I met with my local oncologist today. I like him. I think we will be a good fit. I also saw the facilities. It a nice place. I also got my first follow up with him for after surgery 7 September.
I'll actually start chemo before I'm even released back to work from surgery, so I started the follow on paperwork for telework for the duration. And so the adventure begins.
Here's to seeing how I feel once this gets started. He said to have one one drive me until I find out how I will react. Fair enough.
Monday, July 17, 2017
Friday, July 14, 2017
Day 21 - Optifast.
OK. I'm now at week three.
Well, not until tomorrow morning. But this is a full 21 days on liquid diet.
Is it working? You betcha. Can I tell? You betcha. Can others? Nawh, there are no comments from anyone at work.
2 weeks weight loss: 13lbs (their scale)
3 weeks weight loss: 7.5lbs (my scale)
Yes, that total is 20.5lbs
And this week I'm STARVING!! What the hell!??? I don't do bad in the morning, but at night? Horrible!! Today I had 7am, 11am, 3pm, 5pm, 7pm, 9pm and starving at 9:30. Sigh. Not giving in JUST yet. Not truly emergency mode just yet... adding a Fresca. Maybe that will help then just go to BED!!
Anyway. Here is the results.
Ok I can NOT see the difference from the front. No way, no how...just don't see it unless it's my BOOBS shrinking. I mean come on! Not the boobs!! Honestly bras are fitting a little different, so sadly they may be shrinking 🙁 boooo - hahaha - kidding. Who cares.
The NEXT is where I have to admit the difference.
Yeah there is a difference. I am NOT sucking in. Nope. Not at all. Just standing there all relaxed
May have to go to the gym to exercise the arms there. While I still can (for a while)
So there you have it.
Oh and I read my lab results on my tumors. It was a little scary with thoughts of a DNA something or other. There is a bit more to have them look at as far as the heredity factor of what's going on in there.
I went back and looked at the initial paperwork.
3 polyps removed
1 polyp ablated
1 cancer tumor identified
Next colonoscopy
1 polyp removed
1 biggie identified
Next colonoscopy
Identified biggie removed
1 MORE polyp removed
Yeah. The total is 8. EIGHT. One of the 8 is really a tumor. 1 precancerous. Yeah, something is going on in there pathology report says:
Interpretation: The results of the IHC analysis suggest the presence of normal DNA mismatch repair function within the tumor. Thus, the likelihood that this individual has an inherited colon cancer syndrome due to defective DNA mismatch repair (HNPCC/Lynch syndrome) is reduced but not eliminated.
These results reduce but do not completely rule out the possibility of defective DNA mismatch repair within the tumor because approximately 5% of cases with defective mismatch repair do not show absence of protein expression by IHC. These results also do not exclude the possibility that this individual's tumor is due to an inherited defect in another gene not involved in DNA mismatch repair. A significant fraction of clinically defined HNPCC cases (30% or more) do not have defective DNA mismatch repair as the underlying genetic basis of their disease.
Additionally, we cannot rule out the possibility that this individual or family has HNPCC/Lynch syndrome because this tumor could represent a sporadic occurrence. If there is a strong personal or family history of HNPCC/Lynch syndrome-related cancers for this individual or if this individual has multiple tumors, consider microsatellite instability (MSI) testing on this tumor or a different tumor to further evaluate the possible role of defective DNA mismatch repair for this individual or family.
CAUTIONS: Test results should be interpreted in context of clinical findings, family history, and other laboratory data. A genetic consultation may be of benefit.
So... how's THAT for messed up? Sigh. So. We I assume they are doing the MIS testing they indicated and we will seek out the genetic consultation and see what this means for MY girls!! I guess we won't borrow trouble until we hear more, bug we will investigate for sure!!
Well, not until tomorrow morning. But this is a full 21 days on liquid diet.
Is it working? You betcha. Can I tell? You betcha. Can others? Nawh, there are no comments from anyone at work.
2 weeks weight loss: 13lbs (their scale)
3 weeks weight loss: 7.5lbs (my scale)
Yes, that total is 20.5lbs
And this week I'm STARVING!! What the hell!??? I don't do bad in the morning, but at night? Horrible!! Today I had 7am, 11am, 3pm, 5pm, 7pm, 9pm and starving at 9:30. Sigh. Not giving in JUST yet. Not truly emergency mode just yet... adding a Fresca. Maybe that will help then just go to BED!!
