It's December!?!

Geez, time is flying along. Already December. That's birthday month AND Christmas month here at the Robinson household. With Sophie's addition last December we now have four immediate family birthdays to celebrate plus my sister's.

Life is going along OK. I just started Monday with a new treatment -- to me -- called Vital Stim. I take my lunch with me to KU Med Center, they attach four electrodes to my neck then crank up the amperage and I spread my lunch eating out to an hour while the electricity is stimulating my swallowing muscles. The objective is to improve my swallowing. It won't improve Saliva production or sensitivity to spices or those type problems, but swallowing itself is supposed to get better. Every weekday for 5-6 weeks then we re-evaluate.

Generally continue to do well. I've had another visit with Dr. Tsue since my last post. He said things were progressing as expected from his standpoint. Still tissue swelling in my throat and a few other issues, but he thought I was "on track".

I'd LIKE someone to be able to give me updated prognosis statistics now that I'm a few good scans down the road and things appear to be progressing well but they can't or, at least, don't. The other thing I've been asking is -- pretending all goes well and I don't die from Cancer -- does the fact that I've had Cancer and/or the treatment that I went through have an effect on my general life expectancy? In other words, on average do people who had chemo/radiation treatment but don't die from cancer live as long as the general population? You'd think some grad student somewhere had compiled that type data somewhere but thus far it's eluded me and, as best I can tell, eluded all the docs at KU Med.

Something nice and uplifting to ponder, eh?

Things are going well for me, though. I still have lots of eating problems, I still seem to get tired pretty easily and I take my fair share of naps in the recliner. But overall good. I think I'm going to have to give up on gaining weight -- at least in the short term -- and go buy some smaller waisted pants. Nothing I have seems to fit so I've been tightening up my belt and dealing with it, expecting to grow back into them but that hasn't happened. I am confident that as soon as I buy some smaller pants that I'll promptly gain every pound back but I'm tired of waiting and wearing baggy bottomed pants.

Happy holidays to everyone. Be safe.

Cliff

Four Scans Down

Got scan results this morning from Monday's scans. Another scan down and still so far, so good.

The scans looked good, I got my seasonal flu shot (H1N1 isn't available yet) and she said I'm looking good from her perspective. We talked about some of my on-going treatment effects with swallowing, dry mouth, sensitivity to spice, etc. She said she's confident those won't return to pre-treatment normal but many people continue to see improvement beyond 10-months where I'm at now.

Next set of scans on January 4th with a Doctor Appt to get results on Jan 6th. I'm trying to set a new record for earliest date in the year that a person maximizes out their insurance for the year. I THINK that I'll go to 6-month intervals after that, but I'll let them call the shots. I recognize I'm probably more qualified to make that decision but I'll let them. I'm trying to build up their confidence.

So, I'll hope for the best on my mouth/throat stuff, pour myself an ice-cold glass of Milk tonight to celebrate todays' scan results and settle back in to my comfort zone for a few months until my next set of scans.

Whoo-Hoo!

Still Progressing

Dang! A month and a half since my last update! A new record.

It's been relatively uneventful, though. I had a regular ol' annual physical in mid-September. He said everything looked great and just suggested I start taking vitamins. I'd be doing that already except vitamins are -- for some reason -- all horse pills and I can't swallow them. Doc told me I can just crush those up or I can take chewables. You know, like Flintstone Vitamins. That made me feel very young and vital.

He also sent me off for my first ever Colonoscopy! I am 50 now. Did that right at the end of September and actually had a little excitement related to that. He found a lesion that he couldn't remove right then and there. He did take some out for a biopsy -- I hate hearing that. After a few days of hand-wringing that came back negative but I get to schedule another colonoscopy-like procedure to remove it. So I get a double-indoctrination into senior citizen status. Whoo-hoo! That won't be until December, though.

And now, it's time for my next set of scans. I went in just this morning for a Chest CT and a CT of my Neck. I get the results of those scans on Thursday. So just when my anxiety level was returning to normal from the colonoscopy biopsy we get to jump it back up for a few days again. Not quite as anxious as I was in July, though. Not sure why, I'm just not.

Went to Springfield last weekend for a soccer tournament with Tim's school team. Pretty dang cold but we came prepared and it was fun. Stopped at Smith's Restaurant in Bolivar on the way down. Pretty tasty. Open-faced Hot-Beef sandwich with Mashed Potatoes and Gravy and some Blackberry Cobbler for dessert. It took a while to muscle it down but it was tasty. So much so that Jenny let me stop again on the way home. Same dinner but substituted Gooseberry cobbler for dessert.

I told Jenny, that was the first time since I started treatment last year that I think I have truly been full. Not quite a Thanksgiving Dinner level of full but heading that direction. Usually don't have the time or energy to eat enough to get there but it tasted awfully good and Jenny was very patient with me.

I'll update again Thursday or Friday after I get my scan results. Twice in one week! Shoot, just like the old days!

It's been a while

I was just e-mailing with a friend who's recently been diagnosed with Cancer. I told her how much luck I've had using a blog to keep people informed of my progress and how it's been somewhat therapeutic for me at the same time.

I then realized it's been forever since I've posted anything. I guess I told everyone that's the way it was going to be but who'd have thought I really meant it?

Oh well, I went to the Dentist last week. Just my regular Dentist for a regular check-up. He said everything looks great there. No new problems like I had last time I saw him so I was pleased by that.

Other than that, things just keep on keepin' on. I've seen little to no progress with eating and other local mouth/throat problems. Dry mouth is no better, tongue pain is still hanging around, swallowing is still an issue, any spice at all is still a problem. But I'm really learning to live with all that. We had a weird adjustment period where the family felt bad eating things I couldn't eat and I felt bad about their not eating things I knew they wanted to eat. But we're finding some things that meet both criteria and we're all realizing it's OK for them to have something for dinner that I can't eat and I'll just find something else that I can eat.

I don't want to say we're all just accepting this as my new normal. We're still hoping for progress but if, when the dust settled, this were my new normal I think we could all do OK with it.

Physically I continue to feel great. I don't know how long it will last but my body's still spending a lot of energy healing so I get to eat lots of ice cream and desserts and I'm not gaining a pound -- much to Jenny's dismay. I'm supposed to be gaining a little but not yet. You'll all want to dump your Mrs. Smith's stocks you have about the time I have to slow down on Desserts. I expect they'll notice a significant drop in sales when I quit buying. Right now I've been putting away lots of her frozen pies. They're pretty dang-darn good, though, if you've not tried them. Her blackberry cobbler is particularly tasty. And yes, if you're confused about my desserts and two paragraphs previous when I was telling you about all my eating problems, fruit pie goes down quite nicely.

Still going to the gym regularly. Probably contributing to my lack of weight gain but also contributing to my feeling as good as I have in years. I feel like I could run in the Kansas City Marathon this fall. Not gonna do it, of course, but I feel like I could.

Tim's first Soccer Game was tonight. They won 4-0. I'm looking forward to actually attending soccer matches this year as opposed to just hearing the wrap up like I did last fall.

Next medical appointment is a routine physical Sept 22. Then mid-October will kick of my next round of scans and related appointments. I think I'll enjoy a calm September for a change.

Holding Pattern Now

Saw Dr. Tsue last week and after his regular poking, prodding and gagging he pronounced me to be progressing on track. He thought my continued swelling inside my throat was semi-typical for 8-months out from treatment. Could be better but it could also be worse.

Dry mouth is an ongoing problem. I had hoped to get into a study that KU Med is participating in but, apparently, the study is closed. So nothing to do there.

Overall, nothing much has changed recently. Local side effects in my throat and mouth continue to linger without much change and, outside my throat and mouth, I feel really good. My only other issue is still occasional fatigue, particularly if I have a project I'm working on around the house. Unfortunately I have quite a backlog of projects around the house. So they're just going a little slowly.

