All we have to decide is what to do with the time that is given to us

Thoughts, feelings....

This is from an unfinished blog entry I wrote BEFORE the PET scan. Sorry if it is morbid and depressing- this is just what I was thinking at the time. I was debating publishing this at all, but then I just decided to go for it.

READ WITH CAUTION:
----------------------------------------------------------------------------------------------------------------
Dated: a few weeks ago, 4am:


What do you do when you know you are going to die? What do you think about? Where do you start?


I know I am going to die from this. I know it. It fucking sucks because I have just found myself. At 29 years things have just started to come together: school is finished. I love my house, my friends. My best friend is finally on the West Coast. And I discovered festivals. Happy lands. Places where I am truly happy, something which I have been searching for since I was 16. Nature is all around me. I belong here on the West Coast. I am happy.


Now I am at a turning point. Expectations for myself. Expectations of other people. Happiness for myself. Happiness of other people. Who do I please? I am a caring person, I need to make my closest friends and family happy. I take care of them and they take care of me. But I have so much I need to do in this time.


I saw the ocean last month and it changed my life. Granted my mind was a little altered and running high after a festival... I need to be at the ocean. I need to explore the sealife, surf, swim, feel the rhythm of the waves, feel the hot sun on my body as I lay in the sand. THIS IS WHAT I AM MEANT TO DO. And then travel. I was meant to travel. I am an explorer, a toucher, experiencer, feeler. I need external stimuli. I do love that I know this about myself. I need to explore.


So what do I do with this knowledge is my dilemma. Decisions. Decisions that cannot wait any longer.
Do I just say fuck this nurse practitioner thing? I am doing something good for society and giving back, making a difference. But was just going through the hell of school enough experience I needed in that area? Am I done with that part of my life?


After talking to a friend about their work in childcare, I realize that I miss coaching SO much. I can't believe I ever stopped. I hate SU and all the sacrifices I have made in the past 4 years. At the same time, it is school that made me stronger, strong enough to be able to deal with cancer treatment. School GOT ME TO SEATTLE. I never will regret that.


I am meant to work with kids. I am great at it. I get them. I treat them like adults which is something that their parents or other people dont. I respect them. They make me happy. Their innocence reminds me that everything can be ok. I need to be around that now.


Can't you see how confusing this is? Decisions! I'm rambling and my mind is running in circles. Planned Parenthood gave me the happiness that coaching did. Right now that may be the sole reason why I could remain a NP. But I have to take that test! That damn thing is sitting in the back of my mind, but almost forgotten because of my financial trouble, complications with a breakup, and all of this cancer stuff. I seriously think that I am waiting for the results of the PET to make this decision. Because it may not be worth it. I may be dying NOW.


Normal people don't think about dying. I know some depressed people do, not that's normal. And I used to. For so many years in my worst depressions I have thought about ending my life. Now I am fighting to live. How ironic.


Soooooo.... what do I want to do?
Choices: (clearly must be a bulleted list)

• Pack up and leave for an amazing overseas adventure. I can meet up with my friend in Thailand and India and then travel the rest of my life avoiding my debt. Very Very VERY appealing
• Move to the ocean. Hawaii? Cali? Again with the travel and overseas?
• Fuck the medical field and nursing and start coaching again living in debt
• Go off the grid and be a traveling bum with a performing arts troupe. Or better yet, a bunch of burners. Just live the life, even if hard, but packing up and seeing where life takes you. Like the movie "In The Wild." Burn my IDs and credit cards and give up my possessions to live out of a backpack. Inspiring..

All of this to be a free-spirit, no ties. But if I'm dying then I should be around the people I love. How do I spend this time? People I love or places to see? Is that selfish? Why can't I have both? The problem is that it is absolutely impossible or unreasonable to even think that anyone else is on the same page with me on this. Nobody fucking gets it. Everybody has plans for me. They speak with reason. Amber, you need money. Amber, you need a career, support, job, housing, food... blah blah blah. I have seen the possibilities of world without money. With only sharing and love and taking care of each other. If only I could take the people I love with me. For this time I have left in the world, these people should just go with me. Give up all responsibilities. It's selfish I know, but I need them. I need them and I need the world.


