump and actually he has reason to.
He keeps telling anyone who will listen that he sure didn't bank on being knocked down by the Chemo like this.
Side effects from the Radiation Treatments will make their presence known soon.
The cancerous lymph node has gone from 3cm to 2cm. At least that is what the doctors are saying. This is good news to hang on to.
I checked the calendar and counted it up ~ after today:
25 more Radiation Treatments.
5 more Chemo Treatments.
Yesterday's lessons.
Have pull up adult diapers on hand in case...
Make sure patient takes his anti nausea pills and stays with it.
Make sure patient eats. Make sure patient takes Jevity.
Pack your car as if you were a pharmacy and add water bottles, clothes, and notepads.
For the CareGiver:
Go to bed. Sleep.
It is normal to be frustrated.
All the caregiver information I read is to get someone to come in and give you a break.
This isn't really possible when your day is taken up by travelling and farm chores.
But I will be addressing those issues very quickly.
Today is Friday. I hope it goes well.
Thursday, May 7, 2015
We've Got Your Back!
We walked into the waiting room for Radiology. Our trip to MAD City was quiet. Rich slept, he was miserable but quiet.
After his treatment, we saw Dr. W, who felt the lymph node and commented that it was already receding. This was great news! I felt ecstatic. My husband-patient however was miserable still.
Dr. W mentioned that by next week Rich's mouth was going to start feeling the effects of the Radiation Treatments.
We made it to the VA with time to spare.
Rich's labs were good, his white count was fine...
Then we entered the Infusion Lab and when Ronnie the nurse asked Rich if he wanted water and went to get it, I followed her.
I told her what had been going on. I told her about 'nausea-not nausea argument' that we'd been having.
The way he got impatient with the Jevity and pushed it into his stomach and then the horrid diarrhea that he was experiencing.
I also mentioned that I thought he was hitting a major block of depression. "Well who wouldn't be, right?" I asked.
Ronnie told me that she'd address everything with him.
First thing she did was weigh him and then question him about what was going on. She was like a drill sergeant with her questions.
Finally she leaned back and said to him, "If you continue like this I will admit you to the hospital. I can do it today, if you like."
Rich shook his head.
Then Ronnie carefully explained that the anti nausea meds that are given intravenously with the chemo treatment last for 72 hours and everything he was telling her was right on for the nausea catching up to him and his refusal of taking his nausea meds only made things horribly worse.
She told him in no uncertain terms that he needed to have one can of Jevity EVERY night this week. Starting next week, two cans.
Any meals missed = one can of Jevity.
She arranged for us to receive 'Kangaroo' bags to put the Jevity in and hang from an IV pole.
Ronnie then explained that Jevity needed to drip in slowly to his stomach because if it was 'pushed' in, it would cause severe diarrhea.
Bingo.
Rich's impatience had contributed to his awful bout with that...
Ronnie suggested setting up the pole and bag, kicking back on the couch and watching a movie while his liquid 'gold' dripped into his stomach.
Ronnie went on to say that he needed to get out every day and take a small walk of some kind. He needed to have fresh air and see the clouds and sun.
One word about Ronnie. She is kind, sweet, and overflowing with compassion regarding her patients, she cares for them and it shows in her eyes. She knows how to be a hardass when it is warranted. And she knows how to deal with Veterans.
She is priceless.
She told him that IF at any time he couldn't eat, or he couldn't control his nausea, that HE should call the Oncology number we had 24 hrs a day and a nurse would get back to him.
Not only that, we were next door at the UW Carbone Cancer Center 5 times a week...so...
IF he felt ill any day, come immediately to the Infusion Clinic and they'd make room for him.
What we had been going through could have been avoided.
Boy, did I feel like a dumb-ass. I told Ronnie that. She shrugged and told me that I was normal. This cancer treatment thing had a learning curve.
Rich had been dehydrated and sorely needed the IV hydration that he was given first. He really perked up with that and ate pudding and drank juices and ice water.
Ronnie was busy making phone calls around the VA and even got us in to see a Mental Health Counselor before we went home.
We made the trip home after an 8 hour day spent at two hospitals and clinics.
One of the things I won't go into here is all of the different medications Rich is getting. Each person is so different in what kind of cancer they may have and what will be given to them.
As we were told by the Nutritionist yesterday, there is such a delicate balance of trying to make the patient as comfortable as possible during treatment. Medications would be changed and adjusted according to how the patient was doing.
