Monday, September 27, 2010

No Whining

Sorry it's been a while. But I'm sure you understand.
I've been slowly recovering. Sleeping is especially hard. Our neighbor lady made some homemade chicken and noodles soup and I think Weds, Thurs, Fri- I'd eaten about 5 noodles each day and that was it. My appetite isn't back. I'm not excited for it to be, but I'd like it to be more than what it is now. Carnation Instant Breakfast is my friend for now. I haven't weighed myself to see what I've lost. I think I'd just be disappointed.

Well, if you didn't know by now- I did not get the chemo wash. From what I understand, Dr Sardi debulked a lot of the cancer- resected a few pieces of my small intestine, took out my gall bladder, fixed a hernia and repaired my stomach which was twisted and full of adhesions from the previous pointless chemo washes. I still got sliced and diced: Pubic bone to cleavage- SEXAY! AND- I don't have a bellybutton anymore. Not like I needed one I guess. But now my stomach is Ugly AND weird as hell. I guess I can win some bar bets now though. Woot!

I was discharged on Tuesday. I was nervous as hell to leave. Cold sweats and I think I had an anxiety attack. I'm not proud. Quite ashamed actually. Look, I've dealt with an ilias or HAD an ilias or gotten one or however the hell you put it in a sentence... Before. I was NOT ready to deal with one again. I will NEVER be ready for one of those again. I was with my sister-in-law, Inga, when I left. We got a hotel room across the street from Mercy. My Dad got there around 8. The evening was and is a blur to me. I just know that poor Inga had to play nurse-maid to me as I whined and cried. She was just lucky that in between that, I was sleeping. We left around 11am. Got home around 5pm and got to see my babies around 8.

I should get my 87 staples out this week. I will *sigh* resume chemotherapy in a few weeks since the cancer is now in most of the lymph nodes in my abdomen.
Can't win 'em all, right?

Tuesday, September 21, 2010

A book?

I think I will, one day, turn this into a book. Because my life is an open book, my life is a soap opera and my life is a Lifetime TV Drama. So Really-why not?

Today brought a new nurse. Cheerier at least but I was hesitant to ask for pain meds. She started asking me if I wanted them. I talked to her about the previous 24 hours and she seemed to get it and not be so anti-rachel. I've meen getting what I need- so for the time, I'm over the other crap because I have other crap to worry about. Not a couple of nosy, judgmental nurses.

I got up and walked at 7am. Was hurting at the time, but I needed to get out and walk. Did a big lap. The physical therapist showed at 9am and I walked again, did some exercises- they felt easy to do... even hurting a bit. I don't know how that works.
I took a shower. Yes, TOOK A SHOWER. ahhhhhhh. But of course, that's when Dr. Sardi came in to talk to me. He said he'd come back but I didn't see him again today. he must've been busy, because he's good to his word. After the shower, the physical therapist showed for more walking and more exercises. Just after that my sister in law called to say she was about 25 miles outside Baltimore. Dad ended up meeting her at the Hope Lodge and having her follow him back here. I THOUGHT I'd get a nap while they were gone.
Anything BUT. The occupational therapist showed up. She was nice but very talky. I didn't want to seem irritated so every time she got off track with stories, I'd just say, ooooh, what's next? I was exhausted! I really just wanted to sleep. By the time she was done with me, I just wanted to lay down... but the nurse tech came in to do vitals. about 10 minutes after she was done.. in come Dad and Inga. No sleep for me. Dad had to leave so he could get home while there was still daylight.. I think he turns into a princess, no, a Harley Rider- at Dusk.. whatever. Har, har.
Then I was Great Company because I was tired and sore. I think I slept a bunch after Inga (sister-in-law) got here. Luckily she was really wanting to read some Reader's Digests. She had plenty of time to do it. Right now we're having tea and sweets. Already walked twice and got "the question" anwsered with a yes. Things look like I'll leave Wednesday. Hooray!

Tonight- things are good. I'll leave it there. That full moon can be pretty strange.

