Tuesday, November 4, 2008

Al finally got his port taken out yesterday. It would have been taken out sooner, but he had a lump on his chest that needed further investigation. He was referred to a surgeon that said it was basically a cyst, which she removed yesterday along with the port. His chest is wrapped in an ace bandage to prevent swelling and the bandage is itching him, but he isn't complaining of pain.
We have more good news. He found a new job and starts on Monday! It looks like 2009 will be much better.

Saturday, September 27, 2008

Al has been declared cancer free!!!!!!!!!!!!!!!!!!!!!!!
He feels and looks great. You would never guess what he has been through. We are having a little surprise party for him this afternoon. I've got some friends and neighbors coming over before he returns from work. I just made some last minute calls to try and put something together for us to celebrate.

Wednesday, August 27, 2008

The test results from the procedure the other day were good. The doctor said there was some erosion in the stomach, which might be the beginning of an ulcer. He gave him a prescription for that. That was good news. Meanwhile, Al had an interview yesterday and mine is today! The girls are so happy about school.

Monday, August 18, 2008

We saw the gastrointestinal doctor last week and he scheduled and upper and lower GI for Al. It'll be next week, which just happens to be the first day of school for the girls. We'll have to run to the hospital after we drop them off at school. The doctor said that Al shouldn't still be anemic since treatment ended over 4 months ago. They are looking to see if he has some kind of internal bleed that is causing the iron deficiency.
The job search is going well. The house has been up for sale for over a week now and we haven't had any showings.
The girls earned their yellow belts in karate. They are very excited.

Wednesday, August 6, 2008

In addition to all of the medical drama, Al is now looking for a new job. He just received notification that his department is closing down. He has just a few months to find something. Also, the nurse from the kidney disease office called to tell us that his creatinine levels are still rising and he will also have to see a Gastrointestinal doctor to determine why he is still anemic and has an iron deficiency. What next?

Friday, August 1, 2008

I forgot to write about the physical therapy Al has been getting for his swollen neck. He finished 5 treatments so far and will probably continue to go for at least 2more weeks. His therapist said she may only be able to see him once next week because 2 of her 3 children need to have their tonsils removed. Of course Al told her he wished he had gotten his removed a long time ago too! Anyway, she said his neck is starting to get softer, so that means it's getting ready to drain. I can't really tell yet. It still feels really hard to me and I don't think it looks that different yet either. But, it's probably still too early to tell.
I'm almost finished cleaning out the closet. Al said he wants to give away his big clothes because he doesn't plan on returning to that size again. I kept some of the in between sizes, just in case. The really big ones are out. It was weird folding those clothes. 50 lbs is a huge weight loss. He went down 2 pant sizes. He is eating more these days, but he is determined to stay slim. He wants to start exercising again too because he wants to build up some strength. He hurts himself easily these days. He was in excruciating pain last weekend and thinks it was sciatic nerve pain, which he hasn't complained about in over 5 years. He did used to have days where he couldn't get out of bed, but that was a long time ago. It was a good thing we still have so much pain medicine in the house! He was really hurting. He was actually going to get therapy for it, but then it just subsided the other day.
There is good news and bad news. I haven't actually wanted to write since we saw the kidney specialist. I don't know what we were expecting, but it seems worse than we had imagined. They stage the disease from 1-5, and the doctor feels that Al is stage 3. There will be some additional tests next week and a follow up appointment next month. Basically, all the doctor told us was that there isn't any treatment available, so the goal is to keep the disease from progressing. They don't know why he has this, but feels it has been going on for some time. On the way home, Al said he was never sick a day in his life before all of this.
The good news is that he is feeling better. He said he thinks his saliva glands are starting to work again. He has only been getting up maybe once a night for a sip of water over the past 2 weeks. Before then, is was several times a night.

Tuesday, July 22, 2008

Al just had his first visit with the therapist regarding his lymphadema. They want to treat him with message therapy over the next 3-4 weeks. He'll have to go 3 days a week and she advised him to take some pictures so that we can see the improvement. She explained that the radiation blocks some of drainage points. That will be great if they can help get rid of some of that swelling around his neck, especially since he is otherwise looking so slim!
We also saw the ENT doctor yesterday. Somehow we forgot that appointment last week. It was bound to happen with so many appointments. He said everything looks good and he will be now monitoring him every 2-3 months.
Al also saw the medical oncologist a few days ago and he doesn't have to go back for another 6 weeks. His test results show that he is still anemic, but the numbers did come up a little bit. He is still a good 4 points below what is considered normal. He is often cold, but his energy level is very good. They said his creatinine went up, which is not good for his kidneys. We're anxious to hear what the specialist says. That is the next appointment this month.
All and all, we are back into our old routine. It has been so nice to share meals together again. Al seems to be enjoying cooking on the grill. He is eating everything. His taste buds aren't completely back and his mouth and tongue still get irritated, but it's so much better.
I still have a hard time relaxing and often feel anxious and worried. We know that this could come back, so it's hard not to worry. I still have strange dreams. The other night, I dreamt that Al fell from a 2nd floor. I approached him while he was leaning on this railing and he said he was fine. Next thing, he fell and landed on his back. He said he only suffered minor injuries. It was weird. The other dream I have now had several times is of finding him smoking at some social event. I always grab the cigarette out of his hand, smash it and start screaming at everyone around us not to give him those because he just went through treatment for cancer.
Well, that is the latest update.

