Friday, October 17, 2008

Im burnin, Im burnin, Im burnin for you

Yesterday I went to the radiation center. I was so afraid and alone my skin was crawling. What you say...she was afraid? how could that be? Well chemo scared me yes, but for some reason radiation scares me more. I guess because I know it could compromise my physical comfort zone. I mean I purposely stay OUT of the sun to avoid sunburn because it makes me so miserable for so long, make me nauseous, itchy, not to mention the pain of burns. Yes I am afraid, and yes I am a big wuss so sue me.

My youngest daughter went with me to all my chemo sessions and I got through them like a breeze, lucky me. There were times I was having problems but I am tough so I made it through. I will make it through this too but yesterday no one in the world could have convince me of that.

So anyway, on the way naturally I was listening to my very loud radio on my favorite classic rock station, and they started playing this song that in the beginning didn't quite register. You know how you listen to music and just sing along and don't really pay attention? Well I got to the chorus part and it hit me. How freakin ironic this song is playing, and I didn't know if I should laugh or cry so I did what any red blooded woman would do and did both! Ha ha yes I know silly but nevertheless ..... so anyway

If you want to hear the song click on the music box top right of page

And here are the lyrics
Home in the valley
Home in the city
Home isnt pretty
Aint no home for me

Home in the darkness
Home on the highway
Home isnt my way
Home Ill never be

Burn out the day
Burn out the night
I cant see no reason to put up a fight
Im living for givin the devil his due
And Im burnin, Im burnin, Im burnin for you
Im burnin, Im burnin, Im burnin for you

Time is the essence
Time is the season
Time aint no reason
Got no time to slow

Time everlasting
Time to play b-sides
Time aint on my side
Time Ill never know

Burn out the day
Burn out the night
Im not the one to tell you whats wrong and whats right
Ive seen suns that were freezing and lives that were through
And Im burnin, Im burnin, Im burnin for you
Im burnin, Im burnin, Im burnin for you

On with it, I went and was promptly put into a room with two men. They were stranger and I was nakie from the waist up. Does the word uncomfortable come to mind? I know they are professionals, and have seen millions of boobs before me, (ha ha) not that I am a boob! but hey they never saw mine! and mine never saw them! So yes I was uncomfortable and embarrassed. You would think that I would cease to feel this way after all I have been through but there it is.

They went on to explain how this was going to go, the drawing of lines with a sharpie marker all over my chest, then the laying of the thin wire, going into the CT machine and then meeting yet another doctor who would come in a speak to me. After all that the tattoos. Yes they drop little blobs of ink on you and take a needle and poke ya in the weirdest places leaving permanent marks. Looking at them now I wonder how they will tell which are freckles and which are tattoos? I suppose the redness will eventually subside. So my chest now looks like a dot to dot page from one of the kids activity books. Talk about graffiti! a new body art form "boob graffiti" interesting concept.

A Decision Was Made
I made a rather important decision. No one was there but the doctor and myself as he explained that I should consider getting radiation to my lymphnodes. Ok well I thought this was already worked out so it came as a surprise to me.

Lymphnode radiation is highly controversial he told me, and sometimes it helps and sometimes it doesn't. So ok my mind is lacking at this point so I ask him what are the consequences? Definitely more problems concerning lymphedmia in my right arm and side. Explain problems? well you could swell up to 4 or 5 times more than it is now. Question from me - would I still be able to do detail drawing, writing, using my arm? Answer - not sure but there is always physical therapy (yeah for the rest of my life). Ok I say, give me percentages please. Hell he doesn't know I suck a math especially percentages but what the heck I thought if I acted smart he may tell me more. He was definitely going for the YES answer. So he told me, one really knows for sure yet, it is still experimental but, 10% is the bottom line. So that is 5% that it will help, and 5% that it won't? yes he said. So my decision is that NO I will not endure radiation to my arm or lymphnodes. It is a chance I am willing to take, however I can't say this choice would be the same for everyone. He said that there is a chance that cancer remains in my lymph system, but if the chemo didn't get it and there is no way of telling, then to me it makes sense that if - that little f****er is still there it has long since travelled to other places. I will just have to deal with it then. Oh and did I mention the cost? OMG! between $1200.00 and $30,000.00 per treatment and with no insurance I won't even live long enough to pay it all, even if I make it to my 90's! Add the rads to the lymphnodes and up that anty again. So I am not usually a gambling person but this time I am taking my chances and pray I am right.

