Wednesday, October 18, 2017

Treatment 3 and The pig house

What I post In the colontown group


What I post for friends :)


Step one make a nest in top of a pillow


Step two place squealing pig in nest


Step three and four put pillow over the whole mess and break out ear plugs.


Good night all!!

Tuesday, October 17, 2017

Mortality, guilt and well, just ramblings

So, after reading a great article from one of my many colon cancer sights on Facebook - this one happened to be a great post by Julie Yip-Willams about how her life and illness with colon cancer will be published posthumus by Random-house; Her words hit close to home.

When I was first diagnosed, I refused to look at my odds
Weird, I know.
But, really - why look? It won't change anything... it won't change the outcome, it won't improve my overall mood to know that I have a 20% chance of dying from this. So - then today I thought - what are my chances of dying of something ELSE I do?

Like Scuba? Yeah, 1 in 34,400 (.003%).

OK, how about skydiving? not that *I* do that... 1 in 101,083 (.001%).

Hum...swimming? 1 in 1 Million (.0001%)

driving a car? 1 in 6,700  (.014%)

Chances that I'll even GET colon cancer at my age? .5%

How very scary is THAT number?
now of that .5% of the world that managed to hit the odds.. I now have a 63% chance of survival rating at 5 years... again, another scary statistic.

Is it realistic... sure, I'm sure it is.
But I'm a STRONG person... I was healthy before this *(relatively) and continue to be healthy throughout this..So, I chose to NOT look at any sort of statistics - well, really before today in depth.

Now that I look at them I get a little shaky as those odds are scary - I'm glad I'm on the positive side of them however!

I did also have someone share a video of a gal with Cystic Fibrosis and her positive view on death... I'm so glad that my folks have always talked about death opening and always with "I've lived a good life, don't cry for me when I'm gone" attitude.

Not that we would be able to do that, but we would definitely know that they knew they had a good life and enjoyed it fully. Bumps in the road and all.

Their attitudes have helped me know that it's just "life" and part of life is death... knowing living on a farm that if a calf was sick, odds are it would die... and dad would also tell us not to make friends with that calf or that calf as their names were "deep freeze".
Ha!
We also had pigs... can I just tell you I would be cleaning their super stinky pig pens and telling them... "can't wait until you are bacon!" LOL.

People are different.. we'll be sad, but I do have faith that I will see them again in heaven. I was raised Mormon for those that don't know (only a few of you reading are not my family, I'm sure!). Anyway, that part has always stuck with me. Yes, I think I will be able to see my family in heaven, that I will even see the wee baby I lost between the two girls (it was a very early pregnancy, but still hurt, the minute you see that (in my case faint - should have been my first hint) line on the test, you make plans, your hopes are there for that baby to be).

I've always just sort of bounced through things without much of a thought... C-section for a very sick little preemie? yeah... do what you have to just make sure she's OK. Keep her in until you know she's got a better chance of survival without killing me. OK. NICU for 3 weeks. OK. What's next? Keep moving forward.

So... reoccurance... scares me.... I don't think there are any statistics for that, but you have to figure my percentage of being alive for 5 years is 63% that would give me the balance to be in the recurrence factor - so 37% chance of recurrence and/or death? AND where it reoccurs will have a huge bearing on what your chances are - in the colon? About the same as it was before based on the stages... if this crap spreads anywhere else? Well, then, game on. It will be a whole other world. How's that for scary reality checks? Yeah... this is why statistics are bad. At least for my brain and my emotions.

THEN we get into the guilt factors... I was diagnosed the very same day that my SIL was diagnosed with metastatic breast cancer. What are the odds? What a shit deal for the both of us! Part of it is good - we can both relate to the chemo, the medical talk... the whole "I'm too tired to function" part. I'm glad I chose to go forward with my IV chemo. I hear what L faces with hers and her regime is what I could have been on... two weeks of oral chemo, one week off, rinse and repeat.

