"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!

TLC Aug 29th at 9pm

I had written Kriss Carr, author and filmmaker of Crazy Sexy Cancer, an email stating how alike I think we are and how much she's inspired me, etc and I got back this amazing response:
"Hey toots! I love your blog girrrl. Keep writing and so will I. It's our salve. You are down right gorgeous, crazy and sexy in and out. Thanks for writing and telling me about your world. I'm sending you mega love.
Peace and veggies
Kriss Carr"
Be on the lookout for the showing of her movie, CrazySexyCancer on TLC, Aug 29th 9/8c!

More talking food....

Tonight, as I sit and watch Little Women, I am drinking my Yogi Ginger tea. It is then I notice the tab attached to the tea bag, it says, "Wisdom, character and consciousness conquer everything."
Very wise, indeed.

Jo, from Little Women is one of my favorite literary characters, next to several of Jane Austen's invention.
On the playground, I was always "Jo". The other girls had no idea what I was talking about and thought I was strange.

More at Border's

I try and read some at Border's: Sylvia Browne, random Gnostic texts, and even an interesting guide on visualization. I become absorbed in watching other people around me, picking up bits and pieces of their conversation, but only really notice the elderly man sitting next to me. I've seen him here before. Recognizable by tattoos on each forearm, assuming from his veteran days of war. Navy, I guess. I then find an even comfier spot, hidden in the stacks of books, reading about the afterlife by the acclaimed psychic and feel warmed and curious about what lay ahead of me. Right or wrong, my teachings from when I was a little girl display their disapproving heads in one succinct nodding motion: "No, no. There is only ONE way to heaven." Sylvia doesn't believe in "heaven," but an afterlife called the Other Side. The Other Side where we plan out contractual arrangements to live life on earth with various lessons to be learned. Our lot in life is pre-determined, but with supposed ample options for us to take, never going back on the free will promise we're given as humans. I decided against buying both books, but am enraptured enough to reserve them from the library once I get home. I get home to my waiting Oz and he briefly greets me, pretending he didn't miss me or cry for his loneliness, but I know he did both. I then go crazy for a little while, trying to watch bad T.V., being successful for an hour or two, content even. But then it gets to me. This being alone in the house, by myself, nowhere to go, nothing to do. Unable to feel fully energetic enough to do anything about it. I try to stretch and do a couple of yoga stances, meditating all so briefly. Does it work? Well, cut to present time; I am here now, writing away about nothingness and, yet, seemingly everything for me. This is my life and I am not content. I hate being at home all day by myself, listening to the phone ring, never showing any signs of answering it. Occasionally stumbling out of the recliner to chase the cat off of the counter, willing him to play with me or at least let me cuddle with him. At times, he detests both. I think Oz gets sick of my company. He needs adventure as much as I do. Perhaps he needs a kitty companion. Perhaps I try to fill my life with numerous things, seeking to fill the un-fillable and solve the unsolveable.

Links I like

Check out this link: http://www.cafepress.com/planetcancer
My fave tees include: "Cancer, there are easier ways to build character." and "I had cancer and all I got was this stupid t-shirt." Thought the thong was kinda' funny, too.
Also great gift ideas: http://www.gotcancer.org/store/cafe_store.php?catid=2

Also must check out these TOP 10s! They are too funny: http://www.planetcancer.org/html/cancertainment_type2.php?cat_Id=4

My life in a nutshell....

