Saturday, June 24, 2017

How to break the news...

How do you tell those you want to tell something that you know they would want to know...but you don't want a fuss about it because a fuss will make you cry and you HATE to cry?

I have cancer. You can get the gory details reading the rest of the blog (and some rambling, so feel free to hit the highlights).

Most folks who see me now if you ask how I am will get "fine". Because really most say it as a greeting not a true heartfelt "how ARE you." I joked with the lab lady who said the same thing "hi, how are you?" "Well, let's see I'm at the Mayo Clinic. Do you really want to know? And how many really answer that honestly?" Ha. Poor gal. I did answer it jokingly but really - in a hospital one would think that wouldn't be the typical greeting...or, the really is Im just too raw right now to be socializing and talking to people in general.

Even my siblings didn't get phone calls with the news because I would have cried and I hate that. Shoot I made Butch tell mom the first time because I couldn't do it. Wouldn't do it is more like it.

This whole thing has me a crying emotional mess and that is SO not me. I'm the strong one. The one who can take a 34 week preemie overseas in a foreign hospital and not bat an eye tough gal (ok cried once on meeting Elizabeth).

Now? I'm a puddle of tears most mornings and I hate it and I haven't even started treatment. Good lord what will be like like then?? Who knows. I try to put my big girl panties on daily and figure it out. Yeah. I think a psychiatrist is in my near future 😜

Anyway. I'm avoiding telling the folks at work because if anyone hugs me it makes me want to cry. Again, do you see a trend? Yeah I DO NOT WANT TO CRY.

I'm leaking the info slowly and tried to hint at it with the "read the blog" posts in Facebook aimed at family and close friends.

Yeah. I found out very few actually read blogs anymore. Literally two of my coworkers - that's it. Cool with that. It lets me know the news really will travel slow and maybe, just maybe I will have repeated this enough times I can get through it without crying. I'm wearing mascara for crying out loud. It's not good for a gal to cry with mascara. I purposely avoided mascara the first three days of work after finding out because anything set me off then. Now? Just random bursts 🤓 I call that a win.

So if you wanna know, read on. If you don't, that's cool too. If you bring it up in person be prepared for jokes and for goodness sakes do NOT hug me at least until I'm fully ensconced in treatment (Or heck maybe not ever - who knows) hugs will crack the resolve then YOU are responsible to help me fix my makeup 😄

Friday, June 23, 2017

Toe woes

So the toe. What happened to my toe?
Well I went to Disney with Liz in May and walked

And walked

And walked

The pedometer said 10 miles.

I'm thinking Liz didn't turn it on until we got all the way INTO the park and had been waking a bit so we estimate adding another mile or so.

My toe started to hurt during the last few miles. :) I hobbled to dinner (OTHER side of the park) at the Moroccan place.

We did sit RIGHT on the water for the fireworks.

So it was worth the pain!!

I then hobbled out of the park and to the hotel. I soaked my feet in ice water. It didn't help.

I got a blood blister under my left toe. Either from just the amount of walking OR the longer toenail. Sigh

Lesson learned. Trim nails on toes before that much walking. Good shoes or not!!

So the toe.

It's ugly.

Look away if you do t want to see it!!

It WAS dark over the whole nail. Dark burgundy.

I had gotten into the pool Thursday night. When I got out I noticed the toenail looked different. It was ghostly through the middle. Hum. I pushed on the nail and herd a squelching watery sound. Yeah, time to get rid of that nail!!

So we trimmed. (Ok you were warned not to keep reading)

And this is what it looks like after Thursday.

Today I got BACK into the pool and the nail softened and separated more. So a bit more trimming and gently working on it and it's looking better!!

Just the outer edge on the right side. I'm sure it will sluff off the rest of the way soon. There is a super thin nail underneath forming already. So it isn't tender. I wore shoes today no issues. All is well in the toe world 🤓

Thursday, June 22, 2017

💩💩 day

OK, yesterday was a VERY bad day... not all together unknown there was a
possibility it could be, but REALLY fully ensconced in denial mode. My thoughts
HAD been to ask if I could go closer to home if it wasn't a "bad"
one... yeah, after he talked those thoughts flew RIGHT out the door.

So, I found out in the package I had to do not one, but two enemas prior my
appointment with Dr. L.  OK, I said never again... but yeah, appears the
butt is fair game from here on out - dang it! So... I do the first at 7am -
prior to the drive.... it all worked out OK... no issues there. Then I knew I
needed to do one a minimum of an hour prior - hum.. yeah, not fun. AND 
not convenient either as I'm on the road... so... I thought who has the best
potties with BIG handicap stalls? I thought and thought on it and finally
figured out we would have to eat before we went in as the appointment was at
2pm... so we may as well combine the two with the timing... so Zaxby's it is!
They have BIG handicap stalls with sinks in most cases.

