Nephostomy Surgery?

That might not be the right name for this particular surgery but that's kind of what I think it is. I'm really stoked that someone from Interventional Radiology finally called me to schedule getting rid of this dam piss bag! OK maybe it looks more like a fashion accessory here, but it definitely doesn't feel like one when I have to both stand up to pee and sit down (you know I forget about that sometimes!) It did take a while to get used to(still not totally used to it); I would sit down to pee and then completely forget that I needed to also empty the dam piss bag. So maybe I'm not completely standing up; I am kneeling a little over the toilet in emptying it; but it's so not fun!

Haulley luya! Is that how you spell it? The phone call I have been waiting for for weeks!) My doctor told me this would happen one day and Finally!) I'm so glad! I just pray that it helps and that they are able to internalize this whole thing!

When I had spoken with my doctor earlier this week; he had told me that someone would be calling from Interventional Radiology to schedule getting that dam bag off me! He also told me a few weeks ago too. The way that my doctor describes it is " internalizing it? (my nephostomy bag) which actually means inserting a stent between my Kidney and my Bladder. Now the little tube that goes from my Right Kidney to my bladder is called the Ureter. (this is what is damaged and why I need a nephostomy bag or a stint)

The scheduler on the phone was very nice; she then asked me about what date and time would work best for me. Well for me ASAP works great for me!) So she scheduled me for 9am on Monday, May 18th. I would need to be there at 8am (I'm guessing so that I can drink some yucky shit first?) and that I would need someone to pick me up at around 2pm. I would be heavily drugged up (fun!). So no eating after midnight (this Sunday) and no taking anything for pain after 5am. Easy enough! Wow! I hope this works!

Here is what my doctor told me which is kind of discouraging, but I am hoping and praying that this is not the case. Now during that big huge surgery, my ureter on my right may have accidentally gotten sewn somewhere during the surgery (I think he said the abdominal wall), now it could be the Cancer itself, or scar tissue which would be the 3 main things for failure in this surgery on Monday to internalize this stupid piss bag; either way my poor right kidney is blocked. I pray for success in this surgery. Positive thoughts; life goes on and no needs for stress; just hope. I know there are lots of people in this world that love me and are praying for me no matter what and this gets me by; just know this.

Check out my weight. Here I am with Wet Hair and all, clothing, boots and only 118? At least I am over the 115 mark. It's just been very difficult to gain the weight and trying to avoid the foods that I love but that often cause my intestines problems. For now it must be smoothies, soups, maybe toast, and I'm so sick of Cherios, bananas, and soymilk. Since I have to be enjoying a meal twice a day with my antibiotic; it's almost impossible but I do each time without the aid of my trusty plant. I know for a fact that I could not even come close to stomaching it with out it. Don't get me wrong; I have tried to stomach with out anything and it just doesn't work yet; projectile started and that is not what I like to have happen. I so hate puking!

Last night I tried to watch the Farrah Faucet special and just couldn't stomach it. On top of being incredibly depressing; it seemed that she would rather die than loose her hair which for me was very hard to even comprehend. There are plenty of excellent wigs that look the same as her hair. What the hell? That's exactly how I looked at it. What if there was a treatment effective for her cancer but unfortunately she would have to sacrifice her locks? Maybe she is ready to go at least that's what I thought of what I saw of her special; it's very sad if she is; she offers so much wisdom to the world. I couldn't watch it; it's very sad that she is going through the hells of cancer and I really wish her the best but so many of us have battled on anyway despite. I lost my hair and am more than likely going to loose it again; but the most important thing I have going is my life and for that; it is totally worth every bit of it; I'd do it again and again!

As for the bladder infection; that has gotten significantly bit better (I can now pee a lot more and with out the pain = no more squealing and jumping off the toilet in pain); but I am bored with eating (not enough choices) and trying to get my appetite; it could be the antibiotics that is making me so nauseous. Well I thought I would try these healthy Whey smoothies that my friend at Whole Foods had given me some free samples of.

Yesterday morning, I had half of and 8oz smoothie (4oz) this with my morning Antibiotic (must have with food) and it had a really strange taste to it; kinda tasted like gross baby food. It was hard to stomach so I needed some cannabis to get it down. I would have definitely puked had I not done that. I covered up my little smoothie and put it in the freezer.

Later on, I went to Whole Foods today and I got an Odwalla Vanilla Protein Shake and a small bag of this Raw Maca Powder to put in some of my food for nutrients, cancer fighting ammo while bringing my body to more alkaline level. I am going to try to start to get back into getting my body into a cancer fighting machine.

Since the rest of that yucky whey smoothie was in the freezer for a few hours; I took it out of the freezer and I let it thaw for just a little while, then I added some of the Odwalla that I hadn't finished and then a table spoon of this Raw Maca Powder (incan superfood). I have to admit I was a little stoned and it was a good thing (I needed to drink this and also take my antibiotic) The smoothie then tasted exactly like Baby Food Creamed Corn. Ewwwwwww! Freaking so nasty, but because I was stoned (thank GOD!); I am proud that I finished the whole 8 oz. with out puking!) Wow! That's Pretty amazing and that smoothie is so incredibly good for me and my intestines!)

This morning; I didn't have the 4am wake-up call with projectile organs which was really nice. I wonder if that smoothie had anything to do with that? Maca powder? I did have to take a Percocet before I went to bed and that has had to become the norm for me. It's mostly because of the fear that I have of this pain; during digestion. I get some scar tissue type pains in lower abdomen too.

At times I wonder if stomach fluid (because of the shortened intestinal tract) is coming out of my ass which is why the excessive burning and then of course those muscle spasms. It could be the combination of all the cutting that has been happening there (5 times). I just know in my heart that it is healing and only a matter of time before I don't have to take anything for pain. I can live off of my natural highs in life (biking, snowboarding, swimming, hiking, rollerblading, skating, etc). I'm not allowed to right now with this stupid bag so here's to it being gone when I awake later on Monday!

