I wanted to write yesterday, but was too exhausted. We all went to bed very early last night. Actually, Al went up to bed right after his treatment and didn’t even come downstairs again. I ended up bringing him up some food. I’m not sure if that was good for him because the doctors say he needs to move. I’ll try and get him out for a little walk today. He was a little bit nauseous, but didn’t want to take anything. I told him to take something because that’s what the medicine is for! He is just so stubborn. Let’s hope that helps further into treatment. We did see the radiation oncologist yesterday and she examined him and said that the tumor feels softer and smaller already! That is only after 8 treatments, so it was very encouraging. She also checked to make sure he isn’t getting any rashes from the Ethyol. So far, so good.
I now have something to take my mind off the cancer. Brooke saw the ENT yesterday (same one that diagnosed Al) and he said she needs surgery to remove her adenoids and put tubes in her ears. That should help with the constant congestion that is causing numerous ear infections. The allergy pills and nose spray aren’t working and the allergist couldn’t find any allergies, so it makes sense that the adenoids being too big are what are causing the problems. Its outpatient surgery and she will have to miss a few days of school.

Yesterday's treatment went very well. Al's son came in the other night, so he is back at the treatment center with him this morning. It's a good little break for me, even though I really don't want to miss out on anything. I haven't really wanted to let Al out of my sight since the diagnosis. But, I know that's not healthy. He hasn't had any nausea so far. He ate well and then napped for a little bit, but got up to work on the computer and play some chess. He had the nerve to yell at me about throwing away the rest of the wine! He said he was feeling well enough for a little glass. I don't think so. He did later apologize after coming to his senses. I did have to set him straight and let him know that he needs to be proactive in this fight. I can't be a constant nag and tell him to drink, eat, take his medicine, apply lotions and rinse his mouth. I think it sunk in because he has started doing these things on his own. Of course, that doesn't mean I won't still nag. Thanks again to Rachel's teachers; we had a great meal along with a yummy desert. It feels so good to have this support. Al keeps telling me to let everyone know how much we appreciate everything.

The weekend is almost over and I'm getting knots in my stomach again tonight because it all starts again tomorrow. What's scary is that they say each day will get harder and last week was already pretty bad. It's like you'd think your body would somehow adjust to what they are doing to it or what medication they are pumping into you. That's how most medications work. Doctors often tell us that the side effects wear off in time. But, with cancer it is totally opposite. I see why they call it a fight for life. All the drugs they give you to destroy the cancer can really kill you. That's pretty mind blowing. You know (or Al, in this case) that you are going to be burned by radiation to the point of not being able to swallow. They also tell you that the chemo is like poison in your veins and it is made just for you and your type of cancer. They don't even mix the drugs until you get there. It's not like someone else can take them if you don't. And in Al's case, they were too afraid to give him such huge doses because of his blood disorders. So, they are spreading it out in smaller doses and waiting to see how he reacts. The doctors don't even know because every patient responds differently and every cancer reacts differently. Enough about that. It's all part of the emotional roller coaster. Al seemed to enjoy the weekend and that felt good. You could tell he was just happy not to be feeling lousy.

The first week of treatment is over. We saw the doctor today and he said the only way to determine which drug is making Al so sick is to stop one, and that's not an option. The urine test came back normal. Good news. Al decided to make tomorrow his last day of work. He said he is just too tired and can't concentrate. He is kind of upset about having to stop work so early because he had really hoped he would have the energy to continue. But, this is probably for the best. This way I can make sure he is eating and drinking enough and taking his medication. I told him we can go for walks and catch up on some of our recorded shows. He can put all of his effort into getting healthy again. We just plan on having a nice relaxing weekend.

Al tried to go back to work today, but only lasted about half a day. He is currently sleeping. He says he is freezing. He's got the rest of us sweating because he keeps turning up the heat. He said he is a little bit nauseous and just so tired. I called the nurse and she said to just let him sleep, but keep checking his temperature because the Ethyol may cause a fever. He can take Tylenol if it comes to that. I was able to get him to drink some Gatorade. It's pretty early into this for him to be feeling this bad. We saw the radiation oncologist today and she said the pain will come in about another week. She said they will give him some mouthwash to help numb some of the sores that will develop in his mouth. They will also give him pain medication when the time comes. He told her that water already tastes gross and he has a metallic taste in his mouth. She said that is caused by the chemo (Cisplatin). I feel so bad for him to be this miserable already. My stomach is in knots. At least the kids are playing nicely downstairs. They know Daddy came home early because he isn't feeling well, so they are trying to be considerate.

