All the Unknowns

This is probably one of the most difficult posts I’ve written in this blog.

I’ll start with the good, fun stuff though…

In the beginning of the year, I decided that I wanted to take MJ and the kids to Disney World.  Traveling had started to become a little more difficult for me and I wanted to be sure we could do this trip without any issues. So I booked the trip and went all out.  Got a room at one of the Disney Resorts.  MJ and I made reservations at a couple of restaurants, and the kids and I picked all of our Fastpasses.  We got 6 days of tickets!  This is a really big deal for us because we usually travel very frugally. 

We got there and had an absolute blast. We all had so much fun with very little bickers. 

Back in March I had started to have some issues with belly swelling.  Nothing too terrible, but noticable. Having just a little trouble with the button on my pants.  No biggie.  I continued to swell up to the trip.  By the time we went on the trip I actually had to buy new pants.  I knew there was an issue, but it was something I wanted to take care of after the trip.  I probably shouldn’t of waited, but I can’t change that now.  And I have no regrets about going on that trip.

So back to Disney…  I was supposed to do a scuba dive in the huge aquarium they have there.  It was just me in the group which was super awesome.  I got suited up, got my BC and tank on and got into the water.  Because of the swelling I could not catch my breathe.  I tried and tried everything, but I just couldn’t do it.  It was heart breaking and I knew at that point things were bad.  I had let things get very bad.

On the second to last day to going home, we had split up that day for awhile and for my last ride of the night I got on the Rockin’ Roller coaster. Total blast.  I go to get off and the person next to me is standing over me waiting to get out.  I’ve been pretty slow getting in and out of the rides because the swelling had also moved into my legs.  My bag got caught as I was pulling it out and I was flustered by the girl standing over me that as I tried to pull myself up I fell out.  Fell pretty hard on my shoulder.  I was OK but pretty embarrassed.  Then the following day, I was still a bit sore but managed to walk around without issue all day, until the end of the day, that is.  I had to use the restroom and I was the only one so I left my stuff with those that were waiting and I headed up the walkway.  I heard this man yelling at his kid, “Hey!  Pay attention!  You’re not looking where you’re going!” and before I knew it, his feet were tangled in mine and down I went. HARD.  I fell right on my swollen belly.  I’m not entirely sure, but it felt like one of the worst falls I’ve ever had.  It took awhile but I was finally able to get up and finished out the night quite sore, but I managed.  No rides though.

  
As we packed to go home I decided that I should probably go get checked out right away.  I still had a lot of pain, of course, but who knows what else was happening.  Internal bleeding?  Brusing in the wrong places.  Plus this whole swelling thing.  So I went straight from the airport to the hospital.

Getting to the hospital confirmed what I had thought was going on…  ascites.  Ascites happens when you have worsening portal hypertention -which I do, and usually when your liver is starting to shut down.

  
It’s very uncomfortable and there’s not much they seem to be able to do.  I’m taking diuretics and at the very most they can try and drain some of it.

Now for the really bad news…     While I was still in the ER they did a CT scan. The ER doc came in and told me from the scan that I am full of metistatic disease and he put in an order for a consult with Hospice.

Right now I’m numb.  Everything is surreal.  

Once I was admitted to the hospital they actually sent someone from Hospice to my room.  I haven’t even had a chance to talk to MJ about anything so I told her I wasn’t ready.  That I’ll call someone when I get home.

I did take a peek at the brochure.  It’s full of lucky old people. 

   
 

I’d be smiling too if I didn’t have to consult with Hospice at 42.  I can honestly say for the first time in the 3+ years that I’ve had cancer, that I feel like this is totally unfiar.

Try to remember that it’s all in your head

Welcome to, Tales of a Hypochondriac with a Terminal Disease
by Heather Moana

IMG_0416

I have been a hypochondriac for as long as I can remember. THAT is why I was incredibly pissed that I actually missed my own cancer diagnosis until it was stage IV and now terminal. Seriously? Apparently I was a shitty hypochondriac.

Remember the movie “My Girl” where tomboy Vada Sultenfuss (played by Anna Chlumsky) made her friends take her to the doctor all the time. Well I wasn’t that cute of a tomboy and I didn’t make people take me to the doctor ALL the time, and my best friend wasn’t killed by bees, but we had A LOT in common I thought. I very much identified with her.

