My Beach Cruiser and the fun we had....

Well Saturday turned out to be an awesome day to go for a bike ride with my honey. It felt so incredibly fabulous to be riding my beach cruiser with him finally after all these months of having the gorgeous bike parked in my garage! We finally got to go on a bike ride together!)

It was about noon-time on Saturday (we got to sleep in) and I still had another hour to be hooked up to that feeding thing. I even made him his favorite breakfast of tots, bacon, and eggs over easy!) We got everything ready to go for our bike ride (a backpack with water, frisbees, and the camera) and then by 1:15 after the TPN had been disconnected from me; we got our bikes together with Blue Belle in hand and went on our bike ride to Mary Jane Park which is about 8 or so blocks from our home.

There are a bunch of little shortcuts to take to get to this park. Since my bike is more or less an old lady bike; only has 3 speeds and works comfortably going very, very slow or even somewhat fast; I was better able to lead Miss Blue Belle since she got tired and had to go slow often. I don't like to go fast anyway; just cruise and enjoy the ride! Miss Blue Belle is out of shape and I had to slow down quite a bit for her as she ran out of breath a few times. No worries, I plan to get this girl in shape in no time. We weren't able to make it to her favorite pet store this weekend, but will be able to tomorrow after Chemo.

Seeing me have a blast riding on my beautiful cruiser got my husband thinking about getting himself a nice beach cruiser for himself. I wasn't in the least amount of pain riding my bike because it has such a nice cushy seat for my bony ass and plenty of padding so that I never got those horrid ass pains from riding on one of those freaky triangle shaped seats that are actually excellent at creating horrid hemorrhoid pain for those who are riding with slow pokes such as myself.

I know I have been told several times by several different people that there are seats for dudes and seats for women that are made specifically for their genital parts and sitting on the seat which does not look or feel all that comfortable. Why concentrate on those parts when you are actually sitting on your ass? I don't know for sure if this is true or not but several people have told me this. The seats are shaped so weird like a triangle and then the inside of the triangle is missing. How is this enough to cover someone's ass? I don't get it. I see them as potential genital mutilation seats. I know, I have ridden on both of our old bikes (they both have the genital mutilation seats) to know they don't make you feel good sitting on them for too long. I would often get butthole pains from sitting on those seats for too long and sometimes rashes on my ass from sitting on the seat for so long. So far, Beach Cruisers rock and from what my honey tells me might be a bit similar to what many Harley riders do as they roll up to stop lights. The trick is that you can ride as slow as you possible can or would like to with out tipping over.

After our ride to Mary Jane Park, we rode up to the local pub for a beer. It was just a few blocks away. I had my first beer in over a month (maybe longer); it was a Guiness which tends to be better on my stomach and also very good for my blood since it is such a dark beer. We mostly just sat in the bar, had some good conversation with several of the locals and mostly just had a good time together. It was so nice to finally be back there again and to see many whom I haven't seen in months. I was finally out of the house and the two of us were out having fun together rather than heading to the hospital for a treatment or a blood test; we were having fun and we didn't drive! What a miracle this weekend has been!

Well we got home and then got ready to go out to eat at Aqui in Downtown Campbell. We both go the Blackened Mahi Mahi with chopped Mangos and cucumber and mashed sweet potatoes. I ate maybe a third of my meal as it was the first real meal I have had in over a month. I made sure I chewed everything as good as possible and drank plenty of water. What an awesome dinner! Also, most often very beautiful old cars are parked in downtown Campbell so as usual we always have to photograph those pretty cars.

Well when I got home the pain started to get out of control so I took a Percocet to control the pain for right then and it worked a little bit until the muscle spasms started; then I had to take an Ativan. These were pretty bad muscle spasms and eventually they passed. See I only have to deal with the pain for part of the day or evening; it's not constant as it used to be. I still suffer in pain (mostly in the evening and when I wake up) but at least I don't have to do something constantly. anymore. I'm improving slowly or at least I hope that I am. Sometimes I just don't know for sure.

