And So it began

"ONCE UPON A TIME"....there came along this little lump...insignificant really when you compare it to the entire world of lumps. That is, right up to the point that it wasn't...insignificant I mean............... and so began my journey.

A NEWER SHADE OF PINK...now I more then SURVIVE...I am learning to THRIVE...

OF COURSE... we all know things are bound to get a little crazy with a surprise around most every corner...not to mention an assortment of bumps and bruises along the way...but I am ever thankful for them all...they have all made me who I am. So buckle up, hold on tight and enjoy the ride thru what I lovingly refer to as LIFE


Sunday, July 30, 2017

The Tricky Ticker...

 And the Drain saga continues...SADLY!!!

As the evening went on....still no drainage....not good!!  I was getting sorer and sorer and more swollen with still minimal (if any) drainage happening...so I called a friend, who is a doctor, to have him come and just check that all the locks and stops in all this mass of tubing we all open and theoretically ready to do their job.  He gave me the "ok" but told me if I got really uncomfortable with all the swelling then maybe another ER visit would be the best but it was totally up to me to judge.  Honestly I was beginning to feel kinda lousy but still couldn't decide.  ER visits are my biggest indecisive hurdle...I will go back and forth and still never decide....if I was in big trouble I would probably still debate with myself till I talked myself out of it.  It is just such a long wait and if you don't look as bad as you feel then you keep sitting in limbo & sadly (after yrs of debilitating migraine headaches) I can put on a real "Oscar" performance & downplay just how bad I feel.  If your pleasant and cordial the medical staff don't think you can be feeling that bad.....if they only knew.  I digress....anyway after spending the evening with a dear friend, Miss M, I was still humming and hawing about what to do but in the end, the fact that my doctor friend had said maybe I should go....I blamed him and said okay BUT...if they couldn't do anything about this drain tonight...I was so coming back home quickly.

I geared myself up to look as bad as I was feeling...to which Miss M told me I was looking totally krappy anyway so I would be good.  We get thru triage really quickly and it's only a couple hr wait so I'm feeling pretty good about it.  The first nurse we see it my nurse from the Sunday night ER trip so she knew about all this craziness of the last 50+ days so she gets me moved up the line to be seen asap and gets me some pain meds.  10 minutes later my heart just starts pounding hard enough that you could actually see my shirt move with it.  Over the next 10 minutes I started feeling warm & nauseated...even my scalp started pounding making my eyes bounce when I shut them.  Miss M goes and tells the nurse and she comes over a few minutes later to take my vitals....which startled them....I of course just thought my heart was pounding hard.  My mistake....my heart rate was 206 and my BP 198/1?? crazy high 100's number.  Suffice it to say...I really need to get way more "edumacted" about my BP numbers.  I know my resting heart rate but no clue as to what those 2 numbers mean.  WELL...the nurse came back with a wheelchair and whipped me into the "Emergent" part of the ER in the big curtained room right in front of their nurse station and the room was instantly filled with people hooking monitors up and taking blood and extended ECG strips to see what was going on.  They tried all sorts of tricks to get my heart to back into normal rhythm and finally gave 3 injections and nothing worked....it went on for about 3 hrs before it just did this little flip thing and went back to normal.  My BP took a few more hours to really settle back (and acted up the next day again). They paged Cardiology who didn't think it was critical to be seen at 4am so they would check on me in the morning.  They eventually moved me out of that section while I waited for my bed on the surgical floor.  OH YA...they thought it might have been caused by the back flow in my chest abscess from the "new" drain still NOT working.  They tried repeatedly to get it to do something and finally decide to surgically replace it in the morning....again...

Friday, July 28, 2017

Gotta Be a FULL MOON 'Cause...

...NOW begins the total bizarreness of this mess...