UPDATE: I spoke too early and the projectile organs started up again. I had to do a percocet and then about an hour and half later (they wouldn't stop and it was killing me), I did a Klonopan; now I am feeling much better. Thank GOD!) I hate that pain.

Check out my stomach, see where that "X" is; that marks the place where when the muscle spasms hurt the most; it feels like a tear here and it so painful!(. If you notice the lower part of my stomach is very flat and then there is a divot (not sure what to call that -for all I know I could be calling this a piece of shit! it seems like the right term?) but the skin and everything just kind of moves up my stomach like there is a hill there. Now this will be interesting to see how my body will be shaping up in the coming months. I even circled where that awful fistula hole once was. It's just a tiny little right now. Trippy, huh?

Well this weekend should be fun and I have to get my sleeping pattern changed once and for all. (going to bed at 2am and awaking at 11:30ish) Boogie on Bayou is happening in Campbell this weekend and we got invited to a few barbeques this weekend as well. We have also been invited to a Birthday party for a friends 13 year old. We will see.

Nothing has changed with Tonto; he's still into his tunnel!)

Ohhh So Sexy....

You know I have seen hundreds if not thousands of movies and photos with sexy men and this has to be the sexiest butt I have ever seen. This photo does not even do it justice; totally mesmerizing!)

I took a bunch of photos (not so many came out good on my iPhone) while my honey wasn't looking as he vacuumed these area rugs. I was feeling crappy on the couch last night as my honey vacuumed the living room, stairs, and all the rugs in the house, then he cleaned my kitchen, both bathrooms (& toilets) and then I got thrill and it made my bladder infection actually feel good for a little while. I got hot and bothered watching him do housework all around me. It was so cute!

He did serve his 4 years in the Army and when he cleans the house; he calls it a GI party. All the many things I treasure most about him!) We have one of those now twice a month. It could increase to once a week, but we will see. He's doing a fabulous job taking care of me!) I'm lucky even though sometimes it might seem like I'm not.

Notice: NO PLUMBER BUTT! I can only be so proud. It seems plumber butt is the new fashion statement that actually makes me feel so old. I'm that Old Lady that just can't get it; why is everyone wanting to show off their Plumber Butt? I can't get into plumber butt; not even for myself. I don't wish to punish anyone but them having to see my bony ass; or my fat ass as it got to be a few times; I even cover up my nephostomy bag most of the time.

UPDATE: My doctor did call me today with results of the culture from my urine test that I took on Monday. This particular bacteria strain is actually resistant to both Cipro and Septra. I got prescribed Macrobid which has been tested to be effective on this particular strain. I can't wait until it starts working. I have only taken 1 today and I also took a Septra this morning (4 pills total since Monday).

I am still having pain pee sessions (feeling like I have to pee, a little comes out and then youch!!!( What horrible pain and it makes me jump and scream every time. Tonto has not been digging this at all. I can tell he is worried about me and of course Miss Blue Belle. Can't wait for that medicine to start working! I am grateful that the pain isn't totally constant but for most of the day; I get that urge to pee and it burns!( I can be out walking around and then feel that urge to go pee and then nothing or a few drops come out. It's so painful! It's just a matter of time before those horrible bacteria is killed off and I can finally get some relief what I pee!)

I do have a little better control on the Projectile Organs lately. Still doing the Klonopin which is working pretty good for that painful crap to have to go through. Yes, it starts with having to go number 2 and then it gets more and more violent if I don't do something for pain right away. Maybe it's my intestinal system having an anxiety attack and that's why this is working for right now?

I did get a visit today from the nicest nurse (Ellen) and she had to release me today because I am now ready to be off home health. I can get around the house much better and can even drive myself places. From now on as far as the nephostomy bag is concerned; I will need to go to Interventional Radiology once a week for changing. This nurse was so full of heart, compassion, and just a wonderful person all around. Just another example of how I can appreciate wonderful nurses.

Now she has come over the last 3 times to change my dressing on my back of course Miss Blue Belle loves her and this time she thought Nurse Ellen had come over to see her instead of me. I had to tell Blue Belle to go sit on her rug until she was finished fixing me. As she was fixing me; I got to talking to her about my frustration with cleaning myself. It's almost like I'm not allowed to all because it forbidden for me to get my back wet. I could easily get a serious infection from those tubes.

The worst thing about this whole Nephostomy bag is not being able to shower. Right now I feel I just taking "HO" baths for that last few weeks and it's definitely not the same. I feel so dirty and disgusting sometimes. My honey always tells me that I'm not at all and still the sexy wonderful woman he married. No my bathing is not exactly like the Urban dictionary says it (that's pretty disgusting; but then again I haven't showered in weeks), but basically using a wet rag and going over it with soap and then a clean wet rag, then a dry off. I was able to sit in the bathtub (but not anymore since this infection = it's prohibited now). I want to shower so bad!

I can't get my back wet at all; and we will have to figure out a way to cover everything up. The nurse was so compassionate as I cried telling her of my frustrations of not being able to bath normally. She showed my honey and me how to change the catheter thingy on my nephostomy bag and just disconnecting it; cleaning and sterilization, then putting a dry wash cloth and wrapping it up with some plastic wrap, or one of those freezer bags cut just right to cover and taped. She was so full of wonderful ideas and even gave us her card if we needed any more help. She would do her best to help us; so incredibly accommodating to us. I guess she could see the love in our home. We will be trying some of those techniques tomorrow; I just have to be a dirtbag another night!(

I was able to wash my hair yesterday over the bathtub and can only do this about every 3 days. When my tummy was burning; it is very hard to do and sometimes my honey will help me if I ask him to.

