Tuesday, February 26, 2013

I beat to a different drummer....

Friday, 1/25, I had my top-of-the-line pacemaker defibrillator installed.  

The Medtronic BiV Defibrillator.  

Here's what I learned about this device:

>  The device is inserted under the skin during a surgical procedure.  Three electrical leads come from the device and attach to the heart.

>  A small incision is made on the chest allowing access to a vein.  Two thin electrical leads are inserted into this vein, one at a time, and then into the heart.  One is placed inside the right atria (upper right chamber) the other is placed into the right ventricle (bottom right chamber).  A third lead is threaded into a vein on the outside of the heart at the left ventricle ( bottom left chamber).  The leads are tested, and then attached to the device.  This device is battery driven, and about the size of a large pocket watch, or a small hockey puck.   The device is then implanted under the skin.  In my case, the device had to be implanted under my left pectoral muscle.  Incision is about 3-4" long, in the crease of my arm/shoulder.  

What will all that do for me? 
-  The pacemaker function of the device, delivers small electrical pulses to the heart through the leads.  This resynchronises my heart rhythm giving me coordinated pacing to both sides of my heart.  By beating in sync the heart is able to more efficiently pump blood through the body and help reduce the symptoms of heart failure.  
-  The defibrillator function of the device, detects when there is a very fast, unstable heart rhythm.  When this detection takes place, the defibrillator will deliver a therapy shock to my heart.  This shock (according to my cardiologist) will feel like getting kicked in the chest by a horse.  If my heart doesn't respond with a normal rhythm, it will deliver additional shocks until it does.  By automatically responding to these fast unstable beats within seconds of detection can save my life instantly.  I'll gladly take that kick in the chest!  
-  There is a monitor, here in the house, that is configured to my device that gathers data every day.  If there is a problem or defibrillator event, the data will be sent to the cardiologist office to review.  

I've been back to the cardiologist and my heart is pacing.... There have been no "events" of horse kicks.  Whew!  

As much as I have learned, read and researched about cancer, I have not done the same regarding my heart.  So a lot is new to me.  I have become much more diligent in this area.  

So, that was the technical, clinical stuff..... 

Here is what occurred.....  :)

Day 1 - The morning started out at The Heart Hospital admin area.  From there I was sent to a regular room to be weighed, poked, prodded, told to strip, and put on a very  sweet hospital gown.  The worst part of any surgery for me is getting the IV started.   When I was still living in PA, one of my best friends was an IV Nurse at the hospital I frequented.  She was, and still is, excellent at her profession.   My veins/arteries SUCK.  They are sclerosed, tiny and roll away from any danger of getting poked.  My friend and I would make every attempt to have her arrange to do my IV for surgeries or tests.  I need to bring her to TX!  I miss my buddy on many levels.  (Love you lil Cyn!)  

Next, I am picked up by wheelchair and whisked down the hall and into a very cold surgery room.  Wide eyed and awake.  I have had countless surgeries, and still it freaks me out when I hit that room.  Now what happens next I found a bit odd.  I had to get myself onto this very narrow table, with what looked like a blowup sectional pool float on it......  in an hospital gown..... UNTIED..... Sigh.....  I found that this blowup float was very warm.  Once I got myself balanced on it, they quickly grabbed my legs and arms, slipped them into more warm floaty long sleeves, and strapped me in.  The Anaesthesiologist kept talking to me, and said he was giving me some drugs for my contrast dye allergy, and something to relax me and fall asleep.  For some reason, I remember announcing to everyone, in my outside voice, "OH CRAP!!  I left my glasses on!".  He said that they were not on.  But I insisted they were, and I struggled to get an arm free to take them off.   I heard those gathered around me say that they aren't on..... that was all I remembered of that room.  Happy drugs administered..... shut me right up about those glasses!

Next thing I know, I open my eyes, and try to blink away the revolving ceiling tiles, lights and clock on the wall, in the recovery room.  Achey shoulder pain.  A little stingy at the incision.  The clock on the wall moved around for 45 min. before  I am sent back to a regular room for the night.

I can see a big bandage on my left shoulder, and moving is difficult from pain.  What's even worse is my left arm and hand are primary.  My left arm was strapped to my body to keep me from raising it.  Eating was a challenge as I am unable to hold on to any utensils with my right hand.   

Pain through the night was moderate, it was hard to get comfortable.  Pain meds helped for sure. 

Day 2 - my cardiology surgeon came in to check on me and talk about my device.  She moved my left arm away from my body and it was quite swollen and incredibly blue and purple into my forearm.  Hurt like a mother too!  Actually hurt more than my shoulder.  She told me it was blood pooling from the surgery and will be gradually absorbed back into my body.  We went over the surgery and how she had to place my device.  Due to my mastectomy, I have skin that is literally thin on my chest.  Therefore it was placed under my pectoral muscle.  We also discussed restrictions and then she sent me home!  

