Just one more

Oh, happy day!! I have 1 more radiation to go, and then the Radiation Completion Dance of Joy can begin. Have I mentioned that I hate radiation? I know it’s a love/hate relationship—after all, it IS helping to make me well—and also trying to kill me. It makes me incredibly tired. It makes the burn on my back sting, ache, and itch like a %$#^. It makes swallowing difficult. But with only 1 more to go, I’m confident that I’m going to survive this battle, although for a while there, I wasn’t so sure. Weeks 3 and 4 were especially hard, and I was really struggling. The original plan was to have 30 treatments, and I will end up with 36. I don’t know why, maybe they just like to see me squirm. (After giving this a little thought, it occurred to me that maybe the tumor was stubborn and didn’t shrink fast enough, or maybe the lymph nodes needed a few more zaps than originally planned. Doesn’t matter. Once again, I’m following the doctors on blind faith, since their medical degrees are probably more up to date than mine.)

Despite the radiation, I’m not feeling any worse now than I was a week ago, which surprises me some. I thought that I’d be feeling more and more fatigued all the time, a little worse every day until the radiation was over. It seems that I have reached a “fatigue plateau” and just stayed there. Hey, I’m not complaining at all, this level of fatigue is mostly tolerable. In fact, some days I have a surprising amount of energy and can do things like walk the dog and pay the bills (not simultaneously). Napping during the day is now a rarity, instead of an everyday occurrence.

Earlier this week, I cooked dinner (first time in weeks!) and we had real food. Yes. I could eat the shrimp, green beans and the bread without much pain, but the potato…well, there’s one in every crowd, I guess. In these last few days, I’ve noticed that I can eat more things with less pain than last week. YEEHAA! Soon, I’ll be off soft food and can make up for all this lost time! (Just after I wrote the previous line, I was having dinner, and bit down on something hard. Yes, it’s another cosmic joke on me: I’ve broken a tooth, all the way to the gumline; it feels like about ½ of the tooth is gone. And it’s a holiday weekend. Of course.)


Tooth notwithstanding, I feel pretty good. Because I feel as good as I do, I know that the good thoughts, prayers and the get-well vibes that I’ve received are definitely working. Without them, I’d be a skinnier and even more lethargic mess. Thanks for doing what y’all do.  ¶ 7:00 AM 1 comments

  Random thoughts and good news

No news today, there's just some things running through what's left of my mind. Here's my status on:

Medicine: It seems that every medicine I took made a problem that it took another medicine to fix, so I quit taking them. All I take is children’s ibuprofen. It’s a wonder drug, no doubt. Tastes awful, but keeps me reasonably pain free, and for some reason, stops my runny nose and cough.

Working: Yes, if I can get out of bed, I go to work. It’s part of not letting the beast win. I work half a day, say good bye to my co-workers, and come home and rest for the remainder of the day.

Rest: I spend considerable time on the couch, and in a chair. Some days I am very tired, other days, I’m just “regular” tired. I go to bed around 9 p.m., and rarely sleep through the night. I stay in bed, though; there’s a good chance that if I’m lying down, I’ll go back to sleep. And I usually do.

Being tired: I’m always tired, just varying degrees of what is tolerable. I can sit for hours and be Ok, but standing or walking around just wipes me out. When I’ve been moving around too much, I start to cough. Likewise, when I’ve been talking too much, I start to lose my breath while talking. That happens a lot.

Housework: I try to get one thing done per day, and most days that works pretty well. I can manage to do a load of laundry every couple of days, I load the dishwasher now and then, and once in a while I vacuum. But not often. My boys help out considerably, although sometimes I have to catch them first. I have a neighbor who cleans my kitchen and bathrooms on a regular basis, and that makes me happy.

I have good news!

The good news: My hair is coming back nicely.
The bad news: So is my mustache.

The good news: My taste buds are coming back.
The bad news: I can eat only soft, bland, room temperature foods.

The good news: I don’t feel bad from the cancer anymore!
The bad news: The treatments may very well kill me.

The good news: The boys are doing more of the cleaning.
The bad news: It’s better than mine.

The good news: I’m finally at a weight that I really like.
The bad news: It’s only temporary.

