Bladder/Urinary infection...always something...

Here is Mr. Tonto enjoying a nice walk outside at night.  Sometimes I am able to get up and take him with my honey.  Sometimes he will cry at the door hinting that he wants to go outside.  Lately it's been hard to even be further than 10ft from the closest bathroom and of course walking him is not an option at that time.  He has been crying quite a bit lately and hinting that he would like to walk outside.  He still runs away from me when I bring out the leash (maybe he enjoys being chased; he sure looks like he enjoys it way too much) from the leash expecting that I will let him out like Blue Belle with out the leash but there is no way to trust him.  He would get distracted with just a bug or a squirrel and just tear off running for something.  He doesn't listen all that well so it's just safer to just have him on his leash.  Sometimes he will get a good running start enough to run up about 3-4 ft up one of our trees in the complex.  He looks over at me or my honey just like a cute Koala Bear.

 Tonto worries about me sometimes and likes to sit in the chair next to the couch so that he can be close to me.  I know he can tell when I'm in pain.  Well this weekend, I spent most of my time in bed/couch and in horrible pain.  I emailed my doctor this weekend thinking that he might be on duty this weekend at the hospital but I didn't hear back from him until yesterday morning.   My nurse came by around noonish to change my picc line dressing and to take blood tests and even a urine test since I have been in such horrid pain peeing out glass out of my pee pee hole! Youchhhhhh!  Even after peeing, I would drag myself back to the couch and just lay there in terrible pain.   It seemed that the pain just didn't stop after peeing; it was still quite uncomfortable.   My legs would shake uncontrollably as the glass pieces make it out of my pee hole!(  Oh  GOD did it hurts!( It hurts just to walk around.  Saturday was my better day; but the infection was definately coming on.  By Sunday it was full blown pain and misery.   I spent most of the day sleeping away and being drugged up on pain medication.  I hate doing that but sometimes the pain can be too overwhelming for me.   I really wanted to ride my bike but I was hurting way too bad down there to even sit on the seat.

The tests should come back tomorrow or so (takes about 48 hours) so that we can start the right kind of antibiotic.  I'm praying that I don't need to go into the hospital and hopefully can receive medication at home.  I'm on Cipro right now and also taking an over the counter medication called AZO that has Phenazopyridine as one of the main ingredients that should help give me some relief.  Having the stint in my ureter makes me super prone to these types of kidney, bladder, and urinary infections.   In fact I think I might even be prone to all types of infections or so it seems.  I am also fighting the side effects of these drugs which also includes the worst kind of diahrrea.  It's just not that pleasant especially being hooked up to my feeding tube (I have to carry that heavy backpack everywhere with me and that includes running my ass to the bathroom ASAP!)  At least I am still fighting this as strong as possible.  The kind things others do for me overshadows these types of problems.  My vaporizer has been helping with much of this pain and helping me keep fluids down.  I still have the horrid heartburn after eating anything; even chicken noodle soup with out the chicken and noodles; so it's just broth.  I wished so much I could just have piece of pizza, some thai food, even south indian food.  Oh how I miss just the simple things to eat.  Sushi is something I may never get to eat again.  My intestines are a mess; being cut open 7 times just might do it for most.  I'm just not giving up and still believe in a miracle that I will be able to eat one day soon.

This weekend my honey and I got to watch "Date Night" with Steve Carrell and Tina Fey.  I laughed nearly all the way through this movie and needed a good laugh but my honey thought it was dumb.  Maybe it was because I had smoked a joint prior and during the movie.  Either way, I needed a good laugh and to forget just for an hour and half that I suffer as I do.  I can just sit there watch a movie and look over at my sweet knight in shining armour.  I am always amazed how at how handsome he is and that he still loves me no matter what; no matter how disgusting my side effects and body gets; he still loves me.  I'm amazed all the time all that he does for me and am thankful.  I'm also very thankful for the friends that I have and those who try to help me out.  I hope to be around for a long time; at least long enough to write a good book that will hopefully take care of my sweetie for the rest of his life. 

