As we reach the end of week 3 (post treatment), I am amazed at how far Dan has come and equally amazed at how far he has yet to go.
We have our first regularly scheduled (i.e. non-emergency) appointment on Tuesday, it will be good to see what his medical team thinks of his recovery.
Food and calories are still an issue. He is sustaining, and has been for weeks, on vanilla protein shakes. He has added soft poached eggs to the mix and a little soup on occasion. The two Cindys from book group each made Dan some wonderful soups to try.
Dan's mom, Carol, came to spend the weekend and will be with us through Tuesday. It's been very nice to have here. Dan doesn't get outside of the house often, so having a weekend visitor has been really nice and it's been nice to have someone share in the day to day household events.
The original plan was for Carol to stay with Dan while I took Alex to a soccer tournament. However, unfortunately for Alex, the heavy rains put the soccer fields under water and the tournament was canceled.
He ended up having a great weekend, regardless, he was able to watch his old team play at a different tournament and he also went to a cub scout party. Tomorrow he leaves for the dells to celebrate a friend's birthday.
Sam left on Saturday morning to enjoy a birthday slumber party weekend in Door County. It sounds like she is having a great time.
Margaret
Sunday, August 26, 2007
Wednesday, August 22, 2007
Wednesday - August 22nd - Recovery Day 16
Dan had a good day today, which was well deserved. And, it was also a big change from how the week started.
Monday night had us in the E.R. at St. Mary's. Dan had been experiencing elbow pain over the weekend. On Monday night his elbow became swollen, very red and he had limited movement. When I paged his chemo doctor, I was told to get Dan to an Emergency Room A.S.A.P. for IV antibiotics. His concern was that Dan had taken on a staph infection.
We went to the E.R., with kids in tow. It was a long night. The nurse put in an IV and Dan told her it didn't feel right and it gave him a stinging sensation. She was flippant about this concern and told him that was a common reaction to an IV antibiotic infusion. Dan was too tired to voice further concern. I didn't push any further, which I quickly regretted.
I had to run the kids home as it got quite late. I came back within 30 minutes and Dan's arm was quite swollen. After the antibiotic was dripped slowly, they were giving Dan a very fast infusion for hydration and the fluid was filling Dan's arm up and not going into his veins.
Arrgghhh!!! I was not happy to return and see Dan in even MORE pain than when I had left him. :-( I thought I was leaving Dan in good hands and I made sure his nurse knew I was leaving. I was quite disappointed that his treatment wasn't monitored regularly. And, to add additional frustration to the pile, there was not a quick response to Dan's call button plea for help.
Another person put in a line into Dan's other arm and we got a new nurse...and, more antibiotics as no one knows how much went into Dan's veins and how much did not. When they had the line in right, the IV fluid did not sting. Overall, it was a long and frustrating night.
Dan was very tired. When I dropped the kids off at home (or tried to) Sam decided she would not sleep until we returned so she came back to the hospital with me. Alex had to stay home as he had an early morning soccer camp and couldn't afford to stay up all night. As we waited for Dan to get his 2nd round of infusions, Dan was able to dose on and off while Sam and I quietly played cards together at the foot of his bed.
Tuesday, Dan worked on recovering from Monday night. His right elbow (the area infected) and his left arm (the area inadvertently pumped with fluids) were very painful. We saw his GP later in the day. He drew an ink line on Dan's arm to indicate how far the red area on Dan's elbow could grow before they would be concerned about needing to switch antibiotics. Dan's red patch grew pretty close to that area, and then thankfully started to recede today.
When we were at his GP's office he also did a swab test on some additional sores on Dan's arms. We will get the results of that test tomorrow. His GP was wonderful about offering assistance and compassion to both Dan and I.
Today, Dan is able to move both of his arms freely. His tongue is starting to heal. Swallowing is still an effort, but is slowly improving. The thick stringy mucous is starting to be intermittent instead of a 24/7 annoyance. His taste buds are still altered. Dry mouth is becoming more persistent. His voice has the range of a whisper to a soft gravelly sound. On a high note, Dan is down 40 mg of pain medication...going from 100mg to 60mg in a 24 hour a period.
He tried two soups in the past two days. One was cream of chicken and the other was cheese. The cheese soup had spices in it that were hard on his tongue.. Unfortunately, the soups are less calorie dense than his protein supplements and a small cup fills him up quickly. However, he needs the break. He has been sustaining on vanilla protein supplements for a long time and he is growing tired of them.
Hopefully, he will be able to tolerate more foods soon. He is supposed to be getting 2400 to 3000 calories a day...and, we can't seem to get him over 1500 per day. He is getting very thin.
Margaret
Monday night had us in the E.R. at St. Mary's. Dan had been experiencing elbow pain over the weekend. On Monday night his elbow became swollen, very red and he had limited movement. When I paged his chemo doctor, I was told to get Dan to an Emergency Room A.S.A.P. for IV antibiotics. His concern was that Dan had taken on a staph infection.
We went to the E.R., with kids in tow. It was a long night. The nurse put in an IV and Dan told her it didn't feel right and it gave him a stinging sensation. She was flippant about this concern and told him that was a common reaction to an IV antibiotic infusion. Dan was too tired to voice further concern. I didn't push any further, which I quickly regretted.
