I'm still here

First let me say "thank you" to Dan for filling in for me on the blogosphere. I love the way he writes and thought it would be fun to get his perspective from time to time on this blog. He gets to go through this whole cancer ride as well.


I have been able to eat some Ensure, banana smoothies, pudding and chicken soup. 
We talked to the oncologist on call on Monday afternoon since my Dr. is still on vacation. He stated that everything was very normal, and I didn't have any sort of infection or anything.


Well suck.


He also stated, however, if I continued to not be able to eat and my counts got too low, I would not be able to have my second chemotherapy as planned.


Well suck again.


Lord knows right now I don't want to do chemo ever, ever again. 


I wasn't prepared mentally. I was too naive of what I thought was to come. I thought I had researched enough and knew all the side effects and how to avoid them. But chemo really sucks. Just all the time, it really sucks. But in no WAY am I going to let this thing string out any longer than it has too. 


So next time I will go in more prepared. I will drink sooo much water I will float away. This will hopefully get the toxins out of me faster which should help my mouth hopefully next time. I also know what to expect now and I have pain meds at the ready. I just kept expecting to wake up and be all better. Like having the flu and getting over it. What I now know, however, is it is going to be a managing game. Managing how much I can eat and drink. Managing my pain meds and staying on top of the doses even if I start to feel better.


I have some battle scars, but I am not close to being battle weary yet. 

A letter from the editor:

Several years ago Julia asked me for advice for dealing with someone in her life.  What follows is a paraphrasing of our conversation.  In fact it might all be fiction.  I can't remember that far back.  (CRS syndrome)The details of the person, and the interaction, are not important.  What is important is that for a fleeting moment of brilliance I was able to offer the one thing that we all too often fail to provide.  Good advice.

"Different rock, same stream."  I said as casually as if ordering off the dollar menu.

"What?" Julia asked.

Upon recognizing the simplicity in design and beauty in it's function I restated the theorem as a mathematician may do when revising a soon to be published paper disproving euclidean geometry.  (It's true what Julia says.  I think rather highly of myself.)

"You know.  Same stream.  You're just on a different rock."
This left Julia with a puzzled silence.

I share this story with you because I've been revisiting the idea and deciding whether or not I still believe it.  It would be hard to find fault in someone that becomes angry at the world after cancer enters their life.  I would also be empathetic to someone who discovered envy towards everyone who didn't have cancer in their life.  Our view of our world is almost always based on the people we see around us.  And this was the point of my advice given to Julia years ago.  It's easy to be jealous of the person that is standing on "new-truck-rock" when you look down into the stream and realize that you're just standing on "every-day-life-rock."  We're still all standing in the same stream.  While I don't have enough time in this post to discuss whats on the other bank of this stream, I do need to emphasize that it's all one stream and we get to hop to different rocks.

Julia is standing on the cancer rock.  I'm proud to say that I'm standing on it with her.  It took actually watching chemicals being injected in to her before I realized that I wasn't on the "every-day-life-rock" anymore.  But we are here.  And this is happening.

And that's when I started wondering if I was angry at cancer.  It's this stupid little thing that gets to feed of lives that we have worked so hard to have.  So I've decided something.  It may be naive but I'm ok with that.

The cancer rock isn't where cancer lives.  The cancer rock is where cancer fighters go to prove what they are made of.  Unlike cancer, the cancer rock is huge.  It's big enough for our dog to come.  It's big enough for a three hundred fifty square foot deck.  It's big enough for a church congregation to make a quilt.  It's big enough for a few portable air conditioners.  I hear Texas is big and I'm pretty sure it could fit on this rock.  It's big enough for fear and it's big enough for hope.

And these are the things I tell myself when I'm feeling angry.
I really have nothing but confidence that Julia is going to be healthy.

Just because I wish we were standing on a different rock doesn't mean that we don't have everything we need right here with us.








ps...here is a more extensive list of the things I see on the rock with us.  Feel free to add more things in the comments if you wish.
moms, dads, sisters
friends
babies with adorable plaid pants
dogs that smell like dogs
the kind of people that bike around the world
employers that are far too gracious with their time off
musicians and music
tractor tires
new tvs!
black dog smokehouse
talented doctors and nurses

Things I wish I could eat right now...

-Fried Chicken
-Pancakes
-Strawberries
-Bacon
-Egg Salad
-Pizza
-Pasta
-Cereal
-Oreos
-Pickles
-Chocolate cupcake

-Anything solid

-Anything that isn't ice.

Cause that is all I have had today! Just ice cubes. Even ice water hurts right now. 

 

By Dan, who is really getting good at figuring out what I am 

trying to say while moving my mouth as little as possible. 