IMG_0413

My mom used to have these two huge medical diagnosis books. The WebMD of the times. I used to go through those books all the time. I had all the symptoms SO I MUST HAVE PROSTATE CANCER! Glad I didn’t go to the parents with that one. I did have another time when I was 12 and we were visiting my aunt and uncle in Riverside, CA so I didn’t have my books with me. I had taken a shower and I can’t remember what prompted the big cancer scare, but for some reason I was convinced I had it. I was shampooing my hair bawling my eyes out because I was going to die. Of course by the time I toweled off and blew my hair dry everything had passed. I actually kept my diagnosis suffering mostly to myself. On some level I did know I was being a little crazy and of course if I just wait it out, the symptoms almost always went away

IMG_0414

Now here we are and I have it. The big C. So you’d think I could just relax now, right? I mean, I have it, it’s terminal, there’s really nothing more I could get that should cause me any more anxiety, right?

Wrong.

So now I have symptoms ALL THE TIME. I mostly try to blow it off and wait for it to pass because most of them do, but some don’t. Some take me to the ER. So how do I not feel like I’m 3 sneezes away from Hospice all the time? ARGHHHH! It can drive one totally mad sometimes.
Every time I start to have a new pain, fever or pretty much anything out of the ordinary, I start to panic and wonder if this is the start of the end. Do you know what that does to me? And again, I keep that part of my hypocondriacness to myself.

IMG_0412

I’m writing this because tonight I’ve had a fever most of the night of 102. Not good for me. Technically I’m supposed to go to the ER when it’s that high for a period of time. So now I feel like the doctors themselves, while trying to be cautious, are exacerbating my hypochondriac ways.
I’m also writing this tonight to finally put it out there. To admit my tendency to not just overthink things, but mentally send myself to an early grave regularly. I do see the humor in it so it’s OK to have a laugh with me. Or perhaps you suffer from this too. Give me a shout and we can chat about it.

IMG_0418

Y90: Part III

Don’t worry.  You didn’t miss parts I and II here.
Yesterday I went in for the third part of my Y90 treatment.  Parts I and II were for one side of my liver and now III and IV will be the other side.  It involves a bunch of things like an “Angio-Seal” (Pictured below)

Angio-Seal VIP collagentwist_940

and radioactive beads that I don’t totally understand.

I went to the Interventional Radiology department at the hospital into a room that looks like this:

Siemens-Interventional-Radiology

When they first wheeled me in, one of the nurses came up to tell me what they were doing and to sign consent and then a male nurse came over to set up things. As the first nurse was talking I noticed she had a really cute stone carved sea turtle hanging on her neck. Once she finished I mentioned that I really liked it and showed her my turtle tattoo.  While we were admiring each others turtles, the male nurse piped in and said, “well alright, if were sharing turtles” and he lifted up his pant leg to show us the tribal turtle on the back of his calf.  And the best part is we all got our turtles in Hawaii!  Made me feel a little calmer about getting on the table for the “procedure”.

They have always referred to the Y90 as a “procedure”.  I’m not sure why but look at what happens…

interventional-radiology-bw

It seems like minor surgery to me.  I was awake but faded from the pain meds.  The first two times I went through this I didn’t have any issues.  No pain really.  I did get a fever and felt like I had the flu after the second one.  So I was confident there wouldn’t be any issues this time either.
Wrong.
Towards the end of it I started to have quite  bit of pain.  I was really uncomfortable.  It was that moment where I thought, “maybe doing this 3 weeks after major surgery wasn’t the best idea”.  Unfortunately we had to do it though because of insurance issues.
They had given me all the pain meds I could have so I was getting a little bit cranky.

After the “procedure” they sent me to a special CT scanner.  It had the normal open tunnel but it also had a flat monitor like thing over my chest.  I had to hold my breath a number of times like a regular CT and it was 5 minutes for each scan.  After the second scan the radiologist told me I had one more scan that was going to be about 30 minutes.  I was already in tears by this point.  I didn’t think I could handle it.  Too much.  Everything hurt.
She saw I was distressed and they let me go without doing it.  I’m not sure if I’ll have to go back in to do it, but I just knew there was no way.

That got me thinking about the whole meditation thing.  Could I have done it if I had “meditation skills”?  Could I have breathed through the pain?

Radiology-Yoga

If anyone has thoughts about this or does meditation and can give me more info I would really appreciate it.

So today I’ve been sick.  Really sick.

The recovery nurse yesterday told me to start Prilosec as soon I got home.  They told me that last time but nothing happened, so I didn’t take it.
Big mistake.  Huge.
I woke up at about 2 in the morning with the worst pain in my chest.  Terrible.  At first I was wondering if I was having a heart attack or did I get a blood clot?  I was freaking out until I remembered the Prilosec.  Ugh.  I didn’t get any so I had to just manage through it until the morning.  My pain meds didn’t even really help.