I had to run the kids home as it got quite late. I came back within 30 minutes and Dan's arm was quite swollen. After the antibiotic was dripped slowly, they were giving Dan a very fast infusion for hydration and the fluid was filling Dan's arm up and not going into his veins.
Arrgghhh!!! I was not happy to return and see Dan in even MORE pain than when I had left him. :-( I thought I was leaving Dan in good hands and I made sure his nurse knew I was leaving. I was quite disappointed that his treatment wasn't monitored regularly. And, to add additional frustration to the pile, there was not a quick response to Dan's call button plea for help.
Another person put in a line into Dan's other arm and we got a new nurse...and, more antibiotics as no one knows how much went into Dan's veins and how much did not. When they had the line in right, the IV fluid did not sting. Overall, it was a long and frustrating night.
Dan was very tired. When I dropped the kids off at home (or tried to) Sam decided she would not sleep until we returned so she came back to the hospital with me. Alex had to stay home as he had an early morning soccer camp and couldn't afford to stay up all night. As we waited for Dan to get his 2nd round of infusions, Dan was able to dose on and off while Sam and I quietly played cards together at the foot of his bed.
Tuesday, Dan worked on recovering from Monday night. His right elbow (the area infected) and his left arm (the area inadvertently pumped with fluids) were very painful. We saw his GP later in the day. He drew an ink line on Dan's arm to indicate how far the red area on Dan's elbow could grow before they would be concerned about needing to switch antibiotics. Dan's red patch grew pretty close to that area, and then thankfully started to recede today.
When we were at his GP's office he also did a swab test on some additional sores on Dan's arms. We will get the results of that test tomorrow. His GP was wonderful about offering assistance and compassion to both Dan and I.
Today, Dan is able to move both of his arms freely. His tongue is starting to heal. Swallowing is still an effort, but is slowly improving. The thick stringy mucous is starting to be intermittent instead of a 24/7 annoyance. His taste buds are still altered. Dry mouth is becoming more persistent. His voice has the range of a whisper to a soft gravelly sound. On a high note, Dan is down 40 mg of pain medication...going from 100mg to 60mg in a 24 hour a period.
He tried two soups in the past two days. One was cream of chicken and the other was cheese. The cheese soup had spices in it that were hard on his tongue.. Unfortunately, the soups are less calorie dense than his protein supplements and a small cup fills him up quickly. However, he needs the break. He has been sustaining on vanilla protein supplements for a long time and he is growing tired of them.
Hopefully, he will be able to tolerate more foods soon. He is supposed to be getting 2400 to 3000 calories a day...and, we can't seem to get him over 1500 per day. He is getting very thin.
Margaret
Sunday, August 19, 2007
Sunday - August 19th
Dan is at the point in this process where he is tired of being tired...and tired of not feeling well...and tired of not being able to eat...and tired of the thick mucous that is taking over his mouth and throat...
From an outsider's perspective he looks so much better than he did the week following all of the treatments. Although, now that treatments are complete, he just wants everything to return to normal.
For now, calorie intake remains a struggle. He lost 4 pounds over the weekend and does not want to return to getting daily IVs. He is determined to do this on his own.
Friday he had a nice day, with 2 separate visits from friends, Jeff and Ray. Also, on Friday, Sam returned home from camp briefly...long enough to take a shower and get ready for a special sleepover at the barn where she leases her horse. Sam enjoyed both experiences.
Sam's tent was the one in the middle
Sam organizing her school supplies
On Saturday, I took each of the kids out on their own (while the other stayed home with Dan) and we finished school supply shopping. Once home, they each spread everything out, labeled and organized all of their items and packed them up neatly for the trip to school on Wednesday. That's when they get their locker and class assignments. Saturday night, all 4 of us went out with our umbrellas and took a walk with the neighbor dog in the cold rain. Where did the summer go?
Alex and his school supplies
Sunday we all slept late. I guess we are all tired from everything that has gone on. The gray skies and gently rain made it easy to hit the snooze button. My dad came to pick up a laptop that he had lent, and while here he went with me to pick Sam up at the stables. He met some of the very friendly horses...he gave a treat to the one in this picture and the horse was checking his pockets to make sure there wasn't more. :-)
Dad and a hungry horse
Sam and Mick
Monday is begins a new week and we're hoping that many of the symptoms that Dan has been struggling with should start to ease up this week.
Margaret
From an outsider's perspective he looks so much better than he did the week following all of the treatments. Although, now that treatments are complete, he just wants everything to return to normal.
For now, calorie intake remains a struggle. He lost 4 pounds over the weekend and does not want to return to getting daily IVs. He is determined to do this on his own.
Friday he had a nice day, with 2 separate visits from friends, Jeff and Ray. Also, on Friday, Sam returned home from camp briefly...long enough to take a shower and get ready for a special sleepover at the barn where she leases her horse. Sam enjoyed both experiences.
Sam's tent was the one in the middle
Sam organizing her school suppliesOn Saturday, I took each of the kids out on their own (while the other stayed home with Dan) and we finished school supply shopping. Once home, they each spread everything out, labeled and organized all of their items and packed them up neatly for the trip to school on Wednesday. That's when they get their locker and class assignments. Saturday night, all 4 of us went out with our umbrellas and took a walk with the neighbor dog in the cold rain. Where did the summer go?
