I'm Back!

So embarrassed was I by my last post that I did not even send out an email notification, in hopes that no one would actually read it.  I almost took it off the air, but left it up due to this response from my good friend Cindy R.  “You know I am a proponent of telling the story honestly….(at this point I thought she was going to say...but maybe you should keep that shit to yourself.  But, she went on to say…) You still have your “spunky” voice coming through, and everything is TRUE TODAY. Maybe not Pollyanna, but that would not be realistic at this point.  We all know that you will pick yourself up in due time, so we can handle it.”  I liked this response very much, and I took it as a “go ahead” to allow myself a “mopey” period (period… Hmm. That'll be the only period i have this month).  I use the word mopey due to my recent play of this word in Words for Friends, where I stacked all but one letter on top of another word for a gain of 95 points! Not to mention that it seemed very applicable in this case.  I decided to go ahead and “run” with it, so I went ahead and did some hard core Moping from Monday Morning to Thursday at Noon (today, just now), which is when I had decided the cut off time would be.  I pretty much felt sad and physically heavy the whole time. I didn’t even brush my hair J.  I pretty much just layed there in my bed.  Maybe I played a few words.

I went back to the surgeon this morning and had the thing aspirated again.  I didn’t ask how much he took off, but it was about the same as last time.  It felt immediately better, just as it had the last time. And again, my spirits were immediately lifted.   I told the doc how I have been feeling: lethargic, down, and uncomfortable.  He said it all sounded like a very normal healing process.  He said it takes a while to heal from this surgery.   He also said that, while the area was a bit “tighter” than last time, which is good …a progression of the healing process…tissue contracture….he would likely have to aspirate it one more time.  He said “I wish I could do more to make this go faster, but it just takes time”.  We discussed, briefly, my decision to hold off a bit longer on the radiation due to the fact that the radiation nurse said that radiation would slow the healing of the mastectomy, and that I still cannot raise my arm above 100 degrees. The surgeon was again very nice and said that he did not believe I should be in a huge hurry to do the radiation before everything was ready, due to the fact that all of the pathology reports were so good.  He was very interactive and almost fatherly today.  It was nice. 

The Aspiration, the compassion, my 80 minute trail walk with a good friend and a pooch, the timing out of Mopey Period, and THIS…

 have all cheered me up. 

I will have a great weekend with my family and friends and I hope you all do as well.    

Emily

Stream of Consciousness

Stream of Consciousness?

I like the idea very much, but it doesn’t really even make sense to me.  Seems like it would more appropriately be stream of uncontrolled thought.  Either way.  You got it. The real thing.  No artistic endeavor here.

I’m sitting here now, approximately half way through my bag of polenta chips and having just completed the spinach artichoke dip.  These, I ended up buying as an indirect result of an emergency phone call to my husband for his recommendation on whether I should go ahead and get the fast food French Fries that I wanted so badly to go get, because I am feeling pretty down. 

 I’m feeling down for a few reasons, but mainly because it sucks having ONE “D” Cup breast and a thing on the other side that doesn’t want to let go of it’s old life.  Desperately showing it’s desire to continue life as it were alongside it’s old pal, it continues to drain/swell within the skin that was left from the surgery.  It is uncomfortable, and in my opinion ugly and lopsided. It is also becoming a logistical nightmare for me to get dressed.  While I do have my rubber boob, which I must say looks very realistic, it is often too heavy for certain outfits and has recently fallen out the bottom of a sundress I had on.  Plus, right now, when I wear it, it is actually too large (not to mention uncomfortable) because of the swelling that is already there.  

Secondly, I’m beginning to seriously regret not going ahead with the left mastectomy, at the same time as the right, like I wanted to do initially. Yeh, remember the surgeon talked me out of it because it did not make sense to do 2 surgeries on the left breast... That it would be best to just do the left mastectomy at the time of the bilateral reconstruction.  Well, that was 4 weeks ago, when I was pretty sure I wanted to do reconstruction.  Now, I’m not so sure I want that, but, I do want to be LEVEL… EVEN….NOT LOPSIDED.  I’m here to tell you now, unfettered, unedited, that it is not comfortable and I am NOT OK with it the way it is.

