Monday, May 16, 2016

Binky

So, yeah, it's been a bit.  Months.  Several months. Almost a year. First of all it had to do with moving, secondly had to do with work, finally with ignoring my feelings.  What feelings you might ask??  Exactly....

As my fingers lightly touching the keys, after months, don't have much to say/type.  This is my form of communication and yet I don't have much to say.  Oh!  I do have something, the reason I stopped writing for months, other than what I already mentioned above.

I was scared and completely over it.

From the moment that the asshole more commonly known as Melanoma entered my life, he has consumed me.  Or is Melanoma a 'she'?  I guess I'd rather know cancer as an "it" because that would be something unknown; I've already written something about this here.  The diagnosis takes on a whole new meaning...a whole new persona.  "It's" kind of like you have an annoying new roommate that you didn't invite in, yet this person is totally comfortable in your living room, using your silverware, eating your favorite ice cream that you bought for yourself, completely cozying up with your favorite blanket while staring you directly in the eye and not blinking.  

O-kay, those might be fighting actions.  I would kick a dude, possibly even a child, if they did all that back to back.  I take my blanket business serious.  I'm so not afraid to say that I legitimately have a binky.  And binky is in the dryer getting super fuzzy and warm right now.  I will get into the 'scared and over it' part later on, right now I just want to enjoy my hubs and my warm blanket.






Friday, November 13, 2015

Scan-erday...

Scan-erday...at Kaiser...I think it was the 24th of October...
Sorry, whenever I hear the day/word Saturday (or 'Scan-erday in this scenario), I have to finish it in my head with "in the park".  You know, the 'Chicago' song?  Anyways.

I envy people that get cancer and say that it was the best thing to ever happen to them.  I need to board that damn train...  Does it ever stop in crazy-town? 

So, I had my pelvic and abdominal scan a few weeks ago.  Turns out, I am "fine".  To which I respond.... please define "fine"?  My koo-koo bananas brain would like to think otherwise.  There is nothing wrong with me - well - nothing with my intestines, no tumor, nothing going on with the lymph nodes in my groin, no crazy inflammation that they could see in my small and large intestine.  The only thing mildly weird was that my bladder was 'deflated' and had 'diffuse wall thickening'.  The Gastro-nurse said that it was "normal, but if you wanted to pursue this with your primary care doctor then you can."  Why tell me that if it's "normal"?  Why leave the light on at the end of the tunnel for my curiosity to think - hmmm, what IS that down there?

Google tells me that 'diffuse wall thickening' is sort of inflammation not tied to one spot and could be caused by a few things.  It could be due to an inflammatory disease (why, hello my dear friend, Ulcerative Colitis), although when it involves the bladder it tends to be Crohn's if it's within the Inflammatory Bowel Disease family.  Another thing I read is that endometriosis could cause the bladder wall to 'thicken' or become inflamed. Endometritosis, while not life threatening in any sense, is super painful, annoying and can only be removed with a doctor surgically scrapping shit off from the outside of your insides...does that make sense?  My primary care mentioned this may be the culprit months ago, but I karate blocked that and my assumptions went straight Ulcerative Colitis Avenue, then took a sharp right turn to Melanoma Way.

But you know what?  I'm really tired of looking for answers of why I feel this way. Yes, I'd love an answer, but I am tired of being told it's nothing.  There is no consolation with 'nothing'.  So, I'm getting to the point where I am surrendering.  I'm holding the white flag at my side - not quite ready to hold up it without regard, but I'm holding that flag with a firm grip.  I am sick and tired of pondering over something that may or may not be there.  The nurse that I saw last, as I was crying to her telling her that I am worried that Melanoma had spread to my bowels, she looked me dead in the eye and said "And there would be nothing you could do to stop it".  Her words resonated.

Even though I am slowly inching towards the idea that my brain is causing physical symptoms, I'm not quite allowing "IBS" settle into my rented space because...well, I just don't fucking want to.




