Fear Is Creating A Living Will, A Health Care Proxy, A DNR, A Bucket List And A Who Gets My Stuff When I Die At Age 42... Part Two

Fear is a doctor telling you "This is life threatening. If these stitches don't stop this bleeding, you are going to have to go right to emergency surgery that may or may not work. We won't know until we're in there. I'm sorry."
Fear is an uncontrollable fire hose of blood spurting a steady steam 6 inches up into the air. Blood that is coming from your body. Copious, unbelievable amounts of blood. More blood than the restaurant scene in Kill Bill when Uma takes out 200 fighters single-handed.
Fear is setting an alarm to go off every 3 hours at night, all night, for 3 weeks to check that there is no bleeding. Remember my stoma has no nerve endings : it is part of my intestine outside of my body. I cannot always decipher what is happening with it. At least the times coincided with my pain and anxiety medication schedule.
I want MY medication, Nurse Ratchet! MY medication!
Fear is the flash backs to these images when it is oh-so-very-damn-dark in the morning. These images need to be in the rear view now, not still happening over and over in my head.
Sometimes fear is False Evidence Appearing Real. But the actual feeling of fear is very much real and very much happening, PTSD, anyone? It sucks.
So, my last entry covered ER visit #1. Let us move forward the next day or so to ER visit #2, ok? Please understand the whole week it was happening passed in a blur. I have NO memory of being admitted for 3 days. None. Zed. Zilch. Code Zero.
This is also very, very, very hard for me to write about. And that accounts for part of the reason why it has taken so long to get this update out.
Plus, for the past 9 days or so, I have felt like shit, needing 24 hour care for the first time since that week or 2 post-op back in September. Good news is I made it through Round #9 of chemo.
I am going to 'Be Continued..." this entry as I want to get some infor out to everyone who has me in there thoughts. I know this is a bit of a doom and gloom post but I AM OK, just been a bit challenging lately.
Please continue your good, healing wishes to me, I need them. They are helping me to find new strength, hope and courage I wasn't sure I had.
All my love right back at all of you : my light-houses, my friends. Thank you.

Catherine And The Terrible, Horrible, No Good, Very Bad Week....

It's blurry and furry. And druggy and muggy. Scary and hairy. Exhausting and teary.
(I think) it was Tuesday the 21st, could have been Wednesday, about 10 at night when I coughed deeply and a steady stream of blood burst out of my stoma, hitting the wall. The bleeding was severe : a garden hose on full blast while a finger is held over it.
Saturated two surgical gauze pads, 3 wash clothes folded into quarters and 2 folded dish towels in under 5 minutes. I told Dan he needed to call 911 as I was bleeding out. Fortunately, I'm not on blood thinners.
The ambulance arrives. I am still bleeding heavily, just keeping steady pressure over a wound the size of a pencil point. Serious. Small opening, big bleeding. Being carried down a flight of stairs on a stretcher and being flipped sideways to make the corner, is a very weird experience. We arrived at St. Peter's. Odd because I usually go the the ER on Fridays, never mid-week. The EMT's had taken over the bandage and pressure job, leaving me to cry freely in fear and pain. There was a lot of blood.
I received three blood transfusions by the time I was discharged on Saturday the 25th. Crazy.
Back to the hospital, the bleeding stopped, eventually. As will this post. To continue talking about ER visit #2, the admission and ER visit #3 today.

Good news, I gained 6 pounds and have broken the 100 pound barrier.

Weighing in at a hefty 103.2 pounds. Blood work is still good, though I've gone anemic again. Steak and spinach for dinner me thinks.
Bad news, my chemo (Round #9) was postponed until my stoma heals. It was cut into by an ill-fitting bag and since the stoma has no nerve endings, I did not notice the damage right away. It has been injured for almost 3 weeks now and they have been a very miserable three weeks. Worse than the surgery, worse than the chemo, worse than sailing upwind in a Newport30.
The reason my stoma is not healing in a timely manner is a chemo drug called Avastin. Excellent for starving the tumors from their existing blood supply and preventing the tumors from forming new blood vessels but not so awesome for helping the body heal wounds.
Everything has been put on hold. It's getting to be a real problem. I am due for a CT scan but the contrast is a laxative and I just cannot deal with the output that will bring. No frickin' way. But prolonging the chemo is a bigger concern.
I saw my surgeon Friday the 17th and she cauterized the cut using silver nitrate. But it opened back up again the next day. There's lots and lots of blood. I'll saturate a folded gauze pad and a washcloth folded into quarters in a matter of minutes. I spend a fair amount of time applying pressure while watching bad tv.
On a side note, I especially like The Price Is Right, Rachael Ray, The Bachelor, Grey's Anatomy and Jeopardy.
The kicker is that there is not much the doctor can do. It just has to heal. That takes time. I'm running low on patience for this.
But, as my friends remind me, just keep moving forward, hold fast, don't let the bumps in the road take away my focus on the end goal.

Hiberation. Constipation. No motivation.

