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.

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

William Arthur Ward

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."

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To Ellen:

Ellen,
 

This is the letter that I wrote and wanted to send to you when I thought I had 1500 words to use. The one I sent with 1489 ish characters was edited from this letter.
I originally posted this on Friday, May 13, but i'm going to keep posting it at the top, until you get a chance to read it.

Dear Ellen,

Cindy Left, Me Right

I’m writing this because my very good friend Cindy, who has been the “team captain” of the support team of my friends for many years, really wants me to (and because it would surprise the hell out of her if she found out that I did).  Cindy has tried a few times to submit my name and my story to you and your show, because she wants to see me get a new handicapped accessible van, in order to simplify my life. 

I do think it would help, and it would be fun to meet you, so, here I go:

I was born in Bemidji, Minnesota in 1970, which is apparently the reason that I was later struck with Multiple Sclerosis in 1993 at the age of 23.  Or, so it is the only reason I’ve found.  For some reason, more women from the north half of this continent gets M.S.  But that’s not the story.  The M.S. freaked me out at first and I got really lazy and fat and was afraid to exercise, but then I got really tired of that and decided to mentally beat that disease and physically take my body back.  Well, it either partly worked, or I just got “lucky” and acquired the less debilitating kind of MS.   I went on with my life, completed Physical Therapy school, spent 4 years in a rock-n-roll band as a drummer, and then traveled Southeast Asia and Mexico.  At some point, I decided to settle down, got married, and began to really focus on the exercise again. It was the M.S. 150 bike ride from Houston to Austin that really got me addicted.  After two years of completing that ride, and the completion of my first ½ marathon, my husband and I got pregnant.  Here’s where the story begins in my eyes.

In October 2003, my beautiful baby girl, Adaline, was born.  Well…. extracted, in a hurry.  It was an emergency C-Section, and she was immediately rushed off to the NICU with Grand Mal Seizure requiring intubation.  After blood tests, CT scans and EEGs we were told that she had lost ¾ of her hemoglobin during what they called a Fetal to Maternal bleed. This caused her Moderate/Severe Brain damage and her seizures.  She would likely not walk or talk. Despite her angelic looks, her innate beauty and her captivating smile, the first three or so years of her life were pretty much Hell for the three of us.  Yes, my husband Richie and I did somehow manage to stay together despite all odds (Most folks with disabled children divorce, and Richie’s mother- in- law believing in her heart that he wasn’t the one).  During the first 3 years, myself and my husband both pretty much entrenched ourselves in exercise, I believe to fight off, or to ignore the sadness.  He began racing bicycles, and really wanted to win a race for Adaline, for some reason (which he did J).  I went on to run marathons, including the Boston Marathon.  Somehow though, the desire to have another child, despite the ridiculous, and ultimately frightening nature of that idea, kept creeping in.  At some point, after 4 years, my husband gave in and we had our beautiful baby boy Ace.  It was not an emergency, and it was “how it was supposed to be”.  I bounced right back after that pregnancy and C-Section.  I began running again and then found trail running.  I was a natural, and I loved it, and things both on the trail, and at home were going very well.  It was a great 2 years!

One week after my last trail race (in which I placed 6^th female J), I found a lump in my right breast.  Of course I assumed it was hormonal, because I’d had a “history” of being  “hormonal”.  Within 3 days it began to hurt, and within 1 week I found myself with my breasts in a clamp. (Mammogram).  Approximately 20 minutes after the mammogram, the Radiologist was sitting next to me saying something I could not hear.  I asked her to repeat what she had just said,  and then she said….”you have Cancer”.  That was August 27^th 2011.  So, since then, I’ve been busy with full time work, a 2-3 year old, a 7 year old in a wheelchair, Biopsy, Chemotherapy, Surgery , right mastectomy, and now radiation.  The left mastectomy and reconstruction are planned after radiation.   Yes, I am still trying to exercise.

Since Cancer, my 1999 Toyota Sienna, which is a great car, has proceeded to break at all of the handles.  For example, in order to get the 3 year old into his seat, I have to crawl to the back seat from the front seat, with him to strap him in because the side door no longer opens.  In order to get the wheelchair into the back, I have to crawl into the back to pop the hatch from the inside out to open it.  The repair is going to cost $600 and I’m just stuck. Because I don’t think the car is worth that, I won’t take it in.  Not to mention, it is disgustingly dirty, as it hasn’t been cleaned in over a year.

So, here’s where my friend Cindy thought that you, Ellen, could come in. 

