Radiation Dermatitus? and more....

WARNING: Much of this post is to be read at your own discretion.  If it bothers you to read about  the countless female problems then maybe you should pass on this one.  It is a very honest and personal post of problems I am dealing with and fighting this horrible disease called Cancer.   I know for a fact that I am not the only person in this world that has this particular problem. No matter what my husband is right there by my side fighting this with me; he does everything he can to ensure that I survive each day as we approach them.  I know that I have him worrying practically constantly because of the pain I  so often suffer in.  He wishes so much that he could just take the pain away or for me to not suffer any more but the truth is; my love for him is worth every bit of this suffering; he makes my days more than worth living.  He is my rock, my hero, and my best friend in the world!)

Well first off, I am dealing with this feeling of having a urinary infection (again) and it hurts  like hell to go pee sometimes.  How unpleasant is that?  Now this is the ultra embarrassing part and the add insult to injury part of another thing I am suffering from.  It's painful and its so incredibly itchy!  It makes me want to scratch until I am bleeding; that how bad it has gotten.  I try so hard not to itch but sometimes I am weak at the urge to do so.  It's pretty powerful stuff!   My picc line itches like crazy too but this is different. The reason that I am also suffering from this severe itching is I know some way connected from having had the  radiation to my abdomen.

I guess part of where they radiated me was in my crotch area because Palin had spread her  death grips down there as well.  How unpleasant; wait till you hear the rest.  We already know about my right side that has the hockey puck (Medtronic Pain Pump); well the left side contained Palin but I had no idea until lately that she also spread down close to where my bowels are. Anyway, I can't help but itch like crazy and now I have this dark red and blue colored burn in a most unpleasant  of all place;s talk about adding more insult to my injuries! Ok the location is just above my pubic area; actually right on top of it and it's red and blue, bubbly and very flaky with dried skin. I looks like I have a horrid looking crotch area and its the ugliest of all sores I have ever seen:.(   It's not pretty and believe me it's not pleasant either (not in the least!).  Most of the time I am bothered with the horrid itch while I am standing in line at the grocery store; now that  really sucks!   So if you felt that your life is less than perfect; well imagine that too?   The odd thing is; I love my life despite this and all that!)  I  also have  this huge gastric tube with a large bandage covering most of my stomach; how's a woman supposed to feel pretty like this for my most deserving man?

I posted this problem on an excellent Ovarian Cancer support group board and it was answered in practically minutes.  I got 3 great responses but it does scare me because it is a Radiation burn or Radiation Dermatitus.  Well believe it or not my honey still loves me and feels that I am the most beautiful woman in the world.

thanks (well now I'm embarrassed!(

Well I made the mistake of watching Dateline NBC about how horrible and scary the internet is; another reason to avoid the internet!  Beware of middle aged sick men who want you to kill yourself or commit suicide and will even suggest how to do it; and make sure to do it in front of a webcam.  How in the hell can someone be so sick? and these are young vulnerable kids we are talking about?   It's not the end of the world if you get embarrassed at school or if other kids  are making fun of those few who decide that there is no way out; but there really is.    It made me want so bad to post a link to my blog there so that those kids or anyone considering this sicko to rethink their options and at least be thankful for what they do have.   Can their bodies allow for them to eat, play, ride their bikes, get a dog (or cat), never experiencing true love; decide to kill themselves before they can get any of their life goals completed.   I just can't imagine anyone wanting to kill themselves over money or anything; actually if you are suffering in extreme pain and you know you are dying and don't wish to suffer anymore; I do understand that too; I just have not made it there yet.   Animals are really cool that way in that they too know when their time is up and we as humans eventually get there too.  I know I'm not there yet even though at times it might seem downright aweful what I am going through; I'm a glutton for punishment and I feel that is one thing that has gotten me this far and pot too!  I love addrenaline rushes like going really fast down a steep mountain on a snowboard; I can still close my eyes and imagine myself skating or boarding.  It's a very good form of meditation for me. I still wish to fight and I still feel that I have so much to fight for.  I don't want to die; at least not yet.  I'm not done with LIVIN!  I have a few more things that I would like to get done.

