Another Round Down

Finished up all my follow-up appointments for this round with an Oncologist visit on Wednesday and an appointment with the ENT Oncologist on Thursday. Both went well with no surprises to report. That's a good thing.

Dr. Williamson (Oncologist) did give me a little more info on prognosis and life expectancy that I posted about a couple of months ago, though. Not specific numbers but generalities.

With a year and five clean scans behind me he said the prognosis is "much improved" over the initial survival rate they gave me before treatment started. He said each year that goes by without incident the prognosis goes up pretty significantly. While not unheard of, he said it's rare for the cancer to recur after two years of clean scans. Again, no specific statistics but encouraging generalities.

On the life expectancy after a successful 5-years of scans question, he said cancer survivors do have increased risk of contracting other cancers compared to the general population. In my case, lung cancer or esophageal cancer would be the highest risk. The drugs and the radiation do create a somewhat increased risk of heart problems but, overall, he said life expectancy after successful treatment is only slightly reduced from the general population.

So, good news on both fronts.

I now have a follow up with Dr. Tsue (ENT Oncologist) at the end of April then nothing else until July when I'll have my next round of scans and follow-up appointments with everyone. My goal is to get things stretched out far enough that when I go in they don't recognize me and pull out my chart before I check in. Non-recognition, in this case, would be a positive thing.

I'll likely stretch out my postings as well so I can do what I can to get out of Cancer mode and back into normal population mode. Shouldn't be much to report for quite a while any way.

I got a nice little surprise this morning. I had my latest round of scans Monday morning. My appointment with the Oncologist to go over the results was scheduled for Wednesday but had to be moved to next week because of a business trip. But this morning I had a follow-up with the Radiation Doc and he jumped right in and went over my scan results so I didn't have to wait until next week after all.

Scans were clean. Still Cancer Free.

I think I now go to 6-month cycles for my scans but I do have to wait for next week's Oncologist appointment to confirm that.

I finished several of the "Vital Stim" treatments I mentioned in December. That's electrical stimulation to improve swallowing. I've seen incremental improvement there but not wholesale improvement by any stretch. I have a Video Swallow Study January 19th that will gauge my improvement a little more scientifically than "Cliff's opinion", but I'm expecting the conclusion to be "Oh well, we tried".

Things are going well in general. Struggling to stay warm and to keep my driveway free of snow, but I feel good. Haven't gained any weight back and I still have a limited repertoire at the dinner table, but other than that all's well.

I hope everyone had a good and safe holiday season.

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 . . .