Why didn't I do the oral? Well, I would have to have a port regardless as the Oxaliplatin is a horrible drug for IV's - it has the potential to actually turn your veins black. Yeah, welcome to the choice to poison your body in hopes of killing all the bad crap without a) killing yourself or b) doing more damage than good. Fun stuff, eh? These are the choices were are given... so you want poison A with this huge laundry list of side affects or B with similar side affects but with the added bonus of xyz? Yeah... I chose to go with the IV pump for selfish reasons - it would only be 2 days and would come with less gastrointestinal issues... I figure my intestines have already faced enough trauma and honestly diarrhea scares me with a bag. I actually didn't avoid that at all either.. sigh. So... I'm 1 day of Oxaliplatin infusion over a 2 hour period - then 46 hours on a pump at home. Handy dandy pump... the pig. It pumps every few minutes and sort of squeal when it's doing it's business... I have adjusted. I now put it in a nest of blankets to the side of the bed and put another pillow over it (one under as well) and I can barely hear it now... but still wear earplugs to drift off...

Back to the guilt factors... I feel guilty that I'm doing good through this. That's not to say there are no symptoms, but what I have is easy to work around.. I hear that she's sleeping a lot... way more than me and for way longer.. I wonder now that I'm musing over this if this is due to her meds being for two weeks? That could very well be as I only really have three days of actively pumping crap in, then I get the remainder of that two weeks with nothing more being introduced.

I feel guilty because L is ALWAYS chipper and cheerful no matter what!! Every time I talk to her, she is always up beat and doing great! Why does this make me feel guilty? Because I feel like a fraud. I will put a smile on 99% of the time.. even when I feel like sh*t warmed over... I'm sure she's doing the same... but I feel guilty because I think in the back of my mind that I'm now what they would consider NED - No Evidence of Disease. as of my surgery they claim there is nothing there... that I'm just taking chemo as a "mop up" effort to get anything that may be lurking... and I know L is Stage 4 - already metastasized.... I know that's not a death sentence after seeing a ton of folks on my groups who are stage 4, but I know for her it could mean a lifetime of chemo and a lifetime of treatments, surgeries and changes to her life. That makes me sad for her, and makes me feel guilty that I'm not having to face that.

Survivor's guilt? Guilt because I kept my hair - although thinning it's really all still there. It's a weird feeling... feeling guilty for feeling healthy. I see folks at the cancer center who are about my age who look like they are 90 - really... one man came to get his wife and I was thinking it was his mother, she was so thin and frail... nope, his wife. Scary stuff this cancer.

.. don't get me wrong, I'm super grateful that I'm feeling like I do... and I do know it could change at the drop of the hat. I'm 1/3 of the way through and as of tomorrow I will be starting into the 1/2 way point... 3 of 6 treatments... then I get scanned every three months for a bit... then it goes to every year... then once I get to 5 years who knows. Maybe every three years? I haven't gotten to that part of the thinking yet... just get to December, stay healthy while getting to the end of treatments... then schedule the reversal surgery.

The reversal surgery... that's another whole nightmare thought process of not having a rectum to speak of anymore... how on earth will this work??? Will this work?? Will I be incontinent? Will I be able to control myself or be limited to eating only when I know I will be close to a toilet? I can't imagine doing what some of these ladies do - they don't eat all day. I can do a lot.. but not eat all day? Nope, not ever. Even when on liquid diet I was consuming calories. I do have some of that left... I guess I could revert to that.... it did constipate me... maybe that would be the trick? LOL

The thoughts that have to flow through now are just weird. but again, it's life. It's my life. It's a mess... but it's mine and we'll work around it.

So, now that I have scared the sh*t out of all of you... know that really I'm OK, these are fleeting thoughts through my pea brain.... and I haven't been as sick as I was that first treatment where I honestly thought "what the h*ll was I thinking signing up for this????"

Yeah, that's not happened again. Maybe it's taking meds right, maybe it's just knowing I will be tired and nauseous and I take THOSE the minute my stomach feels "off" now. I don't play with that feeling anymore! I don't want to look at the TV and think things look like they are "oozing" instead of just juicey - ha!

Saturday, October 14, 2017

The great pantry clean out

What brought this on? Liz mentioned this a while ago and it's been on my mind since!!

So today was the day and it was a GOOD thing I did! There was evidence of a mouse in the house!!!


There were a few things chewed. Yuckie!!

The first thing to do is take EVERYTHING out!! Yep, everything!!! Ok so
The "cansolidator" didn't really come out and stay out. It came out in pieces the was relocated one shelf down


The next step was to put it all BACK in!! Wow. The organization included date checks! The oldest thing was 2007! Whoops. It was hidden in a container in the back of the cupboard.

I ended up chucking 2.5 bags of garbage. Three grocery bags of goodies for mom if foods we will never end up eating.