As instructed I called the Breast Center the next day (as per the ER instruction)...it took 3 phone calls and 2 hours for them to figure out they had the orders and that I should come in and see the doctor. In the middle of all this, their booking office called me to schedule an ultra sound for the next morning. When I arrived the nurse very quickly told me they don't deal with drains in the clinic....DUH!!!  I had to wait 2hrs to see the doctor, who comes in and immediately it's obvious that she hasn't really read the ER report.  I give her the quick story of the night before and she tells me that I won't get my drain addressed until later in the week at the earliest & that other patients have much more swelling then me.  I'm not concerned about the swelling except that it might be infection not lymph backup.  She then admitted they read the report wrong and my coming in was a total waste of time & that she would call me when I could get the drain addressed.   I WAS SOOOO BEYOND UNIMPRESSED....I had been told the night before it needed to come out today & now I was in a holding pattern....WHAT?!?!  I called my ID doctor who had been following me VERY closely since the beginning....he said I can wait a couple of days but if the build up increased, to come back to the ER and they would have to deal with it.  So home I go a smudge calmer but still in pain.  VoR has been travelling for work most of this entire time so I have been relying on VERY DEAR FRIENDS to get from appt to appt since not only had VoR got me on house arrest...I couldn't drive if I wanted to with the restricted movement I have right now.  Later that evening my ID doctor called me to just check in and ask that I have him paged the next morning when I going for my ultrasound....after hours call at home....impressive!!!

So...I get to the BC (Breast  Centre) at 8am sharp so we can get this ultrasound done before my bone scan @9am.  I check in and let them know to page ID....and wait....and wait....and wait.  There really wasn't anyone else there for ultrasounds so at 8:45 I went back to the desk and they call out the Radiologist...cause now ID was there waiting too.  Well....she came out and blews a gasket accusing me of coming in without an appt...so they are trying to squeeze me in and it may take hours.  UMMMM....I calmly informed her of the appt made by them yesterday & that I had to go right away and do the bone scan injection but I would be back (I had 4 hrs to kill till the actual scan) to which she informed that quote "they would just miss their lunches so I could get my ultrasound done"....WHAT!?!  When I got back from my injection they got me right in (& again paged ID) and did the ultrasound...great.  THEN in came some doctor saying she was there to put in the new drain.....again WHAT?!?! Yesterday they said they didn't do that in clinic....now they suddenly do??? and according to her "all the time" as she yanks out my drain.  You have to understand when the specialty team put the first drain in they said it was such a complicated access that IF it had to be changed they would have to do it.  Again with my confusion over  her wanting to do it.  She is getting ready to put the new one in and I'm like HOLD THE PHONE HERE!!!  Nothing is getting done until my ID doctor gets here. She then told me they are doing me a HUGE favour cause I didn't have an appt...and they were squeezing me in.....ummmWHAT!?!?  After 10 days in the hospital originally...By this point I am getting really tired of the right hand not knowing what the left one is doing.  I stood my ground and insisted that NOTHING be done till ID arrived.  He got there shortly and said they could go head since he had a current look at the state of my abscess.  It took her 3 times to put the drain in the right place so now I have 3 open draining site in my chest wall...2 with no drains, just dripping....attractive right!?!?  Lets just sum this up with...THIS DRAIN DIDN'T WORK!!!! It leaked down my leg on the way home and never drained more then 10cc of fluid (the saline amount they flushed the line with....not from me). OYE!!!!

Wednesday, July 26, 2017

AND SO IT CONTINUES....

There has been so much craziness happening in the last month...I don't even really know how to catch up.  It has been such a continuing gong show adventure... it's hard to believe it all and it's all been  happening to me!!! I will do my best to just stick to the "Highlight Reel" and give you the readers digest condensed version or I could be blogging non-stop for days to try and catch you up on all the details.

Days 30-37 - This time slot was actually pretty unremarkable filled with daily home care nurse visits which, BTW are not all created equal.  There have been some good some....some interesting to say the least...but I found an absolute gem and so I called my care coordinator and had Miss C assigned as my primary care nurse....so when she is working I get her.  The continuity of care has sure made it better for me & especially my poor skin. I react badly to most dressings & bandages so I am the 1% that makes her work more difficult...I wouldn't trade her for the world!!!!!

So I followed up with the ID (infectious disease) doctor & he was pleased with the way it looked but still extended my IV antibiotics to Aug 18th ....ARGG!!  He wants to be sure it good and gone and I can't fault him for that....I will just continue with the "pioneer basin bathing" a while longer....sigh!!!  So his nurse replaced the dressing on the drain (I don't think she had it much experience) and managed to kink the tiny drain hose coming out of my chest completely in half.  I didn't realize that until hours later when I realized there wasn't much in the drain bag and I was starting to feel puffy in the right armpit.  VoR discovered it at supper time and did his best to try and straighten it and tape it in a better position.  Sadly that kink had damaged the hose and we completely lost the suction so the drain was useless.