It may also be important to bring along a voice recorder so both the cancer patient and the CareGiver can review what was said. I have found that to be priceless. I haven't run across a nurse or doctor yet who wouldn't let me use it.
We spent an hour with a counselor who helped address the Depression issues.
Day 6 of radiation completed. Day 2 of Chemo completed.
8 days into treatment.
Most of all, don't lose hope and know that if you are getting treatment, there are people who will have your back. I imagine this is true for nearly any oncology clinic.
I think this was the most important thing I learned yesterday and it was such a relief.
Thursday, April 30, 2015
First Day of Chemo and Rad
What a wonderful daughter Rich has. Stephanie came Monday night to our house and then stayed over night and helped me with chores in the morning.
She then took her dad to the MAD VA and went with him through all of his appointments.
Chemo took hours to do and she took notes for me, asked questions and even updated our Gmail Calendar with new appointments. What a fantastic way to share information!
After his long day, she took him home to her house. They met me at the UW Carbone Cancer Center today where I picked him up and brought him home.
Our schedule for Rad will be slightly different each week, so no set time...it will change each week.
Next week the times vary at least 3 times.
Rich had a medication in his Chemotherapy that is for nausea. One of the side effects is that it could make the patient euphoric or a bit moody.
Oh wow, talk about having someone who is ... like on speed! He talked volumes louder and was almost obnoxious about telling me how to drive. He rambled on about things ... he was talking faster than I was driving.
Yep, our first chemo experience was enlightening. Next week I'll talk to the nurses in the infusion clinic and ask them if this is abnormal.
He had his second radiation today and had forgotten to take his anxiety meds. He said it was the longest 15 minutes of his life.
We stopped to eat lunch at Grandma's Cafe in Arena, WI. By the way, if you ever travel Highway 14 from Madison...stop there. It is good food and served right!
We'll be up at 5:30 A.M. tomorrow to get the ball rolling. Monday through Friday we have appointments at unexpected times to be determined by the VA and the UW Carbone Cancer Center each week.
One of the best things I did is to have Rich sign a sheet giving the VA permission to share medical information with Steph about her dad and let her have input on appointments.
Yesterday Steph took her dad to his first appointments for Chemo and Radiation. I had the day to myself. I had a delivery, a doctor's appointment, and I treated myself to a hair cut.
Then I sat outside in a lawn chair after chores and listened to the birds sing while Morris wandered around.
Life is good ... considering.
She then took her dad to the MAD VA and went with him through all of his appointments.
Chemo took hours to do and she took notes for me, asked questions and even updated our Gmail Calendar with new appointments. What a fantastic way to share information!
After his long day, she took him home to her house. They met me at the UW Carbone Cancer Center today where I picked him up and brought him home.
Our schedule for Rad will be slightly different each week, so no set time...it will change each week.
Next week the times vary at least 3 times.
Rich had a medication in his Chemotherapy that is for nausea. One of the side effects is that it could make the patient euphoric or a bit moody.
Oh wow, talk about having someone who is ... like on speed! He talked volumes louder and was almost obnoxious about telling me how to drive. He rambled on about things ... he was talking faster than I was driving.
Yep, our first chemo experience was enlightening. Next week I'll talk to the nurses in the infusion clinic and ask them if this is abnormal.
He had his second radiation today and had forgotten to take his anxiety meds. He said it was the longest 15 minutes of his life.
We stopped to eat lunch at Grandma's Cafe in Arena, WI. By the way, if you ever travel Highway 14 from Madison...stop there. It is good food and served right!
We'll be up at 5:30 A.M. tomorrow to get the ball rolling. Monday through Friday we have appointments at unexpected times to be determined by the VA and the UW Carbone Cancer Center each week.
One of the best things I did is to have Rich sign a sheet giving the VA permission to share medical information with Steph about her dad and let her have input on appointments.
Yesterday Steph took her dad to his first appointments for Chemo and Radiation. I had the day to myself. I had a delivery, a doctor's appointment, and I treated myself to a hair cut.
Then I sat outside in a lawn chair after chores and listened to the birds sing while Morris wandered around.
Life is good ... considering.
Wednesday, April 29, 2015
Helicopters and Chemo
Yesterday we drove to Madison for some appointments.
We got there and made it to the first one.
