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!

Tuesday, April 28, 2009

I can eat! No more shots & no more TPN!

My honey made me even more proud today more than ever when he called to complain about the one nurse who had messed my picc line, taught him incorrectly on how to power the TPN (Total Parenteral Nutrition), and she had also incorrectly bandaged my kidney tube dressing.

The way that nurse Aziza had bandaged my nephostomy tubedressing; the tubes were tangled and taped down and it was pulling and pinching me like crazy these last couple of days since she had changed the dressing. He doesn't put up with anything that is wrong for me or that he feels causes me harm. He will fight tooth and nail for me and I'm just amazed by it. It makes me all teary eyed sometimes at all the wonderful things he does for me and it makes me want to do all that I can for him as well. We have each other's back without a doubt.

Well back to the kidney pain; I could barely sit back all the way in a chair, lie down on my back completely, and I even had problems getting up off the couch because it just pinched and burned with pain.

We had a good nurse come in today to change that dressing and I can once again move! Check me out on the couch getting that dressing changed!) She was very gentle in removing the dressing and then she was also very careful about the placement of the tubes that came out of my back. She would adjust them and ask me to try to move around a little bit. We finally found the happy medium.

The TPN bag providers had also called to find out when they could deliver another week's worth of food bags. I wasn't too happy about this and we were confused about how long I actually needed to be on the bags.

Well that all changed when we called my doctor and left a message with him. He called me about an hour ago and told my honey that I wouldn't have to use the TPN tonight or get the shot! I felt like I had won the lottery. Here is a photo of me enjoying my first meal of the day! "Brown Cow Whole Milk Yogurt with the cream on top" it's fattening for most, but when you are 5-6 and half and weigh in at 110 then it's amazing!

I have to be careful (my honey spoke with a dietition just after he spoke with my doctor). I can't have anything high fiber; so just white bread (ick), white rice (sushi - but not for another couple of days), oatmeal, cream of chicken soup (yum), and only eat one thing at a time giving my tummy enough time to digest it. I just had the yogurt so I have to wait about 2 more hours until I can eat some soup.

I also have to make sure that I drink plenty of water (hello where is my joint?), yes, the cannabis will ensure that I get all those nasty tastes out of my mouth so that I can drink more water. Of course if I get to feeling sick then it will also help with that. I really love going the natural route with my illness; I'm not crazy at all about taking more Percocets which I did not know was actually Oxycodone that incredibly addictive drug that Rush Limbaugh was on. I still think the dude is crazy and his rants insane. I guess I don't like people who have to yell and remind us that everything is so terrible in life. It really isn't that bad and lighten up! I prefer those who are gentle, loving, those who inspire, who give us hope, and are nice to others; not completely and totally irritating.

When I first got out of the hospital, I needed those pills for pain (and I was having some bad pains), I was prescribed to take them every 4 hours, but I was only taking them every 6-7 hours, sometimes just twice or 3 times a day; if the pain was bad enough. After a few more days, it was once a day and today, I don't feel that need any more. I will just use what a good friend gave me months ago (cannabis). I'm so happy I get to eat!)

Most people really do take these little things in life for granted and for me they are just the miracles of life! We always tend to want more in life but I have what I need. I'm alive and I have found the love of my life!) We can get through more of these little interruptions as we continue to be strong together and to love our life together!) I feel complete with him no matter what the circumstances.

More Good News! My dad and my brother are both coming out to visit. Perhaps I can get both of them together on my birthday in June; we will see. My dad is planning to visit in the next week or so and my brother (my honey had me purchase his ticket = that was one of my birthday presents from him) is visiting me June 11th-16th. Although his flight on Thursday, arrives close to midnight, I could take him to the city for breakfast at Sparky's diner. I took him here in 1997 when he first came to California for the very first time. Evidently it was some night where all the drag queens in the city had been out clubbing. It was hillarious to see the look on my brother's face and then punk rock being blared on the speakers. What a stark reminder "welcome to San Francisco!". Once again it has been nearly 4 years since I saw him last (October 2005). That's too long for 2 close siblings to see each other. Although we do talk on the phone quite a bit; I sure miss him and am so excited for when he comes to visit! Here's to my health continuing to improve and that we don't hit any more snags along the way!)

Monday, April 27, 2009

I won an Award!

Well today started like any day that I'm counting down till I get to eat and to get rid of all these wires, tubes, bandages, shots, etc and so much more. We woke up late this morning but we did get everything completed by 8:30am instead of the 7am schedule. Our sleep patterns are a little off for now. We had phone calls about nurses coming by to draw blood.

Aziza called and my honey answered the phone and was totally straight up with her; he did not back down and told her exactly why he did not want over; she understood. Then another nurse called; he interviewed her and asked has she been in Mexico in the last week or month (swine flu). She had been just days ago; he told her "no" and that he wanted another nurse. We had another one call and he interviewed her as well. It was so cool to witness this loving man taking total care of me.

The nurse who had arrived was unable to get any blood drawn from my picc line and she did not have another back up kit, rather than her wasting a trip; my honey and I went to the lab. When we got there, we had to do the usual; grab a number and wait our turn; my honey was with me the entire time ensuring that I didn't touch a thing. He had my ID, Member Card, and blood order. No touching counters and he walked with me to the booth to get my blood drawn. He turned my seat around until I was comfortable and then massaged me because he knew how nervous I get with needles especially if veins are not easily found. It was a good thing that we came to the lab, because my favorite phlebotomist was working. She could find a vein almost effortlessly and painlessly on me everytime. I was stoked!

When I got home, I went to check my email and I found out that I got nominated for a Kreative Blogger Award by TC of the blog "Animals the Give Pause". I really like her blog because she often reflects on how special animals can be in our lives and their actual emotions, funny stories that prove that they are smart and they do have it together more than we think they do.

I am honored by this award and am glad that my blog is making a difference for some!) - Thanks TC!

To keep up this tradition, I am to tell you about seven of my favorite things.

1- My husband and soul mate Jimmy
2- My family and friends
3- My pets (they kinda get close up there with Jimmy)
4- Waking up each day to a new day
5- going snowboarding
6- going to the beach with my honey and Blue Belle to play frisbee
7- to be able to eat (that's my tummy talking - GOD I'm so freaking hungry- 4 more days!) - Normally it would be Random Acts of Kindness (I like that a lot!)

Now I have to pass the award on to seven of my blog friends. In no particular order, here are the seven! (copy and paste rocks!)

HarleyBlues2007- Sir Paul McCartney & the Beatles Guest Band Purple Melon

GoAskKatie - A Mix of serious & silly

AriaZink - Aria - the woman - the mom - the coffee junkie

LoriMents - lori-ments

DiaryofBreastCancer - the diary of breast cancer fighter

TheBreathingPost - A place to breathe about anything and everything

TheJuggleingHomeMaker - The Juggling Homemaker

Congratulations all of you! I have so many more I would like to list; but many I have listed before with other awards; wanted to give everyone a chance!