I need my sister. I miss her more than anyone else right now. I really have no one to talk to about all of this. No objective people who will just listen to me and let me have my "unreasonable" dreams. No involvement with my ex. No lecturing me about finances. No urging me to restart treatment as opposed to living the rest of my life in happiness. My sister can be my favorite person in the world yet we never talk. I love her so much and I never get to see her. She is so far away. But I can never move home.


Crazy talk. Still no resolution. So much going on. I need a personal assistant so bad. I need so much help and I'm not sure how to get it. I can't do this right now on my own. I'm a fucking mess.


Would having money change everything? I hate money and capitalism, and so don't want to run my life. But yet again it does. Money is the root of all evil. I have made so many poor decisions out of desperation for money. Why did I leave coaching? Partly because of money. If I had money right now would things be that much greater? At this point maybe yes. I could hire a personal assistant. I could have the best fucking cancer treatment ever that may actually save my life. I could live all of my dreams of travel, being near the ocean- even flying my parents out and supporting them while I'm dying of cancer. Ahhhhhhh why does money have to matter so much? @#$#^$%&%^&%^&%$!!!!!!!!!!


I just need to stop considering and DO. Stop talking the talk and walk the walk or whatever. I guess I need a sign. Or maybe I just need to pay attention and act on all the signs that have been out there all along.


To be continued....

Here we go again

It's back.

The Facts:

I got a CT scan and it showed a 3.5x3.5 mass above, behind, and to the right of my bladder. I knew it too. A couple of weeks ago I started having some bladder problems- I noticed that I was going to the bathroom a lot, and when I had to pee it was NOW. Also I was having problems completely emptying my bladder. I was hoping it was a urinary tract infection but I had no pain and it seemed to last for weeks. Actually now that I'm writing this I remember that back in August at the end of clinicals, I had really wanted to steal a urine strip for a urinalysis. I should have because then I could have ruled that out. Oh well, lots of "should-haves". What's also frustrating is that at my last appointment my doc felt a mass but because I reminded her that I had a fibroid, she assumed it was that. She actually thinks that it may have been there all along, and she had originally thought the mass was connected to my uterus- now she felt that it was separate.

What's weird is that my CA-125 drawn last week (tumor marker) was even lower than before, at 9. So now we know that it is not an effective marker for my kind of cancer- this is bad news because it is much easier and safer to draw blood rather than subject my self to radiation all the time. Now there is no real good way to monitor the progression and whether treatments are working.

So now what?

1.) Surgery. She wants to schedule it as soon as possible but this month she is fully booked. So she talked to her scheduler to fit me in sometime in the next few weeks. The first available was November 1, which I considered for awhile and then changed my plans. It may sound crazy to you, but Halloween is my favorite holiday and I have so many parties and events planned already for the weekend. Plus, my best friend is flying in from SF for all the fun. Do I really want to spend the day of Halloween doing a bowel treatment and drinking only clear liquids? Hell no. Even if I spent that day at home, I wouldn't want to go under the knife after a weekend of binge drinking. This may be a life of death situation, but I'm choosing to live my life. This thing has been there for months already- how much is it going to matter to delay it a week or so? Now my new date is November 10.

2.) Further lab tests. For some reason I haven't gotten a CBC or metabolic panel recently. I wonder how my platelets are because last time they were really high which puts me at risk for clotting. Also, I've been pretty dizzy when standing lately- more than usual. I wonder if I'm anemic?

3.) More scans. With my exceptional ability to work the system and the thanks of my very understanding doctor, I got her to authorize a PET scan through the SCCA's charity care program. My Basic Health insurance refuses to pay for them, as well as the charity care which has helped with so many other bills. This is the test she wanted to run initially. The scan is ideal for finding other areas of cancer in the body, superior to MRIs or CT scans. By doing this scan, I would know the extent of the cancer and whether to do the surgery to remove the bladder tumor, or to just go ahead with other treatments, i.e. chemo. Basically, she was saying what is the point of taking out one tumor when my body is full of them :( She did reassure me though that ovarian cancer rarely spreads beyond the abdomen and the CT did not show any other tumors.

This is the plan for now, because everything else depends on the results of the PET scan which is scheduled the 23rd of October. Now it's just planning again for yet another year of my life battling this thing