Friday, July 11, 2008

The appointment with the radiation oncologist went well. I would have liked to have been there, but didn't feel like dragging the kids along. Al said she didn't use the scope since the ENT will do that on Monday. She did look in his mouth and said everything looks good. She also said it looks like he is producing saliva already. She said that with most patients, the tongue depressor just sticks, but that wasn't the case with Al. She said that the Ethyol probably did work because most patients have success with just 3 weeks of it. Al got it for about 5 weeks. We'll know more in about 3 months. She also gave him a referral for the lymphadema since his case is pretty severe. She said they may be able to massage it or even drain it. We had previously been told that nothing can be done, so we'll have to check it out. And it is time to follow up with the dentist.
Well, time to get the kids ready for karate.

Thursday, July 10, 2008

Things are going pretty well around here. The withdrawal from the pain medicine lasted about 3 days, so it wasn't really too bad. He is now complaining of tingling and numbness on the bottom of his feet around his toes. He experienced that on the tips of his fingers during treatment, but says it is very mild now. It's his feet that are now really bothering him. This is a side effect of the Cisplatin (chemo). We need to find out if it will go away!
His energy level is amazing. He did yard work over the weekend. He also cooks on the grill most evenings that he is home. He has been working on the computer, so his concentration is also very good. He put up a ceiling fan and did a few projects around the house. He says he isn't 100% and still gets tired, but I'm very impressed.
The food part is still frustrating. He says his throat is fine, but his mouth gets irritated by certain foods. He also has to rinse his mouth often because things get stuck since he isn't producing saliva yet. We're anxious to see if the Ethyol worked to save his salivary glands. We need to give it a few more months. He also gets up throughout the night to sip water. He says it feels so dry he could choke. Things don't taste right yet either. He says it's weird because the first bite or so might be good, but then it's gone.
But, overall things are good and we are happy he is alive!

Monday, June 30, 2008

Al is definitely experiencing withdrawal symptoms. He was down to the lowest dose of fentanyl - 25 mg, but he has been on pain medicine for a good 4 months. We were both tired and attempted to go to bed early last night. He couldn't stop tossing and turning and said his legs were so restless. He was also freezing. I gave him a benadryl since I read that it can help. I think it did because he finally fell asleep and is now sleeping in late. He is working 5 hours today and then 10 hours for the next 3 days. The withdrawal should be over in 3-5 days based on what I've read. I'll probably call the doctor this morning to see what they say. He wanted to get off the pain medicine before returning to work. Now we think that would have been better.

Saturday, June 28, 2008

There isn't a lot to write about these days. Things are really getting back to "normal." If there is such a thing! Al is taking his last pain patch off tonight, so hopefully he won't experience any withdrawal symptoms or increased pain. He really seems like his old self these days. He is energetic and focused. He is eating more too. He just has problems with any kind of starchy foods. He will return to work full time next week. I hope that doesn't wear him out too much.

Friday, June 20, 2008

We saw the medical oncologist today and he said that the CAT scan looks good, but reminded us that it was done without contrast to protect Al's kidneys and is not as accurate. They will do a PET scan when he is 6 months out of treatment. That will be the big one, which will determine if they got all of the cancer. All we can do is wait now. As for Al's kidney's, his creatinine levels came back down to what they were prior to treatment. That is good news. I think anything over 1.2 was something to be concerned about, and Al is at 1.4. So it's not really that off. He did refer him to a kidney specialist. We'll see what comes of that. He is still anemic. The doctor said that 14 and up is normal. Al is only 9.3. They are going to check his thyroid too because the doctor said it felt a little bit big. We had been told prior to treatment that it would most likely get damaged from the radiation. That's easy to correct though. He would just have to take a pill, like I've been doing since I was 12 years old! Work has been going well this week. He does seem tired from it, but he isn't complaining. He said he'd like to go back to his regular schedule the first of next month. We will see the medical oncologist in a month. They won't be checking his blood every week anymore. Looks like we are slowly getting back into our old routine.

Wednesday, June 18, 2008

Al's first day back at work went well. I think he was happy to get out of this house finally! The girls ran and hugged him when he came home. It was as if they hadn't seen him in days. Rachel said we should celebrate his returning to work. Oh, we had to pull over to allow an ambulance to get by this morning. The girls wanted to know if that was our ambulance! That was interesting. Things are going well, but we are trying not to get too excited since there have been so many setbacks. Al decided to stay on the pain medicine for now. He may have 2 or 3 patches left, so he'll probably just finish those. He has been eating whatever I prepare for dinner, just very small portions. He does well with meat and veggies, but has a hard time getting down the carbs. He discovered yesterday that pickles taste good. His taste buds aren't 100% yet. He said apples just don't taste sweet. He was able to eat some pear and watermelon, but bananas and strawberries irritate his mouth. His energy level is really good, but he is still cold all of the time.