Sincerely,

Emily "Powerhouse" Howell


P.S. Recently, my work called and told me that the therapy clinic I work(ed) in is being closed.  My job will no longer exist when I am released back to work.

I do also have a blog (which now it seems that all breast cancer survivors have) if you are interested in more details, or just plain “oh look, there’s a car wreck” entertainment. J

Ballotable Records    Of Cancer and Trail Dreams

www.BallotableRecords.blogspot.com

And Me Without my Computer, Another iPhone Blog

This is not about how I love my iPhone so much that I literally sleep with it under my pillow due to the comfort that it gives me to have it nearby.  Anytime I wake, I have the option of taking notes on any interesting thoughts I may think I have, I can play my words, or I can stream and watch a netflick movie at any time. This streaming, however is getting near intolerable due to the Severe increase in stops.....pause....pause.......to the stream.....during…. the movie.  To Netflix: I did love you, and I've found no other. However, your days of having me as a cheap late night date are almost over.  Seriously, it's YOU, not me.

It’s funny to me that I actually have a theory as to why this Netflix slowdown has occurred.  This is how i came up with my theory: I recently saw at Re-Tweet (yes, I’m on Twitter now, and know what a Re-Tweet is. You can catch my one tweet at…you guessed it….BallotableTWTs) that the CEO of Netflix stated “It took us four years to get to 3.3 million subscribers. Now we did it in one quarter.”  I’m thinking they need to upgrade their servers.  Did I just say that?  I don’t even know what that means.  This radiation has gotten to my head.  

This post is about how I've written several of my blog entries, including this one, directly on my iPhone using the notes app, which has surprisingly good word processing.  Some, I've even messaged to the blog from the phone.   The Surgery post for example I wrote and posted from the phone merely hours after my surgery. I didn't take my laptop to the hospital because the hospital instructions said not to.  Don't get me wrong. I  Love my Dell Inspiron Laptop.  I love the keyboard and that nice big screen.  It's fast and easy to use. I particularly love how it supports ePhone (my iPhone’s name) beautifully.  Like, for example, the BLACK Monday that ePhone tapped me on the shoulder and told me that she was going to go ahead and go back to factory settings and let go of everything I’d ever given her.  I went into full panic mode, drove like a bat out of hell to far south Austin to a computer savvy friend’s house (Chuck) that simply and calmly ran the latest backup back to the phone. It was like a majical ballet the way they synced back up.  Syncing….12 minutes….do not disconnect…patience…syncing…do not disconnect…9 minutes…so on until the finale…OK to disconnect! Turned ePhone back on, and she was all back to normal, like a bad dream being over. When I first got the laptop I was a bit afraid that the two worlds (IBM and Mac) wouldn't be able to mix.  That they literally wouldn't sync.  I had no idea how good it could be. I believe this to be proof that in this day and age, with a little love and trust, even the most unexpected of relationships can work.

Just when things started to go fairly smoothly with the radiation, you know,…. short wait, day in, day out A-2, A-3, then holiday and all...Suddenly…. Bam!  I'm back to the WAITING.  Monday, and now today (Tuesday). At least Monday the receptionist had the guts to honestly tell me an approximate wait time.  I took that Bull (s…) by the horns and ran with it over to the GAP and bought some shorts.  Then, over to Central Market to pick up some dinner.  There was no China shop involved.  And, even with the “reported” fiasco at radiation station earlier that day (causing the delay), the radiation oncologist had still figured his numbers in time for my "boost” treatment that was planned to begin that day.  I think I've finally figured out the confusing terminology.  Bolus = when they put the rubber pad on the chest to bring the radiation closer to the skin. Boost = when they narrow the treatment area to just around the scar to give the other areas a break, and I think they up the dose in that area too with the boost.  Just a day or two after my last post in which the doc had said we will continue without the boost if we can, my skin began to look much worse, and bubble, and the tech "called it" and said she would try to get the doc to have the boost setup ready for Monday.   Hmm.  Now that I'm thinking about it, maybe he was cramming to get his numbers in in time for my appointment, and that's why they let me go to the store!  

Anyway, now Tuesday, as I sit here in the Chemo chair after 1.5 hours of waiting and still not even a poke, I'm thinking once again how glad I am that i have my little pocket helper, friend, confidant (iPhone, if you haven’t been paying attention).

Oh, there's the nurse.  I like that one.  She doesn't hate me.  I think I'm a pretty nice person, and some people like me, but I'm not real popular amongst the Chemo nurses in general.  No telling why.

