Thursday - Treatment Day 22

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

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

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

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

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

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

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

Alex had a fun day playing with his friends.

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

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

Margaret

Wednesday - NO Treatment Day :-(

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Margaret

Tuesday - Another Note

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

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

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

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

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

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

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

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

Margaret

Tuesday - Treatment Day 21

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Margaret

Monday - Treatment Day 20

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

July 15 - A pesky Sunday

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Margaret

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Margaret

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

I woke up this morning in awe.

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

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

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

Margaret

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

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

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

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

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

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

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

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

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

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!!!!!!

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

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

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