Doing Okay
I made it through Christmas :) The cinnamon roll was a bad idea, and then later I had some watermelon, another bad idea. Around 7:30pm I felt okay though, and was able to join the family. I'm amazed that I've had a new stomach for 6 months and STILL have no idea what I can eat and what I can't. It's a complete crapshoot for every meal.
I got some fluids today which was good. It kind of keeps me going for a few days. But I'm starting to come out of my chemotherapy/radiation haze. I'm noticing food tastes better and not like something out of a tin can. In fact the idea of eating at all is not so horrible as it was only a few days ago. Improvement! I didn't have a nap today and I haven't completely crashed. Amazing! I ate french fries and actually kept them down. Miracle!
I'm still pretty inactive though I get out of the house a bit. I can't concentrate (did I spell that right?) enough to read or sew or really do *anything* constructive. But baby steps- a little bit at a time...
My next chemo is scheduled for January 18, and I'll get chemotherapy every day for 5 days. This is the same thing they gave me in October which made me REALLY sick. But maybe my body is more used to the abuse, and maybe now I'll have enough drugs to make it liveable. I've let them know at Dana Farber I'm pretty anxious about the whole thing, so hopefully they'll throw the pharmacy at me. :)
I hope you had a Merry Christmas or a Happy Hanukkah! Thank you so much for your cards. I still love to read them. :)
Merry Christmas!
My dad took me into Dana Farber for fluids this afternoon, hopefully to keep me going.
I just cooked some crabcakes for my parents. I probably shouldn't have eaten one since they're fried, but they're *lightly* fried so hopefully it won't kill my stomach. I made some raspberry squares earlier today too. It feels good to do "normal" things. You know, I can't remember the last time I drove a car?
I'd like to go to midnight mass tonight but I'm not so sure I'll be able to stay up that late. I only took a one-hour nap today. I might just watch on tv. :)
Non-Metallic Food
I'm so excited-- I ate a **BAGEL** this morning! And what's better, it TASTED like a bagel! Things are starting to lose their metallic taste already. I thought it would be longer than a week but I'm noticing the change already. I'm drinking egg nog right now recognizing it's a terrible idea, but it almost tastes normal. I had some last week and put it back in the container-- it was undrinkable.
Somehow I've gotten a cold on top of everything. I have no idea where I picked it up, but likely it was at the hospital. I took
airborne twice when it first started but this cold is apparently too strong. Oh well. I can deal with a cold.
Please add
Lowe's to Jen's Hate list. In a chemotherapy illness-induced move I overpaid them in October and they won't give me the excess back. Mom is fighting that one for me too. She's talking to them as if she's me. It's just easier that way.
Hating "The Hartford"
I seem to be having a good day. I haven't thrown up (Yay!) so that automatically makes it good.
I received another beautiful bouquet today from my Aunt Betty and Uncle Dan. A girl can never have too many flowers. :) I will have to take a picture, it's very christmas-y!
I'm actually online to pay my bills. Would you believe
The Hartford is still trying to decide if my case should be approved for long term disability? Yeah, I haven't been paid since Halloween. It's like being unemployed with the bonus of being unable to look for work because I'm too busy being sick. They've requested medical files from Dana Farber and Brigham and Womens Hospital to find out if my cancer was a pre-existing condition. You know, like a chronic back-ache?
The BEST part is that who they addressed their requests to... "Dana Farber" and "Brigham and Womens". Like any human being is going to open that letter and send it to the right department so someone
else can find my file so someone
else can start pulling the appropriate parts of my medical record so someone
else can get it back all in a timely manner... let me ask this: Why does The Hartford ask me for every doctor I've ever seen if it isn't going to use that information in its letters?
I hate The Hartford.
My mom is on the case though. She made all kinds of calls and faxed the letters to actual accountable human beings who work with my doctors. It's a creative idea but it just might work. I'm not sure what I'd do without my mom! I can't fight these battles, I just don't have it in me.
Lovely Flowers
I had a bad day yesterday, but I'm always willing to let "today" be a better day. So far so good.
AND, to make things even better, I received a beautiful bouquet from my Wallace cousins. I just have to share even though the picture doesn't quite to it justice...
And my Aunt Re-Re sent me a beautiful royal purple hat that she made herself! I wore it all last night.
I found out from the nurse yesterday that radiation and chemo is CUMULATIVE so it's okay that I feel more tired now than I did last week. More sick and tired. It's expected.