Weight has been pretty stable. I'm weighing in at 170 or 171 lately. That's up a bit from my 165 lb low I had early this year but I'm not exactly packing on the pounds either. I've gotten a rash of "Gawd you look skinny" type comments of late. I've been this size for 8-9 months now, though, so I'm not sure if people just noticed or what. Some have been from people I've not seen in a long time and that's understandable. But from others I don't understand.

One more lymphedema treatment then I go to one treatment every 6-weeks there. I have a dentist appointment in late August and a regular physical in late September. But no more Cancer doctors until October. Whoo-Hoo!

Barring some unexpected new development, it'll probably be a while between blog updates now. As before, I may get some wild hair and stick something out here, but otherwise no news is good news.

Until then . . .

Another One Down

Went to the Doctor this afternoon and got the results from last week's scan. Another scan down and I'm still cancer free at this point.

I'm not sure why but I had a really bad feeling coming in to today's doctor appointment. No reason in particular other than your imagination of the unknown can be a really bad thing. I went to work today until I had to leave at 2:30 but it was pretty much a waste of a day. Couldn't concentrate on my business. Like I said, I just had a really bad feeling and my mind was busy trying to figure out how we were going to break the news to the kids, how patient my employer was going to be with another round of missed/reduced work, what my treatment options would be, etc., etc. Crazy how your brain works.

So, now I wait a few months for my next round of scans. In the meantime I continue to feel great. I still have dry mouth issues, swallowing issues, super-sensitivity to spice of any kind, etc., etc. But those are things I'm learning to live with and, other than those localized issues, I really do feel as good as I've felt in years. I'm cruisin' around with about 25 fewer pounds and I'm going to the gym pretty regularly. The Seniors Division of the World Body Builders Association hasn't called or anything (yet), but things are pretty good.

I have an appointment with Dr. Tsue the first week of August and have a few more lymphedema treatments remaining, then I'm done with medical folks for a few months other than a regular dental checkup and an annual physical.

We leave Sunday morning for a family shin-dig at Lake Tenkiller in Oklahoma, just east of Muskogee. This marks the 20th year we've gone there with my parents, my brother's family and my sister's family. Four Grandkids has become ten Grandkids and this year we've added a Granddaughter-In-Law (my nephew's new bride) and a Great-Granddaughter (Sophie). Unfortunately my parents aren't able to go this year for the first time in those 20 years. Kinda sad. But we're trying to move on. The kids all really enjoy the trip.

Next Scan will be mid-October. After that another scan in January then we'll go to 6-month spacing for the scans. Looking forward to that.

A Visit from Old Friends

Dang, as I've reported in recent posts, I thought that I was -- overall -- approaching normalcy again. Yes, I still have plenty of localized issues with my throat and mouth but, outside that part of my body, my energy level was up and I was feeling pretty good.

In an effort to bring me back to earth, the two fine gentlemen Mr. Radiation and Mr. Chemotherapy thought they'd send me a little reminder this past weekend lest I not forget them.

We had some work to do around the house. Mostly inside -- repainting and decorating a room -- but a little outside work to haul some brush and trash up to the dump. Ed and Julie planned to spend most of the weekend at our house helping so we could knock it out.

Friday night went well. We got all the prep work done -- removing chair rails, sanding, washing, priming, etc. I was pretty pooped but we had worked pretty hard so that was to be expected. After sleeping a little later than normal Saturday morning, I did a little work outside to get the stuff hauled to the dump then joined Eddie back with the painting. All was going well until we finished the first coat mid-afternoon and sat down for a bit to let it dry.

It was just like the old days. I hit a wall and couldn't stay awake if my life depended on it. I assumed my familiar position in the recliner and I was out for 2-1/2 hours, despite the youngins' being less than quiet around me. I finally woke up early evening, we ate some dinner and got to work on a second coat and some electrical work. By 10:00 or so I was exhausted again and was out in the recliner again.

Sunday was a bit better as we were putting the finishing touches on. But Sunday evening was still a challenge and I wound up going to bed earlier than I probably should have given a bit of remaining clean-up that we had to do. Sorry Jenny.

We did get done -- thanks mostly to our help from Ed and Julie -- but dang, I'm just not as far along as I thought I was. I thought my trips to the gym and working full days had prepared me for a weekend of manual labor like this but I was sorely mistaken.

On a separate note, I started work back at our downtown office last week. Much different atmosphere, less attractive commute, etc. but I'm still employed, still receiving a paycheck and -- maybe most important right now -- I still have insurance. Getting settled in now and learning the ropes.

Looking forward to my scans on Friday. Looking less forward to getting the results a week from Friday.

7 Months

Nothing really to report, now. Tomorrow will mark seven months since treatment ended. I think back on all the improvements I've made in that time and how lucky I feel that all my scans have been clean to date. I just hope the progress and the clean scans continue.

Lyphedema treatment continues, though my therapist is on vacation most of this week so I only have one treatment. But that really seems to be helping with my tongue pain, my voice is improving and, visually, I'm starting to see some improvement as well. I don't understand how/why this helps with my tongue pain but it was hurting pretty badly for several weeks and, with no other changes, has improved a lot during the four weeks of treatment. So I guess it's because of the treatment. I won't argue, regardless.

At work I move to the downtown office on Tuesday morning. So tomorrow will be spent packing and Tuesday will be spent unpacking. Should be a fun couple of days.

I go see my Radiation Oncologist on Friday this week and that kicks off this round of Doctor Appointments. Then I have scans the 17th, Dr. Williamson (Oncologist) the 24th and Dr. Tsue August 6th.

I've had lunch a couple of times with Jeff, my treatment partner who's had cancer show up in his lungs. His medication he was taking to slow/stop the growth hasn't done what the doctor wanted it to do. So he's stopped that and is weighing his options with a few different treatment paths. At the same time, he said he feels great right now and, if it weren't for the scans, would have no idea anything were wrong. That along with a great attitude and a strong faith is keeping him going. But keep him and his family in your thoughts and prayers.

Treatments Continue plus Work Changes

I've now had four Lymphedema treatments with some results. The Therapist is confident I'll see much broader results than I was expecting so I hope she knows what she's talking about. She expects reduced swelling on the outside but also improvements internally that should HELP with swallowing, discomfort, voice quality and pain reduction.

Visually the swelling you can see in my neck has decreased some and my adam's apple is a bit more visible. Tongue pain has decreased pretty dramatically in these two weeks. Unsure how much of that to attribute to the treatments but I'll take it. But, I'm two weekds in to eight weeks of treatment and I'm happy with the early results. Hopefully those will continue.

Had some cost-reduction type changes at work last week. Several people lost their jobs. I'm fortunate enough to still be on the payroll but will be changing positions, moving back to our downtown office from the Grandview office, getting a new boss and serving in a different role. Kinda a stressful situation. But, like I said, I'm fortunate to still be employed so I'm thankful for that.

July will bring about my next tour of Doctor's offices. I'll have appointments with my Radiation Oncologist, my Oncologist and my ENT Oncologist spread out through the month with my next set of scans mixed in there on July 17th. My first appointment after the scans is on July 24th so that's when I'll get those results. Almost 5-weeks away but the suspense is already starting to build. I guess I just have to get used to that but no matter how well previous scans have gone, scans still carry with them a full set of anxiety each time.

That's today's update.

Wedding and a Massage

Traveling to the thriving metropolis of Eastland, TX this weekend for my nephew's wedding. Should be fun. Six of us -- including a baby and Caitlin who just had surgery on her shoulder last Friday -- all in one car. We're breaking the trip up on the way down so it's not too stressful and so we can all be rested back up on Saturday evening for the wedding. But we're hoping (dreaming) to drive all the way back on Sunday. We'll see. We have a contingency plan if things go awry.

