What Time is It?

Saturday night/Sunday morning now.

Alice, Ron and Jessica came over this evening. Being the host that I am, I fell asleep in the recliner about 8:00. I woke up about 12:30 with everyone gone and just the family here. Pretty much the norm, unfortunately. Just can hardly stay awake past 8:00 or 9:00 no matter where I am or what's going on around me.

Tonight that's translated into being pretty much awake here at 2:00 am. Sophie happens to be awake also but is eating now and we hope will be asleep again in a few minutes.

Progress continues on the health front. Obviously the fatigue thing still has some work to do. When I'm awake I have more energy than I used to but I'm still pretty tired most of the time.

Mouth pain continues to improve. I'm SLOWLY cutting back on my pain meds. The worst pain occurs when I yawn. Unfortunately that seems to happen quite a bit. Refer to previous paragraph about fatigue.

Mucositis continues to be a problem. I'm ready for this to be done. Very little progress, if any, on this front.

Still not eating anything at all by mouth. I tried some Jello the other day. MILD problems swallowing but the biggest issue is that nothing tastes good. On the more foolish front, I tried a small bite of a small piece of candy yesterday. It was there, it looked really good, so I bit off a small piece. Mistake. It tasted terrible and the pain was pretty fun just trying to do a little bit of chewing and, then, trying to get the chocolate and coconut out of my teeth. Any future food experiments will be on such daring items as jello or oatmeal. Something requiring no chewing whatsoever. Once I have those mastered we'll see about graduating to something requiring a little bit of chewing.

All in all, making progress but, still, not as fast as my impatient self would like. I'm really getting the urge to eat but my taste buds -- not to mention my pain levels -- just aren't ready.

Sophie and Emily are home now and trying to create some routine. Not really there yet but she's only a few days old so there's time.

Christmas Day at the Hospital

Spending Christmas Day at the hospital with Emily and Sophie. I'm feeling pretty decent today. But I'm not the subject of today's post. Today I needed to get a picture posted of the new Granddaughter. Quite a cutie!!

Christmas Eve Update

Well, it's been a few days but -- not my fault this time. For some reason I've been having trouble logging in to the site to post updates. Not sure if the problem was on my end or theirs but it seems to be corrected now and that's good because I have lots to update on.

First, I think I'm making noticeable improvements now. It's not obvious from a day-to-day perspective but I no longer have to look a week into the past to be able to tell differences between how I feel now and how I felt then. I can just look back two or three days and be able to notice differences.

My energy level seems to be going up, though I still seem to crash about 8:00 every evening no matter where I am and no matter what's going on around me. I've amazed myself with what I can sleep through. But during the day I'm able to get up out of my recliner and actually do a few productive things around the house. Still need to sit and take frequent breaks and could still use a mid-day nap, but it's a lot better than it was.

I'm not planning any speeches or important presentations any time soon, but I can talk so much better than I could and with minimal discomfort. Still no lengthy conversations and I still struggle to talk loudly if needed, but it's all about progress.

Mouth pain, particularly my tongue, is still ever present and I'm still suckin' down pain meds at an uncomfortable rate, but I've started backing off on the meds a LITTLE bit and the pain is starting to approach manageable. I ate some jello the other day. It went fine from a pain standpoint but tasted awful so I'm not sure how close we are on the food front. Other than that jello, I'm still 100% feeding tube for food. I still can't swallow any pills -- even my teeny-tiny pain pills -- so I'm not back by any stretch but making progress.

Mucositis is getting better as well. It's still there. I still get gagged/choked occassionally. I still have to carry around my stupid "spit cup" as we call it. But it's no longer a non-stop, disgusting "gag and spit" fest like it has been. I can sit through a dinner -- even at a restaurant -- and discretely manage the problem without ruining everyone's appetite around me. And this one's a big deal for me, personally, because this has been something I've been very self-conscious about.

And, finally, I don't want to confuse issues here in this one blog, but I can't get through an update without mentioning that I'M A GRANDPA!!! That's right, in case you didn't already know it, my 23-year-old daughter was pregnant and, now, is the proud mama of a baby girl. Sophie Layne was born yesterday late afternoon, weighing in at 7 lbs, 3 oz and measuring 19-3/4" long. We have plenty of pictures but none on this computer so I'll get a picture posted later today or tomorrow. Again, don't want to throw too many issues into this one blog but I had to mention this one 'cause it's kinda a big deal.

Have a Merry Christmas and a safe Holiday Season.