At least I am not in the severe pain I was in yesterday. It's improved some for the time being. I'm still excited that I at least got aroused last night from a sexy man doing my housework!) Happy moments in life work for me; if it's just laughing, enjoying good conversation, or just sitting there relaxed and not feeling pain is good enough for me. I am still enjoying life and although much of this is scary; I still have HOPE in my heart that I'm going to get stronger and beat this disease!) Things will get better!)

Not another Bladder infection!

Here is my handsome sexy cowboy! He is posing as an Alpaca Farmer. He is doing everything he can to take care of me and he even surprised me with some sushi (steamed rice, miso soup, CA rolls) last night. I couldn't eat that much for most of the day because I wasn't feeling good for most of the day yesterday. (infection)

Just when I have been gaining some weight; almost making it to 120, I get another set back; a bladder infection. I awoke 2 mornings in a row; both around 4:15am to having to pee really bad and then while peeing, it burned like crazy coming out. The annoying thing was; hardly any came out? I would pee a little and almost jump off the toilet once it came out; it was so darned painful. I also needed to empty my now stinky nephostomy bag. Now it's really starting to stink and I tried washing it and it seems to work some but then after a few hours the stink returns.

Well back to this infection; I took my temperature and it was a low grade fever of 99.6 which kind of worried me. I don't want to go back to the hospital. I just can't do it. I'm afraid of having to get more bags and even getting a shit bag (colostomy). It always seems like more bad news and set backs.

A few minutes after trying to pee; my tummy started churning. I had been stressed over the food choices I had made and it seemed that I was getting constipated. Well then the diarrhea started soon after and it was mostly water and hardly any substance which meant to me that I have a block somewhere that is causing everything else to not come out. There must have been lots of acid coming out of my ass because that burned like crazy too! It just was not at all pleasant. Yes, I am entitled to my joint after that dog gone pain!

I was having horribly painful spasms which made my sore on my stomach start to burn and then there was another pain that I felt while the spasms were happening. To tell you exactly how those spasms feel; they starts at my bottom and then goes to my stomach area. It's almost like an involuntary muscle reaction; while I am having the severe spasm on my anus, I am also getting a stomach spasm and then the heart burn; which with that stomach spasm almost feels as I am having a heart attack too; but damn does it hurt!

I took some Ativan and Klonopin both times but not at the same time (different nights); just to break up my medication so that it would definitely work on my spasms. So far it's been very helpful for right now; I just suffer for a little while until it kicks in; then I sometimes will sleep till noon or 9am. The Ativan for more instant relief and then a few hours after it had worn off; I will usually take a Klonapin if I start to feel like my system will act up; I did not want this to start up again. Too incredibly painful; and enough so that I had to take a Percocet too. Wow! Heavy Duty! I'm hoping this is just me healing and I pray that I am.

Yesterday I had written my Doctor about this and he suggested that I come in for a urine test. I brought Miss Blue Belle along in her vest and then on to the park for a quick game of frisbee since it was such a gorgeous day. I was slow moving and thought perhaps a quick walk for exercise might help me in my recovery. It felt wonderful and we walked up to this really nice lady with her small Ausie named "Bonnie".

Bonnie walked right up to me with her ball and just placed it right at my feet. I couldn't reach down to throw it because my back was kind of aching from the infection. The nice lady walked up to me as we talked and our dogs got romp and play together. She was amazed at what I had gone through as I told her my favorite love story after my 1st surgery. I love that true story always and I love others reactions when they realize that yes true love actually exists. Marriage can actually mean "in sickness and in health". I don't want to say the "till death do us part" just yet; I'm just not ready and he isn't either. We want to be happy together for many years to come.

Well, this morning was pretty bad with my infection, but I have it under control with controlled substances (Prescribed to me by my doctors). I really need to smoke some cannabis so that I can finally stomach replenishing my much needed liquids. That's one cool thing I notice with this plant is that it doesn't hurt me to use with any of my medications.

All of my prescribed medications do not allow for me to drink any alcohol so I'm not drinking any alcohol what so ever and haven't done so in a little over 2-3 months?

Well back to how the cannabis will help me. I always seem to get this horrible taste in my mouth (from the pain medications, or antibiotics) which in turn makes nearly impossible for me to stomach drinking any water right now. I feel that if I drink any right now; I will vomit. Hence; cannabis. I can actually tell that I am getting dehydrated and that's the only way I know that will help me. I know I have lost a lot and I don't even have an appetite. I also lost some more weight and am back down to 114.5.

UPDATE: My doctor called and told me that yes indeed I am suffering from a heavy duty infection. He asked about the Cipro and I told him "can't do that one". It made me so sick and I need to gain some weight. I am back on the Septra which worked for my last bladder infection. He also asked if Radiology had called to schedule trying to remove the nephostomy bag and replacing it with a stint. He also told me that he was concerned about these infections and my suseptablity of getting more fistulas. This really scares me and I pray that I can at least live a normal life in time for next snowboard season. I pray the end is not soon for me; it really scares me. I still have hope but I still have fear.

Here is where my medicinal cannabis will help to save my life. It's scary to be going through this but at least I am able to do something about it with out having to worry about going to jail like in states like North Carolina or South Carolina where they have a 0 tolerance for this age old medicine. For some reason these states have tons of money to toss in the toilet to arrest patients or peaceful individuals utilizing their own body to relaxation. Yes, that's exactly how I look at it. They have no right and this plant is on our Planet for a Reason; god gave it to us. It seems these very states stand by racism and lies for making this powerful lifesaving medicine illegal. I hope one day many other patients in my situation are able to save their lives too. I already know now that if I don't do something; I could die and that's scary to me. Why not prove to be Pro-Life and help the already living?