I got the insurance stuff squared away and I WILL be able to have the Lymphedema Therapy. It starts next week. I'm not 100% sure what's involved but it's supposed to help with the swelling I get in my neck. About every third day or so I wake up in the morning with a golf ball just below my jaw or with my neck from my jaw down to my Adam's Apple puffed up. Somewhat cosmetic but also functional with my swallowing. The more isolated golf ball type swelling usually spreads out and dissipates by mid-morning but the more general swelling will be with me most of the day.

So, this treatment is intended to minimize this problem. We'll see.

Another Good Report

Had my 2-month follow-up with Dr. Tsue today. It was really just a 4-week follow-up since I was in to see his P.A. about 4 weeks ago about my tongue, but we'll go ahead with the 2-month label. Clearly, it's critical that we label it correctly, right?

In any case, he did his normal poking, prodding and sticking stuff down my throat. Afterward he said everything looks good and I'll see you in a couple of months.

Rather uneventful but that's a good thing in my situation.

Dr. Tsue lined me up with a therapist to help with swelling in my neck. A condition called Lymphedema (or Lymphoedema or Lymphodema depending on your source). I'm not sure the treatments will be covered by insurance, though, so we're going to have to wait to get that figured out first. This treatment might get classified as Physical Therapy by the insurance and I've already used up most of my annual allotment of P.T. sessions on my shoulder.

Overall I feel great now. Energy level continues to improve, sleeping is getting better and people keep telling me I look healthier. My throat area is my only area that doesn't feel semi-normal now. Of course, my throat area effects my taste, my swallowing, my voice, mouth pain, lack of saliva, etc. so it's still kinda a pain in the toosh, but I'm generally a lot better off than I was before.

I asked Dr. Tsue about the mouth/throat symptoms. He said they'll continue to improve for another 6-months or so but progress will slow and he doesn't expect any of it to return to pre-treatment normal. So, at some point we'll just have to assume where ever I'm at will be my new normal from there forward. But until then I'll keep hoping for marked improvement.

I've been going to the gym pretty regularly and I'm really feeling pretty good if I could get rid of my mouth and throat. I haven't gained any weight back yet but I expect that's because eating is such a pain I just don't eat all that much. I try, though. Is dessert a food group? I'm pretty good with that.

Whew!

Just when I thought it was safe to go back in the water . . . or the doctor's office . . . we got a LITTLE scare this past week.

The back-left part of my tongue has been way sore for over a month now. Dr. Tsue said that it was related to the dead bone in my jaw and that it would go away after I recuperated from my surgery a few weeks ago. That didn't happen. My jaw, my teeth, everything else is feeling fine, but not my tongue.

So last Wednesday I went in to see Dr. Tsue's P.A. She said the sore on my tongue was bigger than it was at the time of surgery. She didn't expect anything to come of it but wanted to do a biopsy to make sure. That biopsy word just scares the crap out of me these days.

In any case, she cut a couple of pieces of tissue out (which was a joy all by itself) and sent them off to the lab for a biopsy.

As I told Jenny, I've not been too worried about this. After all, she said she didn't expect anything. But I'll tell you, when you actually get on the phone with her to get the results, your heart rate goes way up regardless how cool you are. And you all know how cool I am, right? The next few seconds could bring good news or they could bring devastating news.

Well, to cut to the chase, the results were negative. Still no Cancer. She said she's not 100% sure what's going on but I'm supposed to continue with my 4-times-a-day rinse and I already have a follow-up appointment with Dr. Tsue in late May so he'll assess progress at that point.

So, I can relax again.

Well, sorta.

Hardware Free

Sorry ladies, no bare-chested photos to gawk at this time around.

Everything went well with removal of my PEG Tube and Port yesterday. I was a little sore last night and that's continued today but not a big deal. For the short term the lump on my chest and the tube sticking out of my stomach have been replaced with several layers of gauze taped on in those same locations, but those will just last a few days then I'll get back to normal. Only other restrictions? No heavy lifting and no swimming for 7 to 10 days. Not clear how I'm going to get by without being able to do those but I'll just have to find a way.

I saw my Orthopedic Doc this morning. I still have some work to do with strengthening but, basically, I'm done with Doctors and Physical Therapists as far as my shoulder are concerned. Plenty of exercises to do on my own at home to maintain my range of motion and to improve my strength, but all stuff I can do on my own.

So, I'm not really sure what to do. As of today I have no Doctor Appointments, scans or anything else medical on my schedule until May 28th. After that my next appointment is out in July. I'm sure my poor car is going to have withdrawals, not knowing what to do without two or three appointments to drive to each week. I'm confident we'll be able to work through it, though.

Along with the decrease in Doctor Appointments, you can also expect a decrease in posts to this blog. Barring something unexpected, I shouldn't have anything new to report for quite some time. My May appointment is just a follow-up with Dr. Tsue (ENT) and my next set of scans isn't until July. I'm sure I'll get a periodic wild hare and post something, but don't expect too much meaningful content before July. Much like my car, I'm confident you'll all be experiencing withdrawals.

Put Your Shirt On!!

Alright, kinda out there on this one, showing off my non-sculpted body. But tomorrow's the day I get my PEG Tube and Port removed. I can't wait.

As you can see the PEG Tube -- the white dangly thing hangin' out of my stomach -- is not exactly a hot, sexy look. And it's always there, in the way, getting caught on my shirt when I move, etc., etc.

I think you can see the lump on my upper-right chest. That's my Port. If you were looking in person or if this were a higher resolution picture you could trace the path of the tube that runs under my skin from the port to an artery in my neck. Again, a hot, sexy look.

But, tomorrow this stuff's all gone. I'll be able to lay on my stomach again, I won't have to worry about the PEG when I'm taking off a shirt, and on and on.

It's Official!

OK, got biopsy results yesterday from last week's surgery and saw my Oncologist this morning to get final Scan Results. Everything was clean.

For the time being, at least, I've nary a cancer cell in my body.

Of course, I have to do this for another 4-1/2 years to really say this is behind me, but this good, thorough set of scans, biopsies and Dr. Tsue's check-up last week gets me off to a strong start for getting through those 4-1/2 years unscathed.

Dr. Williamson wasn't too optimistic about some of my other symptoms -- dry mouth and swallowing problems in particular -- getting much better than they are right now. Those might just be a fact of life from here forward. He's more confident about the fatigue. But that's all side issues today. The lead story today is the scan results and biopsy results. And that was all good.

Also was able to tentatively schedule removal of my Feeding Tube and I.V. Port for next Wednesday (Apr 22). Looking forward to getting all that hardware out of me, particularly the Feeding Tube. Another step in the direction of normalcy.

So it's a good day today at the Robinson household.

Back Home and Feeling Good

Had my scans yesterday and surgery today.

Dr. Tsue scraped out the dead bone from my lower left jaw. No reconstruction or anything like that required at this point. If it heals up the way he thinks it will this will be behind us for the time being at least. Dying bone is an on-going risk after radiation treatments.

While he was in there and had me asleep he did a pretty thorough examination of my throat, esophagus, larynx and all points in between. He took tissue out from a few different spots to run a biopsy on, though he said everything looked good and he doesn't expect anything to come of the biopsies.

He had only preliminary results from yesterday's CT and PET scans but said those both looked good. He said there were some hot spots in my throat from the PET Scan but those looked to be the result of the continued healing from Radiation rather than any cancer.

I'll get biopsy results from today's surgery early next week and I see my oncologist next Tuesday and he'll have final scan results to review with me including the pictures themselves.

So, I'm in a pretty good mood right now. Tentatively optimistic now, reserving the real celebrations for next week after I get all the final stuff.

But, a "Yippee!" is still in order.

Back on Track

OK, after 150,000 phone calls and some help from my H.R. folks, I think we're back on track for everything.

Scans will be Monday afternoon. There was some concern if this would give Dr. Tsue enough time to review the scans and plan his approach to Tuesday's procedure but, as of yesterday afternoon, he tells me to come on in Tuesday and we'll get it done. So, Monday and Tuesday will be pretty busy but, by the end of the day Tuesday, I'll be right where I was planning to be all along. And I'll then have my follow up appointment with my Oncologist the following Tuesday, April 14th.