Alex and his school suppliesSunday we all slept late. I guess we are all tired from everything that has gone on. The gray skies and gently rain made it easy to hit the snooze button. My dad came to pick up a laptop that he had lent, and while here he went with me to pick Sam up at the stables. He met some of the very friendly horses...he gave a treat to the one in this picture and the horse was checking his pockets to make sure there wasn't more. :-)
Dad and a hungry horse
Sam and MickMargaret
Thursday, August 16, 2007
Thursday - August 16th
Future updates will be on Wednesdays and Sundays. Healing is a slow process, and looking for improvements that seem to be there one day and aren't the next, is a frustrating process.
Today, Dan did ok. He had a Froedtert-free week, I did not. I had to make a trip in to pick up an Rx for Dan's pain pills. Apparently, a doctor can't call in a prescription for narcotics. I'm sure some people, somewhere abused the system enough to require the rule. It was the first time I went to Froedtert without Dan and I had to go to the radiation department to pick it up. As I looked at the sad faces of patients and caregivers sitting in the waiting area, my stomach felt sick. It is not a fun place to be and returning does not bring any pleasant memories.
I wanted to talk to someone from Dan's team at Froedtert, but I just picked up the waiting prescription and left. I did not want to be there.
I did talk to one of Dan's NP's by phone after I got home. I had a several questions.
Q. Why does Dan's esophagus hurt when he tries to swallow?
A. Could be that there is a lot of blisters and swelling in the area, could be a stricture. Not entirely uncommon. Should go away on it's own, otherwise they would do a dilation. The area is too sore to dilate now.
Q. Should we continue the IV hydration after Friday? Dan is feeling so full working on his 2 carnation VHCs that I am concerned that if he has to rely on getting all of his fluids orally, he won't be able to get his calories down. Although, Dan no longer wants the IVs.
A. We can stop over the weekend, and reassess on Monday. If necessary, he can get hydrated at Froedtert on Saturday or Sunday. Bottom line, though, in two days he can't get into too much trouble.
Q. WHEN are things going to get better????
A. Tongue, appetite, swallowing, energy, pain, ability to speak, thick mucous....for each item listed, it could be weeks to months everyone is different.
Q. Why is he still sweating, isn't the chemo out of his system yet?
A. The chemo starts to leave at the end of each week, although it doesn't leave all at once. Sweating could continue....weeks to months, everyone is different.
Q. Why is Dan breaking out in a non-chemo rash?
A. Could be many reasons, chemo and radiation do a lot of different things to a body. The Whey Protein and new supplements could be the cause. He could be having a reaction to the detergent or soaps that he tolerated fine weeks ago. He could be having a reaction to something we may never figure out. Bottom line, give him Benedryl and get rid of the rash. Start supplements over, one at a time and see if they are contributing factors.
Dan's neck has been healing wonderfully and true to their word, his new skin is amazing. Earlier this week, the areas that were healing were so tight it looked painful, and now they look fine. I keep hoping the insides of Dan's mouth and neck are healing as brilliantly as the outside.
Dan also took another 15 minute walk with me at the park. He's committed to doing it daily. I like that. If I scrolled down, I could likely find the date that Dan started to get hit hard from the treatments and gave up walking. I don't think it was that long ago. Weeks, not months, yet it feels like years.
Alex's soccer team has been scrimmaging other teams much of this week in preparation for his upcoming soccer tournament which is the 24th and 25th of this month. I am amazed we are already into soccer season.
We look forward to Sam's calls every evening, she is having a blast being a jr. counselor at camp. She sounded really tired tonight. And, then on an even later night call she sounded worried. Another jr. counselor had disappeared and she said everyone looked for her for 2 hours. Turns out the missing girl had fallen asleep in her tent. At least she was safe.
The camp is a day camp for the younger girls. And, a partial overnight camp for the jr. counselors. I think they slept at the camp Sunday, Monday and tonight. The other nights, Sam stayed at her cousin's house, which is much closer to the campgrounds.
This picture is from pirate day at camp. The girl's are with Stacy's dog, Riley, who often blogs about life as a dog.
http://thelifeofrileydog.blogspot.com/
He's a pretty funny writer.
Margaret
Today, Dan did ok. He had a Froedtert-free week, I did not. I had to make a trip in to pick up an Rx for Dan's pain pills. Apparently, a doctor can't call in a prescription for narcotics. I'm sure some people, somewhere abused the system enough to require the rule. It was the first time I went to Froedtert without Dan and I had to go to the radiation department to pick it up. As I looked at the sad faces of patients and caregivers sitting in the waiting area, my stomach felt sick. It is not a fun place to be and returning does not bring any pleasant memories.
I wanted to talk to someone from Dan's team at Froedtert, but I just picked up the waiting prescription and left. I did not want to be there.
I did talk to one of Dan's NP's by phone after I got home. I had a several questions.
Q. Why does Dan's esophagus hurt when he tries to swallow?
A. Could be that there is a lot of blisters and swelling in the area, could be a stricture. Not entirely uncommon. Should go away on it's own, otherwise they would do a dilation. The area is too sore to dilate now.