The good news: Today is my last chemo until after surgery!
The bad news: I still get chemo after surgery.

The good news: My support system is alive and well.
The bad news: I can’t thank them enough for all they do for me.  ¶ 8:13 AM 2 comments

  A better week!

I know, I know, no posting in a week. There’s just no news. I’ve been working ½ days, getting radiation every day, resting often, and letting a lot of things slide. I do have to say that this week has been somewhat better than last week, treatment-wise, that is. Chemo Monday went much, MUCH better this week, and next week I’ll learn if I have one more chemo or if I’m through with it for this phase. I have 6 more radiations to go, if they don’t kill me, and then I’m through with those. Permanently, I hope. The radiation burn on my back is really looking nasty now. It’s still 6 -7 inches long, and 4 -5 inches wide. It’s beginning to itch a lot, even though I put cream on it every night. The burn on the front is not so bad; it looks like a medium sunburn.

Food is still an issue. Can’t eat anything cold or hot, anything with texture or spice (that includes salt & pepper), can’t have fruit, nuts, or meat, and dairy products are iffy, at best. Everything hurts to eat, but some things hurt much less than others. So what am I eating? Jell-o. Lots of chicken soup. Soft boiled or scrambled eggs. Almost-room-temperature cottage cheese. Some cream of mushroom or potato soup, but the added milk sometimes upsets my stomach. (And sometimes doesn’t.) I can also eat instant pudding and tapioca pudding, ditto on the milk. I was craving French fries the other day, and bought a fast food sandwich to go with them. Oh, I took a fry, and chewed it, and it was delicious. And then I swallowed it. Little ouch. And then I had another. Chewed it and chewed it until it was mush, and then swallowed. Bigger ouch. I think I gave up on fry # 4. And the sandwich was just a joke. I ended up giving it and the rest of the fries to my son, who happily gobbled them down. (That’s the 2nd meal of mine he’s enjoyed! I think I see a pattern here.)

Along those same lines, I’m losing a bit of weight. Don’t panic, it’s only a couple of pounds. And I like the new weight, but it won’t be here long. Once I can eat real food again, it’ll be gone in a flash. Really. So I’m going to enjoy this while I can, and relish in the knowledge that I won’t be gaining those 5 -7 holiday pounds this year! (And cursing it all the while, too, because I can’t eat any goodies!)

My hair is looking good these days. (Well, compared to not having any!) It’s about ¼” long, and what’s not white is black. It feels like the soft side of Velcro, and is longer on the top than on the sides. I still wear the wig when I’m out and about, mostly just to avoid attention. At home, I wear a bandanna because my head still gets cold. And I’m reconsidering coloring it when it’s long enough…this black & white look could be interesting! We shall see.

Thanks for being here. It’s good to share good (or even non) news with y’all!  ¶ 12:58 PM 2 comments

  Thursday

Yes, I know it’s been days since I’ve posted anything. I've been busy. I've been working and resting and eating and sleeping. Sometimes I do laundry. I cooked dinner one day this week. I even washed some dishes that same day. I took the dog for a walk 2 days in a row. See? Busy, I tell you!

Let me tell you about Happy Juice Monday. Oh, that was a fiasco. If it hadn’t been happening to me, it would have been funny. Or maybe not. Seems that the radiation and chemo departments were running late that day (I had appointments in both areas), my chart had been lost, I had to get stuck twice for the chemo IV, and I was there for over 4 hours for what should have taken about 2 ½. And I was starving. I left there ready to pull out someone else’s hair. (Not mine; it's just now coming back!)

Today I visited with the doctor and learned how much radiation I’ll be getting for the last few treatments. As it turns out, I have 11 more treatments with the same dose of radiation. The good part is that the angle will change slightly, so maybe in a few days, my esophagus won't be quite so irritated and I can eat something good. Like a cookie. Or have a cup of coffee.