Gotta go hook up to the bag and get my icky shot! Honey is taking such great care of me and since the bag is so heavy when we first change it; he helps me to the bathroom by carrying it and I have to sit immobile for the first 5-6 hours. He makes extra sure I am comfy on the couch and I have total control of the remote!) How I love my honey and all of you who are praying and sending me those great healing vibes that I have been feeling lately!) At least I can get up and walk around and it won't be for too much longer; only a few more days!)

Sunday, April 26, 2009

A Day of Freedom....

I finally got an entire 4 hours of freedom today and how good it felt to be free. I got to go outside and take Miss Blue Belle out for a walk and romp with her best friend Tess. I got to see most of my neighbors in the complex as they were surprised to see me out walking about.

I even invented a new stylish accessory for any nephostomy bag!) I usually like to color coordinate all of my clothes that I wear; it's just a weird corky thing I do. My honey feels that I have an eye for fashion. My neighbors seemed to like my new fashion accessory and even laughed when I told them I didn't wish to show off my urine to whole wide world.

From now on; I will be taking out all of my chemo scarves and wearing them neatly tied around my leg to cover and/or decorate my nephostomy bag. How delightful this must look; a new style!) Perhaps others will want to do the same; nephostomy bags are now in fashion today!) Those who don't have them, can just pretend that they have them just like we did in the 80's over braces!)

Just 6 more weeks of this thing and 1 more week of this feeding tube stuff and heavy backpack and being plugged in all the time and the painful shot. I'm on the way to getting better; just counting down the days and enjoying them as much as I can in between!) I certainly did today. Those 4 free hours were fabulous!)

My sweet neighbor brought over pork roast? (I'm not too familiar with mammal meat), but it looked as if my honey totally enjoyed it and I am so happy that he was fed good this evening; I also made him a wonderful breakfast. Well he did a wonderful job taking care of me and he did all that he was supposed to do perfectly tonight! He passed the test and can continue to do the shots, change the dressing, flush the picc lines, and do the whole food bag (TPN?) process by himself. I'm so proud of him!) How I love that wonderful man of mine!)

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!)

All About Me...

Well I started this blog over a year ago (from time to time this page will need updating and I will certainly do so when I can!) and I never had any posts in this whole blog which told anyone all "About Me", just a link to my old website (it is no longer); so I might as well tell you a little bit about myself. Many of you already have read this story dozens of times and many of you have not. I thought I would update it just for my blog. It's old news, it might seem a little disorganized, but it's at least updated for now and I can use this in all links "About Me".

I am a 40 year old Advanced Ovarian cancer survivor who is very happily married to my very best friend and soul mate where we live in San Jose, CA with our Sheltie "Blue Belle" and our Manx cat "Tonto". My name is Charlotte Jayne, but I prefer to go by Jayne or CJ. Both names are short and simple and I am "Sweet Jayne" all the way! That's what my honey always calls me. I got so much hell in school for my first name and when I moved to California all the way from Spartanburg, SC; I wanted to start my new life and I did.

I am a very strong advocate for medicinal marijuana or cannabis as I prefer to call it and Good Kharma (karma with heart).  I feel that I would not still be alive nearly 8 years later (update 10/11/10) with out utilizing this very powerful medicine which has been used for 5000+ years.   I have had 7 major abdominal surgeries and lots of work done on my poor intestines which I'm not so sure they are working fully; I also have a permanent hole in my stomach in order to relieve pressure (sometimes I am unable to fart and that hurts greatly and causes extreme chronic pain); I also suffer from extreme nausea from radiation and so many past chemos that I can't even count.  And that is why I fight so strongly for the rights of others to be able to use this very powerful lifesaving medicine that so many patients are scared to even try.

I'm also very avid supporter of good karma and doing good things for others while promoting peace.   I live in the moment and I always question; what is the best way to spend this  very moment and I always lean towards making others feel better about themselves.  I don't pity myself in anyway; I just use my situation to make others more thankful for what they already have.   My main question about life is "Why can't we all just get along?".   I live very strictly by the Golden Rule "Treat others how you would want to be treated".  I can always imagine putting myself into the shoes of others I would expect others to do the same.

I feel that life is way too short to be disgruntled or to feel hatred towards others; so when you are sitting in traffic and the person in front of you drives too slow or just makes you mad; always remember that person's life is worth waiting for. You don't know them just by sitting behind them at a stop light. I also don't sweat the small things in life and I always love a good laugh, no matter what the situation. I'm always laughing at myself as I do and go through so many silly things in my life.

I also believe strongly in honesty (the truth shall set you free!) and I certainly don't believe in taking advantage of others. It's just plain wrong and not to mention; it's bad kharma.   I would never feel right if I were to even accidentally take advantage of anyone.   I have to admit that sometimes I feel guilty when others offer to help me and I'm not sure why.   If others are good to me, I must be good to them. I never, ever take kindness for granted; I treasure it always in my heart. We all need to carry our own weight and do what we can in this lifetime. You just can't sit back and let life just fly by; try to do something good for the world! 

I also feel that the only way to judge anyone is by their heart and soul and most of all their personality. For example, someone's wallet or personal possessions will never make them a better person (you can never, ever buy your way to happiness); instead its how you treat yourself and others. Instead of being greedy, try sharing; it's a very, very good thing to do and it's what I've been taught as a young child; it's how I live!) It feels good to share with others!

You really do miss out on life when you don't get to know how wonderful so many others can be that you may have never met. You can't just categorize everyone into one slot. I have met plenty of people of all races, sexual orientations, religions, careers, etc. who had the most wonderful hearts made of gold and so many unique stories to tell about themselves. These individuals really fascinated me and inspired me at the same time. I learned something I never knew from each one of them. There really is a big open world out there where there is so much in life to learn about and to not just focus on all the bad; try to see all the good thing that you may be missing out on. You never reach a moment in life where you know everything.

OK now back to me, I currently have Recurrent Stage IIIc Ovarian Cancer and I am fighting it tooth and nail and with all the might that I have in my heart and soul. I was first diagnosed with this dreadful disease on Nov. 15th, 2002. What a nightmare that was to wake up to. That was by far the worst dream of my life or how I wished it had only been dream! I was only going in for a routine surgery to remove a cyst off of my right ovary. I had a panic attack just before that surgery and everyone around me told me that I had nothing at all to worry about; I'm young and healthy; nothing. Maybe a 5% chance that I might have cancer?  That was it!