Monday, September 20, 2010

Insult to Injury

I am having a bad day. Or night. Whatver.
I had been doing very well with walking and getting around. It took a lot of pain medication to get that done. I was in a LOT of pain after surgery, the little ball of abdominal pain meds and the pump weren't doing it for me. If I asked for more medication the first reaction was "Did you hit (or have you been hitting) your pain pump?" Umm-yes- that's why I am asking for more. It took 2 days a total bitch nurse and a very understanding Nurse Assistant to finally get my pain under control. I think there was some difficulty because I had been taking painkiller before I had the surgery and possibly gotten a tolerance to it. I was in pain around my stomach area.
That sucks- but it didn't take away from the fact that I was still hurting BAD after surgery NOW.
So we figured it out, so it was taken care of, I was getting up and walking and doing weights with the OT.
I was getting 2 doses of the something extra every 2 hours. Was doing great until late morning when my nurse said he was sorried about me becoming addicted to the pain meds and it was his job as a nurse to try to keep that from happening. Okay- I totally understand that and I respect it. I said "Contact my Dr's line for the weekend and let's see if we can get a different drug for the same purpose." I didn't have a problem with that. I thought we could get some pills since Dr.Sardi said I could do solids. The dosage was 4mg every 4 hours, but we had broken it down to 2 mg every 2 hours- my nurse wanted to try the 4 mg and go 4 hours. Personally- I didn't want to have a major high and a major low and wait, in pain for the 4 hours to be up. I thought maybe trying 1mg every 2 hours and wait to see what the Physician's Assistant said. In the meantime my sister had asked for a neti pot because I had been trying to blow my nose- but to do that hurts like hell after surgery (note the time-2pm) asked for it again an hour later. We were told that it would have to be perscribed by the PA, he hadn't called her yet. I had gotten the 1mg dose at 1pm and 3pm. My siser and mother left about 3:15.
5:00 rolls around- I would be getting another dose (1mg) I'm feeling especially sore. 5:20 my nurse comes in and says "Oh, I'll come right back with your dose." I say, "Okay- could you please bring the saline nose wash when you get a chance?".
6:20 comes around. My nurse says "Well the pharmacy is backed up so it will be a while." Okay- could you get the neti pot in the meantime please?" he said that he was the charge nurse all day and had forgotten about it. I totally understand if that is actually the case. But it didn't seem like the case. it seemed to me that he was ignoring me and NOT getting the things I asked for because of the "We think she's getting addicted- she doesn't need these drugs. We don't like her." I felt like he he hated me and wasn't going to help me and was just waiting till shift change at 7:30 to dump me off on someone else.
I finally got up the nerve to contact the PA on duty. they paged her and said that if she doesn't call me, to call them back and they would page agaiin.
I had waited to go to the bathroom because I was sore and had been going for walks and bathroom after the breakthrough drug because it hurt a LOT less to do it. At 6:40 I still hadn't gotten the 5:00 dose. I really had to go at this point, so I go the bathroom, I will give you one guess as to who shows up at the door with a syringe since I'm not out there to get it... Oh, he'll be right back with the dose when I'm done in the bathroom....I'm done right away- fifteen minutes later- he shows up with it. Gee thanks.
I called the answering service again and it paged the PA again. She called me, I just missed the call so I called her back- I told her that I was upset (at this point, I was in tears and you know- it hurts like hell to cry after abdominal surgery) and asked her first if my nurse had contacted her at all today. "No, no one has called about you."
WTH? He said at NOON that he would contact her! So I told her about the whole situation. But I didn't want her calling the nurses and addressing it because I don't need a whole floor of nurses HATING me. I knew if she took it up with my nurse NOW that he would just tell the next nurse that I was a dumb bitch and so on.
Well, she called them and talked to them- reassigned my dose to 1-2mg every 2-3 hours. I was talking to her (it was 6:55) when he came in and haded me saline nasal spray. "Have a good evening" he says.

