WARNING: Some of the Content here may be Objectionable to some. I have this blog labeled as "Adult Only" as a common courtesy for those who may easily be offended by Adult topics such as the Truth, Down to Earth topics, realities of living with Ovarian Cancer and/or any life threatening disease that goes along with it; Sexuality, Medicinal Cannabis, Profanity, and of course plenty of unpleasant body functions are also discussed here. This is a very tough battle for which I don't intend to hold anything back on what I am facing.

This blog is very personal and comes from the heart of a real fighting cancer patient who wishes nothing more than to live for all of those I love my own will to live, and my love of life. While sometimes I might be on heavy medication (prescribed by my doctor) and occasionally I might write about things or subjects that one may never even think about or consider; so please consider that as well. Yes; whacked out things might even be found here; but I mean everything in all good intentions.

This blog is not at all intended for the faint hearted, those who lack a sense of humor, have no idea what down to earth means, greedy mean people, and/or those who don't know how to share the world with others, and especially those who are unable to easily put themselves into the shoes of others. This blog is mostly about my journey of living my life in the best ways that I can under the Golden Rule and appreciating all of the GOOD KHARMA that comes my way! Never take anything in this world for granted; especially family and friends!

Saturday, April 25, 2009

1st Day at home again....

It was so awesome to sleep in my own bed last night. I had such a good night's sleep and to be home again! I love it and hope I don't have to go back to the hospital anytime soon!

This morning my honey had the alarm clock set for 7am this morning so that he could flush my picc line (red one for drawing blood); this is very, very important to do twice a day so that the vein doesn't close up. He also put that special creme to numb the area where he was to give the shot, then he changed the dressing on my abdomen and cleaned the area very good; he was so amazing to make sure that he washed his hands, changed his gloves several times, swabbed the picc line before inserting the saline solution and then about 20 minutes later that dreaded shot. He warmed up the shot (it has to be refrigerated) and it didn't hurt! Wow!)

We both went back to sleep and I had some strange dreams. Blue Belle had more puppies; I keep having that dream for some reason; she's spayed already!? I think it must have been the Percoset I took prior to getting started and getting that shot. I was having the worst hunger pains and my tummy was cramping so horribly. It was making the most awful noises; it must have been the Sugar Free Jell-O which I plan to discontinue for at least a couple more days.

It kind of sucks to have to be plugged into a back pack all day but I am slowly getting used to it. I've forgotten twice that I was plugged in and almost made the mistake of walking away from it and my honey caught me both times. He yelled just in time both times. I still can't get over how wonderful he has been taking care of me that I just had to make him breakfast this morning. He has been craving my specially made breakfast for weeks; haven't been able to and I now have the energy to and I did. He loved it and I loved doing it for him.

The nurse from early yesterday called to find out what time she needed to come over; apparently we should have nurse come over this evening at around 7pm-ish to help with the food bag because it really is a complicated procedure. Just one more time and he has it. I think he already has it; just a little nervous about it all. Anyway I didn't quite understand why she needed to come over as the only thing she would do was check my vitals; what a waste. Anyway we will have a nurse stop by later on today. Here's to more healing!

UPDATE: We had the same nurse from earlier yesterday (one that called) and she came by and changed my picc line dressing again (wasn't changed correctly yesterday), she changed and measured the wound on my tummy and also we verified that I am allowed a few hours of freedom from the heavy backpack! I'm free right now and another nurse is coming at 6pm which only gives me an hour an half of not being hooked up! That's much better than none and I get to shower a little (can't get my back wet), but my honey is giving me a nice sponge bath and he's also washing my hair. How sexy is that? I don't have to smell and look like a dirt bag any longer! Awesome!)

Rest of UPDATE: When nurse that had called, actually stopped by. We really had no idea she was showing up. She apparently screwed up my picc line. She didn't have the proper kit yesterday when she showed up to change my picc line? Hello? I knew I didn't understand her wanting to change the picc line without the proper kit. I didn't like that she used gauze with that picc line kit. You must have the little Pac Man pad prior to changing a picc line and she didn't. I asked her, "since you are stopping by tomorrow why not change this tomorrow?" She told me that she did not have a choice (she absolutely had to do it) and I was not at all into her changing it with out the right kit, but "Sweet Jayne" I am; let her do it. I put up with the pain of having my skin yanked out twice (actually 3 times in one week). It only needs to be changed once a week? The kit and all the food stuff had not arrived yet and was due to arrive at 6pm yesterday and it did arrive then, but it was a half hour after this nurse left. The other nurse that arrived at 7pm could have easily changed that picc line. She did not absolutely have no choice with out the right kit. How wrong is that? Sometimes in life, you have to break rules and regulations to do the right thing. In this case; please save the poor patient some pain and suffering?