On the plus side, I’ve been eating a little real food these days and boy, it is good to chew something again! Meat still hurts a lot to swallow, but if I chew it enough, sometimes it’s tolerable. Veggies are easier than meat, but fruits are still on the “no way, Jack” list. Peanut butter is also a big fat no-no, as is cough syrup, fruit juice, coffee, and spicy food. Soft food is still the easiest, so I eat that the most, but I sure am getting tired of it. I did try the baby food – yams burn like fire going down, so do carrots, and the chicken noodle dinner. The first ingredient of baby food “entrées” seems to be carrots, so I won’t be eating the macaroni and beef, or the turkey with rice and vegetables. The corn casserole was pretty tasty, though. I may eat more of that. (Hey, it’s a nice change from vanilla pudding!)

Thanks for being here. This game is getting a little old, but I gotta play for a while longer. I'm glad I have y'all for my teammates.  ¶ 1:10 PM 3 comments

  Boy, talk about a rude awakening!

This weekend, I was feeling pretty good. I was not in much pain, was able to eat small bites of soft food as often as I wanted to, my endurance was better, I even took the dog for a long, slow walk. And I was thinking that the worst may be over, that these last 2 weeks of chemo and radiation would be OK. Yessiree, we’re on the home stretch, only 10 more radiations to go, and I’m not quitting now. Got the right attitude, got the right support, and take THAT, Skippy!

And then I realized that I didn’t have chemo last Monday.

Chemo does its own work just fine. Its job is to run through the bloodstream, employing a seek and destroy move on cancer cells. Radiation does its job very well, also. Its job is to shrink the tumor in my lung with the added benefit of reducing my energy level and eating ability. When they work together, their effects are intensified. So, when I had the radiation all this week, I wasn’t getting that extra kick that the chemo brings to the table in the form of more fatigue, more exhaustion, less appetite, and less activity.

I get chemo again tomorrow.

Crud. And $^&*#.

That’s what I get for thinking again. Geez.  ¶ 5:21 AM 1 comments

  A better day

Oh, what a difference a day makes!

Wednesday I was feeling pretty bad. I went to work for half the day, and was just exhausted when I left. My head hurt, my throat hurt, my back hurt where the radiation burn is (it’s about 6 or 7 inches long, 4 or 5 inches wide, oval shaped), and I was just beat. Once I came home after radiation and had a nap, I was a bit better, but still tired. Theresa came over with food to try; and by golly, I tried most of it. It turns out that while rice pudding tastes awesome, it hurts the most. Mashed potatoes are also a no-no. Cream of mushroom soup works, but the chocolate pudding doesn’t. Along with other goodies, she also brought me some Jell-o. Jell-o still goes down easy, as long as I take tiny bites. I know that I can’t survive on Jell-o and pudding, so I bought some baby food to eat. I haven’t tried it yet, but I will, and will let y’all know how yummy it is. Wednesday night, I took some liquid ibuprofen (tastes awful, but it works great!) and ate some vanilla pudding and went to bed. I slept most of the night, not waking up until morning. Just sleeping the entire night made a huge difference; I didn’t wake up in pain even once. It makes for a much better day.

It was suggested to me that I take Thursday off, and I decided to go ahead and stay home and rest. And I did. And I rested and snacked all day long and felt pretty darn good. Still fatigued, but not unbearably so.

I got good news at the radiologist, too! I have only 11 more treatments, and on Tuesday or Wednesday, the amount of radiation will change to a lesser amount. This means that while I won’t be feeling energetic, I won’t be much more tired than I currently am. This also means that the treatments are progressing as predicted, no surprises or detours here. It’s a satisfying feeling to know that all this misery has not been in vain, and I am grateful to know that I am making progress.

I’m also grateful to have y’all here with me. The comments on the blog, the cards, letters, and emails I get keep me encouraged and hopeful. Thanks.  ¶ 4:41 PM 0 comments

  Tuesday

Well, I now know why no one had any encouraging stories regarding radiation. The reason? There aren’t any. Radiation is awful. It very quietly zaps energy and appetite. And it’s cumulative, so every zap adds to the one before, so that every day, I am more tired and less hungry than the day before. I have reached the point where swallowing anything hurts a lot. It feels like I’ve swallowed a hot charcoal briquette. It doesn’t hurt in my throat at all, the pain is in my esophagus and in my back. Fortunately, I decided that starving to death was not an option, so just last night I learned how to eat and drink. I can take tiny sips (think baby spoon size) of room temperature water, and I can eat tiny bites of soft food, like pudding and soup. Yes, it takes much longer to eat and drink that way, but the food stays down and it doesn’t hurt as much to swallow it.