Thirdly, I’ve noted that I’m extremely uncomfortable being behind what I consider the normal curve of healing for this surgery.  Not to mention just being uncomfortable.  This fluid filled thing hurts. It forms a pretty large pocket close to my underarm that is begins to compress a nerve.  Last week, on Thursday, I did end up going back to the surgeon to get the fluid aspirated with a needle.  However, this, outside of some cuteness I witnessed with my children this weekend, was probably the funniest thing that happened this week.  That and my friend Peter’s description of NOT CUTE, middle aged trail runners. (Me). Just prior to having the thing aspirated, the surgeon was wiping the area down with the alcohol wipe and I was grimacing while talking telling him that, “I can feel that, and it feels very gross”.  He was talking at the same time he was actually inserting the large needle and saying that “this will not be painful because I will not be able to feel it.”  Well, it was funny to me, because the needle was actually already in there and I hadn’t felt it.  He took off 85 CC and it felt good.  It also flattened the thing out and lifted my spirits quite a bit for 2 whole days.  Then the thing filled back up, and here I am eating polenta chips.

Here is a link to a photo of the mastectomy if you are not faint of heart. Please do not click on this if you have any issues...of any sort.

http://powerhowellphotos.shutterfly.com/


Now, erase that from your memory.

This week I did my best to take it down several notches (activity and exercise)  to see if I could get this swelling to subside. 

 Here I am pictured drinking my latte and riding that recumbent bike at the gym.

I will admit that I have had the desire to take my coffee drink out on my bike before, but I never did it because I usually needed the room/both cages for hydration fluids.  I also figured that I could not really consider it a workout if I was drinking coffee at the same time I was riding bikes.  I was right.  Not just because I was drinking the Latte’ though, but also because I was on the recumbent bike.  I used to look at other people at the gym who were on those bikes and think, “I don’t think they are really getting a work out”.  Now I know they were not.  Yes, I am dissing the recumbent bike, but only because I’m angry. (Remember, the one boob problem).  It does serve a purpose, though, which is to let my arm relax, while my legs are moving.  And, I am glad I have it as an option, however lame and boring that it is.  I did get to watch a pretty good movie on the Netflix on my iphone while riding it the other day, too. The movie was One Week.  Interestingly, it was about a guy who just found out he had a very aggressive form of cancer. It was a pretty good movie.  I won’t tell you the end, but I’m pretty sure it was made in Canada.

And then there’s THIS: look closely.

A co-worker of mine, who used to be 100 lbs larger, once told me that this was called the “Fat Man’s Knot”.  Despite being a therapist (just PT though, not OT), I’d never thought about that.  People with larger abdomen’s have difficulty bending down to tie their shoe laces.  So, what they do is lift their foot to cross their leg to rest it on the opposite side knee to tie the shoe.  When doing this, the knot ends up being on the medial side of the shoe instead of straight on the top.  This is a photo of my shoes, taken on my most recent trail walk.

Hmm. These chips remind me of Bugels.

Heartbreaking Power

Chorus from song Heartbreaking Power by Richie Howell

Heartbreaking Power, powers through, takes all my energy to fend off what you do to me.

Is this coincidental?