I have been riding my bike everyday except for today; it was just too hot and the air quality is really bad.  I only have just a few hours in the morning (8) to ride my bike.  I can't ride for the other 16 hours because I am hooked up to my TPN.  That would be a nightmare to get myself out of if I got hung up on the wheels or chain! Youch!  It would rip out my picc line and that would be next to difficult to replace.

  Tonight I am missing out on seeing Bad Brains which is really a legendary band.  I used to skate to Bad Brains a lot when I was just a young skate betty as we were commonly called or referred to.   I never got to see this band live and tonight all the original bandmembers are playing.  I first got into Bad Brains when I was about 16 or 17; I had the "I against I" Tape (for my car) and the first time I ever heard them; I fell in love with them instantly.  I could not believe the sound; they sounded amazing even on Tape.   I had one of those rare Albums where every single track is amazing.  

In about 1994 or 95; I was working in this Microbrewery Restaurant in Sacramento and it was pretty late (around 2am).  I usually worked late and I was working my way up bussing tables back then (talk about back breaking work).  I got home in my little white shirt and tie; unlocked the door to my townhouse apartment and a big poof of smoke comes rushing out.  Did it ever smell so good?)  All of the members of Bad Brains were there in my living room smoking out of my room mate's bong.  What a beautiful site to see!  I was so happy and surprised.  I rushed upstairs and took a quick shower, changed out of my dirty white shirt, ties, and filthy black pants.  No I did not sleep with any of them; but I did get them all to sign both of my CDs and it was  so cool to talk with them for just a little while.  They needed to get some rest and get going back on the road.  My room mate had gone to see KORN and Bad Brains earlier that evening (I was really surprised to hear that Bad Brains had opened up for KORN)    I was really surprised but could not for the life of me get that night off with such short notice (1 day)  It was like a Friday or Saturday.  My room mate and I dug for extra pillows, air mattresses, sleeping bags, and blankets and sheets.  They were gone hours later but it was really cool to meet everyone (H.R., Dr. Know, Darryl, and Earl).  So that's my little story about meeting Bad Brains!)

Well the original members are back together and we had been planning to go but we were really more reluctant to go because of my unpredicable health problems.  Many times if we do go out; I will most likely spend the evening in the bathroom.  It just sucks that my intestines are no better than that.  They have been acting up quite a bit today and being disruptive to us while watching TV.  OMG where they loud and painful!  No pain medications excpept my natural medicine with out bad side effects; it's all good; except for missing an awesome show.  My intestines just don't last at all; maybe a mile bike ride and that's it most of the time.  I don't get to go many places except the occational hospital visit; sometimes the grocery store across the street.   Sometimes we get lucky and are able to travel short distances with out many problems.  No matter what I have to go to the bathroom when I arrive someplace  or shortly before leaving.  It's kind of a bother and to me its just one of the other things in life that I have to put up with.  My honey always makes me feel better about situations that we tend to get in and no matter what he has my back.  He was all up for the show just yesterday but upon hearing my intestines and knowing how they can be; we thought of all the excuses of why not to go to this show: 

A. I have met the band

B. If we want to hear them that bad; we can just play them on iTunes

C. More than likely there will be lots of pushing and shoving at this show; could be dangerous for me

D. The bathroom situation at the Catalyst is less than satisfying to say the least and we could tell that this would be a problem for most of the evening and it is so far.  I couldn't imagine going to see a show and having to hear the show from the bathroom and it being a gross bathroom too!(

Yes those excuses far outweighed going to see them.  You only live once I know; but sometimes you have to look at things from a  different perspective.  So far I'm puking and pooping quite a bit  this evening and I also need to drain my stomach!) Fun!)  I think my concert days just might be over.  I can't say never, but it could be a reality. 

I am feeling much better lately and have not had to use any of my prescribed narcotics for several days now (Since Friday).  Thanks to using my vaporizer and all the friends who help me out; what would I do with out all of you?  That is just another reason I live!) 

Peace and Love to all of you!)

Radiation has started on Palin....

Since my radiation treatment was at 1:15ish; my sweet nurse stopped by to check on me at  around 8:30am yesterday morning; mostly to check my medication intake (we record everything on one of my very special spreadsheets that I came up with and it's so easy to read; it even includes pain levels when ever I need to take any pain medication (1-10). 

