Taken three days after celebrating our 20th anniversary while our family was on a Caribbean cruise...something we said we would do once Dan was better! :-)
Monday, April 27, 2009
April 18, 2009
Taken three days after celebrating our 20th anniversary while our family was on a Caribbean cruise...something we said we would do once Dan was better! :-)
Monday, October 8, 2007
Happy Birthday to Dan!
It was a great day today, Dan enjoyed his 49th birthday. :-)
We had much to celebrate.
Margaret
Saturday, September 15, 2007
Saturday - September 15th
Dan is doing so well, it is really amazing the speed in which he is recovering. Although, day to day, watching his progress is as hard as watching water boil or bread toast. After every forward movement, there is always a back slide. We are getting used to it now, but it makes the healing process seem all the more frustrating.
I know I have been remiss in posting. Part of it is because I am busy with work and the kids' school and soccer schedules...but, the main reason is that there is no real progress to report daily that wouldn't have to be rescinded the following day.
For instance, Monday, Dan woke up very ill and sick to his stomach. By mid morning, when his Mom came to visit, he was doing quite well and they had a wonderful day. Then, Tuesday and Wednesday Dan declined steadily and he lost a few more pounds. Thursday rolled around and he was back on the upswing which continued through Friday.
We both keep reminding each other that the net result is he is improving greatly week to week. We will be happier when the progress is steadier and the backsliding stops.
Margaret
I know I have been remiss in posting. Part of it is because I am busy with work and the kids' school and soccer schedules...but, the main reason is that there is no real progress to report daily that wouldn't have to be rescinded the following day.
For instance, Monday, Dan woke up very ill and sick to his stomach. By mid morning, when his Mom came to visit, he was doing quite well and they had a wonderful day. Then, Tuesday and Wednesday Dan declined steadily and he lost a few more pounds. Thursday rolled around and he was back on the upswing which continued through Friday.
We both keep reminding each other that the net result is he is improving greatly week to week. We will be happier when the progress is steadier and the backsliding stops.
Margaret
Monday, September 3, 2007
Happy Labor Day
Wow, a week of UPs and DOWNS...I think more ups than downs. :-)
Soccer season is impacting the timeliness of my posts. I have a big weekend update about Alex's tournament in IL, Dan's first road trip in a long time, and Sammy's shopping adventure...all will be posted soon. Plus we had some company, my sisters family stopped in for a visit.
Stay tuned, more words and pictures will magically appear soon. Thanks for your patience.
Soccer season is impacting the timeliness of my posts. I have a big weekend update about Alex's tournament in IL, Dan's first road trip in a long time, and Sammy's shopping adventure...all will be posted soon. Plus we had some company, my sisters family stopped in for a visit.
Stay tuned, more words and pictures will magically appear soon. Thanks for your patience.
Sunday, August 26, 2007
Sunday - August 26th
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
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
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
Tuesday, July 31, 2007
Tuesday - Treatment Day 30
I'm not so sure how happy Dan and the kids are that I replaced my camera, but I am a happy camper. :-)
Today, on Day 30 of treatments, Dan got the pleasure of his friend Jeff''s company to and from Froedtert. I am sure it was a welcome relief to listen to another voice other than mine.
I have learned that I am a white space filler. Which means, if Dan's voice is weak or he can't talk...I just talk, and talk and talk. I'm sure Dan appreciated the opportunity to hear another voice and listen to different topics. Or, maybe Jeff gave Dan's ears a break...I never do that. ;-)
While Jeff took Dan to treatment, I got a few things done around the house before I left for the office. Sam was my second in command at home today, checking in on Dan regularly and reporting what he was (or was not) drinking. We've got a nice good cop/bad cop routine going...although, she never wants to be the the bad cop.
Tuesday's are a little difficult for Dan, the first post-chemo day of the week is almost as bad as chemo day itself. Today he was riddled with fatigue and every time I called Sam she indicated he was very tired or sleeping and not drinking much. I tried to get her to be firm and make him drink more, but she couldn't be hard on her dad...she thought he needed the rest.
By the time I got home, the rest looked like it had done him well and he was sitting up and drinking a protein shake. (Probably because he heard the bad cop pulling into the garage). ;-)
We really want him to get through this without Dan being hospitalized and he, personally, does not want a feeding tube this late into treatment...It's a little frustrating that we lost so much ground last week.
Dan is working on reducing the number of pain pills he is on. And, he is indeed in more pain. A big part of that is that darn thrush. Even though the doctor caught it really early, and I got the Rx filled immediately at the hospital, it is spreading a little and I know from last time that it has a huge pile-on effect to the existing aggravation in his mouth and throat.
We're down to 5 treatment days left....that light at the end of the tunnel continues to shine brighter every day.Sam had a nice evening of horseback riding tonight and I enjoyed watching her.
Alex is still off at camp and I'm sure he is having a great time.
Margaret
Monday, July 30, 2007
Monday - Treatment Day 29
The only really good thing about this treatment day is it is over. A few high/low lights:
-Dan woke up feeling terrible...and, for the first time since treatments started he was very agitated. :-(
I asked the nurse how it was possible for him to have such a good day on Sunday and feel so awful the next day...she says that happens...and, that some people don't get the good days. So, I guess we are lucky.
-I had one heckuva 2nd round migraine return, making Monday a little harder for me. Fortunately, Sammy came with us to the hospital and that was a great help. :-)
-After being off the medication for one day, Dan's thrush is back. :-(
-Dan started the day with a terrible, dark brown, smelly substance coming out of his nose. He thought something was really wrong...turns out it is a normal side effect that we didn't know about.
The radiation is killing tissues and cells inside his mouth, throat and esophagus...and, the dead stuff has to leave the body somehow. That's why the thick mucous is developing as well.