Well, while I was slowly awaking from that surgery, I kept hearing nurses and doctors saying, "What kind of Cancer? it's Ovarian Cancer stage 3". I know it sounds selfish, but I kept thinking, "gee, I hope they aren't talking about me." I would go to sleep and wake up, hoping that it was all just a bad dream and that maybe it's just the person that might be sleeping right next to me that I've been hearing about. " I'm still healthy right?" or at least I kept trying to tell myself that.

When I finally did wake up, I saw this bright light in my face (I thought I had crossed over to the other side) and then as my eyes focused slowly on my finance; he was standing right over my bed smiling at me gently holding the engagement ring that he had given to me when he had first proposed to me nearly six months before. (I had to remove all jewelry before the surgery) He was asking me to Marry Him. I was being proposed to as I awoke from what I thought might just be a nightmare. The ring was placed neatly in the beautiful wooden box that it came in and it was open so that I could see it sparkling in the light. He kissed my forehead and he just told me that he didn't care that I would never bare his children and that he loved me more than anything. It was as if he already knew that he was in for the fight of his life. Just hearing those words made me feel better than ever about the dire situation; it really warmed my heart.

Instead of focusing on this horrible, horrible situation; I got to plan my very special wedding. My husband and I had originally planned to get married in April, of 2003, but that soon changed. We were married on December 3rd, 2002 just 2 days before my very 1st chemo treatment of Taxol & Carboplatinum and just 9 days after being released from the hospital. We felt the need to be strong together so that we could beat this terrible disease together, hand in hand; the way that it should be. What a roller coaster ride that was and it still kinda is.

We are what soul mates are often consisted of; parallel similarities in how we both grew up and the amount of fun that we always seem to have together. We have that special connection and it has gotten us through a lot in nearly 8 years of marriage. Our love for one another can move mountains; we really are a POWER COUPLE!)

I love it when I see two elderly people who love each other and take care of one another (like pulling out the chair or just helping assist) and I see us that way even though we are young (too young to be going through all of this); after all, I do have an Old Lady Disease! We went through 5 more major surgeries after that one, a few more handfuls of near death experiences, many, many trips to the emergency room, and also many trips to Tahoe for some nice deep powder, trips to the beach, concerts, and we even bought our first home together.

Despite having had those 4 major abdominal surgeries (well now it's up to 6), I still have a good quality of life and I sure love it! I still feel incredibly lucky and am so thankful for everyday that I am given. I was incredibly fortunate enough to have had 3 and half years of being cancer free. That was awesome!

The Curse returned officially returned in April of 2006. My honey got me an amazing dog for my birthday (we got her a little earlier than that (May 6, 2006) in June 2006 which I started training right away to become my service dog.     I started back on Chemo in August of 2006 and was told that I would remain on chemo indefinitely (for the rest of my life or as long as my body could take it). I was very lucky to be on new drug called Avastin which is made by Genentech. It didn't make my hair fall out but it deprived those nasty horrible tumors of a much needed blood supply. In other words those nasty horrible tumors were shrunk nearly to death and my CA 125 decreased. In May 2007 I was taken off the drug due to some internal bleeding and some painful bowel blockages. I was even hospitalized a few times, but we avoided surgery then. It was  quite dramatic but we got through it!)

I got to have a whole 15 months of parole (no chemo) and believe me, I loved every minute of it. I was able to donate my long beautiful hair to "Locks of Love" back in May 2008 (all 16"). Later that same month of 2008, I was hospitalized with another bowel blockage and it was apparent that my break of having chemo would soon be over. I lost all the 40 lbs that I had put on; all my happy fat; gone! It sure was fun getting fat! I loved it!) - Can't wait to do it again!

In August 2008, I started some really heavy duty chemo (more Avastin and a pill called Etoposide) that was accompanied with some heavy duty side effects; nausea, some hair loss, cramping in the abdominal area (sometimes it felt as if I had razer blades in my stomach trying to digest), and a nasty metal taste in my mouth. (the pot helped get rid of that taste and it made me so very thirsty that I drink lots and lots of water which I feel saved my life). I was having horrible constipation on that drug and the large of amounts of water I drank helped moved things through.

  I had already taken 3 and half months off of work and mostly focused on healing. and going through the horrors of more chemo. When I wasn't so sick, I was enjoying every waking moment of living even if it was just walking my dog outside. I eventually returned to work in December of 2008 and everyone at work was so loving and supportive to me.  I had missed my co-workers so much and even got to go on a snowboarding trip with one of them.  I had an absolute blast and every time I'm sitting in a cold dark hospital room; I think of those days I had the most fun!  I was actually having lots of fun working and getting my mind off the cancer and stuff. I got to go snowboarding the day after Christmas (with my sweetie) and it was a blast.  Those days I will never forget and they keep me going when I think of happy places; it's almost always enjoying a nice smooth run down a mountain. I feel that's where heaven is!)  I recovered  from a few stints in the hospital and then for a small brief period, I got to go snowboarding a few times in February 2009. It was such a blast each time!)

Well here is the tumor that was removed on 3/15/09. I had this alien (tumor) trying to get out of my tummy. What a trip!) I had plenty more hospitalizations and ER run after that!; NG tubes and so much more; I even had to have a pee bag (nephostomy tube).  I did get a small intestinal rupture from the Avastin and then after
While I am still recovering all of those surgeries; I now have a permanent hole in my tummy with a tube; otherwise known as a G-tube for releasing gastro intestinal pressure. for which I got a serious infection while in the hospital, my bladder and kidneys also got infected. My right kidney got blocked (it's actually blocked permanently because I do have a stint in there) by either the cancer, scar tissue, or from stitches from the surgery. The good news about that was on June 18, 2009, we had a successful surgery to remove the nephostomy bag and insert and internal stint on my right ureter! Yeah!  Check out my nephostomy bag fashion! I didn't want anyone just checking out my pee; that's kind of personal.  Pee and that bag felt horrid on my skin; and many asked why not just put the bag under my clothes; well "Hell NO!"  I covered that bag with one of my many scarves!

Yes, I have spent much time in the hospital  healing and praying that I would get over all of this. This disease is very ugly.  Then I had my 6th major abdominal surgery on July 27th, 2009. That's just the reality of living with this horrible disease and making the most of it. You can either feel sorry for yourself or be an absolute blast to be around.    I personally like to laugh at myself and cannabis kind of helps me do that and therefore others get to laugh at me as well? What's the harm in that? .  I clean the house sometimes and sometimes I do  and say the most outrageous things that no one else has to think about in being in my situation.  What's wrong with that.?  I am definitely one who needs to laugh every once in while.  No one really likes to have  to hang with those people who play victim and complain about life.  Life is awesome! It's so very much worth me fighting for. I have the most loving husband I could ever ask for.

I don't feel like a victim at all; I'm a fighter who just wants to live!) Live it up each day that you are given ; I know I do no matter what! I really enjoy the kindness of others and I certainly appreciate the friends and family that are willing to help me get me through this. All those prayers and good thoughts and especially all the love always make a difference.