Monday, June 16, 2008

The ENT doctor said that the scan looks good. He couldn't see that huge mass anymore. He explained that the CAT scan was done without contrast because of Al's kidney problems, so it's not as accurate. He also didn't get a report from the radiologist. He used a scope to look down Al's throat and said it looked really good. He could see some ulcers in the throat, but that is normal. He is still healing. The swelling around his neck is lymphadema, which is common after radiation. He said it can be massaged, but nothing else can be done. It may or may not go away. Time will tell.
He is returning to work tomorrow. It's been almost 4 months! I'm nervous about letting him out of my sight, but it's time to let go. He seems ready. He is thinking about not putting on another pain patch tonight.

Thursday, June 12, 2008

Tomorrow is Al's CAT scan. I'm nervous because this will determine if they got all of the cancer. There should also be a PET scan scheduled for next month. I don't know if they will call us with the results or if we will have to wait until the following Friday to see the doctor. We are seeing the ENT on Monday too. This is all a bit confusing.
Al has been feeling fine since Saturday. He hasn't had any stomach problems. That was weird. Hopefully that won't happen again! He is returning to work next week. We have to figure out what he can take with him to eat. I suspect that his coworkers will offer to bring him junk because they all know how much he likes to eat and they will probably be shocked to see him 50 lbs thinner. I just hope he knows better than to attempt to eat things that could upset his stomach. He still has some discoloration around his neck and upper chest from the radiation. One area is kind of pink still. That's the part that burned and peeled. He also has some strange double chin that is really hard to the touch. The doctor said it is probably fluid buildup from the radiation and should get better in time. Oh, the girls teased him about his skinny legs the other day!
He is still on 25 mg of fentanyl, but will stop using the pain patches soon. I think he only has 2 left. He says his throat feels so much better, but the sides of his tongue still bother him. Certain foods irritate his mouth.
He isn't quite as obsessed about cooking after that emergency room visit. He is currently interested in photography. He took some pictures of the girls in their karate uniforms yesterday. We have really been enjoying watching them in class. They are having such a blast.

Sunday, June 8, 2008

We spent most of day in the emergency room yesterday. That was really unexpected. We saw the doctor on Friday and he didn't mention anything about Al's kidneys. Al told him he wanted to return to work on the 17th as scheduled, so he signed the release. Afterwards, we all went shopping and cooked a nice dinner. Actually, we have been eating together for the first time in months. Al has been doing most of the cooking lately and has even been staying up most of the day. So, yesterday morning he woke up feeling good and decided to mow the lawn. I made him a shake and walked away for a few minutes. When I returned, I noticed that his glass was empty and he was outside. I was alarmed to see that he gulped it down so quickly since he normally sips it slowly. It was also ice cold, which is how he prefers it. About 10 minutes later, he comes back inside complaining of stomach pain. He lied down on the living room floor and was yelling in pain. He was sweating profusely. I said I was going to call the doctor on call, but he said not to because they'd just tell us to go to the emergency room. The pain was coming in waves. I was going to call anyway, but before I had a chance, he started screaming in pain and said to call 911. While I was on the phone with the operator, he started throwing up. The ambulance and fire truck arrived within minutes. I remember the operator telling me to breathe. I had to run upstairs to get dressed while I was on the phone with her. After the paramedics arrived, I ran next door to see if the kids could stay with my neighbor. Luckily, she was able to take them. They were still in their pajamas. Al's blood pressure was low and his heart rate was elevated. They got him hooked up to an IV for fluids and took him to the hospital. Once we arrived, the pain had subsided. We were put in a room within the ER. Al dozed while receiving fluids. The doctor finally came in and did a quick exam and said he could go home. The nurse came in took his blood pressure, which was pretty high. As we were getting ready to check out and pay the $150 fee, the pain returned. Al plopped down in a wheelchair that was in the hallway. The nurse got him on a gurney and wheeled him to another room. The room we had just left was already taken! The gurney couldn't fit through the doorway, so the nurse left him in the hallway to find a different one. Al was able to get to the bathroom and started throwing up again. He was basically screaming in pain. His stomach was also empty. We got back to the room and Al lied down, but the pain was still excruciating. No one came in or did anything to help us! It was horrible. I was completely helpless. Luckily, the pain subsided and the doctor came back. He was kind of annoying because he kept saying, "Hey buddy. How you doing?" Anyway, Al had just about had enough of that place and said he felt well enough to go home. The doctor was okay with that, so we left. So far, so good. Our neighbor finished the yard for us. The kids were upset that they had to return home. Al was exhausted and went to sleep. He was afraid to eat, so he just sipped some water. He drank some of his shake very slowly this morning and went back upstairs to lie in the bed. The girls were invited to a birthday party today. My girlfriend is taking them with her 3 kids for me so that I can stay home with Al. I'm afraid to leave him alone. I'll follow up with his doctor on Monday. We think this happened because Al ate more solid food than usual the previous evening and drank that cold shake so quickly. He is just going to have to take it easy. He has been watching too much of the food network! I wanted to steam some green beans Friday with dinner, but he insisted on trying something different. He found some recipe that called for garlic, onions and bacon. I was also going to sauté some fish, but he decided to bake it with some seasoned crust that the girls just scraped off! Well, after yesterday, he agreed that we can go back to my bland cooking!