-The chemo doctor did some research while we were there, he can not point to anything in the literature about Dan's treatments that would explain the extreme sweating Dan experiences several times daily. Today, Dan woke up dehydrated as he had sweated out all of his liquids. :-(
-He got extra IV hydration, hopefully that will help. :-)
-One more chemo treatment was added. So, today, was our 2nd to last chemo treatment and not our last as we had anticipated. :-(
-Dan lost 6 pounds this past week and no one is happy about that on his medical team. His total loss is at about 20 lbs. They thought he was doing pretty well until now.
The next three to four weeks are supposed to be the toughest to endure. They are worried about his daily intake and they want him to reduce his pain meds and be in more pain so he will be up more and able to take in more protein supplements. While I understand what they want, and it makes sense (the pain meds were making him very sleepy)...it was really nice to go one week without seeing Dan in extreme pain. :-(
-Dan's sodium count is way down, so they want him to drink Gatorade...the salt in the Gatorade burns Dan's mouth. That will be a challenge. :-(
-We were at the hospital much later than planned, which was exhausting but typical for a chemo Monday. :-(
-We ran into our neighbors at the hospital...the ones who have already endured the treatments and beaten this cancer. It is always encouraging to see them. We also got a nice note in the mail from their 9 year old daughter....in her lovely note she included, "Everything is going to be fine cause we went through the same thing." We all thought that was sweet. :-)
-They ran out of blankets in the chemo area, and in that huge, gigantic complex, they couldn't provide Dan with a blanket (chemo makes him cold). Of course I called my sister who produced a great big wool one within minutes from her own personal stash. :-)
-Sam was a trooper for most of the day, but eventually she got bored, so when my sister left for the evening, she took Sammy to a horse store for new riding pants and half chaps. I've been meaning to do that and just haven't had the time. That was a really nice thing for Cheryl to do. :-)
-Jackie, from my book group, dropped off a wonderful meal. She is recovering from her own health issues and she has been in our prayers, it's with much gratitude that we received such a nice meal. :-)
-My sister made one of Sam's favorite types of chicken salad and dropped it off with us when we were at the hospital, I know Sam will be devouring that for lunch on Tuesday. :-)
-Sam got out to the barn late in the evening and got to see Mick again, it's been awhile since she has ridden as Sam has been out of town a lot lately. :-)-Alex is now at soccer camp, we are hoping he is having a fun time. :-)
That's it for Monday. I pray that Tuesday goes significantly better for Dan.
Margaret
Sunday, July 29, 2007
Sunday - July 29th - What a Terrific Day!!!
What an incredible day today!!! This afternoon, Sammy returned home and she was accompanied by Dan's mom, Carol, his niece, Meggie, and his aunt, Judi. (Dan's aunt lives in Georgia and we do not get to see her very often.)
This is Aunt Judi, Dan and Carol
I keep telling Dan that if someone didn't know better, they'd never know he was enduring all that is being done to him as he is looking great on the outside...even if he doesn't feel so great on the inside.
It was a huge boost to his spirits to see everyone. And, it was a huge boost to mine to see him visiting for several hours.
He's back in bed now trying to force down a liquid protein drink and he's probably down for the night. Although, it was a wonderful thing to see him with his family today!
Maybe, I'll even get him outside one of these days to sit and enjoy the incredible weather we have been experiencing. :-)
Here's Meggie, Dan and Sammy.
Here's Grandma Carol with Meggie and Sammy.
This is Sammy with her Great Aunt Judi.
Here's Sammy who has returned to be my right hand person for the week.
Alex left earlier today for soccer camp. His friend's mom, Sandra, was kind enough to take Alex to the camp. He and his friend, Calvin, are looking forward to a very fun week.
Alex did such a nice job helping me help Dan this past week and I know Sam is ready to step in and do her part. In fact, as I am writing this, she is at the grocery store planning what to make for dinner.
I have taken my share of migraine medications for the day, so she's got double duty tonight as both of her parents are a little on the tired side.
Even with the migraine, I've got to say it was one of the best days we've had here in a long time.
Margaret
This is Aunt Judi, Dan and Carol
I keep telling Dan that if someone didn't know better, they'd never know he was enduring all that is being done to him as he is looking great on the outside...even if he doesn't feel so great on the inside.
It was a huge boost to his spirits to see everyone. And, it was a huge boost to mine to see him visiting for several hours.
He's back in bed now trying to force down a liquid protein drink and he's probably down for the night. Although, it was a wonderful thing to see him with his family today!
Maybe, I'll even get him outside one of these days to sit and enjoy the incredible weather we have been experiencing. :-)
Here's Meggie, Dan and Sammy.
Here's Grandma Carol with Meggie and Sammy.
This is Sammy with her Great Aunt Judi.
Here's Sammy who has returned to be my right hand person for the week.Alex left earlier today for soccer camp. His friend's mom, Sandra, was kind enough to take Alex to the camp. He and his friend, Calvin, are looking forward to a very fun week.
Alex did such a nice job helping me help Dan this past week and I know Sam is ready to step in and do her part. In fact, as I am writing this, she is at the grocery store planning what to make for dinner.
I have taken my share of migraine medications for the day, so she's got double duty tonight as both of her parents are a little on the tired side.
Even with the migraine, I've got to say it was one of the best days we've had here in a long time.
Margaret
Saturday, July 28, 2007
Saturday - July 28th
It's always a relief to get to Saturday. Without the pressure of getting up and going for a treatment, Dan is able to rest and recoup a little from the previous week.
Today, Dan was unusually tired. And, he is struggling with a new side effect from the radiation treatments that is impacting his ability to swallow and eat. I know we are supposed to be upping his calories, but it is impossible...his calorie and fluid intake are declining daily.
