Update June 2010

Just a quick update.

I saw Dr. Mundy last week for a follow-up, and everything looked really good. I’ve scheduled an appointment with Dr. Holland for August, and a CT scan for the end of November. I should meet with Dr. Mundy in early December, but I’m sure he’ll call me with the results before our appointment.

So my next update should be in August.

(Oh…and I now have lower dentures. WOOT!)

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It’s like exhaling a breath you didn’t know you were holding

My latest CT was last Friday (I had seen Dr. Mundy the day before), and I got the news today that it was clear! Man. I’m exhausted. :)

I know I don’t update this blog often, but that’s a good thing. A REALLY good thing.

My visit with Dr. Mundy was completely uneventful, and he asked that I set up a follow-up appointment for six months. He also said if this last scan came back clear that we’d move to a once a year scan.

So it’s 1 1/2 years out from my last radiation treatment, and this is really beyond excellent news, because after the first year, the chances of this cancer returning go down dramatically. To something like 30%. So, it is VERY good news.

YYYYYYYEEEEEEEEEEESSSSSSSS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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One year and it’s clear!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I had my one year anniversary CT scan on Wednesday, and Fentress called just now to let me know that the results are CLEAR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

WWWWWWOOOOOOOOOOOOOOOOOOOOOTTTTTTTTTT!!!!!!!!!!!!!!!!!!!!!!!

While there will remain a chance of it coming back over the next four years, the fact it hasn’t shown back up within the first year is really outstanding. Now the chance of it recurring each year goes down. Now we’re at about a 30% chance of it returning, and that’s a hell of an improvement over where I would have been without radiation.

I am SOOOOOOOOOOOOOOOO relieved!

As far as the side effects go, I still have some residual taste problems. Those are slowly but surely dissipating. Swallowing really isn’t a problem except that I have a chronic case of dry mouth and that, coupled with no lower teeth still, can cause some trouble. I refuse to eat out still, but that’s a small price to pay.

My energy level still isn’t 100%, but I bounce back pretty fast now (generally within a few hours) if I overdo it, so I suspect that by this winter I’ll be back to normal there.

Anyway, everything is trucking right along and getting that all clear was the most outstanding news I think I’ve ever had. Randall and I are going to go get one of those really decadent, calorie- and fat laden sundaes from Baskin Robbins to celebrate the good news.

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Second CT Scan is Clear!!

YYYYYYYYEEEEEEEESSSSSSSSSSSSSSSS!!!!!!!!!!!!!

Just got back from my follow-up appointment with Dr. Mundy and the CT scan looks good. Very, very cool.

HUGE relief for both Randall and me, as everyone can imagine.

That also means I’m free now to plan my holiday stuff and painting projects and closet cleaning. And…and…and…

I’ve been putting off making any plans at all just in case the scan didn’t look good and chemo was in my future. Fortunately it did look good and I get to keep my hair, so life is much better.

There is a follow-up consultation with Dr. Mundy at the end of January, and three months after that I’ll have another CT scan. So, I can dance this worry dance again, but not until the end of April or so.

I’ve got a follow up with my ENT on Thursday at 1:00, and I’m sure I’ll post a quick follow-up on that, too.

So until Thursday….

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October 17 Update

I haven’t posted anything really in a couple of months since there’s really not been much to say, but since I’ve got a follow-up CT scan next week, I thought now would be a good time.

Next Tuesday at 1:30 is my second CT scan since ending radiation treatment in April. And I’ll be honest, both Randall and I are nervous about it. I guess we’ll always feel that way through the next several years when I have these done, but as Dr. Lehr mentioned to us earlier in the year, it’s the first year after radiation that is critical. I’ll have the whole five years until clear thing going, too, but it’s this first year you really have to watch with this particular type of cancer. So sweaty palms on this one. And, sadly, I won’t have any results on it until the following Tuesday when we see Dr. Mundy. So seven days of not knowing and worrying and waiting. I’ll post once I do know what the results are.

On to more mundane stuff.

Eating and drinking is fine so far as pain goes. That’s history now, and I am SOOOOO glad. I still have problems with taste and it’s hard to know what something will taste like the first time. Chocolate is now OK and so are apples. Milk tastes awful…quite salty. And I do have some problems distinguishing spices in things (and salt), so Randall gets to help there. His sense of taste and knowing what to put into food to make it right isn’t what mine was, but relying on mine right now can be dicey.

So taste is doing better and I expect will continue to over the next several months.

Swallowing/throat pain isn’t an issue unless I try to swallow too large a piece of food. That’s really teeth related and won’t be fixed until late next spring when I can get lower dentures.