Peace and Love to all of you!

Almost Broke my Record = 2 months no ER....

While my husband and I celebrated 7 years of the ultimate test of love; being diagnosed with this disease. Suddenly life becomes more important than all the mundane things like worrying about money, bills and so many other things that we don't much have control over. Worrying can be a waste of time when you don't have much. We made it through 7 years loving each other more and more and each and every day. We appreciate each other like nothing else and we never take each other for granted.

I'm so grateful for every day that I wake up next to him and hope to awake the same way for many years to come. Just the sound of his voice and being the good man that he is in taking care of me just makes me feel so warm and cozy inside. We watched an awesome movie on DVD Sunday night and we just had a wonderful laugh (where you look into each other eyes smiling and appreciating each other in the moment).

I have come to love Seth Rogan as an actor and writer. I read about so many who do not like him or just can't stand him but I totally disagree. I have grown to love him, he is one of my favorite actors; many say he has no talent; Hello? He was so hilarious in the "40 Year Old Virgin" and in "Knocked Up". He has this great voice too he reminds me so much of a few friends that I have had who always made me laugh my ass off no matter what. You gotta love those people in your life! He too is left handed just like me (and my honey) and I see his creativity. I didn't like a few of his films ("Pineapple Express" and "Zack and Miri make a Porno" = was way to depressing or horrid) but many of his movies have caused so much laughter in my hard times of going through this horrid thing called cancer. My honey and I have watched quite a few in the hospital and at home while taking care of me.

Well the one we watched was one of his new films "Observe and Report" on Sunday night. Most would be highly offended by this movie but I wasn't in the least and saw it for the comedy and sense of humor it brought me! My honey and I both have the same exact sense of humor and that's one thing that makes him my other half. We laughed so hard together on Sunday and it really made me feel stronger, happy, in such a great mood and to be quite honest, I have not been feeling so strong lately. This last chemo treatment almost made me feel as if I was going to die and I don't like that feeling at all. I like laughing and then having hope that I can beat this! I'm seriously thinking that I don't need the chemo and that I'm going to get stronger with my diet. Hell, maybe even contact some real Cancer doctors who have cured cancer. I will document all of this here.

The Clearity Foundation did in fact test my tumors and I plan to talk with my doctor about all of this and to see what matches my cancer and if anything can be done. I'm currently reading about (Suzanne Summers "Knock Out") patients with Stage IV cancers that are beating it and why can't I? Why do I have to take these poisons and my doctors give up on me? I'm not giving up; I'm too hard headed. Granted I have lost quite a bit of weight and I'm struggling to put it back on. I hate having to take medications for pain; so I had been tapering on the medications.

On Tuesday, I was feeling a little better despite all of the puking that I was doing (I feel more pukey? = is that even a word?) so we decided to go to a movie together!) My honey and I needed to get out and see a movie with our little girl. I've been smoking freshly rolled joints more so lately since this has been the only way to successfully combat the extreme nausea, getting me to gain weight and to drink plenty of water; I just laugh a whole lot more in this world that sometimes makes me sad (my health). We went to see "Pirate Radio" on Tuesday afternoon and it was awesome! We had the whole theater to ourselves practically. We got some popcorn, kibble for Blue Belle, apples, and some lemonade. Since chemo its been all about trying to gain some weight on my little bony ass!

After the movie, I took some painkillers (started cramping and my back was getting really soar) and took a nap while my honey went to his favorite sports pub to watch some sports on big flat screens and to eat a real "man meal". He was able to watch some Football, Hockey, and Basketball games (all at the same time)on the flat screens at his bar. (that bar is heaven for many sports lovers!) If he needed to come home to me, it would only take him 3 minutes to make it home.