I certainly hope that none of you feel bad for me at all because my only wish is for you and others is to be happy for what you do have.  Feel blessed. Just be thankful for all the things that you probably don't think much about but should.   For me, it's just the little things in life that make up the big picture.  Please realize just how lucky you are if you do have children or even a family or just someone else that loves you unconditionally. None of us know when our time is up and we really have to make the most of right now. Please, don't fret or even stress over the past, instead just concentrate on what you can do in the present that affects the future. As soon as I am better; I will volunteer my time and talents to helping others. It's just been very hard lately as my health has been so unpredictable.

My own mother was an alcoholic; and often times (when I was just a teen; maybe 13-16) she would often forget and leave me places where the only way that  I could get home was to hitch hike; I got into some dangerous situations where I could have easily been killed or raped (thank GOD it never happened and I was a little street smart fighter).  I was lucky enough to have a guardian angel watching over me.  Oh how I wished so much that my mother had been smoking pot rather than drinking alcohol.  She could have only been getting the munchies and making me a nice meal to come home to rather than her passed out in puke and having to clean her up and then deal with her hangovers or black outs and sometimes beatings.  I am really am all for the legalization of cannabis.  There really have been no deaths in all of history from this plant and it really is a miracle plant.  I am shocked at how fast it gets rid of some of my worst symptoms.   Hell I got to have 8 years with my honey instead of just 2 years and I do have Cannabis and my persistent sweet husband caretaker to thank!)

I sincerely hope that my honest true story has inspired you. If you happen to know of any cancer patients that you feel could benefit from my experience, please feel free to give them my email address (shoppingkharma@gmail.com) or just send them to this blog (only if they are not so easily offended = I can be brutally honest and yes I tend to use profanity at times). I feel that all patients should be able to take care of one another; especially the strong ones; I feel that I am strong enough to at least warn others of the symptoms of this disease and do demand a CA125 and /or Vaginal ultra sound if you have any suspicions that you have this horrible disease.  The key to surviving is catching it early and not late as in my case. . An American life is lost to cancer every 21 seconds, that's over 700,000 just in the US which is far more than terrorism. Priorities really need to be reevaluated because we really do need to focus on this terror and to find a cure in this lifetime.

The Big Question: So what is this Shopping Kharma all about.? Where in the hell did I come up with such a stupid name? Well, I started a website (www.shoppingkharma.com) several years ago in hopes that my bright spirit might just make some peace in this world, raise some money for all the good causes that I believe in, and I just had to shut it down.  Well I didn't make a dime on anything; but it sure was fun.  I lost quite a bit of money but making others feel better about themselves is priceless! Everything on the site; gone.  All that hard work; for nothing; but I did start this blog so I guess some of it wasn't all for nothing.  I got to save some horses too which I am such a lover of!

I have always had this dream of helping others in this big world of ours just through my writings. or from my website, you could shop for ways to give good kharma in hopes they could feel the warmth of helping others or just being a good person with a warm soul. Perhaps I could make people who feel violent and hopeless; cheerful and appreciating life once again. I could stop violence with my spirit. It really does feel wonderful when you make someone else's day by just helping them out or just giving them your time.

Why do I spell Kharma with an "H"? The "h" in Kharma is for heart. When you give good kharma you must really mean it and you must have heart. I also noticed that when I pronounce the word "kharma" is almost sounds to me like it has an "h" (it could be my southern-ness) especially if that person giving it has a heart of gold. I recognize good people and I am so thankful that there are good people in this world. I just hope I inspire others to learn to compromise, work together, get along, and for more Peace in this world. OK there's the hippy side of me coming out!)

Well another sad update is that I am starting hospice care soon and hope to be around for a while but if that doesn't happen at least you found this page and hopefully it will help many lives!)

I guess some of my dislikes in life include those who are greedy and selfish; they really need to learn to think of others who really need it. Also, there's nothing at all wrong with sharing with others.. I also don't understand pure laziness or those who play victim in most situations rather than taking responsibility for their own actions. Life can pass us by but it's up to us to cease the moments and to make a difference in making this world a better place to live. You really don't loose anything when you do; if anything you gain friendship and good kharma. That all.  I also believe very strongly that what comes around goes around! Peace and Love to all!o)


Friday, April 24, 2009

Finally Home...again..

I awoke this morning at 6 am for my blood test, emptying my nephostomy, and the dreaded shot (Octreotide Acetate injection). Since I have been having such a problem with the hunger issue; I figured I would at least ask the doctors if an appetite suppressant might work in my situation. I got the idea after seeing hundreds of diet commercials watching so much trash TV in this joint. OK sometimes I can't help it and I will occasionally watch Steve Wilco as he stands there and ridicules child molester, dead beat dads, liers, cheats, and even horrible moms on his stage. How do people actually get the nerve to go on his show? And sometimes I will watch Maury (I miss Montel Williams), but Tyra is OK sometimes. Well anyway back to the diet pills. I'm pretty desperate and to wait an entire 10 more days to eat something seems pretty drastic for me and also to be at home with all of these wonderful restaurants and food in my area; GOD does it seem hard! This will be the ultimate test of how strong I am. Can I do this?

I had the first doctor come in shortly after 7am and I asked her about my bladder infection (not being able to control it) and of course the whole appetite suppressant idea. She informed me that most appetite suppressants contain something along the lines of meth amphetamine. That burst my bubble because I had actually thought it might be a good idea. I'm so desperate; I really hate being hungry and starving all the time. This totally sucks!( 10 days really does seem like a long time. How do people go on hunger strikes, detox, or those poor hungry children!( How incredibly sad. I do plan to visit the homeless shelter and drop off a donation and keep it up (do what I can afford). Hunger sucks!

After 8pm my primary doctor came in to see me and informed that I could drink water and clear liquids - NO SUGAR!. I can teas and even do sugar free Jell-O. I hate Jell-O but perhaps strawberry flavor would be good. I figure perhaps it can fill me up and maybe it won't taste as bad as it did when I was 13ish. Oh how I hated Jell-O as a kid! He also informed me that I get to eat on Friday (that's just 7 more days! = 3 less than before!) I still need some help getting through this testing time of being starved for so long but I think I can do it. I just think about that horrible aweful infection or fistula coming back and that can make me loose my appetite right away; OK maybe my appetite won't be gone but at least my desire will be there. Die Fistula! Die! I don't need another freaky incident of having wierd shit coming out of my surgery site.

