"Goin' to California with an aching in my heart...."

Just finished my second round of chemo this weekend on the new regimen and have been feeling fine. No nausea, not a lot of pain. So far, so good. Hopefully this will still be the case in a week for my upcoming trip to California. I leave Thursday, Dr. approved, counts high, and tomorrow I get my Neulasta shot to keep them that way.
In the chemo chair today, was enjoying a mix cd a friend made for me and was thinking how special it is to have people take the time to think of songs they think you'll like and hope you'll enjoy the same stuff they like. It's nice. I love to make music for people, too, but often find most don't appreciate it like I do.
Oh, well, it gives me something to do, anyways, to relieve the boredom. Lately have been crocheting. Self-taught, thank you very much. Well, I have had some help from various library books, but feel I have potential for a baby blanket, which is my next project. So many people having babies all around me, I've got to do something crafty for them. It's nice to get somewhat-amateurish crafty things from that cancer girl who sits around all day and has nothing better to do. Recently, my older nephew asked me what I do all day.....like it was this incredible thing he couldn't imagine. No school, no job, no friends in the neighborhood to call upon, no cool video games....what could I possible do?! Well, I told him, I watch a lot of T.V., which instantly satisfied an "OOOHHH!" from his lips, and told him I like arts and crafts type stuff, desperately searching for something cool I could claim, but coming up quite short. However, once I asked him what he did besides school, he illicited an excited "video game" response, which reminded me, I, too, download and avidly play games on my computer. This garnered small praise and I was back in the loop. He then proceeded to show me some "cool online games" I could download and play without paying.....yay!......
I feel I handled the awkardness of the situation with great ease and tried not to act like the teenager who suddenly felt like the most uncool girl in class, which I did feel to the nth degree. Surprising how one little comment can bring us back to our childhood, desperately trying to fill the void and fit in, find others who have similar interests so ours don't seem so lame.
Afterwards, I thought, geez, he's only 14, what do I care?

The Cancer Card

So, about the cancer card and not feeling guilty: I have been using it to my advantage and not an ounce of guilt I feel. Should I feel bad about pulling out the cancer card to get my way when dealing with sales people on the phone? What about an expired gift certificate to a spa that I had them trade in for a new one because I have cancer and was in the hospital, therefore unable to make any of the appts? Hey, if it works....
I'm not saying I'm proud at seducing the average customer service employee or retail worker by making them feel bad and giving me an advantage, but I kind of feel entitled. You know?

No hard feelings please....

Ok., here's to the few of you who do read this and don't harrass me with a constant barrage of phone calls and emails! My third day of chemo was the worst and I have been in extreme pain ever since. These tumors in my lungs are not letting up and it's hard for me to breathe or do simple tasks like get up and out of the chair. This little bit of motion causes me to be short of breath, which causes pain in my ribs and lungs in my back area. The pain moves all around and I'm pushing all the pain meds I can find, but not much is working. I constantly use the heating pad and I find it's not so bad if I just sit still and don't move. It hurts to even move my arms. Wah-Wah. I knew this wouldn't be a good post, but it's inevitable. All this pain is also making me ridiculously cranky and depressed, so you can imagine how easy it is for my loved ones right now who insist on calling to see how I'm doing. ALthough I love them to death, now is not the time. It hurts to breathe, so talking is out of the question. I'd really like a bit of peace and quiet, which is why i'm posting this, so people will leave me alone for a little while at least. I know everyone just cares so much and it's hard to understand unless you're going through it. It's even harder to explain. I just know that when I'm in this much pain, I don't feel like talking to anyone and no hard feelings please.

"I can't believe they said that!"

Having told my story so many times as of late, I recount the silly things doctors and nurses have said to me over this past year, thinking they provide a comedic effect to the telling. I realize, though, at the same time, it is a bit sad, recounting how our healthcare system is in a bit of a crises. As a result, I'd like to re-tell some of these anecdotes here:

"Gas Pain"- The doctor's explanation of the pain I was experiencing in my side that was growing more and more intense by the day, (which later turned out to be a massive tumor).