As luck would have it, we drove to Mayo, then did an "around me"
and found one really close... got lunch, did my business and had a kids meal...
refilled my water and even had time for a 1/2 hour walk around Hobby Lobby. A
friend sent me a text just as we were walking around so I sent her a picture of
Liz and I in the store - ha! 

Yeah she straightened her horrible face before the shot. Thanks Liz! Hahaha

Mayo is very nice - why would I expect any different? Tree lined parking lots
- they also have a garage and valet parking if you choose and want to spend the
$$ on it. We parked in Lot A and walked in - took the long way around as I
discovered later. Oh, well. It was a hot muggy walk, but a good time to stretch
our legs. Then it was just a matter of checking in, getting my MRI scanned
into the system... and heading up to the appointment.

Dr. Landman seems very nice. He wasn't happy with anything the local doc shared
with him, he didn't receive the DVD with the CT scan, but still indicated he
would want to do his own as the folks at the hospital here were not looking for
anything and didn't SEE the large tumor growing in my rectum.

Apparently it's BIG... way bigger than I was anticipating it to be in the
scans, honestly.  

Here is the scan I sent to Butch, I thought it was the area in the yellow
circle... and the bottom  looking into it along the back wall of the
rectum... uhm, yeah, no, It's what's circled in the red. Yep, that whole thing.
I'll see if I can get a better cross section when I get back to the house as I
have a copy of this MRI at the house as well.

Anyway, it's NOT what I thought it
would be... so that was a little shocking. Then I got to do a fun little probe
- manual and with a "flexible" yadayada... I didn't catch its name. I
joked with Liz I should have told the doc at least buy me dinner first... but
I'm sure that wouldn't have gone over well. Sigh... so they did something I
thought was funny as all get out, they held up a sheet to block Liz's view
(**poor Liz was my documenter and my 2nd set of ears) of me dropping my drawers
down to my knees and kneeling at the foot of the lovely table they use... then
the sheet is abandoned and the butt is just hanging out in full moon mode while
the table that I'm now stretched out with my hands above my head, ass in the
air... and facing downward with the tilt of the table.... so, yeah, thanks for
holding that sheet up for the 2 seconds it took to drop my drawers then
proceeding to leave my backside out there for the duration.

Anyway, the procedure wasn't as bad
as the finger "probe" done prior. Yeah, there is no relaxing through
that.. I swear I wanted to ask if he could remove his elbow. Sigh... so there I
am butt in the air, naked from the waist down with a "drape" around
my clothing around my ankle (I this s
sounding like enough of a BAD
position?) "just in case". So, he finally gets his elbow out of my
butt... I mean really. He did comment that he felt it. Yeah, NOT proud of you
for that one bud. So, next is the tool... and the air pump. GOOD LORD!!!
Nothing like the screaming urgent need to defecate to wake you up to what is
going on back there... and the burbling... just shoot me now!!! BUT on the
silver lining part, it was MUCH less "invasive" than the finger (I'm
sure it wasn't just ONE... but no proof as photos and recordings are NOT
allowed (thank GOD at this point!)). So... you know me, I never shut up. I told
them that they need a camera down on the table so that I can see what they are
doing as well. There is a monitor on the wall above my head, but I swear I'm at
a 45 degree angle head down with my drawers around my ankle, hands above your
head - it's probably not that drastic of an angle, but it sure feels like that.
Then you add an air pump and burbles and the feelings... and it's quite
disconcerting to say the least. Yes, never have a colonoscopy while awake, I'm
now 100% positive of this one!! My belly is still rumbling with gas a day
later. UGH.

Again - POOR Liz!!! I told her to
avert her eyes from the moon :) She however, was good to have in the room
because SHE could see the screen on the wall. She got to see the beast that
this is and told me even to her untrained eye it looked like cancer and looked
bad. I didn't get a color description... but she drew me a picture... They took
three biopsies - and I even asked to look at those - they were tiny. Like the
head of a colored sewing pin small. Amazing what they can do with such a little
piece of tissue.

They will be looking at that tissue
for type, genetics and a number of other things. Speaking of genetics, my poor
kids are getting the crappy end of this literally - they get colonoscopies
starting at 35 and then every 5 years instead of 10. All first level relatives
get this... so siblings and kids. Sorry folks!!!! He said this one was growing
in there for like 5 to 10 years. Sigh.

