Pain and Fear of Pill Killers.....

Here is an awesome photo I took of Blue Belle last night after her bike ride / run. She was pretty winded but oh how beautiful she is just sitting there. Some don't even have to try to be pretty at all!

I have to admit that I'm really, really scared of using painkillers when I am in pain. Every time that I take one, I always feel so guilty. I'm so scared shitless of becoming addicted and to have to depend on using them daily and in turn this really scares the living shit of out me. For one, I am always it seems in intense pain after taking a piss from the rod in my right ureter and my doctor has told me; make sure you take something for pain for that; so I do and it works but I still can't help feeling guilty taking them. I'm also getting severe abdominal cramping and exceptionally painful anal spasms as part of the side effects of this chemo. It's so not pleasant and I often think of shifting that pain on to someone else who really deserves it; like those rich overly insured politicians who are so against reforming the broken health care system so that they at least understand what it is like to be in such pain and suffering. Many just don't understand and it would be cool if they did.

Sometimes I have to take several painkillers each day in order to handle all the different pain issues that I have. You can just imagine the guilt that I have after doing all of that . I hope that I heal normally and it seems these painkillers will just make things worse for me because they are more chemicals being added to my body. What scares me most is are they chemicals that my cancer will like or chemicals that might be able to kill them? They make me so loopy and stupid sometimes too and I really hate that. Is it normal for me to have these feelings and to wish I could just take the pain and not take anything for it? I feel like such a wimp when I eventually succumb and have to take something for the pain.

At least with my pot, I can still keep my sanity and am able to talk about all kinds of interesting things. Oh the hilarious creative conversations I have had! It's almost like it expands my mind in some way; especially creatively. I appreciate music all the more and these last two days it has helped me drink more than I know I would have; I was so super thirsty after I smoked my little joint. Too bad its not strong enough for the severe pains that I get but I can mix it with any of the other drugs and not have to worry about over dosing. In fact I feel that in combination with the other drugs such a Percocet and Morphine (it helps get rid of that nasty taste in my mouth); it the right mixture of pain free.

They are working right now for the pain and I'm so glad that my intestines might soon be healing. Well, it was just a month ago that my intestines were not absorbing pain killers at all and I had to be hospitalized for that. On top of all of that, I had chemo on Sunday and I still don't have an appetite at all; I really want one so bad. I have just 9 more lbs to gain until we can think about removing the feeding apparatus (TPN). Yesterday I barely ate a banana and tried my very best to eat a Chicken Pot Pie for dinner.

I had to go to the drug store to get more gloves for my honey and they also had generic Pedialyte on sale so I got one just for chemo since I knew that I would be having trouble drinking and keeping myself well hydrated. Have been surviving on this all day today and just rolled myself a nice joint to enjoy tonight in hopes that it will finally make me hungry. Can you imagine not having the energy to even enjoy a good bong hit? That's the way it has been yesterday and even for part of today.

I slept for a good part of the day yesterday and even went to the pharmacy to try to pick up some medications. They didn't have the Zofran for my nausea; just some anti-diarrhea stuff. Miss Blue Belle went with me proudly in her pretty new vest and of course she brought all kinds of smiles with her as some of the patients got to love on her. I can't help but share her warmth and love. There was a really cool and sweet lady at the pharmacy who was waiting in line and she told me that I should not feel guilty for having to take medication for pain and to think of it as insulin. I can't do that still but she finally got off of obituates eventually after many years of having to take Vicodin, Percocets, and even morphine for her chronic pain. I hope to be there one day!

I did email my doctor because for one, they had forgotten that my CA125 needs to be monitored while I am on chemo; I mean how else are we going to know if the chemo is working? Well also about the Zofran too. I will definitely need it for these treatments and am scheduled to see him on the 4th. Well my CA125 will be scheduled every 3 weeks which will help. I am starting to doubt that I can do this chemo every single week. I'm kind of ready for a little break. My husband is worried about me and is afraid if the cancer doesn't kill me; the chemo will. He could be right but I still have an inner strength but those days after the chemo; I do wonder where it is.

