Today is Sunday and I am now three days past the last treatment I received. Not much has changed actually. My mouth feels pretty much the same as it has for a week or two now, and the mucus is still a real problem. The taste of sour milk is always with me because of the mucus. The rash on my face, chest and back seems the same too. I get tired very often throughout the day and I love to take naps. Naps are like a mini vacation from all of this.
I was able to mount and hang some new curtains Denise bought for the family room. I had some help from my son Grant too. They look pretty nice, but we’ll have to fill them in with some more panels for the proper look we’re both envisioning.
Also yesterday was the first time Grant was able to drive both he and Wyatt over to our house for the weekend. His mom had an older car they weren’t using much and have allowed him to use it get back and forth to Vacaville. Grant being able to drive now changes a lot of things. Last night Denise and Sarah went to a formal awards ceremony (where Sarah had won a very nice design award) and they asked Grant to be their driver to and from the event. How cool is that?
And since today is Sunday, we’ll be going to my parents house for dinner tonight. This will be the last time we do this for a while, since my parents are leaving back to Seattle for the summer around the 1st of April. I’m thankful they were able to change their plans and stay until my treatments were completed. That meant a lot to me.
I had my last radiation therapy today and I AM DONE! No more daily trips to the radiation center, and no more damage to my skin and mouth. I can start healing and ease back into to normal life. I’m so happy this part of the adventure is over. I looked at my treatment calendar every day, crossing off each day as it passed, and way back in February, it looked like such a long way off. As I’ve said before, I was worried about the condition I’d be in by now, but I’m simply thrilled I can still eat on my own, get around on my own and have little or no pain.
So my treatment consisted of 34 radiation zaps and 7 chemo infusions with Erbitux. And I’m done.
Dr. Jones saw me today and took another look in my mouth and said “well that’s responded very well.” He was quite happy to see the state of the tumor after all these doctors were finally done “throwing the book at me.”
The radiation technicians were so good to me all these weeks. Denise took some pictures of the last day, including a shot with my technicians. They gave me a nice certificate of completion, signed by everyone at the office too. Nice touch. I also got to take home my dreaded radiation mask. I’ll probably throw it on the fire in the next few days.
Thanks for all of your wonderful support, everyone! I’ve really appreciated all of the kind comments on Facebook, in my blog, phone calls, cards, home baked dinners and the taxi services to and from treatments. I’ve been blessed with wonderful friends and a great family. Thanks so much!
 The last zap! |
 With my Rad Techs |
 My mask & certificate |
Grant with his CDL
Grant took his driver’s test today and was issued his first driver’s license! Yippee! He’s had a permit for a while now and has been driving us around when possible, but this completes the cycle. I’m so proud of my boy. He did very well on the test and passed it the first time. I think I see a lot less of me driving to Winters in my future. 
Well today was my second to last radiation treatment, which means tomorrow is my last! I’m excited this treatment is finally coming to an end and I can start healing in earnest. My mouth is still pretty thrashed, but not much worse than it has been for weeks now. The skin around my neck is also raw and looks like alligator hide, but frequent moisturizing with lotions keeps me in good shape. It will all heal in time.
One problem I’m noticing recently is the build up of mucus in the back of my throat (mucositis). Clearing my throat can be tough, and the mucus frequently makes me gag. Especially when I’ve been sleeping or napping. I’ll wake up with a great deal of mucus and have to make dash to the bathroom so I can breath normally. UGH. The swish and swallow helps, but the mucus remains a real bummer at this point.
Well, tomorrow will be my last day of treatment and just about everybody who knows me, knows that Thursday is a happy day. Hopefully I can bring home my much hated radiation mask and put it into the fire, never to be seen or heard from again!
Not much has changed with my condition in the past week or so. Which is actually good news, since I was a bit worried my mouth would get to a point where eating might be a REAL challenge. So here’s where I’m at today.
