Please Pray
If you would, please pray for my two close friends, the parents of tiny Lauren Diane. She returned to heaven today after being born a few days ago.
My heart breaks for them...
I am here!
I'm here I'm just exhausted. Radiation has caught up with me. I'm sleeping more than 12 hours a day and THEN taking a nap on top of it. It was so wonderful to have the pump off for 4 days that I'm 3 days into having it back on and not hating it as much. Don't get me wrong, I hate the pump, I'm just not at the "disconnect it myself" level yet.
And I bought an inflatable bed ramp so my head is elevated but my feet are NOT so I don't slide out of bed. It's a very cool thing, and I can actually breathe better.
I'm having bizzare dreams again though. Fully-realized-I-could-be-a-billionaire kind of dreams that make me wish I could write it all out. I've scared myself repeatedly for the past two nights. Its been one long story that continues even when I wake up and fall back to sleep. Got to be drug-induced.
Oh, would you imagine, it's time to go to the hospital again. I'm off. Happy last day of November!
Happy Turkey Day
I'm feeling better today. The house smells like cranberry and pumpkin bread. Yummy!
I think its the new medicine. That and the pump being gone.
The pyschological concept of a drug-free day is definitely helping. It's not perfect, but I'm wandering around and more active. I made dinner last night. Sure it was a refrigerated pizza I just topped with mushrooms and tossed in the oven, but *still*. I couldn't raise enough energy to make my own jello last week.
I'm watching the Macy's Thanksgiving Day parade and about ready to make a pumpkin-cream cheese roll for dessert. I'll share the recipe if it comes out good. :)
I'm glad I'll feel okay when family comes to visit! Aunt El is here already, but my grandparents, Aunt Karen and cousin Jon will arrive later. The sun is coming out right now, and it snowed this morning. It kind of makes me think of how the chemo has been... sun is coming out. :)
Hangin' in there
I've been kind of quiet lately, but doing okay. I actually was granted a reprieve by the warden and I have my chemo pump off through monday. Dr. Bhargava said since I'm not getting radiation for 4 days (Thanksgiving holiday) that I could take it off "if I wanted to." Hmmm, should I?
Good thing he didn't change his mind, that would have crushed me completely!
He also put me on another nausea drug--something new on the market. It's working well so far. I still throw up in the morning and feel ill but I don't feel AS ill, and believe me, that's huge. And I'm able to force-feed myself which just wasn't possible before. I don't want to eat, but I WILL eat. Another big difference. Before I didn't want to eat and just couldn't either.
So I have a four day break. It's so nice to have the needle out, to have the chemo bag off my shoulder. I feel like I'm getting another vacation. It's strange, I'm not "working" at beating cancer, I'm just allowing things to "happen" to me. But it's exhausting and somehow seems like a lot of work.
And don't worry about me not enjoying Thanksgiving. Its my least favorite holiday. I prefer Labor Day or Flag Day over this one. The food is all brown, outside everything is brown, people even dress in brown (look around your table tomorrow and tell me I'm wrong). I'm not a turkey fan and don't like pumpkin pie... I think I'll be having clam chowder tomorrow. I wish they'd let me have that every year! :)
Happy thanksgiving to you and yours! The real reason for the holiday is to be thankful for what we have, for friends and family, for the ability to overindulge, and for a restful pause. No gift exchange required, just wear your eatin' britches.
Inhumane Treatment
I had a pretty mopey day yesterday though I really only cried at night. I'm back to feeling sick and not wanting to eat anything. And carrying this chemo thing around is depressing as hell. Not a second goes by that I'm not reminded of what I'm going through. It's inhumane. I hate it all so much.
I had radiation this morning (yes, Sunday) because I have to have 4 days in a row (at least) and they're closed on thanksgiving. And they're closed on friday too. Which is a bit of good news. I'll get to go four days without radiation. Radiation doesn't bother me, it's the drive in that I hate. It's so tedious. And when I feel like crap I don't want to socialize. Like when my mom takes me in, I nap the whole time. But I feel like I should socialize with the people kind enough to bring me to the hospital. I need to get over that.