Quick post today but thought I'd let everyone know.

Kinda Grouchy

In a nutshell, my scans schedule for tomorrow morning have been canceled. Got a call from the Oncologist's office and they've not received pre-certification from my insurance company. I tried to call the insurance to explain the situation -- i.e. A) we're talking about Cancer and B) I have three follow up appointments that are all tied to these scans tomorrow. Pretty much I got a response that sounded a LOT like "our policy is that our nurses have up to 15 days to approve procedures". And you should use a tone that reeks of "I don't care" when reading the response.

Butler changed Insurance Providers this year so this is new. Our previous Provider approved stuff like this near instantaneously. And from talking to the Doctor's office, it sounds like that's what they're used to.

Particularly annoying? These scans were scheduled on February 24th. 5+ weeks before the procedure. But the Doctor's office waited until late last week to request Pre-Certification. Since they usually get near immediate approval they wait until 3-4 days before a procedure. If they pre-certify "too early" then there's a risk the procedure will have to be changed or cancelled.

All in all, I'm fit to be tied. I've griped at the insurance company, I've griped at the Doctor's office and I've griped at Butler's H.R. Department. But the scans will now be delayed. Not sure about the impact on my other appointments. I guess we'll see about that when the dust settles on the insurance. I already have a call in to Dr. Tsue's office to see if they have a similar problem with pre-certification for my "surgery" next week, though that may need to be moved any way if he wants the scans before the surgery.

Not my most uplifting post, I must say. But have a nice day.

Appointments Coming Up

I saw my orthopedic surgeon who worked on my shoulder last year. He was pleased with my progress. We still have some work to do with getting strength back but it's progressing. I continue with Physical Therapy but we'll cut down to once-a-week and focus on strength, mostly stuff I can also do at home.

This Wednesday (Apr 1) I have my next round of scans. I arrive first thing in the morning, go to the lab for lab work then head up to radiology for a CT Scan and a PET Scan. It's not clear when I'll get the results of the scans. I have a few appointments over the next few weeks.

On Friday I have my regular follow-up appt with Dr. Wang, my Radiation Oncologist. I'm sure he'll have scan results available to him but I don't THINK that's part of his repertoire. We'll see.

The following Tuesday (Apr 7) is when I have my procedure with Dr. Tsue where he'll scrape out the dead bone in my jaw and do some investigative work in my throat while he has me there and asleep. I'm assuming we'll get some feedback from him on the scans and on what he did/didn't see in my throat.

Then on Tuesday, April 14th I have my follow-up appointment with Dr. Williamson, my Oncologist. I'll CERTAINLY get a full report from him that will include the scans, Dr. Tsue's findings, Biopsy Results if Dr. Tsue removes some tissue to check, etc. So by then I'll have a good, complete picture of where we're at with the whole Cancer thing.

So, I'll have a bit of an anxious next couple of weeks.

I had lunch with Jeff last week, my fellow patient who's found his cancer has spread to his lungs. He's doing great under the circumstances with a great attitude about the whole situation and a strong faith to help him through. He's on a medication now that's intended to slow or stop the growth of the cancer. He won't know until late May how effective it's been and if that will just be his ongoing treatment for the rest of his life of if they'll try something different. Please say a prayer for Jeff and his family.

Jeff helps me to keep my anxiety in perspective.

Fix-A-Jaw

Went to the Dentist a couple of weeks ago for my first post-treatment cleaning and check-up. Coincidentally I had started having some gum and tooth pain in and around the furthest back tooth on the lower left side.

Scott checked it out and said he suspected some of the bone in my jaw had died and was sluffing off through the gum, causing the sore that's there and the general pain in the area. He sent me down to my Oncologist/ENT at KU Med Center to get it checked out and I had that appointment on Thursday. Things have continued getting more and more sore over the last couple of weeks and, by the time I saw Dr. Tsue my tooth was very sore, the inner gum is very sore and the underneath side of my tongue back in that area is REALLY sore. It's made eating more of a challenge than it already was.

Dr. Tsue did his normal examination -- stick tubes down your throat through your nose, stick his hands half way to my stomach through my mouth and poke and prod on all the sore areas to see where it is and isn't sensitive. Not fun.

Afterward he suggested a quick surgical procedure. I get knocked out for the festivities, he scrapes the dead bone out and, while he's in there and I'm asleep, he'll do some thorough investigating in my throat, maybe even remove some tissue for testing, to make sure all is well and none of the Cancer has returned in that area. That little bit of fun is scheduled for April 7th and will come on the heels of my Pet Scan and CT Scan on April 1st. So, once we get through all that we'll have a real good picture of where we are with the whole cancer thing at this point in the process.

In the meantime I have some mouth rinse I get to use 4-times a day to keep the area with the open sore clean and free of infection.

Other than this exciting new development with my jaw bone everything else is just continuing on. I still fall asleep most evenings before anyone else and wake up before anyone else in the morning. I have started going to the gym and getting a little exercise. Mostly just walk on the treadmill and lift very light weights. Nothing above my head, though, because of my shoulder. I'm not really stretching the limits on the exercise, taking it slowly instead, but it feels good to get a little exercise and it gets my blood flowing.

Eating has been a bit of a struggle lately. Between dry mouth and my swallowing I've not made a ton of progress. Tastes seem to be improving a bit but swallowing and sensitivity to spice hasn't.

Dry mouth, in addition to contributing to my eating problems, has been a real pain all by itself. I wake up every morning with my tongue cemented to the top of my mouth and the sides of my throat stuck together. Interestingly, drinking water doesn't really help that much. I pretty much carry a water bottle around 24/7 to sip on, but some milk occassionally seems to help more than anything. That doesn't seem right but I'm not asking questions.

Fellow patient Jeff did, in fact, find out the nodules in his lungs were cancerous. He was given a few treatment options and opted for a daily chemo-pill treatment that doesn't carry as many side effects as some of the other options. He started those last week so throw some happy thoughts his direction these next few weeks. He and Rhonda need them.

So, that's the update for now. Between now and early April all I have is Physical Therapy for my shoulder -- which is improving in leaps and bounds -- and a follow up appointment with my Orthopedic Surgeon for my shoulder. So, there may not be tons of updates over the next few weeks unless something changes. But, who knows, maybe I'll get bored some morning when I wake up at 4:00 or 5:00 and I'll throw something out here.

SLC and Home

Well, made it to Salt Lake City yesterday and back home today. Yesterday was my biggest worry. I got way tired as the day went on but made it through all the mandatory meetings and site visits. My travel partner, Rich, was very accommodating on dinner. We made a quick visit to Arby's -- Tim would be jealous -- so I could get back to the Hotel and go to bed. Yes, I went to bed at 7:00. I then woke up at 4:00 but felt pretty good at that point. Read for a while then got going for the day.

Since we got finished up yesterday, today was just a matter of going to the airport and flying home. Made it home about 4:45 but I think my family has been kind enough to share their Flu with me. I went to bed right when I got home and slept until about 10:30 tonight. Not feeling very well now and will be going back to bed shortly, but thought a quick update might be in order.

I had my swallow study on Monday and that went well. Still things to work on but she said to just keep eating and swallowing and things should continue to improve for several months. Unfortunately she also said that improvement will continue but will probably NOT return to pre-treatment "normal".

Other than that, not much to report. Obviously fatigue is still a problem. Taste and spices are still problems when eating. And dry mouth continues causing it's own set of problems with no miracle cures discovered to date.

That's all to throw out there for now. Time to go back to bed.

February Closes Out

Well, things just continue plodding along. Nothing spectacular but I'm continuing to make progress in most areas. Dry mouth is the only thing that's going the wrong direction but it's gone pretty far south and is a pretty good inconvenience.