Today has been full and a bit rough. I thought I'd go out and accomplish some coffee-drinking and blog-writing, so I headed off to Borders with laptop in tow. However, I couldn't get online, so I decided to write, journal-esque, instead. I got a lot accomplished. I ate my overly necessary sweet treat while drinking an overly large iced latte and wrote and wrote about the human condition, religion, dating, and, of course, canSer. (Oh, I am copycatting Chris Karr and intentionally misspelling the word so as not to give it power!)
As I've previously said, I want/need to take an active role in my own survival, which includes my own happiness. While my brilliant doctors are in charge of my physical survival, I do indeed have control over my mental state. I rant and I rave, but keeping my head above the crashing waves is essential.
In my journal, I explored some new avenues, such as dating. It comes up from time to time. Especially when my friends have relationships or are in the dating scene, I tend to wish for that same companionship and adventure. How would it begin, though? From my hairless appearance, it is obvious to that something is wrong with me. No hair typically indicates a grave Sinead O'Connor obsession, a rebel grrl trend, or cancuur.
However, the idea of dating keeps rearing its ugly and unimportant head. As I went out last night to Wild Oats, organic grocery store, I was later told by my giggling compatriots that I was being watched....and....smiled at by the super-cute dread-haired hippie boy that worked there. Apparently, he was stalking around wherever we were, watching, and looked like he wanted to talk. I, oblivious as usual, did only notice him once and quickly dismissed him. After the fact, it was brought to my attention and I then became the giggly one. I haven't been drawn to anyone in quite awhile. I look, don't get me wrong....but I have cancer. I can't date anyone! Who would want to date a person with cancer? I sure wouldn't. I was recently discussing this with a more than understanding girlfriend, and she confirmed this fear. It's obvious I have cancer, so what is this attempt to smile at me or even flirt? Cancer is not to be taken lightly, and dating is. So, the two, therefore, do not gel together. Cynical? Perhaps.
I have yet to find a positive side to this until recently. After reading more of Chris Karr's book, Crazy Sexy Cancer tips, she goes into dating after diagnosis (D.A.D.) and how she tried to hide the fact, but found her lucky "one" that accepted her without hesitation. Will I be so lucky?

More importantly, why do I care? The more I hear about my friends who are dating or in relationships, the more thankful I am that I'm not involved in that whole mess. But, (sigh), a part of me craves that attention, someone to flirt with me shamelessly and declare to the world the beaming nature of my light and energy and rapturous beauty! Um, no, not really. But how about a companion who would be nice to me, smile at me and manage not to stare at my head, not pity me, someone who doesn’t smell, who would understand when I was having a bad day or was tired and had to go home. I realize that this is basically a girlfriend. But, wait, I have these! Hoorah! (They might need to work a bit on their shameless adoration, though.)

Alas, the logical, cynical part of me realizes how trivial these dating desires are, but it is nonetheless a real, tangible feeling. I needn't ignore these! I am trying to allow myself to fully feel and shouldn't censor my emotions. If these are emotions that are coming up, then I need to allow them to surface, focus on them, and then let them go. A kind of Zen way, if you like.

Sidenote: at Border's, amidst the business of writing about these and other deep references harbored in the darkest recesses of my soul, I also counted the number of lip glosses I had in my purse....

....the answer is five.

gone today, make-up tomorrow?

Today, I bought some delicious makeup: lip gloss that smells like Vanilla Frosting! And, of course, several other necessary items. I'm preparing for my eyelashes and eyebrows to fall out, so I bought some fake eyelashes and an eyebrow pencil. Some things are just necessary in life. Forget about drinking green tea and checking my temp, I look forward to the completely unnecessary, (but really necessary), futile, shallow things in life. It's the make up that makes it all worthwhile. Oh, I also looked at scarves, but Wal-Mart is sadly lacking in this capacity. I need to hit a good thrift shop. Have also fond craving for fun new wigs.

my day....

Today, I decided to untangle my necklaces in my jewelry box.

Osbourne

Today, Oz-bo has been chasing invisible enemies across the kitchen floor. He loves to dig underneath the carpet pieces in front of the fridge and kitchen sink and get underneath them and then scurries across the kitchen floor.

He has also lost something underneath the fridge. He reaches both paws underneath there, looking and looking for something. Then, he cries and cries b/c he can't find it. He's talking to the fridge.

Notice how askew the rugs are....

Crazy, Sexy, Cancer!

The other day, I discovered Crazy, Sexy, Cancer, a video journal/documentary of a woman's struggle through cancer: http://www.crazysexycancer.com/home.asp Check it out! It's amazing and you must, must, must watch the trailer. I cried.
It got me thinking about what I'm actively doing to fight this disease. And I don't mean the Western-medicine way that I'm already actively involved in: chemotherapy, pills, etc, but I mean in the emotionally-feeding/artistic way, a way that might boost antioxidants or calm my psychoses. I've been recently looking into meditation and yoga, although movement is difficult for me right now. I've also been reading a lot about visualization and breathwork and the importance of oxygen and to breathe deeply.
Although, I am not actively searching alternative therapies, I also feel like I'm not creating a survivorship or doing anything within my creative realm to defeat this disease. Except for this blog and a letter-writing group I created on MySpace, I don't really feel like an active participant in my treatment. It's all decided for me by doctors. This is probably the worst thing that can happen to a person, lost in their own lives, few ways out and fewer and fewer options. There is very little I can do physically, but I guess the whole game is your mental outlook.