Over the next 3 days, super nurse Miss C, did her best to try and get it to work but by Sunday she told me to go to Emergency and have it checked because it had been just back flowing all the infection back into my chest...KRAP!!  We all know the last place you want to be is ER especially with a huge infection, knowing it's gonna take hours & let's face it....you're gonna sit there for HOURS.  Apparently...a PICC line in one arm, a chest drain in the other side & having ID paged (as per their instructions) gets you moved up the line at light speed.  Unfortunately for all involved & me...there were 7 multi trauma car accidents that same afternoon & Trauma Trumps Everything...as it should.  So I was away from the masses but still sat for a few hours as they dealt with the trauma patients and when all the doctors got to me they decided that the quickest way to deal with the pump was to go back to the Breast Centre and have them book me into the specialty (angio) clinic and have the drain replaced tomorrow. So off I went with a ton of pressure in my swelling chest, looking forward with baited breath till the next day.   

WAS IT GONNA TURN OUT THAT SIMPLE.....
OF COURSE NOT....

Monday, July 17, 2017

QUESTION OF THE WEEK TO ME...
How can you still be smiling???  

The twists and turns of this seemingly simple surgery on June 1st just keep coming faster and more left field the longer we go....keep reading....its gonna take a few posts to iron this all out for you.  I am just beginning since this Troll dropped into my life 5 yrs ago...there is not "seemingly simple" anything when it come to my health anymore.  At least I can honestly tell you first hand....looks can be deceiving....nothing ever ends up being a simple....and you just aren't in control.  What you do with the krap is what will define you to yourself and every single life you touch.

I have had more then a few people shocked at my attitude & and ask "How are you still smiling and positive after all the problems and issues since your surgery?  I would be so angry at this point"   I have never actually thought about it....it's just the way I am.  So I did some SERIOUS pondering on it and this is the best way I can explain it....here goes...

I am just really aware of just how blessed I am that I have never had a second of the "why me...this isn't fair...God must hate me....I must be an awful person".  Those trains of thought never cross my mind.  It is a true gift that God has blessed me with when I was born into this world. He also sent me to a long line of sassy warrior women in my family tree who taught me thru words but mostly example, some very powerful lessons that have kept me centred and focused thru everything.  **When times get tough, you just pull those "big girl panties" a little higher and a little tighter and keep walking forward (or slugging thru the sludgy muck it sometimes feels like), one step after the other...always forward. **No one else needs to suffer from what you are facing. **Always reach out & find who needs you to be YOU to make it thru their krap. **It's NOT about you...it's about you being the spark for someone else to grab tight to for those dark & scary moment they are dealing with. **Always be true to the YOU you know you are outside this bit of muck you are slogging thru right now...it DOES NOT last very long in the grand journey of your life.  It beats the alternative...I am still alive and kicking.

You never know when you are put in the path of someone else...being the answer to their prayer they maybe didn't even know they said but God was listening and answered. This incident shows what I mean...

I was in the Hospital...AGAIN...down in the general ultrasounds area waiting for yet another ultrasound  laying in my hospital bed in a little cubby hole in the wall where 3 beds can fit as we all wait for transport to take me back to my room. This is where scans are done for both in-patients and out patients so there is a high turnover rate in this waiting area. In walks this very nervous 30 something woman to the waiting area...you could just feel the fear bouncing off her,& see her coffee cup shake. She just happened to look over at me and I smiled.  A few minutes later she cautiously came over to the end of my bed and asked how I was feeling.  I said "Fine...how about you"  She gave me the smallest hints a  grin and said she was "fine" then proceeded to tell me what she was there for and that she was really nervous.  I told her I had the same thing done just a few moments before & if they had to biopsy something, I had done that too.  She looked surprised and gave me a more relaxed smile.  I assured her it wasn't that bad and she would do great & not to be worried....she had this!  She let out this sigh and a big smile (and less shaky hands) said to me. "Thank you I so needed to hear that today, I am here alone and it's really scary not knowing what they are gonna have to do....like a biopsy too really freaks me out but I am okay now...If I get scared in there...I am gonna think of you & what you said & know I CAN do this" As they wheeled me out of my little cubby she looked over and winked and gave me a thumbs up and mouthed THANK YOU.  I know the Lord was in charge of that little interaction/tender mercy for her.  I am truly humbled that I could give her that little spark to hold onto in her scary moment then and later if she needed it.