Good news! White Cell counts normal!! 

Red Cell Counts continue to decline: not great news, but not surprising due to continued feelings of increased fatigue since the start of radiation.  And, actually in some ways makes me feel a bit more confident in my mental stability.  Feeling this week, sometimes I have trouble being confident that it’s not just in my head.

OK. Now off to Radiation.

What do you know, another hour and 10 minute wait here.  I must bring my computer tomorrow.  My eyes are beginning to cross.  

Last day of radiation is June 20^th. Haven't heard from Ellen yet, so i think i'll let her letter slide down the list, until i do, but i did have some other fun news  that i'll tell you about LATER!

Radiation #20 out of 33: Segway

Me in the waiting room at Radiation

I need to correct something I said on my last post about the “Bolus” treatment.  It’s still a bit unclear, and I should probably be more diligent about clarification, but part of me likes my recent method of ignoring this portion of the treatment.  Anyway, apparently, what I was doing before this current phase of the radiation WAS the bolus.  They were putting a ¾ inch rubber pad on my chest over the radiated area for about ½ of the zaps.  I believe it was that rubber that made me feel the weird menthol cigarette feeling in my lungs and throat because I’m not feeling it now. The Radiation oncologist mentioned that the rubber pad brought the treatment closer to the skin because it added thickness.  So, now, they’ve removed the pad and they are doing a very similar treatment without the pad.  (You know, I lay down on the bench in my mold, they line me up with the tatts then the giant “C” arm moves around and zaps me from different angles.  First zap 17 seconds, etc. ) Apparently without the safety of the rubber pad, it is a bit MORE intense. So, what they were doing the day of my last post was setting me up for the narrowed treatment around the scar which will begin basically once the skin everywhere else can no longer handle the radiation, and it needs a break.  So, they’ve calculated the tangents and set up a different machine to complete this narrowed treatment, but it will happen only when, or if, the rest of the skin can no longer handle this intense treatment.  The radiation tech said that the best case scenario is that they can complete this intense treatment throughout the remainder of the treatments and not have to do the narrowed treatment/not have to give the rest of the skin a break.  It often gets very confusing for me because they will say the skin looks very “good”.  Sometimes they mean it is nice and red/burnt like they like it, and sometimes they mean that it looks good/it looks healthy…it can handle more.  Maybe tomorrow I will ask what will happen at the end if the skin never gets as red as they want.  I remember reading my online friend Heather’s blog that said they made her do extra treatments at the end.  I hope this is not the plan for me.  If so, maybe I need to be less diligent about my skin care.

Overall I’m still having some good days and then some days of severe fatigue. My blood counts have gone down since the last 3 week Herceptin chemo due to the radiation.   I’m stretching my arm diligently, and I’m seeing some improvement, however it is still very tight. Now there is some pain in the area of the radiation deep and superficially.  I did enjoy my short Cancer Holiday. It gave me a small window into the not so distant future of what it might be like to have a life without cancer or cancer treatment.  

Here I am in the shade laying out by our pool.

Here i am sporting my radiation tan, and...can you tell which one is real? Guys can't.

I tagged along with Richie to the Mall one day, and, as I was making fun of the Mall Cop on her Segway, (picturing myself taking a random item off of a shelf right in front of her, and walking very slowly away as the cop was chasing me…. me encouraging her to “maybe lean into it a bit”, etc….) it got me thinking about Segues in general, and how Segue between events seems to be quite important to me.  *YOU KNOW I WISH I HAD a PHOTO of ME on a SEGWAY!!!   I thought my “Words With Friends” rally was a genius segue between Chemo and Surgery. (Still playing, by the way. Powerhowell) Now, I’m thinking, a 50 mile trail run between radiation and the next surgery/reconstruction.   

But, what about a segue between writing a blog about cancer into writing about something else? Will I continue to blog or write?  About what?   Trail running?  Maybe.  Hmm….. “Homely” (“Trail Runner”) cancer survivor jogs really slowly for a really long time, over dirt and rocks.  Enjoys every step.   I kinda like it.

Oh yea, Ellen has not contacted me yet.  I thougt it was very cool , however, that in a recent email from my cousin (who just graduated from Medical School-Congratulations again Brayden!) he asked me if i knew about when I would hear back from Ellen.  I'm thinking maybe by the end of next week. :).   It probably wouldn't hurt though, if a few more of  you reminded her by posting a link to this blog on her The Ellen Degeneres SHOW facebook PAGE.  It's the one with over 5 million "likes".   I'll let you know if i hear anything!