Friday, June 29, 2007

Friday - End of Week 2

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, June 28, 2007

Thursday - Treatment Day 9

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, June 27, 2007

Wednesday - Treatment Day 8

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, June 26, 2007

Tuesday - Treatment Day 7

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, June 25, 2007

Monday-Treatment Day 6

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

Sunday, June 24, 2007

A lazy Sunday

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

Saturday, June 23, 2007

A fun Saturday

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

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

Friday, June 22, 2007

A little history

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