I got some fluids today because usually when I'm crying it's because I'm also dehydrated. I've eaten four saltine crackers today. I'm trying to eat some lemon jello right now. My mother would like for me to eat some steak to help my blood levels. I just don't think I can do it. I've only thrown up twice today, and both were in the middle of the night but I always FEEL like I'm going to throw up which is actually worse.
And don't get me started on smells. I didn't notice it last time, but a common side effect is for everything to smell bad. I'm simplifying, obviously, but I've noticed toxic smells in the christmas ornament section of Target, a Best Buy flyer was too chemically strong for me to even look through it, and I can smell food from miles away.
Chemotherapy is torture. I think I'd rather be in jail. I don't know that for certain, but it seems like jail would be managable.
"Jen, will you take your current chemo and radiation schedule or go for what's behind door number two?"
"Oh, door number two. Definitely, Bob."
"Are you sure? It could be worse than what you have now."
"I doubt that Bob!"
Ugh
I'm a week into the deal, I've got 4 weeks to go, and I'm starting to get sick. I've been getting a morning sickness type of thing where (before today) I'd just throw up after I woke up from a nap or whatever. Now I toss whatever I eat. Bleech.
Chemo sucks.
I actually read my chemo bag and I've been getting 14 ml of chemo per day. That is not much at all, but it's starting to add up. I STILL don't feel as sick as I did with the five day push, but I'm starting to feel crappy.
And damn, do I wish the days were going by faster.
How to Take a Shower...
...while this thing is attached to your chest by a few feet of tubing:
- Plan ahead. Do you really need to shampoo and condition your hair? Have all bottles in front of you.
- Have someone else put a plastic bag on your chest and duct-tape it securely on from around your neck to your armpit.
- Pretend this is how you usually bathe.
- Hang the chemo pump outside the shower and give yourself plenty of tubing so you don't trip or somehow hang yourself.
- Get in shower and above all, try not to get wet.
- See if you can beat your prior record for fastest shower ever.
- Get out of shower, towel off, and rip duct tape from your neck- slowly. Or you'll be sorry. Ignore angry red marks and sticky tape stuff.
- Rejoice in not being electrocuted!
Phase II
So I'm off and running on phase two of my five phases. The next phase (three) is my favorite, because it's a month-long break. :)
My blood levels were fantastic on monday and they hooked me up to my chemo pump. It goes everywhere I do. It doesn't hurt, I can't feel the needle in my chest though I know it's there. I press on it occasionally to make sure it hasn't come loose and all seems fine. The pump makes a whirly sound every so often. I'm sure I'll get bored at some point over the next few weeks and I'll time out exactly how frequent the whirly sound repeats. The bag of chemo says 98 ml but I'm not sure if that's per day or total. I didn't pay enough attention yesterday to what the numbers said. All I know is it's running.
Radiation was no problem. I lie flat, which for me is not easy (mmm reflux) and a giant sphere hovers magically over me, beeeeeeeps, then it rotates to my left like the setting sun. Beeeeeeeeeep again. Another rotation underneath the table I'm on, and a final beeeeeep. Once I'm in the room it's all of five minutes. Waiting for my turn takes a bit longer.
It's day two today and I'm taking some of my anti-nausea meds to be on the safe side. They make me really tired. So I'm leaving for my appointments about 10:30am, and when I get home, I take a 4 hour nap, have dinner, and then go to bed early. It's no wonder I didn't get to post yesterday, I was only awake for three minutes. :) But then yesterday was the long day. I was in the hospital a little before 8am. As long as I don't need fluids I'll be much better off.
I only have mild nausea, which is good. It's often hard to tell why. Is it the drugs? Something I ate? Am I thinking about it, therefore feeling it?
I'm just glad to have the show on the road. Speaking of road, thanks a billion times over to everyone who has volunteered to drive me into the hospitals. I think I have coverage now for all my appointments, but I'm so thankful for the generosity of so many. I love you guys!
Lets try again
Hopefully I've been quiet enough this week that I can start chemo and radiation tomorrow. I'm more ready than I was last sunday, I know that much for sure.