I got down some soup last night, but that has been it. Of course no one is in the Dr.'s office except the patient advisory nurse and she says I should just go to convenient care. 

No thank you! 

I would rather hold out for Monday and hopefully talk to my oncologist since he is kind of in charge of me right now.

Dan went and got me some Biotene mouthwash, and that has helped some. I am going to take two (!!) hydrocodones when I get home from the museum and hopefully they will help me be capable of eating something for dinner.

Too bad I have absolutely no nausea, but can't eat a darn thing! I really miss food! 


This could help me from getting fat and bald though! 

Good news, looks like my hair is still growing, though my scalp has been a little tingly. Checking out two other wig shops later this week and picking something out. Even if I only wear it in public, or on the weekends, I would like the option of having hair at some point.


Right now think soothing thoughts in the direction of my mouth. I am really hoping I don't have to go through this after each treatment. Or at least it will all heal up before the next treatment starts.


At least we know the chemo is working!

Day 2 Post Chemo #1

Mouth. Sores. Suck.


Olympics on HUGE television are AWESOME!


All done with Grad School semester uno.


Got B, A, and A (I think)


Mouth. Sores. SUCK. (Magic Mouthwash and Hydrocodone are helping)


That is all.


:-P

Update after chemo #1

Just to let everyone know I am feeling pretty good today. I took my steroids and anti-nausea drugs even though I felt pretty good this morning.


I woke up at 4am just completely wide awake, which I think is a side effect of one of the chemo drugs I take. I will make sure to take a sleeping pill after the next chemo.


I feel good though. Wrote a lot of emails and talked to Comcast and my insurance company today. Both had good news for me! Comcast is going to give me a discount on cable, since we don't have it, but I only want it for four months. My insurance company is going to pay up to 250 dollars for a wig, so double yay!


I am getting ready to shower and go get that pedicure I never got to on Sunday. I am looking forward to leaving the house for a bit.

With the weather looking like it does for this weekend I think you will find me out on my deck for the whole of it! Very exciting!


So feeling good but a bit apprehensive for what the weekend will bring side effect wise. The doctor said my worse days would be Day 3 and 4 after the chemo. But Dan will be here, and he always takes great care of me!


Thank you for the emails, notes and texts of support and love. I appreciate every single one!




If this is any sign about how the chemo will go I can TOTALLY handle this! 

First Chemo Down!

Just finished my first chemo. We arrived at the hospital at 7:30am and were able to leave at 4, so not too bad.

My chemo uniform!

They drew my blood from my port this time, which since it was still swollen and pretty bruised it did hurt, but not as bad as getting stuck 7 times looking for a vein.

And this is why I wore a scarf! Didn't want to freak anybody out

with weird tubes coming out of my chest!

We went and got some coffee and breakfast and were back to start the chemo at 9:30. I didn't meet with an oncologist this time since mine had to suddenly go out of town. That is why the nurses tried to cancel the chemo yesterday. Luckily we are able to do it today even though I didn't get to see my doctor. 


They started me with a TON of anti-nausea meds, which made me a little nervous. How bad was this going to make me feel that they used not one but two whole bags of anti-nausea drugs?? 


Once they had finished those they started pushing the chemo drugs. The anti-nausea meds made me a little sleepy so I began to drift off before they started pushing the drugs (which means a nurse sits there with a big syringe full of chemo drugs and physically pushes it into my IV). Since some of the drugs caused a bad taste I ate lemon heads by the handful while they pushed them. Another drug caused mouth sores so at one point I was stuffing in spoonfuls of ice followed by a chaser of lemon heads. It worked really well at keeping everything at bay.


I found this video awhile ago and showed it to Dan when we got home from chemo. We both agreed that this was a good representaion of how chemo kinda worked. Especially the beeping machine, the weird taste in your mouth and the jokes about the pronunciation of drugs. Warning, there is some grossness at 4:26 so skip over that Dad! :) [editor's note: not all of these symptoms were present today but the logistics of receiving this kind of treatment is spot on]

This guy is younger than my sister and had bone cancer 4 different times.

He is hilarious and you should check out his blog:

 http://www.woodyroseland.com/index.php/blog

I just ordered his "Suck it Cancer" t-shirt too! :)

After they were done pushing all the drugs I got my last drug which was just an IV bag that dripped in. That took about an hour and half so I slept through most of the afternoon. It was nice to finally relax after worrying about weird tastes and mouth sores.

Finally sleeping under my comfy and beautiful new quilt!

After I woke up when the final drug was done dripping I looked in the mirror. I looked weird!