Nurse Aziza (she's done!) had arrived at 3pm yesterday and it was around until 5:15ish when she had to go. I had forgot to mention that my poor tired honey had fallen asleep (he's mad that I didn't wake him = I should have and I will next time). Learned my lesson!)

We are just realizing the mistakes this seemingly nice nurse had made even though she would not allow for me to skip the picc line change (it must be done once a week, it had been done properly on Monday, 4/20), OK, getting over it!

Well we had the most amazingly talented and most importantly experienced nurses come by this evening. My sweet honey had everything laid out perfectly (I'm so proud of him!) If you look closely; that round tin is my pizza pan (not using it at all this week!), with foil and a paper towel in which to organize; how cute he is!

This nurse was also impressed with his perfect organization skills, but she taught him and us the proper ways of doing that food tube thingy apparatus. She has over 15 years of experience working with these things and being a hospice nurse. (GOD I hope I don't need that anytime soon) I really do get 4 hours of freedom and this other nurse cheated me out of 6 hours of freedom as far as I am concerned, nurse Aziza (she's done = we don't want her anymore!) could have called the pharmacy yesterday to confirm that my bag was to be on for 20 hours (4 hours off = no heavy backpack = HELLO!). The apparatus alarms and then distributes more food, which is barely any (it's just about 1 - 2 tablespoons of food to last 4 hours) in case a patient forgets to turn it off and leaves the pack on there will be no bubbles in the line if it were to be programmed to shut off.

How would she feel having to carry that dumb thing around 24/7? That is the question that I really wish many nurses would at least think about. Please, think about the patient; not just the process.

I know for a fact she probably never thinks about those things; only shit on paper. No; she did not think about the patient, it was totally the liability. Covering her Ass is so much more important than any patient's life? Fuck the patient? I really don't feel that my life meant anything to this nurse. At least it seemed like it. I'm just a job? Only now do I think of all of her foolish dumb mistakes. She was doing everything possible by the book without listening to the patient and doing the extra work of calling to confirm things (just an extra step of calling to confirm the directions are correct!) People make mistakes, (even those who write out special directions!) but when doctors and nurses tell patients things, we kinda know something. I know I didn't write those things down, but chemo brain didn't kill everything that I was told!)

I did notice when nurse Aziza changed my picc line today, I had the most painful horrible tangled mess of gauze and sticky ass tape!(. I kept thinking as she was having such a time and it just kept getting tangled and mangled; I really wanted to tell "don't you wish you would have listened to me yesterday?". I didn't but I really wanted to. It sucked getting that off of me and she even had to use scissors to take it off. That was pretty dangerous but she had no other choice; she fucked up!) Now both my lines have this sticky nasty gauze and they look filthy all the the time. You just can't remove that sticky gauze and tape off those tubes and if those tubes are pulled it could easily cause havoc to my poor artery that goes to my heart. It could even yank it out of place. Hello delicate things here! She made an absolute mess and I warned her about not having the right kit while she was busy not paying attention to me and following strict paperwork. It hurt like hell getting all the tape off of me 2 days in a row. She returned to fix her mistake and nothing else. We are so mad about this but I promise I'm getting over it. What is wrong can be fixed; no more Aziza! She sucks! She for covering her ass! Not for the patient!

I really do love caring nurses; don't get me wrong, but when a nurse does this; it's inexcusable. I've been through a lot, to deny me freedom and to mess up my picc line over rules and regulations? Is it really too much to ask of some nurses to please listen to the patient; we say and feel quite a lot!) I know I do. I'm a very experienced patient.