Mom was my date checker and moral support through the effort! It was a LOT of stuff to go through!!


I admit I got about half way done putting it back in and then pooped out. Mom and I sat in the living room and chatted for a bit. She went home to feed dad and I got back at it.

I finished up, vacuumed the kitchen and then laid down for the rest of the day.

662 steps right in this house. Back and forth and back and forth 😜.

Haven't done this in a while








I'm down 55lbs. Holding steady but still losing S. L. O. W.
But not gaining. Working in it counting calories and trying to behave.

Some days are better than others!!

Thursday, October 12, 2017

Guess who got IN the pool today?

Yep - ME!!



Going IN!!!


Floating on the pretzel as my queen chair was dead, dead, dead. I didn't have the energy to blow up a new one.


I couldn't see CRAP in the sunshine! I didn't get any other pictures, try as I might and even with a water proof case.

What brought this on? Discussions with everyone about how HOT it is and me thinking.....nooooo, it's FALL. Well der, I stay in the house 99% of the time. So yeah it was time to get my butt out of slug mode.

I did about 10 (hahahaha more like 5) minutes of water aerobics type moves in the deep end. Mostly bicycle and arms swishing on the sides but it was something 😄

Audrey did fine and honest it was change day and I had been procrastinating, so I got out, got showered changed and am ready for bed! Ha! Yep. My life is sooo thrilling.


Tuesday, October 10, 2017

Amazing!

Well it's amazing what happens when you take your meds the RIGHT way! Ha!

I took the steroids two per day for the three days and really the change is amazing.

I'm still tired don't get me wrong but it's NOT the emotional tired of "what the hell was I thinking doing chemo" tired.

I made it to Ikea - granted just in and out the back door and no further. No wandering. Just in and out. Then to the pizza place that we LOVE there near Ikea. Antico-Pizza Napoletana. Telling you, it's like being back in Italy for a minute. I wanted spicy pizza as my mouth feels a bit "off" and fuzzy. So we got the hot pepper one. Yum!! Butch was cute. He looked at the smaller pizza and said "that's not enough". Yeah, it was. My tummy doesn't hold much anymore and two small pieces was plenty for me! They were quite happy with their reminding pieces. :)

I then slept most of the way home - zzzzz yeah. Tired but not exhausted.

Tried to eat my ice cream (well really frozen custard) from Freddie's again. Nope. Not happening yet. Still way too tingly in the mouth for that!! Ha!

Had lots of diarrhea that day. Not sure if it's the chemo or the pizza but as the day(s) wore on I think it's the chemo. Ok can deal with that.

Monday rolled around and I'm still tired but again NOT exhausted. A little weaker than normal but OK. Went to physical therapy to get some exercises to strengthen the pelvic floor. They seem easy enough.

They did mess up my appointment and put me in the Pavilion instead of out by my house. OK. Who cares. I made it finally. :)

Then Elizabeth and I headed to Moms house to drop off Linda's info and get her car she had left there the day prior. We had a nice visit with them and Linda is feeling much better - yay!!

I had thoughts about going to the Fair but honestly just didn't want to go. Next year maybe 😜

Right now the only complaint I really have is tingling in my tongue and lips when eating cold things or using metal utensils. It's interesting. I did power through that custard last night and honestly had my tongue go a bit rogue in me and be useless for a bit. It was a tiny bit disconcerting as I couldn't talk right but it passed. Yeah, yeah, yeah don't do that again. I get it. It was soooo good though. Worth the weird feelings
😄

Rough spots inside the mouth are there still. No sores yet. Maybe I'll avoid those? I've moved to a soft toothbrush when I start getting "rough" to be more gentle with the skin. Hopefully that will help.

Nausea was at bay the whole time - had a minute of nausea for just a second then it went away. Which is bad because I just want to eat and eat and eat. While trying to lose weight or maintain that's not good.

My eyes are seriously taking a daily hit too. Blurry like sleepy eyes. 😳 oh well it's livable. Oh. And my nose. I feel like the lining is wonky. Not quite a bloody nose but in the verges of getting one. Dry and building up yuck. Bloody boogers. Gross eh?

The BEST news is the back pain is gone!! Yep. I use the milkweed balm the first few days and it lessened and is at bay for now! Yay!!