OK, then he said more hateful things
to me - he said chemo radiation, ileostomy, more chemo, then reconstruction.
When he hit ileostomy I lost it... my vision went tunnel vision for a minute
and I teared up... that was it for me... this is NOT the kind of bag lady I
wanted to be, thank you very much. No, NO, NO!!!! ARGE.. all train of thought
left my poor pea brain... He told me the why - there are a lot of case studies
showing that it gives you the BEST chance of non-reoccurrence (yes, please).
Then he added insult to injury. He didn't say it mean or anything, but he
pointed out that my BMI is way too high... well, yeah, I know that... and they
want me to be down a LOT lower before surgery. So they asked to put me on a
medically induced diet. He explained the why... less chance of complications
during surgery, less complications in general, healthier, blah, blah,blah -
again, brain shut down. F*CK. Yeah, this is where the f*cks come out...  So, yeah, it's not a nice diet, it's a liquid
diet. And it's not for a few weeks its for 15 weeks or so... as in NO food..
just replacement shakes...for FIFTEEN WEEKS. ARGE. So... I start to wrap my
head around that....I accused them of not liking me. Then I asked about
alcohol. It was a resounding "NO" I do believe this is when the
"you guys don't f*ing like me" came out... yikes! I mean come on!! I
asked about coffee. The answer was yes, no cream, no sugar. Uh, that's NOT
coffee in my book. BUT we found the silver lining there... they have a vanilla
replacement shake that I can mix with my coffee like a latte. OK, I did tell
her she's not quite as high on the hated list anymore.

BUT on the chemo radiation... I'm
starting to lean that that is the right way from this article:

Basically gives me way better
chances of non-reoccurrence. So - looking like the right thing to do... all of
it's looking like the right thing to do...So... I guess this is the journey I'm
on - may as well toss my hands in the air and squeal a little. It's all
temporary, right? It's a year. A year to add 20 - 40 more? OK, I'm in.

And so we wait to plan and plot and
scheme. I've now heard the worst (or so help me, this sure sounds like the
worst). So today we feast!!! I will be eating WELL for the next few days. I
think this calls for steaks tonight for dinner, what do y'all think? It
actually may be Pizza from our favorite place in Atlanta if Angela will swing
by there and grab one for us on the way home!! If not, maybe Friday evening I
need to drive up and get one... and go to Ikea. THEN start the diet Saturday.
Don't worry I have permission to hold off until then.... 

So the lowdown in a simple format:

1. (** start Saturday) strict liquid
medically monitored diet

2. (** July 5/6 at Mayo) get
re-tested in EVERYHING to include:

   a. Colonoscopy

   b. MRI

   c. CT

   d. Blood work

3. (** July 5) Meet with oncologist
there to get oncologist here...

   a. I think I have found
mine here: possibly
Dr. Ahmad H. Al-Hajj - He actually came recommended by a physicians wife.

4. Meet oncologist here, set plan in place for treatments

5. start treatments of chemotherapy and radiation for 5 weeks

6. Rest 10 weeks

7. surgery - removal only

8. rest

9. more chemo

10. rest

11. one final surgery - to put humpty back together again

So only the first three have scheduled timelines for them.. but I'm trying my
best to adjust to the idea of being a bag lady in the most awkward sense of the
word... but this too shall pass *(yes, pun intended)


Tuesday, June 20, 2017

MRI - check!!

My sweet mommy came to the hospital to sit with me while I waited for my MRI. I THOUGHT I had an 8:30 appointment. Turns out I put the show time (1/2 hour early) whoops. I was here super early!

So 9:15 ish the finally called me back. 10:40 and I'm OUT waiting for my disk. I had about 45 minutes of non-contrast and 15 minutes of almost solid scan with contrast.

So first impression. Yeah. Yuck! I tried to go in with my arms up. Yeah. NO WAY!!! Creepy feeling. I opted for arms down once I found out I was basically going in up to my neck. I could see out. They REALLY need to put something in the ceilings or something somewhere. Talk about BORING as crap!!

I closed my eyes a lot and tried to concentrate on relaxing my lower back as it was clenching and would NOT let go!! I am stiff and sore and hurting. Ouch. I will sit Indian style tonight to stretch it all out.

AND I feel a distinct difference in heat when it's running vs not running. It's kind of creepy. I wonder just what that is doing to your poor body. I asked him and he said yes, others have said the same thing. He thinks it's body heat. I think it's really my body feeling the assault from the X-ray. Or I have a very vivid imagination 😜

Both are possible!!