After my nurse had left; I took Blue Belle and Tonto on their walk as both were very, very well behaved; Tonto was so grateful to be able to go outside (he skipped a day = Daddy gets embarrassed and does not want his sexuality in question while walking a cat  (he thinks its gay!) ; but this cat is very beefy and masculine? How could walking Tonto be Gay? I just don't get it?)  I just    don't get being gay with walking cats or masculine beefy cats like Tonto?)  He is like a Bulldog!) I  guess I will never understand?  He is the Bulldog we have both always wanted.

Well Tonto was so happy to be walked that he actually allowed for me to clean up after Blue Belle and walked ahead of me in order to take her poo bag to the dumpster.  We had another dumpster diver in the garbage where I accidentally threw Blue Belle's poo right onto his back by accident.  I told him he needed to leave and that this is private property.  I felt bad but I saw this person daily and I just know that this person had a problem.  I wish our city could better fix people such as this.  I need to have a degree rather than an understanding of these people?  Somehow I feel my words of wisdom just help them?  

Maybe I am dillutional about that?  I have read several books on hoarding and even noticed some tendencies in several friends and even my own mother.    I did ask him "Do you live here and if so what unit number do you live in?"; of course he did not live here; more than likely he was a hoarder which unfortunately is pretty common   with people of his age and dress style. Most hoarders feel that they need to gather as many possessions as possible and will even look at most things that you and I would consider garbage or useless as something they could use at a later time.  I also have a neighbor who lives like this as well and has even admitted to me her problem.  I sure wish there was something that I could do to help her.  I did read a really good book on hoarding and have come to understand it and it did have one line that could help many of these hoarders "I have yet to see a Hearst equipped with a U-Haul hook up".  You just can't take physical possessions with you when you die and it's mostly family members who have to pay thousands to clean out all the junk; because most of it is junk.   The illness is also linked to Obsessive Compulsive Disorder (OCD).

Well after the nice little walk with Blue Belle and Tonto; I got a phone call from a  very good friend who just happened to be in my neighborhood and is hardly ever this close by; so he stopped by and dropped off some very special medicine which really helped me to digest my breakfast; I have been loosing more weight more than likely due to Palin (my tumor) or maybe even my pain pump?

I figured that this photo of the actual Palin being strapped in a car; could be the best analogy of my tumor also called Palin only its strapped in my body ready to be zapped by the radiation!).  I did finally start the radiation process yesterday on my tumor Palin.  Most of the appointment involved some tattooing on my tummy and lying flat and still on a very cold table with that pillow that simulated a butt pillow for hemis.   I had to lye there for so long with my arms above my head holding onto these two sticks or levers (I'm not quite sure what the analogy of those things are; but they were like levers placed above my head for simply holding on and ensuring that I stay still); my left side started to get really sore from the metal that was on the table that the radiologists had to stop and add some padding for my little bony ass.  They had to move me a little bit and that wasn't hard at all since they did tell me that most of the time they have to get about 5 people to move patients and that two were enough for me and they did it so easily.

This is very similar to the machine I was sitting on only the one I was on seemed like it was moving me inside a dark cave; if that makes any sense.  I'm mostly describing this for others who may seek the same treatment. 

Finally after being marked on, then little needles poking me; I was ready to be microwaved or so it seemed inside that big radiation machine.   I could tell that being microwaved or at least that is what it seems; that I will eventually feel some burning and just a little bit of pain in that area but hopefully this Palin will die and go away as we wish this other delusional Palin would go away too but she loves the attention of being in the public eye too much.

WARNING WHAT YOU ARE ABOUT TO READ IS VERY PERSONAL BUT  IT IS ALSO EXTREMELY HONEST ON WHAT I AM DEALING WITH IN JUST SURVIVING THIS CANCER.
 