27919-one-day-you-will-be-tired-of-being-sick-and-tired-on-that-day

I am sick and tired of being sick and tired.  But as the quote above says, I don’t feel like moving.  I’m struggling.  there’s nothing I’ve found to distract me from all of it.  And it’s so frustrating.

I feel like part of my lack of spark is from the conversation with my oncologist.  When we talked about everything he was basically like, “Well, you’ve had a good run.  Sorry there’s nothing more we can do”.  Of course that’s not exactly what he said.  Not in those words, but in a way that felt like those words.  I know he’s been wrong a few times before so I don’t know why this one has gotten to my core.  I guess because the options have run out?  I dunno, but I really want myself back.
In the mean time, I’ll be trying to heal from everything.
<sigh>

Still blogging

images

“Hey, you don’t know me,
your doctor’s lazy.
You might have cancer,
We’ll call you, maybe”

OK, it was quite like that, but it was 3 years ago today that I got my call from the mystery doc to tell me I had cancer.  I’m still not quite sure why it wasn’t my doc that had called.  I think we had played phone tag.
Anyway, wow.  THREE years!
Sometimes it doesn’t seem that long ago at all and other times it seems like it was 10 years ago.  I would say that it mostly feels like it was yesterday.  Time has flown by and it freaks me out still.

I think with my most recent news I feel almost the same as I did 3 years ago.  Almost.  Obviously I’ve had time to come to terms with everything but there is still some uneasiness, fear and anxiety that I still have and I’m still learning to deal with.  Meditation is something that I’ve always wanted to get more into and still haven’t yet.  I have books and CDs but for whatever reason I avoid it.  I’m not sure why.  I think part of it is because I want to do it with someone else but it’s not exactly a team sport.

Screen-Shot-2013-03-21-at-13.43.22

The thing I remember most about that call was that the doctor I talked to made it seem like it wasn’t that bad.  That I’d “have a little chemo” and I “should be alright”.  Knowing what I know now I wonder what the hell he was thinking telling me that, but it was probably for the best that he did.  It did give me time to settle into everything and not get hit with all of the bad news at once.

I looked back at the last 2 “blogaversary” posts from the last 2 years and things are different.  I was way more optimistic than I am today.  I had options.  I had hope.  I’m still feeling sucker-punched from the news a little over a week ago and I’m not exactly feeling hope yet.  I’m not feeling like there “could” be some other options out there somewhere.  My posts were full of, I dunno, “life” and I’m not feeling that today.  What a bleak post this is compared to those.  What a bleak post this is in general.  Blah.

I’m really trying to find the happiness in the fact that it has been three years and I am still here.  Being depressed and not living my life because of the idea that my life will be cut short doesn’t make any sense!  Right?
I drive myself crazy sometimes.
I can tell you one thing I’m grateful and happy for…  all of you.  I’d have such a harder time if I didn’t have the greatest team behind me that I do.  Please know that I do not take that for granted at all.  Much love to you all.  Much.

Love

self-love

It’s been just over a week since the visit to my oncologist.  Seems like a month.
I’m pretty sure I’ve gone through every emotion there is and may have even discovered a few.  It’s been good and tough and everything in between.

The one thing that was just absolutely incredible that happened was the outpouring of love and support.  Outpouring isn’t even the best word I have to describe it.  People from every chapter of my life reached out to let me know they were thinking about me or to find out what they could do to help, to make me laugh or share in a cry.  After almost 3 years of this journey, people are still in the fight with me and I can’t tell you how much I appreciate everyone in my life.  Even those that I know are still fighting with me but have no words right now.

166053_20140306_145503_Friends_uplift

I’m not really good at expressing my gratitude or thanks.  I’m not good at showing people how much thy mean to me or how much I love them.  I feel like I don’t have the right words or the perfect gesture.  So I feel what happens is I let things go and then I feel horrible that all the people I care so much about have no idea how much they mean to me.  And then the hole feels like it gets deeper.
I honestly feel like I’ve either lost family and friends because of it or have at least damaged relationships.  And if you are one that feels that way I’m truly sorry.  I’m really trying to learn how to celebrate those that matter so much to me.

c9508dbfbc0f0d2ad22e6aed9e8e46bd

Please know that every message, text, phone call, post, gift and everything else people have done for me in the last week is cherished.  EVERY one.  I couldn’t get news like that and make it through the week feeling alone and that was probably the only emotion I didn’t feel.  So thank you.  So much.  It really makes a huge difference in this battle.

