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 - 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 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

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

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 - 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

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

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.

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 - 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 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

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

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

___________________________________________

July 20^th, 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 23^rd 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.

In talking with the NP, it absolutely floored me that the first 2 weeks after the radiation and chemo end are the worst. And while their first goal is to reach the end of the treatment, the second will be the countdown of the 14 days post treatment.

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. :-)

Since I work at Froedtert, I have had the opportunity to have a cup of coffee here and there with Margaret, and occasionally I have a chance to see Dan. Today, I actually had a day off, yet Froedtert still seemed like the best spot to give Margaret a meal we had prepared. Now, as an employee, I have the opportunity to pay for parking, and my almost 7 years gives me about no seniority on parking lots, so I park about a million miles away from the rad/onc center. I just wasn’t doing that walk today, so I parked in the regular patient lot. Margaret was very understanding as I shuffled my car around, because the first 30 minutes of parking is free. One car shuffle gives you an hour of free parking! By moving my car around I saved myself a buck. Woo hoo!

Monday will bring another Froedtert Marathon day, a day that will involve chemo, radiation, lab tests, hopefully a visit with the palliative care team. Carol (Dan’s mom) will be coming down from Green Bay for a few days. So, Carol will be at the hospital with Dan too.

Margaret and Dan are looking forward to Saturday, as they have been the best days of the week for them.

Cheryl

Thursday - Treatment Day 22

We're hitting the home stretch. With 22 out of the 35 treatments down, Dan is nearly two-thirds of his way through the treatments. It's hard to believe this whole process is only seven weeks. It feels like we have been in the midst of this for much longer.

After a rough night of pain, we re-evaluated his medication schedule with his NP this morning and upped everything. It seems to be doing the trick as for the first time since Sunday, he is feeling pretty darn good...all things considered.

Dan's thrush is finally starting to ease up and he is getting some of his voice back. He had a good morning and was able to catch up on e-mails and do some work calls today. His voice is really weak, yet he was able to handle short telephone conversations.

Around the house, I still get the primary say in everything...something about yee who speaks the loudest and longest wins. :-)

He wasn't crazy about the conversation I had with his NP this a.m. Dan disagrees that he is falling behind on calories and fluids. He was getting frustrated with me, and yet he couldn't write on a piece of paper fast enough to keep up with me...he just kept shaking his head.

I got all the assurance I needed that they would give Dan IV hydration if he continued to struggle with fluids and calories. And, Dan got all the motivation he needed to prove that I was wrong. He ate eggs, soup and drank several supplements today along with lots of fluid. So, maybe he is getting the last word in...but, in a good way. ;-)

Sammy slept for a solid 14 hours after I got her home from camp. She woke up for a tiny while and then went back to sleep. If whatever she has is similar to what Alex had, I am expecting her to wake up feeling perfectly fine tomorrow.

Alex had a fun day playing with his friends.

Although, Dan had a good day. Fatigue set in early and both he and Sammy were out like a light early tonight.

I keep thinking that Saturday is right around the corner, and I think Saturdays have consistently been Dan's best day of the week through this whole process. :-)

Margaret

Wednesday - NO Treatment Day :-(

The day started out as well as could be expected. We have come to anticipate that the early morning hours are an impossibly difficult time. There is no amount of pain medication that can compensate for all that is going on inside of Dan's mouth and throat. With the lack of salivary function, his immediate waking need is for ice water. Although his ability to sip and swallow is at such a slow pace it takes a long time for him to develop a sense of normalcy...if you can call how he feels daily, now, normal.

I have slowly learned that being in a constant state of hovering does not help with this morning routine. When you see someone looking so uncomfortable, it is hard not to try to want to fix the situation. Although, it's not a situation that is very fixable.

Today, Dan was slotted for a 2:45 treatment time. Once Dan was in better shape for the day, I set him up with fresh ice water and Fuze and a liquid supplement and managed to get some time into the office. As Dan has lost his voice, we were able to stay in touch via text messages. And, when Alex returned home from summer school he was a wonderful help in responding to my calls to check in and report on how his dad was doing along with helping him freshen up his ice water and protein drinks.