Anyway. Here is the results.
Ok I can NOT see the difference from the front. No way, no how...just don't see it unless it's my BOOBS shrinking. I mean come on! Not the boobs!! Honestly bras are fitting a little different, so sadly they may be shrinking 🙁 boooo - hahaha - kidding. Who cares.
The NEXT is where I have to admit the difference.
Yeah there is a difference. I am NOT sucking in. Nope. Not at all. Just standing there all relaxed
May have to go to the gym to exercise the arms there. While I still can (for a while)
So there you have it.
Oh and I read my lab results on my tumors. It was a little scary with thoughts of a DNA something or other. There is a bit more to have them look at as far as the heredity factor of what's going on in there.
I went back and looked at the initial paperwork.
3 polyps removed
1 polyp ablated
1 cancer tumor identified
Next colonoscopy
1 polyp removed
1 biggie identified
Next colonoscopy
Identified biggie removed
1 MORE polyp removed
Yeah. The total is 8. EIGHT. One of the 8 is really a tumor. 1 precancerous. Yeah, something is going on in there pathology report says:
Interpretation: The results of the IHC analysis suggest the presence of normal DNA mismatch repair function within the tumor. Thus, the likelihood that this individual has an inherited colon cancer syndrome due to defective DNA mismatch repair (HNPCC/Lynch syndrome) is reduced but not eliminated.
These results reduce but do not completely rule out the possibility of defective DNA mismatch repair within the tumor because approximately 5% of cases with defective mismatch repair do not show absence of protein expression by IHC. These results also do not exclude the possibility that this individual's tumor is due to an inherited defect in another gene not involved in DNA mismatch repair. A significant fraction of clinically defined HNPCC cases (30% or more) do not have defective DNA mismatch repair as the underlying genetic basis of their disease.
Additionally, we cannot rule out the possibility that this individual or family has HNPCC/Lynch syndrome because this tumor could represent a sporadic occurrence. If there is a strong personal or family history of HNPCC/Lynch syndrome-related cancers for this individual or if this individual has multiple tumors, consider microsatellite instability (MSI) testing on this tumor or a different tumor to further evaluate the possible role of defective DNA mismatch repair for this individual or family.
CAUTIONS: Test results should be interpreted in context of clinical findings, family history, and other laboratory data. A genetic consultation may be of benefit.
So... how's THAT for messed up? Sigh. So. We I assume they are doing the MIS testing they indicated and we will seek out the genetic consultation and see what this means for MY girls!! I guess we won't borrow trouble until we hear more, bug we will investigate for sure!!
Tuesday, July 11, 2017
Third times the charm.
We chose to drive to Jacksonville this morning. Crack of dawn...I drove down...Butch drove back 😜
First up, blood work (typical) then ECG. All went fine 😀
What wasn't fine was fasting, clear diet, clear liquid diet day prior AND nothing to drink from 11am forward. Ugh!
Lunch for Butch...and I got nada, no water, nada. Insert pity party 😭
Pretty bird in the pond while walking to get stuff from the car.
Back to the clinic..and checked into gastro. New area to visit. It was in the Mayo building. A new one for me to some extent. MRI was there too on the 2nd floor. Gastro is on the 5th floor and very much a hospital setting. There is a central nurses station with about ten curtained "rooms" around it.
This is room 6. Aka my room.
Toe view and nurses station. I got to keep my phone for the duration. 😀. Well, until they wheeled me back. Then it went into a bag with my glasses and was hung from my IV pole 😀
All hooked up and ready to GO!
Last text to Butch 2:03pm. First text after I woke up 3:54. Apparently I woke up quickly as they seemed shocked to come by and see me in my glasses with my phone. Ha! They were on the table close enough to reach. 😜
I did complaint about the new drug. Last time they gave me fentenol the last time. This time it was propofol. It's a much easier more coherent wake up. But no drugged sleep. I stayed awake an hour or so then passed out for majority of the way home 😴
Not too shabby
Reports are already out on the portal with pictures.
Where are all these freaking polyps coming from?
I had NO idea about the one in the cecum area. Sigh. Oh, well. They are all OUT!
Next up the big bad guy and resection.
