How are you doing?

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Can I just say that?  Are there words that properly describe that picture in an appropriate answer to “How are you doing?”

I know, I know…  It’s a common question and people mean well by asking it, but when you’re in a shell-shock space those kind of questions kinda get me sometimes.  I guess it depends on the mood I’m in that very second since my mood seems to change about every 8.3 minutes.  There’s just so much to process.

Thank you for all the phone calls, texts, video chats, visits and everything else you are all doing to help.  Seriously, it means the world to me (and MJ) right now.  I feel like where we were back at the beginning when I was first diagnosed.  Except with less options.  And maybe a little less hope.  Sounds depressing doesn’t it?  Only if I let.  And I’m not yet.

I have my second opinion tomorrow morning which is likely why I am up at 1:52am.  I have no idea what will be thrown at us.  Hopefully it will be some good news but to be honest I don’t think it will be.  She is a friend of my oncologist, is the same age and has the same experience he has.  I feel like the inexperience is what’s put me in this place.  I do have the name of a guy at UCSD that I really want to see and seems to have the expertise I need.  I will be bringing his info along and will request to see him if all doesn’t go well.  I’m also looking into all the recommendations that are pouring in from all of you.  Thank you all so much!  It’s great to feel like there could be so many options out there to try.

But back to that question.  How am I doing?
I’m doing OK.  I really am.  Of course the news was a punch in the gut and a lot to take in.  We have doctors to find and decisions to make and things are going to be nutty for awhile.  I’m not going to lie, I’m not looking forward to it.  I had just gotten myself to a place where I was back to a routine and looking forward to an uneventful time of enjoying my family while I got healthier.  Now things will be far from any routine and a roller coaster of emotions.  The only thing I can do at this point is buckle in and hope for the smoothest ride possible.  But all things considered?  I’m OK.
Ask me again tomorrow or in 8.3 minutes and well see 😀

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Lets get this out of the way (part 2)

Alright.  Did you read part one yet?  I guess you don’t have to, but if you haven’t and wanted to you have the opportunity to do that now.  I’ll even give you the kink here.
Part One.
Go ahead.  I’ll wait.

(yes, “kink” was a typo. I looked up and it made me snort so I left it in.)

And now the rest – The Health Update.  Part 2.

I had an amazing summer.  I went on a kayaking trip and to South Africa.  Just had a lot of fun and stayed out of the hospital.  Not only that but I was pretty healthy.  And I was starting to feel like it.

My only issue I’d been having is pain around the stoma.  It wasn’t bleeding anymore, but the pain started pretty much after the procedure and it put me back on pain meds.  After all the struggle to get off of them.  <sigh>
It was explained to me was that I have Portal Hypertension and that it causes pressure on the veins in that area. Not only that but Susie (my ostomy specialist) thought there might be some nerve damage from the procedure.  I didn’t really know or understand what all of this meant.  I didn’t look up Portal Hypertension because I’ve been doing the cancer thing for so long that it’s generally been better to not look stuff up. And of course this is pretty rare, blah blah blah.  Of course.  I have the best luck EVER.  pphhhhffft.

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At the end of September I started having some pretty severe pain one night.  More pain than usual.  I went into the ER thinking they would probably just give me shot and send me home.  They ended up admitting me to see if they could possibly find the source.  Yay!  I was really hoping they would find the source and fix it!  But they didn’t.  I did get a better system of pain management because they messed around with my doses.

I ended up having a small break from chemo from all of this. Then on my first appointment back my platelets were too low to do it.  Anytime any of the counts from the blood work are off, it could potentially halt chemo.  We rechecked my numbers the following week andthey were even lower.  No chemo again.

I did have enough chemo though to start losing my hair again.  I really wasn’t happy about it this time. I pulled out clumps and clumps just washing my hair.  My beautiful think curls were comin’ out!  One night there was a pile of hair the size of kitten in the bathroom garbage can. I still managed to have a bunch of hair on my head though.  That’s how thick my hair had come in!  I decided to rock the hawk again before losing it all.

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Before any of my whacky counts and missed chemos, I had requested a second oncology opinion as well as a second surgical opinion.  I have been talking to other stage IV colon cancer survivors who have survived well over 5 years.  Not only are they encouraging but they are a great source of information and support.  They all had pushed for me to do the referrals.

So by my request I was presented to the “tumor board” at SHARP.  They take a look at the case to see if there’s anything that is being overlooked, anything missing or if surgery is now an option if it wasn’t in the first place.  Apparently its a room of 20 some docs going over your entire case.  In my tumor board they noticed that my spleen is enlarged.  They also all agreed that I was still not a surgical candidate.  My liver is too scarred and the active tumors are on multiple lobes.

