Dan's Progress

April 18, 2009

2009-04-27T17:40:00.003-05:00

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! :-)

Happy Birthday to Dan!

2007-10-08T20:13:00.000-05:00

It was a great day today, Dan enjoyed his 49th birthday. :-)

We had much to celebrate.

Margaret

Saturday - September 15th

2007-09-15T11:39:00.000-05:00

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and soccer schedules...but, the main reason is that there is no real progress to report daily that wouldn't have to be rescinded the following day.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

Happy Labor Day

2007-09-03T21:58:00.000-05:00

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.

Sunday - August 26th

2007-08-26T20:28:00.000-05:00

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

Wednesday - August 22nd - Recovery Day 16

2007-08-22T21:22:00.000-05:00

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

Sunday - August 19th

2007-08-19T23:50:00.000-05:00

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

Thursday - August 16th

2007-08-16T23:52:00.000-05:00

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

Wednesday - August 15

2007-08-15T21:49:00.000-05:00

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

Tuesday - August 14

2007-08-14T22:40:00.000-05:00

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 - A bump in the road

2007-08-13T23:59:00.000-05:00

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

Sunday - August 12th - A really GREAT day!

2007-08-12T19:34:00.000-05:00

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 11th

2007-08-11T23:14:00.000-05:00

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

Friday - August 10th-Help is on the way!

2007-08-10T20:15:00.001-05:00

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

Wednesday, August 8th, 2007

2007-08-08T23:01:00.000-05:00

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

August 7th - Tuesday - Recovery Day 1

2007-08-07T23:51:00.000-05:00

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

Monday - Treatment Day 34 - Dan's DONE!!!!!

2007-08-06T22:11:00.000-05:00

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

Friday - Treatment Day 33

2007-08-03T20:00:00.001-05:00

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

Thursday - Treatment Day 32

2007-08-02T19:09:00.000-05:00

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

Wednesday - Treatment Day 31

2007-08-01T11:15:00.000-05:00

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

Tuesday - Treatment Day 30

2007-07-31T18:08:00.000-05:00

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

2007-07-30T23:18:00.000-05:00

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!!!

2007-07-29T18:43:00.001-05:00

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

2007-07-28T23:38:00.000-05:00

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

2007-07-27T23:59:00.000-05:00

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

2007-07-26T23:28:00.000-05:00

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

2007-07-25T23:40:00.000-05:00

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

2007-07-24T23:30:00.000-05:00

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

2007-07-23T23:35:00.001-05:00

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

2007-07-22T23:19:00.000-05:00

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

2007-07-21T20:37:00.000-05:00

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) :-)

2007-07-20T21:39:00.000-05:00

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

2007-07-19T19:55:00.000-05:00

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 :-(

2007-07-18T23:42:00.000-05:00

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

2007-07-17T23:27:00.001-05:00

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

2007-07-17T18:45:00.000-05:00

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

2007-07-16T21:52:00.000-05:00

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

2007-07-15T23:44:00.000-05:00

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!

2007-07-14T23:48:00.000-05:00

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!!!

2007-07-14T11:46:00.000-05:00

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

Friday - Treatment Day 19 - End of Week 4!!!!

2007-07-13T23:47:00.000-05:00

It's amazing the difference a day can make. While Dan continues to struggle through the treatments, today was significantly better than yesterday for both of us. :-)

This morning, after I dropped Sam off at horse camp, I was able to swing by Target and get the much needed Carnation VHC (Very High Calorie) protein drink that was in lock-down at the pharmacy yesterday when I tried to retrieve it. This beverage will now become instrumental towards getting Dan closer to his daily caloric and protein requirements for the remainder of the treatments.

Then, when I returned home shortly after 9 a.m, I had a message from Sendik's that they had put a special rush on Dan's only beverage of choice...and, they will have two cases by tomorrow. Plus, they said they will keep ordering Peach Mango Fuze for me as long as I need it. Many kudos to the wonderful people there. And, also to the wonderful people who read my blog and tried to find more Peach Mango Fuze for Dan all over the state.

In light of Dan's swallowing issues, pain, throat/tongue/mouth blisters, taste alterations, and other numerous challenges, Dan has been a trooper about trying to take in what he can...but this week has not been one of our more successful ones.

His healthcare team does not care where the calories come from, they just want him to try to get to 2400 daily, along with adequate hydration. The VHCs I picked up have 540 calories per 8 oz can and the Fuzes have about 200 calories per 18 oz bottle. And, both do double duty as caloric intake and fluid. So, this weekend, I will rest a little easier knowing that we might start to get back on track towards his daily goals.

While Dan was in radiation today, I was able to say goodbye to a friend/ex-employer who, until recently, I haven't seen in decades. He was receiving radiation as well and he finished up his final treatment today. I hadn't stayed in touch with him, but I recognized him the moment our paths crossed. He is an incredible man.

We have an odd treatment schedule and so did he. Our times bounce all over the map, but 75% of the appointments we have had have overlapped with my friend's appointments.

Although, the circumstances weren't great for re-acquainting, I did enjoy catching up with him and getting to know his family and a friend who also drove him frequently. Saying good bye today was bittersweet. I am glad his treatments are finished, although I will miss seeing the familiar and comforting faces daily. I pray that his healing path continues.

Then, I had a chance to talk to Dan's other Nurse Practitioner. (Yesterday, I met with his Chemo person and today I met with his RT person.) I talked about how hard this is getting, how much pain Dan is in and how little he is consuming. Like the other people on the team, she assured me that Dan is right on target for a person going through this type of treatment. Again, not much consolation, but I took the news better today.

We discussed the pain in his esophagus that seems to prevent him from eating, and she gave us another prescription for a liquid medication that will help lubricate the area prior to eating or drinking anything. I didn't realize until today that the esophagus is one area that is also getting treated with radiation.

I also confided with her that Dan has been cheating on his weight recently. Early on, he came wearing shorts and a t-shirt...and, when he was weighed, he would empty his pockets, remove his phone and take off his shoes. Now, he comes in wearing long sleeves and jeans and he never empties his pockets or removes his shoes. She laughed and said, "That is such a guy thing". :-)

So, after his treatment, Dan got weighed again, without his shoes and without pocket weights...and, it appears he has dropped another 4 pounds this week. On a good note, the new medications he has been prescribed and the products we have ordered should help. And, they are also going to start giving him more IV fluids during chemo and possibly a couple boosters during the week if his weight continues to dip.

I can't say I understand how everything works. Although, here's what I do understand...low fluid and low caloric intake directly correlates to more suffering and more hospital time. That's why I ratted Dan out. I was actually surprised his loss this week wasn't more than four pounds. Although, anything over two pounds in one week is considered out of range. And, everyone agrees that from here on out the eating and drinking will get more challenging daily. So, it's important to me that his team has an accurate take on his weight so that we can all work together to get him through this.

Dan's NP also wanted him to consider doubling the number of Fentynl patches he is wearing. Dan's not ready for that. While Dan realizes the patch provides a huge, steady relief for the pain, the night terrors and jerky movements that wake him up are a little hard for him to handle.

So, Dan decided to continue to take breakthrough pain relief pills along with the patch until his body adjusts to the side effects. On a scale of 1 - 10, with 10 being over-the-top pain...Dan wakes up every morning at a 7. They would prefer to see him down at a 3 or below. I do admire how pro-active they are in working with Dan's pain. Although, I can understand Dan's reluctance to take on more side effects at this point in time. Especially since we seem to be adding new medications daily.

