State of the Heather Address

Hello my fellow warriors.

In the theme of this week I felt like it would be a good day to get you all up to speed on where I’m at medically in my journey.  I know there are a lot of questions out there and hopefully this will clear some of those up.  It my create more.  I’m not sure.  We’ll just have to see.

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Well, for starters, I’m still alive and I still have cancer.  Yep. I am still kickin, but that shit is still there.
Obviously the GREAT news is that I passed that whole “few months” prognosis back in October. And the good news is that my tumors have been stable.  Yes, that’s actually good news.  The cancer can either be responding to treatment, stable disease or not responding to treatment.  As long as I keep going with the first two, things are alright.  Of course I’d rather be responding, but I’ll take any good news I can get.

The not so good news is the complications that triggered the poor prognosis in Oct.  I’m going to try to explain it best I can.  I’m not even sure I understand all of it.

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So I think I’ve got you up to date on everything except why I’m still here. Right?  I don’t remember even mentioning here that back in November, UCSD ended up agreeing with SHARP on the crappy prognosis, so my hopes went straight down the tubes for awhile.  I was DE-PRESSED.  Had to really start putting my affairs in order.  My family staggered visits out to spend some time with me.

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It was great spending time with everyone and it really took my mind off of everything, believe it or not.  I did have to have some tough discussions with everyone, but we got through them and it was all still OK some how.  We never let that bleak outlook get in our way.  We went to Disneyland, Mexico, golfed 18 holes, ran the dog at the beach.  We just did it.  I did it.

The weeks went by and somehow my numbers popped back up enough for me to continue chemo.  Not at the full dose, but any treatment is good treatment, I think.  My numbers continue to be the same and we just keep going with it.  My oncologist seems to be a little stumped, but hey!  Good!  Cause I’m here and I feel great and I’m out doing doing stuff!  The dog, my love, has been getting me up and out.  I’ve had more exercise with her in the last month than I have in the last year.  She just has to look at me and I’m leashing her up to go.

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So at this very moment, here’s what I know about my medical conditions:
I still have portal hypertension.  It doesn’t go away.  In a nutshell, the portal vein is a big blood vessel that goes through the GI tract and spleen to your liver.  This blood carries the nutrients from food to the liver to process and filter toxins.  So it’s pretty important and when it gets backed up, really bad things can happen.  You can read more about it here
—->  Portal Hypertension
When I was first diagnosed, my cancer was quite advanced and I had a lot of tumors in my liver.  A lot.  So much so that he wasn’t sure I would make it through my first month of treatment.  But obviously, I did.  And I kicked ass.  I kicked so much ass that I was left with a bunch of scar tissue in my liver.  The scar tissue started backing everything up which caused the pressure and the whacky vein issues I was having and why I was spurting blood out of my stoma. All related to the portal hypertension.
Now, my spleen is enlarged because of it.  Apparently it’s like twice the size it’s supposed to be and that’s what likely is eating up my platelets and keeping my counts down.  If it were just the cancer I was trying to fight, I’d be the A number one ass kicker!  I might’ve even had a clear scan by now. But it’s this damn complication that has made everything 10 times more difficult.
Basically, it’s all the scary shit that could happen from all of this that I’m trying to not think about.  I TRY to eat healthy (still battling that one, but doing better).  I try to get up and out and I try to stick to a routine as much as I can.  I’m trying to just enjoy life and do as much as I can while I’m still feeling healthy and I’m able.

That’s where I’m at physically.
Mentally? I’m a bit all over the place.

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It’s hard to not think about it sometimes, but I just have to.  Otherwise I would be a basket case all the time. I still want to believe everything is going to be OK.  I wanna know that I have 3, 5 or 6 more years even, but I likely don’t.  I feel like I’m going month to month right now and I might feel that way for the rest of my life.  I hate it, but I don’t know how to not think about it.  Part of that has to do with watching two dear friends in the same boat I am pass on recently.
It’s all very hard and I don’t want to talk about it much.  I’ll talk about it, but I don’t really share my deep stuff.  The REALLY deep stuff, like, how I’m feeling about what my last days will be like.  Will it be fast?  What happens next?  I imagine I’m having the same very normal thoughts a dying person has, but it doesn’t make those questions, or the answers to them, any easier to know that.
I have a hard time getting to sleep.  It’s been going on for awhile.  Trying to make myself get to bed, but it doesn’t always happen.  Like tonight.
So yeah, I need to get my ass to bed.

I think I’ve pretty much covered the basics.  If you have any questions, ANY questions at all, feel free to ask.  I don’t mind.  I will likely always answer.  If for some reason I don’t want to answer, I’ll tell you, it’ll be all good and that’s OK.

I’m looking forward to more adventures.  Please, lets plan them.

If we work together; if we summon what is best in us, with our feet planted firmly in today but our eyes cast towards tomorrow – I know it’s within our reach.

Believe it.

God bless you, and God bless all the warriors!

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6 thoughts on “State of the Heather Address

  1. I’m so glad I found your site. I’m 66 and have lived through a few heart attacks and a triple bypass where my lungs were punctured. You make me feel like I can do anything. SO proud of your achievements, and so glad that I found your blog. Whether or not you know it — and whether or know you MEANT to be — you are truly an inspiration for those of us who have pity-parties for ourselves. Think of you often, and wish I could be more like you. Hugs to you from Sue in Vegas.

  2. Heather, I am a friend of your mom & dad…my name is Carol. I hope you know how amazing you are. It takes courage to put your thoughts down on paper/computer screen! Many us us struggle just keeping a journal period…we don’t want others to know our inner most struggles and fears, hopes and dreams. You my dear are facing life head on…living it! The best way you can…what we all should do. Don’t stop believen’ …journey’s words not mine but I think it makes all the difference. I have lost a dear sister in law to ovarian cancer …she remained a believer all the way..but still faced her news with courage and strength …at least most of the time. Now my other sister in law has cervical cancer and although her fight is quiet and less voiced she is a believer and just as strong…keep doing exactly what your want!! Be in the moment & write when you can…it gives us a path.
    I totally get why you’re Super Heather!!

  3. You are a super hero! Having gone thru the cancer thing twice now.I can relate to some of your anxiety! Keep the faith you are surrounded by much love and prayers:) I am still going to MDAnderson in Houston and am lucky enough to be in a targeted therapy study that is working. For how long, no one knows:) one day at a time and be thankful for every one:)
    Keep the faith!

  4. Heather – you are truly an inspiration to all! I know your Mom and Dad through St. Peter Lutheran and have followed your jounrney for a while – you are one amazing and inspirational Lady!! God Bless You!

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