This week I’ve been inspired by another blogger that I “met” online, by coincidence. (I’ve never met someone online before.)  On Tuesday after I put up my last post, I was looking at my blog stats, to see if they were back up and running, because they had been not counting for a while. Parts of the stats were working and parts not, but one of the stats shows where the searches have come from.  One of the searches to my blog came from an online Magazine of sorts called http://www.righthealth.com/ .  It sounded intersting, so I went to that site, and the topic was breast cancer.  Under the section, Blogs and Advice there was a link to my blog with a short excerpt from it regarding the nerve pain I’d been having since the mastectomy.  This was pretty exciting to me!  Below the link to my blog was a link to another blog called Some Girls Prefercarnations, http://carnations.blogspot.com/ 

(I am not suggesting you defect!) also with a quote about nerve pain after mastectomy.  I went to that site and did quite a bit of reading.   I became a follower and put up a comment to her latest post.  I was very excited when Heather, the author, replied to my post with a post on my blog.  Anyway, I enjoyed reading her blog. It was very informative, and applicable to my situation. Heather who is a scientist by trade, is a bit more on the technical side than me.  That, along with the fact that she has had 33,000 more views to her blog, gave me some food for thought. Hmm. Maybe folks don’t like all the fluff.   Possibly, the mental/emotional crap between the tests and appointments is not informative or helpful to others?  Nah.  While Heather has a different form of breast cancer (Hers is inflammatory …not sure the stage but I’m guessing Stage III, and mine is ductal Stage IIIA) we’ve had a similar course of treatment.  She had Chemo first (Neo-Adjuvently) and her Left Mastectomy with Lymph node dissection was Monday March 7^th. Mine was Monday March 21^st.  She’s recently begun the Triple Herceptin, as well.  I began mine this past Tuesday.  It is pretty interesting having something to read by someone who is on a very similar program, only weeks ahead.   It has been nice to hear that I am not experiencing pains that are very unusual.  I am bummed, however, that she got her drains out in 15 days, and mine took 21 and really could have stayed in longer.   Mine had not been taken out at week 2 because the doctor wanted the drainage to measure less than 20 cc in 24 hours. 

On a side note, this is the outfit i had on when my friends at "the other" coffee shop asked me if i was headed out to the Texas Relays.  I'm pretty sure they were asking me, like i was going to race.  It made more sense though when one of the girls said she thought it was "like potato sack races, or something".

http://www.texassports.com/sports/tex-relays/tex-tex-relays-body.html

The surgeon went ahead and took out the drain today, despite the fact that the drainage was still ranging from 45 to 50. Yea!? Catch 22.  I may have to return in a week to have any build up removed with a needle.  I am unfortunately beginning to think it is my fault that the drainage did not decrease like it was supposed to.  I figure I’m likely overdoing it with exercise, and in general.  The exercise addict in me does not want to admit that though.  I did wait 5 whole days after surgery before even walking. But, it’s true that by day 7, I walked 60 minutes on the trail, and have been walking an average of 70 minutes 5 days a week, since. (Hey, the surgeon said I could walk or ride a stationary bike!)    I do try to hold my arm still.   

 I’m also trying not to lift my kids or anything heavy, as instructed, not stretch my arm, and I am trying to mostly rest the rest of the day, as able.    I also think it is possible, due to the plateau in the output, that it could have been the drain itself causing some irritation, especially considering the fact that I have difficulty being still.  Now that the drain is out, I plan to lie as low as possible for the next 2 days.  I do get to take a shower tomorrow which should be great!  And, the doctor said I could begin to stretch my arm in about 1-2 weeks in order to regain the full range of motion.  I am currently able to lift it only to about 90 degrees.  

Here's a You Tube link to the song performed by Downtube Shifter(great picture quality, not great audio, except keyboard :)) if you'd like an idea of the tune.  I suggest now clicking link then  back to the blog to read while listening.  http://www.youtube.com/watch?v=GB1psCH2W1w

Prior to this morning, my spirits have been heavy much of the time this week. I’ve even had moments where I felt like my heart was actually breaking.   There have, of course, been ups and downs (as seems to be my Modus Operandi). 

