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.  

SPAspital

SPAspital

My last post that was around 10:00 pm on Monday, the night of my surgery, made it sound like things were all going very well.  Well, at that point they WERE. It pretty much went downhill from there.  Richie left and I was happily going to settle in for the night.  Then the unexpected happened.  I could NOT sleep.  How could I be on Morphine and not be able to sleep?  Anxiety, I suppose, is a powerful thing but, I kept trying.  I kept pushing that button, and kept falling asleep for about 10 minutes. It was rough. I was pretty much up all night.  Without going into too much detail, I was not satisfied with the nursing care, and I’ve already begun to seek alternatives for my next surgery.  Someone asked me if I was having trouble sleeping because the nursing staff was keeping me awake, and I remember saying, no, if anything, it was me bothering them.  It was around 3:00 a.m. when I first mentioned to the Nurse Assistant that I had a severe headache, and that I found that odd, for someone on Morphine, and then after 4:00 by the time the nurse that was helping out my nurse came in to discuss this headache.  I finally began to blame the morphine itself for the headache and asked that nurse if there was anything else I could take instead, and she said yes, I could take the hydrocodone and just use the PCA (Morphine pump) as needed. I asked her what the usual plan/process for the weaning off of the morphine pump was, and she said “I don’t know”. Then, I began to wonder if should have been on the oral pills all along too instead of relying on the self-administration of the morphine, which I was actually trying to hold off on.  Just think how much pain I could have been in when I woke up, if I had actually fallen to sleep.  So, somewhere around 5:00 am I started the Hydrocodone and stopped the morphine.  The headache did not stop, however, until after my Mom arrived around 10:15 with my free iced latte’, and taco, and some Advil.  Free? You ask? Yes, Free! An amazing thing happened when my mom went to see my caffeine dealer at the Irie Bean coffee shop http://www.iriebean.com/  , (Raf,  sounds like Calf…his brother’s name is Ace J)  When my mom began to order my specialty drink,  Double Iced latte’, 2% milk, extra ice, less milk, Raf said, “Is this for the (bald) girl with the little boy who comes in here?  She likes it in the paper cup….”and he put it on the house!! It was awesome because I do like it in the paper cup, but I thought that was probably just one too many things for Mom to remember.   Then, Mom went to the Casita Taco next door and my sweet taco lady also guessed who it was for, and put it on the house for me as well!  Hand on chest…..Verklempt J.

At 8:00 a.m. my surgeon came in and told me the surgery went well, and that they visibly saw no cancer.  He gave me some instruction on how to care for the incision and told me that I would go home today, and to make a follow up appointment with him next week.  I was pretty out of it, so I don’t remember everything he said.  At 9:15, the next nurse came in and I asked about what time I’d go home and she said by 11:00.  I was shocked and believe I said “OH SH….I…T”.. ..I was not near being ready to get going out of there.  Then the nurse said, “Well, we will not kick you out. You can leave when you are feeling ready.”  So, when my mom arrived, I instructed her to lay low, and just stay in the room. I would not call the nurse, and we’d likely not see them until 2:00, which was about accurate.  The nurse tech did come in to take the BP, and then finally I did feel I needed to call someone to empty the drain. Should I even go into what happened next?  No, but it turns out that a liquid and gas filled rubber pocket does have a tendency to splatter when you release the little stopper. Next time I’ll close my eyes.

Since I’ve been home, I’ve been a bit more emotional than usual.  I’ve been in more pain than I expected.  The doctor had told me that this surgery was “not that painful, but takes longer to recover from than you’d expect”. (Maybe because it IS PAINFUL to the person who has had the surgery).  I was in quite a bit of pain when the surgeon himself called me on Thursday to give me the pathology report results.  The great news was that they found NO CANCER in any of the breast tissue or any of the lymph nodes.  Unfortunately, I was so busy complaining about the hospital, and then further upset about what he said next that I hardly took note of that.  When I told him that I was having a lot of nerve pain, he said that generally that decreases with time, but it could be a year, or it may never go away.  He said that he has actually had to go back and cut nerves that were originally NOT cut, on people in order to get the nerve pain to stop.  So from that statement on, I’ve been a bit in the dumps. I’ve also been perseverating a bit on, and feeling a bit angry about how much time I still have left with this treatment.  I think being in pain makes it seem even longer.  I still have 6.5 weeks of radiation, then 3 months cooling off, then, left mastectomy and bilateral reconstruction. Then, i still won’t be quite done with the Herceptin chemo.  At this point, more surgery is not sounding very reasonable.  I’m hoping that by next week I’ll be able to see the light at the end of that tunnel more clearly again.

With all that said, I’m actually feeling a bit better even as I write. (See, Blahging is great.)  I’m sitting here thinking about all the good things that have happened this week.  I have very supportive family and friends.  I already mentioned the taco and latte’.  In addition to that, and my Mom doting on me most of the week,  this week alone, I’ve had flowers sent to me by my Uncle and Aunt, my father in law, and 2 of my friends Cindy R and Jenny C.  I’ve had friends bring me food….Lisa C, Jenny, homemade spring rolls by Roberta, and people take me out to lunch, mom and Cindy R.  One of my out of state friends, Kristin T. sent me a very thoughtful care package and I received a sweet note and a gift card from my 90 year old friend, Vi.   I received get well notes from my co-workers, supportive statements on my blog, personalized supportive emails and texts, and all of my neighbors got together and signed a card and gave me a gift certificate to the local Soup Peddler.   I’ve had my Words With….. Friends, up, playing words at all hours of the night, and I think I may have won one gaim.  One of my friends even gave me the gift of an old memory with his pledge to play a “reunion” rock show, which is normally out of character.  I got to go out to the ranch on a beautiful day with my family, my son learned to pee pee in the toilet, and my husband made me an awesome dinner of grilled shrimp and those awesome bacon wrapped cream cheese stuffed jalapenos!

I got to do modified yoga once, and got to go out and walk on the greenbelt twice.  I even found a new, even closer to my home, trail entrance.

One of my good friends told me that I looked great when he saw this photo of me at my, ‘Fist Punch’,  Gus Fruh, trail entrance on my first day out after surgery. 

Not really looking great, but sporting my new “fast runner look” on the right side.

Thank you for the compliment, though. J

Oh yes, I have not forgotton about the wonderful massage that i had that was set up for me before my surgery by my sweet friend Cindy S. Or, the awesome time i had hanging out with my BFF, and at the Downtube Shifter Tube Top Extravaganza.  Thanks to everyone who came out to celebrate that day with us!

Thank you all again for your love and support, and your reminders of what keeps me treading forward.  I think next week will be a better week.

Emily