I have probably mentioned this before, but I'll say it again. The people who are taking care of Dan are amazing at Froedtert. When he is in treatment and I come armed with a list, I am always able to get in to see the people I need to see even though I am not the one who has appointment times. And, they are good about working through the list with me during Dan's 45 minute treatment time so that Dan doesn't have to stay longer than necessary. Their responsiveness, upbeat attitudes and joy for the work that they do go a long way in helping me help Dan.

After we were done in Radiation, it was time to head to the Froedert ENT Hearing Specialist for our "his and her" weekly ear drum steroid injections. While neither of us realized any great benefit from the first treatment, we both stay optimistic that future treatments will help our tinnitus issues and hearing losses. I just learned today that we might have to continue for up to 8 injections. Yikes!

When we signed on for this, we both thought it was a one time deal. On the up-side, the ENT is careful to schedule the appointments to work well with Dan's radiation treatments, helping to minimize the time we are at the hospital. Post radiation, Dan is in a fair amount of pain, very fatigued and he starts getting chills if we don't get out of the hospital quickly.

After the injection, you have to lie very still for a half hour. In a nice quiet room, I found it a good place to lie still and cry, AGAIN. It was cathartic for me, but it was concerning to my ENT...so, now I have an appointment next week with the psychologist in plastic surgery. Yes, I know...plastic surgery...it makes no sense...but, my ENT (who I like a lot) says this guy is great and will be able to help me with the stress of all that is going on in my life.

I don't know if it is the stress or the boat load of steroids I am currently on to help with my hearing loss.

Up until recently, I thought I was handling everything well. But, my recent crying binges and outbursts when things aren't going smoothly seem to indicate that a little help could be in order. I'm fine with trying anything that can be done while Dan is in treatment as long as it doesn't extend his hospital day.

Hey, maybe, I could get a few botox injections while I'm hanging out in the plastic surgery area as I'm quite sure this summer has aged me by a few years. ;-)

After getting some rest in when we returned from our 5 hour day, Dan looked surprisingly well and was able to eat some soft macaroni and cheese and more Peach Mango Fuze. He promised to drink one more protein supplement, but has since dozed off again. It's alright, with all of the night-time side effects he has been experiencing, there will be more opportunities for him to be awake and take in a few more calories tonight.

My goal this weekend is to do whatever it takes to stay away from Froedtert. Going their last Sunday threw us both off kilter for the week.

On the home front, Sam finished up her last day as a jr. camp counselor at the stable. And, since we had a long day scheduled at Froedtert today, she spent time with her friend and also took a riding lesson.

Today, she helped her little campers decorate a horse because it was a themed day. Then, she came home (a little tired from getting up early every day this week) and rested for a bit before going to a neighbor's house to babysit...which was fun for her.

Even though Dan and I were quite exhausted from our Froedtert-fest, she managed to have a nearly normal 13 year old girl day, and that was nice.

Tomorrow Alex comes home from boy scout camp, and then Sam will be getting ready to leave for soccer camp on Sunday. We hope it will be a good weekend for all.

Margaret

Thursday - Treatment Day 18

2007-07-12T23:59:00.000-05:00

It's a mini milestone today. 18 treatments down, 17 to go. Dan is officially over the half way mark.

I wish I could say that it was all coasting from here on out. But, truth is, we are in the middle of treatment hell and likely things will get much worse before they get better. It appears that to kill the cancer and stop the spread into the lymph nodes, they almost have to take out the patient.

I get frustrated with what they are doing to his body for a tumor that was so small. Yet, they keep telling me that the location of the source tumor makes it ripe for moving through the lymph system. And, they have reminded me that it was already in three lymph nodes before they started treatment. This is why they are taking a body that appeared to be fine several weeks ago and knocking it out hard...they want to make sure when the treatments are done that they have wiped out every single microscopic cancer cell...even those too small to detect on a diagnostic scan.

During the week, Dan has been declining rapidly. The mucositus (painful blistering in the inside of his mouth, tongue and throat) makes even the softest of foods feel like daggers when he attempts to swallow. Foods that you might think would be soothing (like ice cream) make his mouth burn. His salivary glands have taken a big hit and he no longer has the necessary saliva to swallow most foods that the average person doesn't think twice about. Even when he is not attempting to eat, the lack of saliva makes for an incredible amount of discomfort.

The amount of pain medication Dan needs to function increases daily. With the narcotics there is some relief, but with more drugs there are also more side effects.

The radiation has made a huge alteration to how foods taste and most foods are not palatable. It has also impacted how long it takes for foods to travel from his mouth to his stomach. In addition, radiation fatigue has set in and is very overwhelming. Dan would sleep more, but one of the pain medications he is on is causing night terrors and/or strong jerky movements that jar him awake. The pain benefits FAR outweigh these symptoms. So, we are hoping that this is a short term side effect and that he will be able to continue with the pain medication.

Today while Dan was in treatment, I went through my list of concerns with someone on his medical team. It was a long list. As awful as everything on the list is, I was told that Dan was right on track with someone mid-way through oral cancer treatments. I think this was meant to be reassuring for me, but it wasn't.

They gave me a list of more instructions to add to his daily regime. And, they gave me another prescription today to help with some of the stomach issues and esophageal discomfort that Dan is dealing with. They told me to keep pushing liquids and calories, even if the calories are all from supplements.

The only unusual aspect of Dan's treatments is his on-going issue with chills and fevers. Initially, Dan would have to have a blood panel run every time he had a fever. As of Sunday, his blood counts remained strong so they have decided to give his veins a rest and wait until Monday to run more labs.

Because fevers and cancer treatments are a bad combination, they will keep Dan on antibiotics throughout the remainder of his treatments as a precautionary measure. And, now he will take over the counter Tylenol and ibuprofen daily in an effort to thwart the fevers before they come. In Dan's current state, any additional discomfort is monumental.

On a typical morning, while I drive Sammy to the stable, Dan works on lubricating his mouth and taking some pain pills to start the day. Mornings are incredibly painful for him. When I return I am able to make the one meal he is able to eat consistently...runny scrambled eggs.

After he has eaten and stocked up with beverages, I have been making feeble attempts to get some office work done from home in the a.m.. Then I take Dan to and from his treatments...which on a non-chemo day takes about three to four hours. When we get home, Dan crawls into bed and I try to get him something to eat and drink. Then, I usually pick or drop one of the kids from one place to another.

Anytime I am out of the house, I try to make quick stops to get Dan more medication, or food or beverages to try, or ANYTHING that will make him more comfortable. Then, Dan generally naps on and off through the latter part of the afternoon and evening, and again I try to get a little work done...both for the office and around the house.

At any moment that Dan is awake, I have food and beverage in hand in hopes that he will consider opting for one or the other. They say at this point, treatment hell will get significantly worse if he doesn't stay hydrated and if he looses more weight.

After seeing how much pain Dan is in and how difficult the rides to and from the hospital are for him...and, trying to manage and track the drugs, the fluids and the calories and any new symptoms that need to be discussed with his medical team...along with attempting to participate in some way to my job and my life...I find that my expectations of my kids are wildly high and their performance (in contrast to my overly-high expectations) dizzyingly low.