 Due to the fact that I’ve been thinking a lot lately about how I am about ½ way through this……here we go again….stick with experience….., I’ve even begun to question if at any point I will actually truly give in to the method.  Give in enough that I will no longer feel the heartbreak? Not the physical heartbreak caused by the Herceptin, which is technically killing my heart and decreasing its potential for output (or ejection fraction), i'm talking about the heartbreak of giving in to the method, allowing patience, and more recently of severely missing my coping mechanisms which are embedded in exercise.  Running in particular.  Every morning I step outside and my first thought is still the current temperature and how it would feel to run today.  As I drive or walk around town, or on the trail, I still have vivid memories of runs I’ve had in the past.  For the first seven months, all of these thoughts gave me hope and were reminders of reasons to keep up the battle. Now, these thoughts are beginning to elicit these feelings of heartbreak.

This week while attempting to power through the heartbreak, I’ve been trying to remember that it is this awful method that is saving my life. .

 Remember earlier posts such as MRI results – No Cancer.  Pathology results - Clean.  These are wonderful things! I am truly grateful.  I have to admit, however, that these facts, along with comments from male friends of mine that believed it was now no longer necessary to return for more cancer treatment, have made the next 7 months (the 6.5 weeks of radiation, the 9 more months of  chemo and another hard core surgery) seem a bit more difficult to accept.   Overkill is one thought that comes to mind.  These facts have also, however, given me back a bit of control, as I noted when I went to see the oncologist and receive my first dose of triple Herceptin.  As I was sitting in the waiting room for infusion, a nurse came up to me, sat down and said…..”There’s been a small hitch in your treatment today…..Your MUGA or Echo (test for cardiac function) is overdue.  You must have one done every 3 months, and it has been 3.5 months since yours was done.  We can do the chemo today, but the doctor has to sign off on it”.  With that, I pulled out my new “I DO NOT HAVE CANCER CARD” that i didn't really even realize that I had until that moment, and said….Whatever you need to do, in order to not allow this wait fest to go on like it did the last 2 times I was here, is what you need to do.  If you need to go into the doctor and bust the door down right now to get him to sign off, then that is what you need to do.  I will not wait here for much longer.  I will leave.  ….And you tell him “I don’t have cancer anymore”. The nurse went away, and she came back in a few minutes and said “that worked”... 

Don’t get me wrong.  I’m signed up. I’ve paid the fees.  I’ve done the base miles. I intend to complete this event.  But, it did give me a strange kick to say it out loud.  Risky, but liberating.  

Truth Is....

I lied.  Prior to my surgery, when one of the very nice people that I work with said to me (meaning the very best, mind you) that, at least now I can have the boobs that I always wanted, I said…”I already have the boobs I always wanted”.  I should apologize, because, firstly, I know she meant well, and it brought her down when I said it, and secondly, as I mentioned, it was a lie.

The truth is, I (now had) had the boobs that many other people wanted.  Don’t get me wrong, they had their “perks” (back in the day anyway), and I do have a lot of really nice Mardi Gras beads.  But, almost on the freaky end of ironically, I never really wanted this gift.   It’s almost even creepy that the first time I remember praying to God, all on my own, it went something like this….”Hello God….Please do not let these things grow any larger.”  I was probably around 10 years old, and at the time, one of only 2 girls in the 5^th grade who needed a bra.  While this is ironic and creepy on so many levels, it is also pretty funny.  My prayer to God may sound familiar to some of you.  Probably because I stole it from Judy Blume, the Author of  “Are you there God?  It’s Me Margaret”.  This is a book that many young girls were reading at around the same time that I was. 

Here is a short exerpt from the book.

“Are you there God? It's me, Margaret. I just told my mother I want a bra. Please help me grow God. You know where. I want to be like everyone else.”