When we checked in for the second one with the Chemo doctors, Rich was asked if he had his labs.
No.
It wasn't on our sheet nor was it scheduled. Well things went a bit wacky after that.
When we got in the room with Dr. R. we were told that they may be starting chemo today...
or
tomorrow.
But from now on, after this first treatment Chemotherapy would be on Tuesdays,...
but...
they were still awaiting to hear from the Radiation folks.
Two different hospitals are involved in this treatment. Communication between the two seems to be a bit...well...
difficult...even though they are connected to each other by walk ways, they are two different entities.
Even though UW doctors rotate through the VA Hospital and clinics, they still are two separate entities.
There is quite a bit of 'red' tape to cut through when dealing with the VA and non VA hospitals.
Eventually our Care Coordinator Gabe got down to brass tacks. He took us to the Chemo Clinic or Infusion Clinic to meet the nurses.
While Nurse Ronnie explained what to expect Gabe worked on getting a time for Radiation Therapy from the University Hospital.
During the time that we were sitting there, a Flight for Life helicopter hovered nearby to land at the UW.
When Rich is emotional this is a trigger for his PTSD.
Suddenly he went quiet, whispered "Chopper," and stared down at his hands which shook.
Ronnie and I looked at each other. I saw on her face that she understood what was happening.
In a few moments it was over and we got back to our discussion. The infusion clinic is nice and spacious. There is a snack bar, and each infusion room has comfortable chairs for family to be with the patient. And there is Wifi!
Finally we were ushered out of the clinic with appointment times. 11am, Dental, 12pm Chemo, 3pm Radiation.
Then his daughter will be taking him home to her house where he will stay tonight and then tomorrow I meet him at the Radiation Clinic.
We are beginning to start a routine. Each week before chemo we have to do labs. 5 days a week will be radiation.
I am reaching out to a couple of neighbors to cook some meals for us. I'm finding that long days are not good for making decent meals.
I've looked at the 5 day week with fresh eyes. We'll see if working Saturday and Sunday are going to work. I feel it won't work out really well if I am not able to keep up on house chores, groceries, and those small mundane things we all take for granted.
Something has to give.
Now just to figure out the schedule for feeding animals...
We got there and made it to the first one.
When we checked in for the second one with the Chemo doctors, Rich was asked if he had his labs.
No.
It wasn't on our sheet nor was it scheduled. Well things went a bit wacky after that.
When we got in the room with Dr. R. we were told that they may be starting chemo today...
or
tomorrow.
But from now on, after this first treatment Chemotherapy would be on Tuesdays,...
but...
they were still awaiting to hear from the Radiation folks.
Two different hospitals are involved in this treatment. Communication between the two seems to be a bit...well...
difficult...even though they are connected to each other by walk ways, they are two different entities.
Even though UW doctors rotate through the VA Hospital and clinics, they still are two separate entities.
There is quite a bit of 'red' tape to cut through when dealing with the VA and non VA hospitals.
Eventually our Care Coordinator Gabe got down to brass tacks. He took us to the Chemo Clinic or Infusion Clinic to meet the nurses.
While Nurse Ronnie explained what to expect Gabe worked on getting a time for Radiation Therapy from the University Hospital.
During the time that we were sitting there, a Flight for Life helicopter hovered nearby to land at the UW.
When Rich is emotional this is a trigger for his PTSD.
Suddenly he went quiet, whispered "Chopper," and stared down at his hands which shook.
Ronnie and I looked at each other. I saw on her face that she understood what was happening.
In a few moments it was over and we got back to our discussion. The infusion clinic is nice and spacious. There is a snack bar, and each infusion room has comfortable chairs for family to be with the patient. And there is Wifi!
Finally we were ushered out of the clinic with appointment times. 11am, Dental, 12pm Chemo, 3pm Radiation.
Then his daughter will be taking him home to her house where he will stay tonight and then tomorrow I meet him at the Radiation Clinic.
We are beginning to start a routine. Each week before chemo we have to do labs. 5 days a week will be radiation.
I am reaching out to a couple of neighbors to cook some meals for us. I'm finding that long days are not good for making decent meals.
I've looked at the 5 day week with fresh eyes. We'll see if working Saturday and Sunday are going to work. I feel it won't work out really well if I am not able to keep up on house chores, groceries, and those small mundane things we all take for granted.
Something has to give.
Now just to figure out the schedule for feeding animals...
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