Good news is this keeps me it's more colon.
So hopefully this will mean a normal bowel function later...I'll take it!
Oh, and I signed up for a study on these types of polyps and the treatment approaches for standard of care. So, I get a 6 month follow up on this area to see jos the treatment worked for keeping reoccurrence down. I'm already in a study fir blood tests for colon cancer and now this one. Call me guinea pig 🐹. Hey, if it keeps others from this stuff. I'm good!
First up, blood work (typical) then ECG. All went fine 😀
What wasn't fine was fasting, clear diet, clear liquid diet day prior AND nothing to drink from 11am forward. Ugh!
Lunch for Butch...and I got nada, no water, nada. Insert pity party 😭
Pretty bird in the pond while walking to get stuff from the car.
Back to the clinic..and checked into gastro. New area to visit. It was in the Mayo building. A new one for me to some extent. MRI was there too on the 2nd floor. Gastro is on the 5th floor and very much a hospital setting. There is a central nurses station with about ten curtained "rooms" around it.
This is room 6. Aka my room.
Toe view and nurses station. I got to keep my phone for the duration. 😀. Well, until they wheeled me back. Then it went into a bag with my glasses and was hung from my IV pole 😀
All hooked up and ready to GO!
Last text to Butch 2:03pm. First text after I woke up 3:54. Apparently I woke up quickly as they seemed shocked to come by and see me in my glasses with my phone. Ha! They were on the table close enough to reach. 😜
I did complaint about the new drug. Last time they gave me fentenol the last time. This time it was propofol. It's a much easier more coherent wake up. But no drugged sleep. I stayed awake an hour or so then passed out for majority of the way home 😴
Not too shabby
Reports are already out on the portal with pictures.
Where are all these freaking polyps coming from?
I had NO idea about the one in the cecum area. Sigh. Oh, well. They are all OUT!
Next up the big bad guy and resection.
Good news is this keeps me it's more colon.
So hopefully this will mean a normal bowel function later...I'll take it!
Oh, and I signed up for a study on these types of polyps and the treatment approaches for standard of care. So, I get a 6 month follow up on this area to see jos the treatment worked for keeping reoccurrence down. I'm already in a study fir blood tests for colon cancer and now this one. Call me guinea pig 🐹. Hey, if it keeps others from this stuff. I'm good!
Monday, July 10, 2017
Surgery date is set
Surgery will be on the 18th of August.
Pre-Op stuff on the 17th.
And I'm totally fine with that date. Would be sooner, but, meh.
Pre-Op stuff on the 17th.
And I'm totally fine with that date. Would be sooner, but, meh.
Son of a.....*****beeeeeeepppppppppppp*******
FINAL DIAGNOSIS (from the pathology during last colonoscopy)
A) Colon, ascending, biopsy: Benign colonic mucosa with prominent lymphoid aggregate. 😀 good news!!
Translation: Examples of benign polyps include hyperplastic polyps (also called metaplastic polyps), lipomas (benign tumor of fat cells), neuromas (benign tumors of nerve cells), inflammatory polyps (localized inflammation) or lymphoid aggregates (a cluster of immune cells).
B) Colon, splenic flexure, biopsy: Sessile serrated polyp/adenoma. 😡😡😡😡 WTF body? Why you gotta do me this way?
Translation: Sessile serrated adenoma and traditional serrated adenomas, however, are premalignant lesions and can progress to adenocarcinoma; adenocarcinoma developing at sites of preexisting serrated polyps has been reported. Sessile serrated adenomas are the principle serrated precursor for colorectal cancer.
So...what we're REALLY doing tomorrow is removing a precancerous lesion/flat polyp. News to me. Pray for clear margins on the removal and then we're done with that part or it's a longer snippy snip. Guess it could ave been worse and been cancer already...then again..what's more cancer when you already HAVE cancer? Sigh.
C) Colon, rectosigmoid, biopsy: Adenocarcinoma. 😳 already known news - this is the big bad guy.
D) Colon, rectum, biopsy: Hyperplastic polyp. 😀 good news!!
A) Colon, ascending, biopsy: Benign colonic mucosa with prominent lymphoid aggregate. 😀 good news!!