I don't think I'll take any more pain medication through a syringe, I don't even know if I will do pills. I'll suck it up. My stomach hurts- but I'll stick with my pain pump that I can't tell is even doing anything.
When anyone asks- my pain level is 3-5, no higher even if it is MORE.
Oh and to prove I'm evidently disliked- my nurse from Friday night and Saturday night had an issue with the doseage on Friday night was was giving me doseage Saturday night without issue. Okay, that's fine, well at the end of her shift this morning, I asked her if she worked again tonight. She said, "No not until Monday." Guess who was sitting at the nurse's desk a couple of hours ago?
Okay-maybe she got called in.

So I had to go to the nurse's desk to ask for a dumb favor. I am feeling a cold sore coming on...
The LAST friggin' thing I need is a damned COLD SORE!!!
I have to be MORE of a pain their asses but I need some Valtrex.. like right now. It was 1:30am and they've gotta wake the PA to get her to perscribe it for me. Great- now everybody hates me. Everyone except the Nurse's Aid that did some braid cornrows in my hair for fun last night. She was genuinely nice and sweet. But I don't think she's heard the "Story about me."
So I have taken Valtrex and will try not to add more insult to injury. Waiting on this bad mamma-jamma of a cold sore to take over my face. Good times.

edit: The nurse also told the PA that he'd never mentioned me becoming dependent/addicted to the drug. It must have been a miscommunication.
and my overnight nurse was here as little as possible, not very talkitive and though I would've said "No" to any more breakthrough drugs if she'd offered- she didn't offer once. My PCA pump ran out at 6am- that means I was only getting the painkiller in my stomach- I was HURTING. I thought I'd see if she'd offer anything more than what I had. She asked me my pain level "Seven or eight" I said. She said "Oh, ok."

I must be Blacklisted on the 7th Floor. I am going to be a good girl until I leave because it just gets passed along about "The girl in room Blah, blah, blah." Being a drug-seeking, demanding, will tell on you to the PA- patient. and I don't need any more people NOT on my side.

Ohio University Medical Center had a crappy surgeon- well, let me rephrase that: OSU Medical Center- The James- Had a Surgeon who was good at surgery- but not good at sharing or learning information to send patients where they REALLY need to go. And had a Crap personality. But the Nursing Staff there was TOP NOTCH. I sit here and WISH, WISH, WISH, I was recovering on the 9th floor of Doan Hall.

Here- Dr Sardi is top notch- and I believe he has a good team with him. But the nursing staff is less than great. A few are wonderful- but I would really love to take a walk around the floor for exercise with my ass hanging out so the crap nurses can kiss it.

Saturday, September 18, 2010

My mistake

Talked to Dr. Sardi again today (imagine that- a doctor that comes in on the weekend after a MAJOR surgery)
Anyway- here's the lowdown: He removed my gall bladder. He removed all the cancer that he could. That means he didn't remove everything. There is evidently cancer in a lot of the lymph nodes throughout my abdomen. There is a lot of it behind my liver, but so far my pancreas is okay.
He didn't do the chemo wash because he he doesn't think it does any good unless ALL the cancer is remove.
I misunderstood about my stomach- I guess my stomach had a lot of adhesions on the lining from the previous 2 IPHP surgeries. THANKS AGAIN Dr. Arnold.

As of right now- they are looking into what chemos will work on this cancer. That is basically the last resort.
I'll hold on to the little piece of good news that there is no colostomy bag. Yay

Friday, September 17, 2010

On the other side of it.

Well folks- I see my husband did some updates during the surgery. He didn't really give the entire story.
Good News- he removed a lot of cancer, not a bunch was among my intestines- so no colostomy bag. From what I could comprehend- my stomach was a mess. The lining was all cancerousTurned onto itself and Dr. Sardi says he was suprised I could eat.
However, he couldn't remove all the cancer and did not do the wash because it is in my lymph nodes around my liver...

The only way to go from here is to find out if this cancer responds to a new chemotherapy and get to it.

I've been up to walk already. Dealt with an unfriendly nurse- cried from the pain of docs pulling off dressing. I have 87 staples from my pelvis to above my sternum. It's a real beauty.

I am at a standstill. I was really hoping that this would be the last of it. Onward I go. Damnit

Thursday, September 16, 2010

On the other side.