"My friend's horse had that!" - A nurse's comment on my Cushing's Syndrome while I was recovering, post-surgery.

"It's a good thing they invented one-piece bathing suits!" - A doctor's comment on the scar across my stomach.

"You need to exercise, you're getting tubby." - Same doctor, commenting on my post-surgery physique, said while poking the side of my belly.

While in the hospital, recovering, post-surgery, I was awakened earl one morning by my nurse. She wanted to show me how she had printed out pages of information from the internet regarding Cushing's Syndrome. Of course, I knew all about it, having had it for the past six months, but was also wondering why this nurse was awakening me at 4 in the morning while I had been so peacefully asleep. Sleep was hard to come by then, too, after such major surgery. This same nurse began to talk to me, innappriately I might add, about her shocking life story. And I fiegned as much interest as I could muster at the time.

sick at 3am

Let's see, it's almost 3am and I'm wide awake. Have only been able to sleep off and on all night. Damn frogs have kept me up along with lack of my regular Ativan. Of course, the minute I awake and start walking around, I get sick to my stomach and spend the rest of the morning trying for cures to soothe my tummy. Right now, I'm watching Fullmetal Alchemist (more on the anime later), doing my best to update my blog and drinking Chammomile tea. (Funny story: I had a past ex who pronounced it Cha-mow-lee).

On another note, I've been thinking about the benefits Kris Carr discovered through the use of wheat grass and I've been wondering if something similar wouldn't be of advantage in my case. The only thing is my stomach is so sensitive, I'm not sure if even some kind of vegtable juice would do my more harm than good.
ugh! More sickness.....more later

R.I.P. Pinky

Poor Binky. He led a good life as a pink and hairy mouse-like creature who entertained Oz for hours, content as he threw him up in the air, to be caught again and again in the jaws of that orange mouth. No one could have been a better friend to find nestled between my pillow and bedsheets, a present or a hearty snack from my red headed son, Oz.

However, Oz does not think of him as dead, he merely has obtained a new look....a haircut, perhaps. He wanted him to look more like his mama...we all love a shaved head, after all. (I think he now looks like Piglet from Winnie the Pooh)

SPEC....TAC....U....LAR

Have not felt like writing in so long. So much going on: hospitals, meds, delirium, exhaustion. Moments worth mentioning: I watched Crazy Sexy Cancer and loved it! She truly shows what a difference your mentality can make when dealing with what life throws at you. Her spirit shines through and it is important to let this remain true and to not to let this cansur thing destroy you.

I've recently made contact with a couple of people who are my age with cancer or who have beaten it and I recently asked one of these friends who had beaten her disease at a young age, "How did you stay strong?" She responded with saying that strength is not being positive or putting on a smiley face all the time, but instead strength is making it through the day, fighting, and not letting cancir take your spirit away. This is why I like Kris Carr's approach so much, b/c her focus is so much on the present moment. What she can do, day to day to keep her spirits up and survive each and every day. This day to day survival is key. That's what I am striving for. To keep strong, I'm just focusing on the now, the present moment. In this, I think I will find I can be strong from moment to moment.
It's nice to finally have people I can talk to who have gone or are going through the same things. It is so hard to relate to regular people anymore. I don't know what to talk about. My life is this canncer. They have normal lives with normal problems. I know everyone has their burden to bear, but it's not the same. They're not part of the "club". I should be happy for them. No one should have to go through this. I hear this all the time. I get tired of it, actually b/c I know it's true but there's nothing I can do about it. There's nothing worse about all of this than it not being within my control. Kris Carr (again!) is an example of a woman who took her disease and took control through her diet, exercise, and turned her experience into an amazing documentary and even created a book. She's what I aspire to. Most days I feel like a lump on a log, not doing anything about anything, just watching T.V. But really, just the fact that I didn't have a mental break down today is a blessing. The fact that I got out of bed is good enough for me. If I do anything out of the ordinary, like make some jewelry or draw or paint, it is spectacular!
P.S. Kudos to all those who got the American Beauty reference!