Tuesday, November 30, 2010

You Glow Girl, Boom Boom Pow

Sometimes you just have to say enough is enough.  This happens often in Cancerland.  Even with all these well intentioned medical professionals focused on getting the job done, killing the cancer in my body.  They are often so focused, on one particular area, it's easy for them to lose track of the rest of me.

Hello, I'm up here, look up and away from my boobies, yes, that's it, here I am.  Now listen...

Sometimes you have to raise your hand and let them know how all of this is working for you, and when it isn't.  There are so many ways to go about your treatment, and you need to be right in there, giving input every step of the way.

Sometimes I hesitate, especially when starting a new treatment.  I listen intently to their outline of how everything will go, but when it starts going another way, I think "Is this right?"   I have often raised my hand to say "This is really hurting" or "This is very uncomfortable" or "Can you help make this easier on me?  Here's what my issues are."  This is one of the things I've gotten much better at since my diagnosis.  It is not always easy to do, and requires practice if you've been the kind of person I am.  I'm usually concerned about making things better FOR OTHER PEOPLE, not myself.

I can't stress enough how important it is to be your own best advocate.  Raise your hand.  Speak up.  Ask questions.  Make suggestions.  Nobody can look after you better than you.  There is absolutely no reason to needlessly suffer if treatment will allow small adjustments be made, but you have to speak up.  I have encountered this throughout my treatment.  I shouldn't have been surprised when it happened again starting radiation, but I was!

I was foolishly thinking now I'm finally to the easy part and things will go smoothly and I can relax a bit and surf.  Not!  I got home last night so cranky, and woke up this morning with such apprehension, I thought I was going to have a panic attack.  I haven't had one of those in years.  I used to get them over twenty years ago when I was commuting to San Francisco on public transit, namely a charter bus company taking riders from Marin, across the Golden Gate Bridge, and into the Financial District.  When the bus was full and I'd have to sit at the back or crammed in, I'd feel very claustrophobic and I finally had to find another way to work.

Here I was this morning, laying in my bed, shocked thinking "I feel a panic attack revving up.  What the fudge?"

It all started last week with my CT scan and tattoos in preparation for radiation.  If you remember I was there three hours while they tried to figure out how to best position my breast to receive treatment.  I really had them stumped.  As I've said, they either usually see a skin sparing with implants, or a complete mastectomy.  Treating those is routine for them, and much easier to position.

My breast has been a real challenge and they've said so and I've seen it.  The goal is to make sure I get the dosage I need, only in the areas I need it.  They want the field of radiation as tight and concise as it can be.  It took them several hours of positioning and repositioning, and I left so sore and tired, and still not sure if the goal had been accomplished.  My scars under each breast are still healing and very tender, so is the inside of my breasts and the left arm.  All the roughing up has been very difficult.

Yesterday was my first day of treatment.  I was there another two hours.  Almost a repeat of last week, but even more uncomfortable on the tray.  The back of my head and neck really hurt, my feet hurt, my boobs hurt and my left shoulder was so tight and painful.  I was so uncomfortable during the procedure, frustrated by all the attempts and failures to get my boob to behave, by the time I started treatment I was past the limits of my patience and discomfort.  Unfortunately, they were also running behind so that added to the mix.

By the time I got home after 6 pm, I was so cranky and frustrated I could spit and cry.  The boys knew as soon as I walked in the door.  Mama ain't usually cranky.  Mama is usually cheerful, funny, and demonstrative.  When Mama walks in the door barking?  Save yourself Man!  Get out of the way!  Take cover!  The men in this house dive behind couches, hide in cupboards, and roll themselves up in rugs.

Ok, not that bad.  Maybe.  Wanna know sumpthin that drives me nuts?  When 98% of the time you are easy and pleasant to be around, and then you have the occasional 2% all fired up, you ever notice how a huge deal is made out of it?  People are so used to you smiling and making them feel good, that when you aren't all chipper, they get all crazy like you threw 'em a curve ball.

Now if Dad is cranky, the boys don't make a huge deal of it.  Oh, Dad is cranky.  Saying it is redundant.  If Mom is cranky?  They get their feelings all hurt and they are like "...but Mama, why you so cranky?  Mama?  You can't get angry or frustrated cause you are Mama!"

I explained to Husband about what happened at treatment, and of course, he got all fired up, not being there to protect and fix and serve.  I know your intention Husband, but when you start barking back at me cause you can't stand what I'm going through, it doesn't help.

I woke up this morning knowing I had to speak up in a big way.  I couldn't have every damn day before radiation feeling apprehensive and anxious.  When I arrived for treatment today, I told them I'd like to speak with Dr. Lotus.  She wasn't in yesterday.  We had not spoken since my appointment last week.

When I went into the radiation room, I explained to the techs about the discomfort I had the day before laying on the tray.  First of all, it is absolutely ridiculous how uncomfortable that thing is, and laying a sheet over it doesn't do a damn thing.  I placed my order.