So. 6 days out and feeling pretty darn good. Hopefully my immune system is holding steady and all is well in that front. To be honest. I'm confident I WAS super healthy before this and will be able to tolerate this while thing well throughout. That first week was hopefully a fluke due to how I messed up the steroids. 😄

Sunday, October 8, 2017

Sunday update.





A new hernia belt. Sad when a package shows up with medical supplies and you're super happy about them. Ha! It's so much lighter than the HUGE heavy binder that they gave me in the hospital and "modified" for me with a simple hike. Ha!


Hair loss report. Thining is about all we are seeing still with round two. I can live with that. Reality is that I can live with just about anything as long as I'm alive, ya know?


Is it my imagination or is that hernia belt making the appearance slimmer? I think it may well be.


Side view. I didn't weigh myself. It's to depressing as it is going SO much slower after the whole super low cal diet. About 2 lbs a week or so. Sigh. Last I weighed I was at 53lbs last weekend


Saturday night I decided to get a jump on nausea- just in case... I didn't like that last time. So here is the radioactive color pill - ha! Talk about BRIGHT!!


And Sunday morning in the porch very reminiscent of last Saturday... so yeah thinking I just pushed the exhaustion clock by a day. But that's OK too. I have been tired and blurry eyed (sleepy eyes) for the last two nights and muddled through. Will continue to do so.

I did go see Linda yesterday at Moms. Poor Linda is so sick. I was precautions and didn't touch anything and washed my hands when I left. Just in case. I feel so bad that she's not well, but it was good to see her. Elizabeth and Butch are going to drive her rental to ATL tonight and she's going to stay another few days to recuperate and be able to make it home without incident :( I may go with them as I'm still feeling pretty good in short spurts and will nap in the car if it comes to it :)

And as of lunch NO MORE TAPE


There's surgical glue there still there but the tape is GONE!!

Friday, October 6, 2017

Chemo 4 over. Disconnect day

11 days of freedom!


Headed in... dressed AND showered. Adjusting to bag life. I hung it outside the shower today then dashed out to get it pulled.


Back home and at work. Again.

All is well with the world.
Cold sensitivity is still there.
Diarrhea eased up
Feeling tired but early wake up at 5:30 exacerbates that I'm sure. Not sure what's up with that issue. Emptied bag at 5:30. Couldn't go back to sleep. Sigh.

Back is holding steady. Not sure if that's due to milkweed balm that was recommended or paying closer attention when I'm clenching and forcing relaxations. Either way I'll take it!!

6 hours later the reality



Sleep sounds lovely right now 😄

Thursday, October 5, 2017

Pig in the house! 🐷 🏡

The pump affectingly know as the pig is back. I have heard a few more hints about how to muffle her

She is now being tucked between two pillows AND nested in a blanket to boot 😜 AND wear plugs. I didn't hear a thing when I went to bed!! Zzzzz

At 3:30 I woke for bag empty. Ok that's better than last time for sure. I think I had three empties the first night last time. I ate heavier at lunch the day prior so I think that helped.

The only thing was a crawled back in bed and laid there and laid there. Yep could NOT go back to sleep. I got up and went to the recliner. I did Facebook for a bit then about 4:30 or 5:00 I thought. Hum I could sleep now so
I grabbed my blanket and pillow and went to lay on the couch. It was actually NICE to have a backrest and be on my side. Zzzz snores for an hour before Butch's alarms started. One of which in the kitchen. Sigh. I did go back to sleep
After that, thank goodness. 😄

I snoozed until my alarm went off in time to have me roll up to the computer for my job.

Worked and had thoughts of sleeping at lunch. Didn't happen. I made some lunch for Lizzie and me as she was here. Enjoyed a bit of downtime during lunch then back at it. I'm on a roll the last few days (6 now) I've been doing full days of work. It's about time.

I DID take an hour nap after work though 😄 zzzz

It's been 6 weeks since surgery. It's time to get back at it. I still have 32 hours of annual leave on the books and have 4 whole hours of sick leave leave on the books. That's a good thing is I didn't have to dip into borrowed sick leave or beg for leave just yet, so that's a good thing.

I still may have to in the coming months for the reversal however we will deal with that when the time comes. It's still a way off.

As of today symptoms are about the same:
Hoarse throat
Cold sensitivity that goes to even tap water
A bit of diarrhea (Again less notable with bag)
Increased appetite today. Want to eat everything in sight!! Keeping it under control with calorie counting
Tires eyes (could be the interrupted sleep?)
Back pain is minimal- not creeping in too badly
Sleepy...9pm and ready for bed.