After all that, I had to remain completely still as I went into the tube while it clicked and clicked. That was nothing, I am not claustrophobic and the hardest part was to be still. I swear the blood on me pools if I remain in any one position for more than say 5 minutes. I did it though with the threat of "or we will have to start over!" ha ha no way jose' I will not move no matter how painful. They practically had to lift me off the table as my back was frozen by the time we got done. The good news is that during the actual radiation it will be no more than 11 minutes and no less than 5 mins.

My bobbie shots went before a panel of "experts" to determine the least invasive angles in which to radiate me. They will call me in a week or less to give me my actual schedule, because once you start they don't want to stop unless you have an emergency situation or become ill. The techie guys, yeah I forgot their names told me that I am not allowed to diet and must eat properly. It appears that the weight loss that I may have is because radiation burns calories - alot. They said I will become more tired but they think because I handled chemo so well that I will have no problems with this. I am not a complainer usually and I try not to bi**h alot so they said I will do fine, bite the bullet and ride the wave to recovery. Ha ha so poetic.

After that I went to the billing managers office. I figured that was coming. She kept me a long time, very nice lady. I won't go into the details but I have to agree to a payment plan and stick to it. She told me about going to CFS to apply for Breast and Uterine Cancer insurance from the state. Well dang, no one told me about this being offered before. Not sure I can qualify because I didn't qualify for state assistance before because of $7.00 - yes that's right seven. There are a few other things I need to check out too.

On the way home guess what song was playing? (answer below)

All in all my visit lasted from 11am until 2:30, got home at 3pm exhausted. Skipped eating all day and took a nap instead. Zzzzzzzzzzzzzz.

"We are the Champions" by Queen one of my favorite groups!

Friday, October 10, 2008

Just Wanted to Share

I read this on one of my list this morning and wanted to share it. Since I have no real news to share about me or mine thought this would fill in the blanks, and it so mirrors my thoughts even though I did not write it.

Note: This poem was one of Audrey Hepburn's favourite poems to quote,
and has been erroneously attributed to her. It was actually written by
Sam Levenson and read by Audrey Hepburn on Christmas Eve, 1992
and also on occasion when she was asked for beauty tips.
[From Audrey Hepburn by Barry Paris, 1996, Putnam]

Audrey Hepburn although before my time was one of my most favorite actresses to watch over and over again. I have to admit I am an old movie lover.

Time Tested Beauty Tips
by Sam Levenson

For attractive lips,
Speak words of kindness.

For lovely eyes,
Seek out the good in people.

For a slim figure,
Share your food with the hungry.

For beautiful hair,
Let a child run his or her fingers through it once a day.

For poise,
Walk with the knowledge you'll never walk alone.

People, even more than things, have to be restored,
renewed, revived, reclaimed and redeemed;
Never throw out anybody.

Remember, if you ever need a helping hand,
you'll find one at the end of your arm.

As you grow older you will discover that you have two hands;
one for helping yourself,
the other for helping others.

By Sam Levenson (1911-1980)
From his book: "In One Era & Out the Other"

Saturday, October 4, 2008

And So Life Goes On ...a breast cancer soap story

"I am the one who is strong enough to carry the life that God has given me" I don't know where this came from but I like it, I feel it and I borrowed it. If I am overstepping here someone tell me.

Ok well I went for all my appointments this week and don't know a whole lot more than I did last week.
Chemo is done for that I am truly grateful! I am totally exhausted and sleeping alot more for some reason, my nerves are a bit edgy as I get closer to radiation. Silly I know but anything new upsets my self lately. Still in my mind I am doing the happy dance that no more infusions. I wish they would take my port out but they want to leave it there "just in case". Ha just in case well I don't plan on a "just in case!" Wondering how far the mind can heal a person before she looses the mind? ya more dark humor that few understand.