After a very restful morning, I spent the bulk of the day looking up ideas on the Internet for things Dan might be able to swallow and then running back and forth to the store for ingredients. Although, sadly, nothing worked.
Everything either burns on his tongue or hurts like shards of glass in his throat or complicates the thick mucous that is making swallowing difficult.
There are times I get frustrated with what these treatments are doing to him. And, it's hard not to think back to a couple of months ago when he was feeling perfectly fine, eating everything in sight and was completely unaware that he was walking around with this darn cancer.
In spite of Dan's woes and my current level of frustration, Alex still had a fun sleepover, that was made even more fun when his friend's mom picked the boys up to go to the Simpson's movie.
When Alex returned, we worked on getting him set for his departure to soccer camp tomorrow. When I took this picture, he was sitting on his luggage ready to drop his head on his pillow. He said that he and his friends stayed up until 3:00 a.m. during his Friday sleepover and he was one tired guy as we were going through the details of a week-long packing list.
We are looking forward to seeing Sam, Dan's mom and his aunt tomorrow. Sam hasn't seen Dan for awhile and she called me to tell me how good Dan looked on yesterday's picture. I thought he looked really good to. I'll be really happy when he is feeling as good as he looks.
Margaret
Today, Dan was unusually tired. And, he is struggling with a new side effect from the radiation treatments that is impacting his ability to swallow and eat. I know we are supposed to be upping his calories, but it is impossible...his calorie and fluid intake are declining daily.
After a very restful morning, I spent the bulk of the day looking up ideas on the Internet for things Dan might be able to swallow and then running back and forth to the store for ingredients. Although, sadly, nothing worked.
Everything either burns on his tongue or hurts like shards of glass in his throat or complicates the thick mucous that is making swallowing difficult.
There are times I get frustrated with what these treatments are doing to him. And, it's hard not to think back to a couple of months ago when he was feeling perfectly fine, eating everything in sight and was completely unaware that he was walking around with this darn cancer.
In spite of Dan's woes and my current level of frustration, Alex still had a fun sleepover, that was made even more fun when his friend's mom picked the boys up to go to the Simpson's movie.
When Alex returned, we worked on getting him set for his departure to soccer camp tomorrow. When I took this picture, he was sitting on his luggage ready to drop his head on his pillow. He said that he and his friends stayed up until 3:00 a.m. during his Friday sleepover and he was one tired guy as we were going through the details of a week-long packing list.We are looking forward to seeing Sam, Dan's mom and his aunt tomorrow. Sam hasn't seen Dan for awhile and she called me to tell me how good Dan looked on yesterday's picture. I thought he looked really good to. I'll be really happy when he is feeling as good as he looks.
Margaret
Friday, July 27, 2007
Friday - End of week 6
What a couple of good looking guys. Today, they ditched me to check out the cute nurses and NPs at Froedtert. ;-)
Actually, one of Dan's best friends, Jeff, took Dan to his early a.m. treatment and he sat with him during his Friday consultation. While the best thing about this is that Dan got to spend time with a friend, it also afforded me an opportunity to spend the entire day at the office.
This is the first time I haven't accompanied Dan to a treatment at Froedtert. It felt odd sending him off. Although, I was very grateful Dan had a chance to spend time with Jeff.
On the way home, Jeff took care of getting another prescription to Walgreen's and then called me with updates that occurred in the consultation.
Dan enjoyed the change of pace of having a new driver with new topics to talk about. It's uncomfortable for Dan to be out and about, and he is so tired after his treatments that he hasn't been up to having people over to visit. Reconnecting with a special friend meant a lot to Dan. Thank you, Jeff!
Once home, Alex got Dan settled with his morning eggs and kept in touch with me throughout the day to make sure Dan was taking in fluids, calories and medicines. Dan's weight is starting to slip, so we have to help encourage him to take in more, even though calorie intake is the farthest thing from Dan's point of interest at the moment.
Alex had a wonderful night at the outdoor Cedarburg Friday music concert with two friends, Calvin and David. When the concert was over, they came here for a sleep-over. (Or as it seems now, possibly a stay-up-over).
Sammy called and told me about the very complicated jigsaw puzzle she is enjoying working on with her grandma and cousin. Even though she is having fun, with soccer camp and her trip to Green Bay so close together, she has been gone a lot and I miss her. I am looking forward to seeing her on Sunday.
Our neighbor, who just recently finished his oral cancer treatments two months ago, got his all clear proclamation from his CT scan recently. This was such exciting news to me. They have been on my thoughts and in my prayers all week. They called to see if Sam could babysit so they could go out for a little celebration.
Since Sam was gone, I asked if I could watch their kids. I know that when we get Dan's all clear, I don't want any obstacles to keep us from celebrating. I haven't seen much of Alex this week, and I miss Sammy, so I did enjoy spending some special time with their kids, Michael and Madeline.
While I was out with the neighbor kids, my very kind neighbor, Julie, brought over a wonderful Mexican feast for Alex and his friends to enjoy after the concert. It was quite the treat for some hungry boys!
After my little friends, Michael and Madeline, left, my aunt showed up from Minnesota. We had a wonderful chance to talk and tomorrow she is going to visit my grandma and uncle.
A busy night, and a fun one too. The only thing that could have made it better was if I could have gotten Dan to sit outside in the nice weather with me while I was with the kids or while I was talking to my aunt. But, he was too tired today, maybe tomorrow.
Margaret
Thursday, July 26, 2007
Thursday - Treatment Day 27
Today's 27th treatment went very smoothly. I like it when we can get in and out without a long wait. While Dan was in treatment, I had a chance to visit with my sister and I also had an opportunity to talk with one of Dan's NPs about post treatment issues and concerns.