You never know when you are put in the path of someone else...being the answer to their prayer they maybe didn't even know they said but God was listening and answered. That...if you come right down to it...that is what this is all about.

Saturday, July 15, 2017



It was my 5yr Blog Birthday yesterday!!!!  

How did I miss that for crying out loud?!?!?!  Well...to be honest, my life really isn't my own these days & I am a lot-bit preoccupied with trying to recover and heal  (45 days so far...and counting)...so for my big sister...who is more on the ball then me...reminded me during our chat this morning.


Thanks for the reminder!!!!  You always have my back
xoxo

Sunday, July 9, 2017

BACK TO MY STORY...

DAY 20-30 - POST-OP

 The Surgical team from the floor I was on definitely had a different idea for my care then the Infectious Disease team had and most of the time they weren't talking to each other.  Lucky for me I had a 2nd amazing nurse (Miss S) who kept the ID team in the loop so they could over ride the silly ideas the surgical team.  They figured that I was getting well enough to just pull the picc line and send me home with oral antibiotics...that was shot down by ID team in record time...lol. On day 20 they decided to sent me for yet another chest x-ray but this time they added a chest CT scan as well....that was enlightening. They discovered that my abscess was over 13cm & pancake shaped....very thin front to back and looked like a intricate beehive instead of one big sack.  They were thinking of trying to drain it but they weren't sure they could drain it even if they wanted to because of all its little pockets.  I had barely gotten back to my room when suddenly they were there to take me down to this fancy X-ray guided surgical room where they do all the tiny vein work so they could put a drain in my chest wall.  It was all hi-tech and sterile & kind of interesting in a "if it wasn't me on the table" sort of way.  Luckily I hadn't had a chance to eat anything before coming down because they can sedate you so they want your stomach empty.  I managed the entire thing with just some "happy juice" so I was awake and interacting with them.  WOW...did that drain work....it emptied out 125ml from the abscess within the first hour & has kept up a solid 50-70ml every 24hrs since.  Yup...I still have "Bubba" stitched into my chest wall (on the right) and "Petunia" the picc line stitched into my left bicep...which are so specifically placed, that the slightest change in position of either lines means a trip back to the hospital so they could be corrected.  SADLY...that means NO showers, NO stretching or reaching, NO med-heavy lifting....which leaves me with binge watching Netflix or reading a not too heavy book.  Oh ya...that hyper nerve glass sensation from elbow to elbow....still alive & kicking.  I guess you could say I am not a ton of fun to hang out with at the moment...but I jumped ahead again....  When I got back from the drain procedure I was sitting in my chair and all of a sudden I felt GREAT!!!  No deep burning in my chest or feeling like I had a cast iron pot sitting on me and I could take deep breaths without even thinking.  I had been on 3% oxygen for the last 3 days because I couldn't keep my sat levels up...suddenly they were back to normal & that boa constrictor around my ribcage was gone.  Who knew that all those issues were due to all this infection fluid in my chest cavity.  I was TOTALLY amazed!!!  Sadly...it only lasted about 4hrs then all the old symptoms began to return, not to the degree they had been but back none the less. I had a really rough night so they sent me for X-rays, ecg & blood work to rule out a cardiac event...yup it was that bad.  I sat up most of the night in some of the worst pain and strange sensations of this entire adventure.  But everything came back clear so I got to "blow that Popsicle stand" and finally go home.   