Even though the morning had been a tough one on Dan physically (he goes through hours of sweating out toxins...to the point that he changes clothes up to 6 times a day because they are drenched) he was looking well rested and ready to go when I came to pick him up for his treatment.

After an hour driving in heavy traffic, we got some disappointing news. Minutes before we arrived, the electricity had gone out on the treatment machine. And, while the power was restored quickly, the functionality of the treatment consoles that communicate to the treatment machines was not able to be restored quite so fast.

After waiting over an hour, we were sent home. With no treatment to check off on the calendar AND an EXTRA treatment day to tack on to the end. :-(

That hasn't happened to us before. I have a white board calendar with all of the treatment times posted in our bedroom. It all counts down to August 6th as the last treatment. And, now, due to a momentary loss in power...the count down is extended to August 7th.

Dan took in the news with a calm resignation. I was upset beyond words, yet there was no one to blame or to be upset with. The situation was what it was. I didn't want to leave, I just wanted to keep waiting. But, that wasn't an option. They were done treating for the day.

One day doesn't seem like a big deal unless you are watching someone go through something like this. With each day bringing a mountain of new discomforts and symptoms, one day feels like an eternity. I wanted it to end on August 6th. Even now, I am having trouble recalibrating to August 7th.

My sister had been beeping a watchful eye on the electrical situation as they had been having power outages at various parts of the facility all day. She knew what time we were coming and she was going to call and warn us if there was a problem in the radiation area. She checked up until a few moments before we arrived...and, then, it went down. I guess God decided to intervene and give Dan a tiny and unexpected treatment break today. It was nice of Cheryl to check on the situation throughout the day as well as spend time with us while we were waiting and wondering what was going to happen.

On a good note, Dan's chemo rash which had invaded his scalp, face, stomach and back with force is started to subside. It disappeared off of his scalp. And his face, although still slightly ruddy has far less of the acne type rash on it.

The chemo rash is still out in force on his torso, although it does not appear to cause him the pain and issues that it initially did. It could flair up again, or he could be through the worst of it. These types of things are difficult to predict as each patient responds differently. But, for now, Dan is thankful for some relief on that front.

On another good note, the thrush which has been so painful to Dan that it has almost been paralyzing to his tongue and cheeks is finally starting to respond to the medication. Talking is still a challenge and is quite painful. We are hoping that will get a little easier over time. We are not certain if that is all a part of the radiation side effects or if the thrush has aggravated his ability to talk. With the thrush finally on the mend, we will find out soon.

It's hard to believe that it wasn't all that long ago Dan was eating eggs and noodles...in fact that was just on Saturday. Yet, on Sunday when the thrush took hold we have yet to have a day where we has come close to hitting his calorie or fluid goals.

Tonight, he was open to trying some pureed soup, it didn't taste good (nothing does) but he got a small bowl down. And, later he had some egg custard. He didn't like that either, but he knows it was one of my many valiant efforts to try to make him something that he could swallow. He pretended it tasted good, and ate a tiny dish.

He doesn't like me to be in the room anymore when he is eating as it is such a great effort and I am sure his discomfort registers in my eyes. So, when he is trying to get down a liquid supplement or some food I try to give him some space.

Today as he was trying to take in some calories, I stood outside for awhile and talked/cried to my neighbors...who have been so kind to us.

Brenda made a lovely dinner for Alex and I, and she patiently listened to me rant and rave about today's wasted 3 hour trip to the hospital and the addition of another day to Dan's schedule...plus I could not stop babbling about how painful it was to watch Dan go through this. It helped to have someone to talk to.

And, Lynn, whose husband successfully completed similar treatments in May, stopped by to talk and brought over a new liquid supplement for Dan to try. These past few days have been hard, the liquid Carnation VHCs that were supposed to help keep Dan's caloric content up are too thick for him to swallow while he is dealing with the thrush. The drink she brought over is thinner than the VHC and has more calories than the Boost we have been using.