I am very encouraged that in my state that this plant could soon be legalized, taxed, and regulated. If only they would open the gateway for Industrial Hemp which would create much more revenue and jobs for the state of California. This could soon change too. I got to read some good news about my Govenator:

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2009/05/11/MNQI17GMBR.DTL

To me, this is good news. Well the truth about me is that I'm not entirely religious (I have to admit that I am confused in that area), but I am very spiritual. (it's probably from some of my Native American background - I am still considered a Caucasian mutt!) I have this belief that there is a God in nature (not in huge Churches) and that he created this medicine for a purpose.

As for legalization, I don't see any problems. Many people right now are unemployed and some are very stressed out.; just watch the local news and it's a total stress out! Cannabis has a way of relaxing those who are stressed and I don't see any problem with those who need it. I feel so strongly that this plant can curtail the family feuds and stresses over money and allow for them to enjoy quality family time with out violence. Sure, mixing with different drugs or food have varrying side effects , like alcohol. I don't feel it should be mixed with alcohol just as many medications are. You never hear of anyone committing violence after partaking in cannabis (if you do; another drug is often involved); I feel it is needed and it could help states with their budget shortfall; particularly in California.

Industrial Hemp has so many uses and could create countless jobs; it is not dangerous at all and in fact quite the opposite. It is the strongest material known to man. Can you imagine if we utilized hemp for more than just clothing?

As for me in surviving this horrible disease; this blog helps me and is excellent for me get out my feelings, fears, hopes, and dreams; I do hope that I inspire many and perhaps help others to appreciate what they do have in hopes that they too will listen to their bodies when something is wrong.

This blog is very open and honest; because simply; I don't have much to hide nor do I feel like hiding. I'm Alive so hear me Roar! I'm so proud to have survived so much and I will keep on surviving. I just enjoy living as much as possible even though lately it has been on the couch and in my own bed, short walks outside, and even small trips to the grocery store.

My honey and I are still trying to plan a few days get away on the beach somewhere close by with our girl. Tonto may have to stay with our neighbors for those few days. He won't mind as long as he is fed, loved and talked to. Here's to making it through many more obstacles in life!)

It's much better we don't have kids..just pets...

As the title of this post; it is true. I wouldn't want a child to go through what we go through on a daily basis. At least animals can go through the trauma's with you and children might be affected mentally while witnessing their parents suffer as we often do. Sometimes it can be downright scary. We can also walk around naked if we prefer to; use all the profanity we wish to and if I need to smoke a joint; I can. Our household is an adult household and the animals don't seem to mind at all.

I had to add these cute photos of my pets making me laugh and keeping me happy. Hope you enjoy them as much as do. I just bought a new lamp for our living room and in order to hook it up; I had to climb behind the couch where I found this oldie but goody kitty toy tunnel which makes all kinds of loud ruckus and that Tonto loves. Now it's his favorite thing to enjoy since Popcorn.

As far as my health, I'm still facing horrible ass spasms which suck greatly and they seem to be healing more and more each day. I still have to use pain medication for right now because it's too ridiculous to suffer having those types of pain where I can't even sit down or even walk in some instances. My poor colon/small intestine (not sure what it is after all these surgeries), has gone through.

It's been a little more predicable and I can kinda sorta time it just right that I can go to the store and immediately head home to a bathroom. Yesterday, I only pooped in my pants twice (at home) and today one and half (it was so close!). That's a great day!) Imagine if your worst fear was shitting your pants while standing in line at a grocery store? Well actually it would take a lot more than that to scare me. I have lost my vain in all of this; nothing surprises me or scares me unless blood start spurting out of my tummy or bottom, or nephostomy tube. Just the life or death situations for me; I can get over shitting my pants very easily.

I decided to cheat on my diet these last few days so that I could finally gain some weight the fun way!) and besides I am tired of staying at the 110 - 115 range where it seems like I'm not gaining any weight and I'm starving all the time; only not starving for Bananas, Rice, Apple Sauce, or Toast. Yes there has been plenty of diarrhea but in ways it was totally worth it.

The whole fattening diet been working with gaining some weight and I am now up to 119.5. I have been pigging out on chocolate and vanilla pudding, even Ben & Jerry's Chocolate swirl cheese cake, even some sushi, blackened Mahi Mahi, and more soup, bananas, smoothies, yogurts and more! Mmmmmm Mmmmmmm!

I got to go shopping today with my neighbor Amanda yesterday. She has missed hanging out with me and it has been a long time since we last went on a shopping adventure. I got a few comfy pretty outfits which I hope to have a fashion show with my honey later on today and will hopefully post some great shots here.

Poor Blue Belle has been suffering some when we have to leave her at home. She used to like watching Animal Planet while we are gone but lately there has been too many scary shows like swamp monsters and animals that kill on lately that scare her; so we just leave her at home with a nice playlist from iTunes. Friday's are better for her because the National Geographic Channels has Caesar and Dog Town on all day long. While me and Amanda were out shopping, her dad took her on a nice long walk.

Well anyway, me and Amanda had some fun as we even chatted about her going to the Courageous Kids Day at Great America which is being held today. She was pretty excited about that. It should be lots of fun for her and to celebrate life. She has met some famous football players in the past and even went to her very first first Football game last November. The 49ers were on a serious loosing streak that Amanda being there, they ended up winning. This will be year 10 of her remission from Brain Cancer. Without a doubt this little girl is a walking miracle; she is my hope and inspiration that one day me too will celebrate my 10th year in just 3 years!

I got to talk with my mother for Mother's Day as she reminded me of another reason that I hated eggs. I totally forgot and just put out of my mind but a long time ago when I was about 6 years old, she had made scrambled eggs for all of us; I was the only one who didn't eat the eggs and when she asked me why I didn't eat the eggs; I told her "I'm not eating eating anything that comes out of a chicken's ass". Yes, at 6 years old I used the "a" word. It wasn't apparent where I had picked it up but it was a good laugh that we had today. And I thought it was the just the texture and smell that made me and still makes me hate them!