Day 3-5  - my left arm remained swollen, sore and purple/blue.  Moderate pain continues in shoulder and under pec.

Day 6  - began seeing more blood bruising showing throughout my chest, abdomen, ribs and back.  

Day 7 - rough day, very tired and BP low causing light headedness.  Called Dr and reduced some of the BP and water retention meds.  Moderate occasional pain.  Sometimes I try and use my right arm strength to push myself up, even though I have very little strength in it.  Therefore, when my right hand/arm slips or buckles, my body weight falls back onto my left arm.... Weehoo!!   Incredible pain. :(

Day 8 - One week since surgery.....I took the bandage off!  The incision looked good.  I could now really see the device under my muscle.  Not bad at all.  Very tired and sore in my shoulder.  During the night I had a 'moment' while sleeping on my right side, knees pulled up.  I felt a sudden jolt in my chest/body that made my whole body jump and awaken. I laid there, wide eyed, afraid to move.  WTF was that??  It didn't feel like a horse kick.... But it felt like something!

Day 9 - started out good. Late afternoon tired. Painful. Its very hard not having my left arm to use for strength and reaching.  

Day 10 - Superbowl Sunday - overall a painless day for my shoulder.... A few times it reminded me it was still healing with a sharp stingy reminder.  My stomach on the other hand, is rebelling against all the crap I crammed into it today.  SuperBowl Sunday party, food, drink.... Partied way to hardy!  Whew..... Later that night, I had gone to bed and fallen asleep.  Shortly afterwards, I awoke to my gargled coughing, and what I thought was the cat Bogie purring somewhere on the bed.  Once I realized Bogie was not on the bed....nor even in the bed room at all.... it became clear that purring noise was coming from me.  My breathing had become liquidy and raspy.... It was me breathing in and out that sounded like the purring of a cat.  I sat up in bed... Continued to cough and breath like a purring cat.  I got up, and decided to sit up in the living room to write my notes.  Additionally this week has led to a lot of dizzy/lightheaded moments.... Moments whereby I knew I needed to sit rather quickly, or fall even faster.  Called Dr, and he reduced BP meds.   But still it continues to plague me. 

Day 11 - Cardiologist day.  Incision and lead placements looked good.  Bottom 2 chambers are in sync.  She indicated my device placement is going to be sore for a long time.    We'll schedule an Echocardiogram in about 90 days.  Pain is relatively low again today.  Exhausted though.  Gained 3 lbs since yesterday's partying event.....Need another water pill this afternoon. 

Day 12-15 - Very low pain level.... I have achiness in my shoulder at the device area.  Nothing to complain about.  

Day 16 - I was brushing my teeth in the morning, and as I bent over to spit, I felt this intense kick from inside my ribs..... quick strong kicks.... I stood up and it stopped.  I recalled Dr Khan had said the 3rd lead is in a vein on the outside of my heart.  I may feel that one on occasion, like a little twinge.  

Day 17 - I had rough restless night.  Got up early with the dogs, and had another pounding event against ribs. Lasted about 10 seconds and stopped.  A few hours later while I was taking a shower and it started again.  This time way more intense and lasted about 90 seconds. A very LONG 90 seconds.  It was rather freaky and made me feel short of breath.  It was like an alien was trying to push its way out of my body.  I got out of the shower, laid on the bed on my back and it finally stopped.  Damn crazy scary for sure!  I was able to call the cardio clinic 24/7 heart care center, as it is a Sunday.  One of the cardio nurses told me that if it happens again to go to the ER to get the device checked.  A lead may have come loose and could cause an arrhythmia problem. I had no other incidents that day!  No visit to the ER!  But again sleeping was rough, as it was on my mind.

Day 18 -  The cardiologist office called me before I could call them, to arrange for me to come in and get checked.   She had to lower the voltage to the 3rd lead that is in that outer artery ... That particular lead is not attached.  It is free floating in there, and on occasion, like when I bend over, it touches against my diaphragm.  Causes an intense hiccup like effect..... or, like I said, an alien was kicking its way out!  Very scary feeling, but not painful.   So she lowered the voltage from 3.75 to 1.5.  Since then, the kicking as subsided.  I only feel it occasionally.  When I do, it's minimal.  :)

To date, all has been well.... I still feel an irregular flutter at times throughout the day.  My left arm is functional again.  Still achy and a bit weak.  I need to be careful for a few more weeks and not overuse it, or have sudden reaching moves, lift heavy, etc..  Allow it to heal and keep those leads where they belong.  