The results of all of the emotions are taking a toll on me and I am glad that the kids will have this blog as a resource tool for when they are in counseling in their adult years. Then, they won't have to describe what a short-tempered, explosive mom I was...they can just print this out and tell their therapists' this is what I endured during the summer of 2007. ;-)

Hopefully, in their hearts, they know this is their temporary mom who has been overtaken by alien emotions...and, not their regular mom who marvels at their many great qualities and considers them to be the greatest two kids on earth!!

Today, I broke the routine that we have been establishing over the past couple of weeks. I had the opportunity to go into my office for a late afternoon client visit. Before I left, Dan was so tired that I thought I could maximize my time out of the house and get a few extra things done at the office, so I stayed until around 7 p.m.

Then, I went to Target to get a special ordered Very High Calorie liquid protein supplement. Although Target was open, their pharmacy closed at 7:00 p.m. and no one had access to my order. (Arrrgghh!!!)

Then, I went to pick up Dan's new prescription at Walgreen's. I have put most of his prescriptions into weekly pill containers and I know he will be running out soon, so I tried to get the refills taken care of while I was at the pharmacy to avoid a future trip. Turns out, I asked too early, my insurance company won't let the prescriptions be refilled until Saturday. (Double Arrggghhh!!!)

Then, I went to Sendik's. While Dan is not able to tolerate virtually any fruits or sweets, there is one beverage that he is still able to enjoy. It is the Peach Mango flavored Fuze. Of all the beverages in all of the stores, it is the only one outside of water that he can stomach at this point. And, it has calories in it, so that's a very big deal!

Two days ago, I bought every bottle that Pick'n'Save had. Today, I found only 6 bottles on the shelf at Sendik's. I have tried many places...Sam's Club, Target, Walgreens...they don't carry either the brand or the flavor.

I talked to the Sendik's store manager to see if I could order more and he was very accommodating. The only problem is that they already have placed their order recently so mine would probably take a week. (Triple Arrgghhh!!!) If the Fuzes are anything like the Gatorades, by the time I have enough on hand, Dan's taste buds won't be able to tolerate them.

I learned something about myself today. When I hit the Triple Arggghh stage, I cry. I feel sorry for the store manager. He was very nice. When I explained that I REALLY needed this drink for my husband to help him through his cancer treatments, he told me he would call his other stores and get some for me very soon. When I'm weepy, I get worse when people are nice to me. So, I cried some more. And, then I cried all the way home.

I picked Sammy up from the stable after Dan's treatments and she kept a helpful and watchful eye on the house and her dad today while I went to the office. And, then, I encouraged her to go to the movies with a friend before I returned from my late afternoon/evening out.

When I got home, Dan was not doing well emotionally. I think the impact of the treatments are so bad that sometimes he wonders if he will make it through. And, being alone is a scary time for him right now. When I realized that my being gone added more stress to his situation, I cried even more.

I feel guilty for enjoying the time at the office and the opportunity to be living in the regular world. I feel guilty for not getting into the office more. I feel guilty for running so many errands in a row today. I feel awful that he is in so much discomfort. And, parent guilt...that really tops the chart. I feel like the kids could not have landed into a house with a worse mom...what was that stork thinking?!?!

I think Dan hit a concrete wall on Tuesday with his treatments. Today, I hit a concrete wall as the caregiver.

Tomorrow is Friday. Hopefully, we can stay out of the hospital over the weekend. We need the break.

And, even though we are in treatment hell...Dan's long term prognosis remains strong that he will be cured.

Someone wrote me once that when God closes one door, he opens another...but, sometimes it is hell in the hallway. That saying rings even more true today than it did when I first received it.

We have so much help, prayers and support from people and we have an incredible and gifted medical team...so I know our hallway hell is minimized. It's just that I don't want my family to be in this hallway anymore. :-(

I hope that new door opens soon!!

I remain incredibly thankful for the support we receive daily from family, neighbors and friends. In light of falling apart emotionally today, my spirits, as I reflect on the day, are buoyed by thoughts of special favors, kind e-mails, and nice words. I do not know how someone could get through this alone. I am grateful for the many wonderful people in our lives.

Margaret

Wednesday - Treatment Day 17

2007-07-11T21:19:00.000-05:00

Another rough day. The treatments are really starting to take a toll on Dan. It is becoming an effort for him to get himself up and out for his daily trips to the hospital. Sleep is the one thing that wants to override everything else.

The fentynal patch has started to kick in which has given him some relief on the pain. However, he has lost all desire to eat and drink.

I stopped trying to hit his daily calorie and fluid goals. Instead, I just push every couple of hours for something to make it past his lips and to his stomach. I don't know if this is a temporary set back or if this is how it will be for the rest of his treatments.

I'll talk to someone at the hospital tomorrow.

Usually, I check in with someone on his medical team when he is in radiation. Although, today, I went on a mad search to find a humidifier. At yesterday's consult, they talked about how crucial humidity is to someone whose salivary glands are being radiated. The nurse practitioner mentioned that sometimes patient wake up and have to pry their tongues off the roofs of their mouths with olive oil in the mornings.

I don't want to pry Dan's tongue off the roof of his mouth. :-(

So, in the 45 minutes Dan was in treatment, I was in/out/or calling as many hardware, appliance, and drug stores as I could find in the area. At my last stop, and with no time to spare, I finally found what I was looking for...a large capacity, quiet humidifier that could run 24/7 in our bedroom.

In my search, I can't even begin to explain how maddening it was to be told that what I needed this time of year was a DE-humidifier and NOT a humidifier since this isn't "humidifier season".

For an oral cancer patient, I think every season is humidifier season.

I didn't try to explain why I needed what I needed...all I can say is that it was not a boost to my day to be treated like a woman who wasn't smart enough to know the difference between something that puts moisture in the air and something that takes moisture out.

Sammy spent another fun day at horse camp and stayed at the stable with Elle afterwards. Then, she got her hair cut and she looked so beautiful that I drove her right over to Walgreens to get her passport photo taken. She's been wearing her riding helmet so much, I forgot what pretty hair she has.

Alex is still away experiencing new adventures at boy scout camp.

It's a quiet night here as everyone is a little exhausted from the week.

Tomorrow at noon, Dan will hit the halfway mark of his 35 treatments. That's something to smile about. :-)

Margaret

Tuesday - Treatment Day 16

2007-07-10T22:53:00.001-05:00

Well, it's official, post-chemo Tuesdays are ICKY days!

Dan had his 16th radiation treatment and we had our weekly consult with the Radiation Oncologist and Nurse Practitioner. While Dan is feeling like he's been run over by a train, they indicated that his symptoms are right on target for the time frame and they are pleased with his progress.

They could tell by looking in Dan's mouth that the pain he is dealing with is enormous. In addition to the pain pills they have already prescribed, they started him on a Fentynal patch today.

The patch takes 24 hours to start working, but then it only needs to be changed every three days and it should help manage the pain on a more consistent basis. The only challenge was finding a non-rashy area to apply the small patch too. In addition, they tried to encourage my medication-resistant husband to take more pain pills in an effort to alleviate the discomfort of eating.

They indicated that his most important job through the rest of the treatment is to try to keep his weight up and his fluid intake high. While that might not sound hard, Dan is too fatigued to eat, nothing taste rights and everything aggravates the blisters in his mouth...especially on Tuesdays, the day after chemo.

They gave him more oral numbing and healing medications that he was too sleepy and/or too distressed to try today. Tomorrow, he will have to add that to the routine.