Monday, May 26, 2008

The recovery phase is going very slowly. Al still isn't able to eat much without it irritating his mouth and throat. He has lost a good 45 lbs so far. He can eat very small amounts of soft food. He still constantly watches the food network. He just decreased his pain medicine and says it feels like there is a knife stuck in his throat. We saw the doctor on Friday and he said that Al's throat still looks raw and inflamed. It'll just take time to heal. We didn't get the test results back yet, so we are waiting to see how his kidneys are doing. His energy level is increasing and he has even been able to mow the yard these past 2 weekends. He does have to take a break in between to avoid passing out. We also celebrated his birthday last week. He couldn't even have a piece of cake.

Wednesday, May 14, 2008

I'm kind of freaking out about the kidney disease discovery. However, I just hung up with the doctor and he said that 99% of cysts are not cancerous. He also said it looks like this is just a mild case. He said the kidney specialist (nephrologist) told him to have us wait a few weeks to be seen so that Al can get hydrated. The doctor said I should bring him in for fluids again this week. Al is currently sleeping and I'm not sure he will agree to that.
The anemia should correct itself in time, but it could take weeks or months. That will help with his lack of energy. The mucus problems have gotten much better, so he is sleeping better at night. The next big step will be to get off the pain medicine.
I guess I will just have to listen to him obsess about food. I know it is frustrating not being able to eat. He wants to order stuff off the Internet and I told him absolutely not!
The doctor called last night to give us the ultrasound test results. Apparently, Al has some underlying kidney disease, in addition to a cyst on his left kidney. I'm feeling pretty uneasy and nervous all over again. We don't know yet what this all means. He said we will need to see a kidney specialist once he is recovered. I think I'll call back today and see if we can just go ahead and be seen already. I don't really understand why he said to wait.
Al seems to be taking the news well. He is obsessing about purchasing a meat smoker. He brought the laptop upstairs and is researching some of the techniques he saw on the food network. He can't even eat solid food yet! He did manage to get down a couple of bites of fish last night. Oh, and he ate a piece of pear. But, it's such a chore to eat just a small amount of solid food. I'm researching kidney disease while he is researching meat smokers!

Sunday, May 11, 2008

Happy mother's day to me! I just got back from the park with the girls. They were so excited to give me some plants they made at school. They also made some pictures for me. It was very sweet. I'll take them to McDonalds later. The weather is beautiful today, so I kept them at the park for over 3 hours.
I tried to get Al to go for a walk with us this morning, but he said no. He also didn't want to come to the park. He just wants to stay in the bed and watch TV. Oh, well.
He is going for a sonogram of his kidneys tomorrow. The doctor wants to determine why his creatinine levels keep rising. That is an indication that the kidneys aren't working properly. They also took a urine sample. We should find out what's going on later in the week. It's likely that this is all just a side effect of the chemotherapy.

Friday, May 9, 2008

We saw the medical oncologist today and he was concerned that Al hardly gets out of the bed. He is still anemic, but his numbers went up since last week. Of course, that is only part of the reason he is so tired. He has been losing weight quickly and according to his blood work, he is still dehydrated. You can see that he is pale. Also, his facial hair is pretty much all gone due to the radiation, so he really just doesn't look like himself. The doctor told him that it may take another 3 months before he is ready to return to work. He encouraged Al to stay for fluids. I'm not with him now because I had to pick Rachel up from school early. Both girls have been dealing with a little stomach bug. At least it's the weekend! Al also decreased his pain medicine the other day, but will increase it again today because he was experiencing too much pain. He is so anxious to return to work, but just isn't ready. The doctor told him that he just needs to give his body time to heal.

Sunday, May 4, 2008

We had Brooke's birthday party yesterday. Al was in no condition to come, but he did. The girls had a blast. Al has been feeling very tired and queasy. He throws up about every other day. We see the radiation oncologist tomorrow and we'll see what she says. He is currently trying to eat some soup. He has been trying stuff, but hasn't had much luck. He had blood work done on Friday, but we didn't hear from the doctor, so that probably means everything is okay.

