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


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!!

Saturday, September 16, 2017

Optifast (?) week 12 and chemo update

Ok I'm going to have to drop the Optifast title because I'm a slacker and have not been doing Optifast lately. I have tried to do two to three of the shakes for nutrition but honestly food and I are no longer having a relationship. We've broken up. It's just not a priority or a draw. I get fuller faster and eat a lot less now. It's weird.

I'm not losing like I was with Optifast BUT I'm reporting every week and I probably shouldn't. If I weigh every day I'm surprised how my weight fluctuates - up to three pounds at a time. I went to the cancer clinic and it was three pounds more than what I weighed at home the day prior.

So. I'm close to 50 lbs down still....the right downward trend.

I'm tracking my food on My Fitness Pal and thinking of getting the premium to show better suggestions on what I need to add to be more healthy and balanced.

But here it is as if today:

That big bump is the lovely hernia and the bag. Fingers are resting around the hernia. Sigh. This will get fixed in 4 or so months.

Three months of chemo and one month healing time then surgery to reverse. So thinking if it's like my first surgery it would be a 6 week wait or so to get in.

And so I march on!

Chemo. I had my education on Friday (15th) they told me pretty much told me what I know already about from my groups and having three months to research and talk with folks. Nothing shocking.

Well I take that back they said I would START chemo the very next day. Yeah, you read that right. I will start chemo on the 20th bright and early. Ummmmm. Ok. AND they said when I get my port put in I should tell them to leave the needle in.

Uhm say what??? Yeah, leave the needle in that they will be using to flush the line the first time. Why you ask (cause I know I did)?? Well, I will be sore and stiff and they said rather the poking me again I should have them leave it in and avoid the stick. Smart move!! Ok need to remember that.

And so the journey will begin.

While I'm here gotta say a few things. I am not gonna sugar coating things here. I had the nurse ask me Friday when I explained I was still supposed to be on the Optifast diet and have very liquid output at most time. She asked me why (not the first nurse to ask this). What on earth do you want me to say? I've gotten to the point of saying "because I'm fat". I mean duh. You can see that. Sigh.

Also someone said "oh it must be nice to be back to normal". Hum. Yeah. I'm so far from normal. I always say "I'm fine" which all things considered, I AM fine.

I could be worse. But normal? Uh, nope. I poop myself daily even though I have a stoma. I have a poop bag in the front but what they (docs) don't tell you is some folks have mucus pass through the nether region as well.

As it is I'm lucky in that my colon work super well. But I'm unlucky that my colon works super well and I'm the mucus queen. To the point of "pooping" myself. I wear a pad daily and see diapers in my future. No really. I'm going to have to retrain my bowels. If I'm lucky it will go quickly and things will solidify and I'll get control easily. Either way there will be pads in my future for some time as I have Read that accidents WILL happen.. for a while.

So when I say "fine" it's just that I know you don't wanna know. Not really. It's gonna be a long road back and I may never get there and, that's OK too. Not ideal, but it's fine. I'll deal with it. I may whine, but hopefully I'll just laugh about it and move on. The reality is I'm shopping diapers at Sams and happy to announce they have what i will need if things don't go as well as I hope ;)

But yeah, I'm fine.