In April, I have a few cardio tests to measure the successes of increased heart efficiency.  I could potentially see an increase of 10%.  That would be awesome.  Regardless, I am now protected from sudden death caused by an unstable, fast heart rhythm.  Priceless. 

A huge THANK YOU to my sister for adventuring to TX to be my constant companion and caregiver the first two weeks.... She was both my arms!! I was the baby sister again - getting me dressed, prepping food, laundry, dishes, feeding dogs, driving me around....  I couldn't imagine having done this without your incredible help. :)

Another huge THANK YOU to my TX friends, who are my extended family, for helping not only me, but for supporting Christy and giving her a break from being the main caregiver.   Additional heart hugs to Steph for checking in on me, and also supporting Christy through surgery day.  

I love you all!

Stay strong,

Wednesday, February 20, 2013


I am humbled and honored to be included as part of the myHeartyourHands.org - 28 Day of Heart - blog posts!!  One of the co-founders of myHeartyourHands had asked me to share my life's adventure in cancer treatment methods and the late effect side effects related to those treatments.  Please click the link to the myHeartyourHands latest blog post titled Collateral Damage: Secondary Cancer(s).  http://www.myheartyourhands.org/?p=1074
And while you are still on the website, read through all the other posts to learn more about this month's awareness for Heart Disease, and in particular, choose the About link to learn about incredible lives of the founders Steph and Judy.

myHeartyourHands Mission:
- To raise awareness regarding the potential LATE EFFECTS of cancer treatment[s] among survivors, healthcare providers, and the general population
- To promote eye, tissue, [and] organ donor registration
- To fund late effects research aimed towards early detection, effective management, and ultimately, prevention

Saturday, February 2, 2013

Chemo Brain Bites

I know that having memory loss really, really works my partner's very last nerve.   And I really, really try very hard to not let it happen.  But it does just the same.  

I say it's chemo brain..... She says I just don't listen. SIGH...... To-mA-to, to-ma-to.... She really understands, but busts me on it in the most caring way  :)

I often have that deer in the headlights look when questioned by her..... "don't you remember???" "What did I say we were gonna do?" "Repeat after me...." "make sure you log a note!" ..... ok......I really do try..... really, I do!

I say it's chemo brain.... My friends say you don't remember that??  We were just there?  I say seriously?  I was there too?  And I know I have that blank look..... Or, I get the text about something we are doing together, and  I'm like what? Ummmmmm we just talked about that last weekend!  Or there's always the  Don't you remember, I just told you that story! line I hear.  Sometimes with much prompting, I remember.  Sometimes I just pretend to remember, to make my brain stop hurting......  ;) 

And of course it goes the other way, as I will tell a story, and then find out I already told it..... Ohhhhh no - I am becoming my parents!!!

Now, I'm not saying that sometimes there aren't teenie tiny occurrences of my truly not paying attention or listening....  Ahem. My friends may have something to add to that statement.... true?

My kids show great patience, as I know I ask them more than once about an event or I am surprised by news I probably heard about more than once already.  Thanks guys!  I love you so much!

It does scare me.... as time passes it gets worse.  If I don't make a note, I totally forget what, who, where, why, how, when.   My Google Calendar and iPad Notes apps..... priceless!

When I was still working, it was so freakin' scary.  I would go to a meeting, make notes, and till the next meeting not even understand my own notes.  I would often go back a couple weeks and read a mass email I had sent out, and think as I'm reading it, well that was pretty damn good!  I just don't remember putting it together! It was always like reading a new message!  Surprise!  I wrote processes and procedures for users of our software.  I'd look back on past documents to review and say (to myself, of course) Awesome Girl - You nailed it!  Amazingly, I would have the details correct!  My fellow colleagues, and managers.... close your eyes to that! ;)

Sometimes I watch an entire movie and have major trouble remembering it.  Great.... During my chemo, we went to see Mission Impossible III.  I stayed awake.  But remembered nothing.... not a thing except Tom Cruise repelling down a building.  Holy bloody hell.

I can be reading email, or watching tv, and suddenly I remember, oh I need to look something up on the internet.  I click the new tab, it patiently waits for me to type something.... little line cursor blinking, taunting me....and nothing.  I can't remember one second later what I wanted to look up!  Sigh.....

It's not like I'm 70-something.... I'm only 50-something.... Aren't I? 

See, my friends???  I have a legitimate excuse for all those kinds of memory lapses.... See?  It even has a wiki page - http://en.wikipedia.org/wiki/Post-chemotherapy_cognitive_impairment

Chemo brain, chemo fog, or chemo daze long term effects  exist... it must!  It must indeed.  I've got plenty of chemo sisters and brothers who agree!  :)  Right???  Hello??? Help a sister out here!?