As I am happily counting down the treatment days, I am starting to learn what life, post treatment, will be like for Dan. I keep hoping for reassuring words like "piece of cake", "nothing to worry about", or "picnic"...as in life will be one. I am finding out that I will have to be a tiny bit more patient before those words return into our vocabulary. Although, I am confident they will eventually. Just as I am confident that someday we will look back on this summer as a small and contained part of our lives.
Tonight, after Dan was home and settled from the treatments, I had a chance to spend a little time with Alex. It's a hard thing to extricate him from his friends in the neighborhood.
But, he was anxious to get the tire on his bike fixed so that's where we started...then, as long as the bike store was soooo close to my grandma's, I thought it would be nice for us to stop in and say hi for a minute.
Alex was incredibly patient as one of the residents where my grandma lives kept grabbing him by the chin and telling him how handsome he was. ;-)
Then, as long as we were at my grandma's...we were sooooo close to Cost Cutters...and, the haircut I have been wanting him to get all summer, finally happened.
Then, on the way back we got his passport photo taken at Walgreen's and we picked up some soccer socks at Dunham's for his upcoming soccer camp. It was a whirlwind tour of errands. We got all that done in about an hour.
Even though we were busy, it was nice to spend some one on one time with Alex. :-) I miss spending individual time with each of the kids.
Sammy is still in Green Bay and we are looking forward to her return on Sunday. Tonight Sammy went to see the musical, Evita, with her Grammy Carol and Cousin Meggie. Sammy loves musicals, and enjoyed this one quite a bit. I wish I could have seen it too, Sammy said it was performed very nicely.
Margaret
As I am happily counting down the treatment days, I am starting to learn what life, post treatment, will be like for Dan. I keep hoping for reassuring words like "piece of cake", "nothing to worry about", or "picnic"...as in life will be one. I am finding out that I will have to be a tiny bit more patient before those words return into our vocabulary. Although, I am confident they will eventually. Just as I am confident that someday we will look back on this summer as a small and contained part of our lives.
Tonight, after Dan was home and settled from the treatments, I had a chance to spend a little time with Alex. It's a hard thing to extricate him from his friends in the neighborhood.
But, he was anxious to get the tire on his bike fixed so that's where we started...then, as long as the bike store was soooo close to my grandma's, I thought it would be nice for us to stop in and say hi for a minute.Alex was incredibly patient as one of the residents where my grandma lives kept grabbing him by the chin and telling him how handsome he was. ;-)
Then, as long as we were at my grandma's...we were sooooo close to Cost Cutters...and, the haircut I have been wanting him to get all summer, finally happened.
Then, on the way back we got his passport photo taken at Walgreen's and we picked up some soccer socks at Dunham's for his upcoming soccer camp. It was a whirlwind tour of errands. We got all that done in about an hour.
Even though we were busy, it was nice to spend some one on one time with Alex. :-) I miss spending individual time with each of the kids.
Sammy is still in Green Bay and we are looking forward to her return on Sunday. Tonight Sammy went to see the musical, Evita, with her Grammy Carol and Cousin Meggie. Sammy loves musicals, and enjoyed this one quite a bit. I wish I could have seen it too, Sammy said it was performed very nicely.
Margaret
Wednesday, July 25, 2007
Wednesday - Treatment Day 26
With treatment day 26 out of the way, we can finally start counting down in single digits. There are only 9 treatment days left and only one of those will include a chemo day.
I can't believe we are finally getting down in numbers...and, Dan can't believe there are SO MANY treatment days left. Each treatment seems to get a little harder to handle for him, so we both have a little bit different perspective.
I used to spend hours each night on the on-line oral cancer foundation bulletin board looking for ways to get him through treatment in the most comfortable way possible. Now, I am focusing on reading the posts about how to make the recovery period (which can be lengthy) as smooth as possible. In my mind, these treatments are as good as done. I wish Dan felt that way, but he is obviously the one suffering in a much greater way than I am.
Initially the impact of the radiation was on the inside of his mouth, lips, tongue, throat and esophagus. Now, the discomfort is extending externally by creating blisters and sores on his skin around his neck and it is difficult to wear a seat belt on the ride home home. Now, me personally, I would just say forget the seat belt. But, even in an uncomfortable situation, he keeps it on...wincing all the way home. He's a good rule follower...I guess that is what makes him a good patient as well...he does what he needs to do every day at the hospital and at home...regardless of how much pain or discomfort he is in.
I got a great assist from Dan's good friend, Jeff, today. I went to the office for a few hours and lost track of time. I was unusually tired today, and I realized as I was leaving that I didn't allow enough wiggle room to pick Dan up and get him to the hospital in time for his treatment. This was the first time I slipped on the schedule. Kindly, Jeff dropped everything, picked up Dan and met me halfway.
In the meantime, I called to see if Dan's treatment room was running on time. Wouldn't you know it, sometimes were on time and they are running an hour behind...and, sometimes, we're running a little behind in traffic and we wish they were running late...we have yet to achieve the right synchronicity. I doubt that we will...since we ONLY have 9 sessions to go!
The great thing is with Jeff's help, everything worked out perfectly. And, Dan got his 26th treatment out of the way. Once treated, he is not in the best of shape for the remainder of the day. It is very hard to be in one position, with your head bolted via a mask to a table while you are being zapped for 45 minutes. I don't think the treatments themselves are painful, however the cumulative effect and damage of the treatments are quite awful.
And, being in a warm room with no access to hydration when your salivary glands aren't working is draining. Recently, a new symptom cropped up this week that makes the treatments a little more challenging...the lining of his mouth and throat and esophagus is shedding and creating a very thick mucous effect...of which he can do nothing about while on the treatment table. I am so glad that there are only 9 days left!!!
