I've Been Deported

What an eventful day!  I went to work for an hour and a half, and then headed to radiation.  This was the first of five boosts.  The boosts are going to be MUCH quicker than the regular radiation.  They just do one blast to a concentrated area, instead of 6 blasts to various parts of my skin, chest wall, etc.  Today was the lining-up day, and starting tomorrow, it will go quickly.

After that I drove around to the other side of the same hospital to get my port removed.  I was so excited!  I'm not sure why, but I think it's because it's just one more step toward being done.  I got parked, in to the office, and checked in a full 10 minutes early.  I was ready to get this show on the road!

The nurse took me in and took my vitals, and then told me to undress from the waist up and put on a gown.  I couldn't wait.  When she came back, the Dr. was following her, as was his medical student shadow.  He started talking to the student about the fact that I was in active radiation, and they usually don't get to see patients until six months after.  Then he asked if they could see the radiation site because he rarely gets to.  Umm, sure!  Why not?  They talked as they viewed my raw skin.  Come on, guys.  Let's yank this port!

Finally, they were ready.  The nurse placed a special pad on my lower abdomen.  It was to ground me so the equipment wouldn't shock me.  Very interesting.  After that, the surgeon (I really like this guy) started disinfecting and then numbing the skin.  It was time to start!  He warned me that I'd feel a bit of pressure, and I could tell that he was slicing into me.  This was getting interesting!

As he was cutting, I said, "So...are there any rules against you giving the port to me?  I mean, can I have it?" He thought for a minute and then said, "Well, you paid for it.  Sure you can have it."  I got 17 kinds of excited!  I have friends and workmates who thought I wouldn't ask, and now I'd asked.  Not only that, he said YES!

As I was reveling in the fact that I was going to leave with port in hand, I noticed smoke rising from my chest, and I could smell burned flesh.  Umm.  Weird.  "Is that normal?" I asked.  He assured me that it was.  I then lamented, "That makes me want bacon."  By now, the whole room was laughing with me.  I love it when an act comes together.

At one point during the procedure, the surgeon said, "Wow.  This one is in there deep.  I did a really good job with this."  LOL  That made me giggle.  He was admiring his work, even as he dug it out of the scar tissue that had formed around it.  Funny stuff.  If it was so deep, that might explain why it didn't bother me, and some people complain about theirs.

Finally, it was done.  He had stitched me up, leaving only a 1 1/2" scar:

I think his stitching job was amazing.  I can only see the knot at the left side of this picture.  It will soon dissolve.  He cut along the same scar that was created when he placed the port to begin with.  The nurse offered to clean up the port for me so I could take it with me.  Sweet!  She brought it back wrapped in a towel and placed in a bio-hazard bag.  Awesome!  It sat on my desk all day:

I went back to work, grinning all the way.  I had forgotten how nice it was to visit with a doctor that I like.  I like all but one, but the one bad apple is the one that I'm forced to see once a week right now.  Seeing the wonderful Dr. Shook was SO refreshing.  I couldn't wait to tell my coworkers that I had my port with me!  In fact, I called a couple of them on the way to work!

Why did I want it?  I have several reasons.  I am weird.  They said I wouldn't ask.  I am weird.  It made me feel brave to ask.  I'm weird.  I want to freak people out with it.  I'm weird.  The nurse asked if I wanted her to cut off the catheter part (that went into my vein) and I said, "NO! Why?  I paid for the whole thing!"  She laughed and left it in tact.

I think I'll make a Christmas ornament out of it.  After Christmas, I'll fashion it into something that can hang from my rear view mirror.  What an awesome conversation piece that will be!  Yup.  It was part of my body for seven months.  I'm not going to just toss it aside.  Maybe I'll make a necklace out of it.   Wanna see it?  Do you?  OK, here goes:

See?  That's not gross!  The circle in the middle of the purple part is where they stuck the needle for blood draws and for chemo. It can be pierced over and over and over.  Such a cool little invention.  

That's a "Yes" on Radiation

As I figured, I'll be receiving radiation.  Kevin and I met with the radiology oncologist this afternoon to discuss things.  He's a likable guy who is good at explaining things in an easy-to-understand way.  The most common side effects are fatigue and a diminished appetite.  I can handle fatigue, and my back side can handle a diminished appetite.

