NYC Here I Come!

I feel so out of touch! My computer has been broken down and I'm just not comfortable with that!  I was finally able to sit down and get it fixed today over the phone by a very helpful Indian guy named Jaz.  Yay! I'm so Jazzed.

It's so hard to believe that it has been almost a month since I have posted an update.   Since my last post I have indeed made some, great and exciting, and other, slightly upsetting, GAINS.   Most importantly, each and every one of my "Ouwees" have healed up completely.  It really was almost like a miracle how both of the small lingering open areas literally "slammed shut" as we drove to the coast for our 4th of July vacation.  This made me SO happy because that meant that I could swim in the water without a greater fear than the next gal of the uncommon "flesh eating bacteria" that has been found rarely in the waters there in Matagorda bay.  It was so fun to be immersed in water and to swim again. I really missed that over the 12 weeks prior. It was also very fun and exciting to be back in a bathing suite and to be balanced again without the fuss and muss of my Spongeboob.

   We all had a great time.

Not an effect of Bacteria. They are so cute like this.

Secondly, I have been able to start running again!  It has been slow and quite horrible, but that's ok.  It still feels good to be at it again.  I'm now up to 6 miles as my long run. I've been able to do some distance biking as well, which I feel will eventually pay off for my running endurance once my muscles and joints are able to tolerate running again.  It has been interesting that my leg muscles and joints are actually feeling each additional mile like they once did years ago when I first began training for my first half marathon.  At approximately 12 weeks, this has been by far the longest break I've taken from running in at least 8 years, maybe even longer.  Even through chemo, radiation, and the first mastectomy,  I was not off from running for more than 3 weeks (radiation surprisingly enough).  Thinking this out does help put my discomfort into more perspective.  Outside of the mild joint and muscle issues, there is the more significant discomfort of the severely TIGHT abdomen.

It is so much better that it was, but still very difficult to stand up completely erect, and even more difficult to hold that erect posture, that is recommended for running, while running. Please do not get me wrong, I am actually not complaining.  I am truly thrilled that the wounds are healed and that I am able to start stretching and running and living life again!

The final, slightly upsetting gain that I have made since my last post is the 4 lbs that, did, literally, "sneak up from behind" after my vacation! I want to mention this because it is an interesting phenomenon or side effect of the DIEP procedure.  You might be asking "what's so interesting about 4 lbs of deep fried back fat?" Well I'll tell ya....
About 1 year ago I was warned by another breast cancer and DIEP flap reconstruction survivor that this could happen. (You can see the sides of it if you look closely above)...Anyway, because the plastic surgeon literally cut off all of the fat from the front side of my body (abs), when I gain weight it will no longer go THERE.  After 42 years of using my abdominal rolls as an indicator of weight gain I am going to have to rely on another method.  I've been feeling so 'thin' lately that I have not stepped on the scale in WEEKS.  The other day,  I accidentally got a view of my back side in the mirror, and just as the woman that I mentioned earlier had described to me a year ago,  I FOUND my 4 extra pounds!
It was shocking, but at the same time I got a laugh out of it because I remember this woman, and her words of warning, so clearly. 

15.5 Weeks until the NYC Marathon!  I'm cutting it close, but I can do it!  I know I can because  thanks to you all, my awesome friends and family members, and Fred's Team, my fundraising goal has been achieved (One donation not showing on the page yet). I wasn't sure how I was going to raise that money, but it happened, and this training is going to happen the same way! 

PS if you have a person you would like highlighted in this blog, please send me their information/write up if you have not done so already.  Thank You!

Emily

Cuts and Scrapes

I mentioned sort of as an aside in my last post about how I took Adaline to the 6 year old Pony Party and that I felt that it was actually a breakthrough for me that the biggest issue I had with the situation was that I had to recognize my inadequacies as a parent.  Realize please that this is in contrast to the anxieties that I was having prior to the party about potentially having unsettling thoughts about Adaline’s disabilities, or how I’m probably the only mom there with one breast.

The past 3 weeks have been difficult in some ways, and that breakthrough got me thinking about why.  It’s because, I’m not only getting back to the great things in life like having more energy, running again, and being able to do fun stuff with friends and family, 

I’m also getting back to everyday life and everyday problems that people just have:  Insecurities about parenting, scheduling errors, work issues, minor injuries, or communication exigencies in marriage.   I realize now that I am simply out of practice with many of these everyday things.  It’s sort of like for the past year the “daily grind” has been on hold in order for me to focus on Cancer Treatment.   In some ways, dealing with a life threatening situation is simpler.  It is more black and white, and in many cases you have no choice, or have little control over your course.   The complexities of relationships and daily life seem to happen around you. 

While a life threatening cut may be more emergent (as in the case of sharkboy…another story), it’s very possible that it not be more painful or even difficult to deal with than a superficial scrape.  With a deep cut, it is clear what to do.  Call the ambulance, go to the hospital, get stitched up and stay off of the thing until it heals. No guilt, no doubt, no remorse.  With a scrape, it is often more complex.   You get up (from your fall) wash it off and go on with your day.  You may wonder all day if the thing is getting infected, or if you should do more about it, but you can still go on with your daily routine, for the most part, until you try that one thing, like kneeling, for example, that causes severe pain or irritation.  You may even have guilt associated with complaining about the pain of such a minor situation.  With a scrape you’ve received no assistance, and likely little family support or sympathy. You’ve doctored the thing on your own the best you know how, yet you may have trouble sleeping at night due to pain from the covers.  The person dealing with a severe cut is likely sleeping like a baby with prescription pain medicine.

Now that I am becoming more aware of my re-entry into active participation in life and it’s everyday intricacies, I am going to try to be more aware of my surroundings and how people and actions are interrelated.   I’m going to try to pace myself, stay focused, and re-learn to lift my feet.

On the physical recovery end of things, I do, at times, not feel totally sloggish while running.  I now have brief interludes, very brief, of feeling O.K. during a run. My Red Blood Count is still Low, and my pecs, lats and triceps are still very tight,. My pecs are forming some sort of myofascial knot just above the axilla that i sometimes confuse for the port, which is on the other side.  The radiation burn has long since healed, but still looks like a deep tan. My hair continues to grow.  My left knee hurts like a burn from this scrape from falling during a "road" run, of all things :).

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.

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!

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!