We were treated to such wonderful surprises from some very nice friends today. Our neighbor, Brenda, made us a wonderful, spicy peanut noodle dish and Cindy, from book club, brought over some amazing potatoes, veggies and grilled chicken breasts. While Dan is not able to eat solid foods, and Sam is away at her Grandma's, Alex has no problem eating everything in sight.
Alex is so active (and I think he might be hitting another growth spurt) that he generally eats more than one dinner over the course of the evening. He had a very large serving of spicy noodles prior to going to his friend's baseball game and then he came home and enjoyed Cindy's chicken dinner.
The incredible food people have been sending our way has my kids drawing the conclusions that I need to create more variety and step up my cooking a notch. They love it when someone introduces something new into the house. I think we will have many new ideas from which to create some family menu projects together when Dan is feeling better and able to enjoy food with us.
Summer school ended late last week, and Alex did what he loves best, played most of the day. And, then he went to his friends Nico's baseball game.
Sam, is having a wonderful time with her grammy and they saw the movie Hairspray...which she thoroughly enjoyed.
And, did I mention we are down to single digits...9 treatment days left!!!! :-)
Margaret
I can't believe we are finally getting down in numbers...and, Dan can't believe there are SO MANY treatment days left. Each treatment seems to get a little harder to handle for him, so we both have a little bit different perspective.
I used to spend hours each night on the on-line oral cancer foundation bulletin board looking for ways to get him through treatment in the most comfortable way possible. Now, I am focusing on reading the posts about how to make the recovery period (which can be lengthy) as smooth as possible. In my mind, these treatments are as good as done. I wish Dan felt that way, but he is obviously the one suffering in a much greater way than I am.
Initially the impact of the radiation was on the inside of his mouth, lips, tongue, throat and esophagus. Now, the discomfort is extending externally by creating blisters and sores on his skin around his neck and it is difficult to wear a seat belt on the ride home home. Now, me personally, I would just say forget the seat belt. But, even in an uncomfortable situation, he keeps it on...wincing all the way home. He's a good rule follower...I guess that is what makes him a good patient as well...he does what he needs to do every day at the hospital and at home...regardless of how much pain or discomfort he is in.
I got a great assist from Dan's good friend, Jeff, today. I went to the office for a few hours and lost track of time. I was unusually tired today, and I realized as I was leaving that I didn't allow enough wiggle room to pick Dan up and get him to the hospital in time for his treatment. This was the first time I slipped on the schedule. Kindly, Jeff dropped everything, picked up Dan and met me halfway.
In the meantime, I called to see if Dan's treatment room was running on time. Wouldn't you know it, sometimes were on time and they are running an hour behind...and, sometimes, we're running a little behind in traffic and we wish they were running late...we have yet to achieve the right synchronicity. I doubt that we will...since we ONLY have 9 sessions to go!
The great thing is with Jeff's help, everything worked out perfectly. And, Dan got his 26th treatment out of the way. Once treated, he is not in the best of shape for the remainder of the day. It is very hard to be in one position, with your head bolted via a mask to a table while you are being zapped for 45 minutes. I don't think the treatments themselves are painful, however the cumulative effect and damage of the treatments are quite awful.
And, being in a warm room with no access to hydration when your salivary glands aren't working is draining. Recently, a new symptom cropped up this week that makes the treatments a little more challenging...the lining of his mouth and throat and esophagus is shedding and creating a very thick mucous effect...of which he can do nothing about while on the treatment table. I am so glad that there are only 9 days left!!!
We were treated to such wonderful surprises from some very nice friends today. Our neighbor, Brenda, made us a wonderful, spicy peanut noodle dish and Cindy, from book club, brought over some amazing potatoes, veggies and grilled chicken breasts. While Dan is not able to eat solid foods, and Sam is away at her Grandma's, Alex has no problem eating everything in sight.
Alex is so active (and I think he might be hitting another growth spurt) that he generally eats more than one dinner over the course of the evening. He had a very large serving of spicy noodles prior to going to his friend's baseball game and then he came home and enjoyed Cindy's chicken dinner.
The incredible food people have been sending our way has my kids drawing the conclusions that I need to create more variety and step up my cooking a notch. They love it when someone introduces something new into the house. I think we will have many new ideas from which to create some family menu projects together when Dan is feeling better and able to enjoy food with us.
Summer school ended late last week, and Alex did what he loves best, played most of the day. And, then he went to his friends Nico's baseball game.
Sam, is having a wonderful time with her grammy and they saw the movie Hairspray...which she thoroughly enjoyed.
And, did I mention we are down to single digits...9 treatment days left!!!! :-)
Margaret
Tuesday, July 24, 2007
Tuesday - Treatment Day 25
Today's treatment went off without a hitch. There are only 10 treatments left.
We were sorry to see Dan's mom return to Green Bay today. Not only was it nice to have the extra help (all of which was very much appreciated). Her timing was wonderful. Dan was feeling better than he has in the past two weeks and it was nice that he was able to come downstairs on occasion and sit with his mom, the kids and I. His voice continues to diminish, thus, he is becoming a really great listener.
Sammy left with her Grammy for a mini vacation in Green Bay today.
She's been sleepy lately, I'm guessing Grammy will let her sleep in more than I do. I like 'em up at o-eight hundred hours. Sammy would rather sleep until noon-hundred hours...and, then she'd like to take a nap. ;-) I know Sam's Grammy has too much planned for her for that kind of sleeping.
When they return, we understand that Dan's aunt (from Georgia) will be with them.
Alex had a late night baseball game. While it appeared they were going to win by a landslide in the beginning...the tables turned and his team lost by one run.