Of course, he had to tell me of some more serious possible side effects.  They have to prepare you for anything, but I sure hate hearing those things.  The percentage of a chance of those were quite small, though.  I'll consider myself warned, but try not to think about them.
 
He actually had me go across the hall while we were there for a CT scan and tattoos.  The tattoos are slightly larger than the period at the end of this sentence, and there are two of them.  He'll now look over the scan, come up with a plan for me, and then the technician will call me to schedule it.

I've heard horror stories of people having to pay a co-pay with each daily visit (x38 visits...you do the math,) but that will not be the case with Saint Luke's.  That was nice to hear.  I will have to go to the plaza location for treatment, but that's not as big of a deal as those who live near me may think.  That location is less than 7 miles from work, so I'll just do morning appointments and then go straight to work.

If I understand what my medical oncologist told me at my last visit, I'll have a month between the end of chemo and the time that radiation starts.  That equals three glorious weeks of feeling normal.  I'm really looking forward to some happy weekends.  I miss going to mom and dad's to just sit and shoot the breeze.  I miss getting outside and enjoying this perfect weather.  I miss going to school functions.   Yeah.  I'm looking forward to a bit of normal, even if it's just a few weeks.

Today was excruciating, much like the weekend was, so I've taken some pain meds and plan to go to sleep early.  If history holds true, I'll feel a bit better tomorrow, and the pain will be mostly gone by Wednesday, needing only an occasional Tylenol or Advil.  After that, look out, world!  I'm already conniving to get Kevin to take me to meet up with some friends after work on Friday for a drink.  I am so excited to even be thinking about that!

Now, I have some nurses to email with questions.  *sigh*  I can't wait until cancer and treatment are not the only things I think of.  LOL  Oh, and staying awake until dark.  That'd be a nice change of pace, too.  :)

Chemo Day 6 of 8

I had an appointment with my oncologist yesterday.  I always have lab work and an appointment with her the day before chemo.  I really like her, and I trust her completely.  She's never been anything but honest and open with me.   However, I was in a foul mood when I got there yesterday, and it caused me to leave there mad at her.

I posted on Facebook that I could tell her that there is battery acid dripping from my eye sockets and my arms have fallen off, and she would smile, nod, and say sweetly, "Yes, you're doing great."  Normally, her positive attitude is what I need.  She is gentle and sweet and understanding.  I think the big ol' chip on my shoulder wanted her to say, "Wow, you're having a rough time, aren't you?  Here's a cookie."  LOL

The truth is, she really does think I'm doing very well, considering the side effects.  She sounds amazed every time she asks if I'm still working and I tell her that I am.  I keep saying that, if my job had better short-term disability pay, I'd take off until this was over.  The truth is, though, I'd be in a worse place, emotionally, if I was home all day feeding my pity party.  At least when I'm at work I am solving other people's problems and not thinking about my own.

Today is the day that I could have slept later.  However, Kevin is trying to get some overtime, so he was up early and the light shines in our room, so I was up by 4.  So much for sleeping in.  I have an appointment with the plastic surgeon (it takes fewer than 5 minutes for a tissue expander fill) and then I double back to this side of the state line for chemo.

Chemo day is a relaxing day.  Any side effects don't kick in for a couple of days, so it's not an uncomfortable experience in any way.  I can play on my computer and relax.  I can take lunch there if I choose, and they have a basket of snacks for those who find themselves hungry and ill prepared.  The nurses are caring and sweet and chatty and genuine.  I don't mind chemo day at all.

Three times, others have gone with me.  It was fun to have someone to visit with, although I always worry they'll be bored.  Kevin took reading material when he went, and my friends Brooke and Tammy each took a turn, hiding any boredom they experienced.

Kevin has planned an outing to Red Lobster for Sunday afternoon.  We don't eat out very often, and he wanted to treat us with some of his OT.  That is my incentive to not hurt so bad this time.  LOL  If it's as bad as last time, it'll just be him and the girls.  If I can do it, I'll be going along.  I LOVE Red Lobster.  Maybe I'll start taking pain pills now to make sure it doesn't get too bad.  I'm kidding, but I DO love those cheddar bay biscuits.

Wow, that turned into a rambling post.  When you wander around that much in a blog post, it's time to stop.

