Normalcy. Hmm. Not exactly.

Just when I began to feel my first hints of normalcy in life and health, I had to, against my better judgement, go, and show back up to this…. GAP (you know, the GawdAwfulPlace that I will have to keep coming back to every 3 weeks through December…the oncologist’s place and the chemo room). Today was a bonus day too, in that I not only got to see the Oncologist himself, but also got to also see the radiation oncologist’s nurse so that she could check out my burned skin.    Good news on the radiation end of things is that, as you may have noticed from last week’s countdown, radiation, itself, is over.  The burn, however, is improving in some areas and worsening in some areas.  It is also actually hurting worse on the inside.  The muscles under the skin feel kind of like cooked meat, if you will.  Overcooked really.  They feel tough and stringy.  You know how I am not impressed by overcooked meat.  Good news on the oncology end of things is that the oncologist actually accurately dictated everything I could hear him say today! And as far as we know, I still do not have Cancer!   On the more disturbing end of things, I still get to start the new oral chemo drug, Tamoxifen, this week.  I am scheduled to be on this drug for 5 years.  Sounds overwhelming, especially when the doctor and the pharmacist review the side effects…” some people just don’t feel good…” said the doctor.  “Like what”, I said… ”well, it could be a whole host of things…you’d have to go to the PDR (Physician’s Desk Reference) to see them all”, he says…”Greeaat”, I thought to myself.  Of particular note is the possible WORSENING HOT FLASHES, Increased Risk for Blood clots and therefore possible pulmonary embolism which could lead to death,  increased risk of endometriosis and endometrial…you guessed it…CANCER.  But, since I’m on a lucky streak lately, I’m feeling pretty confident none of these will apply to me. J  I forgot to ask if, my plans to begin training for, and running a very difficult 50 mile race was going to be a problem.

Oops. White count back down below normal. Darn.  Red Counts about the same as last week with HGB slightly up and RBC slightly down. All still in the below normal level.

Now for a quote that I saw recently on the internet that I liked: (I know, what’s up with all the quotes lately? I must be in an introspective phase.  Note to  WWFFss...I’m out.  Except for Olyveoyl.  Sorry, it’s been a great run, or rather something to do instead of running…I love you all but my time is up). Back to the quote:

“The only dream worth having is to dream that you will live while you are alive, and die only when you are dead.  (Do to the author’s use of the word ONLY, it might seem like the quote would end here, but it does continue on with some more pretty good stuff.) To love, to be loved. (Good one.)  To never forget your own insignificance. (Easy enough).  To never get used to the unspeakable violence and vulgar disparity of the life around you. (Not a problem).  To seek joy in the saddest places. (Doing that now).  To pursue beauty to its lair. (I’m not sure what that means.) To never simplify what is complicated or complicate what is simple. (I’ll need some work on that one.) To respect strength, never power. (Not even PowerHowell? Not sure I like that one.) Above all, to Watch.  To try and understand.  To never look away.  And never, never forget. (Done.  Unless the Oldtimer’s get’s me.)

--Arundhati Roy

Now, Here is a new, just fresh off the lips of the chemo nurse l quote that I heard just now:

”We’re so screwed today… that’s just the way it is”.

Frustrated Chemo Nurse

 

One.....Get Busy Living

I’ve been thinking since past Monday what this day would be like. Last day of radiation. I even fantasized a bit last week about what it would be like to have the confetti thrown in my hair.  While contemplating this new future,   I realized that as odd as it seems, for a person who has waited 10 months for this glorious day, there is some fear associated  with moving on.   Not simply the fear that maybe I could still have Cancer (despite my latest MRI results revealing "NED" - No Evidence of disease). It's more than just that.  It has to do with patterns and habits, and with change and with moving forward to a new life.  At this point, now I must move on with my life despite the somewhat temporary nature of this semi- "treatment free" (still must continue the every 3 week Herceptin Chemo through December) period between now and the future surgery (left mastectomy with bilateral reconstruction, which will occur sometime in the New Year).   As one might have guessed, today, the last day of radiation was somewhat of an anticlimax.

 I did get the confetti, I think like ½ a handful, and then, my good friend Lisa, who’s been there from the day of the biopsy, bought me some celebratory foot foam to alleviate these horrid cracks in my feet. The foam was actually pretty exciting.  I was blaming these painful cracks on the cancer treatment, but now after talking to her, it seems that it's possible that it just happened... Age, etc.  I mean, I AM honestly comfortable in my new “duster”. Why wouldn't it go hand in hand that I have old lady cracks in my feet?

See, this is what I'm talking about adjustment...