While the mild winter we are having is delightful: temperature and heating bill wise, I am missing the snow that is usually here. It's a good excuse for staying house bound.
My apologies for so much time passing since my last update. Pure laziness, a minor OD of Fukitol, a bit of denial that this is really happening to me, feeling like I had hit bottom and was stuck.
It wasn't the bottom. I'm not at the end. I'm going up and forward and out.
I've made it through Round 7 and 8 of chemo. My blood counts continue to stay elevated and the Avastin is treating my kidneys well. My tumor markers are down from 2600 to 1300. That's a sign the chemo is working.
I have a CT scheduled for Thursday, February 9th. Scanxiety! Just have to wait and see. Boy, I can't wait to drink the orange flavored contrast. So delicious!
The only body issue I have is what is known as a 'skin flare up'. Google 'stoma skin flare up'. It's a drag. Perhaps when I am not shitting into a tissue in my hand, it won't be so mortifying for me to write about. Luckily (??) my constipation is making me produce hard little roundish bunny turds. Easy to contain. My reality is much much different from yours at this time, trust me. Nothing to do but wait for skin to heal so I can attach an ostomy bag.
House bound. Hibernating. Overall, I'm managing alright, the weed is good which makes the food good which makes the naps satisfying.

Friday And The Emergency Room

I hate the hospital. I hate the cancer. I hate what is happening in my life. There. I said it. These past few weeks I have felt depressed and discouraged and really on the down low side of things. Lower than low. Beyond low. Maybe it has to do with it being the darkest days of the year, which are behind us now or that my self-pity and wallowing got a bit out of control. Or because I am so frightened. I am so furious, wailing over the unfairness of it. I know life isn't fair and you play the hand you got dealt the best you can and all that fuckery, but this really is unfair. It sucks. I'm only 42. And I allowed these thoughts to get the best of me.
I've retreated from almost all of my friends and became this thing, a shell that just lays around trying to escape reality by reading (a book, sometimes two a day) and puffing the occasional hit on a pipe. Which helps with those delightful little cat naps on the couch. I am going to make an honest effort to reach back to those of you who I've had on ignore. I'll try to start answering the phone when you call. I really do love and appreciate how many folks have me close in their hearts, I just haven't been showing you. I've been having a difficult time reaching for your hands.
Good. That bit is out of the way.
The upper abdominal/back pain started Thursday afternoon. I always wait a day with stuff like this, foolishly hoping the burning, sharp, searing pain would just disappear : poof! out of existence! Come Friday morning, the pain (a solid 9 on the 1-10 pain scale) hadn't gone away (DUH!) and I knew, cause this has happened before, that my doctors would send me to the ER. Which they did.
My Ma brings me to St. Peter's about 11am. I wait for 3 hours in the waiting room, crying and moaning in pain before I am given a bed. In the hallway. In a very, very busy ER. It was nuts in there. Traffic accidents, demented seniors, drunk idiots. Once I was in bed, they started an IV and hydromorphone and Atavan were injected and I was really high and the pain was finally gone.
They order a CT scan. For 7pm that evening. 4 hours from now. Sigh. It's the only way they can peek inside and see what might be causing the pain. Finally, after more drugs, they wheel me down to radiation and perform the scan.
I am wheeled back to the ER hallway. At 10-1030pm the doctor comes over with the results.
They are not good.
'Your scan turned up nothing but the existing things you already have going on. But it did show some new lesions on your liver and what may be a spot on your lung. We're going to keep you, at least overnight so we can manage your pain."
I am sobbing at this point. The doctor says he's really sorry. I cry. I bawl. I hyper-ventilate. Inconsolable and still manage to run my mouth.
"It's spread. The cancer has spread. I want to go home. I don't want to stay here. I don't want to die and I'm dying. I'm dying. I want to go home. I'm afraid. I want this to stop. I don't want to live anymore. I hate my life. I can't do this anymore. I don't want to do this anymore. I want to die. I hate it. I hate it. I ha-ha-ha-hate it."
Yeah. Lost my shit big time. A very nice nurse gave me more drugs. I calmed down. Finally, about one in the morning, they wheeled me up to my room. I knew my next pain dose was around 230am so I stayed awake, knowing the pain meds would help me sleep. Which they did, at 3am. I fell into a wonderful, comfortable sleep until a nurse enters my room at 4am.
Wakes me up.
To do a blood draw.
I was angry. 'It's 4 in the morning, this is totally ridiculous, you just woke me up and I am refusing the blood draw. I'm sleeping. Please leave my room."
She did. I fall back asleep.
An hour later, another nurse enters the room, needing to switch out IV poles or whatever it was she was doing. Waking me up.
I didn't say anything nice to her either.
Did I mention, besides my exhaustively draining emotional meltdown in the ER, I had only had about 6 hours of sleep in the past 48 hours? I don't play well with others when I am tired and scared and distraught.
An hour later, some tool comes in with a tray and starts making lots of noise, waking me up. I say "What the hell are you doing?"
"It's your breakfast."
"Well, I am sleeping, you woke me up and I don't want breakfast. Get it out of here. Please leave my room. Get out."
It's now about 7am and I am enraged. I start to cry. A nurse comes in to ask what is wrong and I tell her I keep being awakened by stupid people and I want to be left alone to sleep.
I slam the door behind her. After making a Do Not Disturb sign I taped to the door.
I go back to bed. My parents come by about 1030am and I start to cry AGAIN! and unload what went on that morning. A good rant, with lots of swear words and mean, hateful comments finished off with my declaration : "I want to go home. I can't get any rest here. I'm exhausted and I'm scared and I'm angry and I don't want to do this anymore. They didn't find the cause of my pain, they didn't order additional tests and I can manage it at home because I have the pills."
I paged a nurse and told her she needed to take my IV out. She said it was needed to give me my pain meds. I said "No, it isn't. I can take them orally. I am leaving."
She took the IV out. I start gathering my things and walking down the hallway to the elevator. Walking by the nurse station, the nurse who took my IV out asks where I am going.
"I am going home. I'm done. Had it. Hate it here. Leaving."
"But I need you to sign this," waving a form. "Nope. I'm done. Just put down I left AMA." (Against Medical Advice)
I waited for the elevator and my Dad took me home. My Ma had left after my out-burst. Can't say I blame her, I can't help it, I swear like a sailor. It offends her.
I'm home now. With pain control, my Mac and a heating pad. It's been a tough couple days.
Glad to be leaving them behind in 2011.
Happy 2012 Everyone!