Wednesday, October 4, 2017

Chemo infusion day number two

Chemo infusion day number two!
Mom came with me to experience what the process is. She was so cute. She wanted to come pick me up. I warned her it was a LONG process and not advisable. She scoffed, then experienced it herself. 😜

I came in at 9:30
Wait out front to get vitals
Vitals taken weight loss still at 50 lbs
Wait in the back hall to get nurse assigned
Go to infusion room
Wait to get blood draw
Go back and wait in the back hall
Get assigned room
Wait for doc
Talk to doc
Go to infusion room to start the actual infusion. It is now 11:30

Start pre-infusions
Start infusion at noon


Waiting to see the doc


Number TWO

And now we wait for it to all get pumped in and the pig 🐷 put on for two days. :)

Going home I went by to see Liz. It HIT me in the Starbucks... hum. Get your Benadryl and GO HOME. Yeah. Standing AND talking was not working as my voice was super froggy and crackling.

Weird. Ok. That's a new one. I felt a little hoarse and "breathy" sounding last time. Interesting. So far so good. Going to bed at 10. As the rest of the time will be earlier feel that this timing is good time.

Oh and even room temp water is hitting the throats like ice. That sucks. Hot tea for a bit I guess. 😳

Tuesday, October 3, 2017

Backs feeling better!!!

That moment when you're walking to your bedroom and you notice your backs not killing you. In fact you were sitting quite comfortably there watching TV without having to shift multiple times.

Nice!! And scary as typically pain in an area indicated cancer cells are being attacked. Makes you wonder what's going on at that battle front, eh? Me too. Kill'em all!!!

Monday, October 2, 2017

Yay - baby steps




So what is so exciting about this?  There is no more glaring white "dot" of a bandaid left on my neck - ya!!!!

Cancer life is less obvious without the white bandage in plain sight.  I know it's silly, but it's nice to NOT have outward signs of stuff going wrong.  I hope folks are honest with me about the bag not being that noticeable when I'm not wearing the binder because that thing is super uncomfortable.  It's not that squishy, it's just hard to go potty.  Weird, eh?  but it I wear it above the undies, but under the pants so it doesn't hang out the bottom of my shirts.  This is great, but in a matter of urgency one needs to be able to get shirt up, pants down, binder up, undies down.  Yeah so not worth it to a procrastinator like me! :)

All of me wants to be normal.  I want to go to work and complain about having to go to work again.... well, I do that still complain about having to work, but it's just that I work from home now and fight sitting all day.  My back hurts so badly most days... I have to shift positions all the stinkin' time.  It's better than it was last week, but it's still there, it's still aching.  It's going to be "sorta" OK by the time I go back for treatment #2.  I have to remind myself I chose this.  I could have backed out... but honestly know it's probably the best thing I can do to head off a recurrence - or head off any spreading.  Hopefully.

Yesterday I went into my closet to try on my jeans to see which ones of the snug ones would fit me for New York.  Yeah, none of them fit...they all have a huge gap - they would fall off... maybe I should just invest in a belt?  Hum.. there's a thought.  Shirts are fitting OK still - mostly - some are a bit baggy, but I like baggy.  Part of me is happy about the weight loss, part of me is sad to not have anything to wear.  I think about thrift stores, but they won't have tall pants.  Guess it's time to head out and see if I can buy two pair of pants for the trip - the rest can be slacks that are baggy.

Sunday, October 1, 2017

Weekend update


Hair loss last week after a brush clean out so it's JUST what I brushed out before and after the shower.
Hair loss this week. Same drill.
MAY look a bit like it's more due to me having balled it up a bit more to dispose of it. Hard to tell. I was told that hair loss would/could start and hit the high at about the third treatment. Nutrition is a bit worse now that I'm not getting specific ones through shakes but my output is MUCH more tolerable as it's not liquid anymore. That's a plus!!
And this is what the port sight looks like now. Not too shabby and the bruise is really only noticeable to me when I'm bright sunlight.

I've been cutting back the bandages slowly as they peel up to avoid pulling them on anything. So far so good they are coming off slowly. It's just under two weeks and I know from the belly it takes a while for surgical glue come off very slowly on me!!