Translation: Examples of benign polyps include hyperplastic polyps (also called metaplastic polyps), lipomas (benign tumor of fat cells), neuromas (benign tumors of nerve cells), inflammatory polyps (localized inflammation) or lymphoid aggregates (a cluster of immune cells).
B) Colon, splenic flexure, biopsy: Sessile serrated polyp/adenoma. 😡😡😡😡 WTF body? Why you gotta do me this way?
Translation: Sessile serrated adenoma and traditional serrated adenomas, however, are premalignant lesions and can progress to adenocarcinoma; adenocarcinoma developing at sites of preexisting serrated polyps has been reported. Sessile serrated adenomas are the principle serrated precursor for colorectal cancer.
So...what we're REALLY doing tomorrow is removing a precancerous lesion/flat polyp. News to me. Pray for clear margins on the removal and then we're done with that part or it's a longer snippy snip. Guess it could ave been worse and been cancer already...then again..what's more cancer when you already HAVE cancer? Sigh.
C) Colon, rectosigmoid, biopsy: Adenocarcinoma. 😳 already known news - this is the big bad guy.
D) Colon, rectum, biopsy: Hyperplastic polyp. 😀 good news!!
"What's ten pounds off a whale?"
Ok Ok before y'all get mad I really do not think I'm a whale. Big gal, yes. Whale? No. BUT I had to steal the saying off my Aunt Tuny. It's perfect. 10 pounds sounds like. Lot but not when you need t lose considerably more.
So when they put me on my forced diet thought I would take before and during pictures. So the first 10lbs are off. 2 BMI points.
I should apologize for the Jammie's, but I won't. It is what it is.
Before - day 1
And after - day 14
I even wore the same Jammie's so there is a true comparison. To me, there is no difference.
Ok maybe the side view is a little slimmer, but not much.
And the diet continues.
I have to say I look happier in day 1 - hahaha. Hangry woman!
So when they put me on my forced diet thought I would take before and during pictures. So the first 10lbs are off. 2 BMI points.
I should apologize for the Jammie's, but I won't. It is what it is.
Before - day 1
And after - day 14
I even wore the same Jammie's so there is a true comparison. To me, there is no difference.
Ok maybe the side view is a little slimmer, but not much.
And the diet continues.
I have to say I look happier in day 1 - hahaha. Hangry woman!
Saturday, July 8, 2017
Colposcopy report
I found out that they weren't using a cute nickname fir Dr B. Her name WAS Dr Bi. Ha! Funny!
So without cuter pomp. The results are suspect...
The did biopsy and pictures in ALL of the following places
So the super suspect area is around #17 area. Now, if you WANT to see pictures I will send them to you. Let's just say it's NOT all pink and pretty.
So. I asked if that area turned out to be malignant will it change the overall game plan and the answer was no, however they may resect quit a bit more. As in resect from about #29 through #16 or higher. Still will be able to put me back together in the end (yes, punny)
The sizes remain the same 5cm on the defined malignant area already identified. And 20mm on the new area. So. It looks HUGE in the pictures, but it's not changed, it just has a "face" and a name now. Now we evict!
The scoop procedure on the 20mm one at the splenic flexure will happen on the 11th. Yes, next Tuesday. The full surgery will follow once they get the pathology from the scoop.
They wanted to schedule me for the 11th of August. When they told me the date I said yes, then had the epiphany THAT is Angela's move in date for college. I burst into tears and told them there was no way that I could do that date! That poor lady on the phone! After I calmed down down she assured me they would find another date.
What I ALSO found out is that this diet is NOT doing me any favors on the emotional forefront. It's known to cause emotional upheaval. Yeah, great, thanks doc. Insult to injury at this point!
So..there you have it. Another cleanse. Another ride to Jacksonville, BUT Butch arranged a trade with a coworker to use his house and trade for use of ours in FWB when they want. Works for me! Not happy about two plus days off work. Hoping I can get a few hours in Monday morning. The work some after hours. Time to request to borrow sick leave, I guess. Sigh. It's going I run out QUICK at this rate.
A bright spot(s) is that I get to NOT do the horrible prep. I get to do the Dulcolax/Miralax combo - YAY! No more salt water! Whoooohooooo! AND I get broth again as well as jello (possibly) the house doesn't have cooking facilities (?) suspect already! I hope it's not gross...one bathroom is pit of commission out of two. Hum...we shall see if this is a tolerable place to sleep or not!
