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! 

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. L 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 :)