I just dropped Brooke off at school and poured myself another cup of coffee. She was so excited that today is pajama day. I can hear Al getting ready upstairs. He said he felt pretty queasy last night. He said he couldn't really concentrate and that his head was hurting. I told him not to push himself to stay up and get some rest. He seems to realize that he is going to have to listen to his body. He has been burping, belching and hiccupping for the past 2 days. The nurses said that all of the fluids are doing that to him. It's just lovely! He also needs to start eating smaller meals more frequently throughout the day. He said he is making an effort to take smaller bites and slow down. We are both just anticipating what it's going to be like when it starts to hurt to swallow. Meanwhile, he really wants to enjoy this time that he can taste his food. My sister is returning home today. Thank you Randi! Words cannot express our gratitude. And thank you Dave for loaning us your wife.

Al is currently at the treatment center with my sister. I think they are keeping him for about 3 hours for IV fluids. And radiation, of course. He was exhausted last night. He went for a good walk this morning and seemed to be feeling better. His neck isn't bothering him as much anymore. I keep checking to make sure he isn't running a fever. They said the Ethyol can cause a fever. It can also cause a rash, dehydration and nausea. However, it'll be worth it if it works and actually saves his salivary glands. He said his orange juice burned a little bit this morning. We were told that most things probably wouldn't hurt until 2 weeks into this. He has been rinsing his mouth with warm water, a teaspoon of baking soda and a pinch of salt. He wouldn't do that on his own, so I make sure to have it ready for him throughout the day. I'm also constantly pushing fluids on him. But, he is cooperating. He knows what he needs to do. He said he is practicing those swallow exercises too. Two more treatments and we'll be done with week 1.

Things went well today. My sister came in this morning. She and Rachel met us at the treatment center around 1:00. Rachel strolled right into the "infusion room" and gave Daddy a kiss. Then we left. They should be home soon. We spoke to the doctor this morning and he said Al can start chemo on Mondays as of next week. That will help with childcare. Also, that's his day off from work. And he would really like to work through this for as long as possible. The doctor also reiterated how important it is to practice those swallow exercises. And as with every visit, they reminded him to stay hydrated. He is forcing himself to drink lots of water so far. He said he felt fine when I left. We met up with some people from the chemo class. They greeted us with hugs. The only thing Al is complaining about is his neck. The doctor said it may have been aggravated from the surgery. He said a massage might help. I'm up for the task.

The first day of treatment is over. It went pretty well. Al removed the thick bandage they put over his port to find some blisters by the tape. Obviously, he is having some kind of allergic reaction. I had the nurses check it out today and they said to just leave it alone for now. The tape can be taken off in a couple of days. The Ethyol shot was given in his stomach. He said it was a little bit itchy tonight. He said the radiation part went well, but it was very loud. His neck is really bothering him. He took a pain pill when we got home and just dozed on the couch until I finally sent him up to bed around 6:00. I don't know if that pain pill made him this tired. It could be a combination of that and the other pills he took earlier today. He has to take an anti histamine along with anti nausea medication prior to the Ethyol shot. Plus, he said his neck bothered him all night and he couldn't sleep well. He is still eating well, so that is good. Thanks to Rachel's teachers, we had a wonderful dinner and a yummy desert. That is a big help to me since I would not have felt like cooking after a day like today. Actually, I couldn't have prepared a meal that good on my own anyway! The dentist called back and said they will call in a prescription for some fluoride treatment. It's a good thing I read other peoples' blogs to know enough to ask for it. I should get some sleep now too. Oh, I need to make sure Al puts the aloe vera gel and cream (RadiaPlex) on his neck again.