Q. Should we continue the IV hydration after Friday? Dan is feeling so full working on his 2 carnation VHCs that I am concerned that if he has to rely on getting all of his fluids orally, he won't be able to get his calories down. Although, Dan no longer wants the IVs.
A. We can stop over the weekend, and reassess on Monday. If necessary, he can get hydrated at Froedtert on Saturday or Sunday. Bottom line, though, in two days he can't get into too much trouble.
Q. WHEN are things going to get better????
A. Tongue, appetite, swallowing, energy, pain, ability to speak, thick mucous....for each item listed, it could be weeks to months everyone is different.
Q. Why is he still sweating, isn't the chemo out of his system yet?
A. The chemo starts to leave at the end of each week, although it doesn't leave all at once. Sweating could continue....weeks to months, everyone is different.
Q. Why is Dan breaking out in a non-chemo rash?
A. Could be many reasons, chemo and radiation do a lot of different things to a body. The Whey Protein and new supplements could be the cause. He could be having a reaction to the detergent or soaps that he tolerated fine weeks ago. He could be having a reaction to something we may never figure out. Bottom line, give him Benedryl and get rid of the rash. Start supplements over, one at a time and see if they are contributing factors.
Dan's neck has been healing wonderfully and true to their word, his new skin is amazing. Earlier this week, the areas that were healing were so tight it looked painful, and now they look fine. I keep hoping the insides of Dan's mouth and neck are healing as brilliantly as the outside.
Dan also took another 15 minute walk with me at the park. He's committed to doing it daily. I like that. If I scrolled down, I could likely find the date that Dan started to get hit hard from the treatments and gave up walking. I don't think it was that long ago. Weeks, not months, yet it feels like years.
Alex's soccer team has been scrimmaging other teams much of this week in preparation for his upcoming soccer tournament which is the 24th and 25th of this month. I am amazed we are already into soccer season.
We look forward to Sam's calls every evening, she is having a blast being a jr. counselor at camp. She sounded really tired tonight. And, then on an even later night call she sounded worried. Another jr. counselor had disappeared and she said everyone looked for her for 2 hours. Turns out the missing girl had fallen asleep in her tent. At least she was safe.
The camp is a day camp for the younger girls. And, a partial overnight camp for the jr. counselors. I think they slept at the camp Sunday, Monday and tonight. The other nights, Sam stayed at her cousin's house, which is much closer to the campgrounds.
This picture is from pirate day at camp. The girl's are with Stacy's dog, Riley, who often blogs about life as a dog.
http://thelifeofrileydog.blogspot.com/
He's a pretty funny writer.
Margaret
Wednesday, August 15, 2007
Wednesday - August 15
Dan had a great day today. He maintained yesterday's weight, his thrush is starting to clear, and in general, he's feeling better.
Swallowing is still uncomfortable...he says the liquid protein drink feels as though it is getting stuck in his esophagus. However, he persevered and got a very soft boiled egg down...his first "solid" food since early August. He didn't enjoy it, but he got it down. Enjoyment will come later. Right now, it's all about taking in what he needs to heal.
This evening, after Alex went to soccer and while Sam was still away at camp, Dan and I drove to a park to take a walk.
It felt really nice to be outside with him. (Outside of the treatments at the hospital, Dan has not been outside for many weeks)
He's feeling a little self conscious about running into people he knows, I think it's because he feels worse than he looks...as a result...he thinks he looks worse than he does. From my perspective, Dan doesn't look like he just spent seven weeks getting knocked around by chemo and radiation. I think he looks pretty darn good.
Even the weight loss suits him. Although, should he ever want to loose weight again, clearly there are better options.
I am hoping last week was the rock bottom and that the healing will be steady and swift from this point on.
Margaret
Swallowing is still uncomfortable...he says the liquid protein drink feels as though it is getting stuck in his esophagus. However, he persevered and got a very soft boiled egg down...his first "solid" food since early August. He didn't enjoy it, but he got it down. Enjoyment will come later. Right now, it's all about taking in what he needs to heal.
This evening, after Alex went to soccer and while Sam was still away at camp, Dan and I drove to a park to take a walk.
It felt really nice to be outside with him. (Outside of the treatments at the hospital, Dan has not been outside for many weeks)
He's feeling a little self conscious about running into people he knows, I think it's because he feels worse than he looks...as a result...he thinks he looks worse than he does. From my perspective, Dan doesn't look like he just spent seven weeks getting knocked around by chemo and radiation. I think he looks pretty darn good.
Even the weight loss suits him. Although, should he ever want to loose weight again, clearly there are better options.
I am hoping last week was the rock bottom and that the healing will be steady and swift from this point on.
Margaret
Tuesday, August 14, 2007
Tuesday - August 14
Today, Dan had a therapy dog. Our friends needed a dog sitter and Dan needed a snuggly dog. :-)
It was a better day for Dan than yesterday.
We are experimenting with incorporating some new suggestions into his day...whey powder (for added calories), glutamine (to promote healing of his tongue, mouth, throat and esophagus), and carnatine (for radiation fatigue). It's all stuff that needs to be mixed into fluids and taken orally. As a result, he wasn't able to get much down today....although, he seems motivated to keep
trying.