Sunday, April 27, 2008

The weekend has been pretty boring. Al hasn't come downstairs since he had to go to the doctor on Friday. He basically stays up in the bed all the time. He just dozes on and off. He went from 100 mg of Fentanyl to 50 mg on Thursday, so he is experiencing some more pain. He hasn't tried soup or anything for a while now. He wants to eat, but everything burns or irritates his mouth. At least he is drinking 2 shakes a day. It's really not enough, but his weight has stabilized. The doctor said his kidney function improved, but he is even more anemic now. If his numbers continue to drop, they will give him a blood transfusion. He has another case of thrush, so he is on antibiotics for that. He is just so tired that it's not likely he'll go back to work any time soon. The doctor said to give it a good 2 months or so. He was hoping to go back to work sooner, but he isn't even close to ready.

Monday, April 21, 2008

We had a pretty good weekend. Al is feeling much better. He is back to drinking shakes and plenty of water and Gatorade. He even managed to get down some soup. He is still pretty frustrated about not being able to eat real food yet. He did a little bit of yard work yesterday, but stopped and came inside when he got dizzy. He is going to have to start off slowly and listen to his body. It'll take a long time for him to get his energy back, but he is on the road to recovery. We saw the doctor on Friday and he got more fluids because his kidney function still wasn't right on Wednesday. They took blood again on Friday, but we haven't gotten those test results back yet. His mouth is still pretty beat up, but everything seems to be healing nicely. He hasn't needed any breakthrough pain medicine for several days now, so they'll probably lower the dosage of his pain patch in a week or so.

Wednesday, April 16, 2008

Things are better now that Al has gotten fluids for the past 3 days. He really hasn't been able to eat anything because everything burns. He has been sipping water though. He tried some ice cream today, but said it was too chalky tasting. He asked me to buy him some vitamin water to try. He is so frustrated that he can't eat. He thinks his mouth is healing and is hopeful that he'll be able to at least go back to the shakes soon. He needs some calories. He is still very tired. We should find out today if his kidneys are okay now.
The first grade had a little presentation last night. It was very cute and Brooke was really excited. She kept waving to me and Rachel while she was up on the stage. It was sad that Al couldn't be there.

Monday, April 14, 2008

Al passed out this morning. It was very scary. For some reason, he got up early and decided to take a shower. When he turned the water on, I told him to wait until he had something in his stomach since I knew he was dehydrated. I advised him to lie back down and wait for me, but do you think he listened? I ran downstairs to make him a shake and then I heard this loud crash. I ran upstairs to find him sitting on the bathroom floor falling over. I grabbed the phone to call for an ambulance, but he said to wait. He took a few sips of Gatorade and said he felt better. I yelled at him for attempting to get in the shower! He could have really hurt himself. He did hit his chin, but he says it's not too bad. Rachel wanted to know why Daddy couldn't walk. He insisted on getting that shower, so he sat through it while I waited, basically shaking. I managed to get him downstairs and to the treatment center where they pumped him with fluids and morphine. Thanks to friends, the girls were taken care of so that I could be with him all day. He isn't able to get a whole shake down anymore, so we will probably be going in for fluids until he can drink again. Hopefully, he'll feel better in a week. They told us he should start to feel better 2weeks after treatment ends.

Sunday, April 13, 2008

Al was doing pretty well up until yesterday. He is in a lot of pain and says that it is radiating all over his mouth and head. He couldn't even finish 1 shake yesterday. I want to take him in for fluids tomorrow. We were told that the 2 weeks following treatment would be the worst, so this was to be expected.

Tuesday, April 8, 2008

Al finished treatment today!!!!!!!!! What a long and grueling 7 weeks. He hasn't gotten out of the bed much over the past couple of weeks and I expect that he will be sleeping a lot for weeks to come. That's probably the best thing he can do to recover. He is scheduled to return to work at the end of May. We will see the medical oncologist on Friday and once a week for some time. We won't see the radiation oncologist for another month. Al's neck already looks much better. His skin should heal well. We asked for a pain patch, which they gave him yesterday. It was just getting too difficult to swallow so many pills. The patch lasts for 3 days. It's actually a little bit stronger too, so hopefully that will relieve more of his pain. They told us they will lower the dosage gradually to avoid withdrawal symptoms.
I don't know how we could have gotten through this without the support of our family, friends, teachers, cancer survivors, neighbors and caring staff at the treatment center. I also met some wonderful people on line that offered lots of support and advice. It was so helpful to talk to other people that have survived this ordeal. It really eased my anxiety to know what to expect. I was prepared for the worst and not surprised by any setbacks along the way.
Let the healing begin!

