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.
Elizabeth and Rex
For weeks now, Elizabeth has been preparing for a presentation on her Blue Dutch bunny rabbit for her 4-H presentation day. Well, on Saturday it all came due when she made her presentation, along with a very nicely put together poster board and the accompaniment of her rabbit, Rex. The name Rex is actually another breed of rabbit, one that Elizabeth will be purchasing soon when she’s able to sell Rex at the upcoming annual Dixon Mayfair. However, Elizabeth’s presentation was about her current Blue Dutch breed rabbit.
Elizabeth did extremely well! She won a Blue Seal and her first Gold Pin for her 4-H hat.
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.
Elizabeth’s 6th grade excursion to Science Camp in Aptos, Ca started today. Denise and Elizabeth headed over to Foxboro Elementary at 6:30am, along with nearly all of the other 6th graders. Science Camp takes place this week from Tuesday through Friday when Elizabeth returns home. She’s been so excited about this trip for days now, and will be having a blast with her friends from school. Along with many other parents, Denise watched as Elizabeth loaded into the bus and drove away into the rainy morning. Although we can’t wait to have her back, we’re sure she’ll have a wonderful time again this year.
 The Science Camp Crew |
 Elizabeth & Kristina |
 Off into the rain |
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.
I had my first radiation today. Actually it was a day where I had my chemo in the morning and then the radiation treatment in the afternoon. Worried as I was about the effects of the chemo later in the day (like last week), this time there was no sickness after receiving the morning infusion. The nurse even found my vein on the first try! Brought a book along (The Story of Edgar Sawtelle), but after the Benedryl went in, it was suddenly nap time, so I didn’t get much reading in.
Later at 2:30, Denise and I went over to the Solano Radiation Center in Vacaville and met my parents there for the first radiation treatment. All the preparations had already been made, including my custom fitted radiation mask. I was brought into a different room this time (and one I’ll become very familiar with), where a very large machine loomed over a gurney type bed on tracks. They got me positioned correctly with the teeth and tongue guards and my mask pulled down tight and then for the next 20 minutes or so, I watched as this huge metal gantry moved slowly around my head. It was actually fairly uneventful as I felt absolutely nothing during the treatment. So this will be my daily ritual for the next six weeks, except for the weekends and holidays. Easy enough now, but it will get to the point soon where I lose sense of taste, develop heavy soreness in my mouth and some other temporary side effects.
For now, I feel great each day and often even forget I have this cancer in my mouth. No real pain anymore, so it’s easy to forget. Although the chemo is starting to make my face break out with acne. UGH.
Slumdog Millionaire
Denise and I had a kid-less night last evening. These come along every week or so, because the girls are with their father and my boys are with their mother. These nights, it seems wrong to stay home and do nothing, so Denise and I decided to go have a nice dinner and see a movie. Call it a Date Night.
We went to see Slumdog Millionaire at the Brendan Theaters here in Vacaville. I knew it was going to be a bit rough through most of the movie, since I had done a little reading about it earlier. Yes, it was hard to watch at times, especially for Denise, since it depicts quite vividly, the horrible reality of the slum conditions in Mumbai, India. It was a good story to see on the screen and we both enjoyed it overall. Glimpses of life lived in conditions such as those really gives you a sense of how lucky we are to have grown up here in the U.S. with a lifetime of happy and safe possibilities.
From Denise and I: 2 Thumbs Up