I'm really not sure what it is but what ever it is; is causing me to have to vomit at the very same time that I am sitting on the john.   Sometimes I can't help but squeal at the intense pain (pain level 9 out 10); it scares my honey to death when I do this; so I try very, very hard not to scream out in pain.  I usually have to have my honey's holy bowl with me when I go to the bathroom and when I sit on the couch; I never know when my intestine are going to jerk like that (its very, very intense); I mean it could Palin (tumor)?  I didn't vomit much yesterday after the radiation, but that just could be because of the good pot a friend gave me.  Sorry that's just the truth.  I used my vaporizer and smoked a rolled joint and after that I had NO nausea or pains;   OK, maybe just a little; but I did get the usual diarrhea of the day (prior to smoking); that sucks but at least I am still alive.  I just have to deal with life's little inconveniences; at least I am not in the hospital using their fiberglass toilet paper; I get to use Charmin ultra soft and even baby wipes and Aloe Vera lotion when it gets too painful and it does!  Well anyway, I slept very good compared to most nights where I am up all night long; running to the bathroom constantly; mostly to pee and to poo!  It sucks; but I'm alive!  That's the important thing.

By the morning; most often I am so incredibly exhausted that I can't wake up when my honey is up and getting ready for work.  This morning I felt much better.  I'm working with the cannabis and just eating small meals through out the day and not raiding the fridge as I have to admit I had been doing; hell I think anyone would puke if they ate like I have doing?  I just have to smoke before and after I eat so that the nausea never takes effect.  I think cannabis is different for me than it is for most recreational users; it gets rid of pain, nausea, and dehydration causes but the extreme diarrhea.

The only reason I am proud to show all of you my ugly nasty; pit hair looking photo (nooo I do NOT have pitt hair!) of my decrepit tummy is because I AM STILL ALIVE AND PROUD TO BE!   Please do be happy your tummy does not look like mine; I just don't care at all; I have someone who actually finds this attractive and he's all I care about; he is the best!

Not so sure if any of you can read the text  in this photo on the left; yeah I guess I look fat, but believe me I am not!   that I wrote on my body trying to label Palin, which is on the left, then the round protruding hockey puck looking thing is the "Medtronic Pain Pump is on the right, then the Tube at the top is a "Gastric Tube" it isn't at ALL for feeding or taking any kind of medication; much like my ass; it only for items going out;  well, yes I do pump water into the hose (everyday) and then that in turn takes out pressure which is gastric fluids that may be causing my stomach extreme pain from probably gases?  I use a urine bag to catch all the stomach acids and this is done every single day or I just pump about 50ccs of water into the tube everyday.   I'm not sure, but the decompression does keep me out of the ER in that I don't have to get an NG tube stuck down my nasal cavity which is a very good thing; those things suck!  If I don't pump water in; it could close up the hole (which is much like a pierced ear = wow a hole in my stomach!).  If you click on the picture; I think you should be able to read my labels of my ugly looking tummy; just be thankful that your tummy does not look like mine and yes I did find a man who feels that my tummy is the sexiest tummy ever!  So that's all that matters to me!

Anyway, I got my appointments (for radiation = 10 in a row)  at a time that works best for my honey and I; he won't allow for me to bring Miss Blue Belle; I was thinking she would be great in the Radiation waiting room with all the girls awaiting their radiation; many are just stuck working on a puzzle and some I have seen sit there and they seem to look terrified in a corner; I always try to cheer the women up or to crack them up with all of my crazy body functions (that have especially happened since all of these darned surgeries = what ever keeps me alive!) of my body.  My body seems to make the craziest sounds and I have yet to be able to make some loud farts; (forgot; one night last week I did; they were very musical!)  only stinky and silent ones and I always warn others when they happens (only if they are silent deadly ones); I'm sure they are deadly! Cancer Farts  Only I am calling them Palin Farts; blaming this tumor for everything that's going wrong in my body; I can't wait until Palin (tumor) dies and gets out of my body (that would be cool if I could just poop it out!); I can't wait until all of them go! Here's to a cure!  We also need a cure for ignorance as well!  That seems to be a huge problem even in the media.  American news can most of the time not be trusted in that it is mostly Propaganda.  We see that just in making cannabis (which helping in keeping me alive) illegal; was based on lies and propaganda.

For those of you still interested in teaching your cat how to walk on a leash:























I wish all of you Peace and Love!  No more anger and aggression!