The First 24

The first 24 hours in the hospital has been interesting.  They are all very nice here.  I'm not used to being in the hospital, so it's weird, but fine.  The doctor offered me a sleeping pill last night, and I refused.  I've been sleeping fine lately.  Apparently that doesn't transfer to a hospital room.  LOL  She asked today if I regretted refusing it, and I admitted that I did.  I'll take one tonight.

The nighttime nurses are sweet and good at what they do.  I call them Nighttime Ninja Nurses.  The NNNs come in, work by only the light coming in from the hallway, and are back out within five minutes.  I barely knew what was going on before they were gone.

My bed has a problem that causes it to lock sometimes.  The buttons won't do ANYTHING.  The day nurse yesterday knew how to fix it, so she showed Kevin.  I didn't pay attention.  Guess how much good it did me?  This morning, a maintenance guy came in and asked about it.  He said that the beds are getting older and need new chips inside.  They've been ordered but aren't here yet.  Then, he took his fist and hit the control panel!  It fixed it right up.  I laughed and told him that I remember fixing our TV that way when I was a kid.  He said, "So do I.  That's what made me try it the first time."

I slept from 9:30ish until 11:30, 12ish until the NNNs came in at 2, and 2:30 until 3:45.  I called Kevin at 4 (he was already on his way to work, making up time that he missed yesterday, poor guy) and then I tried to go back to sleep.  I was finally successful around 5...and then my cell phone alarm went off at 5:30!  What an idiot!  I forgot that I have it set to go off each weekday at 5:30.  It has been turned off now, for sure!

I told a couple of friends, via Skype, that I wish I had some chips and chocolate.  This afternoon, the nurses aid came in carrying a bag with three small bags of chips and 4 kinds of chocolate in it!  It turns out that my friends do not know this delivery person, and neither do I.  It's a friend of a friend who happens to work here and hooked me up.  It's not who you know, it's who is known by whom you know.  Or something like that.

I've found that some of the food is quite good, and some is not great.  Most of it has been edible, though.  Except the tomato soup.  Ick.  Still, it's overall better than most people describe hospital food, so I'll not complain.  I can't imagine feeding this many people.  Plus, I'm a lot less picky than most.

At one point today, two doctors came in with two shadows.  Students, maybe?  Anyway, as the oncologist was telling me that my white cells had dropped again overnight (I know, I know.  *sigh*) and I'd be here at least through tomorrow, and possibly Friday, she said, "The good news is, you've been afebrile for 24 hours."  My hearing isn't great.  I hear things wrong a LOT.  What I *heard* is, "You've been senile for 24 hours."  Before I could process that enough to be offended, she added, "So as long as the fever doesn't come back..."  That's when I realized what she had said.  PHEW!

My final story is about how I'm introduced as shifts change.  Each nurse is telling the incoming nurse that I'm an ideal patient, or the best patient on the floor, etc, and that I never ring my call button.  That's true, I haven't needed to.  However, do you know what kind of pressure that puts on me?  Holy moly!  What if I need something?  I'll damage my reputation!  LOL   Yes.  I'll push the button if I need something, but I'm ambulatory, so there isn't much that I could need that I cannot get for myself.

Halfway There, and Weird Thoughts

I'm sitting in "the chair," getting chemo treatment 4 of 8.  I'll be halfway done with this part of the journey in about 2 hours.  The drug that I start in 2 weeks is supposed to be much easier.  I'll take easier.  Although, once she got my headaches and sleeplessness under control, I can't say I have all that much to complain about on THIS set of drugs.

I also went to the plastic surgeon today for a tissue expander fill.  He only did 60 cc again because it's been a month and it would have hurt me too much to do more than that.  It hurts pretty dang bad, anyway.  This may be a day that I leave the infusion center, go home, pop a Valium and a pain pill and go to sleep.  Anyway, he says that if I go more often, it shouldn't hurt as bad, so we're only waiting two weeks this time.

I said this on Facebook, but I'm really laughing at myself about this.  Any time I go to ANY doctor, the nurse takes me back, takes my vitals, and says, "change into this gown, the doctor will be with you shortly."  I KNOW that I'm going to sit in that cold room for at least 20 minutes, yet I scramble to change as quickly as I possibly can.  Why?  What's the hurry?  I'm just going to sit there, feeling vulnerable, legs dangling from that paper covered table/bench/bed thing for what feels like DAYS.