I told Lynn that watching their lives return to normal has been the one thing that has allowed me to stay focused on the fact that this is just a short, concentrated awful time of life.

She told me that her husband wondered often why he had to go through what he did with similar treatments, and now he thinks he was meant to endure what he did so that he could demonstrate to us that there is a light at the end of the tunnel. Of course, that made me cry.

I get a lot of strength from listening to Lynn and I feel so much compassion for their family. They didn't have someone three doors down to give them a sense of a light at the end of the tunnel. Without them, I would doubt our (my) ability to make it through the next few weeks. I also think that for my kids, knowing that her husband went through similar treatments and is now is out and about, working part time and is looking healthy helps reinforce to Sammy and Alex that this is indeed a temporary phase of life.

I felt cried out for the night, until I walked in the house to check on Dan and found out that Sam had been trying to reach me. I always keep my cell phone in my pocket, and I was so off-kilter after our disappointing trip to Froedtert I distractedly put it on the counter.

Sammy was still at soccer camp and she was sick but didn't want to come home and miss tomorrow's activities. She sounded awful, her counselor said that Sammy had the chills and was trying to stay warm under her covers even though it was miserably hot in the dorms. I tried to work with Sam over the phone, encouraging her to take on fluids and ibuprofin, but, eventually, I realized she wasn't going to make it there through the night and it would be better to drive to Marquette and pick her up at 9:00 at night than at 2:00 in the morning.

After seeing how miserable she looked when I came to get her, I was happy when I was able to get her settled and rested at home.

Apparently, my kids did not read the memo on staying healthy for the summer. ;-) So, another child, quarantined to a section of the house again.

On a good note, whatever bug Alex was fighting was short lived. I'm hoping Sam's will be too.

Alex did such a great job balancing playtime with his friends and helping me help Dan, I won't write the story about what he did with wash machine and the water today. ;-)

My camera bit the dust today. I imagine Dan and the kids are ok with that...but, I am not. I like taking pictures of my family daily. I will have to put that onto the to-do list...to find the perfect camera to replace, what I have always thought, was the perfect camera. :-)

Margaret

Tuesday - Another Note

Alex did indeed put his magical self-healing powers to work and made it to his baseball game. He was really happy to go. Unfortunately, the score wasn't what he was hoping it would be, although he had fun. And, I enjoyed watching him play as well as the chance to see some baseball parent friends.

Dan, since he can't currently talk, stayed in bed and in touch via text messaging and it worked out well. You've got to love technology. :-)

While Alex was playing, Sammy called with a dorm crisis. They were separating Sammy and her roommate because their door lock broke. But, the girls didn't want to be put in the only available private rooms...they wanted to stay together.

Sammy wanted me to give the people at the camp "a piece of my mind" so that she could stay with her friend. They girls were willing to share a single room and pull in an extra mattress. I told her if she wanted me to give them a piece of my mind, I would.

It turned out that she and her friend were able to advocate for themselves and they resolved the situation to their satisfaction. And, I got to keep all the pieces of my mind...which come to think of it, I don't know if I have any pieces of mind to spare. :-)

When I took Alex to baseball, I had to run back to get a jacket. When I went back out to the car, there was a little gift basket on my roof. In it were some nice surprises and two cards from our neighbor who was finishing up oral cancer treatments the week Dan was diagnosed. We read the cards, and, of course, I cried. Dan got a motivating message about getting through it from the man who had been through it. And, I got a motivating caregiver message about getting through it from the wife who has been through what I am experiencing.

They know we are heading into the home stretch, and while that sounds like a good thing...it is also a very scary time.

I am sorry they suffered so much and that I didn't know them well enough at the time to know the extent of their suffering...or, to think to put a special basket on top of their car at the perfect time. :-)

Margaret

Tuesday - Treatment Day 21

This is Alex in his new digs. He has taken over the television room to ride out his mystery fever.