Oh and Dan, I met your nurse Lori yesterday. She is so nice! I told her what a huge help you've been to me during this whole crappy episode and it was just a lovely "Dan is great" party. :)
I hope you all have your shopping done! I can't believe it's almost Christmas. My nurse Nina said I might be feeling better by Christmas. I shouldn't hold her to it, but I am. I expect to be able to enjoy a mimosa and cinnamon roll like I do every christmas morning. I'm counting on it!
Getting Used to "it"
My body did a terrible thing to itself. It got used to radiation and chemotherapy. And now it's missing them. I am serious-- I threw up GINGER ALE yesterday. I didn't even think that was possible.
I was doing well my last week of rad/chemo. I felt upbeat and relatively well. My radiation oncologist was very pleased and told me some people genuinely do get used to the abuse. He allowed me to go into the hospital yesterday (saturday) for my last radiation appointment and so they also took the chemo pump off me. I can't say that I *miss* it but I haven't completely gotten used to having it gone yet. Since it was attached to me it was hard not to think of it constantly.
I feel so weak. Drugged though I'm not. I slept 13 hours overnight, had a 3 hour nap... and I'm really tired.
I'm not sure how I'm going to wrap christmas presents. There are a handful going out in the mail to Wisconsin tomorrow and I haven't a prayer. My mom already said she'd wrap them for me. If christmas was tomorrow everyone would have "CVS" and "Target" white plastic shopping bags for wrapping. :)
I just shut my eyes for a few minutes. zzzzz. Great news, I have to go to Dana Farber tomorrow. It's just to see my oncologist though. And I'm getting more fluids. Because at 3:00pm my mother asked me when was the last time I went to the bathroom. And I said "yesterday". So I'm a little dehydrated maybe.
Anyway, I've got a nice week ahead of me. Quiet. No more appointments after tomorrow. Plenty of time to watch all those fun christmas movies and just rest up. If the nausea goes away it would be a huge bonus. I'm sick to death of throwing up!
Thinking Ahead
I'm starting to think about things I'll do in the future, which is a nice change. I've been thinking about tea a lot, the etiquette of afternoon tea, that sort of thing. I've always thought I should have been born at the turn of the century. White gloves and titles. Horse carriages and high-collared gowns. I've been meaning to ask my parents why I was never given a grand ball in my honor. And just exactly when am I to be married off to a Duke? So I know I'm feeling in good spirits when this kind of thing is occupying my mind.
I want to get back to the research I was doing on victorian era etiquette, but I really haven't the energy. Just the will. And you wouldn't BELIEVE what a weakling I've become. I can't believe it myself. I used to think of myself as the sort of person who could rescue a child who became trapped under a car. I'd just lift the car over my head, and... I have to pass bottles off to my mom to open them. I'm not quite at the frail stage yet, but I'm guessing by the time my chemo is over I'll be able to just barely lift a mug to my lips.
And getting back to the pumpkin cream cheese roll I mentioned at thanksgiving, below is the recipe... I tried a tiny bit but really can't say if it was good or not. The frosting was yummy. Everything tastes metallic to me, like I'm sucking on metal lifesavers. Now is not a good time for a cooking club meeting. :)
Prep: 45 min - Cook: 15 min - Cool: 60 min
CAKE:
- 1/4 cup powdered sugar (to sprinkle on towel)
- 3/4 cup all-purpose flour
- 1/2 teaspoon baking powder
- 1/2 teaspoon baking soda
- 1/2 teaspoon ground cinnamon
- 1/2 teaspoon ground cloves
- 1/4 teaspoon salt
- 3 large eggs
- 1 cup granulated sugar
- 2/3 cup 100% Pure Pumpkin
- 1 cup walnuts (optional), chopped
FILLING:
- 1 pkg. (8 oz.) cream cheese, softened
- 1 cup powdered sugar, sifted
- 6 tablespoons butter, softened
- 1 teaspoon vanilla extract
- 1/4 cup powdered sugar (optional)
FOR CAKE:
PREHEAT oven to 375°F. Grease 15 x 10-inch jelly-roll pan; line with wax paper. Grease and flour paper. Sprinkle a thin, cotton kitchen towel with powdered sugar.
COMBINE flour, baking powder, baking soda, cinnamon, cloves and salt in small bowl. Beat eggs and sugar in large mixer bowl until thick. Beat in pumpkin. Stir in flour mixture. Spread evenly into prepared pan. Sprinkle with nuts.
BAKE for 13 to 15 minutes or until top of cake springs back when touched. Immediately loosen and turn cake onto prepared towel. Carefully peel off paper. Roll up cake and towel together. Cool on wire rack.