So that's done. Waiting on a disk now. Then I'll go home and copy it so I have one for my records and a copy for Mayo. That word is getting easier to say by the way! Not sore if that's good or bad or the natural progression of desensitizing myself.

Monday, June 19, 2017

Sunday Funday...and Monday

Sunday we sent Butch off in his work trip to Chicago early in the morning. W celebrated Fathers Day with Butch Saturday night with Korean food brought home (yum!). Sunday was dinner with Dad, mom and the girls at Tapatio and a few gams of RummiKub after. I need to remember to take pictures when we go out! Dang it! Oh well, we had a nice dinner out!

Monday - today I had training all day at work. I got a call before lunch that I ditched out to answer from Mayo. It was for registration. Ok. Done and done! I asked the gal about the request fir the MRI to be done there and I was encouraged to get it done here as we have the order here...uhm, ok. I also overnighted all my hospital records to Mayo at lunch. I'll also pick up a copy of them fir myself to hand carry as well.

I also went to my primary care provider. He had zero results from the hospital OR the colonoscopy. Yep, none. He said they would catch up. So, he's aware and we went over the blood work he had done and nothing was out of sorts wit the known exceptions of cholesterol. Yeah, that's a known. So, nothing would have screamed to him that I needed to rush the colonoscopy. Or indicated cancer for that matter. Can I please be in denial now? Yeah, one can hope without a biopsy Dr H could be very, very wrong. One never knows, right?

In the meantime as I'm in the Drs and running here and there I missed a call from the hospital to schedule my MRI. The GREAT thing about dealing with the hospital is they were open until 7pm, so I called them and have an MRI scheduled for tomorrow at 8:30 in the Perry Hospital. I've heard good things about them even though they are small. Let's face it an MRI is an MRI and if is not good enough Mayo will do another. Yay! So I can carry a copy of that with me to Mayo :). Not ideal in they can't read it prior, but they'll have it. Could be worse!

I also missed a call from Ms L. She's also going through the wringer right now and has to wait a week and a half for a breast biopsy to see if that is where her bone cancer is originated from, then starting treatment for that. All without insurance. I can't even fathom that! I'm sooooo blessed with having two insurances in Blue Cross from my work and Tricare from Butch. Best of both worlds in that I pick my own doctors, but have the added coverage of a Tricare. So very lucky to have those. Right now my only thoughts are that I don't have enough leave to cover all of this. Small price to pay in the long run, I'm sure. Some lost pay for a bit, however blessed in that as well as I will be able to work from home on and off as needed to get through.

Sunday, June 18, 2017

Fridays update

Yeah, yeah, yeah, I'm late on that update aren't I? 

Not much to tell, I called the insurance and asked them about pre-approval for MRI.  Guess what?  They are NOT needed - nope, not at all, not needed.  I can just GO.  So has the local MRI place called me to schedule anything?  I waited all Thursday and all Friday just to see if they would call.  NOPE. 

SOOOO I sent in a message to the Mayo to see if I could just get this done there as it would be "real time" as it were - they can do the scans and be done.  I have also sent a message to the group that will be seeing me on Wednesday - I didn't have the epiphany to do that Friday early enough, so they were all out of the office and I got an auto reply that the team will be back at it at 12am Monday.  I'm sure that's not the case, but hey, I put it out there... either way apparently there is no sense of urgency by anyone here to get me in and get me scanned.  If Mayo says get it done locally I will start that search then - I have heard good things about the MRI center in Macon, so we'll see how quickly I can get into one of those.

So, PLUS - calling the insurance was easy to do, they were helpful and nice and sweet.  Bonus!  MINUS - this local stuff is for the birds.

Other than that I have to say that the whole experience of a colposcopy was really not a big deal (sans the shitty news I got).  I don't know if the lack of pooping for DAYS afterwards is just my snail slow system or what... but we're SLOWLY getting back to normal in that department.... as normal as I apparently ever was :)

On those thoughts too - I have been reading - probably WAY too much on what to expect after this surgery... Yeah, yeah, I know... DONT do that.  But I did the same thing on my ear cancer surgery.. remind me to share some thoughts on THAT and breast exams too... BUT I keep seeing what I may possibly NOT be able to do anymore and well, I hit overload this morning... most days are good, today, not so much.  I was sitting on the porch with my coffee and seeing more and more of what others are talking about with sensitive bowels, this and that they can no longer have... and it got to me.  Normally I can have a few hours on the back porch first thing and NO ONE is up.  Today Butch was up... so I had a witness to me losing it.  Sigh.  I hate having witnesses.... well, in person, virtually, I don't care.  Really - folks need to be able to research and find someone/anyone who can relate, who will tell them straight up, "yeah, I now sh*t like a racehorse on diuretics if I eat xyz"  THAT part is what I'm looking for and there is like ONE other woman who has a blog about anything similar and her case is different in the where/why of her surgery, but I do get a kick out of reading her blog! Colon Cancer Chick, Rectalcancermyass, and My colon Cancer; semicolon are a few I'm reading just to "prepare" myself mentally for what could happen.