Well today we had planned to ride our bikes to the Farmer's Market and had all intentions of doing so. Well we woke up in time and were able to make it to the hospital (Lab) for a blood draw and urine analysis just prior to my chemo tomorrow morning at 9am. I had to warn the ladies as usual since I didn't recognize anyone today that I am a very hard stick! Be prepared and get me a butterfly needle!) One woman walked up to me very sympathetically and told me she wished me the best in my battle. She knew I had been fighting for many years and I plan to fight for many more I told her! My honey came up right behind me as she was bandaging me up (my she was fast!) and kissed my forehead. He was so loving towards me and made me so proud to have this handsome man waiting for me here. Then I had to do the urine thingy and we were done!)

Well we got home from the hospital and got ready to get me off the feeding machine an hour early. After getting off the TPN we just drove to the Farmer's Market to meet up with some of Jimmy's friends from the local pub. The Market closes at 1pm and we would not have made it in time had we rode the bikes. (yes we overslept and got our day started rather late!) but we slept in together!) We got to the market and got mostly fruit; I didn't get my usual Vegan and Gluten Free Rasberry, Poppyseed, Creamcheese Muffin, but I did get a Blue Berry Cream Cheese Muffin for tomorrow! Yes, I still get to eat some of the fattening fun things as long as I chew it carefully and mindfully and drink plenty of water. Some stool softeners won't hurt either!)

We stopped and had lunch at this Irish Bar and watched part of the Packer Game with Jimmy's sweet friends; I had a kid's pasta portion which was very simple for me to eat and caused my tummy hardly any pains. The Packers were kicking ass so my hubby was happy and I was happy too! We were spending another fun day together! We even went to a few bike shops to look at cruisers for my honey. He had spent hours on the internet the night before checking out Beach Cruisers; so this will be fun; having him test and ride the cruisers to see the difference and maybe even the excitement of getting one. They are handmade here in the United States; so here's to helping out our local economy!)

After wards, we headed back home and I took my neighbor's daughter out for a cruise on the bikes. She rode her little bike and is still learning how to ride. She can't turn for some reason and it's hard for me to tell her how to turn. Now she is 14 years old, has had brain surgery for Cancer and is a 10 year survivor now; that she just celebrated a clear scan. I have no idea why it is so hard but I am unable to teach her how to look where she would like to go; instead she looks at where she doesn't want to go and sometimes she has these little crashes in fear. They don't look so pleasant but I'm being very patient with her. I try to show her how easy it is on my bike just by riding around and still she does the same thing, she rides straight and then when she needs to turn; she slams on the brakes and nearly crashes. I tried to keep telling her to look where she would like to go and instead she keeps on looking where she wants to crash and does just that? It was a little frustrating and I'm hoping she gains some more trust in me teaching her to ride. She did make some tiny baby steps today and almost went in a complete circle at the church parking lot (it was mostly empty).

My poor honey can't really ride that well with me since the stupid bike seat hurts his ass (it's not at all comfy) and I go too slow. He has the mountain bike that requires speed; it's not at all for cruising. No matter what; I'm getting stronger and stronger this week and will work on riding my bike since I am doing much better at this than walking. Here's to more healing and getting stronger!)

Maybe blocked again and more pain...

Last night was my first night to sleep in my own bed and I thought for sure that I would sleep like a baby. I didn't fart at all the day or even throughout the evening or even the day that I left the hospital and I was starting to feel the pain of what could be a small abdominal blockage with pain that tipped the scale of 10 (on a scale of 1-10) with sharp, singes just going through my heart, my stomach and even my lower abdomen all through out the evening.

I really thought I was going to die and I kept contemplating; should we go to the emergency room? My honey was totally on my side and trying to comfort me in any way that he could. We both didn't want to go back but I had a feeling that it might have been from me coming off the pain pump; stronger intravenous medicine versus pills (which perhaps my intestines were not quite absorbing them). They were indeed not strong enough for amount of pain that I was in.