Dry mouth is still a really big problem. And Dr. Mundy has led me to believe it probably always will be. He wasn’t too positive about the salivary glands regenerating themselves, but it could happen at least somewhat. Until then, I take water with me wherever I go. The downside, of course, is that what goes in must come out. As a consequence, I’m generally a good person to ask where the bathroom is. LOL

Eating is still problematic because of that, too. Boneless skinless chicken breasts and pork chops can be impossible. I’m taking advantage of brining things before cooking them. I know it adds sodium to the meat, but there’s just not much I can do about it. I’ve got to have more moisture in some of the meats before I can eat them. Even braising some of them isn’t enough. So brining is the way I have to go.

Fatigue is still a problem and will be for several more months.

My painting projects are more or less on hold until things get better. We’re tackling painting the outside of the house (have the paint!), but we’re going to start in the back of the house and take it slow. Since we’ve got wooden screens, we’ll take them down and paint them in the garage…one at a time…over the winter. There are five windows there, so that will probably keep us busy and if we run out of windows in back, there are two on the side of the house that will be next. So I suspect we can stay busy over the winter because I do have to take it slow.

Meanwhile other stuff gets strung out longer than normal. Never good at pacing myself, this can be a real challenge, but since I don’t know until after I sit down for a couple of hours that I’ve done too much, I have to be preemptive about this. Otherwise, if I overdo it, I can be out of action for three or four days while I recover my strength. This, too, shall pass, but until it does, I’ve got to watch how much I take on.

That’s really about all for now. Unless something interesting happens, next Tuesday with the CT scan, I’ll skip posting about it. I will, though, post an update on the findings the following week which should be the 28th. I’ve also got a follow-up with my ENT on that Thursday, so it’s possible it will be a two post week.

Everyone have a safe weekend!

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The Last Lecture (mini-review)

The Last Lecture (mini-book review)

I approached this book with some trepidation. I’d been on the waiting list for it at the Waco library for weeks, and when I got it in to read last week, I promptly sat it on the dresser, picked up another book, and looked sideways at it until three days ago. I was afraid of what I’d read, even though I’d seen Mr. Pausch on Oprah and various clips on the internet. I just wasn’t sure if I could face this.

First up, my cancer was nothing like Mr. Pausch’s. His was terminal pancreatic cancer. Mine was early Stage III oral squamous cell carcinoma. The difference was blinding. Randy Pausch picked up his pen and put it to paper knowing he was dying. I picked up his book knowing I was going to live. That’s a pretty humbling thing when it comes right down to it.

Mr. Pausch’s book is small and rather short. Flipping through it quickly I noticed the individual chapters were, for the most part quite short. Very anecdotal really. And there were some small, obviously personal, photos scattered throughout…not lumped in the middle like so many photo sections in non-fiction works.

When I finally picked up the book three days ago, I was immediately engaged. My husband and I read in bed each night before turning out the light, and I found this book hard to put down. From the beginning, Mr. Pausch invites you in through the front door and welcomes you into his life. That is what stays with you from beginning to end. You are a part of his world. His story. It is personal and engaging. Often times downright funny, and I found myself literally laughing out loud in places and reading the occasional sentence to my husband.

Ultimately, he wrote this book for his family. Specifically for his young children who will grow up not knowing who their father really was. From this book, they’re going to have a good idea. I know I felt like I did, even though I only had a couple of hundred pages to spend with him. And, if they’re like me, they’ll walk away with a better understanding not only of him, but also of themselves.

Mr. Pausch was a hell of a guy with one hell of an attitude. He made me laugh a lot over a few days, and yes, I shed a few tears when the last couple of chapters were winding down and, I knew, so was he. Overall, though, it’s a book that will make you laugh a great deal and cry maybe, just a very little. I highly recommend this for cancer patients as well as family, friends and caregivers.

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End of August update

Another update for another month. :)

Saw Dr. Mundy today for my late August follow-up.

He poked around and prodded and asked me a few questions and said everything looks good. Good news, of course!

Anyway, he has scheduled my second and final (for this year, we hope!) CT scan for October 21. I’ll see him again on October 28 for the reading and what should be the last follow-up appointment for the year unless the CT scan shows something. Also, I’ve rescheduled my appointment with Dr. Holland since it was for October 16, and I know he will want to see the scan results. So I see him on October 30.

That means I should be good to go until nearly Halloween.