Even though Dan wasn't able to hit all of the goals with the new supplements, he did finally get that 3rd protein drink down today, and it stayed down. :-) That was a huge deal. Hopefully, soon, he will work up to the 6 per day he needs to maintain his weight.
Alex is having a great time practicing with his new soccer team. And, Sammy is having a fun time with her cousin at camp. I am glad they are enjoying themselves as the first day of school is only three weeks away.
Margaret
Monday, August 13, 2007
Monday - August 13 - A bump in the road
Drats, Dan got thrush again tonight. :-(
He was very tired today.
He is still loosing one pound a day...he takes in two cans of nutrition a day...he should be taking in six. Tonight, I pushed another 1/2 can on him because he needs it. It made him get sick. :-(
I spoke to his NP and nutritionist today. They are working with me to try to figure out how to stabilize his weight. His NP told me Dan might not reach his starting treatment weight ever again. And, that gaining weight will be a challenge for him for the next couple of years. Loosing weight hinders the healing process. For now, we're just trying to figure out how to hold onto the pounds he has.
Yesterday, it was such a nice day for Dan. I am hoping that tomorrow will be one too.
It's a long, slow healing process after chemo and radiation.
I was bummed today because I felt like yesterday Dan went one step forward and today he took two steps back. Although, we're still in the dreaded 2-week post treatment period that we were warned about every week. So, perhaps soon, he will start to have more good days than bad.
And, on a nice note, the home IV hydration is working out very well. And, it's comforting to know that with all the things we are supposed to be on the lookout for, dehydration isn't one of them.
Margaret
He was very tired today.
He is still loosing one pound a day...he takes in two cans of nutrition a day...he should be taking in six. Tonight, I pushed another 1/2 can on him because he needs it. It made him get sick. :-(
I spoke to his NP and nutritionist today. They are working with me to try to figure out how to stabilize his weight. His NP told me Dan might not reach his starting treatment weight ever again. And, that gaining weight will be a challenge for him for the next couple of years. Loosing weight hinders the healing process. For now, we're just trying to figure out how to hold onto the pounds he has.
Yesterday, it was such a nice day for Dan. I am hoping that tomorrow will be one too.
It's a long, slow healing process after chemo and radiation.
I was bummed today because I felt like yesterday Dan went one step forward and today he took two steps back. Although, we're still in the dreaded 2-week post treatment period that we were warned about every week. So, perhaps soon, he will start to have more good days than bad.
And, on a nice note, the home IV hydration is working out very well. And, it's comforting to know that with all the things we are supposed to be on the lookout for, dehydration isn't one of them.
Margaret
Sunday, August 12, 2007
Sunday - August 12th - A really GREAT day!
What a difference hydration and wound care can make!!This past week has been a rough one for Dan, so I am excited to report his recent progress. Three days of IV fluids has made a huge difference. There are now nine days between him and the radiation equipment, Dan's burns are healing nicely and his voice is slowly starting to return.
Today was a special day as Dan had the opportunity to enjoy the company of his brother, Tom. It was nice to see the two of them together. Tom's presence boosted Dan's spirits immensely. Tom was a terrific big brother. He talked with Dan when he was able, he sat with him when he was tired, and they watched the Brewer's game together.
Tom was in town while his wife and daughter went to a wedding shower. After the shower, Deb and Meggie stopped by, it was nice to see them as well.Pictured above is Tom, Alex, Dan, Meggie and Deb.
It's been awhile since Dan has been up for visitors, it was great to see him surrounded by family.
While Tom and Dan spent the day visiting, my sister, Cheryl, came to pick up Sammy for another camp. Sammy and her cousin, Stacy, are going to be junior counselors at a girl scout camp. My sister is taking the week off of work at Froedtert to be at the camp as well. We are hoping they have a great time.Tomorrow is a Monday...and, our fist NON-chemo Monday in quite some time. That's a great thing. And, Dan will continue to receive IV fluids through the Visiting Nurse service during the week. That's another great thing.
We are ready for a Froedtert-free week!
Margaret
Saturday, August 11, 2007
Saturday - August 11th
It was a nice Saturday. The Visiting Nurse was wonderful. Dan has been knocked down by the treatments and spending most of his time in bed, so it was great to see him get up and come downstairs for the IV hydration.
Dan still feels like he's been hit by a train, although I think the hydration has made a huge difference. I slept better last night just knowing that he is going to be getting extra hydration all week.
Next, we'll have to work on protein and calories. He was able to eat soft poached eggs thru Wednesday, August 1st. Now, he can not tolerate any solid foods. (or, semi solid...I have cooked, strained and pureed just about everything....to no avail).
On Friday, the doctor indicated that I could stop pushing calories until we got his hydration level under control. However, everyone on his team is concerned about his steady weight decline which is currently at 25 pounds.
This past week, the most he has been able to tolerate is 1-2 cans of liquid supplements. We are going to have to try to get that up to 5-6 for his body to get what it needs to heal and to stop the weight loss. I now understand why many sites require a head & neck patient to get a feeding tube prior to treatment. Our site is among the few that won't put one in until medically necessary. Now that he's made it through treatment, I hope he can get through the next few weeks without a feeding tube as he feels very strongly about not wanting one.