When ever I would try to lie down in bed to try to sleep the pressure in my abdomen would make it difficult to breathe and it felt as if I had rolling pain pain singes that kept getting worse as the night progressed. I kept having to get up to go to the bathroom many times through out the night to go pee and each time I was proud of myself that each time I remembered to pick up my heavy backpack of food instead of getting hung up and pulling IV cords.

We got into a very strict schedule of doubling up on the Percocets and then I would take an Ativan in order to be ahead of these violent outbursts of pain.

I really hated that I was keeping my husband up at night too but he was right there by my side no matter what; not even irritated at me for keeping him up. I cried and cried and worried about the outcome of all of this; will I survive this? I sure hope so and will try my very best to beat this. I feel that light inside me called a will and so much to live for; I am going to be as strong as I can and if I have to yell and scream from the extreme pain; then so be it. It helped relieve the stress of the pain in my abdomen.

In all, Wednesday night was just a long night of waking up throughout the night and each time having to walk around carrying my heavy backpack of food all night long. I'm in a constant confusion state of when I am hooked up to an IV and when I am not. At least I have the brains to check before getting up each time whether I am hooked up or not. LOL

The next morning my husband decided to call in sick in order to take care of me. We did a couple of Dilaudid and an Ativan that knocked me on my ass until noon which was nice. I needed to be knocked out from this horrible pain. My husband has been so totally stessed from my pains and I feel like total shit for stressing him out; sometimes I feel like he deserves so much better than this but he always insists that we will walk hand in hand through this together and no other way. He is in love with me no matter what; it's just a very stressful time right now of worrying whether I will survive in the coming days.

At noon, it was finally time for me to be unhooked from the heavy backpack of my TPN. The freedom of not being hooked up rocks and it may only be 6 hours of freedom; but that's only 6 hours of being able to walk around without having to carry a heavy backpack or a try to make the most of an IV line; sometimes I have to plug myself back into the pump when the TPN is on but during those 6 hours of freedom = no IVs!).

My very first day at home has not been easy and while I did take a suppository; it didn't totally help with this block; I mostly had to cut out food; yesterday I had eaten a small amount of Chicken Soup with rice, a few pretzels and a cut up apple with out the skins; today only 1 Yoplait yogurt and 0 appetite. I have been having hot flashes all throughout the day; I know it's from the TPN pump. At least with out my appetite I am at least getting some nutrition. It's scary that surviving this can be so hard. I wish I could eat and not have to worry about how everything can get through my system.

I just knew that I was facing going back into the hospital and hoping and praying that I could tough out this pain and hopefully be able to improve and stay home. I stayed drugged up for most of the day and mostly just watched trashed TV in drugged state; it was either that or doubled up in severe pain. I did get to go on a walk outside with Blue Belle trying to get some air out of my intestines and hopefully getting things woken up and working again. I walked up the block to mail some letters and cards, then walked around the pool area, got to hang with my neighbor's daughter for just a few minutes; then the pain started to get rough and I headed back home for more pills.

When I got home and doubled up some more on Percocets and a few hours later; still not working so I took some more Dilaudid and it kind of worked and I mostly stayed on the couch mostly feeling doped up until 9pm.

My sincere apologies for posting this painful looking photograph but it really is the realities of what I am going through. You can just see the pain in my face as I am crying. At this point, I really had no idea what was even going on inside my body and why I am hurting so much. My husband was out enjoying a beer with some friends when I called him and told him that we need to dial 911. I knew in my heart something was indeed wrong.

He got home and did the usual drill of locking out the animals so that they wouldn't try to follow me or exscape. I was so incredibly miserable from the pain, crying and screaming (they were even able to insert an IV and give me a shot of morphine which helped tremendously) once I got inside the hospital I was ignored much of the time. I was that crazy screaming woman that annoyed everyone within 20-25 ft? I don't know how far my voice was traveling but I couldn't help it. As far as they were concerned; I was belonging to a psychotic hospital unit and just needed a padded cell all to myself. I was so miserable in pain. I was next to another woman who was taking my screaming quite well. I tried not to scream but the pain level was too much to even handle. I honestly thought that my intestine was going to burst and the pain would just come in waves. I had to get ahead on pain medication before I was even comfortable.