Although, for Alex, a game lost is better than a game not played. Alex slid into home three times, had two RBIs and one more minor injury...and, that is what he considers a good time!
We were sorry to see Dan's mom return to Green Bay today. Not only was it nice to have the extra help (all of which was very much appreciated). Her timing was wonderful. Dan was feeling better than he has in the past two weeks and it was nice that he was able to come downstairs on occasion and sit with his mom, the kids and I. His voice continues to diminish, thus, he is becoming a really great listener.
Hmmmm, I wonder if he will be such a good listener post treatment.... ;-)
Overall, he is tired of the fatigue, the fevers, the pain, waking up dripping with sweat...and he is frustrated with the lack of solid food options, which is now limited to one type of yogurt and soft eggs. However, we are both starting to see the light at the end of the tunnel. A little easier for me than it is for him...since he's still going through the treatments daily.
Now that his pain is managed and his rash is settling down, even his NP commented how good Dan looked yesterday in comparison to just two weeks ago. I think there was a point in Dan's treatment where we all wondered, Dan included, if he would endure the treatments through to the end. But, now that we can count down the days on two hands and that darn thrush is gone, it all feels more manageable.
Sammy left with her Grammy for a mini vacation in Green Bay today.She's been sleepy lately, I'm guessing Grammy will let her sleep in more than I do. I like 'em up at o-eight hundred hours. Sammy would rather sleep until noon-hundred hours...and, then she'd like to take a nap. ;-) I know Sam's Grammy has too much planned for her for that kind of sleeping.
When they return, we understand that Dan's aunt (from Georgia) will be with them.
It seems like seeing his mom lifted Dan's spirits, so I'm hopeful that he will also get a boost out of seeing his aunt, whom he hasn't seen in a few years.
Alex had a late night baseball game. While it appeared they were going to win by a landslide in the beginning...the tables turned and his team lost by one run.Although, for Alex, a game lost is better than a game not played. Alex slid into home three times, had two RBIs and one more minor injury...and, that is what he considers a good time!
Margaret
Monday, July 23, 2007
Monday - Treatment Day 24
Today Dan's mom joined us for chemo Monday.
24 Radiation Treatments down, 11 to go. And, 6 chemo treatments complete, only 1 to go!
Every chemo day starts with lab work, then a consultation with the doctor and/or NP, the chemo IV drip followed by an observation period. The day is finished off with a radiation treatment. In between each of those steps, there is generally a waiting period.
Today, Dan's lab, chemo and RT schedule showed that he'd be at the hospital for 9 hours...which is way too long for his current level of fatigue. Up until now, we have been really patient about the waiting periods. WE respect all of the medical people on Dan's team and we have come to realize that when we are waiting someone is getting all of their questions answered, in an un-rushed fashion. And, when we are getting all of our questions answered, someone else is waiting patiently.
However, where Dan is at fatigue-wise with the radiation therapy and pain medication, much waiting didn't seem like a good idea today.
I thought the day was going to go off without a hitch when I called someone on his team early in the a.m. and got his appointments consolidated down to a shorter time. This enabled Dan's mom to go and visit with friends who live near Froedtert, I got Sam out to the horse barn, Alex went to play and Dan slept.
When we did go in for his lab work, we thought we were going to have the shortest chemo day ever. And, it might have gone that way if the lab who has to draw his blood before his chemo is mixed...could have drawn his blood. It took them one hour, three people and many pokes for them to come to the conclusions that Dan was dehydrated and his veins were collapsing. Bottom line, even with a pediatric needle, they couldn't draw blood.
Unsure of what to do, we went to the chemo area and found someone on Dan's team to tell them we couldn't get the blood work done. I also called my sister to see if she happened to have access to a man's shirt...since the lab work was stressful to Dan and with his current state of fevers and sweating...he was soaking wet. Leave it to my sister to have a man's large shirt she had won tucked away in a drawer in her desk. She immediately came and gave it to us and listened to our frustrating lab story in horror. Apparently, Froedtert has a team that specializes in hard to draw blood...she thought they should have been paged. Dan was littered with band-aids where they had tried to get access to his veins. His blood pressure was also higher than I have ever seen it.
When we met with his team, they were a little frustrated. We were more than an hour behind and there was no blood to be analyzed, thus they couldn't get him into the chemo process in the time frame allotted. They explained that Dan was not dehydrated, although his veins were responding to the chemo and radiation and sometimes at this point in the process they get less cooperative. They were a little frustrated at what Dan experienced in the lab.
Our NP said that she'd find someone on her team to get Dan done with one poke, and she was right. Although, in the process, the clock was ticking away. We were loosing ground to get Dan's chemo treatment in along with his radiation treatment. There were several discussion regarding moving chemo to Tuesday or skipping today's radiation.
However, in the end, his team came through and got both the chemo and the radiation in. (An important thing both for his treatment and for his moral). It did mean that the radiation department had to stay open until 7:00 p.m. (There normal closing time is closer to 4:30 or 5:30). I commend all the people who stayed late and so Dan could get his treatment.
We already lost one treatment day, we don't want to loose anymore.
During his consult, they were happy that Dan had found a way to manage the pain by experimenting with his pain medications over the weekend. They said the ulcers and blisters in his mouth are typical for this stage of the process. On a good note, over the past two weeks, Dan's pain has been escalating exponentially (oops, that's not the good note). Here' the good note, we finally found the combination of pain relief that works for him. I was concerned how much higher we should continue to up the dose and I was given assurance that Dan is at the peak point pain-wise that he will endure through treatment. (that's the good note) So, while it's pretty bad pain, it's being managed well...and, we can stop worrying about a new surge.