We were both tired today, I was worried about Dan last night and stayed up until 3:00 in the morning reading posts and e-mailing people I have met through the Oral Cancer Foundation web site. (www.oralcancerfoundation.org)

While I thought that it made me better prepared for this morning's early a.m. consultation, I think Dan's medical team wished I would have slept instead as my list of questions and concerns was a little lengthy. ;-)

Like all of the other post-chemo days, Dan struggled with the fever and chills. And, today is the first day that he has started to feel like he can't go through with this. He has 4 chemo treatments and 19 radiation treatments to go.

When he is feeling so down, I feel bad. When I feel bad, I get edgy around the kids. Alex is lucky, he was away this Tuesday. Poor Sammy, she did not get the fun side of mom today. Fortunately, she was at the barn and with her friend, Elle, for a good chunk of the morning and afternoon.

It's hard, I keep expecting the kids to step up to the plate more when the going gets tough. Yet, they are kids, and they just want to enjoy the summer.

By the time we get the balance right, Dan will be better. Then, we are going to go on a vacation, maybe a cruise, and we'll make sure there are enough people on staff to take care of all of us. :-)

Margaret

Monday - Treatment Day 15

2007-07-09T22:26:00.000-05:00

Dan is sleeping right now. When he wakes up, he's probably not going to like my picture of the day that I took while he was waiting for the nurses to start the IV drip.

Although, the purpose of this blog is to document Dan's journey, and the rash is playing a very prominent role in Dan's treatment.

Today, at the hospital, once again everyone was far more excited about Dan's Erbitux rash than Dan was.

The rash, which covers his back, shoulders, face, scalp, chest and stomach is painful. It is hurts to get dressed, it hurts to move, it hurts to sit still.

Today, one of the nurses told Dan that when the rash is gone, his skin will be have all new cells and that his face will look better than the best chemical peels on the market. Although, she got a smile out of Dan, I think he was pretty happy with his previous 48 year old skin...the skin that didn't hurt every moment he was awake...or bled while he slept.

In light of the pain that Dan is tolerating from the rash and the radiation...and, also from the fatigue that has hit him extremely hard...he's not one to complain. You can see the pain in his eyes and he has to labor to chew and swallow.

I can tell when the nurses and doctors look inside his mouth and at his skin that they know he is in a significant amount of discomfort. Yet, Dan takes each day with a great attitude and more strength than I think I could personally muster.

This morning, prior to leaving for Dan's day long chemo-radiation fest, Dan's mom called after reading yesterday's post about Dan's fever. She wanted me to know that of her three children, Dan was the one who always had a fever when he got sick as a child. It's funny that she called, because during yesterday's unplanned visit to the hospital, Dan's chemo doctor asked him if he had a history of running fevers...and, both he and I said no. Since I have known Dan he has rarely been sick, and apparently those childhood fevers are a long and distant memory to him. :-)

They decided to keep Dan on antibiotics through this next course of treatment in anticipation of a potential fever or suspicious infection. They also added a steroid to his chemo drip to help ward off a fever. So far, he managed to get home, eat and get to bed without a fever knocking him down...that's a great sign!

Our day was quite long, I think we got home around 8:00 p.m.

Sammy is a junior counselor at horse camp again this week. It ended around noon, and since we knew we had a long day ahead of us...we planned for Sammy to spend a day with her best riding friend, Elle and her family. She had a such a great day.

Elle and Sammy took lessons together for years. And, today, Sammy enjoyed the opportunity to ride after camp with Elle, and Elle's sister, Gwen and another new friend, (also named Sammy) that she made at camp today. Then Elle's mom took all four girls to her house for the rest of the day. Sammy was pretty tired when she got home, but it went down in the books as one very fun summer day for her!

We're hoping that Alex, too, had a fun day at his camp. Cell phones aren't allowed, so we will have to wait until Saturday to get an update from him.

When we got home, we were greeted by the nicest note from a wonderful friend, Vicki. She had filled our fridge with an amazing meal while we were gone that included very tasty pasta salad, grilled chicken, fruit, seltzer water and special Amy's candies. And, the daisy's she left on the counter brightened our day.

Dan was able to enjoy the very kind gesture and the food (which he enjoyed even though he had to eat it quite slowly) and then retired to bed. Monday's are extremely hard on him. It was nice to have such a special meal ready and waiting so he could get in the nutrition he needed before falling asleep.

So far, everyone seems happy with his nutritional progress. To-date, he has only lost 10 pounds. The first five came off sooner than they would have liked, but the last five came off slower so they gave him much encouragement today that he was doing well. We owe much of that to the many people who have helped us with meals during our long days at the hospital.

Although we are just entering the tough times that the doctors have been warning us about, we stay optimistic and encouraged by our neighbor's success. Our neighbor was nearing his final treatments for oral cancer the week Dan was diagnosed. And, now, five weeks post-treatment, he is looking energetic and healthy.

It takes many months to get all the energy, stamina and appetite back from these treatments...although, life gets significantly better when the good days outnumber the bad.

Seeing both my neighbor and his wife out and about and doing well today helps me keep the perspective that this is a temporary time in our life. One we will look back on and never forget. One that will make us appreciate our health, our family, our friends and each day in a whole new way.

Margaret

Sunday - July 8

2007-07-08T22:22:00.000-05:00

It was a rough day today. It started with a fever that Dan was trying to ride out throughout the night. At 7:00 a.m. I called his doctor expecting him to schedule extra lab work for tomorrow. Instead, he wanted Dan to come to Froedtert immediately.

I explained that I had planned to drop Alex off at the meeting point for his boy scout camp. And, the doctor gave me permission to take a little extra time to get to the hospital. It also gave Dan time to mentally prepare for going to Froedtert on one of our "off" days.

Dropping Alex off was hard for me. I wanted to make sure he felt comfortable heading out to his new adventure, and yet I was worried about Dan. I was glad I had a chance to briefly meet some of his fellow campers and leaders. He will be with a great group of people. We are thankful for our neighbors in encouraging Alex (and us) to try this camp. It sounds like he will have an incredible time.

As Alex rode off, I went back home and picked up Dan. When we arrived at the very dark and quiet vestibules of the oncology center, we found a small group of medical people who had a room ready and waiting for Dan. After getting his blood drawn, a strep test and various diagnostics done, Dan was told that his main chemo doctor wanted to see him and that he'd have to settle in for a few hours to allow the lab time to process his tests.

Dan's doctor did come, and he remains perplexed at this current fever...even more so than the previous fevers. He said that the last dose of Erbitux should be out of Dan's system for the week and he was concerned that the fevers and chills came on so late in the week.

On a good note, Dan's blood counts are at a healthy level. On the remote chance Dan might have an infection lurking around, he still has the capability to fight it. But, overall, chemo doctors do not like their patients to get fevers!

After the doctor left, the nurse tried to keep Dan in the room long enough to give him a bolus of IV fluid for hydration and some "radiation rinse" to numb his throat. The radiation is starting to produce mucositus (blistering inside the mouth and throat area). I haven't looked at it, but judging from the faces of Dan's doctors and nurses, I am guessing that it is more painful than Dan is letting on.

However, once Dan's doctor told him that all his counts were fine and that all of the primary concerns regarding the cause of fever were alleviated, the nurse could not contain Dan another moment. Dan promised to stay hydrated and told the nurses he would take his pain meds and a few minutes later we were in the car and heading home.