Well Tuesday night around 9pm I started having horrible pains in my abdomen and my back. I just laid there on the couch moaning and groaning from the pain which in turn scared the crap out out of my animals; oh they were very concerned about me and poor Blue Belle laid right by my side. I even crawled into bed as she and Tonto followed me up the stairs in their own ways. This pain started pretty slow at first with a pain level of 6, and then it just got progressively worse. Then it hit a 10 and it really scared the living crap out of me; I thought my intestines were bursting and that I was going to die. I then started projective vomiting like crazy. I was also behind in taking my pain medications (I thought it might be nice to wean myself off of them so I didn't any for most of the day = just the 2 I took earlier). I was seriously mistaken when the blunt (as if my intestines were being stabbed with a blunt object) pains started. I called my honey and told him how much pain I was in and I could barely speak because the pain jabs were so severe; it took my breath everytime. I was scared and apparently he was too.

I cried and cried; I was so scared and my honey rushed to my side whenever these pains started. He held me in his arms and rubbed my shoulders and back to help alleviate the pain that I was in. I was also having a full blown anxiety attack from this fear so I had to pop an Ativan which totally helped calm me down (well so did my beautiful Blue Belle) within 15 minutes. My intestines were hurting so bad that it felt as if my intestines were about to rupture and just breathing made it even more painful. I had tried to smoke some pot in order to help with the pain and the extreme nausea and it did help just a little; mostly with the nausea and dry heaves. I had been puking just earlier (right before he came home) and I still had some dry heaves. The pot really helped with those but the pain was still incredibly severe. I was at least thankful the dry heaves were gone because those really intensified the abdominal pain. I almost felt as if I needed to be unconscious because this pain was so horrid.

I tried not to be so loud but I could not control the moaning which was almost like screaming (I didn't want to worry my neighbors so the moaning continued) because on a scale of 1-10, this pain was an absolute 10. Oh god did I want to just let it out and scream at the top of my lungs! I knew that I wasn't blocked but we dialed 911, anyway. What if something serious is happening? We got to the hospital and it was nice that they were able to use my pic lines to give me medication and fluids which I was very low on. It seemed they had to give me pain medication every 30 minutes because the pain so horrid. It was worse than childbirth without a doubt. I really thought my intestines were going to rupture; uhhggg. ouch!

They X-rayed me and I think may have called my doctor but they did release me and told me I had a severe kidney/bladder UTI infection and to take the Cipro twice a day and to make sure I am on top of it with the pain medications = don't forget to take them!. I was behind and the doctor kind of got mad at me for trying to get off of the pain medications especially since I had been suffering in pain. The doctor explained to me that I still have lots of scar tissue that is healing and in the process can be quite painful for digesting any food. Yeah that's true; I still hurt quite a bit just from digesting. Now it seems that I am getting horrible heart burn and can barely keep food down. I don't always get gas; but when I do; its totally like a celebration. I never hold in a good fart anymore and am quite proud of myself when I do get to rip one! But this is like gas in the wrong area of the body, I'm burping like crazy.

Here is the headshot I sent to Therapy Dog International for her Identification Card. What do you think?

We were released from the hospital at about 3:30am and both my honey and I crashed hard. The next day (Wednesday) was pretty hard on me and I spent most of the day in bed and doing lots of laundry. I can't just sleep my life away; I try my best to get as much done as I can and even completed a little reminder of when to take medications with times and everything so I don't overdose (I write down everything I eat, take, or drink). I'm contacting the nutritionist to see about gaining more weight without the TPN. I also hope to contact some of the doctors that Suzanne Summers wrote about.

These last couple of days out of the hospital have been focused on pain control and trying to get me to eat as much as possible and to drink lots of water. It's been some rainy cold days for getting outside; so I've been focused on cleaning the house and having a blast grooming Blue Belle. I picked up her paperwork from the vet and just mailed in the last of her paperwork to "Therapy Dog International". My dream of helping others heal will be coming true in the next few weeks. She won't be officially certified for working until after January, but I do plan to have her working for Furry Friends here in San Jose.

For now, Miss Blue Belle has been providing me and my honey the best therapy we could possibly ask for. She makes us so proud because everywhere we seem to take her; we are getting stopped by others who must get a chance to at least love on her. It feels so good to share my wonderful dog and to see others smile when they see how cute she is. Peace and Love to all!

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!)