The big day is here. You'd think I'm the one going in for radiation since my stomach is in knots. Al is still sleeping peacefully. I'll hold off on my workout so that I don't wake him. I'm actually anxious to burn off some of this nervous energy. Al looked completely frightened last night. He didn't say much, but I could see it in his face. He said that the back of his neck and upper back are hurting. We both agreed it is probably tension from all of the stress. He poured himself his last glass of wine. No more drinking. No more smoking. Ever again. He said he is trying not to think about what's ahead. He said he isn't too worried about the chemo. It's the radiation that is freaking him out. He was told that it will feel like a really bad sunburn on the inside of his throat. His mouth will get raw and blistered and it will be difficult to swallow. We're both worried about how he will get in all the nutrition he needs. The doctors don't want to give him the feeding tube, even though other patients say it's best to get it before treatment starts, rather than when you are in the middle and already feeling lousy. I'm just hoping that Al will be stubborn enough to force himself to drink through the pain. The nurse said to make sure he gets at least 5 cans of ensure or boost daily if he just cannot eat. Meanwhile, he needs to eat as much as possible while he is still feeling okay. This is a time when that extra weight can really benefit him.

Today is Sunday. It all starts tomorrow. I'm restless, nervous, anxious, agitated and scared. Al is engrossed in the Discovery channel, watching something about penguins. I better get used to this channel. I talked to the girls today about what it means to be considerate. They made him some get well cards yesterday, so I think some of this is sinking in for them too. All they really know is that he had to have surgery to put something in his chest (port) that the doctors will use to give him medicine. I told them that I will be taking Daddy to the doctor every day for the next couple of months and some of the medicine will make him very sick. He may throw up and he will be very tired. His throat is going to hurt and he has to rest his voice. Al let them feel the bump on his neck and explained that the doctors are going to get rid of it. Brooke wanted to know how medicine can make you sick. Good question. I reminded her how the antibiotics she had to take for a recent ear infection upset her tummy, but it also made the infection go away. Rachel said this all means they can't jump on Daddy and get piggy back rides for a while. Other than that, they are excited that they will get to go home with friends when I can't pick them up. Also, they are looking forward to seeing their aunt next week. I am also happy that my big sister will be here for us, even if it is only for a day or two. The kids also know that we all will be washing our hands often. They also like using the "germ juice" or anti-bacterial gel.

Not much going on today. Al should be home from work soon. The girls and I stayed at home all day and enjoyed the rain. They were happy to watch a movie and eat popcorn. The hospital called to check on Al. The nurse seemed surprised that he didn't touch the pain medicine and went to work first thing this morning. He is tough, that's for sure. I didn't tell her that he insisted on driving yesterday even though they told him not to drive for a day! He made me take him back to the hospital to pick up his car. I'm pretty restless today as we get closer to his treatment starting. I've been looking for stuff to munch on all day. I could hardly eat at all after the initial diagnosis. Don't know what that's about. I'm so afraid I won't know what to do if he has a bad reaction to something. There are so many possible side effects to everything. I want to make sure he is comfortable throughout this process. I'm usually a pretty good nurse, but I've never had to deal with cancer.

Al's surgery went well this morning. His port is in place now. I guess that means he really does have cancer. His surgery started at 7:30 and we didn't get out of there until 10:00. He dozed on the couch until we had to leave for the afternoon appoinment. They do plan on giving him chemo weekly instead of the 3 sessions. They are also going to use the Ethyol (or Amifostine). They don't think it will interfere with his rare blood disorders. Oh, and he needs to bring in a urine sample on Monday. Something came back about his kidneys. Let's hope there isn't a problem.
It's been an emotional day. It's really sinking in for both of us. We're going to enjoy a nice dinner here shortly and try and have a good weekend. Monday is when treatment begins and he'll be getting chemo on Tuesdays.

It's 5:30am and I'm wide awake. Al should be getting up shortly because he needs to be at the hospital in an hour. He'll get the port put in this morning. I wish I could go with him, but I have to drop Brooke off at school. Rachel is coming with me to pick him up afterwards. We should be there right as he is finishing up. He went for the the pre-op yesterday, which included an EKG and blood work. They also charged him $720 for our portion. It's crazy. We are extremely grateful to have such great insurance, but it's still expensive. Last week's PET scan was a good $200. And every doctor's appointment is the $20 copay. What do people without insurance do? This doesn't make sense.
Valentine's Day was very sweet. I got flowers and a very touching card. The kids enjoyed their school parties.

