Tuesday, June 27, 2017

Hangry Woman

Day four of the forced diet. I have learned one thing...Mexican food is my greatest temptation. Hands down. I wanted to lick the salsa off the chips!! I didn't but I sure as heck wanted to!! I went with the girls from work. I was good, just chatted with them and drank my shake and a Diet Coke (or two!)

I have also picked my oncologist here in town. I talked to the scheduler at the cancer center near the high school here. I told her who had been recommended as doctors (Burns, Sumrall, an Al-Hajj). I told her I feel like I was throwing a dart and not sure if it would matter much who I chose. She asked me what I wanted in a doctor. I DON'T KNOW!! THATS then the tears started...damnit!! I fought through the tears and crackly voice and said I want was a doctor who will give me all the gory details, all the pictures everything. So, the choice she recommends is Sumrall. Ok, I'm good with that. Decision made unless the folks at Mayo say NO.

And I still tear up going over it again...this is so not me. I'm a planner, take charge, make the changes, get it done gal. This? This unknown rattles me to the core. So, I should be better now, right? Hahahaha! Eh, maybe. In time. Maybe never.

This whole thing gets me. Work really pisses me off. It takes THIRTY DAYS to get approved to telework from home. Really? Thirty days? Are you freaking kidding me?? AND I have to have a letter from my doctor with plans, times, etc.

Ok. I can do something about that, Right? Go back to the local idiot, get him to write the letter. Yeah, that didn't work. I had to PAY $20 to turn in the paperwork for them to write the letter. Again, are you freaking kidding me? Ok, whatever. If this will get the letter faster, then that's the faster the process will go because I'm sure my timeline outside of treatment is shrinking. If things go as fast as it dies for some, I could start the week of the 10th...so 15 days away?

Yeah, not a lot of leeway for a chick with only three weeks worth of leave (give or take a few days in there). Yeah, no comments on that from the peanut gallery! I have had a few crowns, kids doctor appointments that, as she's not 18, I still have to attend. Plus, I take care of mom as needed for appointments that require a driver - and honestly I do NOT begrudge those days. It's the reality of what needed to done with minimal mental health days. Only one in the last 6 months or so...that's reasonable, right?

Anyway, it's frustrating to have to deal with paperwork when it's the last thing I need to deal with, ya know? No one should have to fight for the right to work from home while doing chemo. Especially if you will immunocompromised during these types of treatments. It's shameful. And disheartening. And frustrating.

Speaking of planning, I had to sit down with a spreadsheet to figure out when I can do what for the 5th and the 6th as far as food/drink, actions, things to do to prep for FOUR appointments. Now two of these are labs at noon on the 5th. So that's one stop :)

12:00 AM No food fasting lab
1:00 AM No food fasting lab
2:00 AM No food fasting lab
3:00 AM No food fasting lab
4:00 AM No food fasting lab
5:00 AM No food fasting lab
6:00 AM No food fasting lab
7:00 AM No food fasting lab
8:00 AM Enema
9:00 AM No food fasting lab
10:00 AM Enema
11:00 AM No food fasting lab
12:00 PM Labs
1:00 PM No food but water and possibly broth from after lab to 12:50 drink up!!
2:00 PM 2:50 CT
2:00 PM No drink 2 hr prior
3:00 PM No drink 2 hr prior
4:00 PM MRI (4pm)
5:00 PM No shakes!!! CLEAR BROTHS
6:00 PM Moviprep every 15 minutes till gone
7:00 PM No shakes!!! CLEAR BROTHS
8:00 PM No shakes!!! CLEAR BROTHS
9:00 PM No shakes!!! CLEAR BROTHS
10:00 PM No shakes!!! CLEAR BROTHS
11:00 PM No shakes!!! CLEAR BROTHS

12:00 AM No shakes!!! CLEAR BROTHS
1:00 AM No shakes!!! CLEAR BROTHS
2:00 AM No shakes!!! CLEAR BROTHS
3:00 AM No shakes!!! CLEAR BROTHS
4:00 AM No shakes!!! CLEAR BROTHS
5:00 AM No shakes!!! CLEAR BROTHS
6:00 AM No shakes!!! CLEAR BROTHS
7:00 AM No shakes!!! CLEAR BROTHS
8:00 AM 8:30 Oncology
9:00 AM No shakes!!! CLEAR BROTHS
10:00 AM 10:00 Radiology
11:00 AM Clear liquid - maybe?
12:00 PM no drink 2 hr prior
1:00 PM no drink 2 hr prior
2:00 PM 1:30 Colonoscopy

Yeah, you're allowed to laugh at the fact the dirty word ENEMA is seen TWICE again. Yeah, shoot me now, but at least I get this in a hotel is a "plus" this time 😜 No fast food bathroom for me!! Ha. And as I'm not eating anyway, not sure it matters about the Moviprep, but we shall follow instructions. BUT what this means to me? Chinese food broth!! 😀😀😀 Yeah, small things to look forward to, but I'm grasping for silver linings at this point 😳

Monday, June 26, 2017

Angela's Graduation photos

My girlie is sooooo cute, these photos don't do her justice! So I'm not going to order any. On a plus, I did already hire a photo shoot to get the two together in caps and gowns 😀

Funky eye!! Yeah NOT buying these!

And guess who forgot she was to look AT the camera at the bottom of the stairs? Yeah, this girl. I'm laughing here!!

Love this child, hate these photos!!!

Well-differentiated adenocarcinoma.

And here I thought carcinoma wasn't a bad word. Hum. Good theory.

So we wait. The 5th and 6th will show where we go from here. I'm thinking they were on track with the suggested course of treatments already mentioned.

I'm one of the 95% who have colorectal cancer. Not unique. And so the journey begins.

And work. Don't get me started in work. I have to fill out a TON of papers to get medical telework. Until then I can have two days a week at the bosses discretion.

So we work around appointments and getting my tooth looked at. I heard there is no dental (cleaning may be OK) until we're done. This could suck 😜

Pregnancy did my teeth in last time. We'll see how our and our poison does to them! Sigh.

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 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: http://www.centralgeorgiaradiation.com/ 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)