Please click on this utube link and picture me as Morgan Freeman's character.

http://www.youtube.com/watch?v=7tkzc983aE0&feature=youtube_gdata_player

Like Mr. Freeman’s character in my favorite movie Shawshank Redemption, I feel at times that I’ve been institutionalized by cancer and cancer treatment. Time and again, for the past 10 months, I've given in to the method.  I’ve learned to do what I'm told, wait, and accept treatments that just never seemed like a good idea.

I’ve been beaten down with intravenous toxins and I’ve gotten back up and returned for more... many more. I’ve been stripped of all my hormones, and they’ve literally amputated what I once considered one of my best assets. They've burned my skin, and left me tight, weak and vulnerable.

Armpit Right

Armpit Left

 

 I haven't been on a real vacation in a year.  I’ve learned to exist for this treatment.  It is sick, yet it has become what I know.  I've even found ways to take pride in things like... How still I can lie on the radiation table, or how few breaths I can take during a 30 second zap. I will have to relearn how to be free again, make choices, and how to blame things or problems on something other than cancer and cancer treatment.

I will have to get back up on that horse and ride out to and find my Zihautanho.

 Except, it is no longer safe to gallivant around Mexico so, I will get back up on my feet and find my New Mallorca. See previous post for reference.

My Mallorca (or Majorca)

Foreword:

This is something that I wrote a few years ago before Ace was born. I must have been Spring 2007, when I was really getting into drinking latte’.  I dug it up off my old computer and I’m sticking this in here, because it is something I think about often, and it will be referenced in later post.

My Mallorca (or Majorca)

Mallorca

(or Majorca) Spain   Spanish: Mallorca, IPA: [maˈʎorka])^[1] is an island located in the Mediterranean Sea, one of the Balearic Islands. Wikipedia.

For a brief moment on that Saturday morning after a rainy, late spring bike ride with an old friend and a "Skinny" Latte', I had it all figured out.  Life is what you make of it.  I will make Mallorca come to me. Wherever I am, will be MY Mallorca.  Must I own a commercial espresso Machine to make this so? Possibly.  That depends on my location.

I’ve been thinking a lot lately about my dream life, dream home, etc. I am, however, quite a bit more realistic than I used to be back in my rock and roll days.  Since Adaline,  I would say.  Not much compares in the way of life changing events, to finding out on the day of her birth, that your most beautiful daughter has severe brain damage.  Although I have recently learned that having a beloved son pass away, could do the same.  I mean, change your life, and your relationship with the world, forever.

I would never say that it has been great having a disabled daughter, and I would never recommend it to another person.  However, it is true that my daughter has made myself and everyone who has gotten the chance to know her, a better person. For me, I guess, it is about a true compassion, that I could feel for a brief moments before Adaline, but understand it on a consistent basis now.  She has also taught me about pure beauty, innocence and love.  Adaline will never do another person wrong, cheat, steal or lie.  She smiles when you are funny and she laughs when you cry.  She also makes, more apparent, the relativity of life. What is a bad life? Who is really well off? What allows happiness? 

 “The Secret” (success and happiness are in your control),  is currently (in 2007 anyway) a very popular idea.  I personally attempted to watch “The Secret” online. I didn’t have time to read the book, of course. I was pretty much sold on the whole idea before I paid my $4.95 and then was unable to actually get the movie to play.  I think it was going to be about the power of positive thinking leading to actual positive realities, etc. See it’s working on me already and I haven’t even seen the video or read the book.  I guess I should have believed more in my computer skills.

What is My Mallorca?  I’ve been to Mallorca, Spain.  It is a beautiful island off the coast of Spain where the beautiful people, the cyclists, and Michael Douglas hang out. 

 There is a Mexican slowness to the place, with the safety of a European spa.  The food is perfection (think fried Camembert cheese with fresh raspberry sauce) and the views are breathtaking. I remember when I was there (7 years ago) reading a short article in my travel book about Michael Douglas that was titled “Michael’s Mallorca”.  That was years ago, and for some reason that stuck with me.  Wow.  How did Michael get his own Mallorca?  Well, he bought a castle previously owned by Archduke Ludwig Salvator of Austria, which he renovated and now calls s’Estaca.

On this specific Saturday, it was also the very place that my old friend mentioned as what would be her perfect life.  I do actually agree that the Mallorca that I visited would be perfection.  However, how could I make that life work for me?  I am not a Spanish citizen.  I really only speak very poor Tex Mex, and my husband and I do currently work for a living.  I’m not even sure what jobs would be available in Mallorca, and would they pay enough for my daughter to attend daycare, or better yet have a nanny?