LOOK WHAT HAPPENS WHEN I WATCH THE NEWS! (I worry about others)

My husband has always been relieved that we don't have children so that we don't have to watch our mouths except which our friends with young kids come over. If I am in pain, I can just grab a joint and relieve myself. If I poop my pants; I can take them off and not have to worry about being naked. It's hard sometimes; The conversations at my house are better left for adults. We often laugh so hard at so many crisis that we are faced with as opposed to some normal households. We don't take the little things in life for granted; they are all special. We live in the now and we get by Day to Day trying our best not to watch the news and having it grapple with our nerves that the sky is falling and that we are all going to run out of money! Panic! Panic! Panic!

OK, sometimes I can't help but read on the internet routers about another family being killed because of finances. It's so sad and I can't even begin to understand why this happens that perhaps for them loosing their job is often very traumatic; many people need therapy for loosing their jobs.

I don't know, it just does something to my heart that someone could have that much power in a family to kill all of them. This seems to be a very serious situation. At least lately; it's often the father who kills the entire family. (now I am worried about more families committing murder and then committing suicide on their family members) I often wonder how many times has this happened since the financial meltdown?

Just like PTSD with soldiers, perhaps something else is happening to these families? Yes, sitting at home, I often wonder what can be done to stop this. I hope there is a way to help save other families before this keeps happening over and over again. We really need to have these situations investigated instead of spending our hard earned tax dollars arresting non-violent drug offenders; gee we could be saving lives instead of ruining them; imagine that. New Priorities are definately needed; get rid of the waste and that includes those extra prisons.

Maybe some community involvement could help these families? I don't know why, but I can't help but worry about these situations and that perhaps my appreciation for life would at least make them stop feeling that lack of money is worth taking out their entire loving family. I am fighting for my life and no amount of money will make me fight any less. I don't feel it's right to put a price tag on someone's life. When it comes down to it the heart and soul of someone you love, really is priceless. Sometime money makes people do horrible evil things and maybe my lack of money makes me more loving?

My parents did just fine when we ran out of finances. True, we did eat out of garbage cans during the 80's only a handful of times but it certainly wasn't worth taking out lives. We still had a home to live in but even so many still survive shortly in cars. I have met many grown kids of that environment who grow up to be amazing adults. Some even put themselves through college. It seemed to make them stronger, more resourcesful, more appreciative of nice things being done for them, and most of all more down to earth. You could actually carry on a normal conversation with them. These special individuals appreciated the help they receieved from homeless shelters that they too volunteer sometimes; I want to; I have donated many times. It's very inspiring to hear of those who survive the impossible and who make better lives for themselves and their families. That's the good news I wish to hear more of!)

When we had moved to SC for a job and once we moved there; my father lost that same job shortly after the long move. He did everything he could to find a job and it was so hard; the important thing is; we got through it all as a family; a strong family. Maybe they ended up in divorce, but we kids got through it just fine. It's not pleasant to have to loose some material possessions; the important things to remember is that your family and even friends are worth so much more than those mediocre possessions. You shouldn't have to loose those most important beings in your life; you should cherish them!)

When it comes down to it; we can all do something to make things better for these families that feel that death is the only option. Healthcare really is important especially in these cases where a simple visit to seek psychiatric help could have changed everything for those families.

I really admire Obama's determination to stick with health care. He is on the right track. I know of many cancer patients who have died because of their lack of healthcare. It's so sad but I feel many lives will be changed once healthcare is reformed to work for us. It is so important and there are so many programs we could have which would create jobs; help new businesses that create jobs here; allow consumers such as myself to finally purchase something that isn't cheap and made in China.

We have all kinds of opportunities to create green jobs especially here in San Jose. We are hopefully working towards having a composting program put in place which will bring in more jobs, save money and space in our landfills; that's just one thing. We are also considering taxing and regulating cannabis which would bring in over a billion in revenue rather than spending several billion locking up offenders. It's not a deadly or dangerous drug; only through lies and racism is it illegal. I certainly hope that the federal government will eventually get past those lies and racism and make this plant legal once again. It could save so many lives. I know it has saved mine and continues to. This to me is exciting.

These days I really hate shopping because it seems that I look at tags all the time and sometimes; I just won't buy it. I don't need it that much if its made in China. I can definately live with out it. I can make what I need myself if it happens to be made in China. I don't need it. One day we will have products made here and there will be jobs once again. I do have faith and we can also put scientists and researchers back to work finding cures. OK this post was more political than health related but its stuff that is on my mind that I wish I could have a part in fixing or inspiring.

Gaining Weight...Finally..

Here I am on the couch in my latest creation and with Miss Blue Belle. I'm recovering from severe spasms. I have a cool Peace sign tied t-shirt and then this Peace Sign head wrap!

Well I will start with Tuesday: I did go to see a Psychiatrist on Tuesday morning; mostly just to make sure that my head is clear and that all of my thoughts are normal for someone who is going through what I am with this disease. I feel that my head, heart, and soul must be in place in order to be strong enough to fight this horrible disease! It's just that my emotions have been running quite high lately.

I have been crying quite a bit lately; mostly out of the fear of dying with this disease. I don't know why Death is so scary for me.? I'm not even close to being ready for that! I don't imagine that there are too many of us who are. It's supposed to be just another journey in life; but I don't feel I am ready for that yet! I'm way too young! I don't even understand why so many families are killing themselves over silly bills and money? How could money possibly be worth more than any family? It breaks my heart!(

I have to say honestly that feeling of dying is the absolute worst. I even cried to the point of having an anxiety attack when my husband reminded me that I needed a will. I cried even harder than ever when he suggested that he needed a will for himself in order to protect me. I honestly don't even want to think about loosing him because just the thought of it; rips my heart and makes me cry like a baby every single time. If I ever want to have an anxiety attack; just think that way! It's a hard denial thing to even think about to loose the love of my life.

