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!"

The Good, The Bad And The Ugly

I've finished Round 4.  I never ever have to go through Round 4 of chemo again.  I am 1/3 of the way through my chemo.  My blood counts continue to stay elevated, which means my body is producing red blood cells and my immune system is pretty strong because my white blood cell count is good.  My iron levels shot way up,  anemic no more!  I am still very exhausted though. 
The bad news is that my weight is down to 95 pounds.  I've always been thin but this is a bit ridiculous. I'm eating (my favorite lately is a butter, honey and peanut butter sandwich) but don't seem to be gaining any weight.   I have started to develop Raynaud's Phenomenon in my hands because of the drug Oxaliplatin.  Basically my hands are very very very sensitive to the cold and become numb and hurt and my fingers freeze up for a few minutes.  I can't move them and they look like claws.   I wear gloves to get things out of the fridge and reaching into the freezer is a big no go.  As is eating or drinking anything that is not room temperature.  It is a temporary reaction,  only lasting for a few minutes at a time for the first 7 or 8 days of my chemo treatment.   But it hurts and renders my hands useless so it is a bit of a pain in the ass.  I am also taking Avastin which gives me lots of bloody noses, also not the greatest thing but I'll take a bloody nose over constant vomiting in terms of side effects.
I will be having a CT scan after Round 6 of chemo, which is slated for December 28th.  This scan will tell us if the tumors are shrinking.  I try not to think about what will happen if they aren't shrinking.  I just can't worry about it, what will happen is what will happen. 
In the meantime, I use lots of positive affirmations when I talk to myself : "My body is strong.  I am healthy"  "The medicine is making me heal" "My liver is healthy".... and I continue to get reminders from folks all over the world that I am in their thoughts and hearts and that helps me stay positive also. 

A Gift From Anarchy/Happy Thanksgiving

Most of you know I post on the website Sailing Anarchy and have met many fellow Anarchists in my travels,  dated one or two of them and formed lasting friendships with others.   Sailing is a small world and SA has created a community. some of whom  frequently get together in the 'real world'. Most users know each other because we sail together and share a love of the greatest sport in the world: sailboat racing.  Though it's a 'virtual' place,  the website has some big shoulders that I receive much support, emotionally and financially, from.  Someone is always awake on the Anarchy Forum, it has helped me through many a panic attack that hits at 4am, when no one in this hemisphere is awake.

I received a present in the mail today from another Anarchette, who lives in Australia, that has me overwhelmed with gratitude. A fitting emotion here on Thanksgiving Eve. It was an absolutely gorgeously beautiful quilt with sailboats and seashells and a backing the color of the ocean. The best part is the personalized label on the back. It's like a screen shot of how many users are reading a particular topic and it says:


"...mainsheetgirl - we know the label is in a funny place but we wanted to be as close to your heart as you are to ours...
(followed by the modified version of Footprints In The Sand)
A squillion User(s) are reading this topic thinking of you, fighting for you, sending their love, support & checking in daily for updates
All the members, lots of guests, the usual lurkers anonymous users

(followed by a list of the screen names of at least 100 Anarchists, some of of whom I have met and love and others whose paths I have yet to cross.)..."



I burst into tears of gratitude and am so very moved by this gift. I cherish it. It's a reminder of all that I have to be thankful for, despite the cancer: the wonderful family I have found  on SA.

Thank you. So much. So very much.

Happy Thanksgiving everyone. Count your blessings, be thankful for what you have and make it nice.

Good News

My blood counts went up, according to my oncologist visit Monday.  That's good.  I am still a bit anemic but the iron pills upset my stomach so I am trying to obtain my iron from spinach and kale and I reckon a good steak would help also. Although I decided a few weeks back to stop eating red meat.   The anemia probably contributes to my fatigue also.
I got approved for Medicaid which means my next round of chemo (Round #3 ~ 1/4 of the way done!!) can be done in the doctor office and not in hospital.  I still dread it but it is not the hospital.  I hate the fucking hospital.   Tomorrow morning at 9am, they will access my port for a 3 hour infusion of Avastin. Then I get to come home with a pack full of drugs hooked up to my port, a big IV,  to finish the 48 hour infusion of the other drugs.  I will be in my own house, with my own stuff and no stupid strangers waking me up at 8:30AM wanting to change my sheets.  That annoyed the crap out of me. 
I am feeling a bit discouraged, it's been very hard. I cry.  I am angry.  Depressed.  Just when I feel like I am recovering from the chemo, I get nailed with another round.  I wonder how I am going to manage 5 more months of this. 
Dan is really good at snapping me out of it, reminding me to just breathe and stay in the moment.  I will get through it because it is the way forward.  He helps me a lot.  Thanks, Dan.  I could not do this without you.  And your yummy juices also, they are made with love and lots of fresh veggies.   Love ya.

Round Two Finished

This morning started out like a Tucker Max story but without the alcohol, hilarity or sex.  While eating my bowl of Life cereal and almond milk, I felt my stoma become very, very active and suddenly there was a big blow out from behind the wafer.  The wafer is a circular piece of adhesive that attaches to my skin around the stoma that my ostomy bag snaps onto.  Shit was everywhere. Literally, down my leg, on my cooter, across my stomach.  Even down on my socks. My bowel  movements are involuntary now, I cannot control when or where they will happen.  Reality sucks sometimes.  Into the shower, in tears because I was humiliated, to get cleaned up.  Showers take a lot of energy, which I don't have this soon after chemo. 
The tears stop.  I bathe,  finish my breakfast and take a 5 hour nap.   I can look back at this morning with a mild sense of humor but not much.  
I was discharged at 2am Sunday November 6th from hospital.  I am a terrible patient: cranky, lashing out, swearing up a storm,  completely pissed off at having to be trapped in a bed in a room.  They wanted me gone as badly as I wanted to leave. It was a three day treatment and on day 3 a nurse finally kept me sedated from 2am Friday until 7pm Saturday.  That was the only way I got through the ordeal. 
Magical sleep. 
I've been home for almost two days and except for the fatigue/weakness, I am tolerating the chemo well.  I am thankful for that. 