So, another long Froedtert day...on what was supposed to be a Froedtert-free day. :-(

Sam was a little disappointed. She was looking forward to spending her first "brother-free" day at the stable.

Although, she had a great day. She had fun taking care of our neighbor's dog and spending some time with her friend, Drew.

It was a hot day today, and eventually in the evening, Sam and I did make it to the stable. I enjoyed watching her ride her favorite horse, Mick.

Apparently, there is a new foal that was born recently, but I forgot to check out the pastures to take a picture.

The weather was quiet pleasant tonight and I had a chance to chat with one of the owners at the stable. The people that own the farm are such kind and amazing people.

Margaret

Saturday - July 7

2007-07-07T23:37:00.000-05:00

It was a quiet Saturday at our house. While the kids were spending their last moments in Door County, Dan and I replaced our morning walk with a list of errands. Alex is going to his first boy scout event tomorrow (a week long camp) and we wanted to make sure he had all of the items on the packing list.

Dan started the day strong, but after awhile the the errands started to take a toll on him. He's a little on the tired side today. And, his throat is just starting to feel the impact of the heavy doses of radiation he has been receiving. The chemo rash that makes his doctor smile with delight...because of the belief that a big rash means a big cure...has Dan in a great deal of discomfort. He finally succumbed to his medical team's recommendations to take some pain pills. I felt relief when he did as it makes me feel sad when I can see the pain in his eyes.

Later in the day, my parent's came to visit when they brought the kids home. We are still trying to figure out how they managed to squeeze in so many activities in Door County over such a short time period. They got to do some neat things, like going to an art studio and making cool things out of fused glass, they ate at their favorite restaurants (including their grandma's kitchen), played mini golf, went to the driving range, went horseback riding and saw a musical comedy at an outdoor theater that they look forward to attending every year.

And, in between all these activities, my kids and my nieces kept a multi-day game of Monopoly going. All in all, it sounded like a very successful adventure.

My parents stayed for dinner, which was pretty easy to get on the table, as my sister Cheryl has been keeping our freezer stocked with meals.

It was nice to have the kids home again. Although, after my parents left they were pretty tired.

Alex was quite the trooper in getting the rest of his things ready for camp. When we had everything set out his older friend, Doug, came over to assist us in making sure we didn't forget any of the obvious items. Doug thought my mom-notion of a clean outfit for every day was a little over the top. So, Alex, gladly pulled out half the clothes and smiled at the idea of wearing the same (dare I say smelly) things for multiple days. :-)

Tomorrow, he will leave at 8:00 in the morning for his first week-long overnight camp. I am sure he will have some great stories for us when he returns.

Dan's brother, Tom, called which was a highlight in Dan's day. And, right now (at 11:30 p.m.) Dawn and Gary, my sister and brother-in-law, are in the process of a late night run to our house to deliver Alex's glasses...which Alex figured out as we were packing tonight that he accidentally left in their car on the way up to Door County.

Also today, our friends gave Dan something special to help him through his treatments and recovery. It is called a scapular pendant. Their personal history of how they got and have distributed the scapulars brought tears to my eyes. We were very touched by the gesture.

We're feeling pretty lucky to have such great family and friends who have been supporting us and praying for us from the moment Dan was diagnosed.

Margaret

Friday - End of Week 3

2007-07-06T21:27:00.000-05:00

Another Friday, another check on the calendar. Treatment day 14 went off without a hitch. I am amazed how Dan's body can be taken down so hard by a chemo treatment early in the week and recover so well by the end of the week.

Dan has completed 14 radiation treatments and has 21 to go. As of today, he is 40% through his treatment schedule and only experiencing minor discomfort in his throat and from his chemo rash. He's a little frustrated that foods don't always taste as good as they smell. But, all in all, he's upbeat, optimistic and taking each day in stride.

Even though our team of doctors, nurses, techs and administrative people have all become familiar and warm faces to us, we are looking forward to the upcoming Froedtert-free weekend.

The kids had another action packed day today with their cousins and grandparents in Door County.

All in all, a very nice day.

Margaret

Thursday - Treatment Day 13

2007-07-05T22:32:00.000-05:00

Today was one of Dan's better days. Dan is back to feeling as good as a guy (who is getting blasted with radiation and chemo) can feel. :-)

His mouth is a little sensitive, his voice is a little softer and his rash is a little painful. Although, it was fun to see that he had more energy today than he has had all week. His spirits were very high. And, he had a great appetite for some homemade macaroni and cheese along with cooked spinach...one of his childhood favorite meals.

After today's radiation treatment, Dan and I both had an appointment with the same hearing specialist to get a steroid injection in our right ear drums. As odd coincidence would have it, I lost 80% of my hearing in my right ear overnight back in March. Dan's original chemo, Cisplatin, caused him a slight hearing loss (also in his right ear) a couple of weeks ago.

My right ear isn't really functional, Dan's still is. But, we both have tinnitus, which is a constant and annoying ringing in our ears.

Through Dan's original Froedtert doctor, I became aware of a specialist at Froedtert who deals with sudden onset hearing losses. I saw him on Tuesday, and Dan had to tag along because we were there together. The doctor decided to treat both of us right away. He said my chances were slim, because much time has elapsed from when the hearing was lost. (I tried to get on his calendar earlier, but he was booked for almost 2 months).

I was feeling very lucky today, so even though the chances are about 5% that this will work, I decided to go for it.

Dan's chances of regaining his hearing and loosing the tinnitus are much higher than mine because his loss is only a few weeks old. We verified with his MO to make sure that it was ok for Dan to have the injection, and we got a thumb's up.

So, we both went through the very odd treatment of having our eardrums numbed, and then filled with a liquid steroid. Afterwards, you can't move and you aren't supposed to swallow much for an extended time. In a week, we will know if the injections are helping and then they will do another one.

I do believe we are the only husband and wife team who has ever come in for the injection together. :-)

I wish my old ENT would have referred me to someone who could have tried this sooner, the success rate is very high when caught early. I think he gave up on me too soon. We are learning that we have to be much more proactive in our health care.

Oh well, wish us luck...we are hoping and praying that the injections work for both of us.

Sammy and Alex finally made it to Door County for a mini vacation with their cousins and grandparents. Dawn and Gary, my sister and brother-in-law, drove their daughters and my kids to meet my parents. Sammy and her cousin went horseback riding and Alex and his grandpa are planning on playing some golf. And there are a few other favorite spots the grandparents will take the kids.

When we spoke to Sammy and Alex tonight, it sounded like they were having a great time. They've been working hard around the house to help us, so we are glad they are getting a well deserved break.

We are very sad tonight that our very good friends lost their dad/father-in-law/grandpa early this morning to liver cancer. Our thoughts and prayers are with them during this difficult time.

Margaret

Happy 4th of July!!!!!!

2007-07-04T16:52:00.000-05:00

Yipee!!! They don't do radiation treatments at our hospital on holidays.

Dan enjoyed having a free day to get in some much needed rest. And, as a result, Dan is feeling significantly better. :-)

Sammy's a little under the weather today...we think she is having a mild reaction to the steroids the doctor gave her to manage the allergic reaction to the penicillin she received for strep. :-(

We're hoping that this will be the last of her woes for the summer.

And, then she and Alex are going to have to take a pledge to stay healthy for the next few months.