I think I'm worried he'll walk in and see something.  See what?  You know, the same thing he's going to make me show him anyway!  What's the point of the speedy-change freak out?  I've been going to doctor appointments by myself for 25 years.  I have NEVER been walked in on, or even ALMOST been walked in on while changing.  How many more years will it take for me to slow down and take my time?

I wonder if they have a set amount of time that they wait, in case someone is a slow changer?  Does the nurse make a note of the time she walked out, so the doctor can wait the appropriate amount of time before coming in?  How long could even the slowest mover take to remove her shirt, remove her bra, put on a gown, and climb up on a paper covered table/bench/bed thing?  Two minutes?  Hmmm.  The things I ponder from the chemo chair.

So Much for 40 Hours

This is the week I was going to work 40 hours.  All I had to do today was seven hours and 45 minutes.  No biggie.  I've felt fine most of this week, and I got in early, so it should have been smooth sailing.  Should have been.

About an hour in, my nose just started gushing blood with no warning.  Well, what an interesting development.  And I was glad I had a spare shirt in my car.  It took over ten minutes to get it to stop, and the whole time I was thinking, "I think this is on the list."   There is a list of side effects that, if they  happen, I am to call any time, day or night.  When I finally got it stopped, I checked the list.

Yup.  It's on the list.  I didn't call right away, though.  I knew the office would be open in less than an hour, and it had stopped bleeding, so I waited until the office opened at eight and called.  I had to leave a message, but I got a call back in under five minutes.  The told me to come in for a blood draw.  I may need a platelet transfusion.  Shit.

They flushed my port, drew the blood, and left the port accessed, just in case they needed to do something, and then the wait started.  The nurse, whom I love, told me they'd put a "stat request" on the blood work with the lab.  I had electronics to entertain me, so I was fine.  After 30 minutes, I heard her ripping into someone in the lab.  It was funny.  She is grandmotherly and sweet and it was funny to hear that side of her.,

After 45 minutes, the results came back and she said all was OK.  I went back to work, knowing I could still get that 40 hours I was seeking.  I worked about an hour and a half and started feeling kinda crummy.  My headache was a bit worse, and then my face felt hot.  I checked my temp and it was 99, so I decided that it wasn't in the cards to get 40 hours this week.  I left at the 38 hour mark.

Now I'm home, in the recliner again, and just tired.  I hope I feel better for the weekend, since this process starts all over again on Wednesday.  I am relieved to know that my blood counts are in an acceptable range. That will make me feel better if any other weirdness pops up this weekend.

(Just so there is no confusion, nobody but me is pushing for 40 hours.  My employer is being amazing about letting me work whatever I can, and Kevin can't believe I'm getting in the number of hours that I am.  I just want to do 40 on the off week, since I'll always be short on the chemo weeks.)

Chemo Treatment Number One

Disclaimers:

• This is a freaking LONG post.  A lot of people wanted details, and boy oh boy did I give details.  You won't hurt my feelings if you bail early.
• There is a TINY amount of blood showing in my port access tube in one shot.  TINY.  However, you blood wussies have been warned.
• There is a shot of a HUGE syringe full of one of my chemo meds that just happens to be red.  I promise you, I would NOT spring a picture of that much blood on you, after warning you about the tiny bit in the other shot.
• My "cleavage" shows, but it's mostly shirt and post-mastectomy sports bra, so don't get your hopes up, pervs.  Takes all the fun out of it, doesn't it?
• These images will not show up on FB.  Not because I don't want to show them there, but because I don't want to type captions.  I'll link to this post there, though.

Today was the day.  I woke up and decided I wasn't going to go through with it, but Kevin made me get up and shower, so we went.  Once again, I was having a major panic attack this morning, and I'm pretty sure Kevin was having a minor one at the same time.  I had forgotten to pack a "chemo bag," so I worked on that this morning.  It was good to have something to occupy my time until we left at 8:30.

At 9, I was to put the numbing cream on my port and cover it with a square of plastic wrap, so I did that in the truck.  LOL  From now on, I'm driving myself to and from treatment, so I may have to rethink that plan, huh?  We got there, and I made 17 trips to the bathroom.  First of all, I'm supposed to push water.  A LOT of water.  I hate water, but I do what doctors tell me to do.  The nerves probably didn't help that situation much, either.