I've eaten when I didn't want to and taken my meds when I really, really didn't want to. And there was a huge party at my parents house thrown for my cousin Jon and his fiancee Lynse. And I could be part of it until I heard the best-man-to-be say (through a very stuffed nose) he didn't want a beer because he was trying to stay hydrated. Cue to leave!
Craig the Betta
Many of you know about "Red Craig" my betta fish. I had him on my desk at work at my old job where he and "Blue Craig" (RIP) were very happy. Red Craig recently moved into a new home and I thought I'd share a picture...
This week is the first week without more than one doctor's appointment since sometime in July. It doesn't seem natural. I'm just supposed to rest and drink as much as I can to keep from being dehydrated. I know it sounds silly because I walk around with a drink in my hand all the time, but I can't knock back water or whatever the way I used to. My stomach is so small I can only drink a little bit at a time. I don't drink anything with caffeine and when reflux isn't bothering me I stay away from even decaf tea.
Anyway, I feel like I'm on vacation and it's great! :)
Delayed a Week
So that familiar feeling of "falling between the cracks" is back again. This time with the American Cancer Society. The woman I'd spoken to a few weeks ago to just called me this evening, "I'm sorry, I think my grandson threw away your information."
What happened to computers, are they writing on sticky notes? What the heck! Also, if the kid threw it away, how did she find my name and phone number? Hmmm. She even remembered I was supposed to start chemo/radiation today. "And you sound really young." "I'm only 31." I plan to use "only" before my age from now on. I'm only 72, for example. :)
So the point of contacting the ACS is that they're the only place I could find that would help with transportation to the hospital. Since I have to go in five days a week for 5 weeks I'm looking for all the help I can get!
---BUT---
My blood counts are too low and so I'm delayed another week. I hadn't realized how tense I was until I started breathing again once my doctor (back from vacation!!) told me. I woke up this morning ready to face it all but was very excited I didn't have to start. C'mon low blood, c'mon low blood... But then my blood pressure was unusually low too. So I was dehydraded again. I received the equivalent of a 2-liter bottle of soda and still didn't have to use the ladies room. That kind of tells you something. And I got a flu shot which I'm happy about. This is not the year to "wing it."
Happy E.R. To You!
My birthday yesterday was partly celebrated back in the type of place I was born-- a hospital.
I noticed my port-a-cath incision site was looking kind of a yucky green and the oncologist on-call told me I had to go to Brigham's Emergency Room. I even told him it was my birthday to see if he'd say "Oh, well in that case..."
Then I had another idea: "Can I go to a local hospital?"
"Well, they won't know how to deal with the port-a-cath."
"Okay, I thought I'd ask."
I knew he'd say it but had to try.
I had a little mini-breakdown that I wasn't going to be able to go have tea on the cape as I'd planned to do, but rather I was going to have to go back into the city (a lovely hour-plus drive each way) to the &$*#ing hospital. The ER no less.
As soon as I told the ER nurse I have low blood counts they made me wear a mask. Damn those things are hot! In the end everything is okay, and there is no infection. I just can't figure out why the incision site from an operation in *September* is still not healed. My stomach healed without a problem and this port-a-cath thing has been a complete bitch.
I took a nap when we got back home and then went to Outback with my parents, grandfather, Aunt Karen, Aunt El and Cousin Kath. It was lots of fun even if I didn't eat much of anything. Just being there was great! (FYI their clam chowder is terrible.)
I'm supposed to start radiation and chemotherapy tomorrow. I have blood taken at 8am to see if it's possible. I'm wondering how my blood could have improved since wednesday, the last time blood was taken, but who knows. I'm not nervous about radiation and I think chemo will be better this time than last. It's still a bitch to sleep though- I've been looking at adjustable beds online this morning. I'm sad though, I love my matress! I especially love my bed frame, which I wouldn't be able to use anymore. I've always slept in canopy beds. Anyway, it's depressing. But I guess waking up without feeling like someone is strangling me would be kind of nice...
Afraid of Delays
I found out from my radiation oncologist that if my white blood cells aren't up above 1000 (huh?! what does that even mean?) then chemo and radiation will be delayed a week. NOT good news. I don't want to be delayed, I want to feel good around christmas.