Silver linings even with prepping 😜
So without cuter pomp. The results are suspect...
The did biopsy and pictures in ALL of the following places
So the super suspect area is around #17 area. Now, if you WANT to see pictures I will send them to you. Let's just say it's NOT all pink and pretty.
So. I asked if that area turned out to be malignant will it change the overall game plan and the answer was no, however they may resect quit a bit more. As in resect from about #29 through #16 or higher. Still will be able to put me back together in the end (yes, punny)
The sizes remain the same 5cm on the defined malignant area already identified. And 20mm on the new area. So. It looks HUGE in the pictures, but it's not changed, it just has a "face" and a name now. Now we evict!
The scoop procedure on the 20mm one at the splenic flexure will happen on the 11th. Yes, next Tuesday. The full surgery will follow once they get the pathology from the scoop.
They wanted to schedule me for the 11th of August. When they told me the date I said yes, then had the epiphany THAT is Angela's move in date for college. I burst into tears and told them there was no way that I could do that date! That poor lady on the phone! After I calmed down down she assured me they would find another date.
What I ALSO found out is that this diet is NOT doing me any favors on the emotional forefront. It's known to cause emotional upheaval. Yeah, great, thanks doc. Insult to injury at this point!
So..there you have it. Another cleanse. Another ride to Jacksonville, BUT Butch arranged a trade with a coworker to use his house and trade for use of ours in FWB when they want. Works for me! Not happy about two plus days off work. Hoping I can get a few hours in Monday morning. The work some after hours. Time to request to borrow sick leave, I guess. Sigh. It's going I run out QUICK at this rate.
A bright spot(s) is that I get to NOT do the horrible prep. I get to do the Dulcolax/Miralax combo - YAY! No more salt water! Whoooohooooo! AND I get broth again as well as jello (possibly) the house doesn't have cooking facilities (?) suspect already! I hope it's not gross...one bathroom is pit of commission out of two. Hum...we shall see if this is a tolerable place to sleep or not!
Silver linings even with prepping 😜
Thursday, July 6, 2017
One small step for me....the other shoe
Aaannndddd the other shoe drops. Never ever use Dr Hellwege.
This doc Dr B cute small Asian lady, found TWO more polyps one removed. One will need special procedures. I even woke up at the end of the procedure and got to see the bastard. It really isn't pretty.
Dr Landman called as I was sitting g outside waiting for my ride. He was talking to a drugged woman just out of colonoscopy, so memory is foggy. In the end Butch drive up and I handed the phone to him to ask his questions as well. I crawled in the back of the car and was OUT!!
Butch seems to think it's another cancer but smaller. It will require another colonoscopy but a specialized one to remove it. Then the big surgery following that. Every effort will be made to avoid ostomy. And the saga continues. Better to know now.
The doc there in WR sucked for sure!!
I missed a call from Mayo apparently to schedule the follow on appointment. I was sleeping and my ringer was off 😁
I'll call them tomorrow to set that schedule.
I slept ALL the way home. I got in the car and slept until Valdosta. Got out, peed, had a shake and went right back to sleep!! Slept until we got off the freeway here. Zzzzzzz. Drugged sleeps are good!!
This doc Dr B cute small Asian lady, found TWO more polyps one removed. One will need special procedures. I even woke up at the end of the procedure and got to see the bastard. It really isn't pretty.
Dr Landman called as I was sitting g outside waiting for my ride. He was talking to a drugged woman just out of colonoscopy, so memory is foggy. In the end Butch drive up and I handed the phone to him to ask his questions as well. I crawled in the back of the car and was OUT!!
Butch seems to think it's another cancer but smaller. It will require another colonoscopy but a specialized one to remove it. Then the big surgery following that. Every effort will be made to avoid ostomy. And the saga continues. Better to know now.
The doc there in WR sucked for sure!!
I missed a call from Mayo apparently to schedule the follow on appointment. I was sleeping and my ringer was off 😁
I'll call them tomorrow to set that schedule.
I slept ALL the way home. I got in the car and slept until Valdosta. Got out, peed, had a shake and went right back to sleep!! Slept until we got off the freeway here. Zzzzzzz. Drugged sleeps are good!!