After Dan and I returned from a long chemo day yesterday, Alex came home around 4:15 to report that he was "cold". At first, I thought that meant he needed a sweatshirt, but eventually I realized that he had the chills...and, a quick check with the thermometer revealed that he had a fever of 103 degrees.

So, NOT being the calm, rational person that I would like to be during this timeframe, I panicked and called our family doctor. While Dan's white blood cells still remain strong, any additional stress on his body would add exponentially to his already severe discomfort .

As most parent's know, when you take your kid to the doctor for a high fever AND there are no symptoms (such as sinus pressure, sore throat, rash) there's no way to diagnosis what's going on if the fever is less than an hour old. I know this...but, like I mentioned calm and rational went out the window awhile ago. ;-)

Even though there was nothing that could be done for Alex, other than over the counter fever reducers, it was nice to see our family doctor as he was interested in how Dan and I were coping. Of course, once he asked me how Dan was doing I started to cry...which seems to be my standard mode of operating lately.

After consulting with Alex's doctor and Dan's Chemo Nurse Practitioner, it was decided that Alex could ride out his fever in the house...vs. pitching a tent in the back yard. ;-)

For safety sake, Alex was moved to the first floor and Dan is keeping his distance by staying on the second floor. And, my job is to be the obsessive-compulsive hand washer who runs between the two of them to make sure they each have what they need without allowing any germs to spread.

While Alex looks down and out in the picture above and has basically slept for much of the day...he is confident that he will make a full recovery by 8:00 p.m., because he has a baseball game tonight.

Alex doesn't get sick very often, and when he does...his comfort food of choice is Culver's french fries...of which I went out and got for him two times last night. That and lots of fluids got him through his night of fevers, chills and sweats. And, even though he is tired and achy today, he seems to be doing a lot better...he even managed to expand his french fry diet to include a healthy and tasty lunch that a neighbor made for him.

Dan had a rough go of it for the past couple of days although he seems to be riding out post-chemo Tuesday better than some of the other weeks. It's hard to tell if he has less chemo symptoms or the severe and painful thrush that coats his tongue, cheeks and esophagus is masking some of the drain his body feels from the side effects of the chemo.

The best news to report today is how well Dan is doing emotionally. This past Sunday took a hard toll on Dan. And, every day of treatment is just a little tougher to endure. The thrush has made it virtually impossible for him to talk or eat solids. And, yet a heart to heart talk from his nurse practitioner yesterday has really buoyed Dan's spirits and he is doing quite a bit better than I am emotionally at this point.

The NP reassured Dan that even though it feels like he might be dying, they aren't in the process of killing him and in fact she went so far as to say they aren't treating him...they are curing him. She reminded him that they would have been completely honest with him if they were only managing the cancer vs. killing it.

I guess why this is all so intense and hard, it is because they don't want the cancer to come back. She also explained that going into week 5 of treatment he was faring better than most patients in that he was maintaining his weight (after the first 10 pound loss), staying hydrated and still managing to get in some soft foods. She told him how much she admired his drive and determination to eat any foods even though at this stage of the game there is nothing pleasurable about the experience.

She explained to me that for what he has to do to psyche himself up everyday to eat is worse than what I would have to do if someone put a plate of worms in front of me. It's a painful, unpleasant and unsatisfying experience.

She also addressed his constant fevers and chills. And, at this point in the game, they are attributing them to how his body is breaking up and releasing the cancer toxins. There's a medical term for this , but I didn't write it down. So, the very draining fevers, chills and sweats will probably continue, but they are not considered as alarming to his medical team as they were previously.

She acknowledged how rough this treatment regime is. She mentioned that some people opt out of chemo in the last stretch and she gave him that option. To be honest, I don't know if it was an option or a way of testing his mental toughness to endure the remaining treatments, but I was relieved when Dan said he wanted to continue on with two remaining chemo weeks.

She also told him about other patients who have been cured. She said she didn't know why some people had to suffer through this awful path, but afterwards people find their lives to be richer and more rewarding and, in some odd way, they are grateful for the experience.

