Call me as “sharp as a basketball”, but I think I see a trend here. For the last week or so, I seem to have good energy most of the day, but mysteriously around 4pm to 5pm, I seem to run out of gas and require a nap. And when I take that nap, frequently I get the chills for the first hour or so. It’s almost like my body can function just fine all morning into the afternoon, but after that I get the not-so-subtle reminder to “lay down you big dummy!” It happened again yesterday, but I also developed a low grade fever which made me feel even more pathetic. But I woke up this morning feeling just fine. So it seems my body clock is geared these days for just enough energy to get me to the late afternoon. Weird.
Another revelation I stumbled upon was related to eating applesauce. It seems that everytime I eat applesauce, my mouth feels like it’s on fire. What could possibly be in applesauce?! Well, nearly all store bought applesauce contains ascorbic acid (aka vitamin c). Bummer.
Overall, I’m feeling pretty good day to day, with energy as mentioned above. My mouth is generally in better shape through the early part of the day, which allows me to eat scrambled eggs, cream of wheat, jello and other soft foods. But I’ve also noticed that as the day progresses, my mouth seems to get more tender and it’s harder to talk, so that by the time I’m heading for bed, I’ve had enough. My radiation burns on my neck have gotten worse (as expected). Surprisingly they don’t really hurt, but itch like crazy.
Boy I sure do look forward to the weekends. The kids are all here, which means the whole family is here. And I love when they ask me what they can do to help around the house. And probably the best part these days, is I can look forward to no treatments for 2 whole days. I’ll probably take it pretty easy this weekend (what?!) and do some cleaning here and there around the house, play my guitar when the mood strikes and try not to get real hungry. After picking Wyatt up from his piano lesson this morning, he picked up some doughnuts to surprise the other kids with when we got home. Dang, they smelled so good and I couldn’t have even one of them! What I would do for a big slice of pizza or a cheeseburger right now.
Last night was pretty tough as far as eating goes. I was only able to get some apple sauce down, and it felt like molten lava in my mouth. This morning things seem a bit easier, so I made some cream of wheat and was able to make my way through it pretty well. I’ll drink an Ensure or a protein shake later on.
This week’s treatment was definately tougher than all others so far. My mouth is my main problem, but my lips are breaking up to (from the Erbitux) and that is affecting my speech. I’m using a lip ointment called Aquaphor that keeps them under control though. I really have no pain anywhere other than inside my mouth and lips at this point. And the daily skin treatments from Denise seem to be helping to keep the radiation burns from ruining my skin. And finally I’m really making an effort each day to take care of my teeth. My gums are thrashed, and since I don’t have a lot of bacteria fighting saliva to work with, it’s important to do a lot of mouth washing with Biotine and brushing each day.
It’s becoming very hard to eat food, especially food that is not in a near liquid form or extremely soft. My mouth is causing me a great deal of pain each day. It seems much worse in the morning or after a nap when I haven’t been talking or moving my mouth for a while. I’ve been taking the Aleve to combat the pain and the swish and swallow so I can eat when I can. I was able to eat some scrambled eggs though this morning and tonight, which was a bit surprising. I seem to have some skin burns around my neck too and lips, which I’m sure will get more pronounced as we go along. I feel very run down and fatigued most of the time. I’m doing my best to take care of my skin with lotions and moisture balms from Denise’s collection and I’m able to sleep very well. I’m still able to work pretty well from home, since it involves generally nothing more than typing and participating in phone conferences.
Tomorrow is a chemo and radiation day. Not looking forward to that at all.
I really look forward to the weekends, because I can relax without having take any treatments. This weekend has been quite relaxing and I’ve got a lot of napping in because I feel a bit run down most of the time. The soreness in my mouth has become more pronounced and so eating nearly anything is a challenge. I forced myself to eat some cereal for breakfast yesterday and it felt like I was eating little razor blades. I won’t try that again. We had a very nice dinner at my mom’s house with Sarah and Owen last night. My mom is wonderful and made the food very soft, so after I used the swish and swallow medication, I was able to make it through all of my dinner pretty well. She also made a yummy key lime pie that was very easy to eat! After dinner we all played the game Taboo! for hours and had a blast.
So February is behind me now and only the month of March left for treatments. I’m excited about that and also a bit worried, since I have a greater quantity of treatments in front of me than behind me. Which means this month and next will truly be a challenge for eating and keeping my weight up. The facial, chest and lower back rash are still with me, but seem less “angry” these days. Probably due to the steroid cream and the other skin treatments I’ve been receiving from Denise. Still don’t feel like going out in public though.
Spent the whole weekend with my sons here at the house. Another reason I always look forward to the weekends. They are both very helpful around the house and Wyatt even mowed the front yard for me. Both are getting so big and tall. It won’t be long before both of them are taller than me.
I’ve had radiation each day, and since today is Friday, I will have it twice. I’ll go back at 1:30pm for the second one. I also had my fourth chemo treatment yesterday, along with the radiation. Thursdays and Fridays are always a little tough, since I’m receiving two treatments each of those days. After yesterday’s chemo infusion, I felt a little run down for the rest of the afternoon into the evening, but overall I still feel pretty good.
The facial rash has stabilized a bit too. Probably due to a new steroid cream (Triamcinolone) I’ve been prescribed by Dr. Vikstrom. I’ve been applying it to my face and it seems to help dry things up a bit. So far the rash is pretty much all over my face and scalp, neck, chest, upper and lower back. But nowhere else! The itchiness has become a real problem too and I’ve been scratching my face and scalp at night while I sleep a bit too much. I’ve got Benedryl for that now too. Denise also had the great idea to take an epsom salt bath the other night and what a wonderful event that was! My skin felt great for hours after that.