I had a few appointments this week. First was the Nurse Practitioner at the Oncologist's office. She said I'm progressing as expected. She gave me a prescription for some pills that I take 3-times per day that are supposed to help with the dry mouth. I haven't been able to remember to take them 3-times in any one day yet so I can't exactly say if they're going to be a help or not. We scheduled my next round of scans which will included a CT Scan and a PET Scan for April 1st. No snickers from the wise acres out there about scheduling this on April Fools' Day. I then have an appointment with Dr. Tsue (ENT) on April 2nd, with the Radiation Oncologist on April 3rd and, again with the Oncologist in mid-April.

Eating continues to move along. Still problems with spicy food, my tastes are still screwed up and I still struggle a bit with swallowing some things and get choked some, but all are progressing some I think. I've managed to gain 4 lbs in the last month so she was ready to schedule a date to have my PEG Tube removed. Then we talked and decided it would be prudent to wait until AFTER the PET & CT Scan . . . just in case. Not that I'm not carrying around a positive attitude but we also have to be practical. But, if I get a clean set of scans April 1st then I'll be getting my PEG tube removed sometime in late April I expect. Looking forward to that.

On Wednesday I had a check-up with my regular dentist. He's a family friend and knew the whole history here. So he gave me a thorough once over. Dental problems are common after Radiation treatment to the face/neck area because of all the problems the treatment causes to the bone structure, the saliva glands, etc. I've been using my flouride trays for 30-minutes a day most days, brushing immediately after everything I eat -- often 4-5 times a day -- and flossing pretty religiously, all of which I'm supposed to do the rest of my life. He gave me a general clean bill of health but I do have a sore low down on the inner gum next to my furthest back lower tooth. I assumed it was the flouride tray rubbing and causing irritation. Scott said it COULD be that be he suspects there's an infection in the tooth that's making it's way out through the gum there and causing the sore. My tooth and jaw are sore in the same area. So I have some extra mouth-rinse stuff to use a couple of times a day then go back in to see him late next week to see how it's doing. Hopefully that will get it fixed up, though I've seen no progress in these first few days.

And finally, Thursday was my follow-up appointment with my Orthopedic Surgeon for my shoulder. I got glowing reports there. Making light-years progress since my appointment a month ago. Still a lot of strengthening that needs to be done -- I couldn't lift a can of coke above my head right now -- but my range of motion has improved dramatically and is near normal. That was the concern. Strength will come when it comes, range of motion CAN be lost forever but, apparently, not for me this time. So, I continue with my physical therapy for four more weeks then go back to see him again.

Monday I go in to see my Speech/Swallow Pathologist and to have a Swallow Study to see how I'm progressing on that front. I feel like I'm doing much better. Again, I still choke some and have some problems, but I can swallow pills now and I'm not really shying away from anything from a swallowing stand point, I just have to be careful. We'll see how that goes.

Then, Tuesday and Wednesday I'm off to Salt Lake City for a business trip. I'm a little concerned about that for fatigue. Tuesday, in particular, will be interesting with an early morning flight then an afternoon spent going around to look at job sites and back to the office for some meetings. Hopefully I won't fall asleep mid-meeting.

So March will be a couple of Physical Therapy sessions a week plus one Doctor Appt with my Orthopedic Surgeon. April will have a flurry of appointments the first few days then a couple more spread out in the month. And if all goes well, Doctor appointments will start being few and far between after that. I'm sure my boss is looking forward to that.

My buddy and fellow patient Jeff had his lung biopsy Wednesday. Of course, since everything's so non-stressful for him right now, he had a bit of a complication with the procedure itself. His lung didn't reinflate properly and he had to spend the night Wednesday night. He came home Thursday afternoon and now has a stressful several days waiting until late next week for the results. Keep him and his family in your thoughts and prayers if you would.

Progress Continues

It's been nine days since my last post. For the most part, no news is good news as far as my personal progress.

Dry Mouth is getting to be a bigger and bigger deal. Partially because it seems to be getting worse and also because the other stuff is getting better. But it's really a pain while sleeping and while eating.

Eating is going very well over all. I'm eating lots of different stuff, including bread and rice occasionally that were both on my "not supposed to eat" list. I've always been a bad boy, ya know. Anything that's remotely spicy gives me lots of problems. I've not been able to nail down a specific ingredient(s) that set me off, but my mouth really lights up at the slightest hint of spice. So Mexican food and Barbecue, two of my favs in the past, have to wait a while. Haven't tried a steak, pork chops or heavier meats like that. And I still have occasional choking spells and frequent throat clearing during meals, but that's improving as well. And I'm to the point I can swallow pills. So I've not used my feeding tube at all for about two weeks now. Very pleased.

The dry mouth thing makes most of my meals take WAY longer than everyone else. Ed and Julie invited us over for dinner the other night. Grilled Chicken, baked potatoes, Mac & Cheese and Salad. The Mac & Cheese went down easily. The rest of the meal took me about an hour. Literally. One medium chicken breast, a good sized baked potato and a small salad. Everyone else was done and the dishes were done before I finished.

Of course, I did get out of helping with the dishes but I'd gladly trade that off with a non-marathon length meal.

Still falling asleep between 8 and 9 O'Clock most nights. Did that after dinner at Ed and Julie's. Did that last night with company over at the house. It just hits me hard and it's like I've been drugged or something and I couldn't stay awake if I wanted. Doing better with fatigue during the day. Still can't do much, physically, but I'm getting better.

Mucositis has gotten a lot better. Still a bit of a problem when I wake up in the morning but not much during the day. Mouth/Tongue pain is still there. It causes me to not be able to do some things all of you take for granted but it's getting better and is manageable.

My Physical Therapy for my shoulder has worked miracles. It's still pretty weak but we're working on that. I have something approaching full range of motion now, though, with minimal pain or discomfort. Strength has improved to the point I can do about anything without help from my other hand as long as I don't have a significant weight in my hand. So I can reach for things or put dishes away in the cabinets, but if whatever I'm lifting weighs more than a pound or two, it gets difficult. But it's SOOOOOO much better than it was a few weeks ago, I'm elated.

And last, I'd like to ask each of you to send some happy thoughts in the direction of fellow Cancer patient Jeff. Jeff had a nearly identical case to mine. Stage 4 tonsil cancer with some involvement of the lymph nodes in his neck. We went through the same treatment regimen, starting and ending on the same day. And he and Rhonda have been great and supportive as we've talked back and forth while both families are trying to get back to normal. Unfortunately they found out recently that Jeff appears to have Cancerous Nodules in his lungs. He has a biopsy next Wednesday to confirm the PET Scan results, but the doctors are pretty confident. As you can imagine, that's tough news to swallow so please keep Jeff, Rhonda and their two kids in your thoughts and prayers.

Feelin' Stronger Every Day!

Again, like the Oliver heading, you can sing the tune while you're reading the heading.

With a week-and-a-half of eating under my belt, I'm feeling much improved in that same time. I'm not sure if it's because I've been eating again, because I'm getting a little exercise with my shoulder physical therapy, because I'm 2-months out from treatment and I should be getting better or what. But I really seem to have made a big jump recently in how I feel.

Eating itself is going better than anticipated. I continue experimenting with different foods to see what I can/can't swallow well and what does/doesn't taste good. My tastes are still pretty screwed up and several things that I've always liked or even loved just don't taste good to me now. Hopefully that's short lived.

I'm still sleepy at night and don't stay up late very well. And I've still got some throat issues that cause me sleeping problems, swallowing problems and others, but all that's improving and, overall, this last week or so has seen my biggest improvement by a long shot.

I turned half-a-century yesterday. 50-years-old now. We did very little to celebrate - my idea. Jenny really wanted to do something significant to mark the occasion but you don't plan things like that the week before the event. But three or four weeks ago when she probably needed to plan some kind of shindig, we had no idea how I was going to feel. In fact, even with my recent improvements I wouldn't have felt much like a party. So we'll try something in a month or so after I'm feeling better and just pretend it's my birthday.