We spent a little time talking about food. Dan has the desire to eat and swallow, although, he can't handle more than runny eggs and liquid supplements. His NP suggested I whip up some things of interest in the blender to see if that offered any success. It didn't :-( Dan misses eating, chewing, swallowing, tasting. Although, two to four weeks post treatment, he should be able to start to experiment and, hopefully enjoy, food again.
Once again, we were warned that the radiation continues to work 2 weeks post-treatment. So, those won't be picnic weeks...but, once we get there on the calendar, we know that we won't have to drive to Froedtert daily...and, we are hoping that then his body can truly start to heal.
After Dan was shuttled away to the radiation room, I left him in the capable hands of his mom so I could run one errand and stop by and see my grandma, who I haven't seen since Dan was diagnosed. My visit with my grandma was run short as Sammy called to tell me that dad looked very stressed when they arrived home and she was feeling a little uncertain as to what to do. I came home to find Dan running another 103 degree fever and feeling miserable. Our tiny short chemo day...had turned into a 9 hour day with travel. And, it was quite hard on Dan.
Shortly after I arrived home, Dan was able to take some medication, get some sleep and work through his fever. Eventually, when we were all ready to call it a night, Dan managed to come downstairs and sit with the family for a little while.
When he went to bed for the night, he was still traumatized by all the needle pokes. He understands the discomfort of the radiation treatments and the chemo treatments, but he felt the hour long "pin cushion" experience was cruel and unusual in light of all he has been dealing with. I felt bad that I didn't seek out some extra help for him. Now we both know, if it takes more than one poke, we can find someone on his team to help us.
On a great note, I think I would have been far less calm about the situation if Carol (Dan's mom) hadn't been along. She was so calm and level, her presence helped me stay calm and level too.
Well, except for my evening rant with the kids...drats...I wish I had a little more energy to focus on the kids where my body wasn't filled with a day's worth of tension.
On a wonderful note, after getting home so late, it was nice to be treated to a wonderful homemade meal of mac and cheese, applesauce and bread from Susan in my book group. Julie, my neighbor, coordinated some extra meals for us...and, each one I think I can get by without, and each one I wonder what I would have done without it. The meals from neighbors and friends have been wonderful blessings.
Someone wrote me today...most of of all remember that not even a sparrow falls to the ground apart from God's will (Matthew 10:29), so there is a reason for all of this. (Thanks, Kitty)
I'm sure there is a reason. Sometimes it is hard to see in the midst of the situation. But, when Dan is recovered, relaxed and healthy again...I am sure the reason will reveal itself.
Margaret
Sunday, July 22, 2007
Sunday - July 23rd - A wonderful Sunday
Today we were blessed with many things. Dan's pain has been consistently under control for two days now. What a difference the right pain medication can make. The kids were terrifically helpful. And, the day went incredibly smoothly. Dan's spirits were high, although his voice was weak. He was delighted to have his mom visit and even managed to spend some time downstairs chatting with her.
Alex helped clean out the garage, mowed the lawn and managed to find some time to play as well.
Sam did her chores around the house and enjoyed a high school baseball game and some time with her friends.
When Dan retired for the night, Sammy, her Grammy and I went to the stable to watch Sammy ride. In a fluke accident, while riding her horse, Mick, her pants brushed up against the side of the barn and shredded...was this an accident...or a clever rouse to get a new pair of riding pants that she has been asking for all summer??? ;-)
All in all, a really great day filled with many blessings. I think it has been our best Sunday to date. For me, I see the glimmer of hope that the end of treatment process is near and Dan and I are both mentally prepared to make it to the home streatch. Having his mom here has been icing on the cake for all of us. Tomorrow, she is joining us at the hospital, we are looking forward to having her meet a few special people on Dan's amazing team.
Happy Sunday to all! For us, this one was full of much gratitude.
Margaret
Alex helped clean out the garage, mowed the lawn and managed to find some time to play as well.
Sam did her chores around the house and enjoyed a high school baseball game and some time with her friends.
When Dan retired for the night, Sammy, her Grammy and I went to the stable to watch Sammy ride. In a fluke accident, while riding her horse, Mick, her pants brushed up against the side of the barn and shredded...was this an accident...or a clever rouse to get a new pair of riding pants that she has been asking for all summer??? ;-)
All in all, a really great day filled with many blessings. I think it has been our best Sunday to date. For me, I see the glimmer of hope that the end of treatment process is near and Dan and I are both mentally prepared to make it to the home streatch. Having his mom here has been icing on the cake for all of us. Tomorrow, she is joining us at the hospital, we are looking forward to having her meet a few special people on Dan's amazing team.
Happy Sunday to all! For us, this one was full of much gratitude.
Margaret
Saturday, July 21, 2007
Saturday - July 21st
True to form, Saturday continues to be Dan's best day of the week.
After daily modifications to his pain medication, Dan is finally on a dosage that provides pretty steady control for about 7 hours at a time.
Pain was a big issue this week, on Monday he started the new pain medication he is taking at a dosage of two tablets every 24 hours. Now, he is up to 16 tablets every 24 hours. (You know, I was wondering why, if he only needed 2 a day, the prescription was originally written for over 100 tablets so far into the treatment...I guess that question answered itself over the course of this past week.)
I wish I could say Saturday was my best day of the week too, but I think the drain of each preceding week doesn't always make Saturdays a stellar one for me and the kids.
Sadly, the kids got the short end of the mom stick today when our expectations of each other collided. My view was small expectations and big disappointments in helping around the house. I think their view was big expectations, and way too much mom-impatience.