My husband was totally pissed that I was let out of the hospital not able to poo or fart and I felt it was partly my fault for wanting to go home so bad. We had our warning signs when I was just walking out of the hospital and then the excrutiating pain that I had been experiencing.

To Be Continued.....

Pee Bag Be Gone!)

This may be a short post but it is everything that I experienced on this very important day!) It started as a day of unknown realities as any surgery date could be; I just wanted my birthday wish to come true; "to remove this dam piss bag!".

We were told to arrive at 1pm at the "Admission" office, then a few minutes of waiting inside the Radiation department and then an escort to the back where the Interventional Radiology department was located. This is where my surgery would take place. My honey was with me waiting for the first 2 (they were behind) and half hours and we just sat there nervously talking about our love for one another and our plans once the piss bag is removed. Oh GOD do we have plans for living with out the piss bag!

My honey just sat there so handsomely as I wondered why this wonderful man is standing by my side every step of the way. "GOD am I so turned on by this wonderful man!". Check out his handsomeness!) He is more handsome than any George Clooney, Johny Depp, or even Brad Pitt could ever be. As far as I'm concerned, he is the best kind of man there is; one with compassion and most of all Love.

What really got me today is how he told that one of his best friends was working on writing a song about me and how the first few lines made him tear up. How romantic!)

Anyway this is a photo of him talking to the doctor who would then be performing my "Internalization of N. Stint". (That's how I saw it on the big surgery board schedule) He asked just the right questions and even stressed how I just turned 39 on Sunday and that I haven't taken a shower in over 2 months. It was cool how he got to the doctor that way in putting a face and compassion for me. I think the doctor was determined to get that stint through my ureter at this point.

At just past 3:30pm, I was wheeled into surgery as he kissed me on the lips and then the forehead, confessed all of love for me and me for him. We always do this no matter what for any surgery I have. I was so worried during the entire 3 hour surgery (it was supposed to only take 1 hour) that I might have to come home with the stupid bag. I was so thankful to have such a determined team of professionals working to make my dream a reality!) I kept thanking them and telling them sorry every time that I jumped in pain (I tried so hard not to). They were all so nice, attentive, and very compassionate towards me. They knew my battle well and knew I was so deserving of somewhat of normal life (with out a bag).

I was in pretty bad pain through out and almost got sick from the pain. The nice lady kept trying to give me worthless medication for the pain which would last maybe 1-2 minutes and then the pain would come back with a vengeance. I would bite my left hand (right hand had the IV) just to deal with the pain. I just wanted so bad to get rid of the piss bag and was more than willing to go through extreme pain just for this to happen! It was not an easy surgery and I was in pain and still am in a little amount of pain even with pain medications (Percocet, Benadryl).

I was so happy when the surgery was finally a success! What a freaking relief! Check me out with my legs and arms up to show no more leg bag!) My honey was there waiting when I got out of that surgery room with a camera in hand!) NO MORE PISS BAG!) No more tubes in my back irritating the living shit out of me!) I was so incredibly happy despite the pain I was feeling in my back and that feeling of having to go pee; hell some of the pain I was feeling was that I really needed to go pee. My pee hole just ached!

Once the IV was removed, I sat for a few minutes and then I was helped into a wheelchair just 10-15 minutes after the surgery. My honey and I were so happy as he wheeled me out to the hospital entrance, ran and got the truck and then helped me inside. I was still in a great deal of pain, but it didn't matter at all!) I no longer have a piss bag to deal with!) I called as many friends as I could and of course my father to tell him the good news. It was too late to call my mother and my brother who no longer has a cell phone (can't contact him unless he's at work).