I wish I could have taped the conversation that Dan's nurse practitioner had with him, because she had such a huge impact on Dan's emotional state of mind and he is now in a really strong, unyielding position to do what he has to do to get these treatments done and over.

Also during the consult, it was determined that the fentynal patch that was doing such a great job with managing his pain was too disruptive to his sleep. So, now they switched him to long acting pain pill that he takes twice a day while he continues to take short acting pain pills as the need arises.

It's hard to tell if the pain management transition was hard because it was a transition. Or, if the transition was hard because his pain, as of late, has been a moving target. But, it wasn't an entirely smooth transition. Although, on a good note, he slept much better last night and once they figure out which dose works best for Dan he will be significantly more comfortable again.

Today, Dan had his radiation treatment and his radiation consult. His radiation positioning took longer than typical and while they work on him, his head is bolted to a table with a custom mask that was fitted to his face prior to treatments. He has very little ability to create his own saliva (due to the treatments) and the mask doesn't allow for him to communicate while they are positioning or treating him.

When he came out of the treatment room, about an hour later, he looked like a dead man walking. He was white as a sheet, sweating and he looked disoriented and had lost all ability to speak. He was under a terrible amount of duress but couldn't communicate to me or to the nurse what he wanted to say...which was that he simply needed some time and some water in an effort to regroup.

Being the calm and rational person I have been of late, I cried. I even got his nurse practitioner to well up with tears today. It's just so hard to see someone in so much discomfort so often and not be able to do anything for them. And, it's hard knowing that there are still more weeks of treatment ahead for Dan. And, it's even hard watching how strong Dan is in this whole process...even though each day is a little more challenging than the one that proceeds it.

I bet Dan wishes he had a more stable support system. His mom is going to accompany Dan to the hospital next Monday, maybe she will do better than I have been as of late. :-)

Sammy called last night and reported that she was doing well at soccer camp but didn't have much time to chat because they had just ordered pizza at the dorm. She also informed me that she is now a vegetarian as she saw a truck full of bloody cow hides drive by the fields today and she has no future plans to eat beef. I told her that was fine, she can eat noodles and sip on liquid supplements with her dad. ;-)

Other than the bloody hide incident, soccer camp sounds like it is great fun.

Margaret

Monday - Treatment Day 20

It was a long rough day. Dan had chemo and his 20th radiation treatment. Alex got a 103 degree fever. I've got them quarantined into two seperate parts of the house. I will write a better update tomorrow. I'm too tired to see straight.

July 15 - A pesky Sunday

Dan was feeling so well yesterday, it was frustrating to see him hit a wall again today.

He spent the wee hours of Sunday morning fighting off fevers and chills and by mid-morning he was exhausted. The thrush is an additional annoyance above and beyond the ulcers and blisters in his mouth and throat, and this new symptom added monumental pain to the heavy load he is already carrying. Unfortunately, it took a big toll on his emotional outlook as well.

On a good note, the hospital was nice enough to call in the thrush prescription without having to see Dan. Another Sunday Froedtert visit would have put Dan completely over the edge today.

Dan was hoping to see his brother's family this afternoon, however, he was so uncomfortable he asked to postpone in hopes that they might make another attempt to visit on a Saturday. We have a lot of bad days, but Saturdays seem to be consistently better than the rest.

After stopping at a few stores for necessary and completely indulgent things to take on her week away, I dropped Sammy off at soccer camp. She is staying at a college dorm and I was surprised to find that in addition to her friend and roommate there are several other girls attending the camp that she knows well. I'm sure she is going to have an incredible time.

I'd have one more picture of her here, but she kept trying to shoo me out of the room. She was giving her friend that "my mom is hovering too much" look as I tried to help her get her bed made and clothes unpacked. When that didn't work, she just came out and asked me to stop hovering and told me I should leave. What can I say, I like to hover. ;-)

I didn't get to hover with Alex because he carpooled to Mountain, WI to get to camp. Although, at the drop off point he kept telling me that I was saying good-bye too much. Ahhh, what's a mom to do...

After catching up on some sleep, Alex is settling into being back home. So, it's back to daily showers and regular toothbrushings.