Sunday, April 6, 2008

It's Sunday now and I'm getting ready to take the girls to a birthday party. They really need to get out of this house and burn up some energy. Al has been dozing a lot this weekend. We will ask about a pain patch tomorrow because it is really hard for him to get all of these pills down. They tend to get stuck in his throat. He was nauseous yesterday afternoon, so it'll be good to get some fluids and anti nausea medication tomorrow. He got Morphine twice last week, which really helped with the pain. He even woke up in pain last night, so he had to take some Hydrocodone. He seems to be doing much better now that he is off the Ethyol. The doctors are pleased that he was able to tolerate it for so long. The yard is a mess, so hopefully he'll feel well enough to tend to that soon. We don't know if they plan to give him fluids on Tuesday, but we'll be done soon!

Friday, April 4, 2008

Al is currently getting chemo. He wasn't able to get it on Wednesday because his kidney function was still too low. He is also a little bit more anemic now. His knee is hurting and he hasn't done anything to injure it, so we don't know what that's about. They x-rayed it today and the doctor couldn't find anything. They also took blood to determine if he has gout. We'll find out on Monday. They told me to take him to the emergency room if he develops a fever. I sure hope that doesn't happen. He only has 2 treatments left. They will give him fluids on Monday since he won't be getting any over the weekend. I hope he has a decent weekend.

Monday, March 31, 2008

It was a pretty terrible weekend. Yesterday was the worst. He spent most of the day and night throwing up and gagging. What a great birthday for me! I was actually looking forward to getting to the center today. I told the nurse that he was in really bad shape and she had us see the doctor. She decided to give him a 2 day break from the radiation, so he'll need to make that up next week. She also gave him some anti nausea drugs and morphine through his IV today. He finally seemed to feel a little bit better. He has been upstairs in bed since we got home. The girls are watching a movie downstairs since it is raining outside. We didn't get any sleep last night, so I'm going to bed as soon as I put the girls to sleep.

Saturday, March 29, 2008

Yesterday completed week 6 of treatment. The doctor said his kidney levels are still a bit low and he is now slightly anemic. They will give him fluids on Monday and Tuesday and test his blood again to see if he can get chemo on Wednesday. He is very tired and feels miserable. He is on some very strong pain medicine now and is still in a lot of pain. The Oxycotin is still not alleviating all the pain, so he is using the Hydrocodone every 4 hours for breakthrough pain. His neck is raw on the outside as well, even though he has been applying the prescribed creams as directed. He looks like a burn victim. You can see this black line on the side of his face that goes down his past his collar. There’s this ring just above his chest – like he was in the sun with a round t-shirt on. They said this is all normal. He looks terrible and his eyes are all glossed over and rolling back in his head when he tries to keep them open. His mouth is so swollen that you can see if from the outside. The kids don’t seem the least bit phased! He isn’t sleeping well either because he has to keep getting up to spit. The mucus part is so bad and he tried using Mucinex, but it dried him out too much and made it too difficult to even spit, so he was choking more. You can hear the gurgling all the time, so he just keeps spitting it out so that he doesn’t choke on it. He refuses to spit in a cup, which is pretty gross. So instead, he gets up throughout the night to spit. He even gets up during treatment and has to drag his IV with him to the bathroom. Just one more week to go!

Wednesday, March 26, 2008

It's late now and everyone is asleep. Al did get chemo today, but they also pumped him with extra fluids. Thanks to my friends, the girls got rides home. Al had a strange reaction today. He was sweating profusely. The doctor said she doesn't know what is causing that. He was literally soaked when he woke up from a nap this afternoon. He is so miserable and it's really hard seeing him like this. I babble on about stuff to him, but you can just tell that he is totally out of it. I told the doctor that he is still in a lot of pain and that he is taking the hydrocodone every 4 hours now. And this is a double dose of what he was taking. In addition to that, he has been taking a double dose of the long acting pain medicine. She said he can triple that now. We also asked for the hydrocodone in pill form since the liquid stuff burns his throat. He is still drinking 3 shakes a day and taking a handful of pills every morning and evening. It does sometimes take him a good 2 hours to drink a shake. He is really fighting.

Monday, March 24, 2008

The first day of week 6 is over. We are counting down. He did seem to recover a little bit over the weekend, but the pain really kicked in yesterday. They said to double his pain medicine, so hopefully tomorrow will be better. He can only whisper now. His neck did peel in a few areas and is raw. We're seeing the doctor on Wednesday to see if he can get chemo. I hope his blood work comes back good. He started taking L-glutamine, which is supposed to help with the mucus. We checked with the doctor first and were told it might help. It can't hurt. The nurses even tried to cheer him up today. You can just look at him and see how miserable he is. One of the nurses told him that this is one of the worst cancer treatments to go through, but at least this cancer is curable.