Margaret
Dan still feels like he's been hit by a train, although I think the hydration has made a huge difference. I slept better last night just knowing that he is going to be getting extra hydration all week.
Next, we'll have to work on protein and calories. He was able to eat soft poached eggs thru Wednesday, August 1st. Now, he can not tolerate any solid foods. (or, semi solid...I have cooked, strained and pureed just about everything....to no avail).
On Friday, the doctor indicated that I could stop pushing calories until we got his hydration level under control. However, everyone on his team is concerned about his steady weight decline which is currently at 25 pounds.
This past week, the most he has been able to tolerate is 1-2 cans of liquid supplements. We are going to have to try to get that up to 5-6 for his body to get what it needs to heal and to stop the weight loss. I now understand why many sites require a head & neck patient to get a feeding tube prior to treatment. Our site is among the few that won't put one in until medically necessary. Now that he's made it through treatment, I hope he can get through the next few weeks without a feeding tube as he feels very strongly about not wanting one.
Margaret
Friday, August 10, 2007
Friday - August 10th-Help is on the way!
I took Dan into Froedtert today as it appeared that he was getting dehydrated. I don't know how to determine this from a clinical perspective, but it seemed pretty inevitable based on his declining input and steady loss of weight this week. And even though he was warned that this week and next would be the worst, he has been feeling unusually lousy.
At the hospital, they confirmed my concerns and made sure he got some IV hydration. They also set us up with a Visiting Nurse for the next 7 days so Dan can continue to get hydration on a daily basis at home. The Visiting Nurse will start tomorrow.
If I have any additional concerns, I have the option of taking Dan into Froedtert for any one of the hydration treatments in lieu of the visiting nurse. However, for now, I am relieved to have the extra home support.
Dan's neck is beginning to heal nicely and hopefully that is sign of more healing to come.
Today, they said the inside of his mouth, tongue and throat are still a little gnarly, although we are hoping to see signs of improvement towards the end of next week.
Margaret
At the hospital, they confirmed my concerns and made sure he got some IV hydration. They also set us up with a Visiting Nurse for the next 7 days so Dan can continue to get hydration on a daily basis at home. The Visiting Nurse will start tomorrow.
If I have any additional concerns, I have the option of taking Dan into Froedtert for any one of the hydration treatments in lieu of the visiting nurse. However, for now, I am relieved to have the extra home support.
Dan's neck is beginning to heal nicely and hopefully that is sign of more healing to come.
Today, they said the inside of his mouth, tongue and throat are still a little gnarly, although we are hoping to see signs of improvement towards the end of next week.
Margaret
Wednesday, August 8, 2007
Wednesday, August 8th, 2007
Icky day for Dan. He is really struggling through this week and is loosing weight daily. This last treatment of chemo has been hard on him. I will update again later in the week when things are starting to move in the right direction.
Margaret
Margaret
Tuesday, August 7, 2007
August 7th - Tuesday - Recovery Day 1
It was a rough day today. We are all exhausted from Dan's treatment journey. Dan is having a difficult time currently. And, it is hard on me to see him so down.
We have been warned numerous times that the first two weeks post treatment were going to be the roughest yet, and that is proving to be correct. While it was a relief to not have to go to the hospital today, it was not nice to watch Dan manage with the massive amount of discomfort he is dealing with.
Even though the radiation was completed on Friday, it will continue to work in his body and provide additional side effects for the next 10 days. And, the chemo will run it's course within about a week. So even without additional treatments, the discomfort continues to grow.
I am working from my home office now, which is nice. I have lots to catch up on and it felt like a gift to not have to spend a big part of the day at the hospital. And, the kids, they slept until noon. Yesterday's hospital adventure wore them out.
Once up, the kids were both very helpful in doing things around the house and for Dan. Sam got out to the stable. And, in the evening, Sam is back to practicing soccer and Alex's team starts practicing tomorrow night. Soon almost every night will be a soccer night. I am hoping Dan will be far enough in his recovery to watch some of the fall tournaments.
However, for right now, we're just counting down the next two weeks...bracing for the worst and praying for the best.
Margaret
We have been warned numerous times that the first two weeks post treatment were going to be the roughest yet, and that is proving to be correct. While it was a relief to not have to go to the hospital today, it was not nice to watch Dan manage with the massive amount of discomfort he is dealing with.
Even though the radiation was completed on Friday, it will continue to work in his body and provide additional side effects for the next 10 days. And, the chemo will run it's course within about a week. So even without additional treatments, the discomfort continues to grow.
I am working from my home office now, which is nice. I have lots to catch up on and it felt like a gift to not have to spend a big part of the day at the hospital. And, the kids, they slept until noon. Yesterday's hospital adventure wore them out.
Once up, the kids were both very helpful in doing things around the house and for Dan. Sam got out to the stable. And, in the evening, Sam is back to practicing soccer and Alex's team starts practicing tomorrow night. Soon almost every night will be a soccer night. I am hoping Dan will be far enough in his recovery to watch some of the fall tournaments.
However, for right now, we're just counting down the next two weeks...bracing for the worst and praying for the best.
Margaret
Monday, August 6, 2007
Monday - Treatment Day 34 - Dan's DONE!!!!!