I watched "the Dog Whisperer" and then some Maury, and Steve Wilco (trash TV) as I waited for time to go by. My honey arrived around 11am to get me ready to go home. He had to go to the Pharmacy, get my computer and camera, and other stuff loaded in the truck; the Pharmacy took forever. My poor honey had to wait over 2 hours

My honey told me on the way home that he told both of them that he was going to go pick up Mommy and Tonto talked right back to him very excitedly (a whole entire conversation) and Blue Belle's ears were pricked forward flipped ever so perfectly as her head tilted from side to side as if to ask "Mommy's really coming home?". It was very cute to hear my honey tell this story but I knew he was serious by the reaction of the pets. They tend to do this especially when you talk to them. It was as if they understood him.

Well after 2 and half hours of waiting I finally got to go home and it sure feels great to be home. Both Blue Belle and Tonto still can't believe that I am at home. As you can see in this photo, Tonto did not want to leave my site and he just sat here and watched TV with me. He really likes watching hockey and of course Animal Planet. He loves Victoria Stillwell of "It's me or the Dog!". See him just sitting right there? He would watch the TV and then turn around and look at me like that all because he couldn't believe mommy was just sitting there with him. It was so cute to see!)

I do have to be honest that we are worried about him trying to play with my feeding tube because it's white and thin and it could entice him to wack at it and if he makes a whole it might be very yummy. He does not need to gain any more weight! So far so good; he's not chasing it or wacking it.

At about 3:30pm a really nice nurse came by our house to make sure everything is OK; go over all medications, my picc line, nephostomy dressing (on my back), and of course my bags of food with supplements. She had tons of paperwork to fill out and it took over 2 and half hours. She changed my dressing (didn't have the right kit but used guaze? instead of the little pack man thing around the picc insertion point) on my nephostomy tube on my back (SHIT did that tickle & hurt in the worst way - OMG! I have hair on my back?), and she changed my picc line which I took a photo of (it's just above Tonto's photo) to see how trippy that looks. I was puzzled as to why she had to change it even though she didn't have the right kit. I hate pain anyway; especially unnecessary pain. Notice those wrinkles on my arm; that's from tape that was literally pulled off my now hairless arm. Ouch!!( My honey has to flush my main picc line twice a day and the feeding one (purple) once a day when he changes my food. More responsibilities for Dr. Jim!

I'm pretty bummed that the I have to be hooked to this back pack 24 hours a day. It weighs about 15lbs with a full bag of food. I was told that I would have 4 hours of freedom where I could detach myself from it for about 4-6 hours but the nurse just informed me that this is not true. My stupid machine thingy is programmed to slow down the feeding for 4 hours and I should still be plugged in? How bummed am I about this?

Well later on at 7pm we had another nurse show up to help my honey with the food bag, the shot, and changing my dressing (on my tummy=nasty one which is healing nicely). He was nervous but he got everything correct in what he was doing. The nurse mostly showed him some tricks and helped in the procedures of doing what he needed to do. The other nurse had arrived too early for the feeding and all of this stuff. She came into the living room as my honey was laying out everything he needed to get my food bag together, even talking to himself to help himself remind him of what he needed to do to better prepare. She told me she thought he was very cute and he was doing a super job. She had to ask him what he did for a living because she thought it could be related to nursing but no; not at all; just loving his wife and having the experience of taking care of her. It took about and hour and half to get everything done because of priming the food bag apparatus (not sure what it is called), then having to flush both of my picc lines too! I'm so incredibly proud of him!) What a wonderful man to be married to! I couldn't have asked for a better man - I really do have it made!) Many wait their whole lives for love like that and I am so blessed to already have it!)

What a huge responsibility my honey is taking on and if you really want to know the true meaning of love; there you go. That's it. We love each other no matter what and would do the same for each other. I really hate being the patient sometimes but I guess it's better that I suffer instead of him because I know it will kill me to have to see him have to go through what I go through. I just can't imagine what he has to go through watching his love suffer as I do with this horrible disease. I often wonder why we were chosen to have to go through all of this and what we might have done to deserve this. That has been the question lately; as patients we often ask "why me?". I had got over it after a while but lately with all the trouble that I have been having; I feel I am back at that point. I'm pretty strong but sometimes it can be downright ridiculous what I have to go through. Yes, I'm admitting to being frustrated many times and am being a big baby!) I get through it each time and I'm so very thankful to still be alive!) Peace and Love to all!)

Forgot to mention; the second nurse then informed us that I do get a four break of being hooked up to that big black bag of food! First nurse is wrong! Yippeee!!!!)

Wednesday, April 22, 2009

Preparing to go home...

My tentative dates to go home are either tomorrow (Thursday) or Friday. More than likely Friday and I will be getting home nurses to come and check on me and make sure my husband and I are doing things correctly.

Well evidently there will lots to be learned tonight on how to clean myself and take care of all the contraptions that I will need to care for. I have an IV pole and unit that all needs to be learned about tonight at 8pm. My honey will be educated on everything on how to take care of me. He is taking his "Family Medical Leave" tomorrow afternoon. He will be home for a whole month taking care of me.

I have my own feeding tube and the food itself (comes in huge white bags) needs it's very own shelf in the refrigerator (which is currently cleaning out). I have to go through a whole bag each day and they have it where I get about 6-8 hours of freedom (not being hooked up to the IVs) in a 24 hour day. That will be nice!) I can work my way down from there as I improve more and more each day. I might get to start liquids like next Monday or Wednesday or later than that; food is scheduled to start on Monday, May 4th. We will see. We are counting down the days until I get to eat (12 more days!).

In addition to all the responsibilities of taking care of me; my honey will have to give me shots under the skin twice a day. I'm not exactly sure what the shots are for, but I think to counter the digestive juices that could give me stomach ulcers from not eating. The nurse at the hospital also told me that it also helps to reduce the fistula or infections. I sure hope and pray that my colon and intestines will heal. When I am able to drink fluids; I plan to include drinking Aloe Juice. The Aloe Juice should help my intestines and colon to heal at least in my mind it will. What the hell, I can even do some meditation exercises in order to convince myself that I am indeed strong as hell!) I can get through this.

I have all kinds of yummy foods in the house (to tempt me) that I really, really wish I could eat but anytime I feel like eating; I can go on a walk with Miss Blue Belle or try to think of the most disgusting thing I can think of just so that I won't eat. It kind of reminds me of that one author that I studied in college "Franz Kafka". He had a form of stomach cancer or throat cancer for which he could not eat; he basically starved to death but he wrote some brilliant pieces about what he endured "Metamorphosis" and the "Hunger Artist". There are many different theories as to how he died but in many books they determined that he died of tuberculosis. I feel the throat or stomach cancer really reflects all that he had written about although it may not be true; he did starve to death ultimately. I know this hunger feels as if I am starving to death, but I know I won't die!)

UPDATE (Thursday, April 23rd): The teaching session went fantastic and my honey really is a natural. He could be a nurse; I made fun of him a little but told him I would never ever call him "nurse Focker" but he was amazing. I'm so incredibly proud of him. No photos just yet but he has another teaching session later on tonight which I plan to remember to snap a photo, download and post right here. The contraption that my feeding bag comes is just like a back pack and is stored in there and then hung from an IV pole.