Seems to me this was a hurdle last summer too, when Dan was healthy and he and I were both working and someone (i won't name names) was sleeping until noon daily...and, someone else (who I will also let remain nameless) was doing more things destructive than constructive to the house. ;-)
Fortunately, we all ended the day on a good note. We talked about all that is going on, how we all felt about dad's cancer and what a rough week this was pain-wise for their dad...and, as a result, how that took a big emotional toll on me. And, with both of the kids getting sick this week, it added a little more to the mom-o-meter than this mom could handle. They talked about the stress that they are feeling and their concerns about Dan's health...all in all it was a productive discussion.
Although we have been trying to make this summer as normal as possible for the kids, we know it has been hard on them too.
Even though the impact didn't last through the day, I did manage to get out for a long walk with a neighbor in the morning and that felt very invigorating. I am hoping I can figure out a way to squeeze in some much needed exercise in the weeks to come.
On a really great note, in addition to the pain management, Dan's chemo rash continues to subside and for someone who is feeling pretty darn miserable at times, he really looks pretty darn good.
We are looking forward to Dan's mom's visit tomorrow. And, Sam, is looking forward to spending a few days at her grammy's house next week.
Margaret
After daily modifications to his pain medication, Dan is finally on a dosage that provides pretty steady control for about 7 hours at a time.
Pain was a big issue this week, on Monday he started the new pain medication he is taking at a dosage of two tablets every 24 hours. Now, he is up to 16 tablets every 24 hours. (You know, I was wondering why, if he only needed 2 a day, the prescription was originally written for over 100 tablets so far into the treatment...I guess that question answered itself over the course of this past week.)
I wish I could say Saturday was my best day of the week too, but I think the drain of each preceding week doesn't always make Saturdays a stellar one for me and the kids.
Sadly, the kids got the short end of the mom stick today when our expectations of each other collided. My view was small expectations and big disappointments in helping around the house. I think their view was big expectations, and way too much mom-impatience.
Seems to me this was a hurdle last summer too, when Dan was healthy and he and I were both working and someone (i won't name names) was sleeping until noon daily...and, someone else (who I will also let remain nameless) was doing more things destructive than constructive to the house. ;-)
Fortunately, we all ended the day on a good note. We talked about all that is going on, how we all felt about dad's cancer and what a rough week this was pain-wise for their dad...and, as a result, how that took a big emotional toll on me. And, with both of the kids getting sick this week, it added a little more to the mom-o-meter than this mom could handle. They talked about the stress that they are feeling and their concerns about Dan's health...all in all it was a productive discussion.
Although we have been trying to make this summer as normal as possible for the kids, we know it has been hard on them too.
Even though the impact didn't last through the day, I did manage to get out for a long walk with a neighbor in the morning and that felt very invigorating. I am hoping I can figure out a way to squeeze in some much needed exercise in the weeks to come.
On a really great note, in addition to the pain management, Dan's chemo rash continues to subside and for someone who is feeling pretty darn miserable at times, he really looks pretty darn good.
We are looking forward to Dan's mom's visit tomorrow. And, Sam, is looking forward to spending a few days at her grammy's house next week.
Margaret
Friday, July 20, 2007
Friday - End of Week 5 (And, a guest author) :-)
My sister, Cheryl, who I see regularly at Froedtert came in on her day off to sit with me during Dan's Radiation Appointment. At the end of a long painful week for Dan that included very little sleep, I was feeling a little emotional and scared about the upcoming weekend...her presence was very calming to me.
Today's entry is written by Cheryl.
Margaret
___________________________________________
Today's entry is written by Cheryl.
Margaret
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July 20th, ending day 23 of the treatment.
Margaret has asked me to be a guest writer for the Friday treatment, I am Margaret’s sister Cheryl, the one that works at Froedtert in the purchasing department. (I only added that because I am a very non-clinical person.) Luckily for the patients of Froedtert, including Dan, I cannot offer any clinical advice.
I stopped by Froedtert today, prior to Dan’s 23rd treatment. That is 23 down, only 12 more to go. Margaret wanted to stop by Sam’s club while Dan was in radiation, and I talked her out of it. My public service announcement for the day was the traffic was horrid, and I didn’t recommend she go. Not if she wanted to be back in 45 minutes. I’m not sure what was going on, down by the zoo interchange – traffic was backed up everywhere, and it didn’t look any better on Hwy 100.
With everything going on - Dan looks great – the improvement on the rash on his face was huge, comparing my Wednesday brief visit, with my Friday visit. Dan is very hoarse, and talking is difficult. In my infinite wisdom of trying to only ask him yes/no questions, didn’t realize exactly how hard that is.
After Dan went in for his treatment, one of the nurse practitioners talked to Margaret for a few minutes. Margaret continues to be concerned about the pain meds, and if the ones being used are strong enough. The NP assured her that he is able to take more meds, and should up his dose at night, so that he will sleep through the night. A good night’s sleep would be great for both of them.
This particular NP was very concerned about pain management in general, and had many great suggestions, including having a person from Palliative Care talk to them. The NP was quick to point out that the Palliative Care team is an excellent resource for pain management, even though their primary role is assisting patients and families with end-of-life concerns. This is clearly not an end-of-life situation, however, this team is able to offer more insight on the pain management. Hopefully the NP will get an appointment set up for Monday. It continues to amaze me that while the technological advances in medicine are just huge, and while the science is very specific, that medicine also appears to be somewhat of an art as well.
Note to Dan: keep drinking your fluids buddy! I know you are getting that from Margaret, the kids, your care team. Just add me to the “nagging” list. Have any of them offered you a better beverage after the treatment is complete and you are feeling better? Here is my offer: Keep your fluids up and I’ll buy you a nice cold Samuel Adams sometime in September. Of course, since I would hate for you to be drinking alone, I would be forced to have one with you. Just call it “taking one for the team.” Dirty job, but somebody’s got to do it. :-)
Margaret and Dan are looking forward to Saturday, as they have been the best days of the week for them.
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