Here is a clip from a late night show of an actor reading from the book to give you a bit more of an idea if you are not familiar.

www.hulu.com/watch84141/late-night-with-jimmy-fallon-will-arnett-reads-judy-blume

Outside of the fact that I stole the prayer, and changed the words, I also found it funny that when I was googling the book in order to remember the exact title, I read a book review that actually said…

”Are You There God? It's Me, Margaret by Judy Blume may just be one of my all-time favorite novels.” Really? Novel? I’m not dissing you Judy!  I’m talking about it now aren’t I? Anyway, I also I found out that it is on a banned books list with Novels such as, To Kill a Mockingbird and The Adventures of Huckleberry Finn.  It was banned for its sexual content by religious right.  Uh…why is this funny? Because I was reading this during my Methodist (Or Baptist Lite) Phase, and I thought it was a religious book.   Seriously, years later I was a bit embarrassed that I had read a religious children's book, and liked it.  And, to the BOOK BANNERS, it got me to pray didn’t it?   I suppose it did backfire though, because, if i had to mark it, i'd say it was likely the beginning of my Skepticism.  I know! Some of the most trusting, may be thinking that god is listening now. 

God or no god, I suppose sometimes we all are the butt of life’s little jokes.        

On a side note, the other book that I recall reading during this time period was “A Wrinkle in Time” by Madeleine L’Engle.  I was pretty sure this was not a religious book, because my Dad (who was a science and nature guy) also read it, and he thought it was really cool.  It was about time travel through a “Tesseract” or, a Wrinkle in Time and Space. The children in the book had to travel through this Wrinkle to the 5^th dimension, in order to find their father who had been missing for over a year.  My father came to my new house to help fix it up, back in 1999, and I never saw him again.  Who knows.

With all that said, lets get on to the update.  I was attempting to describe to a blogger friend of mine, who is significanltly better with words than I, how I’ve been feeling this week..  “kind of like, in my own bubble, kind of down…”, I said.  ”Isolated” she said.  Yes, I suppose that’s the word that pretty much describes it.  Isolated is not all bad.  I don’t really feel alone, and I am not alone.  I’ve been with friends or family, pretty much all week due to the continued outpour of kindness and generosity.

Cindy R and Me at my new trail entrance

Cindy Above, and Me at the bottom of Hill of Life :)

Generous Meatloaf!



My Loves Humoring me on Trail Hike Bastrop



Outside of this moment:



Movie Theatre All To MYSELF!



Even at this point I was really very happy.  Being in a movie theatre all alone can make you feel like the richest person in the world, and my WWF friends were with me!  

 And this moment:

Photo of Mount Bonnell…here texting my sweet running friend Lisa reminding her that the last time I was here she was kicking my ass up the hill on the back side of this Mt. Bonnell.

And this moment:

Just Kidding:

Just an afternoon at the grocery store :)

On a more serious note, I suppose I was feeling a bit isolated, when I realized that my surgery was exactly 7 months from the weekend that I found the tumor.  So bizarre when it hit me while I was lying in bed, that that breast once hurt from cancer.  I remember exactly what it felt like, and now, it’s just gone. It hurts again, but now from the surgery. The pain is decreasing somewhat, but it is still there, and now my whole chest, back and shoulder are getting tight.  The surgeon told me that that will get worse.  (Did I ever say I appreciated directness?- I don’t think so).  I am frustrated that the surgical drain has not been taken out yet, due to too much drainage, and will not be taken out until later this week, or even Monday of next week.  This is mostly a problem because i cannot take a shower while it is in, and it makes it difficult to get dressed and sleep.  The surgeon states that he wants to be cautious, because it will heal best if we do not rush taking out the drain…..Me'….thud!…Breathe….I’ve been unusually tired, I think due to the healing process, the PAIN, SPASM, (AXIETY), PAIN cycle, and the pain meds.  I’ve been attempting to rest at least daily, and I have been eating more cake than I should, because my Mom said I needed it to get better :).

Tomorrow I go back to see the Oncologist and get my first triple dose of the Herceptin. Yes, back to that godawful place for more chemo. (Wasn’t that phase over?).  I’m sure at some point soon we will discuss the initiation of the 6.5 weeks of radiation.  I’m thinking it will begin within the next few weeks.

PS? Is it wrong to steel photos of your own children off of the internet? 

I say no way, not when they're this cute!!!