Progress

I haven't had any 'break through' days where I wake up and suddenly feel better than I did the day before. But as I sit and think about how I feel today compare to how I remember feeling several days ago, I do think I'm making some progress.

Mouth sores, Mucositis, fatigue, etc. are all still real problems, no doubt, but compared to how I felt last weekend I definitely have more energy and the Mucositis problems not as significant as they were at that time. I'm not running out to eat a hot spicy Mexican meal or anything, but my mouth isn't AS sore as it was last weekend. I don't want to spend hours chatting with anyone, but I can carry on a moderate length phone conversation now without TOO much difficulty.

So, it's coming in small steps that are hardly recognizable from day to day, but over the course of several days I can start to see that things are slowly getting better.

I saw the P.A. at the Oncologist's office on Thursday. She said things seemed "normal" to her. I don't go in to see any doctors again until January 2. On that day I'll see the Radiation Doctor and the Oncologist. At the Oncologist appointment I'll schedule my scans to see if all this treatment was successful. The scans will happen in mid-January and I'll have a follow-up appointment with one of the Docs shortly afterward to review the results.

So, two weeks until my next appointment and four-ish weeks until I have my scans. Looks like it will mostly be just waiting and letting time heal me for the short term. Hopefully the progress will continue. Shoot, I wouldn't even mind if it sped up a bit.

Plodding Along

Dang, it's suddenly been a week since my last post. Not sure why but such is life.

Progress is MUCH slower than I was hoping for now that treatments have ended. I saw my Oncologist last Wednesday for a weekly check-in type visit. They said I look to be doing as expected and I need to temper my optimism a bit. Say what!?! I came in thinking that within a couple of weeks of ending treatments that I'd start to see some meaningful progress. They said that COULD happen but it could also be 3-4 more weeks before I even BEGIN to see any progress at all.

Current status, though. I continue to be extremely tired, though that's the one area I feel I have made a little bit of progress. The sores in my mouth and throat and, in particular, on my tongue are just too painful to describe. I've had a bit of an internal philosophical debate over pain medication. I'm generally not a big fan of huge volumes of medications but, I'll tell you, I'm taking a lot of pain meds and it's still pretty sore. The doc just tells me to keep bumping it up until I'm comfortable (within reason) but the level it would take to get there is just beyond my comfort level on other fronts -- not to mention, then, the side effects of the pain meds start kicking in.

Talking is difficult. The sore throat makes it hard in the first place but, more than that, the sores on my tongue make it difficult to enunciate. I know it's a struggle for those around me to understand me. Phone conversations are a whole problem of their own.

Mucositis continues to hang around with all its lovely symptoms. Pretty gross and disgusting. Enough said on that front.

Like I said, fatigue levels are incrementally better, I think. Still spending lots of time in my recliner but I did work up the energy to go to the basement over the weekend and watch Jenny and a couple of friends work on some stuff on our basement. You may laugh, but that really is an improvement over my previous energy level.

I have my weekly appointment in the Oncologist's office Wednesday. Hopefully they'll be a bit more optimistic this week than they were last. I'm really hoping to dip into something at the Christmas Dinner Table. Just nine days away, though, and today I can't imagine putting anything at all into my mouth.

Week's Progressing

Tuesday night, now. The week's progressing but I'm not sure I am.

Ed and Julie invited us over for Taco's and a Movie last night. I had no plans at all for the Tacos, of course. That was Tim's department. But I did plan to visit a bit and watch a movie, enjoying the chance to get out of the house. I shouldn't have bothered. I felt absolutely horrible all evening and just crashed in their recliner instead of my own, coughing, gagging and spitting for their enjoyment instead of just my own families.

I am feeling incrementally better today. Actually, my mouth, throat and the mucositis is probably worse today, but my body doesn't feel quite as overall crappy. I've had glimpses of energy. Played a few rounds of Wii Golf with my mother-in-law and got her addicted to the world of Nintendo. I think she's anxious for a rematch tomorrow.

Sleep's been pretty scant just because of the mouth pain and the coughing and gagging. I'll nod off for 20-30 minutes then wake up coughing and/or gagging. Spend a few minutes getting things under control, nod off again, and continue the routine until it's time to get up in the morning. Not exactly a restful night.

My hands and feet are making progress. In fact, my feet are fine now. My hands don't hurt quite as bad now but they're still pretty sore. They're adding in itching as a symptom, though. I not sure how you "scratch" painful skin but I'm trying to figure it out. Tons and tons of lotion.