Gee, But It's Great To Be Back Home...

When the medical literature says extreme fatigue/weakness is a side effect of chemo, they are not joking around.  I've been home from hospital since Saturday and am finally getting motivated to update my blog. 
I feel proud I have finished my first round of chemo and I am tolerating it well.  Except for the fatigue, there have been very few side effects.  Emotionally, I have moments where I am an absolute train wreck but physically, I feel pretty ok.  I am battling some mild edema, went back on Lasix/Klor-con (a water pill and potassium pill) which will help move the fluid up through my heart, kidneys and to my bladder.  It makes me pee.  A lot.  Which is good.  I also have to exercise (I try to walk 10 minutes 3x a day) and drink lots of fluid.  That seems odd when I am trying to rid my body of the excess fluid that was introduced via my port during the treatment.  Our bodies are funny things. 
The port is the best thing, though.  As gross as it is to have a one inch piece of unobtainium underneath the skin on my upper right chest with part of it inserted into a vein, all of my blood draws, pain med shots, IV fluids and chemo was administered through it. It really cuts down on getting stuck by those mean nurses. 
I am training myself to use lots of positive affirmations and visualizations. And to breathe,  just breathe. A solid mind/body/spirtual approach is critical to beating this stupid disease.  
I visualize my liver as being healthy and surrounding my liver and me is a big rainbow which is constructed of all of the people who love me and are sending positive healthy, healing vibes and love my way.  This love and light helps my liver stay healthy.  I am strong.  I am ok.  I will beat this. 

Just Catching Up And Waiting To Get Out Of Here

I knew I would do my first round of chemo in hospital but was caught unaware when severe back pain landed me in the ER in Tuesday, the 18th.   My abdomen had filled with fluid and it was pushing and mushing my internal organs up and sideways and everywhere manifesting itself in my upper back as a #9 on the "#1 is minimal to #10 is fucking ouch" Scale of Pain.   Why did my abdomen fill with fluid?  I'd have to ask again as they gave me a lot of drugs.  There was a CT scan then it was down to Radiology for a paracentesis, which I hope to never have done again.  That little pinch of a needle is never 'little' when it goes into your belly.
I started chemo on Wednesday October 19.  Ready?
Through my port, I got/am still getting a few small IV bags with anti-nausea and anti-inflammatory meds in them plus some calcium something and magnesium whoosie-whatsis then a big bag of Oxaliplatin followed by a 'push' of 5FU followed by a big bag of Leucovorin then 2 big bags of 5FU that each take 23 hours to drip and drain.   The last bit should be finished by 11:30 tonight. 
I want to go home.   
Unfortunately, my back has started to ache again, as if there is more fluid accumulating and the doctor will not be in until morning.  Weird at a hospital, I thought, no doctor here.  My ab may need to be drained again before I can go home.
Thank you always for your continued good and healing wishes being sent my way, Dan reminds me to call upon them when I get down and sobbing and in pain and they help me.  Thank you and keep them coming. 

Off To Hospital Again

Had a good office visit with my oncologist Friday.   My port incision is healed though the steri-strips are still on.  The site gets less painful and tender as days pass.  My liver is functioning well.   He does not think my cancer is 'aggressive' but without a few months worth of CT scans (which I do not have as part of my medical record)  it is impossible to know for sure.  The best thing to do is to begin chemo immediately.  I don't get a second chance with this. 
My Medicaid application is still pending, it could be 3 weeks or 4 weeks or longer or I may not be approved at all.  Nobody knows. Which led to the question of when and how I will begin chemo and how it will get paid for.
A round of chemo costs roughly $12,000.  Holy Baby Jeebus in a chicken basket!  That is a bit out of reach for an out of pocket expense.  The oncologist suggested that he admit me back to St. Peter's Hospital for my first round of chemo.   12K is also a bit steep for his office to absorb while I await approval from Medicaid.   The hospital has to treat me, especially if Dr. Dudek has me admitted. 
I told him "I really don't like the hospital." He replied 'That is a healthy attitude."
I've been thinking about it all day:  I can't delay treatment any longer, it is only a 2 or 3 day hospital stay, they won't be cutting me open like last time I was there.   I'm still anxious and afraid though. 
On Monday, I am calling the doctor to begin the admission process.  It is the way forward, just do the next thing.  That's all I have to focus on. 

11 October 2011

Today my surgeon gave me the 'all clear' to begin chemo.  I see my oncologist on Friday, who will make sure my port is functioning properly and we will set up a date for my first chemo treatment.  I am hoping to start next week,  the week of October 17th.

There will be 12 chemo treatments  over the course of six months.   If my blood counts are good and I tolerate the chemo, I will be getting an infusion every other week.  

On the way back from the surgeons office, Dan and I stopped at the Health Food store for some soy milk and protein powder.  With the provisioning finished, we satisfied our Burger King cheeseburger craving.  It was a productive day.