I learned today that I can take children's liquid ibuprofen for pain! Since I can't swallow pills anymore, I had to say good-bye to my daily Motrin and multi-vitamin. I was in considerable pain so I was happy to know that I could take something. It tastes awful, though.

I was very puny on Monday. I went to work, stayed exactly an hour and a half, then came home and spent the day on the couch. I did take time to go for chemo (it was Monday, after all), and was not well enough for it, so I got a reprieve. I did get radiation, though, I guess one is never too sick to be zapped. I talked with my oncologist regarding pain, radiation, and medicine. I told him that I’d been pretty sick most of the day, with vomiting and fatigue and was unable to eat. The vomiting was caused by one of the pain meds, which was supposed to help me eat. Ironic, huh? I took the medicine, hoping to be able to consume something worthwhile, and ended up losing it all. The good doctor and I discussed taking a break from the radiation. After giving that about 1 second’s thought, I declined that offer. If I take a break, I’m not going back. And so the doctor suggested talking with Dr. White (the surgeon) to see if I can be put on his schedule sooner than planned. After thinking that over for about 3 seconds, I declined that offer, too, saying that 30 rounds of radiation were prescribed for a reason, and stopping in the middle may make it all in vain. What I want is just to be able to eat. So if we can deal with the painful swallowing somehow, I’m willing to keep going. I have a new prescription for a different kind of painkiller, along with a prescription for nausea. Now that I have learned how to eat, maybe I won’t need them. We’ll see how this goes.

(I just may follow Bon Cheri Bomb’s advice --see her comment on previous entry-- and start eating baby food. What the heck, it’s soft, it’s about the right amount, and apparently healthy.)

I have good news! The other day, I was looking in the mirror and saw… could it be? YES!! I have HAIR!! Oh, it’s soft and fuzzy, like a puppy’s ear, and very, very short, and most of it is white (White?? No matter, Clairol and I will fix that!), and I was happy to see it! I was doing the Snoopy dance around the room. I’ll be wearing the wig for a while until it grows enough to be seen from a distance. Just thinking about it makes me smile. I keep messing with it--I hope I don’t rub it all off! I have hair, I have hair! Heehee.

Thanks for being here.  ¶ 6:06 PM 2 comments

  Saturday


The days are really getting harder now, and I’ve decided that I’m going to be working partial days for a while. I don’t want to, but working full days is wearing me out. I need to rest up so I can go to work the next day. This fatigue really ticks me off, to say the least. I can do one or two little things and then I have to sit and rest. And I can’t even work up a good snit over it, because I don’t have the energy to do so. #@*^&.

I’ve discovered that I don’t feel bad from the cancer anymore, which is very good news. However, I feel rotten from the treatments --how ironic is that?? It’s funny (and you know I don’t mean ha-ha) that the treatments that make me well also make me feel like wet dog food with flies. And I understand that it’s going to snowball from here. Get ready for some serious whining.

I’ve gotten some medicine (good drugs!) to help with the painful swallowing, and the lump-like sensation just beside my spine. The funny thing that happened was when I first took that medicine, that I just took a teaspoonful, and drank it. Suddenly, my entire mouth, tongue, and back of my throat were numb. I couldn’t feel anything, couldn’t taste anything, and dinner was being served. Great. (Y’all know how much I hate to miss a meal!) Luckily, it didn’t last too long, the numbness went away, and I enjoyed my dinner.

Speaking of dinner, yes, I’m eating. Not a lot, but I’m eating. I’ve found that room-temperature food hurts the least to swallow, small sips using a straw hurts less than a drink from a glass, and that multi-vitamins are darn near impossible to get down. I also feel full sooner, which means I’m generally eating less at one sitting. But because I’m eating less, I get hungry more often, so I get to snack more. It evens out. (Come to think of it, I haven’t had dark chocolate in days. Oh, that just can’t be right, can it?)

Thanks for being here. It’s a comfort to know that my cheering squad is right here, surrounding me with happy thoughts and good wishes.  ¶ 6:17 AM 3 comments