Enough complaining for the day. I know I sound like a broken record but I'm trying to get something down to document how this is unfolding -- for my own future reference as well as your current info. Fingers crossed for accelerated progress over the next few days.

Over but it Ain't Over

Got my pump off yesterday for the last time. So all the logistics of treatments and chemo are done. But right now I feel a long way from celebrating and recognize that we've still got a long way to go.

Last night I spent the evening vegitating in the recliner and just kept feeling worse as the evening went on. I'm sure part of that had to do with Mizzou's abysmal performance in the Big 12 Championship Game, but most of all I just plain don't feel good. The Doctor called as a follow-up from my visit last week to tell me my culture tested positive for a Staph Infection. Not sure how much that's contributing but I just feel bad. In addition my mouth and throat are doing their on-going thing and this mucositis thing is not only disgusting but painful and a regular source of difficult gagging. My hands have decided again, to swell, peel, get red and to hurt like heck. Only this time my feet have joined in on the fun so walking is almost as much fun as buttoning my shirt or opening a prescription bottle.

No real Nausea. I've had a little vomiting but I think it was because of coughing and gagging rather than nausea. We're keeping an eye on it, though, and won't mess around it if we see any sign of nausea that might be getting me into trouble.

Feeling incrementally better today. I was hoping for more progress but I know I'm going to have to be patient.

Last Day of Radiation!!

Today's my last day of Radiation Treatment. I've already gone to my morning session so I have just the afternoon session remaining. Tomorrow, then, I get my 5FU Pump off for the last time then I'll be done with treatment.

No dancing or celebrating going on, though. Since my good day I had on Tuesday, things have gone downhill. There's been little nausea and no vomiting, though, so I have that to be thankful for. But fatigue levels are way high, my mouth, tongue and throat are plenty sore and I'll not get into the grossness involved with everything that's going on.

Had an Appointment yesterday with the Physician's Assistant at the Oncologist's office. She spent a good bit of time trying to manage my expectations for the coming weeks. Told me not to expect to get feeling much better too soon. She said it COULD be 4-5 weeks before I make significant progress on the feeling better front. Geez, I hope not. I've been counting on eating SOMETHING at Christmas Dinner. At least Mashed Potatoes and Gravy or something like that.

I guess time will tell.

Wow, Good Day Today

Not sure where this came from but I'm feeling better today than I have in two or three weeks. Certainly my mouth, tongue, throat and gums feel pretty sore, but I don't think quite as bad as they have been. The congestion and gagging that's caused me so many problems and grossed everyone around me out is doing OK today. But most of all, I have a little energy today and my overall body doesn't really feel sick like it has the last few weeks.

Man, all the crappy days really make me appreciate a day like today.

Tomorrow is my "normal" day to start feeling the effects of the chemo drugs from this week's treatment. If you recall, last cycle it kicked in on Wednesday like it always does but really hit me hard and went downhill from there, resulting in a Hospital stay over the weekend. Planning to do everything to avoid that this time around. So if it starts rearing it's ugly head in a serious way like it did last time, Jenny and I will waste no time getting my little behind down to the Cancer Center for some fluids and I.V. Nausea Drugs.

But that's tomorrow's problem. Today, I'm just enjoying the day.

Yet another confusing Monday

Monday is the day I go to the Cancer Center to get my 5FU pump installed then go to the Radiation Center for a Radiation Treatment. I then return to the Cancer Center to receive a different Chemo drug via I.V. drip and from there I'm ready to do whatever I want until my 3:45 Radiation treatment. Sometimes we go home, sometimes we go to the Plaza, whatever. It depends on how I'm feeling and what the weather looks like.

But EVERY Monday -- and this was my fifth and final Monday -- there's be some kind of screw-up. On nurse thought I was supposed to receive the Pump AND the chemo I.V. drop before going to my 1st radiation treatment of the day. Another time they were running a little behind so they thought we should just head on down for Radiation then come back and they'd do the pump and the I.V. Chemo then. Stuff like that. But this Monday took the cake.

We arrived at our usual 7:30 only to find they didn't have me on the schedule at all. I was nowhere to be found. But to do anything that morning they needed two things -- an open bed and orders from the doctor. They weren't awash in optimism on either front but I waited. About 8:45 they instructed us to go on over the Radiation for my first treatment then come back and we'd get all the chemo drugs going between Radiation treatments. Dr. Williamson said we'd ignore, for one treatment, that the 5FU pump is SUPPOSED to be installed before any radiation treatments because it tends to enhance the effectiveness.