Maybe I already live in My Mallorca, and I just haven’t realized it.  I love this city. I love that know where they make my favorite latte, cappuccino, breakfast taco or pancake. I love that I can get fresh Italian style foods at Central market.  I love that I run on a trail around a lake in the center of town and watch the sun come up. I love that my running coach has given me a nick name, or is willing to pick me up at the finish line of a marathon. I love that my daughter is the most popular girl at the best school for children with special needs.  I love that my husband has a passion in bike riding and racing and has done well in local races. .  I love that I can ride my bike anyplace that I like to go.  It just occurred to me that my Bicycle was made in Spain and it is an Orbea ORCA.  MY ORCA. 

Afterword:

Since , I wrote this, I’ve discovered that Michael Douglas lost ½ of his Mallorca in divorce.  He’s apparently allowed to be there 6 months of the year.  He is also now a throat cancer survivor, so I feel sure he’s found the other half of his Mallorca in life somewhere else.

2……done….Confetti?

Wow.  One CANNOT call me a Pessimist after today, that’s for sure.  I walked in to radiation today, asked the desk clerk how far behind we were today, and she told me we were actually running ahead of schedule.  Really?  Then the nurse called me back to get changed.  She said go ahead and change, then wait in that chair… Uh Huh…..So, I changed and decided to go ahead and bring ePhone with me this time because the last 2 days I had left her secured in the A-2 and the wait without media was ridiculous. I had not sat down for more than enough time to catch up on Ellen’s latest 5 tweets and watched 30 seconds of the hottest pre-teen breakdancing group, and they called me back.  As I was walking into the radiation chamber, it was like everything began to move in slow motion.  I then caught myself looking longingly at a large glass container full of confetti.  It took me some time to register what it was.  While confetti on the floor is a very common sight in cancer treatment areas, I’d never actually seen the confetti in the container.  For several moments, I thought that the doctor was going to come in and surprise me, and say “we’ve decided to make today your last day.  You do not have to make up that day you missed for the cancer holiday.” I waited hopefully for that.  I lied down, arms up, head turned away and I realized that I felt somewhat uncomfortable that I actually desired that confetti.  I held still for the required amount of time, then got up, wished the nurses a good weekend and walked out....with my iPhone.

1 Left

“The pessimist complains about the wind: the optimist expects it to change: the realist adjusts the sails.”

William Arthur Ward

3....Done....Hat Trick

Today was another day of mental challenge, initially.  Again, full time childcare, and then break for radiation.  Again the double wait scenario.  Wait for radiation, and then wait for the doctor.  I was having real trouble being patient and may have said something out loud to the nurse about being frustrated with having to wait so much lately and needing to go to take care of my children.  The other nurse came in and decided to bump me forward and see me in the dressing room.  She looked at how my skin was breaking down and she offered me a day off, to be made up next Tuesday.  I declined.  I could not fathom dragging this out even another day. 

Then the day turned.  No, not yet, actually.  Once the sitter came, I then waited one more hour in traffic on my way up north to one of my favorite trails to meet my trail group, Tejas Trails.  I had run into the coach, Joe, on Sunday, and he had mentioned that he still had my hat, and that he and the group would be out at one of my favorite trails on Thursday.  He had been holding it (my favorite light blue Port O’Conner visor) for me in his car since my last trail race:  The Pedernales Kapt’n Carls 30K in August 2010 (10 months ago), 2 weeks before “You have Cancer”.

I wanted to go out there to see the trail again, to see the group again, to get my favorite hat, and to talk with Joe a bit more.  All accomplished and i had a great time.  Unfortunately, I believe it was the hottest day yet.  I checked the current temp just before I got out of the car, and it was 101. 

Anyway, today I received this photo of the evening from my friend (thanks Chuck!) that had been posted on FB by Joe himself.  

Tejas Trails Group
Many of these people have run one or more 50 milers, and a few have run 100 milers! Very impressive bunch!

 I’m shown near the center, holding my hat.  But, that is NOT the first thing I noticed.  I noticed what was missing, since the last time i wore this hat, and what you all will likely notice.   I also have, somewhere, (Lisa or David do you have it?) a very similar photo taken in the same spot in Nov/December 2009 when I had 2 breasts and hair, and I was in dam good shape, I might add.  Anyway, it got me thinking how this past 10 months has been kind of like a crazy hat trick.   Things there one minute, gone the next.  Fortunately, most of the time, the stuff under the hat isn’t that important, anyway.  And, if the trick goes right, the items simply re-appear.  Like Magic.

2 left 

4....Dry Heave

Have you ever gotten really drunk, or just really sick and thrown up many times over, and then suddenly you feel that you need to continue the vomiting, but there is just no more to give?  There is simply nothing left at the bottom of the pit, but there you sit, arms outstretched hovering over the commode, waiting.