Why torture myself?  Well, again, it's like the ear thing... I knew I was getting it done, it WAS going to happen.  I didn't know what I was going to face, but damn it, I could get an idea of what SOME of the possibilities could be... then maybe I could get my head wrapped around the possible... and also be quite pleased with what they DID do and the results.  I choose to believe that is what I'm doing right now...not that it doesn't scare the PEE outta me... but I guess this is MY processing way.
So, that leads me to family, kids and dealing with everything.  I know I am mentally preparing for this, but I feat that by acting like it's not a big deal I may have done a disservice to the kids.  I'm just hoping I haven't broken them.  Poor Liz is dealing with her dreams being bent here recently with her not getting to follow through on her dream plans of going to Africa with Peace Corpse and she's having a rough time dealing with that HUGE life change and whammo, oh, by the way your mom has butt cancer... surprise.  Sort of a shitty deal (I REALLY need a new word for how crappy...
9yeah, I'm doomed) horrible, awful this is)   Both to have it and to have to present it to them... but it is what it is... that was what I needed to do Friday was find some counseling for BOTH kids to help them handle this...

So breast exams, ear cancer, you name it... I got the call from the Dr's (Gyn) office Friday that my breast exams were back and they think they are benign - just see us back in 6 months.  I had just gotten my 6 months poke/prod on the 9th or there about (that Friday).  For those that don't know, this is what I have been dealing with for, oh, five years or more (probably more).  One breast will be in rebellion, then the other will join in on the fray... this time it's George (they are Left: Bill, Right: George)  I have no idea why those names, but these are names from college.  Leslie may have to shed light on just WHY they are named.  I'm sure she'll never be able to tell you where the names themselves come from :) but one never knows.  Well, Bill had been the problem child for YEARS, he's on the sorta clean bill of health, but George has joined in on the fray this past 3 exams.  Fun, fun, fun.  So they tell me this and I'm still in sort of shock ... and thinking in the back of my head - is THIS who you tell, "Oh, by the way, you may want to note in my records I have Rectal Cancer, and you MAY want to look at that a LITTLE closer" .. but my brain and my mouth were NOT on speaking terms when that call happened and I basically said, "Ok, thanks" and hung up... all the while still having my brain in overdrive screaming you MAY want to tell the rest of the story....  yeah, never did....

My thought processes on that are this, I'm SOOO glad I went to the Pavilion for my exam this time as they are now part of the hospital system and are on the DVD I will be sending to Mayo.  THEY will see these and know there are visits and they will probably follow up on that one.. need to make a list of things to bring up to them.

Which brings me to ANOTHER thought... Liz is going as my 2nd to Mayo... is that really fair to her?  Should I get someone else to go?  Let the family be family and not care takers?  Is this good practice for her as she wants to be a Dr?  Well, not really as she wants to be a medical examiner, and thanks, but nope, nope, nope.  I'm not going there for a LONG time... maybe missing a few pieces when I get there, but not going there just yet, thank you very much!  I'll ask her again later today if she really does want to go as my 2nd or if she wants to pass that to a stranger who may be able to deal with that part a little better than family... I tried to pry into her head on her plans, thoughts and all that for the future as she's gotten in the job hunt behind the power curve with the Peace Corpse not telling here she wasn't going until 30 days out... so very wrong of them to string her along that long without more warning...  Sigh.

Anyway...that's where we are as of today... and I moved my laptop to the table outside - it's AWESOME OK a bit glaring, but really, blogging while sitting in your swim suit and the breeze - can't beat this!!  Nope, no pictures as I'm on the laptop.  Then I get on a bunny trail trying to find my webcam on this thing...had to download something to install it.  So... called Dad to wish him a happy Fathers Day while waiting for that to download... squirrel!  ha!

Angela came out to visit just as I got the webcam loaded :) 

She's going to go mow the lawn (and NOT in that hoodie!)  She only lasted a few minutes before she bailed to go get some shorts on to come back out in the heat...

and with that I'm getting off the computer and restarting it - then getting back in the water as my suit is almost dry and it's getting more than a little steamy out here :)