My platelets dropped once more to 56 and I was unable to have the Irinotecan again but he did give me the Avastin.  This was just last week.  Here’s what was explained to me:
I have Portal Hypertension (which we knew – click here for more info).  It’s caused from all the scaring and necrotic tissue in the liver.  It’s backing stuff up through that portal vein causing all kinds of pressure.  That’s why my spleen is enlarged. That’s why my stoma bled for all those months.  I can’t get treatment for my cancer because of it but it’s my cancer that’s causing it.  I’m kinda stuck.
My oncologist told us that if we can’t find a way to treat the cancer without causing bleeding from the PHT, I likely have months to live.

This is obviously devastating news that I was not prepared to hear.  Well, none of us were prepared to hear.  I have my second opinion appointment on Thursday at UCSD Moores Cancer Center.   I’m also going to talk to The Cancer Treatment Center of America tomorrow plus I have a few friends who are making some connections for me.  I am going to keep looking until we find that person that thinks they can help.  In the mean time I just need to keep myself as healthy as I possibly can!

I’m not throwing in the towel.  I’m relying on my amazing support system and all the prayers, good thoughts and vibes we can get!  I will be posting more about how I’m feeling and coping.  I will say it’s been  crazy few days.

I appreciate the support more than I can express in words.  Thank you all so much for everything you do to help us along in this journey.  There is so much love around and I believe it makes all the difference.

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Lets get this out of the way (part 1)

It’s been so long since I’ve been updating regularly, I have A LOT to catch up on.  I want to get to all the fun stuff I did this summer because I’m really excited to share and show the pictures.  But I also have some not-so-fun stuff to catch up on too.  So let’s get that out of the way, shall we?

Here it is, The Health Update.  Part 1.

Yes, this should be the one that’s the most happy and fun to catch up on, but sadly it’s not.
Let’s go back to the spring.  The last time I updated here was in the beginning of April.  I had just been in the hospital again for bleeding.  They didn’t know exactly how to fix it and I was sent home again.

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The bleeding never really stopped.  I had been in and out of the ER and hospital a number of times and they never really knew what to do with me.  Honestly I don’t think they believed how bad the bleeding was.  Stomas bleed normally and are very sensitive. On some level I always suspected they thought I was being a big baby.

And then one day in the beginning of May I had a huge bleed.  I ended up getting into the shower holding rags over the stoma to try to get it to stop.  The bathroom looked like a murder scene.  Blood was spurting everywhere.  Gruesome.
At one point I was sitting in the bathtub letting the shower run over me.  When I thought the bleeding had stopped I tried to stand up and everything started to go in slow motion.  Everything sounded like I was in a tunnel and I grabbed onto the rack on the shower door to keep myself from what could’ve been an embarrassing way to be found in the bottom of the tub.  Nalani and I were the only ones home and she was awesome.  She called MJ and they were able to get ahold of a friend of ours to take me back to the ER.  Of course by the time I get there the bleeding stops so they just want to send me home.  I put my foot down this time.  I told him I almost passed out and I wasn’t going back home until they had an answer for me.
I was admitted and this time they finally got to see what all the bleeding fuss was about.  I had a major bleed the first night I was there and they had to call the trauma team in.  I think at one point I actually did say, “Seeeeee.  THIS is what I’ve been trrrying to tell you!”  But now they really didn’t know what to do with me.

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After a few days they did a procedure where they cauterized some veins and did some banding and other things that I don’t quite understand.  It was a 5 hour procedure.  I was in the hospital for a total of 10 days that time.  And it was the last time I would be in the hospital!  Ok, well, at least for awhile.

Part two to come…

So much to catch up on, so little time…

I wish that title didn’t have so much truth to it.  But I will get to that…

First of all, I’m sorry.  I let the blog go.  I do that.  It’s like cleaning my room.  I start to let it slip with some socks on the floor and then a pair of jeans. No biggie.  After awhile there’s a coffee cup with weird stains in it that I have no idea where it came from or that there was even coffee in it.  Piles of clothes everywhere.  I’m feeling to overwhelmed to deal with trying to catch up on it so I let it go even more.  And instead of tackling it a little bit, picking up a shirt here and there, I feel like it ALL has to be done at once.  And before you know it I have a full on hoarder house room and I don’t go in it for months.

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So here I am in my hoarded blog.  All of these posts I need to catch up on and I don’t even know where to begin.

So I will start with this…  There will be a series of posts coming.  Some will be about my health and some will be about some of the cool places we saw and things we did and some will be about things that are going on in my head right now.  There’s a lot.

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Do not feel like you need to read each and every one.  If it feels like I’m posting too many things, I apologize.  Feel free to hide or delete me if you just rage at every post you see my face by.

I will warn you right now, not every post will be easy to read and things will get tougher as we go along in the journey.  It’s the nature of the beast.

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