The doctor told us this past Monday that if the kids get anything contagious...they will have to be separated from Dan.

Hmmm....Too bad we sold that backyard swingset with the nice little wooden playhouse last year...we might have been able to make good use of it this summer. ;-)

Margaret

Tuesday - Treatment Day 12

2007-07-03T19:46:00.002-05:00

There's no sugar coating this day. It wasn't a fun one for Dan. He had another bad after-chemo day. His doctor does not understand why.

His MO said that Erbitux reactions, if they occur, generally happen within an hour of administering the treatment. Yesterday, post-treatment they intentionally kept him in the treatment room for monitoring prior to letting him go on to radiation.

Dan's reactions come on later and are lasting longer than is typical.

Tonight, I spoke to Dan's doctor who remains concerned that Dan might have some type of infection and prescribed antibiotics (for the possible infection) and steroids (for the possible chemo side effects).

Dan does not like medications and does not want to take either one. He also isn't interested in eating or keep up with his fluids today.

Prior to treatments, Dan made the decision to put his fate in God hand's along with this particular team of cancer specialists. So, when they say eat, I make sure he eats. When they say take medications, I make sure he takes what is prescribed.

At this moment, I think Dan wishes I would ignore the doctors and just leave him alone.

His "good" rash is spreading and, unfortunately, it is very painful. His throat is starting to get uncomfortable from the radiation treatments. His taste buds are changing and more are dying off. His fever is nearing 103 and he is very tired.

On a good note, tomorrow is another day. And, if the week goes at all like last week did, he should be feeling much better soon. And, on the calendar, we were able to mark off his 12th radiation treatment. He is over the 30% mark.

Tonight, Sam voluntarily took on the role as short order cook and she made sure everyone got fed. Dan got his dinner delivered to him in bed. She enticed me with a plate of spaghetti as I was heading out the door to get Dan's prescriptions. And, she made noodles for Alex, just the way he likes.

I admire how she jumps into action to help when I am feeling edgy about Dan's situation.

And, I appreciate that Alex will help out with tasks when he is asked...which was often this evening.

They are pretty amazing kids!

Margaret

Monday - Treatment Day 11

2007-07-02T17:58:00.000-05:00

Today, we had a partner in crime with us. Alex came to the hospital to help get his dad through his chemo and radiation treatments.

Dan's doctor was very happy to see that his rash from the new chemo drug has surfaced so quickly and aggressively...he believes it is an excellent sign that the drug is doing what it should be doing. (Unfortunately, Dan is not quite as excited as his doctor about the rash...but, that's pretty understandable.)

After some lab work, Dan had an IV drip of chemo and then magnesium which took a long time. Then, Dan had his 11th treatment of radiation and another dietary consultation before we could call it a day.

In total, we were gone 10 hours. Towards the end of our day today, my sister stopped by with more meals to stock our freezer. Pretty soon, we are going to have to get a bigger freezer. :-)

As we were talking with Cheryl, I asked Alex if he thought the day was as tiring to him as it was to me. He said he didn't find it tiring at all. Then, five minutes into the car ride home, he was in a deep sleep.

It was nice to have Alex along. When Dan wasn't on the phone working or groggy from the medications, the two managed to play some games to help pass the time. And, I was able to sneak off to the little library room I found recently to work on my laptop.

Unfortunately, they were a little backed up in radiation so Alex didn't get the grand tour that Sammy did. But, Brian, the RT tech, promised to show him around another time.

On the home front, the Benadryl helped Sam through the night with her rash. Although, every four hours she would wake up as the old rashes would be fading and new ones were appearing with gusto, By 7 in the morning, and after 3 doses of Benadryl, she started to show more rash than regular skin.

My next door neighbor, Julie, was Sammy's "mom for the day". She took Sammy to the doctor who determined that Sam's allergic reaction was from the penicillin she had received for strep throat two weeks ago. Unlike Dan's rash, the doctor didn't think Sammy had a "good" rash, so she put her on a steroid. Julie got Sammy's prescription filled and bought her some special bath salts to soak in. Within a few hours, she was starting to feel comfortable again and the bumps and red patches started to subside. As an extra bonus, Julie taught her how to make her famous chocolate chip cookies. Sam is excited to try making another batch soon.

After another long Monday, it was nice to return home. Our neighbor, Dottie, treated us to a special dinner tonight that included a beautiful bouquet as a centerpiece and a meal so pretty and delicious we felt like we were dining in a fine restaurant. If Dottie wrote a book with all her knowledge on how to entertain, I am quite sure it would be a best seller.

After a few good hours at home, Dan's fever and chills came back. Today, they doubled the time to administer the chemo in hopes they could thwart the fever. But, I guess that didn't work. So, tomorrow, they'll probably want to do more lab work again. :-(

On an up note, they don't do radiation on holidays. So, Dan will get a mid-week break from treatments on Wednesday, July 4th. This means that he already has 25% of his treatments done for the week. :-)

Margaret

A nearly normal Weekend

2007-07-01T20:19:00.000-05:00

Dan's upswing continued through the weekend. He still needs more sleep than the average bear, although when he's up, he's feeling great.

After a couple of weeks filled with highs and lows, we were both surprised and happy that Dan was able to take a quick work trip over the weekend. He left on Saturday morning for Cincinnati to tie up some loose ends and was home by noon on Sunday.

The new chemo drug must be working well as the acne-type rash Dan was forewarned about numerous times has started to surface on his chest and neck.

We keep thinking that someday, after this is all behind us, we will take an amazing family vacation to someplace we have never been. Dan's passport is currently expired and for the past few weeks we have been meaning to get his passport photo taken. We finally took care of that today as we noticed the chemo rash heading up his neck towards his face. Now he has a nice passport picture with a great smile and NO rash. Mine is expiring soon and the kids need passports too. Soon, all of our passports will be in the works and we can continue to dream of future far away destinations.

Dan's rash is a temporary side effect that will likely remain in some form throughout treatment and is NOT contagious. So, imagine our surprise when Sammy showed us earlier this evening that she had a rash too. And, as spots started to surface on her body out of thin air, we started to get a little concerned.

Fortunately, we live by really smart neighbors who have 3 boys in scouting (1 who is an Eagle scout and another who is well on his path to being an Eagle Scout, too). I figured their knowledge of rashes, bug bites and first aid in general far surpassed mine...and, I was right. They were great first-aid detectives and helped determine that she was having an allergic reaction to an external substance that could simply be treated with Benedryl. So, hopefully she'll be feeling better soon.

Rashes aside, this weekend was the first time things felt nearly normal since Dan was diagnosed.

Sam had an opportunity to meet up with friends for lunch on Saturday and then went to sleep over at her cousin's house on Saturday night. And, Alex had one of his favorite soccer pals over to play by the creek, watch fireworks and sleep over at our house.

I, per a typical weekend, created a huge to-do list of which much got started but very little got done. :-)

And, my sister, the one who creates huge to-do lists and actually DOES gets everything done in one weekend, was so kind as to put some more meals in my freezer when she dropped off Sam earlier today.

When Dan is better and we're not going to Froedert every weekday, my family will be quite disappointed in the return to my lackluster cooking. :-(

Margaret

Friday - End of Week 2

2007-06-29T18:50:00.000-05:00

What a difference a day makes!!