ps- I have an oncology appointment on Wednesday the 4th where I will get another opinion on yesterday's CT scan. Fingers crossed that the radiologist at St. Peter's made an error reading it.

So Many Tests...

Last Friday (why does shit always happen on Friday?) I started having terrible, sharp, burning pain in my upper left quadrant, right under my ribs, like a stitch in my side. It hurt to move, it hurt to breathe. I call up Dr. Judy (the office I used to work at) and they tell me to come right over. Sigh. Judy pokes and prods and sends me for an x-ray and ultrasound to rule out pneumonia, pleurisy, something to do with my spleen and just to get a look there. They showed everything was normal. A good thing is that my lungs are clear. The next place my cancer would show up would be in my lungs, then my brain.
I don't even like to write that, feels like bad karma. I will write that the tumors are shrinking and the cancer is being beaten into remission. That will balance it out.
I come home and am just laying down for a nap when the phone rings. It's Judy who says she has set up a VQ scan (some kind of nuclear medicine test) and she really thinks I should go ("If it was me, I'd go" she said) because she wants to rule out a pulmonary embolism. Well, shit. That's serious, but I am only 42!
It's off to St Peters Hospital Nuclear Medicine Department where I inhale a mixture of something radioactive and oxygen and get injected with radioactive dye and get rolled into a big imaging machine.
Luckily, the test ruled out a pulmonary embolism and I was sent home. Comforted somewhat that everything life threatening was ruled out but without a diagnosis for what was causing my pain.
I took pain pills to get me through the past few days and the pain has gone away. I think I pulled or strained a muscle there, though I haven't exerted myself in months. Maybe I just slept all twisted in a Ambien induced stupor.
Today I started Round 5 of chemo. Almost halfway there. Except for my lips feeling full of Novocaine and some tingling fingertips when they are exposed to the cold, I feel pretty good. There is protein in my urine (Avastin can wreck havoc on the kidneys) so I am doing a 24 hour urine test. That's when I collect all of my pee in 24 hours and put it in a big orange Hazmet comtainer that is kept in the fridge. Don't mistake it for lemonade, Dan!

WOW! Anarchy Does Another Great Thing!

Some friends of mine got together and organized a fund-raising calendar for me.  I am floored and moved and so immensely grateful for their hard work and long hours spent organizing and producing this.  I can't thank them enough.   There isn't a word to express the amount of gratitude I feel in my heart.  
Below is taken from the front page of Sailing Anarchy.  Order yours today!

"We’re proud to announce that as of today, the highly anticipated Women Of Sailing Anarchy 2012 Calendar is now on sale! More than six years in the making, this glossy 12-month calendar features 13 female SA’ers willing to bare it all in order to raise money for Catherine Connolly (a/k/a mainsheetgirl) in her fight with cancer.
We said they were willing to bare it all - but they didn’t: In fact, the photographers and models who volunteered their time and humility for this great cause created tasteful, fun, and sexy images from around the world, without taking their clothes (entirely) off.
Thanks to a great deal from Tepel Brother Printing, and Mer and Clean volunteering a bunch of time to design and ship these beautiful calendars, a huge chunk of the paltry $29.95 you spend on this calendar will go directly into Catherine’s battle fund, so order early, order a few of them, and enjoy what we hope will become another great Sailing Anarchy tradition (though we hope for a less hurtful cause next time). You can read Catherine’s story here, read the making of’ thread here.
Orders taken this week should be delivered to US addresses by Christmas. Overseas orders will require 3-4 weeks. Thank you!"