Here's to my recovery! I plan to take more time off in order to heal more appropriately. My return date to work will be June 21st, Summer Solstice. I wanted my return to work to be magical and this will provide me plenty of time to heal after my nephostomy is taken out. 2 weeks of recovery from that should be sufficient. I have 6 weeks of having to deal with this nephostomy and my brother is also planning to visit. I have not seen him since October 2005. I'm so excited!)

Almost forgot to mention that my father will be visiting in 2 weeks to help my honey take care of me. Must enjoy everyday no matter what even though I am in the hospital. I am getting plenty of homework done even though the class may already be finished; I still have to finish the book no matter what. Start something; must finish or at least try to!)

Monday, April 20, 2009

They moved me!

Today is officially 4/20 and how I wish I was at home for this special holiday to celebrate. It would be much better than these chemical pain killers but the downside would be the appetite. I still have an appetite now despite and wish it could just go away to make it easier on me. (I can't eat for another 2 weeks)

Well, it was about time I loose those 50 channels! I don't deserve them anymore and had to be moved to the surgical department where I only get 15 channels!(

How disappointing. I tried my best to stop the move but they said that I needed to go to this other department where they could handle caring for me much better. I didn't quite understand why but they have their reasons. It just didn't make any sense to me.

In all of this, I had also noticed that my text book was missing. The brute (I will call him Brutus) in emergency who had brutalized my veins when I first arrived had also packed my things to go to my room. I guess he was ready to get rid of me. He evidently did not pack my text book which was clearly with my items in emergency right down to the paperwork which had been folded and placed inside my text book. I had a nice mechanical pencil that I had clipped to some of the pages inside the book as well. I did this so that I wouldn't loose the pencil and so that it wouldn't fall out of the book. It was securely inside the book.

The reason I had noticed it was missing was that I had decided yesterday that I must quit my procrastinating and do some homework finally. I dug and dug trying to find my book and then it hit me that Brutus must have forgotten to pack my text book. I was right.

I asked the nurse if there was a lost and found and if perhaps I could get my textbook back ("Medical Terminology made Easy").

She had called down and there was no such book but told me to dial "0" and then ask to be transferred to Emergency. When I called down, the nice woman who had answered the phone remembered the book specifically. They found the book but my mechanical pencil is missing so no homework completion for me. I have no writing utensils and will have to get my honey to get me another mechanical pencil. Sorry about this boring nonsense but it really pissed me off that Brutus did this to me. The mechanical pencil was removed since it had been pinned to some of the pages and that to me was very clear. Brutus pissed me off again!

Well I had to move to the low budge room at around 10pm last night. Hopefully I can bitch my way to get the cable finally turned on in this department. Who knows? I can be pretty convincing at times. It's not fair to have only 15 channels here in this department and 50 in the other. Who do I need to talk to about this? I will find out. We all have to stay here and why not have more amenities when we are to be so bored in our rooms? Yes, the hospital can be very boring especially with only 15 channels to watch on TV.

I almost forgot, I did get a nice visit with some of neighbors yesterday (2 separate visits). My gourmet neighbor came by and brought me a beautiful white orchid and these cute little slippers which I really needed walking around on that hospital floor. It was a nice visit and talks of the pool opening up yesterday since the weather forecast has been incredibly hot. My other neighbors also stopped by briefly and also spoke of the hot, hot weather. It was nice to be inside air conditioning. In fact today will be in the 90's in San Jose and a very first spare the air day. My honey will be driving my Prius today.


Lately my tummy has been hurting worse and worse from severe hunger pains. I never had these so bad before when I didn't eat for 2 weeks; not sure why they are so bad now? This has been a total mystery for me but I have been craving everything possible from Burger King, to Caramel candies, Starbucks, Whole Foods, every food possible (feathers and fins only for meats). No cravings for red meat! I have been taking morphine and percoset because the cramping is so painful.

Still no fevers and my vitals have remained normal. My sore is improving and hopefully the fistula is healing up OK. There is still some infection coming out of the sore itself and gauze is usually packed with either peroxide or saline solution inside this sore. It looks pretty heavy duty but there is clearly no readness anywhere near those pen marks where the infection and redness was. This is good news.

I am hoping to go home this week but I'm not counting on it. I will be prepared for next week but in the mean time I need to get the cable turned on in this department if at all possible if I have to stay this weekend. I am hooked on the show "Groomer Has It" on Animal Planet and don't wish to miss my first episode (actually it's the 3rd one). I think I'm so into the show because my brother should be on the show. He loves his job being a groomer and has for the last 18 years. I have a whole week to get this done if I am staying another week.
Here's to getting out of here in a few days!

UPDATE: I called the engineering department and they came in and reprogrammed my TV and I now have cable. I get to watch "the Dog Whisperer" and all of my favorite animal shows! Yippee!

My primary doctor/surgeon came in to see me and I hadn't seen him the entire time I have been here. He looked at my nephostomy tubes, the sore, and my picc line and we talked for a little while as he explained that I may get to go home Thursday or Friday. Now I won't be able to eat or drink anything for at least another 2 weeks while my bowels heal. Also my nephastomy bag will have to stay for at least a month. When I return for my follow up appointment dye will be inserted into my kidney to find out where the block or what is causing it. I will be able to hopefully get a stint. Prayers needed that this nephastomy is not permanent. It could be permanent if there is no way to insert a stint. The block could be from the cancer, stitches from the surgery, or scar tissue. Not sure yet but we will find out.

I will have to go home with the picc line and the feeding bag also. A nurse will have to come by daily to change that and the fluids. I would also need to be hooked up to my feeding tube for 20 hours of the day and be shown how to care for everything. My doctor told me that he has total confidence that my husband and I can handle all of this. My honey is going to be taking the Family Medical Leave Act in order to take care of me. I know I can get through this and besides I will have drugs to help me with the pain in my stomach. I can only get stronger and I can definately feel it. I have more energy and it doesn't seem feasible to continue to stay in the hospital when I can easily move around and not have the fevers and infections!) I get to go home soon!!!!)

Well of course my honey would come and visit with me today. We had a nice nap on the bed together; he forgot his phone and had to drag Miss Blue Belle in this evening to see me and that certainly cheered me up and hope it will you as well! Here's to more doggie therapy!)

Saturday, April 18, 2009

Another Pick Line...

Well today I saw the doctors and my dressing was cleaned; it wasn't so bad just a little yellowish infection running out of the wound. No fevers and my vitals have been normal. This is encouraging but I can't wait to eat; I am so dam hungry. Thought about eating my fingernails! Just kidding!) That's pretty nasty!