I can't imagine what so many women and men have to go through in loosing a loved one like that and how hard it must be to pick up the peaces and to move on with your life. It's just one of the things I try not to think about and it scares the living crap out of me. I don't think I could do it. Loosing any family member, but for me; it's my other half. I love him more than I love myself! I do love myself; don't get me wrong; but I would happily take a bullet for him if it ever had to come to that. Ideally, if it were to come to the end of our lives; I would want to die a second before he does just so that I wouldn't have to live a second with out him. These are just a few of the things that we talked about. So the answer was "No" I don't wish to kill myself and "No" I don't wish to kill anybody. Those are kind of the obvious questions many health professionals have to find out.

I felt my meeting went well with the Psychiatrist as she reminded me that my husband and I are a very impressive power couple and the love that we have for one another is very rare. I had to tell her how impressed I was at how much my love took care of me. I even lost it and cried as I was telling her this and she then asked me why I was crying and I told her; because I love him so much and it deeply touches me; everything that he does for me; it's just so sweet!) I even told her how much he makes me laugh and how so many terrible things that I am facing are not so terrible as long as I am experiencing them with him.

I think it must have been impressive to her that our love for one another has gotten us this far. She did tell me that my feelings are very normal and it was relieving to at least know that me crying and worrying is not me loosing my mind; it's just me being human. Of course I had Blue because of Blue Belle and her joyfulness; I don't have to take any Anti-Depressants. Its just not necessary. She makes me, my husband, and all those around me smile and that's undepressing enough!)

Now I still have problems sleeping at night and knowing that I don't have an addictive personality helped her in prescribing me 2 drugs that I can switch from in case one doesn't work as well. I did so in the past couple of years when Ativan didn't work, I would switch to the other drug. It's between Ativan and Klonopin. The way that these two drugs work for me in giving me a choice of the two to take when needed: The Ativan is less strong but is activated much faster in the case of severe anal spasms or an anxiety attack. For Klonopan, if I am feeling stressed or that the spasms will eventually come around it takes longer to take effect, but it the effect of the drug is longer lasting.

My system works better with changes; for example, one night that I am feeling restless, I might take an Ativan, another night, perhaps a joint combined with some Yoga, the next night a Benadryl, then perhaps nothing at all, then it might be a Klonopan, then nothing at all again. I have to switch things up or my body will become immune to it. That's exactly how it works. If I don't switch it up and just use any of these 2 days in a row for sleeping; then there is a good chance that I might be rolling around all night. These two drugs are normally extremely addictive for most; but I plan to only use when needed as I do all of my medications. My last prescriptions lasted a whole year; only taking what I needed. At times I do suffer from insomnia and it's mostly caused by worrying too much about the future, scared of dying, finances, job, family, friends; mostly stress. I will lie awake all night long tossing and turning, running to the bathroom, or to go downstairs to watch TV if it's bad enough.

HEALTH UPDATE:

My system seems to be improving some and I am able to tolerate eating other types of foods. I think I have been getting used to some of these symptoms. The worst of the symptoms are the anal spasms by far. Those suck ass quite literally for me; no pun intended. I have been dealing with them as muscle spasms and even taking an Ativan which basically calms my nerves and in a sense those anal spasms are also caused by nerves. They are so incredibly unpleasant and feel as if I have dry heaves in my ass! Am I an asshole? One time my oncologist prescribed Ativan to me and on the bottle itself; it said "take as needed for Anal Spasms". That would be an embarrassing bottle to have to explain but it doesn't bother me at all!)

I sometimes ask God and I know that sounds bad; but why the hell do I have to have these Ass Hole problems? What the hell? Does God think that I'm some sort of an Asshole? Why can't real assholes have these problems? This world would be such a great place to be if all the wrongs of the world were corrected in that manner. When someone is an asshole; they could just go through what I go through in a day or how ever long it takes for them to realize that they are being assholes in the first place! YES, let the real assholes of the world have these horrible painful anal spasms and the hemorrhoids, the diarrhea, burning asshole; the whole 9 yards deal!) That would be the coolest; I wouldn't be an Asshole to anyone if I had to go through all of that! Too bad I do anyway; just to relieve that pain with drugs for now!)

OK well the Ativan takes about 15 - 20 minutes to take effect but once it does; I am more comfortable and not really feeling any pains for the time being. Sometimes I will smoke a joint to get rid of the horrible heaviness that I will feel in my tummy which is also quite painful. It literally feels as if my intestines are about to head right to my asshole. That's pain worthy of getting rid of!) It's what makes its way down to my asshole. OH the things I am having to do to gain weight and to get rid of pain. One thing after another, but at least I am at home healing and there's no better place than being at home right now!)

I also have my honey at home and he has been threatening a romantic weekday (when the hotels are cheap) getaway. We really do need a little mini vacation after all this crap (no pun intended). I just need to be able to survive a few hours in the car with out having the urge to have to pull over. I can handle those 5 minute drives; those are rockin right now. I survived a whole 45 minutes of going out for Sushi last night! Oh that was good! Didn't eat much raw fish (just some tuna and salmon), some miso, and a few CA rolls.

One of my honey's responsibilities is to check my Nephostomy tube dressing each day. He takes these jobs very seriously and inspects closely. Yesterday he found the dressing was coming off and underneath it was wet. He was very concerned and was not liking that I was taking baths and quite possibly from accidently getting water up there. Not sure how as the bath was quite shallow each time. Just needed some butthole releif. With that, he drove to a medical supply store to get me my very own sitz bath butthole contraption for my burning butthole! Oh how I love him so!)

My back was so incredibly itchy and I really tried my best to resist when I wanted to scratch and oh how I wanted to scratch to my heart's content! It was hard to resist and of course it got wet and sticky. Hopefully it wasn't urine seeping out (ick). Do I piss people off too to have these pee pee problems too? What the hell? Just kidding.

