Hey, I’m feeling pretty good about the healing now. The past three days I’ve felt much better overall, since I have more energy and I’m tempted to eat something other than soups and drinks. My face is clearing up slowly, but enough for me to have confidence to go out in public and do some shopping at a nearby hardware store with my son Grant on Sunday. I’ve got to protect my neck from the sun, so I’ll either wear my nifty new sun hat sent to me by my wonderful mom last week (happy birthday!), or simply avoid the sun as much as possible while I’m out and about. Getting out on my own to take care of my own errands felt great too.
Then we had our weekly Sunday night dinner at my sister Sarah’s house and I felt brave enough to try eating a small (think quarter sized) piece of bread. Yeah, I know. Amazing. But if I just take a drink before I eat it, I can do it! Yippee for small victories. And as if that wasn’t enough, my lovely Denise made me some scrambled eggs today and they were so good! I just have to be very gentle when eating them, since my mouth is still quite tender. But to me this is great progress.
I’m still having issues with the mucus build up while I sleep or throughout the day. Just the thought of it makes me want to gag, which I still frequently do each morning when I wake up unfortunately. However with the progress I feel I’ve made over the last three days, I’m quite happy that the healing has really started in earnest.
Weight when I started: 225 lbs.
Weight today: 195 lbs (amazingly, my clothes still fit)
It’s been a while since I posted and overall things are getting better. Slowly better, but any progress is still progress. The skin on my neck has dramatically improved and feels almost supple these days. It’s still reddish with some minor scarring, but that will all fade over time. My face is getting better every day. It’s still red and patchy but I can see small improvements each day. I might actually start going out in public if the mood strikes me. (Wow, a home body no more!) These days, getting out of the house is something to look forward to. I spend so much time here each day, I’m starting to feel like a crazy hermit.
My mouth hasn’t changed much at all and that’s my biggest complaint currently. I’m still stuck with my daily diet of Ensure and protein drinks, jello and soups. I was beside myself with envy over Easter with all that great chocolate, candy and jelly beans around; none of which I could even begin to put in my mouth. Even if I could eat it, it wouldn’t taste any good. Rats.
So yesterday I had a checkup appointment with Dr. Vikstrom at Northbay. He was delighted to see my skin improving and that I was there by myself! Hey, I’m slowly re-establishing my ability to get around on my own. Anyway, all my vitals were good and my weight is holding steady at just under 200 lbs. My caloric intake is not terribly high, but I don’t do much strenous activity anyway, so I’m probably burning just a bit more calories than I take in everyday. He looked at my ear and said he could see my eardrum again, but I should keep taking the ear drops more consistently for good measure to clear it up for good.
Dr. Vikstrom also said the levels of Erbitux in my body most likely have dropped by half since the last infusion on the 16th of March. He also told me that with radiation related hair loss (like my beard and the lower back of my head), it will take much longer to regrow than if I had been given true chemo. Erbitux is not considered as chemotherapy. Chemo patients start growing hair within a few months, but mine may take until the Fall or even Winter. UGH, that was not good news. So I’ll have to come up with a clever new hair style for a while.
So, I’m getting closer and closer to spending more time out of the house and away from my little cockpit in the home office. And I’m hoping to start eating real food sometime soon, although my taste will be “off” for a while longer. And the lack of saliva will keep me and bread separated too. I’m nearly crying as I type that. 
Not too much to report since the last post unfortunately. My ear infection is gradually getting better, and I’m sure the Erbitux is slowing this down as well. My face is ever so slowly clearing up, and my neck is in a bit better shape. My mouth feels the same as it has for weeks. Mucus buildup is still a real problem, most likely because not much has changed in my mouth. It’s still very raw. Keeping my caloric intake where it should be is a challenge, because frankly eating is a major drag and I have to work myself up to it each time.
I’m in good spirits, although still a bit bummed that the healing is so slow. Still able to work every day very easily and don’t run out of gas as much any more.
It rained like crazy last night, but today the sun has finally come up. I really love this time of year around Vacaville because the hills turn a lush green. Beautiful.
I scored a quick appt today with Dr. Vikstrom about my right ear problems. He confirmed I’ve got a pretty good infection going on. He wasn’t able to even see my eardrum due to the inflammation. Bummer. So I’ve got yet another thing to do several times a day: put drops of neomycin in my ear 4 times a day. If it helps, I’m all for it!
We also talked about how long Erbitux stays in your body. Not good news. He said that because it’s an antibody it won’t drop to half the amount in my body for 2-3 weeks after my last infusion. So this stuff really hangs around. And until it starts really leaving me, my healing will be slower than I’d like. Double ugh.
Well I seriously owe you an update since the 30th of March. Not much has changed to be quite honest. My mouth feels pretty much the same as it has for weeks, and my skin is improving slightly. The dead skin on my neck is almost gone and healthy skin is on the way and the rash on my face has also improved a bit. I still wake up in the morning and look into the mirror hoping to see my old face and not this red beat up mug I have now. Oh well.
I’m still stuck eating a daily regimen of cream of wheat in the morning with a protein shake, and another protein shake for lunch. For dinner I usually have some apple or pear sauce, some jello, a yogurt and an Ensure. This diet has very long ago become very boring, but I really don’t have a lot of options. So we trudge onward. At this point I’m down to 200 lbs, so I’ve lost about 25 lbs overall. Not too bad and I still fit in my clothes.
Over the past week I’ve lost a great deal of hearing in my right ear due to some liquid pressure build up I attribute to mucus or an infection brought on by the Erbitux affect. I’m going to try and get to the doctor today to have him take a look at my ear so I can hear normally once again. I’m a week and a day past treatment and I can still feel this Erbitux is in my body. I know the Erbitux is slowing the healing because that’s what it does, so I’m hoping to get this stuff out of me soon.
My spirits are good and going out in the sun doesn’t feel like being under a heat lamp any more. I’m able to work at home just fine, but I’m still entitled to a nap every now and then. 
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 |
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.
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.”
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