When we returned from Radiation -- which was a half-hour late themselves -- and our weekly Monday Morning chat with Dr. Wang from Radiation -- it was about 11:15. We go into a room after a few minutes, the Nurse Assistant came in and took Vital Signs. Finally, about noon, a nurse came in to take some blood to send down to the lab. This is something they COULD have done and certainly should have done in the morning before my first treatment. Because they have to analyze the labwork before they can do anything with the I.V. drugs. They need to make sure that, chemically, my body is able to handle the "invasion" of the chemo drugs.

About 1:30 they had the lab report. Lots of stuff is lower than the "normal" range but the decision is that it's OK so off we go. 30-minutes of pre-meds to get me ready, an injection of Benadryl to help with Nausea -- and to zonk me out -- then, finally, the 30-minute I.V. drip of the Chemo Drugs themselves. All the Normal Routine, just on a way different schedule.

You can run the numbers, that would, on paper finish us up about 2:30. With the normal starts and stops and the time to switch and re-hook the backs, we were actually done about 2:45. With no time to go home and my still feeling pretty groggy from the Benedryl, they told we could just stay for and extra 45-minutes and I can crash in their recliner while Pat reads her steamy romance novel then just get up and go straight to radiation for my 3:45 appointment.

So that was the plan. We went to radiation, they were relatively on schedule, and by 4:10 we finally ended to day and headed home.

We did talk to the folks in Dr. Williamson's office to see what could have happened. Apparently they schedule all these appointments at the very beginning of treatment. Infact, in her book, she showed Pat (Pat went to talk while I was getting treatments) where the appoint for this morning was booked back on October 6th, my first day of treatment. However, to keep those appointments, they must confirm the the week before.

Well, the week before, when I was supposed to have my appointment with Dr. Williamson's office, I was in the Hospital. Since I was getting lab-work done there, I was getting a thorough examination, even saw Dr. Williamson himself for a brief period, no one saw a need to have an additional appointment with Dr. Williamson in the next day or two before Thanksgiving. That was A.O.K. with me. The only thing no one thought about, apparently, is that visit is normally when they go through my upcoming schedule and confirm any pending appointments that need it. So I was out of sight and out of mind and no one confirmed to appointments so they were dropped.

What a pain. In general, we've be EXTREMELY pleased with the whole treatment process. The facilities, the people, the competent people, etc., etc. all the way down the line. But Monday's are a consistent problem and I think we're go need to have a heart to heart with them.

But, this is the LAST TIME we'll need to deal with a Monday!! From here forward, I get to sleep in -- to the extent I can -- do some work from home as capable then, before too long, go back to work as a productive member of society. I certainly WON'T be farting around with who's going where, when are they going and what's gonna happen when they get there like I have been the last several weeks.

Pill swallowing is getting more and more difficult. I physically can't swallow my Chemo pill. It's a pretty good sized capsule but gets stuck at top of my throat. I can still breath but I can feel it there and it just won't go down. Eventually I'll cough it back up and have to spit it out. A similar thing happens with a couple of other pills. Both are smaller than the Hydrea and are, apparently, right on the border of pill sizes I can/can't swallow. Everything else is small than these two and they all go down well while these two pills are a crap shoot. Sometimes they go down, about half the time they get stuck like the hydrea.

So, for the Hydrea capsules they told us we can break open the capsule, disolve the contents in warm water then take it via the feeding tube. So, I've been doing that with the Hydrea. Unfortunately the other two have time-release features that won't allow that so I'm just continuing to take those by mouth and doing my best. Fortunately neither are crisis if I can't get full two pills down every morning and evening. So I just do what I can.

This being my last week of treatment means, also, that it's December already. Where has time gone? We borrowed a small Christmas tree from my Brother. My little nest with my recliner, TV Tray with all my easily accessible books, puzzle books, bills to review, iPod, electronic yatzee, etc., etc. is right by my recliner. And there's no other logical place to move all this without excluding me to some remote corner of the basement or something like that. Unfortunately my nest location is the normal Christmas Tree location. So, we pondered the situation and Jenny decided I should keep my nest and we'll look for alternatives for the tree. Low and behold Ed and Julie came through with a pretty decent looking, just smaller tree that will work quit well. So one crisis solved. Remaining Christmas Decorating is going to be a challenge. Long story on that and we won't get into it here.

I hope everyone had a great and safe Thanksgiving break last week and I'll talk to you soon.

P.S. - Wow, that wound up much longer than expected. Sorry.