When I picked up Dan tonight for his evening treatment he was back to his chipper self. In fact, today was his best day since he started his first day of treatments. It was a nice way to end the week. And, we were happy to cross off another day and another week off the treatment calendar.

For the first time, Sam came with us to Dan's appointment. During Dan's treatment, Brian, one of Dan's radiation technicians, explained to us how the IMRT radiation works. For a short while, we were able to watch Dan on a monitor. When the treatments were complete, Brian brought us into Dan's room to show us how they do the positioning work to make sure Dan is in precise alignment prior to each session.

To be honest, it was the first time someone explained the treatments in a way that made sense to me. And later, when we shared Brian's tutorial with Dan, he found it interesting as he learned some new things too.

Sam and I both liked Brian, he is a very nice man. And, we liked the pin he wore on his lab coat. It said "Cancer Sucks". Our sentiments exactly!

Margaret

Thursday - Treatment Day 9

2007-06-28T23:17:00.000-05:00

Dan's fever and chills continued through the night and when we went to the hospital they did a thorough work up on him. They are thinking that he has an unrelated infection, however, whatever it is...it did not change his white blood counts, so that was a good thing.

We spent longer than planned at the hospital, as his treatment team is very thorough. When we did get home, the mild headache that was bothering him throughout the morning turned into a monster headache. Fortunately, we have pills and prescriptions for everything. He took some more tylenol for the fever and something quite strong for the pain and then slept for the remainder of the day. He has a late afternoon treatment time on Friday, so if anything unusual continues to persist, they will be sure to check him out again.

I had to wake Dan around dinner time to get him to eat some food and drink more fluids. The sleep and the medications gave him some relief on the headache and he was able to come down and chat or about an hour. Then, he was tired again and retired for the evening.

I'm so impressed with how often his nurse at Froedert called me to check if there were any changes and to see how Dan was doing. We both feel like he is in such good hands at Froedert.

While Dan was sleeping, my parents came into town from Door County to help with some things around the house. The most pressing was a failing garbage disposal that made an awful noise every time someone turned it on...this was not a good thing for Dan as the first round of Chemo gave him an unsettling sensitivity to certain sounds. Now, we have a very quiet garbage disposal...it's so quiet, I hope that the kids and I remember to turn it off when it is done. :-)

We had so many pleasant surprises today. In addition to my parents coming to help and bringing a wonderful pan of home-made brownies with them, my sister, Cheryl, brought us some amazing meals. My kids are feeling like they hit the jackpot, because her daughter, Stacy, also made the kids a pan of yummy brownies. And, a surprise visitor, Vicki, brought the kids some of Amy's famous caramel apples along with an encouraging note to them. The kids were pretty happy about their "haul".

Dan's taste buds will change and potentially disappear temporarily during treatment. The first thing to go for Dan was his taste for sweets...so, the kids couldn't have been happier when the house was filled with tasty surprises that they could enjoy. The meals were greatly appreciated.

The kids seem to take turns offering an awesome amount of support to the household. Today, Alex spent the day inside helping my dad, my mom and me in every possible way. We were all really impressed with his attitude and his desire to help. Way to go Alex!!!

Sam was busy at the horse barn today and then went skating with her cousin...who stayed the night and will go to the barn with Sam tomorrow.

My parent's leave today and we will miss them. Occasionally, Dan and I are overwhelmed at how much time is spent each day going back and forth to the hospital and how little we are able to get done at home. Having extra help around for a day was a wonderful Godsend.

Margaret

Wednesday - Treatment Day 8

2007-06-27T20:38:00.000-05:00

Today was a marathon day at Froedert. We left the house at 7:00 a.m. and returned home about 6:30 p.m.

Dan had a nuclear test done for his heart. After the results were interpreted, he was cleared for the new chemo treatment. The medication they gave him prior to the IV drip quickly put him to sleep and he dozed on and off through most of the treatment. Then, he had to stay put for awhile so the nurses could monitor him for serious side effects. Fortunately, he didn't have any.

As un-fun as a chemo treatments are, they really treat Dan well at Froedert. The two times we have spent a big part of the day in the chemo area, we were put in a nice-sized, private room. The nurses are very kind and bring plenty of beverages and toasty warm blankets. (It might be hot outside, but inside Froedert it generally feels like a refrigerator). I like that the nurses are nice to me too and that I get as many warm, toasty blankets as Dan does. :-)

From the chemo area, we headed off to radiation and Dan had his 8th treatment. As I was waiting for him, I was struggling to stay awake myself...which doesn't make any sense, because it was Dan who got the sleepy medication and not me.

We were both glad when we were finally able to leave the hospital.

We came home to a nice home-cooked meal that our neighbor, Julie, prepared. The meal was very much appreciated as we were both worn out for the day.

Around 8:00 p.m., Dan started to get a fever and chills and I paged his Medical Oncology doctor who was quick to respond. His doctor couldn't quite figure out why Dan wasn't feeling well, as those weren't typical side effects, so he decided he wanted to see Dan early tomorrow morning. He was very reassuring that it was probably just an odd coincidence.

We were grateful that the kids were not home alone all day. After horse camp, Sam was picked up by Cindy and her friend, Drew, and she was able to spend a nice afternoon at their house. And, after summer school, Alex met his buddy, Calvin, for lunch and then they had a fun afternoon biking, swimming and playing at Calvin's house.

Also, it was nice of my sister to show me where the Sam's club was near Froedert. We were able to duck out for a short time between the nuclear test and the chemo treatment. Dan needs to stay very hydrated throughout his treatments, so I had a chance to buy a truck full of Gatorade...which has been his drink of choice since the beginning of treatments. And, yes, now that I have a truck full of Gatorade I am fully expecting his taste buds to start craving something else soon. :-)

It would be hard to imagine getting through each day without all of the help, encouragement and prayers we are receiving daily.

Many thanks!

Margaret

Tuesday - Treatment Day 7

2007-06-26T20:24:00.000-05:00

Today, the RT (radiation therapy) department was able to find an opening in their busy schedule to squeeze Dan in during the morning hours so we could make it to Alex's baseball game in the evening. It was a fun game to watch, they played a previously undefeated team and won 20-10! Alex is sporting a new injury that he got sliding into home...although, that didn't stop him from getting a few more runs in.

All in all, it was a great day for Dan. His fogginess lifted and he is feeling much better. We met with his RT doctor and he said the lymph nodes in his neck are no longer palpable. Unfortunately, that doesn't translate into a shorter treatment schedule. However, it is a wonderful sign that the RT and Chemo are making a strong headway.

While Dan was in treatment today I had a chance to visit with my sister. She works at Froedert. I think they should add entertaining me to her job description, but I am not sure that's what they had in mind for her when she was hired. ;-)

Our day ended on a high note. Sammy did a wonderful thing, she opted out of going to the baseball game so that she could treat us to a clean house. I hope when she reads this she will know how much that meant to us. Thank you, Sammy!

Today, after completing his 7th treatment, Dan hit the 20% mark of his treatment plan. (Not that we're counting...OK... maybe we DO keep a calendar... and maybe we ARE counting down the days...)

Margaret

Monday-Treatment Day 6

2007-06-25T22:38:00.000-05:00

Dan had a much better day today. The fatigue and the foggy feeling that Dan has been experiencing eased up this morning and he was able to work from home until we left for his doctors' appointments.