The nurse came over and changed my dressing and even got me a new tube hangy thing (forgot what's it called) but it helps hold the tube in place in case I get it caught on something it doesn't completely rip the whole tube out of my kidney. She also took my vitals and will be over next week to change that dressing again. Hopefully I can get rid of this thing in just couple more weeks. Plan to stay possitive that this isn't going to be a permanent thing. Thanks to all who have been praying for me and sending me all kinds of healing thoughts. I am getting stronger each day and proudly weighed in this morning at 116lbs!)

A Responsible Thing to do for all of us...

I'm very proud of myself for doing one thing while at home. Actually it was 2 very important things. I created my "Last Will & Testament" and a "Power of Attorney". I didn't have to drive to see a very expensive lawyer, instead I got it done all online. I also saved quite a bit of money and it really did have to be done. I had literally been putting this off for years.

It was much more convenient and easier to do than I thought it would be. I don't know why but I always figured these things have to be complicated; but it really wasn't at all. All I have to do now is to get it notarized, have 2 witnesses sign and I'm done!)

I have been very lucky and blessed at the same time to have gone through what I have with a very strong Will to live. I hate hearing on the news about unlucky individuals who actually prove that sometimes it could possibly be out of our hands should a life be lost. I'm talking about victims in accidents or acts of violence. A life can be lost because of a selfish, hateful person who decides to take someone else's life or it could even be an accident, or even natural or health related; the responsible thing to do for your family and loved ones is to already have a Will or a Power of Attorney in place; this way loved ones don't have to suffer in the case that their own state decides to take over and claim everything that belongs to a family or just hold on to it for years and years while it has to get tied up in courts.

I don't know if this actually happens but the government has been extremely untrustworthy these past couple of years. Either way, I'm covered legally and now I don't have to worry about my honey getting screwed over by my own state government should something happen to me. (see I'm not totally convinced that I will die of Cancer) but it doesn't hurt to be prepared.

MY HEALTH UPDATE:

These past couple of days were a little easier but I still have had severe diarrhea and heartburn each and every day. I even started getting very painful spasms in my bottom that my honey had enough of me crying that I had to take a dreaded painkiller which did help lots.

I have even gained a few pounds and I hope to keep them on. The eating is getting a little easier by the day but overall the diarrhea accompanied with some really painful spasms is the worst of it right now. How unpleasant it is to have those sorts of pain!(.

Don't get me wrong, it's still wonderful to be alive and things could be much worse. I can at least be very thankful to be at home with my honey my pets, and that I can go outside on a walk and sometimes even drive to the store. At least these painkillers are working for this right now. I can't just sit there and suffer in pain and my honey is right about that. I was too busy being stubborn and just dealing with the pain by screaming and crying and then trying breathing exercises which did little to nothing besides annoy my honey. He had enough of that!

Well here was a wonderful laugh I got to have last night. While I was sitting on the couch in pain from going to the bathroom so many dozens of times when Tonto had enough and he cried for me to pick him up. He then slept in my arms for a little while and then when I put him down he just stretched out and napped while I watched movies. He was even snoring which really cracked me up until he woke up briefly, gave me a dirty look and then continued to nap out. Notice those big black toes!

I also found out a date in which to go back to work which should give me plenty of time to heal and to put some weight on my bony ass!) We are settling on the date of June 23rd. Mostly because of the kidney issue and the nephostomy bag and getting that removed. I don't know how long I will need to make sure that my bowels and kidneys are healed but I feel that 2 weeks should be long enough to heal. We will see. Also, I don't have any clothes my size currently and I refuse to buy any because I know they will be too small next week or the week after; so what's the point?

We had a nurse come by to change my dressing on my nephostomy tubes today and she found that the reason my heartburn has been so god awful is because I had been getting something for that in my feeding bag and also in the IV in the hospital. Now I am receiving nothing and the stomach acids have building up and causing severe pain. She called my doctor right away and he immediately prescribed Pantoprazole. My honey went and picked it up for me right away. Let's hope this works!)

I do notice that when I go out to the grocery store, instead of men looking at my boobs;(sometimes it happens and I just ignore = no big deal!) well now they are looking directly down at my nephostomy bag which most of the time is covered nicely with a scarf. I bet it's really sexy and perhaps it's also quite stylish I suppose. Maybe they have pee fetishes? Just kidding; but I don't really know what others think of it or feel when they see it; I hope that they see in it that I am a survivor of some sort and they should be incredibly grateful that their kidneys or body parts work. I had taken Miss Blue Belle to the doggie park and noticed a few people looking at it and I had it covered beautifully with a scarf that matched. Now I am going to have scarves that match Blue Belle too!

I don't mind at all wearing the annoying thing in public if it does this to others. I sport it around proudly and even decorate it so that it matches what I happen to be wearing that day. Blue Belle will get to wear matching scarves. I think my brother knows how to make them and he's visiting next month!

Even if this stupid nephostomy bag is still in place when I do return to work; I won't be embarrassed at all. My loving co-workers wouldn't even care or notice - instead, they notice my spirit most of all. I just hope and pray that I get to ride my new roller blades, bike, to swim, and most of all snowboard this coming winter season! For now it's walking with my dog, cat, and hubby!)

He does all the shopping...

It's been nice to be able to eat again but I am suffering from the side effects of waking up a dormant intestinal system and suffering from lots of diarrhea. Well I also lost 1/3 of my intestines so there's less time or less space to get through. The first night of eating (I had some "Brown Cow" yogurt and my sweet neighbor made me some cream of chicken soup) I had diarrhea all night long and then Wednesday all day long. It seemed as if each time I stood up; I had to go to the bathroom. My poor bottom has hurt like crazy. Hell it still hurts!(

Since we have been having this stupid "Swine Flu" outbreak (we have a few positive in my own town and neighborhood) and our neighborhood being so diverse; I am not allowed to shop across the street at our ghetto Safeway. No way! What do I think of this Swine Flu? I think it's crap that the media is scaring and stressing us out when we really don't need it right now; isn't loosing jobs and companies shipping our jobs overseas enough? There are barely 100 cases maybe, and how many people are dying everyday of cancer? Too many to count I'm sure...