Now I'm just paranoid of people. A few doctors shook my hand yesterday and I raced for the antibacterial gel. And if I wasn't a hermit before I'm going to be one now! I've got to hide out and rest as much as possible. Ummm, so why am I up in the middle of the night?
Why else? I'm up at 2am because of reflux. It's my own fault, I had some oyster crackers before I went to bed. I was worried that I'd taken 2349082 pills on an empty stomach. I've been coughing up a lung for an hour but feel better. Hot tea is a life-saver!
Tired Blood
I learned today I have low white blood cell counts, which I can add to my already low red blood cell counts. I didn't realize that unlike with red cells you can't do anything to raise your white cell count.
The oncologist told me in "old days" I'd have to wear a mask around and pretty much sit at home. But I guess I just have to become obsessive about washing my hands and stay away from crowds. No hand shaking, no licking street signs, that kind of thing. He said if I was scheduled for chemo today they wouldn't have been able to give it to me. That was a bit disturbing.
Today was a much better day than yesterday. MUCH better. I'm amazed that I still learn things each day. For example, I learned last night that taking one of my medications before I go to bed makes it less likely that I'll wake up ill in the middle of the night. Well, it worked for one night anyway. :) And I learned that waffle fries are just as bad as regular shoe string fries. I know it sounds stupid that I should try that, but home fries are okay and potatoes are okay. I guess anything pan-fried is okay but deep fried is NOT. Lesson learned. :)
Paging Doctor Jerk
I have to meet with my substitute oncologist tomorrow morning.
My doctor is STILL on vacation (ARRRGHGHHG) and so I'm meeting with another doctor. He's quite arrogant and I'm not very fond of him. He told me I'd have to "suck it up" and just deal with the fact that I have to have chemo & radiation at the same time. My mom didn't hear him say it, which is good because he would have become the SECOND doctor whom she's threatened.
Did I mention the first doctor who didn't return pages from the hospital on my behalf? Yeah, he had turned his pager off. Off!! Mom told my nurse Nina that she would step on his neck if she ever met him. Who turns their pager off when they're on call?!? We've gotten lots of apology phone calls and the
head of the GI department stopped in during my last office visit to apologize in person. Very nice guy and decent of him to do that.
Mr. Anti-pager is the doctor who I was *supposed* to see in my doctor's absence but for obvious reasons I wanted a different oncologist. Dr. Bhargava is going to be back Monday and I have an 8:30 appointment to see him. That has to be his first appointment of the day. I wonder if we caused enough trouble that they bumped people for me. Hey, you have to be an advocate for yourself!
Anyway, I had a bad day today (lots of cookie tossing) but tomorrow is a new day!
The pyschological concept of a drug-free day is definitely helping. It's not perfect, but I'm wandering around and more active. I made dinner last night. Sure it was a refrigerated pizza I just topped with mushrooms and tossed in the oven, but *still*. I couldn't raise enough energy to make my own jello last week.
Happy thanksgiving to you and yours! The real reason for the holiday is to be thankful for what we have, for friends and family, for the ability to overindulge, and for a restful pause. No gift exchange required, just wear your eatin' britches.
This week is the first week without more than one doctor's appointment since sometime in July. It doesn't seem natural. I'm just supposed to rest and drink as much as I can to keep from being dehydrated. I know it sounds silly because I walk around with a drink in my hand all the time, but I can't knock back water or whatever the way I used to. My stomach is so small I can only drink a little bit at a time. I don't drink anything with caffeine and when reflux isn't bothering me I stay away from even decaf tea. 
I noticed my port-a-cath incision site was looking kind of a yucky green and the oncologist on-call told me I had to go to Brigham's Emergency Room. I even told him it was my birthday to see if he'd say "Oh, well in that case..."
My doctor is STILL on vacation (ARRRGHGHHG) and so I'm meeting with another doctor. He's quite arrogant and I'm not very fond of him. He told me I'd have to "suck it up" and just deal with the fact that I have to have chemo & radiation at the same time. My mom didn't hear him say it, which is good because he would have become the SECOND doctor whom she's threatened.