Weight forefront in comfortable saying I have lost 53lbs now. It's holding steady and losing SLOWLY. The perils of adding real food to the mix. I'm thinking I should join up with weight watchers and see if I can't make healthier choices in the future. We shall see. I would like to get down about 40 more.

Part of me wonders if I should just hang onto the Optifast as it constipated me and use it during transition as I'm afraid of losing control on that forefront. Decisions decisions.

But if I really AM lactose intolerant then I probably shouldn't 😜

Saturday, September 30, 2017

My girlies!!



I was a mess this day, I had been crying about something to do with the cancer diagnosis/treatment/schedule, something earlier, my hair was a mess, I wasn't dressed for the occasion... I was having morbid thoughts that I wanted to be in this picture so they would remember me before it all changed... before I wasn't "me" anymore... so I jumped in...

I don't feel the morbid thoughts anymore, however, I'm super grateful I DID jump into that picture with these two beauties!!

Wednesday, September 27, 2017

Update...

Well, I haven't updated since Saturday when I was still feeling rather "OK" - that went downhill fast.

Sunday I barely moved from bed to chair to bed... looking at food on TV even made me queasy. Yeah, I was a mess. Monday I woke up and thought "hum...., I could eat"... yeah, hadn't had that thought in a day.

So I ate some cheese grits and then even went out to lunch with Mom, Aunt Tuny and Lynn. It was a nice lunch at Appleby's in Perry








then I went home and took a nap - ha! I'm such a light weight! I tell you, that chemo is not for the weak at all!

So I have had hot flashes, nausea to the point of waking me up in the middle of the night, diarrhea, even when not eating (makes for gross bag emptying lemme tell ya), exhaustion, blurry vision (not bad, more like sleepy eyes), gas (still burping all the time), cold sensitivity (could NOT drink cold drinks for about four days after disconnect), and rough spots in the mouth (a few are sores now, but working around them) and sore back (which according to them is very weird).. and with ALL this? I was told today I'm tolerating chemo well. HA!

Yep, my blood counts are all looking OK for where I am in the process. The symptoms I have are all workable. They aren't horrible. They are not GREAT, by any means, but really? It could be worse, I could be puking my guts up, I could have active sores in my mouth that keep me from eating at all.... BUT the back pain? Holy mother! Yeah, I could live without that crap. I was looking at the pain scale today and for me? I think it's a 5 - meaning it's a sad face. Yeah, they would rate that at an 7 to 9. Sigh... I'm way too tough for my own good at points like these...
So - I'm now going to be taking prescription strength Advil and Tylenol alternating ... then filling (or trying to) the prescription for my heavy duty stuff (OxyCodone) to have on hand if things just get too much. If it's not better by Friday I'm to call them. But really? What are they going to do about it all? Gimme drugs. I will have drugs on hand and will take those and hope for the best.
Sigh. This stuff sucks.

Sunday I felt like I had been hit by a truck and had the flu. I was looking at the clock at 8:30pm and going to sleep and sleeping until 8am - yep... you read that right AND taking a nap to boot. It's sooo sad. Last night even I was looking at the clock and thinking "what is acceptable for me to just ditch out and go to bed?" it was 8:30pm. Lawd!!
So... I feel more "together" during the day now and yesterday... but honestly could sleep for hours. The good news is that over the weekend I would sleep and NOT feel rested... now I sleep and nap and actually FEEL rested when I wake up. That's always a plus!

So - there you have it, what it's like to be on chemo for the first time...
Sleep, feel horrible, sleep, feel horrible, start to come out of the yuckies slowly... sleep some more.... sleep some more... and hopefully by the time I start this all over again I will be used to the drill and just know to sleep when I need to sleep and do what I gotta do.

Work is understanding to some degree in that I telework. I get up at 7am - literally roll out of bed and sign into the computer - jammies and all. I get coffee at some point. HOWEVER that is another thing... coffee and I are not on speaking terms right now... could NOT stomach it over the weekend. I did tea and toast all weekend. And Ritz crackers. They were welcomed. And room temperature water. Really - straight out of the garage so barely room temperature - more like luke warm. But, hey, it worked for me. Hydration is a thing... something I have a harder time keeping up on - so far no liquids have been needed, so I think I'm riding a fine line. Not quite at dehydrated, but feeling a bit dehydrated.

So, that is the update for now. Not all roses and pretty things, but not all doom and gloom either.
Trying not to sugar coat it and say I'm fine... but when I think about what could be, when I see the folks in the cancer center in wheel chairs and I'm up and walking and driving myself to treatments, I feel very lucky to be where I am, and as healthy as I am through this. It's not a walk in the park, but it's not super horrible.