It was another long treatment day...and, Dan's last one!!! The kids joined us for the final Chemo Monday. Now it's time to let the healing happen!!!
It's was a long day. We're all tired and happy that this part of the journey is over. And, we're praying for a quick recovery.
Margaret
It's was a long day. We're all tired and happy that this part of the journey is over. And, we're praying for a quick recovery.Margaret
Friday, August 3, 2007
Friday - Treatment Day 33
Dan had his 33rd treatment today. It may have been his last. The radiation doctor wants to stop all treatments (both RT and chemo). The chemo doctor is leaning towards doing one more treatment.
I have spoken to both doctors. The chemo doctor was very good about discussing the options. The radiation doctor was not. I believe the radiation doctor is smart, I also believe he is not used to...or, is easily offended...by questions.
From the beginning through yesterday, 35 treatments for a total of 70 Gys was the scheduled radiation dose. Initially, when I questioned why they had to have such an aggressive treatment schedule for such a small cancer, I was told that it had more to do with the undetectable microscopic cancer cells that were moving through Dan's lymph system and creating nodal involvement.
I did some additional research pre-treatment and found that this is a typical radiation dosage for this type of oropharynx cancer that is staged at T1N2b (that translates into a tumor that is less than 2 cm and has 2 or more nodes involved). Now, at 33 treatments and 66 Gys his doctor has suddenly determined they are going to do more harm than good by completing the treatments.
We will be at the hospital on Monday for required lab work, a chemo consult and potentially a chemo treatment. Nothing is final right now except for the fact that the radiation doc doesn't want to proceed any further, nor does he want to discuss his decision in any detail.
I'm fine with stopping if someone can explain this to me in a way I can understand. I just want to know that after all of the pain and suffering Dan has endured, every single cancer cell has been kicked in the ass.
Dan just wants to stop, period.
Monday will be a complicated day.
Margaret
I have spoken to both doctors. The chemo doctor was very good about discussing the options. The radiation doctor was not. I believe the radiation doctor is smart, I also believe he is not used to...or, is easily offended...by questions.
From the beginning through yesterday, 35 treatments for a total of 70 Gys was the scheduled radiation dose. Initially, when I questioned why they had to have such an aggressive treatment schedule for such a small cancer, I was told that it had more to do with the undetectable microscopic cancer cells that were moving through Dan's lymph system and creating nodal involvement.
I did some additional research pre-treatment and found that this is a typical radiation dosage for this type of oropharynx cancer that is staged at T1N2b (that translates into a tumor that is less than 2 cm and has 2 or more nodes involved). Now, at 33 treatments and 66 Gys his doctor has suddenly determined they are going to do more harm than good by completing the treatments.
We will be at the hospital on Monday for required lab work, a chemo consult and potentially a chemo treatment. Nothing is final right now except for the fact that the radiation doc doesn't want to proceed any further, nor does he want to discuss his decision in any detail.
I'm fine with stopping if someone can explain this to me in a way I can understand. I just want to know that after all of the pain and suffering Dan has endured, every single cancer cell has been kicked in the ass.
Dan just wants to stop, period.
Monday will be a complicated day.
Margaret
Thursday, August 2, 2007
Thursday - Treatment Day 32
It looks like all the prayers and good wishes have been well received. Dan put his fighting hat back on and went to today's treatment. He is back on track to finishing the final three.
Today's visit extended several hours longer than we anticipated. We met with his NP from radiation and she was very concerned about the wounds that have been showing up aggressively on the outside of Dan's neck. After his radiation session, two of the nurses worked on his wounds and showed me how to take care of them over the weekend.
For now, he is sporting a variety of wound care wear that is kept in place by a giant collar type bandage. While it looks uncomfortable, I actually think it has done much to improve some of his discomfort.
Today, Brian, one of the tech's that administers Dan's treatments told Dan that he was taking these treatments well and, in fact, he placed him at the top 10% of patients he has treated for oral cancer. These are really brutal treatments. It takes a lot of courage to go to the hospital every day knowing that your body is getting beaten down with each treatment.
While Dan has been going through some ups and downs, Alex is at a soccer camp
nearly an hour away. Yesterday was parent's night. I didn't feel comfortable being away from Dan for the night, so my parent's stepped in and came down from Door County to support Alex. 
They had dinner with Alex and then he showed them his accommodations. He's staying in air-conditioned comfort with 7 other boys...not quite the roughing it experience of boy scout camp. ;-)
While the kids warmed up, my parents listened to representatives from the Milwaukee Wave team talk about the camp and how it was run.
Finally, they watched the kids scrimmage for an hour and a half. Overall, my parents were impressed with the camp and how well Alex played. I was happy that Alex wasn't parent-less on parent's night. He had a "grand" pair of parents there! :-)
After the parent's night event, my parents came to stay the night.
My dad set me up with some medical expense software to help track all the bills and insurance paperwork. It will save a lot of time.
I think my mom did all the kitchen chores I asked Sam to do. Sam was tired...sleeping until noon is hard work for a teenager. ;-) And, dealing with a mom who is a little on edge when things aren't going right for her dad is even harder work.