So, I've decided to start, been inspired by Crazy, Sexy, Cancer, a video journal. Perhaps I'll be able to post it on this thing. I'm not really sure what I'll be creating, but through all this soul-seeking and self-investigating, I need this. I need to create something for myself. And perhaps for others, too. I would like to, ultimately, create awareness regarding cancer, adrenal cancer, and young people and cancer. But first, it's all about me.
Everyone's aware of breast cancer and there are limitless amounts of groups, stores, support, money, etc. to show that support, but where is the concentration on other cancers and the young women affected by them? Cancer support is either for pediatrics or the elderly. There's that twenties-something age gap that needs to be addressed. At my hospital where I receive treatment, I asked a social worker about support groups and while there were plenty for breast, ovarian, etc, the "general" cancer support group was discouraged b/c apparently not a lot of people show up. I was discouraged for coming b/c sometimes only a couple of people show up or maybe five the next time. I was really disheartened, so on the advice of a friend, I have been thinking about starting a group for the younger population. Not sure how this will pan out. But ideas are always inspiring to get me off my butt and do something.

Chemo days....

I am currently on a regimen of Taxol and Cistoplatin, which are both very common drugs used to treat a variety of cancers. The theory is that b/c it's so effective on other types of cancer that it will be as equally effective on adrenal cancer. (In fact, because it has never been specifically proven to work against adrenal cancer, my insurance company had the nerve to claim that they weren't going to pay for it b/c it was unnecessary in my case. Well....yeah, of course it hasn't been proven against adrenal cancer....what has?! Nothing, because it is such a rare disease that has not had the opportunity to be well-researched or tested by many drugs! Anyways, that issue has thankfully been resolved by my oncologist sending reports on my case to the insurance company, etc. and the pre-cognition of Karen sending in paperwork for financial assistance with the hospital, which was approved just a few short weeks before the disastrous news.)
Anyways, I go in for my next CAT scan to (hopefully) affirm the tumor killing effects of these new drugs in another three weeks. So, cross your fingers. Pray hard. Send me positive energy or healing light...whatever you do, do it!

Yesterday, I was at Moffitt for 8 whole hours waiting....undergoing chemo....more waiting....and then a Dr. appt. Luckily, my laptop was able to obtain internet access, so I amused myself online by sending funny emails and crazy Oz pictures for awhile before becoming teeth-clenchingly bored.

The pre-chemo medicine they give me as a substitute to Benadryl really knocks me out! Funny, because the reason they don't give me Benadryl is because I'm insistent that it knocks me out! Anyways, it is a type of antihistamine b/c one of the chemo drugs I'm on, Taxol, can create an allergic reaction in some people. So, I'm wired for the first few hours I'm in the "chair" b/c of the steroids they pump me full of prior to the chemo drugs and then I zonk out, barely conscious when they are unplugging me and sending me on my way six hours later. (Geez, "unplug." I feel like a robot!)
Then I had to go downstairs to see my endocrinologist. I waited for one and a half hours for an appt that only took 5 minutes! Good news, however, my cortiosl and testoerone levels are finally normalizing. He showed us a graph mapping out the months that I've had Cushing's syndrome and it was amazing to see the lines from each graph plummet to the bottom from what were once very high and dangerous levels.

Needless to say I was exhausted and in a lot of pain. I was so worn out that I could barely keep my eyes open when I got home. So, I went to bed after taking some pain meds for my back and after begging Karen for a massage.
And that was my chemo day.

midnight snack

I got out of bed to satisfy my cheese and pickles craving......watched Tegan and Sara on Conan....."surfed" online on MySpace.....do people surf online anymore? What about walk? or run? or bicycle? I biked online today. Today, I didn't do anything but skate online...hhmmm

I've been watching the original Hairspray, and.....

Funny that someone would re-make a John Waters' film......what's next?

Experience! Declare! Find and Discover!

Seems as if I should be having more regrets or wishes for things I didn't do or haven't done or experienced, but to be honest, I don't have many. I have the general sense of not having done or accomplished everything I wanted to, but it's taken so many others to point out how much I've lived, loved, travelled, explored, and experienced. Thank you to those dear friends, you know who you are. And the truth is, as ambitious as I am and was, there will always be the undiscovered, the yet-to-be-experienced, and the undeclared.
So, is it really worth my time worrying about what has not been or is it better to remember what was? Obvious to some, but unavoidable for others.