So the new radiation doctor was very nice. I hope they don't switch me again, as I said I don't deal well with changes. I miss the original doctor, she was the bomb! On the 16th I will go for a simulation, this is where they do everything to get you ready and do a mock radiation treatment. The next day will start my treatments that will be for every day at the same time. The doc said that I can expect to feel like I have a bad sunburn on my little itty bitty. Ya I say easy for you with the dark skin. I have paper white skin on that area and oh I don't like sunburn. I guess I need a gallon or two of Aloe Gel and some creams. I have a few to try so try I will. I had some BP problems while there but there was good reason, however in spite of that she decided to give me some anti anxiety drugs, nothing much just a little something to take the edge off.

What got me going before the appointment was this. I was about ready to leave and just outside my door is a strung out little chick with her ginormous pit bull who was about to take a crap in my yard right in front of my porch. I see her and start yelling "ARE YOU LETTING YOUR DOG SHIT IN MY YARD????????????????????????" along with some other bad words. She just looks at me and says "oh sorry" so I ask her if she would like a bag? and she said no, were ok. Well this sent me over the edge more than a bit. I know I scared the crap out of her and the dog obviously because his turd went right back up where is came from and they moved on down the street. I mean come the hell on! I would never consider letting my dog do that whilst on a leash especially! I think the girl was a bit "cracked out" she looked it unless it was pure fear. I have had a problem with this dog before he likes to get on my porch when he gets out and pee on my chairs. I don't know where they live but when I find out, I may be calling someone to make her understand the facts of life of living within the city limits with a dog. As you can see I am still PO'ed.

So I am driving to my doctor's office that is less than a mile away and get behind a long stream of traffic. Ok well that is pretty normal in the am around our little town. No problem, the sign is posted 25mph. Well behind me is some big wheeled black truck with loud rap music playing and suddenly the music is off and the driver starts yelling at me out the window, followed by gestures of all sorts, name calling, etc. HELLO!!!!!!!!!!!!! is it my fault the speed limit is 25mph? Is it my fault all the people in front of me travel to work at their own pace? heck no so do I take all this abuse? Hell NO! So I just gesture back as any red blooded, already stress out woman would do. So this truck guy decides he is going to take a side street and try to cut people off. Ok I think good luck with that, it's your dream make it whatever you want. Low and behold the person when he gets there to cut off just happens to guessed it me! Again I am like oh Hell NO! I speed up a bit and oops he can't cut in without hitting me or the car behind me. Ha ya trick, though you were gonna one up me did ya? Ok so I am sometimes a bit extreme but damn I get just as irritated as the next girl and was feeling my Cheerios. I continued on to the doctor and the results were an agitated, higher than normal BP so I was pardoned after I explained it.

Yesterday I went to a church. It was to meet with someone that Social Security wanted to do a mental health check on me. Well not sure how I did but I am here to tell ya, I don't think I could pass the test on a good ole normal day! I mean who was the president in 1879? how the heck should I know, I was absent from school that day. Guess what the guy asking didn't know either because I asked him ok well who was it? No answer, well either that it is hidden by the Pentagon or something of the secret service dept. Geesh! I had around 4 hours of testing, and it was about math, which I truly suck, and the order of things, playing with blocks, remembering too much (not my strong point) so on average not sure how I scored. That is another secret. He dug into my brain, until it made me cry. His questions about my brother, my mother, my family in general. Then asked me if I was depressed? Well gee whiz I wasn't until I came here! you jerk! Truly I was happily skipping along until that little interview and testing. Trust me it does nothing for your self esteem. So after all that I was told to go home. Will I succeed in getting disability? doubt it. You know that really frost my pumpkin! If I was a drug addict or alcoholic I would get it, if I wanted to pretend to have a pinched nerve in my back or neck I would get it. I just want a little help until I am able to work, it isn't like I am ready to retire. Our government truly sucks ass.

So in spite of the above mentioned. All is well. On with my life and try to make each day a new one. I am starting aging of thinking about my crafts and drawing all the things that make me happy. I just need to get my hands and feet working properly so I do more than make a mess. My hair is starting to grow in, it is very curly more so than before. I think I will need the industrial flat iron in the future. Not sure of the color as it seems to change every day. My fingernails are still striped and very breakable. They are sensitive too, kind of like when you break a nail way far down, you know that icky feeling you get? I still have the needle jabs and numbness in my lower limbs and hands and the lymphedemia is still present but manageable. All in all considering what I have read from other BC persons I am doing quite well. It all a day in the life of survivorship.