I need more cushioning under my head and support of my left shoulder.  I need to be able to rest my arm if they are going to take a long time positioning me.  I need support under my knees and under my feet, and yes, all the warm blankets you can put on me.  That ace bandage you've strapped me to the table with is so damn tight across my breasts, I need something between it and my skin. [Yes, only Flopsy is getting treatment, but poor old Mopsy is right in there with her restrained.]

When you've never done this and you don't know what to expect or what accommodations can be made for you, you just lay there and take it.  That's what I did yesterday, and on the CT scan day, and I wasn't going to do it anymore.

I realize now, every step throughout my cancer treatment, is a human process, human error happens.  It should also be an organic process, there are ways to do things better.  Why not start with me?

The staff was very understanding and made notes on my setup after we got it together.  Today I was positioned and relatively comfortable, and done with treatment in less than thirty minutes.  Big diff from CT scan day, over three hours.  Yesterday's treatment?  Over two hours.  Both of those times with far more pain and discomfort than today, and that's because I took care of me.

When I finished, they took me into an exam room, and Dr. Lotus came right in.  I told her I had asked to speak with her today regarding some things that were of concern to me.

First, the length of my first two treatments, and all of my discomfort.  I explained to her I took care of several of the issues myself today, telling the techs what I needed.  She said that is good and expected, and the first few treatments are always the hardest, but especially in my case.  She was confident we would get into a comfortable rhythm soon, but welcomed any suggestions I might have.

The calendar of treatment I was given was significantly longer than what she and I had discussed.  I thought I was supposed to be done the first week of January, and the treatment schedule showed completion January 17.  She explained that after considering my case and discussing it with a colleague, I will have the 28 treatments we discussed, but I may need what are called boosts.  This could take me up to 33 treatments, the five additional would be boosts.  The boosts are where they target a specific area they are concerned about and radiate it a few more times.

I have an area in the outer quadrant of my breast, heading towards my armpit, that had "close margins."  That means when my surgeon, The Wizard, removed the cancer in my breast, he tried to get a safe margin between cancerous tissue and non-cancerous.  In my case, I had an area where the "positive" margin, or area with cancer, was less than 1mm from the skin.  This is the area they want to give a boost to.  It's fairly close to my remaining lymph nodes and they don't want anything else spreading over there.

Dr. Lotus explained my skin may not tolerate the length of that treatment.  I may get so red, sunburned, raw, or have open flesh that they would have to stop treatment.  She explained that even if we have to stop for those reasons, I will still have received what I needed.  It is as if the skin tells you when maximum dosage has been achieved.

The last item I wanted to discuss with her is my concern about being their "guinea pig."  Was she confident that my breast was being positioned in such a way that I would receive effective treatment?  Is there a margin for error that I should be concerned about?  What I mean is, the positioning of this breast is like something out of the game Mousetrap, and I really don't see how it will be exactly duplicated each time.  They have basically rigged a contraption using bubble wrap and tape and ace bandage but it is very crude.

I told her I felt as though I was getting state of the art, Star Wars technology, but the way my breast was rigged was like a MacGyver show.  The two together really had me concerned.

At that point, Dr. Lotus pulled out my binder (not a chart now, a binder) and showed me on my CT scan where they need to radiate, what they were trying to avoid, and that small changes in how my breast is positioned would not effect me receiving the dosage, because the breast is still within the radiation field.  What it could affect though?  How my skin does.  Skin on skin during radiation is a real problem.  I have lots of wrinkles and folds in my breast and a good part of their efforts are to get what's left of Flopsy as flat as possible.

Dr. Lotus explained that we may still need to do some tweaking, but things will go much quicker now, and I should continue to speak up to help the techs with my comfort.  I felt so much better after today.  So much better.

Add this to your manual on Cancerland.  Don't ever count on things going like they say it will, or what the Internet describes.  Glitches are the norm, discomfort is too but can sometimes be helped with small fixes.  You have to look out for you, and don't hesitate to speak up if you think something can be done better, easier, or less intrusive.

And for gosh sakes, if you need radiation, make that tray you'll have to lay on as comfortable as you possibly can, cause you'll be on it, days and days in a row, weeks on end, having to lay in awkward positions, hardly breathing!

A little radiation trivia for you.  Did you know the door to the radiation vault weighs 4,500 pounds and all the walls of the room are solid cement?  They are working awful hard to keep that stuff in, the same stuff they are shooting right in to me.  Yikes.

Glow Girl.  Beam On!

Gee, did I scare y'all with Glow Girl's mission?  Poor Mft is worried about her Hubby when they come to visit.  Even my brother Ronald was a little worried about the fallout from the bad pee pee's hitting the good ones.  He wanted to be assured I am accurate with my targets.  He's seen me throw a ball and bowl.  Midge's comment was the cutest when she said "How's it glowin?"

Don't you good citizens worry.

How much damage could a 5'2" spiky blond coming off five months chemo, boob mutilation and hormone annihilation do when she's powered up with enough radiation they usually like behind a 4,500 pound door?

I like that boom boom pow
Them chickens jackin my style
They try copy my swagger
I'm on that next shit now

I'm so 3008
You so 2000 and late
I got that boom boom boom
That future boom boom boom
Let me get it now.

http://www.youtube.com/watch?v=4m48GqaOz90


  

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