I'm done with the damnedable bowel prep. I should NOT have had that crabcake earlier today, but I'm IN BALTIMORE- Hello!
It doesn't matter now. I can't have any thing to eat or drink now.
I called my mother-in-law so I could talk to my girls- Vera was already asleep. Iris was still up. "Are you in the hospital?" -"yes"- "Can I talk to Dr. Sardi?" -"I'm sure he's in bed."- "Oh."
She is really wanting to talk to him. He will probably talk to her when she gets here. I hope so.
THE hardest thing about this whole deal is having to leave my girls. I don't think there is anything I hate more than saying goodbye to them.
I am anxious to be on the other side of this. Pronto.
I hope God, Dr. Sardi and his team can work wonders and are at the top of their game.
So until next time, my friends, take care. Updates at Caring Bridge if you want them. I just want to hold my babies as soon as possible.

I love you Iris and Vera- you are my life. I do all this for you both.
Kisses and Sqeezes,

Tuesday, September 14, 2010

I'm here...

Just waiting I guess...
I don't think I'll be sleeping easy tonight. I feel fat as hell, I am waiting to shave my legs tomorrow- get all gussied up just so they can look at my worst feature... my fat belly and my cancerous insides. I'd much prefer they would have a gander at my boobs,legs or eyes (the body parts I actually get compliments on) I wanna see just how nice Dr. Sardi is--- if he gives me a little tuck while I'm out. It's only humane to give a fat girl a little help in the flat stomach department when you're already gonna be slicing and dicing that area anyway.

Tomorrow I check in at 9am to get poked and prodded- WHILE I'M AWAKE- and answer a million questions I think. Just pre-op fun..Please don't weigh me, please don't weigh me, please don't weigh me....
We brought "Yahtzee", "Pass the Pig" and a puzzle. that won't be enough- so I will have my handy-dandy.... Notebook! (Thanks Blue!) I guess I'll be playing the hell outta some online games.
The Hope Lodge is nice... but I'm glad I'll only be here for one night and won't be here for the checkout. THAT would require cleaning and I don't think I'll be down for that.
So.... Lucky YOU! You will get One More update from me tomorrow night before 'Go Time' once again. Then it's off to the Caring Bridge site for you when you want updates. My sister AND husband have the info... but nowhere near the amount of gleaming, fluffy charisma that I've got. har har. I kid. I appreciate them doing it for me while I can't.
Off to "LaLa Land for me"... probably in a couple of hours.

Sunday, September 12, 2010

Sleepless in Belpre

Only less sappy I think, than the Meg Ryan/Tom Hanks movie...
naturally I haven't had a decent night's sleep since diagnosis- and maybe even before. I DID have a 5 month old baby and a 2-1/2 year old- so my sleep was kinda like a bad pizza: at least it was sleep of SOME sort.
Lately, I'd say the last few weeks, I just can not manage to get to sleep at night. Afternoon naps- no problem. I can fall asleep like I did in boot camp- anywhere! But at night...... I just can't. now I know what you're thinking, I've got my days and nights mixed up and if I didn't take a nap in the afternoon, I wouldn't have any poblem when it was actually bedtime. I've tried that too and it doesn't work. i'm kinda glad that THAT isn't the problem because I like my afternoon naps with Iris. Milk and cookies for the bribe then plenty of snuggling. I dig it, and I tell her that every day.
I know it's because of the stress. duh. I just can't figure out how to manage it correctly. I can't go to sleep at 9pm through the week so I can get the required 8 hours of sleep. I just don't go to bed at 9. I don't think I've done that since I was 11.
I guess it's not a big deal now since I've worked my last day for a while and won't be needing to get up at the buttcrack of before dawn. Now I can stay up that late- har har.