We found out today why Al's blood work shows anemia. He has Hemoglobin C. It is a problem with hemoglobin, the part of red blood cells that carry oxygen. Very rare, but normally doesn't cause any problems. He also has G6PD, the most common human enzyme deficiency. Lucky Al! The doctor said to let the pediatrician know so that the kids can be tested. They said he will be have to be monitored closely for dehydration. They are considering doing the Cisplatin (chemo) weekly, instead of 3 sessions during his 7 weeks of radiation. They think he'll have less side effects and they will be able to monitor any reactions closer this way. It'll just be more time consuming for us because he'll have to be up there once a week for a good 6 hours, followed by 2 days of IV fluids for another 4 hours. He wants to work for as long as possible. They aren't 100% sure whether they will do it this way because they don't know if it is as effective as the 3 rounds of Cisplatin in larger doses. That's the standard treatment that has been studied. We'll find out the final plan on Friday. They also decided not to use the Ethyol (drug to protect the salivary glands) because of this condition. The doctor said it is too risky for something that may or may not work. Supposedly, it has a lot of negative side effects that many patients can't tolerate. Besides, they feel confident that 1 gland will be saved and about 60% of the other one. We are just anxious to get started. The doctor wants to start the chemo on Tuesday to fit his schedule. I might have to get our little one enrolled in something on Tuesdays and Thursdays (Mondays, Wednesdays & Fridays are already covered) because I can't bring her to the cancer treatment center twice a week to be with him for several hours. I'll see what they tell us on Friday. I made plans for a friend to pick up our 6 year old, but will have to take our 5 year old along. I don't think she'll freak out or anything. I'm just a little bit nervous about exposing them to all of this. But, that's their dad and they'll know something is going on soon enough.

Today was swallow therapy. They did some swallow test to see if everything is currently okay. Right now things look good. Then the speech therapist spent some time explaining various exercises that should be performed up to 3 times a day. It's a real work out. But, she stressed that it is so important to do it so that he won't lose the ability to swallow. I know it'll be hard to do this when he isn't feeling well. They showed him how to move his tongue around and how to lift his head to strengthen the throat muscles. It was pretty interesting. We should find out what's going on with his blood tomorrow. I'm anxious. He isn't totally over this cold yet either. It's a bit nerve wracking. The rest of us are healthy for now, but you never know with little kids in the house. I already stocked up on that anti bacterial gel and told the girls to keep remembering to wash their hands. That's about it for now.

There isn't much to add today. We're just anxious to get started with treatment. Tomorrow is swallow therapy. We'll see the medical oncologist on Wednesday to find out why the blood work showed anemia last week. That explains why he has been so tired and cold lately. It was hard to see him sleeping so much this weekend. He was also very irritable and snapped at me over some nonsense yesterday. It's understandable though, so I'm trying not to take it personally. I suspect it's only going to get worse. We're trying very hard to stay positive, but this whole thing is just so depressing.