What I'm honestly dreading more than anything is the reversal and incontinence. I'm not sure I'm ready for that. I mean I know I'll do what I need to, but I dread it.

Friday, September 22, 2017

Disconnect Day


The needle that was shoved in my chest. Ok so not really IN my chest but in the port in my chest then taped down.
The small hole below the white tape (its over my incision) is where the needle was poked into the port.

The small bandage above is where they accessed the jugular. And yes, you can feel the tube through the skin.

A little orange/green from bruising but not as bad as I anticipated.
The skin irritation from the medical dermabond tapes. 🙁. Poor skin!

We'll use some of the barrier seal like I use on my tummy next time.

And there ya have it. More to come when steri-strips come off :)
Weird stretching due to the new tunnel. Hopefully that will not stay that way 😳. If so then so be it.

Thursday, September 21, 2017

I'm fine. I'm great.

So I was told I sugar coat too much. I appear fine in Facebook. But who wants to hear the truth?


Not very many. But my updates and comments to bosses are becoming more real lately.

And yes folks I'm in Jammie's at 8:30 and in bed. I telework because I'm just sitting at home anyway. I feel meh but I'm just sitting there anyway. May as well work so I will put in 4 hours teleworking.

It's not all it's cracked up to be, this teleworking thing. Your coworkers treat you like you are not in charge anymore because you're NOT there. They don't communicate to you like you wish they would. It sucks to try to lead system from afar.

While working there are always few dashes away from the computer as Chemo does a digestive number. Wow! For once glad I have a bag!!

I have a little cold sensitivity - moved to room temp items and avoided the fridge (hope that's short lived).

I've had a few super hot flashes and my day is just about complete with an emergency clean up in the kitchen isle (and a quick rinse off) I had finished work already so no hurry there to get cleaned and back at it.

Yeah this stuff is quite an adventure. Honestly the only add on is the hot flashes and cold sensitivity. The rest was already there and being adapted to somewhat (unhappily). It's a bit more in an uproar after Chemo. Hopefully it will chill between treatments. That would be nice.

The good news is the cold sensitivity should dissipate over time. Two/three days. Hopefully the bowel stuff that was settling prior will settle again as well. I just repeat over and over "5 more treatments, 5 more treatments". That and I'm fine. Really. It's all good. It's a smaller price than some pay. So I will take it like a woman (a woman in hard labor - ha!).

It's worth it in the end!! Pun intended.

Oh and 3x a night wake up is not uncommon for bag stuff (2nd ballon experience, however not as dramatically full as the first). 1x in the middle is considered a great night!! I had a great night last night 🙂 now to get my "skills down to a 2 minute dump and run" instead of 10 minutes and I'll be super jazzed!!

Wednesday, September 20, 2017

First chemo day.

8:00 arrive cancer center
8:15 called back to check in
8:20 see Dr Sumrall

Was told the first few weeks are unique as I will be back next week as a precaution to just lay eyes on me and make sure all is well.

Oh one MORE clarification - SIX treatments only so not a full three months. Six treatments. However they fall on the calendar and depending on delays could be over quickly.

8:30 into chemo area to get blood draws
And we wait.


We wait for blood draw results. Once results are back as being good we proceed with chemo. THEN it's two hours to get the infusion.

So found out these two visits typically go the opposite. It will in the future be go into chemo area, get blood draws then wait for doc to see you THEN back to the room to get treatment as blood work will generally be done by then. So next time they will be flip flopped.

9:15 still waiting!


I got up got my blanket and pillow to chill out. Took the picture, sent it in a text to a friend.

9:16 no joke as soon as I sent something to a friend she came out and brought a new pole with two pumps 😳
Meds in board for for nausea and now another drug that I didn't catch what it does. But it's NOT the chemo. It will pump in over 30 minutes. Yeah this really is an all day event isn't it?
It's now 9:25am


And then I look around and I'm the youngest person in the whole 20 chair room. All the rest of the folks are 65+ (being generous here). Really? Didn't expect that!! I think I'm more in par with the nurses age than the patients.

Someone else who is younger is now in here!! She's I. Her phone as well.

9:54 chemo started.