So I will add that to my whine list... along with my soreness and 'bloating'. Is it called bloating? You know? When your abdomen is swollen so much that you look pregnant again? Well, I look like I'm about 4-5 months pregnant, fantastic. Hopefully that crash diet I'll go on in 5 days will help me out a bit in that department. I am also sore and stiff in my midsection... is it in my head? The closer I get to surgery day, the worse I FEEL- PHYSICALLY. And I'm still nauseous and wah, wah, wah.
Should I revel in it? You know? Because I will miss it when I'm better? ha ha.
So at the times I do feel good, I'm soaking up all the normal I can get. Trying not to freak out about what lies ahead. Someone asked me if I was ready for the surgery. "Nope. Not at all." I thought for a second. So I compared it to giving birth; You look forward to the end result- but you've gotta go through some unpleasantries to get there. Unpleasantries, if I spelled it right, MAY be an understatement. Yes, I think it is. You get the idea though.
Soon this will all be a memory and I will need to focus on more important things- like what my Halloween costume will be and what candy to buy for trick-or-treat.

At the request of a few people I have set up a Caring Bridge website for surgery updates and post-op notes until I am coherent enough to tell you in my own words.

It should be set up so that you can make comments and such without a huge production of giving your name, social security number, first born, father's Aunt's Maiden name and your college roommate's hometown or soemthing like that. Should be a fairly easy process if you want to leave a comment. My sister said she would update as much as I wanted her to. I told her that I have rabid readers and that she should be updating the page any time she is updated. I was told that a nurse will update the family every 2 hours or so, SO that is probably what you'll get.
Enjoy... I'll bet it's riveting! So riveting, in fact, that it will put me out...

Sunday, September 5, 2010


While planning for Labor Day weekend activities I started thinking about the people in my life who have faded away since diagnosis.
I found it funny, the sheer number of people who came out of the woodwork of my past, once word got around. I giggle about being the "Cancer Friend" and that some were simply being looky-loos.

It doesn't bother me. It DID. But I have gotten to the mindset that any publicity for cancer awareness is good publicity. WHO KNEW there was such thing as "Appendix Cancer?" Now more do than did 18 months ago, right? (can't they just take that out?)

I won't say I'm CRAZY about the idea of people who have REALLY done me wrong being able to just drop in and know about my situation so intimately (yep- even cancer patients have people they don't like... even before they have doctors they don't like.), but it comes with having a blog publicly accessible so others may read and actually GET something from it if they need to. I am honored that I could help educate anyone about what goes on in one person's mind when dealing with cancer. I hope someone can learn what NOT to do, what TO do when jumping through treatment hoops- what to do/what not to do when TALKING to someone with cancer and whatever else might help anyone in any position on the cancer spectrum... be it newly diagnosed, a long time survivor, a loved one or a friend that wants to reach out.
And if that means my blog is read by people I lack a fondness for in the process- so be it. I can think of a few people I don't think have a right to know about me and my situation but I am not SO bitter that I would delete a blog just so those select few couldn't read it.
I started this blog basically as a way to vent and to chronicle my experience for myself and possibly my daughters. Then it kinda turned into a reference point for those I didn't talk to on a regular basis... distant friends who wanted to stay in the loop. I started boring myself repeating the some story over and over again. I had little idea I would make friends from this. No idea that what I put out there would be found interesting at all by anyone who didn't know me personally. I keep running into people in my community who have somehow found my blog. Sometimes it's hard to believe the 2 worlds ever collide= the internet and the Mid-Ohio-Valley. It almost seems I'm better known for my blog than I am for being on the radio for the last 8 years. I get embarrassed... um, because I can cuss here, not so much on the public airwaves and a lot of people I know aren't so crazy about my colorful metaphors. When I found out that my aunt had the address for the blog published in her CHURCH'S newsletter- I almost peed my pants. WHAT?!?! Yeah- she did.
It's not like Sheboygan Dan linking here from his blog... I was thinking it would be like bringing Andrew Dice Clay in for a sermon.

Hey, I don't cuss THAT much- do I? It just happened to be right after one of my more "colorful" blogs where I was having chemo and feeling sorry for myself. Not the best time to send a congregation here.

Hm. See how this works? I totally didn't mean to go in this direction, but there it is. And thanks to chemo brain- I don't even remember what I had meant to talk about when I fired this baby up and signed in. Maybe that's a good thing.