Last night before my intravenous feeding hook up; I did take my beautiful cruiser out and around the block with Miss Blue Belle. This is working out so well because I don't have the energy to walk that far with out my intestines feeling like they are falling out of my body. What a shitty feeling that is; no pun intended but that's what eventually happens if I am on my feet too long. I hope the healing will happen soon. Well anyway this is crappy photo that I took while riding my bike (that was very dangerous for me to do), but I did it anyway. She's running along side me getting some great exercise.


I am thinking of going to Whole Foods today for some Aloe Vera juice so that maybe that can help heal my broken and twisted intestines. I do need a miracle. More updates to come!

Happy 39th to me....

Well President Obama did tell me that I can celebrate my birthday all week long (he said we would be celebrating Flag Day all week)! I love my President! Well my birthday is on Flag Day and what a great birthday it was for me! I couldn't believe all the wonderful friends who wished me Happy Birthday on Facebook, then those who took the time to email me, the phone calls from all over, and of course all the friends who stopped by!) Thank you all!

I did get to have that Pizza Party that I dreamed of having all thanks to my good friend Nikki!)

Now the day did not start off quite so easy because I did suffer in intense pain several times in the beginning of the day, but I did manage the pain quite well with minimal medications (Vicodin and Ativan) and even used some pot the rest of day to manage the nausea and it did indeed kept me munching through out the day (in hopes that I am gaining some weight). (that's why we didn't get to the Farmer's Market till later) During the morning and then later in the evening the muscle spasms were pretty intense. My trusty vaporizer helped me so much in controlling the violent spasms (primarily the ones where vomiting was involved).

I started my day rather late, my brother and I didn't make it to the Farmer's Market until shortly before 1pm. We grabbed some fresh garlic, basil, bell peppers (red & green), red onions and what ever we could get then Nikki got all the rest. She got several choices of crusts, (regular cheese crusts, pita bread, Naan bread, tortilla, and plain crusts) cheeses (mozzarella, parmesan, ,& asiago) spaghetti sauce, garlic sauce, mushrooms, and tomatoes. She had stopped by an awesome store (Lunardi's) close by to her house near the Peninsula. She even picked up a beautiful decorated Carrot Cake (my favorite) birthday cake.

Here we are cutting up all the toppings and getting everything ready for the pizza party to start!

The adults who were well aware and wanted to got to use my very special secret sauce that I had made 2 weeks ago (with cannabis). Me and Nikki cut up all of the toppings and then placed them in different cups for all to choose from when making their own personal pizza. It was a blast to do!

After I had my pizza it was at least several hours that I did not have pains (it could have been because of ingesting the cannabis?) but I did get to spend some good quality time with friends and family while everyone just loved the pizza party idea!)

For those Adults who tried pizza with my special secret sauce, it was very, very mild but mostly just gave a small body rush of feel good energy. (very, very weak). Yes, we are in California and cannabis is not at all a dangerous plant for those who use it recreationally as consenting adults. So yes, there was plenty of laughter at my party!)

It was such peaceful, relaxing, and most of all wonderful party!) Now it wasn't a loud party like most, just very peaceful and the house was full of love. We even played some of my old lady music!) I usually don't have parties for my birthday and this was my first ever real birthday party! Can you believe that? OK many in the past but not like this.

My next door neighbors even stopped by for a few just to check out our new floor. The party was a blast. I had no physical pain for at least 6 hours!) during the party. I know it had to be my secret sauce because my intestines had calmed down completely (it was like they were stoned!). I got to move around and even go down to the hot tub to soak my feet with my friend and her son. Oh how I was thinking "GOD, please let me be able to soak in the hot tub again!" I really do hope that I can get rid of this nephostomy bag! I didn't mention the burning and itching on my back from the tube going right to my kidney? Well yes, this is also happening as I'm having fun too!) It's not so bad, but it would be great to be able to soak in that tub or swim in that pool! We are just changing the dressing on my back practically daily since the dressing from Thursday's changing came off on Friday, my tube has been exposed so it burns and it's leaking a little.