Now, the real objective given the events of the last five months is to celebrate birthday number 55. When I celebrate that milestone I'll also be able to celebrate 5-years of cancer-free life which is the milestone for considering yourself "cured".

Now that I said above how much better I'm doing, one thing has really gotten worse during that same timeframe. Dry mouth. My mouth is a desert lately. At night the swelling in my throat and sinus area has turned me into a mouth breather while I sleep and, dang, it's amazing when I wake up. My tongue is STUCK to the top of my mouth and/or the back of my throat. Can hardly release it. During the day things aren't quite as bad but I really need to keep a water around. I've been using a gum and a gel product that help some but are hardly miracle cures. Just something I'm gonna have to get used to, I suppose.

A couple of tidbits before I close. 1) Sophie is awfully dang-darn cute and 2) Mizzou basketball boys whipped up on KU last night. Well, "whipped up" might be a little strong. They won with a shot at the buzzer after trailing for 39 of the 40 minutes in the game. But they won, that was the point!! Nice of them on my birthday, eh?

One Week of Food

It's been wonderful these last several days getting back into eating. I've been experimenting at every meal to see what works well and what doesn't. I'm certainly not off eating whatever I want but I have enough options that I've been pretty happy.

I apparently still have some issues with at least some spices. I had some corn/onion/other stuff salsa that I ate with a spoon and I thought it was pretty hot. I was getting beads of sweat on my forehead. A few days later I thought the same thing about some baked beans I had from Price Chopper. Spicy beans at Price Chopper didn't make sense so I asked Jenny and she informed me that neither the beans nor the salsa was spicy at all to her. So something's going on there.

I've had a few things that haven't gone well because of taste or difficulty swallowing, but for the most part, if I don't get crazy trying to eat something I have no business even trying, everything's gone well. Soups go down well and taste good. Oatmeal works well for breakfast. Most fruits work as long as I chew them up really well. Macaroni and Cheese was good. Actually had some fried chicken that worked well as long as I peeled off the skin and crispy stuff and took small bites.

So I'm getting back in the eating groove slowly but surely. Fellow patient Ron who had the same treatment regimen I had except that he was six weeks ahead of me on schedule got his feeding tube removed last week. I can't imagine being ready for that five weeks from now. I'm still relying on my feeding tube a fair amount and right now at least couldn't swallow a pill if I had to.

But we'll see. I have my next Swallow Study on March 2nd so maybe I'll surprise myself.

I've also scheduled my first business trip since treatment. Just a 2-day trip to Salt Lake City the first week of March. I'm a little leary. If I made that trip today I'd be absolutely exhausted by the time I flew out there that I'd be out of commission that afternoon to do anything. Hopefully Mr. Fatigue will be kind to me between now and then.

So things are progressing. I'm still pretty tired. Mucositis actually seems to be making progress. Dry mouth is now becoming a bigger problem so I have to sip water a lot and I'm going to try some gum designed especially for dry mouth. So I'll need to experiment with that. Sleep seems to be improving. I still wake up between 5:00 and 5:30 but that's OK. All in all, progress seems to be coming quicker all the sudden. Maybe it's psychological because I'm eating now. Who knows.

It's a shame Ben's tied up at training without Internet Access and can't read this. Because Mizzou beat Texas last night -- IN AUSTIN! Nice win for the boys in Black and Gold.

Correction: Ben DOES have internet access I see from his comments to my last post. So, enjoy the Mizzou win, then.

Food, Glorious Food!

While reading the Headline, add some music to it, imagine some orphans dancing around and do what I couldn't do with a canned Blog-Website. You go, Oliver!

OK, relevance. I visited the Speech/Swallow Therapist today. I came away with authorization to get back in the eating game. I still have a somewhat limited playbook -- I'm supposed to stay away from heavy meat, breads, things that separate when you eat them (like rice) and I have to be careful with mixed-consistency foods like, for example, chicken-noodle soup where you have a thin broth together with noodles and chicken chunks. When I do eat, I need to have a glass of water handy to help wash stuff down and she suggest lots of sauces and gravy. Other than that, it's pretty much anything I want. I'm supposed to experiment, blend things up in the blender if needed, and try to eat something three times a day.

I'm PSYCHED!!

I jumped right in tonight and had a good sized bowl of clam chowder. It went down pretty darn well, tasted good and got my courage up so I continued on and had two Chocolate Chip Cookies for dessert. Homemade Chocolate Chip Cookies, pretty fresh out of the oven.

Jenny and I had talked about going out for Mexican and I'd try a bean burritto or, maybe, Huevos Rancheros. But our Mexican Food buddies, Liz and Keith, were working at a Pancake Dinner fundraiser at school so we decided to wait until Saturday instead. What's up with a Pancake Dinner? I asked them that a few weeks ago when they told me about it. They weren't sure but, apparently, it's a successful fundraiser so who cares.

It's 11:30 and I've not been asleep yet. This is a new record I believe. We checked out Legends of the Fall and watched it with Emily and Tim. Good movie. Little bit of a downer, I suppose, but still watchable. Brad Pitt is almost as good looking in the role as I probably would have been.

Mini-Update

Now that we're past all the exciting stuff with Video Swallow Tests and CT Scans I don't have nearly as much to report now.

I do have an appointment tomorrow afternoon with my Orthopedic Surgeon who worked on my shoulder last August to see if we can't get that moving along again now that I'm feeling better and I have a new set of Physical Therapy visits available with my insurance. On Friday I have my follow-up with the Speech/Swallow therapist to see if I'm making progress on that front and what to do to continue making progress.

Sleep stuff does seem to be coming around a bit. I'm still awfully tired in the evenings and fall asleep mid-evening if I haven't squeezed in a nap or something. But I'm making myself get up for a bit before, then, going to sleep for real. Get up around 10:00-ish, "eat", attempt a little family communication, read a little, whatever. Just stay up for a while before going right back to sleep. That's helped and I'm usually able to then sleep until 5:00 or 6:00. I've also managed a nap a couple of times so that I could go to Tim's soccer game late at night or watch a show I wanted to watch. That's had kinda the same effect. Eventually go to bed and sleep until 5:00 or 6:00. Not bad, particularly on weekdays, but I still wouldn't mind sleeping a little later on weekends.

Hopefully I'll get permission to start eating at my session on Friday. Food is just looking and smelling REALLY good right now and it's getting harder and harder to just go over to the kitchen sink, get out my syringe and pump a couple of cans of formula into my feeding tube. Yes, I'm no longer hungry but it's hardly satisfying. Just something you gotta do like brush your teeth or change the oil in your car. I've been doing my silly tongue exercises, though, so hopefully this will change soon.

Having said that, I'm pretty sure Jenny likes the idea that I can't eat. Shoot, we can go out to dinner and it doesn't cost nearly as much as it used to now that I just get water. Just kidding, of course. She's cheering me along like she has been the last several months.

Last bit of whining -- I hate this mucositis thing. The doctors keep saying "the secretions should improve over the coming weeks/months" and it all sounds real clinical and good. But the fact is it's a pain in the rear end, it's gross, it's uncomfortable, it makes me talk funny, it causes me to sleep in a recliner and I STILL wake up choking or gagging a lot. I'm really ready for that to be done.

That mucositis is really my only true complaint. Well, that and the fatigue thing. Those are really the only things. Kinda lucky, aren't I? I supposed you could throw the non-eating in there also but, no kidding, that's the only three things I have to complain about at this point. Except for the pain at the base of my tongue, I mean. Other than those four things, everything's hunky-dory. . . . .

Caity was home last weekend and we all had some good family time. Purchased Wii Fit and got it set up. I'm confident that will allow me to re-sculpt this skeletal physique into Greek God stature in no time. Now, if I can just quit losing weight maybe I can get started on that endeavor.