I would need to get a picc line inserted for feeding, (I had one inserted last time I was in the hospital only I was much more drugged up & don't remember it as much) taking blood cultures, and receiving my fluids. I got it inserted and that was a hard thing to do.

I had to get morphine, Percoset, and an Ativan because I am such a chicken monkey when it comes to pain from sharp needles poking major arteries. We got some photos of me getting the pick line but guess what? They are on my D80 Camera and I can't download them here until later; so yes this posting will be updated when I eventually get out of the hospital.

This photo will have to do of my final pick line in my left arm. Yes we tried my right arm and dam was that so very painful because the vein itself is still not healed from last time. It was impossible to insert. It's cool to watch because an ultra sound machine is used to first find that major artery in the arm which then leads to the heart. All of my nutrition will be absorbed through the blood stream therefore giving my bowels a much needed break so that my fistula and sore can heal once and for all and I can finally go home and eat to my heart's content!)

The whole ordeal is somewhat surgical in that I am covered with this blue cloth sheet and everything is sterilized. My arm has to sit sideways for an extended amount of time as this catheter is inserted and/or threaded into the large vein which leads to my heart. I can sort of feel it as it is inserted. On the right side it felt rough and rusty as it was being inserted and it hurt so bad. I was crying and trying my best to sit still and take it, but it wasn't working so we had to use my beloved left arm.

It takes about an hour just to set up for the whole process; bringing equipment and getting everything ready. My honey was there by my side holding my hand and calming me. I had my ear buds in and listening to my mellow rock and roll music which really helped; also being drugged up helped tons too. After the picc line is inserted and set up, then an x-ray is performed to make sure the picc line is placed in the correct position near the heart. Mine wasn't so it had to be readjusted. That was painful but I got through it. Now I can get my milk food tonight at 9pm. I hope it fills me up or satifies my hunger because it's pretty heavy duty right now. I'm even getting thirsty but I would rather be healed than to go through more hell!)

I was also told that the fluids would be decreased soon since I have been peeing more than most racehorses. (about 600cc every 2 hours from my left and 400cc out of the bag). That will be cool and I also got to get up and go on a walk. I really do feel strong and that I could easily go home from the hospital in just a couple more days but I still have to stay to be observed. It's understandable. While I was walking I heard my honey walking behind me with this beautiful fluffy dog. She had just had a bath and she felt so pretty. Miss Blue Belle was wagging her tail and smiling with her ears back to see me. We all walked back to my room for some love.

It was so awesome to have Miss Pretty Blue Belle visiting me and loving me. What awesome therapy than to have a pretty Blue Merle Shetland Sheepdog loving on me in the hospital. How could I not smile? We sat and watched some TV and then my honey had to go home; it was about 10pm last night and I was starting to nod off.

Check out these beautiful flowers that my dad sent me! My first flowers in the hospital (this visit). I have lots of people praying for me and lots of positive thoughts for my healing; maybe that's why I haven't had a temperature just yet which is absolutely awesome! That means the infection is healing. Thank you all from the bottom of my heart!

Friday, April 17, 2009

More Days for Observation...

My vitals have remained solid and very good this entire time I have been in the hospital; this includes my heart rate, oxygen level, pulse, and most importantly, my temperature; which has remained normal. They have not changed at all since I have been here (since Wednesday evening).

When the OBGYN doctors returned the very next morning which was yesterday (Thursday); it was revealed from my CAT scan that my right kidney is blocked from the infection. Now this could be from a number of causes. For now, I would need to get a tube inserted surgically and then a bag attached in order to collect the contents or my right kidney. In other words, I would need to get a pee bag. If I delayed or nothing was done; my right kidney could become permanently damaged.

We did arrive on time and everything seemed to be caught early so we really needed to act quick in order to save my right kidney. I was told this bag would need to remain in place for at least a few months. I was pretty bummed to say the least but I do need my right kidney so I'm over it for now and ready to begin this whole healing process for however long it should take. So what is this exactly? What's the terminology for this pee bag? It's called "Percutaneous Nephrostomy".

The whole surgical process for getting the nephrostomy was pretty trippy. I wasn't wheeled into surgery until a little after 4pm. I was first wheeled into the surgery waiting area with my honey by my side waiting until it was time for me to go in for my process. My honey gave me a long kiss before I was wheeled in to the surgery room as we each told each other how much we loved each other.

When I got into the room, my gurney was pushed directly next to the operating table; a whole team greeted me as they each did their own thing. I was instructed to move over to the operating table as several team members helped me over. It was a comfy operating table; I had a pillow to place my tummy directly onto and a nice toasty blanket was put on my back as I lied down on my stomach. One technician operated on my back and I could feel the cold oozy gel that was placed on me then the wand from the ultra sound machine which guided the technician who was to insert the tubes into my right kidney.

I was given medication to first numb me and then to sedate me but I was still awake enough to watch the screen and to hear everyone in the room and even communicate to them. After the drugs I could barely feel little needles in my back to numb the area in which to insert the tubes into my kidney. It didn't take very long at all. It seemed only about 10 minutes in all.

All of a sudden I asked "are you done?" and they all replied "yes, all done". I was then moved back to my gurney and then wheeled back to my room where my honey was patiently waiting. He walked over to help me back into my bed and then he kissed my forehead as we both told each other how much we loved each other. This happens all the time. We must tell each other how much we love each other at least a hundred times a day. It's just the way that it is. He is there for me and I am there for him even though lately it has seemed a little lopsided.

Now this bag here fills up surprisingly quickly and I have also been peeing up a storm. I'm not sure how I am going to handle so many months with this contraption but I know in my heart I can manage to. I wonder how riding on the motorcycle or even swimming will be with this contraption or if its even possibly? Will I be able to or do I need to skip this hot summer and not swim? I sure hope not; I pray this thing doesn't have to stay in as long as they are suggesting.

I did find that I was incredibly constipated yesterday and requested to have a suppository. The pharmacy was so incredibly slow that it took 7 hours to get my suppository. The nurse finally complained to the slow pharmacist that there are many out there who need a job and that he needs to put some fire into his ass. I laughed; what a an awesome crazy nurse! My kind of lady!)

I have been blessed with some very sweet nurses except for that huge brute downstairs in Emergency. He was the best at finding a vein? What the hell!? Give me a break! I have seen so many others who proved miracles on my viens. I mean miracles!) Anyway enough about the bad Kharma.

I finally got my suppository and shit out lots of tiny little pebbles (hard shit) and boy did it hurt. It was such a grueling process of trying to update my blog and keep running back and forth to the bathroom to squeeze and squeeze and only get a miserable little pebble and then have my ass burn like crazy. I finally had to give up and work on it this morning. I took many breaks and finally here it is!