Well that doesn't stop my honey from trying to protect me. He went to the store wearing his gloves and then had to go to "Rite-Aid" for more butthole medicine for me. He is so wonderful to me. Now it doesn't phase him at all. He will go over and get anything I wish to get. At first asking him to get such things embarrassed him and he was convinced that everyone there, must have thought he was gay because it seemed that he was always going there for a few common things like beer and butthole stuff.

He has purchased many stool softeners, suppositories, laxatives, enemas, and even one of those huge red rubber douche bag things with some "KY Jelly". That was a very hillarious spat we had but overall he did it and now he never ever complains. It's just the miracle of me being alive that gets him through such obstacles. At least we can laugh and get through this.

I had diarrhea for most of yesterday and then the heartburn started. It was pretty brutal. All night long I suffered in pain of getting up and going to the bathroom. at all hours of the night I had more diarrhea and then some vomiting. It was quite miserable. All night long, I would run some hot water in the bathtub and just fill mostly the bottom so that my nephostomy tubes did not get wet on my back. It's such a process of having to unhook the nephostomy bag before taking off my underwear or pants. That too is getting on my nerves!

I can't wait until my intestines and body get healed. This is hard and it has been quite painful to endure. I can honestly say that I have weaned myself off of all painkillers (no painkillers for 2 days) and right now just bearing and putting up with the pain. I was told that I needed to do this by my doctor; so I did. No arguments there!)

I also called a dietitian this morning in order to find out what I should do about this horrible, horrible heartburn and of course the diarrhea that I have been having. OK I did do one thing stupid that I can at least laugh about. I did not want plain white bread and instead I requested sour dough. I ate about 2 slices of toasted bread yesterday and perhaps this is what caused my heartburn? It kinds feels like that might be what caused it? Well, when I called, I couldn't get in touch with one; just a regular advice nurse. She did tell me that a dietitian will be calling soon and will follow her advice on what I need to eat to stop this severe diarrhea. It seems that every time I stand up, I feel the urge to go. It sucks!( I am eating some yogurt and feeling a little better; just the darn diarrhea!(

I have a very important doctor's appointment this morning which will determine when I can go back to work and when things are expected to get back to normal. I know I am healing and learning many valuable lessons a long the way about foods and my digestive system. It's all about getting used to it and it getting used to different foods. I will need to feel and understand my body once again. I will do everything in my power to heal; that's my ultimate goal.

I just got back from my doctor's appointment and it went well. I can take anti-diarrhea medicine and heartburn medicine. It is preferred that I go the all natural route for pain (in so many words = it's what works and won't mess up system). He took out the pick line and looked at my wound on my tummy. No more packing the wound, just Neosporin and gauze. It should heal much more quickly. (Forgot to get my doctor's note for work!(

In about 2 weeks I should be contacted by radiology to see about getting a stint put and getting rid of that darned Nephostomy bag. He told me that it might not be possible because of the cancer, scar tissue or the possibility that it might have accidentally become closed up from the surgery (stitches). In that case I would need to wear it for a while and then a urologist would try to help me. I still lots of hope and will think and feel positive that it can be fixed. It doesn't do any good worrying about it. I am still very thankful that I get to spend my days with my honey.

Also I had a nutritionist call and analyze my situation and she recommended all kinds of foods and the BRAT diet for which young children are often on when they have diarrhea.
B = Bananas, R = Rice, A = Apple Sauce, T = Toast

That sounds simple enough and I can also do soups but nothing with fiber. No fiber at all. For now I plan to relax on the couch, watch some TV and try this snacking as much as I can. I am off lockdown for now. My immune system is a bit strong and I can go out in public and I celebrated by doing some grocery shopping (not at the Ghetto Safeway but at a Raley's store close to my neighborhood. I was happy to be able to do that, but once I got home the severe diarrhea continued and my bottom is burning like hell. It's painful and I will be doing something for the pain; it's absolutely rediculous (smoking a joint!). I'm legal here and will not allow myself to suffer needlessly. My doctor doesn't want me to take any more prescription painkillers because of my system just waking up. This medicine is OK by him!) It's funny how the law is but I do have faith that my President would never allow for me to be put in jail for ridding myself of needless pain when my options are this low.

We were a bit panicked over the whole Swine Flu scare and I don't appreciate the media scaring us like this. It made the front page of the San Jose Mercury News many days in a row with scary, scary headlines. My new name for my local newspaper is now the "San Jose Bad News". If the news is not bad, they will not print it. What is it with just focusing on bad news? It's really wacky how they run with these stories and a lot of people are gullible and I saw our very own Vice President being very gullible (he does make me laugh and I love him for that! Bless his heart!) and then the President; he's so very cool, calm, and collected; he always seems to calm me down; it's not so bad = no worries. He has it under control. Even down to the tone of his voice which calms me therapeutically every time and I love it. I'm one who definitely does not need stress or fear.

That last President; that's what he was all about; stressing us out but not really knowing what to do about it, except make up new stupid words; acting the job and not doing. I really don't understand those who feel the need to stress over the sky falling when they should be out enjoying the blessed day that they have been given. Everyday really is a blessing and there really is no need for stressing out over needless things. Why be scared all the time of terrorist attacks? I can't imagine what that must do for nerves always stressing like that. What about getting cancer or some other deadly diseases or just being thankful that you don't have one? None of us really know when our last day will be but we really do have to make the most of right now. I know I say this all the time but I truly believe in it!)

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!)