One small step for ME
This morning I had to get up early as I failed to finish that damn prep the night before. Urp!!!
I got up. NOT ready for a colonoscopy. We'll let your imagination fill in that gap, thank you very much!
I drank the other half of the liquid from hell. Success!! In the meantime the sun was rising and I got to appreciate the view I couldn't see in the dark!! 😄
And rewarded myself with the clear soup from the night prior that I got to go!!
Yummy!! 👅
It really was a great room with a GREAT view. Too bad we didn't get to fully enjoy the day!! Oh well, another time.
Then off to my first meeting. Oncology. Why does that word just strike fear in a body? Well it did, but I calmed down. I asked my questions if the PA then she and the doctor went to see the scans and review them with radiology.
The doc came in and told me that it all looks contained and if there are nodes involved they are near ones. He didn't feel that it was necessary to do chemo radiation first but to take me straight to surgery. Then follow up with chemo after.
Great news!! He said it wouldn't give much, if any benefit to even do chemo first. Won't change my odds regardless. Ok. Works for me. Trust the experts.
So with that they cancelled my 10am with radiology! Yay me. They will contact Dr. Landman and fill him in and discuss with him the choices they are making on the chemo and radiation front.
Yay me!!!
Sad when surgery sooner is a plus, right? So next appointment is dietician. Then colonoscopy at 2:30. Then the nap on the way home.
No idea when surgery is. No idea how long I'll be in the hospital and no idea if I get an ostomy yet. Baby steps. Baby steps.
I got up. NOT ready for a colonoscopy. We'll let your imagination fill in that gap, thank you very much!
I drank the other half of the liquid from hell. Success!! In the meantime the sun was rising and I got to appreciate the view I couldn't see in the dark!! 😄
And rewarded myself with the clear soup from the night prior that I got to go!!
Yummy!! 👅
It really was a great room with a GREAT view. Too bad we didn't get to fully enjoy the day!! Oh well, another time.
Then off to my first meeting. Oncology. Why does that word just strike fear in a body? Well it did, but I calmed down. I asked my questions if the PA then she and the doctor went to see the scans and review them with radiology.
The doc came in and told me that it all looks contained and if there are nodes involved they are near ones. He didn't feel that it was necessary to do chemo radiation first but to take me straight to surgery. Then follow up with chemo after.
Great news!! He said it wouldn't give much, if any benefit to even do chemo first. Won't change my odds regardless. Ok. Works for me. Trust the experts.
So with that they cancelled my 10am with radiology! Yay me. They will contact Dr. Landman and fill him in and discuss with him the choices they are making on the chemo and radiation front.
Yay me!!!
Sad when surgery sooner is a plus, right? So next appointment is dietician. Then colonoscopy at 2:30. Then the nap on the way home.
No idea when surgery is. No idea how long I'll be in the hospital and no idea if I get an ostomy yet. Baby steps. Baby steps.
Wednesday, July 5, 2017
Mayo day 1
Well prep this morning was traumatic. Invasion number one went OK. I suck at doing these. Zero control. Can't hold anything in. Sigh TMI I tell ya!! Invasion number two went OK but there was BLOOD. Yikes. I messaged the clinic.
They just don't see bleeding as an issue unless you are losing too much blood.
So off we go to the clinic. We went to our "tonight" hotel to see where it was. It's close and Mayo is super close to the bayou and the beach as well.
We headed back to do my blood work. That was done and we found we had 2 hours to kill. We went to a Goodwill. It was not a great one. We drove around and looked at the neighborhoods. It reminded me a lot of Southern California. Very nice.
Back to the Clinic.
The fountain in front of the buildings.
My view waiting for CT.
In for the CT. They left my IV port in for use at the MRI later.
The CT was quick and had contrast. They said that there would be a possibility of feeling very warm in my crotch like I had to urinate. That was an understatement. It felt like I already peed. Yikes! I didn't.
So off to the MRI scheduled at 4pm. That too was a hurry up and wait. I got here about 1/2 hour too early. OK fine. I waited. Checked in and at am still waiting at 5:40 as I type.
Butch is going down to pharmacy to pick up my colon prep for tonight. Fun fun fun.
And we wait.