Mind freaking out now. Two bags. One is supportive fluids that help the chemo work. One is the Oxaliplatin - aka the horrible chemo. And so it begins.

10:08 young girl gone now :( back to being the youngest.
10:30 man about my age now here with his wife. No port... fighting over a good vein. Poor guy.


Had to let Peggy know her poop emoji pillow has gone on ALL my adventures. She was even in the operating room with me for my port. 😄 love my 💩 pillow!!

11:52 last IV pump done!! Now for the take home pump.
And Liz just called to see if I wanted company. Sure. Come on down!!

While she was there they hooked up my pump to take home with me. I didn't take pictures while at the center because Liz was there.

They put me in a smaller pack. I chuckled. Yeah. I'm NOT petite. Never have been, never will be. So here is the pack in all its glory


A bag of chemo at the bottom and the pump on the top. It will count down the liquid as it goes. I will have it on until Friday at 10am.


It's in a lovely black fanny pack. Stylish, don't you think??

I thought I had escaped cold sensitivities but. Yeah. Nope. Had tingling in my mouth when I drank and thought nothing of it. Then even with ice removed from the drink the last time I sipped it was ice chunk feeling in my throat. Ooh yuck. That and nothing tastes quite right drink wise. Mostly food tastes good. I had Zaxbys for lunch (kids meal) it was tasty. Had t had it in a while.

Getting a LOT of burbles from Audrey today. She's not happy. Sigh. And so it begins.

Noted in the office:


I have come to the conclusion I live in the 😳 portion (4 or 5). There's always something poking aching and or bugging me. But as that's my new normal, I choose to slide the scale. My 😄 shall be a 4 or 5 and 😳 medium shall be at 7 or 8. That's life. No since in crying over it

Tuesday, September 19, 2017

Port

Today is port day.
7:45 Go to hospital
8:00 Check in
8:15 Go to lab - get labs drawn
8:20 Go to waiting room .... wait


8:30 check into Interventional Radiation to get settled. Visit with the SUPER chatty nurse. She was sweet. I told her I wanted to watch. Not possible. No pictures of procedure either.


BUT she had a guide wire that she showed me. This was put in my jugular to guide the port tube. Thick, eh??

She described the process. A slice at the neck to access the jugular and place the tube in that will be connected to the port. Then create a small pocket for the actual port and burrow a tunnel under the skin and the two places are joined. I don't know if the place the port then burrow the hole and pull the tube through or put it in the vein first then connect it to the port. I suspect the latter as they did show me the port and there was no tube connected.

Anyway. There was a lot of waiting while they were waiting for my blood work. Blood work finally came back at 9:30 and I was pushed across the hospital to "the" room as I waited in the hall....


Looking at the door.


My thoughts on being in the hall waiting!! Ha! Looking lovely in my hat 😳

Then the pictures stop. It was a operating room with an X-ray or fluoroscope or something to track where they were placing the end of the tube. The end of the port is placed close to the heart. Lots of screens and such.

I was moved over to the smaller table and arm holders were put in place - like little half round plexiglass that keep your arms from falling down. (those are nice options on a thin table) I was hooked up to IVs and drugs were started to take the edge off. Ahhh drugs. Ha!

I was then draped and the drape was stuck to me and there I was facing left and looking a blue drape and not a lot else. I could see to the top where the IV pole was so it wasn't closed off and the nurse could poke her head in. Agatha was her name.

And I waited again for the doc. I never even MET the doc. He didn't even put his face down where I could see him. Apparently I was quite chatty and he had them bump the drugs and that was that. I was zonked!!

I woke to the nurse or the assistant stitching me up. All dissolvable stitches so I don't have to go back to see them AND per the request of the cancer center they left the needle in so I won't have to be stuck again for my infusion tomorrow.


The green is the needle access for tomorrow. The bandaid is where they accessed the vein. Pretty sure that will be a huge bruise below the bandaid.



All smiles because I'm still numb as 💩 and I have my poop to keep me company 😄


And we're home! Now to relax and chill for the day.

Oh and the IV stick was horrible. She didn't get it in the arm. She missed and I have GREAT veins on the side she tried. Then she tried in my hand and it was iffy if she got it or not, but it worked. Good enough. Worst IV I've gotten in a while. Did I say I'll be happy with a port as I won't have to worry about inept sticks for a while!!

It's tiny. Like quarter size and about 1/2" thick. It was much smaller than I was anticipated!! Nice!!