Last night, after Sammy and I sat down to a nice spaghetti dinner that Teri, from my book club, brought over, Sammy started her first soccer practice with her new team.
She's a little sore, apparently one hour of their two hour practice was devoted to running, and, she hasn't done a lot of running since the soccer season ended in June. I'm sure she'll get back into the swing of things quickly. :-)
My parents are now back in Door County, Dan is resting comfortably, Alex is enjoying his last night at camp, and Sam is enjoying her last "brother-free" night by having two girls over for the night. We are looking forward to Alex's return tomorrow. It will be nice to have some time where both kids are home.
Alex will be very happy that his first chore home won't be to mow the lawn, since our neighbor, Bryan, very kindly did it for him a little while ago.
There are so many times that I reflect on all the people who have included Dan in their prayers...and the people who have sent cards and good wishes....and made meals and carpooled the kids places...and helped me at work...and done other nice and wonderful gestures, and I am so grateful. This journey would be much harder if we didn't have such amazing family and friends.
Margaret
Today's visit extended several hours longer than we anticipated. We met with his NP from radiation and she was very concerned about the wounds that have been showing up aggressively on the outside of Dan's neck. After his radiation session, two of the nurses worked on his wounds and showed me how to take care of them over the weekend.
For now, he is sporting a variety of wound care wear that is kept in place by a giant collar type bandage. While it looks uncomfortable, I actually think it has done much to improve some of his discomfort.
Today, Brian, one of the tech's that administers Dan's treatments told Dan that he was taking these treatments well and, in fact, he placed him at the top 10% of patients he has treated for oral cancer. These are really brutal treatments. It takes a lot of courage to go to the hospital every day knowing that your body is getting beaten down with each treatment.
While Dan has been going through some ups and downs, Alex is at a soccer camp
nearly an hour away. Yesterday was parent's night. I didn't feel comfortable being away from Dan for the night, so my parent's stepped in and came down from Door County to support Alex. 
They had dinner with Alex and then he showed them his accommodations. He's staying in air-conditioned comfort with 7 other boys...not quite the roughing it experience of boy scout camp. ;-)
While the kids warmed up, my parents listened to representatives from the Milwaukee Wave team talk about the camp and how it was run.
Finally, they watched the kids scrimmage for an hour and a half. Overall, my parents were impressed with the camp and how well Alex played. I was happy that Alex wasn't parent-less on parent's night. He had a "grand" pair of parents there! :-)
After the parent's night event, my parents came to stay the night.
My dad set me up with some medical expense software to help track all the bills and insurance paperwork. It will save a lot of time.
I think my mom did all the kitchen chores I asked Sam to do. Sam was tired...sleeping until noon is hard work for a teenager. ;-) And, dealing with a mom who is a little on edge when things aren't going right for her dad is even harder work.
Last night, after Sammy and I sat down to a nice spaghetti dinner that Teri, from my book club, brought over, Sammy started her first soccer practice with her new team.
She's a little sore, apparently one hour of their two hour practice was devoted to running, and, she hasn't done a lot of running since the soccer season ended in June. I'm sure she'll get back into the swing of things quickly. :-)
My parents are now back in Door County, Dan is resting comfortably, Alex is enjoying his last night at camp, and Sam is enjoying her last "brother-free" night by having two girls over for the night. We are looking forward to Alex's return tomorrow. It will be nice to have some time where both kids are home.
Alex will be very happy that his first chore home won't be to mow the lawn, since our neighbor, Bryan, very kindly did it for him a little while ago.
There are so many times that I reflect on all the people who have included Dan in their prayers...and the people who have sent cards and good wishes....and made meals and carpooled the kids places...and helped me at work...and done other nice and wonderful gestures, and I am so grateful. This journey would be much harder if we didn't have such amazing family and friends.
Margaret
Wednesday, August 1, 2007
Wednesday - Treatment Day 31
31 treatments down and 4 to go. For most of us, that seems like it should be a cake walk compared to what he has already endured. But, for Dan, the remaining few treatments feel like an eternity.
This morning, prior to treatment, Dan was ready to throw in the towel. I tried to call his medical team to see if he could have a little break, but our treatment time was early and I couldn't reach anyone. That turned out to be a blessing, because we had to get into the car, and we had to go to the treatment.
I tried to figure out what was at the source of his change in attitude and/or discomfort, it is the cumulative affect of everything.
I told him that I have been amazed throughout this whole process at his strength and his determination to get through this. He said he doesn't have any more strength or determination left.
So, for those of your praying for Dan, please pray that he will find the strength and determination to complete the remaining four treatments. It is heart wrenching to see him so down. :-(
Thanks,
Margaret
This morning, prior to treatment, Dan was ready to throw in the towel. I tried to call his medical team to see if he could have a little break, but our treatment time was early and I couldn't reach anyone. That turned out to be a blessing, because we had to get into the car, and we had to go to the treatment.
I tried to figure out what was at the source of his change in attitude and/or discomfort, it is the cumulative affect of everything.
I told him that I have been amazed throughout this whole process at his strength and his determination to get through this. He said he doesn't have any more strength or determination left.
So, for those of your praying for Dan, please pray that he will find the strength and determination to complete the remaining four treatments. It is heart wrenching to see him so down. :-(
Thanks,
Margaret
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