Thursday, October 22, 2015

Pain in a pain, you know what I'm sayin'? [part two]

{Part One Here}

I have a battery of blood work done and given new medication that is an "anti-spasmodic"...not for me in general, but for my intestine.  I think this is going to be super because it's a really, really bizarre sensation to feel your intestines - especially when it's spazzing out and contracting.  This new medication basically slows down the contractions, hence making the cramps less powerful.  However, what it does to your inside also generally does to your whole damn body.  SO fucking tired!  I am already exhausted all the time from whatever the hell is going on...tacking on a new med that a side effect is drowsiness is just lovely. 

Within 5 days of taking the new meds - I wake up at 3am to the worst pain that I have ever had.  Literally, every had.  It was so powerful that while lying on my back in bed, it shot my legs straight up.  Luckily, it only lasted about 2 seconds and then it's gone like the wind and leaves me behind with only worries.  I emailed my doctor that morning and told her the new meds aren't working as I hoped and I'm getting nervous, especially after review of some of my blood work.  I only had one that was out of range - lymphocytes were low out of range - there were a few dangling on the edge of "not normal".

A nurse wrote me back and interpreted what a Nurse Practitioner said (which, by the way, Kaiser freaking LOVES having Nurse Practitioners around - I think I've seen more N.P.'s than actual doctors).  Anywho, this NP basically tells me that it's assumed I have IBS...on top of my hibernating ulcerative colitis.  I stare at my computer screen, in shock, because not too long prior I bleed, had debilitating pain and they are trying to pass IBS on me?  I type a nasty gram and tell them that it's essentially bull shit because IBS is an excuse for a diagnosis - hit send on the message and cry. 

This last Friday, back at Kaiser for a follow up to see how I was doing.  This time with yet another Nurse Practitioner.  I was glad that it was a new one - I would be able to hopefully sell my case to a brand new jury. Within the first minute of us talking, I am in tears because I am SO frustrated with all this pain - I just want it to go away.  I tell her everything that has happened over the last 6 weeks and she makes me feel like I am being fucking paranoid. She looks me in the eye and asks if I have been put on anything for my moods yet.   She even muttered "PTSD".

She then goes on to tell me that she's worked in family planning and talked about my bad periods for a good 5-10 minutes.  Listen, I will take whatever I can in the bad period department, but I don't think my monthly's are going to cause me damn cancer.  I start getting agitated towards the end of the appointment because after telling her that I am worried the Melanoma went to my bowels, she's correcting me saying "everything is fine with your bowels, you had a colonoscopy".  Yes, you're right Ms. Fake Dr, but I'm talking about my small intestine and colonoscopies just don't (can't) go there.

I leave the office with paperwork for damn stress classes, a name of a book about fucking periods and a 'prescription' for magnesium oxide that I can get at Trader Joe's.  I cry the entire way back to work.  I started feeling like maybe I am being paranoid. Maybe I am causing this pain from stress.  That's a hard-jagged pill to swallow; to know that I'm having all of this physical pain that I am mentally causing myself.  The weekend sucked after having this slowly sink in like grease on concrete.

Guess what?  O-kay, you'll never guess, so I will tell you.  Tuesday I have an email from her saying that she showed my case to a (real) doctor and he thinks that I should have a CT to rule out metastasis.  Finally!  Someone gets it!!  I wrote her back and told her that Friday was really hard for me because I was feeling like I was crazy - I even mentioned the crying the whole way home part.  I hope she read it.  I hope she felt just a teeny bit bad.  I hope it changes the way she talks to people that are fucking crying in front of her. 

For a good thirty minutes I felt wonderful.  Vindicated.  Heard.  Then, naturally, panic sets in because someone finally agrees that there actually may be something wrong.

Scan is set for Saturday.  This is my first one with contrast (drinking that chalky-ass shit and being hooked up to an IV).   It's taking up nearly my whole damn Saturday.  Not really, but at least the fun middle part of the day.  I fast for four hours before (so no eating by 10:40), then I arrive two hours before the scan (get there by 12:40), start drinking liquid chalk and get dressed in my gown for the scan at 2:40.  I should be out of there and starving by 3:30...hopefully.

I'm sure it's to end up being nothing.  This is going to be a huge step for me just to make sure that everything is o-kay.  I can then move on with life.  My brain hasn't been right for months because of all of this crap.  If it is IBS...ugh...then I will let it soak in deeper and deal with it.

Wish me luck!