The spasms (anal and stomach?) did return shortly after midnight (vomiting and some diarrhea) and I was able to deal with them. I got through it!) Now they sounded a little scary to my brother but my honey had it covered. He got all that I needed to deal with them (painful spasms) including a glass of water to go with my anti anxiety drug (Klonopin). I actually remembered to take a Klonopin (well technically it was the spasm that helped me remember) and I was able to go right to sleep. My honey had run downstairs to go grab it and yes, he asked me "what can I get you honey?" !)

Now on for more adventures with my brother and father and my husband! We are getting the right equipment to groom my lovely girl so expect some pretty show dog photos in my upcoming posts!)

Last Day Hopefully with the Nephostomy Bag...Let's Pray!

Well last night was one long night indeed. I had diarrhea all night long and I might as well have just slept on the toilet. In fact I tried to at one point. My poor bum burned so intensively; I used the "Sitz Bath" that my honey got me each time. It provided some relief but once I got off of it; it felt like I had to go all over again. It was quite disgusting having to pour poo from the hot water into the toilet, clean it out and start all over again. I guess this is my experience of changing diapers, huh?

I took painkillers, anti anxiety pills throughout the hours and even anti diarrhea medication and it seemed that nothing helped. I could not get to sleep because my intestines seemed to be in overdrive. They were involuntarily moving around everything in my system. They couldn't stop moving things around and outside of my body. It was totally miserable and finally at 5am I had enough so I took some Vicodan and an Ativan and was konked out until 1pm today. I didn't have any wierd dreams or hallucinate; just slept soundly and wonderfully. Wow! I cherish those moments of not having pain whether I am awake or I am sleeping soundly!)

I decided today that I will not eat anything and just clean out my system (except for breakfast - must have food with Antibiotic). The diarrhea has continued today and is still going on. My poor bum is still burning and just doesn't want to hack any more stomach acid coming out of it; that's exactly what it feels like. Anything I eat spends maybe 1/2 an hour in my system anyway and then it immediately comes right out; so what's the use? I can just eat my Whole Food's Gummy vitamins. No I definitely not doing this to loose any weight; I don't need to loose any more weight but I don't have much of a choice right now. It is such a pain in the ass to eat anything right now; no pun intended!)

I did eat some Cream of Wheat with my Antibiotic this morning and that too came out shortly after. Hopefully the Antibiotic is able to work since my intestines are on the painful projectile functions?

It is an incredibly hot day today and I know I will be spending most of the day inside. I can't hack 100+ degree weather and "the Boogie on the Bayou" is totally out of the question for us right now. I can't be more than 5ft away from a toilet for pretty much all day long unless I don't mind walking around in hershey shorts. It's feeling so miserable but at least I am going; I have to look at the bright side, I could be going in a bag.

It sure doesn't feel good as I even have stomach stomach acids coming out and causing further pain. I can't think of anything that can help me with this pain right now. The Percocets, the Vicodin; all seem to do nothing. Will be trying some bong hits soon. I kind of feel that GOD thinks I am a shitty person? Is this why I am going through all of this? Why? Yes, it could all get worse, but for now it is very, very painful and frustrating.

So enough about all this pain and suffering; here is what my life has been about even with the Cancer and Prior to the Cancer. All about having fun! Yeah it's kind of hard to have fun on the toilet, but that's not what it has been totally about. I've had lots of excitement in life over the years. Now I get to look forward to hopefully loosing this piss bag!

Here's to (snowboarding) what I have to look forward to and what gets me by each and every day (also my honey, pets, family, friends, and all those praying for me) and of course my beloved Snowboarding Addiction (it is pretty much like a drug Addiction; it's only drug I feel I have ever been completely Addicted to). There's just something about it to me that makes me feel at one with God.

I had been looking for a CD Case of all the DVDs that I have made over the years since being diagnosed. I started making them in 2003 and ever year since I have made them and I always make plenty of copies. I keep all copies in this once CD Case and it's missing. I did find some others which is great when reminiscing. I found lots of really really cool videos of me ripping it up in Oregon and Tahoe so do enjoy as I have: (I already posted this one on my Facebook page) Check out the height of air!