Once I got home, I raced for the toilet to let out my first pee!) It was good long burning one (like having a bladder infection), was pretty bloody but at least I am peeing just one way. It will clear up and I have plenty of cranberry juice to boot!) The pain in my back and of course pee hole was a bit too much for me to bear so my honey ran downstairs and grabbed me 2 Percocets since the pain level was at 9. I could barely lie down or even sit up. I was confused as I couldn't find any comfortable way to lie down, stand up, or even sit up.

Finally the pain subsided enough for me to lie down and rest for a few hours before posting this entry. Now our Adventures in healing really begin!) What an awesome day!)

Another Bladder Infection & more....

I had a nice day on Saturday as I got to hang out with my neighbor Amanda as we took Miss Blue Belle for her bath. Tonto needed a bath really bad as well and hasn't had one since Blue Belle's birthday (February 21st). That's a stinky cat and he sure knows it!

Well now, I am now up to 4 hours of being able to go out in public with out feeling too much pain. It seems that when I stand up for an extended amount of time; I can kind of feel it in my intestines in that they are not healed just yet. As I was getting at; if I do stand for a period of time; particularly standing in line; I start to feel as if my insides are about to come right out of me or that they feel as if they are falling down into a pile right inside my abdomen. It's kind of pressure sort of pain; that's the best that I can describe it. I'm only taking 1 pain pill per day and utilizing cannabis when needed (anal and intestinal spasms which usually occur at night).

It's scary to feel this kind of pain; but I'm getting more and more used to it. In all honesty, I have been a little depressed and worried about my body not healing or getting back to work. I really want my life to be normal so much! I do love the time that I am spending with my honey (that is such a gift!) as he takes such good care of me. He always seems to bring me right back up when I feel my weakest. I am his princess and he sure makes me feel that way!) That kind of support is essential for a quality of life with cancer. He makes all the pain that I suffer from not so bad and all the more worth fighting for my life; I'm alive and that's the most important thing here.

To get back to my afternoon with Amanda, we first stopped to eat some lunch at a sandwich shop and I ate a small amount of plain turkey sandwich. Then we took Miss Blue into Pet Food Express for a self service Doggie wash. Everyone in the store knows her name; and we arrive each time; it's almost like a grand entrance on the Red Carpet with the exception of flashes and exposures going off. Everyone that works at this store usually greets Miss Blue Belle as we walk in. "Hi Blue Belle!" Each time, she walks right up to the counter, with her ears back and tail wagging for a treat.

As I was paying for my tokens; the nice girl whom I have known there for 3 years; then asked me if I had had knee surgery. I was so happy to actually brag about what a trooper I am for surviving 5 major abdominal surgeries and being a 6 and half year survivor of the deadliest of all female cancers. She put up her hand high to slap my hand and Said "great Job Sister!". It made me and Amanda feel great now that she is going on 10 years! All this time; she had no idea and all the times I have been in there coming in every month or so for a bath for the last couple of years.

We then took Miss Blue Belle over to the tubs and washed her carefully and then dried her off which took most of the time. There were a few other dogs getting their baths as well; some Welsh Corgies, and a Golden Retriever. Blue Belle was relieved once we finished drying her and got to take her shopping for some new nail trimming treats. Her and Tonto both get special, special treats when they allow me to trim their nails. She loves to shop especially if she knows that she is getting things out of it!)

We were about to head to more shopping when my intestines started to churn a little and started to feel as if they were falling or pulling downward (it's really weird) and my bottom ached. I was better once we got to the car but it still hurt. On the way back we stopped for about 10 minutes to let Miss Blue Belle play some frisbee and work off some of those fattening treats she got at the shop. After the quick romp, I took Amanda home and then the diarrhea started and the bladder infection progressively got worse as the evening wore on.

I decided to rest for the rest of the evening since standing up and doing things was causing me pain. As my honey and I were watching TV together; Tonto was up to his usual tricks and jealously that he didn't get a bath. I could tell that he's been feeling like a dirtbag but we just couldn't bring bring him with us because we wanted to do some shopping (can't leave him in the car) so I figured I could just wash him in the sink at home. Well I didn't get to do that and of course he didn't like that idea too much either.