Well back to last night, I finally had enough pain and started noticing that my tummy was leaking some so I just grabbed a big stack of paper towels and my puke bucket by my side. I had a shot of morphine for the incredible pain of rocks slowing squeezing out of my ass (the kind with sharp edges or at least it felt that way). I also had an extra padding of diaper stuff (the padding they normally put on hospital beds to keep you from peeing or pooing on your bed) and just lied there and let nature take it course. I finally got all the pebbles out one by one in my bed. My back hurting far to bad to try to utilize the bed pan, so the paper towels worked like a gem. After I was done, I emptied my bucket into the trash in the bathroom (so I wouldn't have to smell a thing).

My honey came by later on and spent the night with me. He was bummed because of the Sharks very poor performance on their game 1 of the Stanley Cup playoffs. A whole shut out by a rookie. He had me to cheer him up even though my situation is not too much of a cheer but we are just grateful that I am alive.

It was a long night of having to get more pain medication, benadryl, getting my nephrostomy bag emptied, peeing, or getting more water.

UPDATE: I have been getting treated by that one doctor that had been so negative. I kind of feel he was negative at that time because he was tired and of course I nearly looked dead to him because I was in dire need of a blood transfusion (discoloration in my skin). I was in very bad shape and I picked up on that which is more than likely what made me freak out.

He is currently being very wonderful with us. These two days have been encouraging and he has given me hope that I will healing up just fine. I always give people more chances to prove themselves. I understand completely that we all have our days. I just ask of others to just be pleasant with me and don't cause me any stress. That's not too much to ask for at all. Peace and Love.

He has been encouraged by my healing. He told me today that the nephrostomy may just be in me for about a month or less than a month. I will be able to swim this summer. I will need to get a stint in order to keep the opening which more than likely is blocked due to scar tissue build up from all of my surgeries. This would be simple and I'm not sure how long the stint will have to be in but I would need to see a urologist for all of that. I may get to go home tomorrow but we will see.

If you notice in this photo, you will see 2 black lines. These are sutures from my incision to the abdominal wall with the layer of skin on top. Pretty facinating. Now the pen marks are marks where my skin was red from the infection. Now you see no infection what so ever just the gruesome photo of a hole which will heal up just fine!)

UPDATE: At around 5:30pm today; my husband and I were watching "the Dog Whisperer" together and I was actually craving a Fish Sandwich with extra tarter sauce, cravings for my favorite pasta salad; oh and so much more. I was actually fantasizing about all kinds of fattening foods I could eat once I get out of this joint. I felt so incredibly hungry and still am.

Well that soon changed when one of the OBGYN doctors came by to check on my dressing. We were all so confident that I could get to go home tomorrow and that it was all over. As I pulled my gown up; our mouths all dropped as we saw the dressing was wet with yellow. "Oh No! It can't be!" I thought. We pulled every thing back and the gauze that fit inside the wound was nearly black from fecal matter. A fistula had made it's way to my wound and this originated in my bowels. No food or water for me for at least a week or two; quite possibly longer. I will need to get a pick line inserted tomorrow to begin intravenous feeding so that I don't waste away to nothing.

How incredibly disappointing to know that I will need to spend another couple of weeks in the hospital again. I cried and cried in my honey's arms and the nurse brought me a painkiller and an Ativan to calm me down.

My honey calmed me and reassured me and together we both agreed that damn it! I'm one tough woman, I can still heal; I can get through this; I just know that I can! I have love, plenty of support from family and friends who also love me, more TV channels (National Geographic, Animal Planet) than before to get me by; although I really do miss Rachel Maddow like crazy; they do have 2 Fox Noise channels which really puzzles me and no MSNBC. It's not really news; it's mostly propaganda and besides Bill O'Reilly is Prozac for me; first he makes me crazy and second he kills my sex drive because he is so dam vile and nasty.

Anyway more updates to come!) Hope you enjoy even though I am stuck here in the hospital for what appears to be a long time. I will be healing; I promise!)

Wednesday, April 15, 2009

One Month Anniversary...

Today happens to be the one month anniversary since my 5th major abdominal surgery. What a month this has been and so many times since I have been home not quite the same amount of time as I was in the hospital; we've nearly had to go back several times because of fevers and infections. I had extreme temperatures, fights with my honey about not wanting to go and gotten through quite a bit in just a month.

Well that all changed this evening when I started having some extreme diarrhea. I started getting horribly painful anal spasms and had to take Ativan and Vicoden to rid myself of this pain and of course several nice shallow hot baths to relieve the pain on my poor tush. Well about 5pm as I was sitting relaxing in the tub; I noticed all of a sudden this yellow milky slimy infection stuff just oozing out of a hole in my incision area. It freaked me out so much. Just as I was getting up out of the bathtub to grab a towel and some bandages; in walks my honey.

I lied down on the bed as he cleaned the area and bandaged it up. Miss Blue Belle could tell something was wrong as she sat on my right side as my husband was on my left side. She was seated leaning against me as if to keep me from getting up and leaving. At that time; it was just a very small hole; maybe the size of large Sharpie pen point. We couldn't even see inside the hole and we immediately called our doctor and left a message.

As my honey hurried to take Miss Blue Belle out for a pottie break, I called the advice nurse who had me on hold for over 20 minutes. By the time I reached a nurse; my honey took over and then the doctor advised us to come into the emergency room.

We arrived at the emergency room and thank God it wasn't that busy. They took us right in. I got a temp room in about 10 minutes so that I could see a doctor. I was praying it would be something simple and that we could go home with in a few hours but in all reality it certainly wasn't.

In walked this huge brute who would be my emergency room nurse. He was quite forceful with me. He wouldn't even allow for me to tell him which of my veins were not good; he pretended to listen but then instead he brutalized my arms and I pleaded with him to please save my 1 good vein for my blood tests; but NO WAY was he going to do that. He just didn't have any talent enough to find another vein. It was much easier to just brutalize me.

The doctor had requested that I get a CAT scan and the huge brute wouldn't even allow for me to take the shot glass of the CAT scan fluid with the water chaser as many other nurses had allowed me to do. I bet he got off watching me get sick trying to drink the whole CAT scan fluid mixed with water. I didn't like this nurse at all even though my husband and him talked military he should not treat patients like they are merely test subjects or inanimate objects. That's exactly how I felt. He criticised me for telling him how to do his job and he even made it painful when he used my 1 good vein.

I did get to speak with several doctors and they all looked at my strange wound. See that whole there; that's what I speak of. It got bigger and bigger but it has this strange fettichinni (I can't spell; it's an Italian noodle) looking cloth stuff with medication to soak up infection.

I finally got admitted to my own room upstairs and the doctors came and examined me once again to change up the dressing some more. What they had explained to me was that there could be a deeper infection deep inside.

The body has it's way of communicating and this little infection here could communicate with other parts of the body or looking for more areas to infect.

To Be Continued....

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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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