Friday, March 21, 2008

We just got home from the treatment center. It’s almost 5:00, so it was a very long day. The doctors sure weren’t kidding when they said things were about to get tough. Al’s kidney levels were low, so the doctor gave him fluids today. He doesn’t want to give him chemo on Monday either. He is to get more fluids on Monday and Tuesday and chemo on Wednesday if his blood work looks better. His magnesium is also low. I thought he was taking a supplement because I went out and bought some. However, when I opened up his pill box to add an extra one, I saw that there weren’t any in there. That means I forgot to give them those pills all week. Oops! The doctor was also concerned about his 6 lb weight loss. He is eating, but he hasn’t been able to keep much down these past 2 days. He has been nauseous, but he threw up mostly because he was gagging so much on his own spit. The doctor wasn’t too concerned about him spitting up blood though, which is because his throat is so raw. The mucus in his mouth is the most unbearable thing for him right now. The doctor offered him some kind of suction device, but he isn’t interested. He can’t even tolerate soup anymore, so it’s just Scandishakes. He is forcing himself to drink 3 of those a day, so that’s a good 1800 calories. He really needs to try and drink 4 shakes, but I don’t know if he can do it. The doctor said he will be forced to put in a feeding tube if he continues to lose weight at this rate. Al was even reluctant to get fluids today, but the doctor said he could end up in the hospital if he doesn’t. He didn’t argue with that. It was a pretty depressing day. Al can hardly talk and says he feels terrible. So terrible that he doesn’t know how he is going to make it through the next 2 weeks. I really hope he feels better tomorrow. He has been feeling well on the weekends so far, so this little break from treatment should help. His neck is completely black now from the radiation. He has been applying the creams, so hopefully it won’t peel.

Wednesday, March 19, 2008

Al is upstairs sleeping now. He is usually pretty beat by the middle of the week. He had a hard time getting up this morning too. The doctor said his throat looks raw and she was concerned that he was in too much pain. He assured her that the pain medication was making things tolerable. She told him to come in for fluids if he isn't able to eat enough. I don't think he will take her up on that. We just want to get this over with, but the time isn't passing quickly enough. I have been having the hardest time sleeping. It's hard to believe that I'm functioning on such little sleep. I have my own doctor's appointment on Monday and am already worried about leaving him alone for any length of time at the treatment center. I know he'll be okay without me for a few hours. The kids are also coming home Monday afternoon. I miss them.

Monday, March 17, 2008

The weekend was actually pretty good. We played pool on Saturday and also went for a long walk. We watched some silly movies as well. Al felt well enough to mow the backyard yesterday. He started sleeping a little bit elevated and that seems to be helping a lot. I don't know why I am having such a hard time sleeping at night. It's so frustrating. I'm tired, but toss and turn all night. Al's voice is very hoarse right now and his throat is really bothering him. He took some hydrocodone last night, which they told him to use for "breakthrough" pain. I have to keep telling him to take what they give him. He just hates taking all of this medication. The kids are having fun with their aunt and uncle. We talk to them several times a day.

Friday, March 14, 2008

Today's appointment went well. They made some new marks on his radiation mask. They will be radiating a smaller area now that the tumor has shrunk. Al is currently sleeping. He is pretty miserable. The doctor said the tough part starts now. He gave him an antibiotic since he has thrush in his mouth. It's a common yeast infection that we knew he might get. They are showing an 8 lb weight loss, but our scale shows almost 15 lbs. We didn't realize he had lost that much. It's very quiet in the house without the girls. I'm tired, but also pretty restless.

Thursday, March 13, 2008

We are now halfway through treatment. The doctor examined him yesterday and couldn't see or feel anything anymore. Great news! He is very tired and his mouth is raw, but he isn't really complaining too much. His biggest complaint is that he can't taste food, which makes it even more difficult to eat. He was given Oxycodone to take twice a day. It's longer acting than the Hydrocodone. He started using the magic mouthwash prior to eating. He is still maintaining his weight. Brooke's surgery went very well the other day. She didn't need any pain medicine and is eating normally. Amazing. My sister took the girls to her house and will keep them until next Sunday. I hope they don't drive her crazy! But, I am so glad for the break and I know they will have a good time.

Monday, March 10, 2008

Today started the 4th week of treatment. The weekend was okay. Al is feeling pretty miserable. He is getting some relief from the pain medicine, but I think they’ll give him some stronger stuff soon. He is starting to gag on his own saliva and gets up often to spit. We are just ready for this to be over!

Thursday, March 6, 2008

It was another rough night. The pain is here now. To add to that, the girls were up at 3:00 in the morning giggling and playing. My cold was really bad yesterday and I had been taking some over the counter anti histamine that wasn't doing much. Then I remembered that I had some good prescription stuff, so I took one of those last night. However, they make you really tired. So, it was pretty disturbing to have to get up and deal with the kids. Al even got up to help. Needless to say, I had to literally drag Brooke out of bed for school this morning.
We saw the radiation oncologist yesterday and she prescribed some "magic mouthwash." He is supposed to gargle with it and then swallow it to coat his throat. After about 10 minutes, he should be able to swallow something. So, he'll use that before he eats and at bedtime. He was also given some liquid Hydrocodone to use every 4-6 hours for the pain. She said to see how this goes and if necessary, they will add some stronger stuff as time goes on. I think we are both getting nervous. They told us that the pain will hit by the 3rd week, so we were warned. But, you still kind of hope that you'll be the exception! Again, the doctor said that the tumor is shrinking. When Al went to the restroom, the doctor told me that he is doing a really good job. Then she corrected herself and said, "Both of you." Thank you! I know that he is the one that has to go through this, but I totally feel like I'm right there with him in it. I hope he does too. I always tell him about everyone that asks about him and let him know that he has a whole bunch of people pulling for him. I imagine it must be a lonely and scary thing for him at times.