The amazing nurse that came by this evening even showed that the other nurses didn't know how to properly plug in my food thingy apparatus. The apparatus has a box that looks a lot like a huge 80's style remote control and then another box thingy which is a back up battery for walking around and freedom!) In other words; I don't totally have to be plugged in. all the time. I can carry the backpack around with me until it's done (after 20 hours = 4 hours freedom) I was wondering why we were going through an 8V batter every day. It was absolutely ridiculous. I was so confused; "this apparatus sucks!" It wastes batteries and it has to be plugged in too? Well the back-up battery was not at all charged; they were plugging it the whole time to the DATA part which is never used? The back-up battery has this little hole and a red dot; you line the plug thingy with red dot and you connect the dots and then it plugs in!

After my food was hooked up, the very knowledgeable Marge? I think that's her name continued to help my honey with some more tips while I sat in the living room plugged in. The door knocked and my dear sweet neighbor Sharon brought over the most amazing gourmet style meal for my honey who so deserved it. I love to make sure that he is fed good and while I was in the hospital he had to fend for himself. I felt so bad for him. She had called earlier and I thought it was absolutely fantastic and sweet that she help me out this way. What an awesome friend and neighbor to have. How blessed am I? Normally I would have to run over to Janky Safeway (it's so ghetto there!) to get him a Marie Callendar's frozen meal. They are OK, but this really made it easy on me. He got a wonderful meal of Salmon, bow tie pasta with peas and some other veggies. I couldn't look at it too much but I'm so happy he was able to eat prior to going to see the Sharks stay in the play offs for now. (they beat Annaheim).

When my honey got home from watching the game, we talked about all the new things that we had learned and all the bad things that we were taught and had happened to me; I got to having more hunger pains. I jokingly told my husband; "do you think it would be so bad if I had two assholes? One in my belly button and one back there? If I have another surgery, I won't have a belly button and perhaps this fistula sore could be my new asshole. I already have 2 pee holes and wow! I get to stand up and sit down to pee?"

You know my pee bag is even situated nearly below my knee so does that mean I am in the gifted program since I kneel down a little empty the pee or pee? I guess looking at bright side of things it's kinda cool? OK that's a bad joke(s)!) We were certainly laughing; and at this silly little butthole that was staring at us from the cat tree. All I could see was this fat kitty butt and since this cat is tailless, he has this light hair that goes completely around his little butt hole. I'm so amazed at this cat's markings that sometimes it just makes me crack up. My honey went over and touched him and he totally stretched his whole body out while we cracked up some more!)

Well this stupid fistula thing is going to fix itself and my wound is getting smaller by the day but still has icky stuff on the dressing. It's actually closing up and is about a quarter the size that it was. It's just weird to think about the fecal matter that had appeared there just over a week ago. I was so hungry and still am and was just thinking about if I were to eat, what it would do my sore. No way! It just proves that our bodies are amazing and well mine does weird corky things that I can actually laugh and make jokes at!) Laughter really is the best medicine!)


Robbie said...

Thanks so much for your comments on my site. I do wish you all the best. And, yes, the pictures tell it all.

TC said...

So glad you are home where you can REALLY get some rest and get better. Do you suppose you dreamed Blue Belle was having puppies because of your hunger pains? Hope you get the nurses straightened out and they get their act together. My daughter is a nurse and I know she would be like telling you/or hubby to make sure only the GOOD nurses came. More later, have grandkids, watching wizard of oz.

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My techniques and treatments work simply for me and may not produce the same results for others. Cancer is a very tricky disease in which it is very different in everyone it touches. No two cancers are the same just as we humans are not the same. What works for me may not work for others.

I love life and expect to live for as long as I can. I intend to use those treatments that do work for me which includes medicinal cannabis. I'm still alive with this disease over 7 years later because of this miracle plant and as long as I have my medicine available; I intend to survive many more years. I hope one day the Federal Government will eventually grow up and be led by true leaders who represent the people and not just coorporations; real people who live by the Golden Rule "treat others how you would want to be treated". I also hope the Government of the US can finally learn to admit that it has made a mortal mistake in making this life saving plant which is provided by GOD and does indeed have the ability to provide all of us with food, fuel, clothing, shelter, and medicine; a mistake that have made is that it is illegal. Yes, it was a mistake out of greed, ignorance, and racism that this miracle plant is illegal. This is a confirmed fact and we should all know and face it.

Cannabis is not at all harmful and in fact quite the opposite. Perhaps our economy can once again grow as it has in the turn of the century by making this life saving plant legal once again.

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