I’ve also noticed a more pronounced dry and generally raw mouth over the past couple of days. I’m really having to keep water close at hand and frequent mouthwashing with Biotine. It’s clearly becoming difficult to eat things that aren’t soft. So no more potato chips or crunchy breads. Bummer!
Today at the morning radiation I was also given a prescription for a “swish & swallow” concoction of various medications that will temporarily ease the pain in my mouth when eating. I’m going to try and plow through this treatment and recovery process while still eating, so this will hopefully help. I’ve also tried to keep my daily caloric intake up a bit higher in anticipation of a dramatic drop in the next few weeks and beyond.
Well, I think I’m way overdue to say thanks to all the wonderful friends and family I have. The flood of prayers, happy thoughts, cards, ecards and homemade dinners for my family have been truly amazing. It seems that every day I get wonderful uplifting comments, cards and even 1, 2 and 3 course homemade dinners from friends that really make things easier on us here at home and certainly for Denise too. Even though I’m not in a condition at present to say thanks face to face, I want you all to know that all of this is GREATLY appreciated and has really made an impression on my kids. Thanks so much! We have been blessed with a wonderful family and equally wonderful friends.
This weekend was pretty much a stay home weekend with the near non-stop rain and this rash on my face. It’s very uncomfortable and itchy and I’ve asked my chemo Dr. about anything further I can take or use topically to reduce the rash or even the tightness and dull pain. The Mary Kay skin treatment regimes from Denise have been helpful in keeping my skin from drying out too much, but I’ve got to learn to stay away from mirrors. They make me feel like I’m looking at someone else who I hardly recognize.
I had two radiation zaps on Friday and another this morning. At this point my mouth is starting to get a little dry and eating things like bread can sometimes be a challenge. I’ve been using the Biotine mouthwash and dry mouth toothpaste with flouride several times a day and that seems to help. But you know what? Other than this rash, I still feel great! I have lots of energy, much like a dog who needs to get out and run around after being inside too much. I play my new guitar many times each day as a creative release and have been working on some new original songs and chord arrangements. And during the week, I’m able to work here at home and be quite productive. My radiation appointments have been changed to 8:30am each day, so I’m able to get that 20 min treatment out of the way early and get back to a full day’s work.
And finally, (and probably most importantly) I have noticed the tumor is indeed getting smaller. I have no problems breathing anymore and sometimes even forget there is a tumor in my mouth. Definitely good news.
ARGGGHHHH! This acne rash is out of control! My face and chest are nearly completely covered. And it hurts to boot. After some research I’ve done online, I believe my rash is a bit worse than expected, but at least I don’t have any other side effects, yet. I actually feel great, very healthy and able to work a full day. But I look for reasons not to leave the house because my face is one big pimply itchy mess.
Yesterday during my 3rd Erbitux infusion, the nurses were excited to see I had the “rash” because it supposedly means it’s WORKING! But later in the treatment, they all had that look of concern as they cautioned me that if it got any worse they might have to cut back on the chemo a bit.
To be honest, I’ve been a miserable cancer fighter for the past few days. Seeing myself in the mirror is just depressing as hell. Seems like everytime I think “this is as bad as it will get”, it gets worse.
I had another radiation zap today. No real issues, other than the pain in my face because of this out-of-control acne rash. I also met with the radiation oncologist, Dr. Suplica (Dr. Jones‘ associate) about how things are going. We talked about a mouthwash he would recommend later when I had real sores in my mouth. We also talked about the need to continue to keep my caloric intact up through this treatment. Lots of calories and protein should keep me from losing lots of weight when things get tougher in a week or two. Denise was able to take a couple of photos of me on the radiation table too.
 Before the mask |
 Mask in place |
 Ready for the ZAP! |
It seems like the rain has rarely stopped over this past weekend, into today. And this is just fine, since we we’ve needed the rain pretty badly around here with the dry Winter so far.
Had my third radiation today, and only have 32 more zaps! Following that, we drove to Fairfield and had a check in with my chemo Dr. Vikstrom. The Cetuximab has really given me a bad acne rash on my face, chest and back and Dr. Vikstrom told me there was no scientific proof, but it seemed that when patients had bad acne, it meant the chemo was working very well. I’ll take that little bit of good news, because at this point, I really have no desire to go outside in public looking like I’ve been shot in the face with bird shot. He gave me an antibiotic called doxycycline that can provide a little relief for the acne too, since it will probably be with me until treatment ends. And this looks like it will be in the third week of March.
So other than the itchy, broken out face and chest, I still feel great and even went to band practice tonight.
Today was another great day, health-wise. I feel very healthy, strong and alert, but the acne on my face is getting somewhat worse. Denise is going to start me with a skin care regimen to help with the side effects of the chemo. I went for my second radiation today. It went just a bit quicker this time and we worked out our long term schedule on the calender.
I also had a dentist appointment today, to establish a baseline for my teeth as we move through this treatment. I got some great advice for mouthwash and fluoride treatments. I’ll need to really pay attention to my teeth during and after this treatment, including remembering to floss and do a fluoride treatment every day!
Picked a new Fender Stratocaster today too! I’ve got too many guitars already, so I’ll be selling two other guitars to make room for this new beauty.
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