Well, that’s pretty much how today felt to me, without the nausea. No, it wasn’t due to the fact that Jen, the Howell Family “Glue” is out of town and I was on full time kid duty today from 6:15  a.m. to 8:30 p.m. minus 1:30 to 3:45 (radiation and quick trip to WalMart) with 2,  10 minute rests.  This included but was certainly not limited to 15 or so dependent lifts,  2 pureed dinners, 2 one hour feedings with the complete use of 1 roll of paper towels, 6 diaper changes, 5 dependent clothes changes, cooking and cleaning up a solid food dinner, and fighting with a 3 year old to "go the f… to sleep" (http://abcnews.go.com/m/story?id=13598906).

Should I even mention the ridiculous trip to WalMart? Probably not, but I will.  I was there buying a new stroller for Adaline to serve as back up for the wheelchair, because I’m so weak that I can’t get her wheelchair into and out of my car safely, now that I have to climb in and pop the back hatch from the inside and then lift the heavy chair up into the back. (Come On Ellen!) I was also there buying UVP 50 shirts, and more sunscreen for me so that I can cover up my radiation burn and go outside, and a car dash shade because it was like 103 degrees here today and my car said 109 degrees.  Anyway, of course, I’m carrying everything out, instead of using a cart and I had the stuff perfectly balanced when the old lady at the door began yelling at me to come back so that she can check my receipt.  That wasn’t really it either, although that did really irritate me as I was dropping everthing at her feet.  

You guessed it.  It’s the fact that I sat and waited, then sat and waited some more for the radiation treatment today.  It’s the fact that I had to soak and treat this skin 3 times today in between everything else I was doing. It’s the fact that I was lying there on the radiation table after 6 weeks of radiation, a major surgery, 24 weeks of hard chemotherapy, and continued “easy chemo” and as I was looking up at the eye of the radiation, I saw a reflection in the glass. It was my radiated chest with a big scar where the breast once was.  I was just lying there with arms outstretched, up over my head as if in surrender.  Numb. Weak. Tired. No real thoughts. Just waiting.

Benedicto: Quote from Edward Abbey: "May your trails be crooked, winding, lonesome, dangerous, leading to the most amazing view. May your mountains rise into and above the clouds. May your rivers flow without end, meandering through pastoral valleys tinkling with bells, past temples and castles and poets towers into a dark primeval forest where tigers belch and monkeys howl, through miasmal and mysterious swamps and down into a desert of red rock, blue mesas, domes and pinnacles and grottos of endless stone, and down again into a deep vast ancient unknown chasm where bars of sunlight blaze on profiled cliffs, where deer walk across the white sand beaches, where storms come and go as lightning clangs upon the high crags, where something strange and more beautiful and more full of wonder than your deepest dreams waits for you -- beyond that next turning of the canyon walls."

3 left

Countdown: 5 ....done… 4 left

This week I’m back to full dose radiation. I saw the radiation Oncologist on Monday and he put me on new skin regimen.  Domeboro soak 15-20 minutes and Silvadene Cream 3-4 x per day, but not within 2 hours either side of treatment.

The black/purple patch under my arm is pretty gross and even otherworldly. The itching has gotten worse in general. The good news is that the lone bee/wasp that caught up with, only me, as i was freewheeling down a hill on my bike, and stung the he.. out of my ankle, (3rd bee sting since cancer... What are the odds?) has provided me with an alternate severely itchy area to scratch.  That, and my practice of mind over matter seems to be keeping my fingernails off of the radiation burn, for now.

Last week, as I sort of mentioned in my last post, was pretty much a waiting nightmare.  Radiation all week, and my Q3weeks herceptin chemo were all ridiculous waits.  I was also waiting for the exciting thing that I mentioned, to happen. I'm sort of funny about talking too much about cool things that might happen in case they don’t end up happening, but, at least part of it did happen, so i'll tell you. Early last week the magazine, Austin Fit  http://www.austinfitmagazine.com/archive,  that I had sent my story idea/ article (about how 3 Austin running groups had inspired me) contacted me and said they had moved the planned inspirational issue up from August to July and they would like me to be in it!  The person with whom I had been in contact with months ago, Kelsey Menzel, the editorial assistant, emailed me and asked me to call her.  I did, and we set up a photo shoot and interview (yes, with me!) for Friday at 5:00. I was pretty nervous, initially, but relaxed with time, because they were very friendly.  I even enjoyed myself. The evening was very nice and we were out on the trail.  Kelsey interviewed me, and told me that the article that I wrote would be in the magazine! That made me very happy.  I am very curious to see how it all comes out.  As I mentioned, it is the July issue, so it should be out very soon!  The one thing I regret is that I did not take photos! When it comes out, i'll do what i can to make sure you all have access to a copy!