I still have difficulty eating, but I’m able to swallow pretty well, and just have to plow through things like cream of wheat, jello, protein drinks and such. My mouth is pretty ragged and my tongue is particularly raw and very sensitive. My teeth seem like their doing ok, since I do the swish and swallow medication a few times a day to keep any problems from becoming problems. I don’t really take any pain medication because I really have no pain. I have discomfort most of the time, but not pain. The Erbitux rash is still with me, but pretty much just a red rash on my face, chest and back and not nearly as explosively pimply as it was weeks ago. My mouth is dry nearly all the time, especially when I wake up in the morning. The mucus in my mouth has begun to make me heave pretty badly if I don’t clear it out real quick in the mornings. Seems like a mental thing but I have a hard time controlling it and once the heaving starts it’s hard to stop it before my whole body is involved and hurting.
Well that was an uplifting bit of information wasn’t it? Sorry about that.
Overall, I think I’m doing surprisingly well for this late in the treatment. The ability to eat my own food is a huge mental “win” for me. I feel like I’ll be eating on my own the entire length of this process. I’m not nearly getting the recommended 2000 calories a day; probably closer to less than 1000 most days. I’ve lost nearly 20 pounds so far. Denise says I’m too skinny and is always encouraging me to eat more frequently, but I don’t feel skinny.
And finally the radiation burns to my neck are a bit more pronounced week to week. I keep trying to save my skin with various moisturizing lotions each day and for the most part they seem to help. Since the radiation is targeting my jawline down to my entire neck, I’ve lost a lot of beard and neck hair and don’t have to shave any longer. My beard is so thin, there is not much left of it. I can pull the hair out with little or effort at all. So each morning when I wake up, I find my own pillow has contributed to even more beard thinning. And for about the past week, my hairline on the back of my neck has risen quite a bit. If I had paid for this type of haircut, I would have asked for my money back! Well all of that will certainly grow back months from now, so I’m not worried about it. If those are the prices to pay for getting rid of this disease, then I’m all for it.
Denise and her cake
Today is Denise’s birthday. Yeah! Although the circumstances around here don’t really lend themselves to going out on the town for a wonderful birthday dinner, we will still try hard to give her a great birthday here at the house. Wyatt and I baked her a yummy double chocolate birthday cake and we’ll decorate it a bit later when everyone else arrives here. She also woke up to a piping hot cup of coffee and a homemade breakfast courtesy of yours truly. I have to admit though, while I was making her breakfast, she was making mine, the old tried and true cream of wheat. What a gal!
The boys and I worked hard over Sat and Sun getting the house cleaned up for the gathering tonight, and we’re ordering out from a local Thai food restaurant (one of her favorites), so there will be nearly nothing left to clean up when we dive into the aforementioned cake.
The story of how Denise and I met is well known to nearly all of our friends and family, but it still bears mentioning how much of a fairy tale the joining of our two families has been. We’ve been together now into our 5th year and I still fall head over heels in love with this woman all over again every day. She is an absolute joy to share my life with and having her with me on this new adventure (and caring for me in the way she does) has been nothing short of a miracle. Happy Birthday my love!
I had my morning radiation treatment today and also got to meet with Dr. Jones, who I haven’t seen in a while, since I’ve been meeting with Dr. Suplica each week. He hadn’t seen my Erbitux rash before, so he didn’t know how bad it had been weeks ago, but he still was excited to see the rash and again reminded me “the rash means it’s working, well.” He looked me over and peered into my mouth and said there was probably less than 10% of the tumor left based on the initial size he seen when he first saw me. I was quite happy to hear that. I’ve got about 2 weeks of treatment left, and he said overall, the pain in my mouth probably wouldn’t get too much worse. The week or two after the final treatment would be rough certainly, but the mouth pain has probably plateaued. This is amazing to me, since I can still swallow pretty easily, eat foods (albeit soft ones) and generally carry on normally throughout the day.
Funny that he asked what pain medication I was taking and I said, actually nothing really. He reminded me that he could prescribe some narcotics for the pain. Now, I’m not trying to pretend the pain is not there, or be a “tough guy” at all, but the fact is, I really have no real pain so far that I cannot bear. So at this point, I’ll stick to Advil or Aleve if I get a fever and that’s about it. He was happy to see that I could swallow on my own with no real issues, and was curious that I could still taste food. I had actually thought my taste would leave me weeks ago, but I definately still taste food. For now anyway.
Crossing off the days on my treatment calendar, I can see the end is nearing (Mar 26). Color me “happy.”
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.
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