FOR FILLING:
BEAT cream cheese, powdered sugar, butter and vanilla extract in small mixer bowl until smooth. Carefully unroll cake; remove towel. Spread cream cheese mixture over cake. Reroll cake. Wrap in plastic wrap and refrigerate at least one hour. Sprinkle with powdered sugar before serving.
Makes 10 servings
Note: Be sure to put enough powdered sugar on the towel when rolling up the cake so it will not stick.
A Good Laugh
This made me laugh and I had to share. Be warned of bad language and biting sarcasm. For example, #1 Why is Santa such a complete bastard?
Sixteen Serious Questions Raised by Rudolph The Red-Nosed ReindeerPRICELESS!
(And I added a list of things that make me happy over there on the left side. Just a few things off the top of my head...)
Reconnecting
I sent most of my christmas cards out already and had to take the awkward moment to say "GUESS WHAT!" to a few people. I really wanted everyone to know at the same time, back in July, but I couldn't figure out how to contact some people and...what, should I have written letters back then? I don't know. And where the hell is Costa? There, I've said it.
I hope I didn't make it too big of a surprise. "Hi, How are you? Yeah, I have stomach cancer..." I basically said I was diagnosed in July, and I'm doing well though treatment sucks. I think it summarizes it nicely. But it's really no better than the
blast email I sent out back in July. Talk about a
shocker.
I haven't had a pity day in over a week, which is amazing. The social worker at Dana Farber tried to get me to have one today but I wasn't buying. She gives me the pity look, which I HATE, and immediately I'm strong. Don't confuse the look of pity with real compassion or empathy. You don't need to make the "oooh" sound either. It doesn't help.
No, for now I say things are kind of crappy but I have to just deal with it. I'm in the homestretch with my chemo/radiation double-whammy. My nurse Nina stood in front of me today with a big smile, saying I had done well. It was like I had saved the company money or passed an exam with flying colors. I've just tolerated the torture well, I've somehow been able to keep my blood level, I haven't gotten sick (outside colds) and I try my damnest to eat something 3 times a day.
I found that taking my pills with tea works really well. Another happy use for tea! GOD I take a lot of pills for a 31 year old. And if I take them with water they usually come back up again. Eww.
Anyway, I only have five treatments of radiation left and they put the last pump on me today. I'll be disconnected next monday (though I'm trying to pull some strings to get everything overwith on saturday).
I'm excited to be reconnecting with long lost friends. Hey, if it takes this crap disease to do it, then so be it. We're often looking for excuses and I'm happy to provide one. :)
To everyone: I'm extremely tired right now and avoid the telephone like it might give me cancer (really) so email or snail mail is the best way to get me... and there might be a delay. I'll try to be better about posting, a little more than once a week. :)
I wish I could give you a big hug!! Thanks for caring enough to check in on me :)
Hurting Hair
So now my hair is thinning. Don't get me wrong, no one on this earth can tell. Not even me. But the evidence is at the bottom of the tub. And in the sink. And my pillow. I have insanely thick hair though so if it can just continue to fall at its current rate it will just be like the thinning I pay for at the hairdressers. Thanks radiation!
And my hair actually hurts. My mother suggested it was my scalp that hurts, but I maintain it's actually my hair hurting.
I'm having a good evening after feeling kinda crappy earlier. Dinner tasted good but didn't sit well. It's amazing how I still learn what I can eat and what I can't. French toast-- on the maybe list. I won't put it into the "no" list just yet because I might be okay with it later. Jello is still my favorite meal. I prefer grape. I'd like some now but it's too late. If I stop eating about 7:30, I don't throw up in the middle of the night! Amazing. :)
I've been terrible about updating this blog but I'm SOOOOOOOOO tired all the time. I've got some strange sugar-induced bit of energy that I'm using for online christmas shopping (how did cancer patients shop before?). But I'm fading fast...
My stomach hurts to the touch now, which is pretty crappy. It's an inside-out and outside-in kind of thing. I have to keep the tubing from the chemotherapy pump away from my belly because the tube can press up against my stomach and that REALLY hurts.
I'm looking forward to my last day on Dec 19. They'll take the pump off and radiate me for the last time. And they'll stop writing on my body with blue and red markers, and I won't have to put those stupid hospital johnnies on, and I won't have to be taped to the table (a few of you know what I'm talking about), and I can actually stop going to the hospital every damn day!
Eight days left, but who's counting?
Radioactive
I can't believe how tired I am. I can't believe I'm not bothered by the chemo pump anymore. It's just *always there*.
I'm doing okay, though really inactive. I'm not on the computer much so I'm sorry if you've sent me something and I haven't responded. I'd describe myself as feeling like I have the flu. You can relate... :) Zzzzzzzz