I got called back for the prep when I first got in there I was so smart in that I had NO metal on me at all. Cotton sports bra, all cotton shorts. All cotton all day. Even my pony tail had no metal!! Then they told me what my prep would be. Gel inserts, yes, plural. Where you ask? Well one was to be vaginal. One was to be rectal. Oh friggen hell. So. I changed out to THEIR pants, thank you very much. Sigh. I got the pleasure of doing to more "personal" insert just before being called back at 6:11. Yes, you read that right. TWO hours late!!
So for those that have rectal problems I just want to say I'm VERY sorry for you!! The insult to injury? The vaginal, you know the one that can handle a larger tube? Yeah that one got the pencil thin insert. The bum?? Yeah. They hate me!! It was friggen HUGE (ok, bigger than the probe!) and the goo was BLUE. Really?? Blue goo. In. Your. Bum.
Lordie!!!!
So. I get on the table. They fire it up. I get one full set with nothing. Doing OK even though it's a longer "tunnel" than the one In Perry. Still doing OK. Get a shot of something. Back in for another series. Yeah, back starting to hurt and you can NOT move. Period. Don't move your hips. Period. What is now killing me? My back bone at just above my coccyx or maybe it was my coccyx. Ouch!!! I still have one more set to do AFTER contrast. Sh*t. Sh*t. Sh*t. Hurting!!!!
Now should I tell you my pants are still dropped as they had me drop my drawers when I got on the table the did the deed? Yeah. So I didn't pull up as there was a pad under me. So. There I was in a huge amount of pain from my back. Holding as still as I could. And when they released me the first thing I wanted to do was pull my legs to my chest!! I warned the gal first, apologized and did what I had to in order to get the kinks out!!! Owie!!!!
I hobbled out. Super glad o had THEIR clothing on. Went to the restroom to change with a few wash clothes. Ugh!! Hobbled out to Butch. Then got a nice walk to the car... stretched it out a bit.
Then off to Chinese to get tea and soup. I didn't eat the chunks. Just the broth. And ordered some to go as well. I'll have that in the morning for breakfast ;)
And now I'm home at the hotel trying to choke down the prep.
Oh yeah! That is what I think about it all!!
And we have an ocean front room that I can't enjoy. It's too hot while drinking this crap to sit out there. Thanks. No. Too hot and humid for feeling full bloated and vomit like.
Urp I swear if I would just poop and prove I'm clear I would stop drinking. It's a THREE hour process that was delayed way too late and I'm freaking tired!!! It's 11am.
They just don't see bleeding as an issue unless you are losing too much blood.
So off we go to the clinic. We went to our "tonight" hotel to see where it was. It's close and Mayo is super close to the bayou and the beach as well.
We headed back to do my blood work. That was done and we found we had 2 hours to kill. We went to a Goodwill. It was not a great one. We drove around and looked at the neighborhoods. It reminded me a lot of Southern California. Very nice.
Back to the Clinic.
The fountain in front of the buildings.
My view waiting for CT.
In for the CT. They left my IV port in for use at the MRI later.
The CT was quick and had contrast. They said that there would be a possibility of feeling very warm in my crotch like I had to urinate. That was an understatement. It felt like I already peed. Yikes! I didn't.
So off to the MRI scheduled at 4pm. That too was a hurry up and wait. I got here about 1/2 hour too early. OK fine. I waited. Checked in and at am still waiting at 5:40 as I type.
Butch is going down to pharmacy to pick up my colon prep for tonight. Fun fun fun.
And we wait.
I got called back for the prep when I first got in there I was so smart in that I had NO metal on me at all. Cotton sports bra, all cotton shorts. All cotton all day. Even my pony tail had no metal!! Then they told me what my prep would be. Gel inserts, yes, plural. Where you ask? Well one was to be vaginal. One was to be rectal. Oh friggen hell. So. I changed out to THEIR pants, thank you very much. Sigh. I got the pleasure of doing to more "personal" insert just before being called back at 6:11. Yes, you read that right. TWO hours late!!
So for those that have rectal problems I just want to say I'm VERY sorry for you!! The insult to injury? The vaginal, you know the one that can handle a larger tube? Yeah that one got the pencil thin insert. The bum?? Yeah. They hate me!! It was friggen HUGE (ok, bigger than the probe!) and the goo was BLUE. Really?? Blue goo. In. Your. Bum.
Lordie!!!!