It's after 6am, but I'm wide awake. Sleeping has been difficult. I did 2 loads of laundry at 2am the other night. I should use this time to mop the kitchen floor, but don't feel like it. I'm not sure why I decided to document this journey, but I do know that writing has always been therapeutic for me. And I think it could be helpful to someone else that might have to deal with this. I'm sure that Al will be supportive to others once he gets past this bumpy road. Or "inconvenience" as he puts it. We talked for hours last night. He tells me he plans to fight and survive this, but he isn't afraid of death. He also said that if he doesn't make it, he is sorry and to know that he didn't give up. I can't even entertain the thought that he might die. He talked about his childhood and said a lot of old memories have recently resurfaced.
People sometimes say that cancer turned out to be a blessing. We're not quite there yet, but it is a life altering experience. We are just getting started. It does put things into perspective though. I think we all tend to procrastinate with certain things because we take for granted that we'll have the time in the future. But, with or without cancer, nothing in life is guaranteed.
I keep playing back that visit to the ENT. We knew we were going to get the test results of the biopsy. We were both nervous, even though we never really discussed what the results might reveal. I had done my own Internet research, so I was already scared. I had actually read this exact thing because I had been looking up a possible diagnosis for one enlarged tonsil and a swollen lymph node on the same side. However, I kept telling myself that it was probably just some wicked infection. How do you prepare yourself for a cancer diagnosis? I'll never forget that day. I dropped off our 5 year old at preschool and met him at the doctor's office. We waited for a good 45 minutes for that appointment. I did pace in the waiting room. I told myself that it couldn't be bad news if they were making us wait that long. Al got into the exam chair and I stood up and leaned against the counter. I couldn't sit in the chair behind him. The doctor came in and first looked in his mouth. Then he said he wished he had good news. We both heard the word "cancer" loud and clear, but I had to have the nurse write down "squamous cell carcinoma" later that day for me when I picked up his CAT scan. The doctor did most of the talking. He did tell us that this isn't a death sentence. He said that he thought Al would do well considering he is young, strong and otherwise healthy. He also threw out some names of other facilities that deal with head and neck cancer. My head was spinning. After he finished talking, he asked us if we had any questions. That's when I just started crying. Al looked at me and said, "I'm sorry honey." I couldn't speak. We were escorted to the front to check out and go on with our day. Al went back to work. I couldn't get through to my mom, so I called my sister. My poor brother in law answered the phone to be the first one to hear this horrible news. That's if he could even understand me through all of the sobbing. It's weird, but I still went for my haircut and then picked up the kids from school. What are you gonna do?
It was 2 days later that we met with the oncologists at the local cancer treatment center. I was so scared to just enter that building. Yes, you see some sick people in there, but it's also a bit inspirational to see people bravely entering to get their treatment. Some older than Al, some younger. You can always identify the sick ones from their companions. They are often a grayish shade and look a bit weak. They still manage to smile at you as if to tell you it's going to be alright. You can also identify the newly diagnosed ones. Maybe my shaking and panicked look gave us away! The entire staff is so friendly and compassionate. Not like any other doctor's office. They must have some kind of training that goes far beyond medical training. Anyway, we met with a radiation oncologist and then with a medical oncologist. They were both very nice and encouraging. We really didn't have any questions for them until the following visit. Of course, I'm still jotting down questions for our next appointment. They did it make it very clear that this won't be easy. They told us that this particular type of cancer usually stays confined to the head and neck. It's also usually very receptive to treatment. However, treatment is very difficult on the patient because of the area that is being treated.
Al went for the PET scan last week and the doctors confirmed that the cancer is in the tonsil and lymph nodes. Luckily, it didn't show up anywhere else. He was fitted for the mask that will be used during radiation. They have to mark the areas to be radiated, while trying to spare the healthy parts. However, they warned us that healthy parts also get damaged in radiation. More blood was drawn. They are saying he is anemic and they need to find out what that is about before they begin treatment. We're going back on the 13th. He already saw the dentist and he won't need any work done before treatment begins. We are overloaded with information. There are prescriptions to fill. There seems to be a drug to counter act the side effects of every other drug. It is overwhelming. I'm just trying to stay organized.
Well, the kids are asking for waffles already. I need to get to the grocery store this morning. The refrigerator is empty. Guess I've had other stuff on my mind!

My husband was diagnosed with tonsil cancer on January 30th, 2008. He didn't have any symptoms. He went to the doctor on January 7th for routine blood work. The doctor asked him how long the knot on the side of his neck had been there. He hadn't even noticed it until that day. He was sent for a CAT scan that same day and then referred to an ENT. That doctor noticed an enlarged tonsil and did the biopsy.
We are now preparing for treatment to start on the February 18th. It will be radiation 5x weekly for 7 weeks, along with 3 rounds of chemotherapy - the first day of treatment, in the middle and at the end of the 7 weeks. We have been told it will be very, very difficult. The doctor said, "It's not a walk in the park." There have been so many appointments and procedures. The PET scan confirmed that this is stage 4 - T2N2M0. We never wanted to learn so much about cancer. We attended the chemotherapy class last week. Al was the class clown. His sense of humor can only help at a time like this. We have been told that swallowing may become difficult. He still needs to go to swallow therapy. Who knew? If he loses more than 2 lbs a week, they may need to insert a feeding tube.
We are hopeful. We have learned that this type of cancer rarely spreads and is among the most treatable. "Curable" is what the doctors are saying. Al is only 53 years old. Our kids (ages 5 & 6) don't know what's going on yet and we are trying to keep things as "normal" as possible around here. They will know something when he gets his port put in on February 15th. He is currently sick with a cold, so we are worried this may delay treatment. I'm tired and worried.