Everything else is cruising right along. My mouth is still very, very dry (Dr. Mundy seems to think that will be permanent; Dr. Holland seems to think there will be some improvement over time), but I can work around a lot of that. The swallowing is no longer painful, and that was the real problem. My weight has stabilized now, too. There’s a five pound window, basically, that I swing in…just depends on the time of day I step on the scale and how much water I’ve had (or Blue Bell ice cream *g*).

Fatigue is still an issue, but I knew it would be. Dr. Mundy mentioned today that a person generally doesn’t start to see much improvement there until about six months after the treatments stop. That means that I have until October. Course, that’s the soonest to expect it, and I doubt I’ll meet that timeframe. I figure it will be spring, really, but I’m managing to cope though it’s still really easy to over do it because I don’t know I’ve wiped myself out until I’ve sat down for a couple of hours. I did that last week polishing furniture, and had four or five days where I couldn’t do a thing because I was just exhausted. I’ve never been worth a damn when it comes to pacing myself, so it’s not surprising.

Anyway, that’s where we are. The next big “test” will come at the end of October. That will be the 6th month since radiation stopped, and we know the biggest danger of return for this type of cancer is in the first year. I expect I’ll be blessed with a good case of nerves about then.

Everyone have a safe and wonderful Labor Day!

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CHOCOLATE!!!!!

YES!!!!!!!!!!!!!!

For the first time since sometime in February, I’m tasting chocolate and it’s tasting GOOD!

Well, at least the Duncan Hine’s Devil’s Food Cake I made today is. It was supposed to be used for an ice cream cake. Bundt cake pan. Right. Can you say, “Stick.” I knew you could.

So on to plan B. Eat it plain now and with some mint chocolate chip ice cream later. And it is tasting JUST FINE. Having chocolate taste like shit was enough to make me want to cry. Chocolate is the food of the gods and me. And I was heap might pissed when the chocolate gods got my portion. While I know I’ll still have to be cautious on the type of chocolate I eat until my tastebuds come completely back, it looks like the deep, dark kind is good. WOOT!

Banana made a come back a few weeks ago and apple is turning the corner. Happiness is when all three can make it back on the menu.

So happy. :)

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Update for mid-July

I haven’t made any recent updates since there really wasn’t anything new going on.

Mainly for the last several weeks, I’ve been trying new foods. Some work. Some don’t. Some sort of work, but I want to try them again soon. The mouth is slowly recovering from the radiation. It’s still very easily irritated, so I’m having to be quite cautious of how spicy a dish is. And spicy doesn’t necessarily mean hot…sometimes it’s just the type of spice that irritates the membranes of my mouth. I am noticing, though, that some of this is dwindling. As time passes, it should do nothing but improve.

I got to see my new doctor today. This is the Ear, Nose, Throat doctor who replaced Dr. Lehr. He’s actually my stepmother’s ENT, too, and I know she likes him. Dr. Holland is who I’m now seeing.

He poked around (gonna have Pokey Mouth a bit tomorrow, I’m sure), and pronounced me good to go. Even a ridge that’s appeared in the last 10-14 days on the inside of my left cheek is nothing to worry about. I didn’t think it was because it does disappear when I wear a mouthguard and it never hurts. Still, with my history, I wanted to be doubly careful. It’s simply a response to me irritating it by biting it. It’s on the same side I sleep on and runs in a line from the back of my jaw up alongside my teeth, and then stops where the gum curves around to come in front. It’s also the side I sleep on.

So yeah. Keep an eye on it because it’s not a good idea to have a constant irritation, but unless something changes, it’s nothing to worry about.

Dr. Holland has prescribed a drug to help increase my saliva production. He said they’re hit or miss, but to try this one and see if it works. If it doesn’t, I’ll come off it and try it again in a few weeks.

I probably won’t be updating too much. Every few weeks, probably. I have my next appointment with Dr. Mundy in late August. Dr. Holland has put me on a three month follow-up schedule…he sees me again in mid-October. He did tell me they will schedule one more CT scan before the end of the year…pretty much what we had figured.

So I’ll update again before my appointment in late August and then again after I see Dr. Mundy.

I hope everyone has a fun and safe summer! As for me…I’m still plotting to live forever and take over the world, and my cancer survivorship is playing along nicely. :)

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Update for late June

It’s been a few weeks, so I figured a bit of an update was due.

Things are moving along pretty well. Currently, I’m still working on getting my strength up. I still tire easily, but I’m getting out and going places and pushing myself some. I don’t want to over do it, but I also think that if I don’t push, I’ll never get back up to speed.

Right now, we’re trying to get me out every couple of days to a large store (say a Walmart or Sam’s or Lowe’s) and let me walk around a lot. Tires me out. Hell, it wears me out, but I refuse to give in on this. We try to do it in the afternoon so I won’t be tempted to take a nap.