If I haven’t talked, texted or messaged you back yet, I’m sorry.  I haven’t been totally into talking or writing but I’m coming around.  I’ll get there.

love-life12

The one thing I can say for sure is that you all have helped me feel like I have some fight yet.  It’s hard to totally feel in the game while I’m still recovering from the surgery.  I still have quite a bit of pain and I tire easily, but my surgeon says I’m recovering just fine and he thinks I’m doing great despite feeling like someone stole my organs and dumped me in a cold bathtub in a warehouse.
Hopefully as more weeks pass I will feel more and more back in the game and truly feel like there’s still some time to be had.  That I’ll be able to get in more adventures.
I love life more than I know what to do with sometimes and I appreciate the reminders when I’ve been kicked down.

Thank you.  Much love to you all.

Not a Great Start

Happy 2015!
I guess before I get to that, I should mention that it’s been quite awhile since I’ve posted here. Mainly because I’ve been out living but also because I’ve had trouble with sharing for awhile. I’m not sure why but I just haven’t been in the mood to talk about what’s going on and happening. Last October I went to Utah for some canoeing and camping with a great youth cancer organization called True North Treks. A week after I retuned from that trip I went home and surprised my family for my Grandfather’s birthday party. Was back in Cali for about 2 weeks and then headed to Maui with another fantastic youth cancer organization called Athletes for Cancer. I learned how to surf, or I should say I learned I’m not a good surfer. But I did come home with an awesome tattoo.
But since those trips I’ve had a hard time. I had many life stressers and I wasn’t dealing very well.

Which brings us to the New Year!

2015/01/img_0404.png

At the very end of December things were starting to look up. My stressers were working out and I felt like things were going in the right direction.
And then…

On the evening of Decemeber 28 I was feeling horrible. I had abdomen pain that wasn’t going away. I went into the ER and to make sure I didn’t have any blood clots, they did a CT scan. The ER doc came back to inform me that nothing had really changed from my last scan except for my lung nodules getting a bit larger.
Um, what?
She didn’t know I didn’t know the cancer had spread to my lungs. It was an akward moment we had. And I was extremely sad to hear the cancer had spread.
The ER visit ended up with me having gallbladder surgery.

2015/01/img_0403.jpg

A normal gallbladder removal is done laparoscopically in about an hour. Because I had so much scar tissue and liver issues etc., my surgery was open and took about 4 hours. I was in the hospital for a week and it was quite painful. Spent New Years in my hospital bed. Didn’t feel like a great way to start the New Year. I’ve been home from the hospital for 5 days now and I’m still recovering. Still have quite a bit of pain. I’ve been getting impatient and doing things I’m not supposed to yet and I really end up paying for it.

Now that we’ve been out of the hospital and my oncologist is back from his Christmas vacation, we finally got to have an appointment with him to talk about the lung mets. I had already put myself into a mindset that it was not going to be good news and to prepare to hear it. Even when you already prepare for the worst news, it’s never easy to hear it.

The news we got from him was about as bad as I thought.
I have basically run out of options.
Devastating news to hear.

He told me there’s really nothing they can do for the lungs. There’s chemo that I can try but in his opinion, he doesn’t think it will make any difference. They will finish the Y90 treatment in my liver, but after that there’s nothing else they have to treat my liver. And even if there were, he doesn’t think my liver could really handle anything more.
Chemo is not meant to be a long term solution. Most people are on it for about 6 months and their treatment is done. The fact that I’ve had 2 1/2 years of it is kinda crazy and it’s a lot for the body to handle.
We pressed him a bit about prognosis. He was rather candid and said that most people with my degree of disease of stage IV colon cancer don’t usually last past 2 years. I’m about to go into my 3rd year. He doesn’t feel that my organs, mainly my liver, will last much longer. He expects failure within this year.

2015/01/img_0401-0.jpg

I don’t know what to feel right now. Part of me is crushed, part of me is numb and there’s a part of me that’s just angry. It’s a lot to process and I’m guessing it will take me a bit to come out of the fog. I don’t know what my next steps will be. To be very honest, I’ve lost my fighting spirit right now.

2015/01/img_0402.jpg

I’m trying to find the hope inside of me. I’m pretty sure it’s still there somewhere. Because I know I can’t go on without it. I know the doctors have all given me a terrible prognosis before, but I do think it’s getting serious now. And I’m scared.