I've been asked so I'll just throw it out there. I'm cartin' around about 165 lbs right now. I can't remember the last time I weighed 165. Eighth grade, maybe?

Geez, didn't I say at the beginning I didn't have much to report?

Still Good News

Friday's appointment went well also. They reviewed the scan results briefly but we had already done that with Dr. Tsue on Thursday and they didn't really have much to add. It looks good.

So my Thursday and Friday appointments that I was so worried about went off about as well as can be expected. They told me today that we'll do another CT Scan along with a PET Scan in three months -- late April. I haven't actually scheduled those yet but will at my follow-up appointment with the Oncologist Feb 24th.

Other than that we talked about lingering side effects of the treatment -- fatigue, mucositis, eating (or not), tongue pain, etc. He said these are all normal and will continue to improve over the coming weeks/months. He said some people have these last as long as 6 months so I guess I just need to be patient.

He did do some lab work today to check my Thyroid just to make sure that's not contributing to my fatigue. Frankly, he doesn't think it is but is checking just to be sure.

Along those lines, we went over to my brother's house tonight for a birthday celebration for two of his 150 kids. There was a house full of people there with visitors from my sister-in-law's side of the family as well. Plenty of noise with the kids playing and everyone talking. Guess who fell sound asleep in the recliner at 7:00. No, not Sophie. Cliff! Geez, how embarassing.

Why Wait!

Alright, I received a much more thorough review of my CT Scan this morning from Dr. Tsue and his Resident than I was expecting. So, I know I said I wouldn't be posting again until Friday but thought I'd go ahead today any way.

Bottom line, everything looks as good as can be expected at this point. There's still some swelling in my throat, a couple of my lymph nodes are still larger than "normal", but they said that all that is a reaction to the treatment. After reviewing the CT Scan, poking and prodding me and sticking things down my throat through my nose, they pronounced me in as good a shape as can be expected at this point.

Granted, they can't do a PET Scan yet, my left tonsil is still somewhat larger than my right and there's those couple of Lymph Nodes, so nothing's a lock or anything, but they were very positive about what they saw and certainly left me feeling pretty good.

So good news so far. Now, if I can just convince my oncologist to be as upbeat tomorrow I'll be feeling really good.

I did lose another 4 lbs since my last visit. Not a good thing. Me and my skeleton physique need to start eating.

Gettin' Nervous

OK, not a big deal. It's just that in the next 48 hours I'll get bits and pieces of information that will dramatically affect my prognosis from here forward.

I know, this is "just" a CT Scan, not the more comprehensive PET Scan. But they can't do a PET Scan yet so this CT Scan is my first feedback to let me know if the treatment worked or not. If you get out of the gate with clean scans after treatment -- this CT Scan and, later, the PET Scan -- the prognosis goes way up compared to if these scans come back with signs of lingering Cancer.

So, yeah, I'm pretty nervous.

My first appointment is with Dr. Tsue tomorrow morning. Like I said a few days ago, I THINK he'll only review part of the CT Results. I'll then get a more detailed review at my oncologist appointment on Friday afternoon. Not sure why that is but that's the way I understand it's going to play out.

My sleep continues to be a problem. Wonder why?

But I REALLY struggle to stay up past 8:00 or so then wake up in the middle of the night some time. Sometimes it's 5-ish hours of sleep. Sometimes it's a little more. But sleeping from 8:00 until 3:00 am is still not right. I've got to break the cycle somehow but, honestly, when 8:00-ish gets here it's lights out, no matter where I am or what I'm doing. Jenny and I are trying to figure this out but without success to date.

Tongue and face exercises are going well, I guess. Not sure what to expect in what time frame. Mucositis and fatigue are really my two biggest problems right now. Not eating is a close 3rd right behind them but that's an inconvenience and doesn't REALLY interfere with my life like the other two are.

I probably won't post again until Friday afternoon or evening once I have all my results in from my CT Scans. That's unless Dr. Tsue surprises me tomorrow morning and gives me the complete rundown.

Infomercial Expert

Here we go again. Another sleepless night. Worst night yet in this recent bout of insomnia.

Went to sleep around 9:30-ish last night but woke up about 1:00 and haven't been back to sleep yet. I'm not sure if I'm worrying about scan results or what. I'm sure that's at least contributing. But it's also not like I'm sitting here fretting or anything, either. I just can't sleep.

I did see a couple of keen get-rich-quick infomercials this time. If I had just put the time to productive use instead of idly watching the commercials I'm sure I could be a billionaire by now. What was I thinking. Shoot, I could be making $10,000/month right out of the gate just working in my spare time. I'd say 1:00 am to 4:00 am qualifies as spare time, wouldn't you? I guess I just need to quit being such a slug.

My mucositis has seemingly gotten worse in the last several days rather than better. Everything else seems to be making slow but sure progress, but not the mucositis. That's likely contributing to my lack of sleep as much as anything. I wake up with tons-o-crap in my mouth and throat and it's difficult to clear out. Enough detail there. But I'm really ready for that to be over.

Oh well, I'll go gargle and see if I can't get myself to a point of being able to breath clearly without gagging then see if I can't get back to sleep. I'm sure I'd have no trouble sleeping at work on Monday -- if I chose to, of course.

Sleep, Sleep, Sleep

Not sure what's happened but I've suddenly started my up in the middle of the night thing again. This is a few nights in a row, now.

For a while I was falling asleep mid-evening and waking up at 3:00 or so in the morning. Last night I stayed up with the family to watch Shawshank Redemption -- great movie -- and went to sleep around 10:30 or 11:00. But then woke up around 4:00. I do feel up to date on all the latest break through products like the Monster 1200 Steam Cleaner, ShamWow towels and, of course, the Back2Life pain relief system. Infomercials are great in the middle of the night.

I have my Doctor Appointments coming up Thursday and Friday. I'm getting more and more anxious as time goes on. Fellow patient Jeff who also had Tonsil Cancer and received identical treatments on the same schedule as I did had his scans a couple of weeks ago. When he went in for his follow up appointments he only got partial CT Results from Dr. Tsue. Dr. Tsue only reviewed the part directly effecting the neck and throat then his oncologist reviewed more complete results including the chest. Point is, it will probably be Friday before I really know any thing.

I don't want to wish my life away or anything, but geez, I'd really like Friday to hurry up and get here. I'm pretty confident my being awake in the middle of the night is related to my anticipation.

Quite the Social Butterfly!

Jenny and I went to dinner tonight with our good friends Liz and Keith. Of course, my version of "dinner" at this point is still ordering a glass of water -- no ice -- and sipping it while everyone else eats. But it's still good to get out and pretend.

We invited them back over to our place to hang out, maybe play some cards. Unfortunately, after we got home I foolishly broke out my new electric warming throw. It's an absolutely marvelous invention. It's an electric blanket but in the size of a throw that you put over you while sitting in a chair and watching T.V. Hey, it's been cold and Mr. No Bodyfat here just needed a few minutes under the throw to warm back up. This, as I'm sure you've already figured out, translated to my being a marvelous host and immediately falling dead asleep. This was about 8:00 I think, though I'm really not sure.

Probably would have happened without the throw as well but I'm pretty sure that sealed the deal. I just get Sooooooo tired still.

Not even sure what time they left but I'm confident L&K are anxious for another night out with the Robinsons. Ugh! And now I'm awake here at 4:00 posting on this site. I think Sophie's sleeping habits are closer to what they're supposed to be than mine are right now. Feels like I might be able to go back to sleep here in a few minutes, though. We'll see.

ixnay on the oodfay

Well completed my CT Scan and my Swallow Study this morning. Nothing to report on the CT Scan at this point. But the swallow study had some surprises.

First, after doing the swallowing she "reviewed the game tapes" with me -- ok, she showed me the video of me swallowing. That's pretty cool by itself.