I don't think the scouts do any type of work towards a hygiene merit badge while they are at camp. Before he left, I bought Alex a whole set of travel sized supplies...toothpaste, shampoo, shower gel, a fold up toothbrush. When he was unpacking, those items looked surprisingly untouched. Although, for Alex, roughing it was all part of the fun and adventure. :-)

Alex was a great help to Dan while I was getting Sammy off to camp. When Dan is on high doses of pain medication, he needs a lot of little reminders to drink fluids, sip protein supplements and take medications. Alex did a good job staying in touch with me via phone and keeping everything on task for Dan.

And, with a little help from his friends, Alex also got the flat tire on his bike fixed which was important since he uses his bike to get to summer school while we are at the hospital.

Alex did such a great job while I was dropping Sam off at camp that I ended up staying a little longer and had a nice chat with the parents' of Sam's roommate (outside of the dorms...after I had been sufficiently shooed away by my daughter). It felt nice to stand in the sun and enjoy a pleasant conversation.

I felt bad when I returned as Dan was feeling far worse than when I had left. And, I feel bad, that at this moment in time, Dan isn't able to partake in life's simple pleasures...like being outside and talking to friends.

At this point, we are doing everything we can to make Dan feel as comfortable as possible, however, emotionally he is finding it a little harder to get through each day. Even though I am with him nearly all the time, I don't think that I fully grasp the extent of his pain, fatigue and anguish.

What I do know is that life will never be the same for either one of us. There has been something very eye opening in this whole process. I don't know exactly how it will impact our lives in the future, but I know that it already has and will continue to do so for many decades to come.

After a week of boy scout camp, Alex is motivated to take on new projects. His current plan is to carve a wooden bat from a stick he found that is the same length as his aluminum bat.

When Alex sets his mind on a project, I am amazed at the focus and detail he puts towards completing it. I have no doubt that Alex's bat will be a functional work of art when it is done.

Alex is also really proud of some new things he bought at the boy scout camp. Of special joy is a really thick pocket knife. There are so many tools on his new knife, I think it could replace virtually an entire tool box.

I'm sure if I think for a few minutes I could come up with a number of opportunities for Alex to use his new tools around the house. Seems to me that there are a few loose door knobs as well as some hinges that need new screws. Hey, I think I am beginning to like that knife almost as much as he does. :-)

And, unlike his other knives, this one came with a carving stone. So, he can whittle away and keep the blades nice and sharp. I can tell he REALLY likes this knife and sharpening stones by the way in which he is taking such good care of them....which in my world means he has yet to leave them at the neighbors house or leave them someplace where I will stumble or drive over them. ;-)

Today, our neighbors gave Alex a wonderful fruit salad that included raspberries and mint from their garden. I don't know what Alex enjoyed more, working with his new knife, playing with his friends, or eating that fruit salad.

I've never had a green thumb, although, I think Alex might. Every summer, he takes a great deal of interest in our neighbor's abundant garden of fruits and vegetables.

Sammy called around 9:30 tonight which was after her first soccer practice and dorm meal. She was happy about the whole experience today and excited about the upcoming week.

All in all, it was a pretty good day for both the kids.

Tomorrow, I am bracing for chemo-Monday...which is always followed by post-traumatic-chemo Tuesday. I think I'm getting the routine down.

I'm happy to report that we are starting week 5 tomorrow...and with that I see a tiny glimmer of a light at the end of this very dark and sometimes scary tunnel.

Margaret

Saturday - July 14th - We're halfway through the weekend!

Compared to all the other days in the week, this one was a stand-out day. Dan, after eating a hearty breakfast, slept most of the day, which was a good thing. The sleep is a sign that the pain medications are kicking in and he is tolerating the side effects better.

He was able to get his calories, fluids and medications in on his waking moments. His ability to take in solid food is limited, so it was exciting today when he was able to eat (vs. drink) two of his meals.