He walked around the living room and chatted to us then started lick himself very loudly. When we raved about Blue Belle's bath on Saturday night and how beautiful she looked, how good she smelled; I honestly think that got to the cat. He would scoul over at me as we raved about Blue Belle's pretty fur. It was like really dirty looks; like "go to hell!". While we were watching a movie, he walked right over to the the front of the TV, sat there, lifted his leg way up and just licked his butt for about 15 minutes straight. It was kinda loud too (almost slurping); I could hear his licking. My husband and I laughed and laughed as I told him why he was doing this. Tonto finally got over it and jumped up into his kitty castle, he scowled at us some more and then he fell asleep.

I was still in a great deal of pain so I emailed my doctor and I even left a message about the infection (it was Saturday night). All night long the infection irritated me. I tried literally dozens of times; crawling into bed and then jumping out of bed to go to the bathroom. I took some Percocet (1 every 6 hours = 2 for the whole night) and 1 Klonopin when the spasms (& diarrhea) started to get bad. I even threw up from the violence of my intestines. It really felt like violence because it was so darned painful. I tried not to wake up my honey and worry him but he couldn't help but notice. I started bleeding from the bladder infection as I tried to pee and a little bit of blood would come out. How irritating. I tried to lie down and each time I did it felt like I had to pee; I would go and a mixture of pee and blood drops would come out and it burned so bad; I almost fell off the toilet.

I finally had enough and then I then went downstairs and rolled myself a joint. I couldn't take it anymore. The cannabis helped so much that I drank a mixture of 2 glasses of water and cranberry juice. I sat up for a few minutes longer and then went to bed. I slept for a few hours and then called the Advice Nurse the next morning when I didn't get any response from my doctor.

I was able to get an appointment later on that evening (6:20pm) and I had also ran out of pain medications. I did have enough to stay drugged up most of the day (1 Percocet) on Sunday but at least I was painfree. Since I had some time, I washed Tonto. He didn't like being washed in the kitchen sink, but once he was clean; he was happy again.

I went to see a doctor and the nurse that brought me back was inspired by me and all that I had been going through. (yes, I told her everything) She couldn't believe that I was still upbeat despite the pain I was in. I told her; that's just how important life is to me. The pain doesn't matter, but still needs to be attended to if possible. I can live with it; but it's hard.

The doctor came in a few minutes later and checked out my breathing and also tapped my back to see if it was painful in certain areas. I told her pretty much everything that I was going through. She looked at me and I could see the compassion in her eyes as I told her about the pain that I was suffering. She gave me a refill for more Percocets (finally finished the bottle) and the same Antibiotic that I had been on to help clear up my bladder infection.

When I got home; my neighbors had brought over a wonderful grilled Salmon, home made mashed potatoes and some steamed asparagus (actually not sure how she cooked it but damn was it good!) with Hollandaise sauce. What a blessing to have such thoughtful caring, wonderful neighbors! ) That term "Love thy Neighbor" applies. I was able to eat an excellent meal and take my much needed antibiotic (which required that I take it with food).

We then watched "The Curious Case of Benjamin Button". My honey had cleaned the litter box just earlier and while we were watching the movie; the box all of a sudden reaked. It was so freaking stinky. I had guessed that Tonto didn't want to get his paws dirty so he just didn't cover his dootie. I was right; we had to cover it up, spray the box and light up an incence; we laughed some and then continued on with the movie. It was indeed an interesting movie which does require attention. It's very long, but it was enjoyable!

I did get some more diarrhea later that night but I was able to control my pain much better. Well because of my infection; we decided not to do our little romantic get away. Instead; we are redoing the floors! Getting rid of the icky carpet! We have a good friend who will be helping us out! That's one thing about this disease is that you really get to know who your true friends are and it makes the family much closer. I think the my predicament has changed many lives; and I hope it inspires others to not take life for granted and appreciate the small things in life. OK enough with that! Peace and Love to all!

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!)

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!)