Wednesday, March 5, 2008

I just dropped Brooke off at school and Rachel is sitting on the couch watching cartoons. I am too sick and tired to exercise this morning. I hate missing a workout, but my body needs to rest. Al had a rough night. After being pumped with liquids, he kept burping and belching and getting up to use the bathroom. He said his throat was killing him. He also did a lot of spitting. These treatments cause some thick mucus to build up in his mouth. It's pretty gross. We did set up the humidifier yesterday, so hopefully that will give him some relief. I'm getting nervous because we both know it is only going to get worse.
The treatment center was packed yesterday. We sat next to a guy from our chemo class that has esophageal cancer. He is getting Cisplatin too. He was very positive and funny. It was good to have someone to chat with during that long day. The guys talked sports and cancer of course. This one guy came in and announced that he wasn't taking his radiation. The nurses tried to joke and say it wasn't optional, but he was not in a very good mood. I heard the nurses talking after he left and they said he also refused his fluids and said he just wanted to go home. They said he only had 5 treatments left. That was kind of scary because I'm sure it does get really difficult as time goes on. I wonder how many patients just refuse to continue their treatment.
The center isn't as depressing as one would imagine. The nurses joke around and are always upbeat. There is always food available. Survivors come back to volunteer. You see people of all ages. And some don't even look sick. Cancer patients have got to be some of the bravest people.

Tuesday, March 4, 2008

These past 2 days have been very long. The doctor increased his fluids, so he had to be there all day today and yesterday. He seems to be feeling okay so far. He isn't losing weight, so that's good. But, he is having some discomfort, so soft foods are best for him now. I managed to get a nasty cold, so that certainly doesn't help our situation. I'm too tired to write more now.

Sunday, March 2, 2008

Al was able to stay up the whole day yesterday. We even went for a short walk. We both were tired by the evening though. I was really surprised that he didn't need a nap yesterday. I could have used one myself! We were able to catch up on some recorded shows. I think we watched 4 episodes of American Idol. Eating is becoming more difficult for him. He says his tongue feels broken and it feels like razor blades in his throat. He says not being able to taste things is so frustrating. He can still smell stuff, but the taste buds are all messed up. He said that some sweet things taste bitter. I keep reminding him that food is for nutrition now and the doctors keep reminding him to get in enough calories. They said ice cream is great because it is loaded with calories. I made him a shake with some carnation, whole milk, a scoop of ice cream and 2 big tablespoons of peanut butter. He actually enjoyed it. So did the girls! We've seen a more sensitive side to Brooke lately. She will often go cuddle with Daddy and rub his head. Rachel doesn't really seem to get it just yet. She still keeps climbing on him and it makes me really nervous because he allows it!

Saturday, March 1, 2008

2 weeks down. The weekend is here now and we can relax a little bit. Hopefully Al will get a little more energy back these next 2 days. He has been getting in the bed right after treatments and only getting up for short periods to eat something. He isn't always in a deep sleep, but says he is just too tired to do anything. I'm going to try and get him to go for a walk today. We saw the medical oncologist yesterday and he felt Al's neck and said the tumor is shrinking! He recommended a humidifier in the bedroom to help with the dryness in Al's throat. He said it was normal that Al got a nosebleed and spit up blood the other day. Yuck!
Brooke's teacher cooked for us the other day, so I haven't had to prepare many meals. That has been a huge help to the family. I used to talk to Al in the mornings about what to take out to defrost for dinner. Now he doesn't even want to talk about food. He says everything tastes terrible, especially water. He said the only thing that still tastes okay is chicken. He isn't in any pain yet, but says that eating has become such a chore. I ordered him some Scandishakes that are 600 calories each. Right now it is all about the calories. The doctors keep telling him to eat as much as he can because it's just a matter of time before he won't feel like eating anything.

Thursday, February 28, 2008

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.

Tuesday, February 26, 2008

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.

Sunday, February 24, 2008

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.

Friday, February 22, 2008

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.

Thursday, February 21, 2008

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.

Wednesday, February 20, 2008

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.

Tuesday, February 19, 2008

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.

Monday, February 18, 2008

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.

Sunday, February 17, 2008

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.

Saturday, February 16, 2008

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.

Friday, February 15, 2008

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.

Wednesday, February 13, 2008

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.

Tuesday, February 12, 2008

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.

Monday, February 11, 2008

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.

Sunday, February 10, 2008

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!

Saturday, February 9, 2008

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.