I've been told by his team that whenever he can eat, I should forget everything I have ever learned about healthy meals and try to go for fat and calories. So, I'm learning to put aside my Cooking Light books and have become good friends with Betty Crocker again.

Canned foods (soups and sauces) are off the list as they recently became unpalatable to Dan due to the salt content, so I made an attempt at a very rich and calorie ladened Alfredo sauce...lots of butter, heavy cream, cheese. To be honest, I do not think he liked it, but he pretended to because he knew I made it. I know things don't taste good and are difficult to swallow, so I am always happy when he manages to get something down.

Apparently, if you stop swallowing for an extended period of time it is difficult to restore that functionality again. This is something we were warned about, and something they worry more about in patients who don't have an annoying caregiver at home who is constantly trying to push fluids and food. ;-)
Right now, eating takes up an enormous amount of energy. Sitting up takes up energy. And, it's hard to tell how tired he is because the chemo rash gives him a ruddy, red complexion that looks more like a long day in the sun, rather than the face of someone who wishes they could sleep 24/7.

Today, I got some welcome help. My parents came in to town to drop off some artwork the kids did when they were in Door County. They also brought Dan a pile of DVDs to watch.

While they were here, my parents ran my Saturday errands. They picked up more prescriptions for Dan along with the beverages we needed from Sendik's. It was nice that I was able to get a little extra down time while Sammy was at a neighbor's tennis game and Alex was returning home from camp. I had planned to use the time to start working on Dan's medical bills, but the pile is big and I just couldn't get myself to start today...hopefully, I'll make that Sunday's project.

My main goal was to NOT get in the car today. I'm really tired of running around. However, after spending a fun day watching her friend, Drew, take 2nd place in a tennis tournament today, Sammy was itching to return to the barn to ride her horse.

After a little cajoling on her part, I agreed to take her if she finished packing for tomorrow's soccer camp. She did her packing, I got in the car...and, it turned out to be a great time. She's hoping to get one more ride in tomorrow morning before she leaves in the afternoon.

We were excited to have Alex return today. Our neighbor brought him home and Alex was SO tired from scouting camp that he could barely talk. All he could mumble out was that he had a great time and couldn't wait until next summer to return.

Even though he was tired, he did manage to get his not-so-nice smelling clothes into the wash and his not-so-clean body into the bathtub. When he got a little bit of a second wind, he kept Dan company while I was at the stable with Sammy.

There were so many things he enjoyed about the camp, I don't even know if I could begin to list them. While I was gone, he started to tell Dan some of the highlights. Rifle shooting was big on the list, he saw a black bear in the woods, and he and his cabin-mates built a two story structure out of wood and twine. He is looking forward to getting more active in scouts in the future. We are looking forward to hearing more of his adventurous stories in the days to come.

This evening, Dan started to develop thrush in his mouth. At the last few appointments, the doctors have been looking for it and expecting it to come. I'm wondering why I didn't just ask for a prescription to have on hand...although I don't know exactly what thrush is, the doctors were pretty clear about what it looks like and that it will require a prescription to resolve.

I'd call a doctor now, except Walgreen's is closed and I can't do anything until tomorrow anyways. Unfortunately, it won't be a completely doctor/prescription free weekend. Although, it has definitely been a much better weekend than last. And, a much better day than the past few.

Other than the new prescription we will likely have to get tomorrow, I feel great relief in finally having all of the supplies we need for Dan in abundance and in the house. Now, I can focus on the kids nutritional needs again as they will probably want more to eat this summer than runny scrambled eggs, creamy noodles or liquid supplements. :-)

Margaret

Saturday - July 14th - A bright note in the morning!!!

I woke up this morning in awe.

Dan was resting comfortably, his pain was under control and he was HUNGRY! He ate 3 scrambled eggs and a pancake this morning along with some beverages (Fuze and water).

His spirits are up, his very inflamed and painful rash has settled down and he's in a really great mood. I'm so happy!

I asked him what he thought made him feel so much better today. He said, "prayer". So, for all of you who have been praying for Dan, thank you. The prayers and well wishes are greatly appreciated. :-)

Margaret