I was very pale and looked awful. But I felt pretty great. I was starving since I hadn't eaten anything since breakfast and didn't feel tired since I had slept over an hour. Dan immediately got worried, but the nurse explained it was completely normal to be that pale and my color would slowly come back


My nurse was funny, in the sense that every time I got a red spot such as on my chest or arm she immediately began to ask me questions about it. She was worried I was having an allergic reaction to the drugs. We tried to explain I just had very sensitive skin and this was really normal for me. By about the fourth time it happened she began to believe us! ;)

My chemo bag came in very handy. I used everything except the laptop so I will skip that next time. My next chemo isn't until August 8th. I shouldn't have to go to the doctor at all before then. I work a little at the Orpheum this weekend, but don't have too much going on. I will try and keep busy and not wait around for the side effects to start. Hopefully with all the anti-nausea drugs and steroids they gave me I won't feel bad at all.


One down! Seven to go!
[editor's note:  go julia!]

Getting Ready for Chemo

So yesterday I had my port installed in preparation of chemo starting on Wednesday. We went in at 9am to have my echo-cardiogram.
It was super easy. They just did an ultrasound on my heart and I was good to go.
My port surgery was scheduled for 11, they didn't call me back till 11:30. Then they hurried and got me prepped.  They took my vitals, started an IV, and asked me all the pre-surgery questions. But we didn't see the doctor until 2:30. I laid there waiting for the doctor for 3 hours!


Killing me docs.

Dan is my meme genius

I finally went back for surgery and was out by 4 o'clock. It was more of a twilight sleep but I wasn't as out of it as I was for my bone marrow biopsy. My face was under some draping to keep the surgery sterile and the doctor thought I was out. Then I would pipe up with a question I had and he would ask the nurses "How many milligrams have you given her?"
I got to enjoy morphine, versed, and something else with a long name. I could feel him pushing on my chest pretty hard, but nothing else.
So after all that was finally over, I was taken back to recovery. I kept insisting I felt great and I wanted to go home. Well I really did want to go home, but I wasn't feeling completely free of drugs.


Luckily I was able to go home pretty quickly. I thought I would go with Dan to Best Buy to get our new TV, but I wasn't feeling up to it. So I slept for a couple of hours and Dan went to get our TV. He was able to set it up around 10pm last night and it looks great!

Soooo big!

 I took 2 hydrocodone since I was in a good amount of pain from the surgery and I slept for 14 hours straight! That's right.  I fell asleep at 11pm and couldn't move even though I occasionally would wake up.  I felt drugged and inept until about 1pm this afternoon. 


So I will stick with 1 hydrocodone from now on.


The scar right now looks pretty wicked. I am afraid to scare you off so I won't post a picture.
It looks worse than my lymph node biopsy plus there are 2 scars. They unfortunately had to put it on the other side of my neck. I was hoping I could keep all my scars on one side of my body, but it was a no go. Sigh.[editor's note: the scar doesn't look that bad.  It's just fresh]


Tonight I am getting my chemo bag ready.


We'll be at the hospital starting at 7:30am to get my blood drawn and then will probably be there till around 3ish. I don't know what to expect, but I have read a lot about other patients who have gone through the ABVD chemo regimen. 


Here are the things you will find in my chemo bag:

I have my laptop, nook, water bottle, lemonheads, candy, my chemo "uniform" and a quilt. And my 

iPhone of course, but I am using it to take the picture.

My laptop and nook should keep me entertained. They have wifi in the chemo infusion room. Woop woop! I am bringing lemonheads since some of the medicines give you an awful taste in your mouth. The candy will hopefully help too. The water bottle is for a bunch of ice water to keep sores from my mouth. At the bottom of the bed you will see my chemo "uniform". 

I read about this in another chemo blog and thought it was a great idea. Every chemo, every other Wednesday I will wear this one outfit. I'll add a sweater when the weather gets cold, but its a long skirt with a tanktop and a long scarf. It should last me through my last chemo in October. At that point I am going to burn it. Yep! Torch the thing. Then I don't have to worry about hating any of my own clothes or wondering what to wear each time I go in.

 At the top left you will see a quilt made by a lovely lady at my parent's church. Everyone at my parent's church has heard about my story and wanted to do something. They also heard hospitals can get cold so they thought a quilt would be a great idea.

Each member of our church  picked a piece of fabric to add.

This way I can be wrapped in love throughout the chemo. I was amazed by this outpouring of love. I need to especially thank Sheryl Otter who put it all together and sewed it for me. I will cherish this quilt. Thank you so much!

So that is that. Dan and I are as ready as we can be. There was a scare that the chemo wouldn't happen tomorrow, but everything is good to go now.

I am not exactly excited, but it will be great to finally start working at killing this thing instead of being in a holding pattern, waiting.