I’ve got a bit of recovering from this surgery to do yet. (And I know I need to stop overdoing it!) So I have the time now to sit with all of this and process it the best I can. Get some snuggles and healing touch from my furry friends. I’ve got some time to spend with my family and time to talk, message or text with far away family and friends. And I need it. Please don’t be weird or afraid to talk to me. It’s OK to talk about. I want to know about your feelings too. It all matters so much.
The one thing that has not changed and will not change is my love for family and friends.

So here’s to the New Year and to hoping this bumpy start is just that. A very bumpy start.

You put yer weed in it

Some of you may not agree with this post or it may put me in a light you didn’t know about.  I know I’ve discussed this topic before but it’s been awhile and I know there are new readers out there.  I’m sorry if this shocks you so I will start out by saying, yes, marijuana is legal to use medicinally in the State of California, and yes, I do use it for medical purposes.  I have pain that I have to take prescription meds for that I would rather not and I also have issues sleeping that they have given me prescription meds for that I would also rather not take.  If a little marijuana can help I would much rather go that route.

OK, now that we have that out of the way, I can tell you why I’m even bringing it up.

Something funny happened on the way to the dispensary…

In order to get medical marijuana in the State of California, you need to have a doctor who is licensed to “prescribe” marijuana give you a stamped Recommendation letter.

Photo on 9-26-14 at 8.08 PM

They are only good for one year and then you have to have it renewed.  A great way to keep all of these doctors in business.  It’s not cheap.  Oh, and for an extra fee you can get a card as well.  I’m still not totally sure what good it does but she totally did the hard sell on me to get it.

Photo on 9-26-14 at 2.47 PM

My letter had expired.  My friend wanted to go to the dispensary in a couple of days and the doctor I had gone to before takes a week to get the letter to you, so my friend recommended a guy he had seen that gives you the letter in the same visit.  Sweet!  So a few days ago I went to see his guy and I just had to share the experience.

The office was in a kinda of industrial area.  The building was nice but a little bare.  The area around it seemed bare too.  No big deal.  Not judging the place based on that.  I brought all of my diagnosis papers figuring he would need to see them.  I had everything in a binder all ready.
I walk in and there was a receptionist who asked if I was there to see the doctor and when I said I was immediately threw a clipboard in my hands and told me to fill it out. Front and back.  Apparently they were getting ready to leave for lunch.

The sheet on one side had a bunch of questions asking about why I couldn’t sleep, what had I tried to fall asleep and if I had used marijuana in the past to help me sleep.  I do have trouble sleeping but I don’t remember telling her that.  Honestly I may have over the phone and that’s why she gave me that sheet, or that’s just the standard sheet they give to everyone and ALL of his patients just happen to have sleeping issues.
I finished filling it out and she told me to wait in the the waiting area until the doctor was ready to see me.

The waiting area was interesting.  There were articles all over the walls about milk.  Mostly about drinking raw milk, I think.  I think there were also a few about butter and there were 3 bumper stickers all relating to how 9/11 was “an inside job”.  I know how I felt sitting there, I will let you form your own opinions.

I was called back to see the doctor and he was pretty much what I expected to see.  And smell.  I found this picture of him online from 5 years ago.

090615sterner_r620x349

The ironic thing is that his practice is called “Anti-Aging Arts” but he looked at least 10 if not 15 years older when I saw him in person.  His beard halfway down his chest, his hair was long and all of it was grey.

He had all of his degrees on the wall.  He was a Graduate of Harvard & UCLA and a UCSD General Surgeon.  The guy is obviously brilliant, but I don’t know if he’s partaken of too much of what he prescribes or what.
I walked in, sat down, and he started talking to me about how I need to learn how to make this butter or a tincture.  As he was talking he put this dirty old cuff on my arm and took my blood pressure.  He continued to tell me how I need to smoke every day to make sure it builds up in my system because thats how it attacks cancer cells.  He went on and on and on about ghee and making sure I used “food grade” glycerine” and he would circle it on this paper.  For what?  What the hell are you talking about???

Photo on 9-26-14 at 2.50 PM

He went on for about 10 minutes then asked if I had any questions.
Um, yeah…   all of it?  What are you talking about?
But of course I said no and he told me to wait back in the waiting area for my papers.

When I got back to the waiting area the TV was on and there were people talking in a town hall discussion style about milk.  I was ready to go.

She called me up, gave me my papers and I was on my way.
All of that so I could go to the dispensary today.  Totally worth the story and the trip to the dispensary!

Photo on 9-26-14 at 7.28 PM

I just had to share because it was too funny not to.