But that allowed her to show me all the things I'm doing wrong when swallowing now. And there were several. Some were related to swelling that still exists and some were related to muscles that aren't doing what they're supposed to be doing because of pain, the radiation and/or inactivity.

I have a group of exercises I get to start doing several times a day designed to start improving my swallowing and my speech. So if you see me driving and I'm sticking out my tongue or making silly faces, don't laugh, just recognize that I'm doing my exercises.

The biggest surprise, and disappointment, was her recommendation that I NOT eat anything for a couple of weeks at a minimum. Apparently I'm not getting my airway closed off very well when I swallow and she said I'm at pretty high risk for aspirating food.

So my gameplan for trying something every day to get back in the groove of eating and to stimulate my taste buds is now down the drain. I guess I continue on with my feeding tube for the foreseeable future. Bummer.

Gourmet Cliff!

True to my word from yesterday's post, I've decided to try eating something every day just to get the old chew-and-swallow thing working again and to see if I can't stimulate my taste buds.

This morning I ate a scrambled egg and at lunch today I had some applesauce.

Quite an athlete, I'd say!!

Neither the egg nor the sauce went down that well. Don't get me wrong, I got them both down, but it was work. I've seen Tim eat in seconds -- and only a few -- what I ate in minutes but who cares at this point. I ATE!!

So what if neither really tasted that good. So what if I had to wash both down with a lot of water in order to get them down. So what if I got choked a bit during both efforts. It's progress.

Now I'm on for my CT Scan and Swallow Study tomorrow morning. I'm sure today's crash-studying effort will pay dividends in tomorrow's Swallow Test. Yes, I know, they call it a Swallow "study", but I know a test when I see it. And even with today's swallowing historics I'm not sure I'm going to pass tomorrow. In fact, I'm pretty sure I'm NOT going to pass. Although I'm not sure what passing would accomplish.

Oh well, the important thing for the day is I've been reintroduced to food and, while the relationship is a bit strained because of extended separation, I'm confident we'll be able to mend our fences and once again have a mutually enjoyable relationship.

Might take a while, though.

Scan Coming

Well, I have a week of work under my belt. 4-5 hours is about my limit. I was there about 6-1/2 hours last Thursday and it about wore me out. But it's good to be working again and getting out of the house for something other than a Doctor Appointment or Treatment.

We did get my scan and follow up Doctor Appointments scheduled. I have a CT Scan and a Swallow Study on Wednesday (Jan 14) morning. This is the first step in determining if last fall's Hell was successful in getting rid of all the cancer. That's the CT Scan, not the Swallow Study. The Swallow Study is just a test to see how my swallowing is doing. I'm expecting to fail that miserably. But the CT Scan's the important one. I was expecting a PET Scan also but, apparently, you can't do a PET Scan until at least 3-4 months after treatment. Because the body is still healing from the treatment a PET Scan will show false positives until it's finished healing. But a clean CT Scan would be a good start.

Unfortunately I then have to wait over a week to get results of the Scan. I have an appointment with Dr. Tsue, the ENT, on Thursday, Jan 22 and with my Oncologist on Friday, Jan 23. So, by then I'll know the results.

Still not eating anything. I've decided -- just today -- that I HAVE to start trying something every day. Just to get my chewing muscles, my swallowing muscles, and all working and, we've just heard recently, that if you stimulate your taste buds with something they'll recover faster also. I don't know how true that is but it's worth a try. Besides, I might stumble onto some things I can eat comfortably.

I drove myself to work today. Friday night I just said -- what the heck -- and I quit taking pain meds. With those out of my system over the weekend I was free to drive. Tim and I have some negotiating to do as he was pretty comfy with "his own" car at his disposal. But we'll work that out.

The lack of pain meds has gone OK. There's certainly been some mouth/tongue/throat discomfort, though not as much as I was expecting. Probably my biggest impact has been my shoulders. Yes, remember that I had shoulder surgery in late August and had Shingles or something that caused problems with my other shoulder in late October. I guess the pain meds had been masking some of that pain but now it's back. I've still got a fair amount of rehab to do on my right shoulder from surgery that I've procrastinated because of both the cancer treatment and some stupid Insurance restrictions on Physical Therapy. But I'll be getting back in to Therapy soon and hopefully we'll get that taken care of.

Caity left to go back to school yesterday. Kinda emotional. Just her second semester so it's not "the norm" to have her gone yet. Plus Caity's going to miss her new niece that she's pretty partial to and I think she's worried about my scans. But I talked to her this morning after her first two classes and I'm sure she'll do great.

Enough for today. I need to rest so I can go watch Tim's soccer game(s) tonight. I've missed way too much of the kids' stuff the last few months.

Back to Work!!

It's Tuesday now. Two days of work under my belt.

Neither were full days. Both were about 5-hours, arriving late but leaving early to make up for it. I think that's about the right length for a work day right now, though. I'm able to make it through my shortened day without too much problem but, by the time it's over, I'm pretty exhausted. Monday I slept ALMOST the full trip home with Emily as my Chauffeur.

I can't drive yet because of the pain meds. I'm making progress with them but not as fast as I'd like. But I've more than cut them in half from where I was three weeks ago. Probably down to about a third of where I was so we're getting there. Just not fast enough. I want to drive.

Caitlin, Emily and Jenny have been my Chauffeurs, though, so far. Tim also came along for the ride Monday morning with me and Caitlin so it's been a full family affair. Sophie even came with Emily when she was my driver.

No word from the Docs yet on dates for my Scans and follow-up visits. I tried to call them this morning but didn't have any luck finding someone to talk to and left voicemail that hasn't been returned.

Not much progress to report on eating, mouth pain or mucositis. Things are really moving slowly. Even when I think back to how things were last week I still don't see a lot of difference. Energy level is the area I've seemed to progress the most but, with two days of working all the sudden, it's hard to compare that fairly.

Again, I just have to be patient. That's just not my strong suit.

Uneventful Doctor Visits

Visited my Radiation Doc and my Oncologist today for follow-up visits. Both were relatively uneventful. Generally, I'm progressing as they expect me to. Both told me to be patient and let time heal all wounds, literally.

My mouth is still pretty sore, the Mucositis continues to be gross and a pain in the butt, I get choked once or twice a day, I'm still eating near exclusively with my feeding tube and I'm tired most of the time but getting more energy.

My Oncologist said that he actually thinks I'm ahead of the curve on my recovery. A bit better than "average". So, I guess that's good news but it doesn't help my lack of patience. I'm trying to taper my pain meds. Pain meds are the only thing standing between me and driving. So I'm trying to find a balance between getting off pain meds ASAP but avoiding too much discomfort in the process.

We were going to schedule my follow-up scans and a video swallow test today but the people who do the scheduling were out of the office today. So they'll coordinate that on Monday and call me with the schedule for those tests, my follow-up visit with Dr. Tsue to review the results and my follow-up with my Oncologist. These should all be happening the week of January 12 or, possibly, the week of January 19.

I did successfully eat a bowl of tomato soup the other day and a dollop of Mashed Potatoes on New Year's Eve. The tomato soup was made with water instead of my preferred milk and I didn't use any crackers like I would have like to, but it was a start. Took me quite a while to eat a mere bowl of soup and it wasn't my most satisfying meal I've ever had, but it was my first non-feeding tube food in two months.

Sophie's doing well. Quite likely the cutest baby I've ever seen (except for my own kids, of course) and, while we're only 11 days into her life, she really is the best behaved baby I've ever seen. Hardly cries and is easy to settle down if she does cry. She's sleeping well at night. Just a sweet little girl.

I know I sound like a broken record with the update on how I'm feeling. But things just aren't changing that quickly. Certainly not as quickly as I'd like. But, I guess several "updates" in a row with little to no change from the previous is still updating you on where I'm at.

Happy New Year to everyone. We're looking forward to a healthy 2009. Certainly a healthier 2009 than 2008.