As I was awake in severe pain; I decided to go through another old CD Book that contained old photo back-ups and some that I had not even included in my new external drive. I also found these Oldies but goodies from Burning Man 1999 - This really was an amazing experience for me but the lame part of it all was that my honey had chosen to go to a Ted Nugent Concert instead with his buddies and a friend who had been visiting from his home town.

I was missing him the entire time (even crying myself to sleep on some nights) and I had dudes trying to hit on me (which to me was totally annoying); I stayed completely faithful to my man and even cried a few times because I missed him that much. I was so deeply in love back then and of course still am more so than ever.

Burning Man can be a bit crazy for those not used to seeing some people prance around naked, some doing all kinds of drugs (for me it was just pot or an occasional beer = nothing else for me), lots and lots of art and of course no money allowed; it's strictly bartering. You trade (I traded my skills in handwriting analysis = brought my books, and a spray water for the day = it was hot) for what you need and I really liked this concept; in fact I feel we could all do quite a bit during this recession in this manner. It's about being creative and resourceful to survive.

WARNING: Some of these photos may be offensive to some, please scroll down at your own discretion. No scary surprises! I do consider myself somewhat of an artist when it comes to photographing in that I can view and appreciate all kinds of art; it's just the beauty of the world that I tend to appreciate so much!)

After the Event; it is required that everything must go; no litter left behind; everything must be cleaned up and left as if was prior to everyone arriving. No damage to the environment allowed!

It's kind of a hippy kind of an event; Peace and Love! I did have fun and I got all kinds of photographs. What I wanted was some special photos of me for my honey and there were so many wonderful photographers there where you could really get professionally shot photos and the backgrounds were absolutely amazing; like a work of art; it was and this event has always been a Photographer's Dream!
Hope you enjoy!



I hope to post more of these once the 10 year Anniversary (for me= Not Burning Man) is official (Labor Day). I hear it's not at all the same as it once was. I paid around $60 for my ticket and we only stayed 4 days (Thursday, Friday, Saturday, and Sunday).

I also found these great photos from Gay Pride in SF in 1999. My honey and I went and he got to take photos of me posing next to some the trannies and/or Drag Queens. OK, I did dress slutty for my honey (he loved it = at least I had on some sexy shorts under that dress!),- we were so incredibly crazy for each other back then; OH GOD we are now!) but we all kind of wanted to fit in for this special event. It was so fun to play dress up!

I have had several gay room mates and I still have many, many close friends and they have all been absolutely wonderful to me. Many, just loving individuals who have been genuine. They have never given me a reason to hate them. They are just normal human beings and they are living as their heart tells them to live and I see problem with that. Follow your heart. I have a heart for them and I do Love them.

Well this was back then (Aug. 1999 - I think) We all went with my Room mates from the "New Moon House" on 1516 Guerrero Street between 26th and 27th street. The house has since been sold but it was such a wonderful community living experience for me. I had never lived like that before in my life. We recycled, composted, used some trash to make art; it was very, very cool. We had people from all the world who were staying here, some visiting, but they each brought life into the house and of course had to leave 1 item of art on that house. It was my one experience with how to live in a communal household. It was very safe and I will never forget it. I had at one time 13 room mates and no it wasn't totally crowded.

This house well is 3 stories (It's wasn't totally Victorian, but it was an old home) and I had my very own room with a beautiful bay window overlooking the tea garden. The room itself was very beautiful and I loved all the paint schemes with in the house. Each room was different. A house of artists and some misfits but in all everyone was full of heart and soul. Some room mates would even rent out closets and they were set up pretty nifty; the bed was set up in the ceiling; drawers and everything needed below; some people don't really need a whole lot to live on. It seemed most were Art Students! My old kittie Toonces grew up there and even killed every single mouse and rat that resided in that house prior to us arriving there. He was very much loved there. So here are the photos from Gay Pride 1999!



Oh Memories! Of a life once lived and then of life to be lived!) I have so much more to accomplish in this life!)

UPDATE: The bong hits worked and now I am feeling much better and drinking water and then trying to make a conscientious decision about what to eat? I am able to eat and playing it safe with Chicken and rice. Now it's getting ready for this surgery tomorrow morning. Updates on the surgery to come! Here's to getting rid of the nephostomy bag for good!)

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....