Dan's chemo doctor decided to change the treatment plan. Instead of 3 Cisplatin treatments over 6 weeks he will get weekly treatments of Erbitux (also referred to as Cetuximab...or, at our cancer center they call it the Martha Stewart drug, as it is the center of her insider trading allegations).

Dan's doctor was glad he got one course of Cisplatin in. (That is currently the gold standard of treatment). Although, today, it was determined that the side effects will outweigh future treatment benefits. Dan is experiencing a great deal of tinnitus (ringing in the ears) and has some hearing loss. He won't know the long term impact of either of these concerns for a couple of weeks when the Cisplatin is out of his system and he meets with an audiologist.

The Erbitux has less medical data behind it, since it is has only been FDA approved for a couple of years. However, the success of the drug for head and neck patients has been very strong and our doctor feels confident in the change of course. It works entirely different than the Cisplatin. The main side effect is a temporary acne type rash. Our doctors said they are starting to see that the stronger the rash the better the drug is working. So, we will be hoping for a good strong rash.

We also met with his nutritionist today. Dan lost some weight over the weekend and is down about 5 pounds from Day 1 of treatments. They don't like to see more than 1 or 2 lost pounds per week, so she gave us a number of ideas to boost his calorie intake. Personally, I think if they'd stop scheduling his appointments over the dinner hours, that would help a lot. :-)

Sam started her first day of horse camp for the summer, she is a counselor and is helping to teach younger kids (ages 5 and 6) to ride.

Alex had summer school in the morning and was able to play with friends all afternoon.

Both Dan and I were a little on edge this evening, long days at the hospital are a little draining on both of us. Hopefully, it'll get a little easier as time goes on.

Margaret

A lazy Sunday

2007-06-24T23:41:00.000-05:00

After a wonderful Saturday, Dan took the opportunity to have a very restful Sunday. We took our morning walk, and then Dan went to lie down for the day.

It wasn't long before I joined him, as I got hit hard with a migraine...which left the kids to fend for themselves. On a good note, we were watching the neighbor's dog, which game them some extra company. And, the kids were helpful in getting a few things done around the house. Then, Sam did a great job cleaning her room and Alex, as usual, found some friends in the neighborhood to play with.

Dan was able to get up and grill a nice dinner, and then he was worn out again and ready to call it a night.

We're looking forward to seeing Dan's chemo doctor tomorrow as the fatigue, the fogginess and the ringing in his ears seem to be persistent.

Margaret

A fun Saturday

2007-06-23T23:00:00.000-05:00

Today, Dan woke up tired and foggy. He also had the unpleasant surprise of a having a loud ringing sound in his ears and a super sensitivity to certain noises (like the clattering of dishes being unloaded from a dishwasher or a cupboard door closing). We are certain that these are side effects from the chemo and, fortunately, we already have an appointment scheduled with our Medical Oncologist (MO) for Monday.

Dan's still a little in awe of how out of sorts he is feeling from the treatments. However, our neighbor (who recently finished the same chemo/radiation regime that Dan is undergoing) and his wife were so encouraging on how well they think Dan is doing.

Dan managed to go for a walk in the morning with me and then took a long nap. He added an extra pill to his medicine regime which helped clear some of the fog later in the afternoon. And, then he was able to go to a tailgate party and Brewer's game with the kids and some friends. Between the tailgate and the 9 innings, Dan was awake for over 8 hours and did really well.

Our friends, Kathy and Bob, put out a spread to remember...it started with an amazing avocado soup and included tenderloin, shrimp, crab and seared tuna and some tasty sauces. On the way home, we couldn't decide which dish was our favorite. The dessert sorbet with the special mango sauce was also pretty astounding.

It was a great way to spend a beautiful afternoon and evening. The company was wonderful, the weather was perfect...it was a top notch day!

The Brewers' won 7-1. (Not that I was watching much, I talk a lot during baseball games.)

Margaret

The end of week one

2007-06-23T21:00:00.000-05:00

On Friday, June 24th at 6:30 p.m., Dan successfully finished his first week of treatments. We wished we could have gone out and celebrated, but he was too tired. He had a day of hydration and chemo drips on Monday and at the end of that day he had his first radiation treatment. The radiation treatments continued through Friday.

On Thursday, the fatigue from the chemo started to set in along with a fogginess that made it difficult to concentrate. On Friday, the symptoms persisted.

He was one of the lucky ones. His chemo is quite strong, and many people do not tolerate it well. He had an aggressive anti-nausea medication regime. And, in his case, the medications worked.

When he got weighed in on Friday, he had only lost less than one pound. That was a great accomplishment.

At a minimum, he has to drink 80 oz of water/fluid, take in 2400 calories, and he has to get in 100 grams of protein. This will be the dietary requirements throughout his treatment.

He has lost the taste for some fruits, but is still able to enjoy most any food. His appetite has diminished, so eating is a little bit of an effort. He's doing a great job with the fluids. And, he is getting a lot of rest.

We were grateful for the meals that Cindy prepared for our family. The 3-4 hours daily commute and treatments has us out of our regular routine and we haven't quite adapted. And, the special cake that Julie sent over for Father's Day was also a wonderful treat for the family to enjoy throughout the week.

Calorie-wise, we are suppose to try to keep Dan's weight up, although, I have to keep reminding myself that it is just Dan who is supposed to up his calorie count...and not me. =)

Dan has 2 more chemo treatments and 6 more weeks of radiation.

Margaret

A little history

2007-06-22T20:30:00.000-05:00

On May 15th, 2007, Dan had a lymph node removed to be analyzed by a lab. It was a procedure that almost didn't happen. Dan's painless swollen lymph node had started to shrink and the ENT wasn't sure the procedure needed to be done. An early CT scan did not indicate nor did it rule out cancer.

Dan decided that since he was there for the appointment, he'd go ahead with the procedure. No one expected the node to be cancer, this was all very precautionary steps.

On May 17th, the ENT called with the shocking results. The node had poorly-differentiated squamous cell cancer (SCC) in it. However, with no symptoms anywhere else, he had no idea where the source cancer was.

The ENT managed to schedule Dan for a PET scan on May 18th, and we got the results later in the day. The source was at the base of his tongue (BOT), in the throat area. The specific spot is called the vellicula. It is an oral cancer.

The next month was a flurry of consultations with an ENT surgeon, a Medical Oncologist and a Radiation Oncologist at Froedert. After his case was presented to the tumor board, and a biopsy was done on the tongue to confirm the cancer source, his treatment team recommended that Dan have 3 rounds of Cisplatin (chemo) concurrent with 7 weeks of daily radiation.

The outlooks is very positive. The belief is that the source cancer has been there for quite some time but was less than 2 cm. The concern is that this little cancer source went to 3 lymph nodes, so the treatment plan is aggressive to make sure they knock out any microscopic cancer cells that might be lurking in the lymph system.

The way it was explained to us, with head and neck cancers, the chemo is used to weaken the cancer cells, and the radiation is used to kill them.

On June 18th, one month after Dan was diagnosed, we spent the day at Froedert while he went through the chemo process and his first of 35 radiation treatments. His chemo treatments are spread out over the course of his radiation, and all treatments will be complete on August 6.

The good thing about the treatments is that it should eradicate the cancer. The sad thing is that Dan was feeling 100% at the beginning of the treatments, as the unknown cancer was not causing him any pain or symptoms. So, his next hurdle after the treatments will be to reclaim his pre-treatment strength, weight and energy.

Margaret