Sleeping can still be an issue. I’m making liberal use of valerian. It doesn’t work as well as benedryl, but it also doesn’t dry me out. With my salivary glands I have to really watch how many allergy pills I take…particularly at night when I’m not able to drink water. And yes, we’re talking massive quantities here…I drink way over 100 ounces a day…keep in mind the old 8 glasses of 8 ounces of water a day and you’ll see I’m far past that.

I’m not yet on my exercise bike…as much as I’d love to be. Totally unrelated to my cancer is a back problem centered in the lower area of my back. Part of this I come by very naturally (Thanks, Dad!) and have dealt with that since I was a pre-teen and another part of it is something that showed up about four years ago. It seems to be related to the sciatic nerve though it doesn’t have a lot of the symptoms (like extreme pain), but it does keep me from lifting my leg when I walk. It also makes peddling a bike almost impossible because my foot falls off the pedal. We’ve been looking locally for bicycle toe clips but we’re having no joy. Looks like I’m going to have to order them and hope I get the right kind for this exercise bike.

So, since the exercise bike is out, cleaning the house is in. And let me tell you, it’s a bitch. Pretty much all serious dusting stopped once I got sick. I’d run around occasionally with a feather duster stuck up my ass, but the real dusting with a rag just didn’t happen. Well, it’s happening now and it’s just awful. A friend of mine used to say that dust was a protective coating for fine furniture. I must say the antiques look mighty damn good in their new clothes. :)

Physical stuff other than strength is doing well. The really painful spot in my throat is pretty much gone. I do still have some trouble swallowing, and I do still have a sore throat off and on, but I suspect a whole lot of that is related to my allergies and the dry mouth.

The lack of saliva is still a problem though I am learning to compensate. You don’t necessarily want to watch me eat, but I am getting better coping with it. I’m hoping that as time goes on the dry mouth will lessen. I honestly don’t know if it will or how much if it’s only partial. Time will tell.

My tastebuds are slowly returning. I’m noticing that banana is tasting better. Apple still sucks. Chocolate is improving slightly…it’s weird how it’s working. I’ve got some Dutch Chocolate Blue Bell here that I nibble on, and the first two or three bites still make me screw up my eyes. Once I’m past that, though, it seems to taste OK. Does that hold true for other kinds of chocolate? I don’t know. Right now I’m only working with pint flavors and trying to keep from getting too exotic. Maybe in another week I’ll broaden my test.

Overall, though, the menu choices have really improved. I’m still losing weight, but not a lot. I’ve dropped the Ensure for the most part and now really only use it if I forget to eat (like this morning). We have had hamburgers the last couple of days, and I’ve actually been able to take small bites out of mine. Granted it’s just bread, meat and cheese, but it’s working. We had frozen pizza Saturday and I can manage all but the ends. The sauce was almost too spicy, though, and that is the one thing I’m really having to watch. It’s amazing how much my mouth is sensitive to spices (and not just the savory ones). I suspect as the effects from the radiation disappear, that will slowly go away, too.

Also, since the taste and eating experiences are improving, I’m branching out in my cooking again. I find boneless/skinless chicken breasts are a problem because they taste dry (they really aren’t, Randall tells me, but I don’t believe him *g*), dark meat tastes fine, though. I’m cool with ground lamb and beef, so that’s going well. This Sunday will be some cranberry-chili pork chops. I’ll see how I do with pork, and keep my fingers crossed that the cranberry chutney that I made and froze a few weeks ago is tame enough for me to eat. Toss in some canned diced chilies and it will be a good test.

I’m also trying to get some soup making done, though I have to remember to pace myself. I do marathons, and I’m just not able to do that yet. Right now, I’ve got a list of seven to make, and I’ve made three (One is a really good Beef Balsamic Sun-dried Tomato Chili…I’m really happy with this one. Anytime I can get a new soup right the first time I put it together, I’m a happy girl.) So, 4 more to go.

The other new goodie in my life is a Kitchen Aid 5 Qt Artisan stand mixer that my dad and stepmom gave me for an early b-day present. And yes, it works just fine. *grin* I’ll be doing some kitchen changes to make room for it because it’s heavy enough that you don’t want to move it from place to place, so a metal cart purchase is in the works. Randall has pronounced the mixer a wonderful addition (cui bono, anyone? LOL) and has happily joined in the rolling cart hunt with me.

Anyway, that’s where we are. Once I get to meet my new ENT, I’ll be updating again. It will be a few weeks unless I make some great strides here and want to report in.

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