So. I get on the table. They fire it up. I get one full set with nothing. Doing OK even though it's a longer "tunnel" than the one In Perry. Still doing OK. Get a shot of something. Back in for another series. Yeah, back starting to hurt and you can NOT move. Period. Don't move your hips. Period. What is now killing me? My back bone at just above my coccyx or maybe it was my coccyx. Ouch!!! I still have one more set to do AFTER contrast. Sh*t. Sh*t. Sh*t. Hurting!!!!
Now should I tell you my pants are still dropped as they had me drop my drawers when I got on the table the did the deed? Yeah. So I didn't pull up as there was a pad under me. So. There I was in a huge amount of pain from my back. Holding as still as I could. And when they released me the first thing I wanted to do was pull my legs to my chest!! I warned the gal first, apologized and did what I had to in order to get the kinks out!!! Owie!!!!
I hobbled out. Super glad o had THEIR clothing on. Went to the restroom to change with a few wash clothes. Ugh!! Hobbled out to Butch. Then got a nice walk to the car... stretched it out a bit.
Then off to Chinese to get tea and soup. I didn't eat the chunks. Just the broth. And ordered some to go as well. I'll have that in the morning for breakfast ;)
And now I'm home at the hotel trying to choke down the prep.
Oh yeah! That is what I think about it all!!
And we have an ocean front room that I can't enjoy. It's too hot while drinking this crap to sit out there. Thanks. No. Too hot and humid for feeling full bloated and vomit like.
Urp I swear if I would just poop and prove I'm clear I would stop drinking. It's a THREE hour process that was delayed way too late and I'm freaking tired!!! It's 11am.
4th of July weekend
Not sure why Angela and I are always in selfies 😜
Lizzie is walking the dog back to the family... just walking the beach for sunset. Ahhhhh
We also went to Stewby's as its tradition. I got a Diet Coke 😭. That's OK it's just temporary....next 4th hopefully I'll haven me some Stewby's!!
Thursday, June 29, 2017
T3N2 aka " Can I buy a bowel for $1,000 Pat" (credit to Sue - made me laugh!)
So. I went to the local doc today for a follow up on to their MRI. Got horrible responses to everything from him. He was just a jerk about Mayo wanting to redo some of the reports. It's not like HE did the CT or MRI. Geeze! Anyway, this approach was done in an effort to get my stinking telework letter done.
What a freaking joke. I gave them a template and everything. Yeah, nope. Sigh. The only thing that this visit accomplished was to tell me a tentative stage (will continue confirm with those I trust better) and get me to oncology quicker than waiting for the 7th when I talk with Mayo.
So, bonus. I should be fast tracking to Oncology starting around the 10th if all goes well. Now it's just a matter of finishing testing at Mayo. Meeting the oncologist and the radiologist there, discussing treatment plans and options.
I was hoping for less than T2, but really, who are we kidding with everyone's reaction, right? Hopefully biopsy of the lymph nodes will prove it's just swelling, or at worse just a few of them are involved in this rebellion. BUT that won't happen until surgery...so first thing to decide -radiation or no radiation. Ultimately it's a suggestion and I can chose to,disagree, but really? Will I? I didn't argue with the strict liquid diet, now did I?
Then the real fun starts...
What a freaking joke. I gave them a template and everything. Yeah, nope. Sigh. The only thing that this visit accomplished was to tell me a tentative stage (will continue confirm with those I trust better) and get me to oncology quicker than waiting for the 7th when I talk with Mayo.
So, bonus. I should be fast tracking to Oncology starting around the 10th if all goes well. Now it's just a matter of finishing testing at Mayo. Meeting the oncologist and the radiologist there, discussing treatment plans and options.
I was hoping for less than T2, but really, who are we kidding with everyone's reaction, right? Hopefully biopsy of the lymph nodes will prove it's just swelling, or at worse just a few of them are involved in this rebellion. BUT that won't happen until surgery...so first thing to decide -radiation or no radiation. Ultimately it's a suggestion and I can chose to,disagree, but really? Will I? I didn't argue with the strict liquid diet, now did I?
Then the real fun starts...
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 :)
5th
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
6th
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 😳
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 :)
5th
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
6th
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!!!
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.
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 😄
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 🤓
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: 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)
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)
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.
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.
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.
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