As with all nerves brought on by a new medical experience, I was perfectly fine as soon as the doctor walked in.  She asked questions, made sure to find out if we had any (we had a few, and she answered them to our satisfaction.)  Everything looked good, so she announced that I'd be staying for chemo.  Good.  Another wait may have pushed me over the edge.

I think part of it is the fact that I don't get sick.  I don't take pills.  I don't go to hospitals.  Heck, I don't even get headaches (until lately.)  I've gone from that to this horrible disease that requires horrible treatment which causes horrible side effects.  I guess I don't do anything halfway.  This is my new daily life:

No.  I do NOT take all of those every day.  However, I must travel with most of them.  When I walk into work, my bag sounds like I'm hauling in maracas!  (Mental note: Suggest mariachi Mondays at work tomorrow.)  Anyway, although most of the above are  "as needed," I sometimes need them.  So far, I haven't needed prescription pain medication more than 1-2 times a week at most.  I just don't know what my side effects will deem necessary.

OK, enough of the downer!  My first chemo day was fine.  Parts were actually fun and funny, thanks to an amazing husband making inappropriate jokes and an amazing nurse who explained everything so well that it kept me at ease.  Thanks to the numbing cream, I didn't even know when she accessed my port.  These things were on the cabinet, waiting for me:

The two small vials are for blood draws to check my levels and make sure I'm OK for chemo.  Because they had to wait for the lab to get back to them with the results, Marie (the nurse) asked if we'd like to go downstairs and get something to eat.  That sounded like an amazing plan, except that I had the tubes hanging from my port, waiting for chemo.  She said, "Just drop that down your shirt and go on down."  You can't tell me that, and not expect me to have fun with it:

If it wasn't funny enough that I stuffed it in my bra in my cleavage, we got a real good laugh of the fact that I only have HALF of what you could call cleavage.  The other side was PURCHASED by me, so I guess it's mine, as the implant will be.  So yeah, we'll say cleavage.  LOL  We went on our adventure downstairs to the hospital cafe, and had a really great lunch for under $10 total for the two of us!  (Tight Wad.  Party of two.)

When we got back, it was time to get going.  She hung a bag of (I think) saline, and a small bag of non chemo drugs.  I don't remember what all of them were for, but at least one was for nausea and one was a steroid.  Here is my little starter pack:

At this point, the meds were almost gone.  After each infusion is complete, more of the fluid is injected to "flush" the port.  That's why the large bag.  I didn't even use half of it by the time I left, though.  Then, it was time to get started on the poison chemo.  The Adriamycin is given with two large syringes so they can keep a super close eye on it.  They alternate a few CCs of it and a bit of saline.  I told her I was worried her hand would cramp.  LOL  I'm showing it below, but the drug is red.  That is NOT blood!

When that was done and the port was flushed, it was time for the Cytoxan.  It can hang on the IV pole, so Marie got to rest her hands.  Actually, she was probably in another room doing the same thing for someone else.  Poor thing.  Here I am while finishing up.  Yes, the room was small:

I was playing online.  If you know me well, and have been to my house or followed any images of me, you may be having a nagging feeling that this looks VERY familiar to you.  I can explain that.  I had Natalie take a pictures of me while doing this blog post:

Take away the blanket (we turned our ac off last night) and the IV pole, and I was at home!  Oh, the blanket!  That is ONE thing I forgot to take, which is the only reason I regret not packing my chemo bag earlier in the week.  One of my many distant friends who have sent me amazing packages (seriously, you guys BLOW me away...and kinda make me cry like a girl a little bit...I gotta work on that,) sent the following that she made for me, just for chemo treatments!

She explained her design in her very touching note.  "Zebra print, because you're so "wild & crazy"; pink hearts, because we love you."  It is DEFINITELY ready for my next appointment.  The blankets they have there sucked.  May as well give me a sheet.

Finally, if you made it this long without falling asleep or passing out (that last part was for the wussies,) I will give out a parting laugh.  As we exited the office after my visit was complete, we saw this in the hallway.  I think you can read it if you click on it:

Kevin said, very simply, "Hmmm.  I sure hope those boxes are empty."