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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3 thoughts on “Lets get this out of the way (part 2)

  1. Heather, I did my second opinion at md Anderson , which my doctor just told me is why I am stil here. Great hospital with a lot of options. I am in the targeted therapy program. They found a drug that matched my cancer. It is a drug they use for pancreatic cancer.

    • Thanks, Linda. I’ve heard quite a few good things about MD Anderson. I think I’m going to try and get my oncologist to get us a referral there.

  2. I don’t know if you know me – I think you went to HS with my sister, Mandy. I’ve been reading your blog and keeping you in my thoughts and prayers. You can do this. You are so brave.

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