WARNING: Some of the Content here may be Objectionable to some. I have this blog labeled as "Adult Only" as a common courtesy for those who may easily be offended by Adult topics such as the Truth, Down to Earth topics, realities of living with Ovarian Cancer and/or any life threatening disease that goes along with it; Sexuality, Medicinal Cannabis, Profanity, and of course plenty of unpleasant body functions are also discussed here. This is a very tough battle for which I don't intend to hold anything back on what I am facing.

This blog is very personal and comes from the heart of a real fighting cancer patient who wishes nothing more than to live for all of those I love my own will to live, and my love of life. While sometimes I might be on heavy medication (prescribed by my doctor) and occasionally I might write about things or subjects that one may never even think about or consider; so please consider that as well. Yes; whacked out things might even be found here; but I mean everything in all good intentions.

This blog is not at all intended for the faint hearted, those who lack a sense of humor, have no idea what down to earth means, greedy mean people, and/or those who don't know how to share the world with others, and especially those who are unable to easily put themselves into the shoes of others. This blog is mostly about my journey of living my life in the best ways that I can under the Golden Rule and appreciating all of the GOOD KHARMA that comes my way! Never take anything in this world for granted; especially family and friends!

Monday, August 23, 2010

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!)

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mikey666 said...

Sorry you're not feeling well. FYI, they're playing tomorrow night as well in SF (Slim's).


Anonymous said...

You are the most resilient, courageous, and beautiful woman ever. You are very skillful, enterprising, and lucky to have those qualities and ways of coping! I try to learn from you in that way. I have never been an optimist myself, so even the smallest difficulty seems much larger than it is, which is kind of an unhelpful way to go through life.

Sending healing thoughts for your tummy and blasts of cold arctic air for your skin! Feel better soon.

your friend in sac

charlotte said...

excuse my english. i think youre a very tough woman that probably helps a whole bunch of people with similiar diagnosis

Brandy's Big Bargains said...

You are truly an inspiration to others. I love reading your posts, and when I think I am having a bad day, I always find myself thinking, about what you would say. Thanks for such honesty!

coffeemaiden said...

Jayne, you are absolutely incredible! And so is your wonderful honey! You inspire so many and you're completely unaware of you dramatic impact on all of our lives. You still bring out the Mama in me--I worry daily about you--but I feel so honored to have read your blog for as long as I have. I feel like I know both you you and your darling Blue Belle and Tonto. Keep up the fight. We're cheering for you.

Movie & TV Show Preview Widget


My techniques and treatments work simply for me and may not produce the same results for others. Cancer is a very tricky disease in which it is very different in everyone it touches. No two cancers are the same just as we humans are not the same. What works for me may not work for others.

I love life and expect to live for as long as I can. I intend to use those treatments that do work for me which includes medicinal cannabis. I'm still alive with this disease over 7 years later because of this miracle plant and as long as I have my medicine available; I intend to survive many more years. I hope one day the Federal Government will eventually grow up and be led by true leaders who represent the people and not just coorporations; real people who live by the Golden Rule "treat others how you would want to be treated". I also hope the Government of the US can finally learn to admit that it has made a mortal mistake in making this life saving plant which is provided by GOD and does indeed have the ability to provide all of us with food, fuel, clothing, shelter, and medicine; a mistake that have made is that it is illegal. Yes, it was a mistake out of greed, ignorance, and racism that this miracle plant is illegal. This is a confirmed fact and we should all know and face it.

Cannabis is not at all harmful and in fact quite the opposite. Perhaps our economy can once again grow as it has in the turn of the century by making this life saving plant legal once again.

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