Here I sit day 31 and feel the same with the addition pain from my skin reacting to the bandaging they have to protect both the picc & the drain. Still no showers (I hate 1800 sponge baths....just sayin) & I have a next door "hairy god-mother" who comes and fixes my unruly mess of curls every few days & even takes me to her home salon for the most amazing hair washes and massages. The plan at this point is a follow up with ID in a few days to make sure the IV antibiotics are still doing their job and hopefully be done with the IV treatments (every 8hrs) by July 14th.  The tricky part is that my drain has to be below 30ml over a 3 day period before they will remove it and at this point I am WAY too far from that number.  VoR has me on "house arrest" & I am unable to drive anyway because of restrictions in my movement...and pain meds...so I am going a little stir crazy.  It has also been pouring rain for the last few days so I don't even get my outside strolls in.  Oh well....this too shall pass.

I am just extremely grateful for all my dear friends who have dropped their own lives to come to my aid & once again, having the Lord watch so closely over me and setting me back on the path toward healing.  This is a drag for sure but WAY better then the alternative!!!

Wednesday, July 5, 2017

....continued again...

Wanna talk about feeling KRAPPY!?!?!?

13-19 DAYS POST-OP...

So...not long after getting admitted I was moved 4 times in about 3 hrs & I continued to feel worser and worser!!!  By the time I got moved up to the "surgical floor" ward I was beginning to not really care how I was feeling just being adamant that I had to be home by the 15th 'cause Pragmatically Speaking & Hop were coming to visit for 6 days & I was NOT gonna miss that.  Well....this little chest wall infection had it's own plan & it was racing ahead fast.  Those first couple of days I was REALLY sick...sicker then I can ever remember being.  They were taking blood and giving me pain shots I couldn't care....now we all remember that I have a HUGE needle phobia...so you get the idea of just how bad it was.  The chest wall continued to get redder to the point of almost purple & the heat radiating off it could be felt thru my hospital gown before you even touched me.  Miss B (my amazing nurse) had the great idea of outlining the redness so we could better tell if it was getting bigger...so not really being contained by the antibiotics.  You could see it getting bigger & redder almost by the hour!!!  It spread from just past the centre of my chest to behind my armpit & started to swell so they took 3 huge syringes of fluid out of that chest wall.  I never really realized just how sick I was or just how awful I looked...but VoR was really worried but I was shocked by the fear & worry in his eyes.  He did what he always does & drew strength & comfort from the Lord & passed that peacefulness on to me.  I know that he & Pragmatically Speaking gave me a priesthood blessing but I don't even have a snippet of what was said but I began the long & slow turn & began the long and uphill road of healing.  He was not alone in his worry those first days....the doctors & Infectious disease were very worried too. They decided to put in a PICC line to save my veins & just started dumping antibiotics thru my IV while they waited for the culture to grow so they could hit it with the most effective cocktail.

For me the TRUE bummer was when I realized that VoR had gone to pick up Pragmatically Speaking from the airport & I was in fact NOT gonna be home for the entire 6 day visit.  I figured that by the 15th I would be well on the road to healing & a bit tender still but up & around & being me....WRONG!!!!  On the upside they came & saw me everyday at the hospital, but it gave them some really great bonding time....and as it turns out...a free trip for me to go visit them when I am totally healed...so a convoluted win-win.  Pragmatically Speakings other half came to town to surprise us all too so a real tender mercy # (ah heck...who can even count them at this point?!?!) for that little family & us.


I gradually started feeling a little better....probably aided by some dear friends bringing in some yummy contraband treats for me....THANK YOU, THANK YOU, THANK YOU!!!  You see...when your a diabetic and have food allergies...the limited hospital menu gets even smaller!!! Poached chicken breast, instant mashed potato & over boiled peas & carrots...OYE!!!!   But I digress...

...days 20-22...to come

Sunday, July 2, 2017

...Continued....

I'm just gonna throw it out there....but that blasted torture trap binder was just the tip of this Titanic size iceberg!!!!

9 DAYS POST-OP...  
 I went into the dr's office and met with one of her partners who was shocked....to say the least....that I was still wearing that torture trap.  Needless to say...we did in fact "ripped that sucker off" and joyfully threw it out. She checked all my blistered and seeping skin from where it had dug into me and said it looked clean & healthy.  She assured me that the roaring pain in my chest & that over-hyper nerves from elbow to elbow (like the arms were bound in broken shards of glass...always a personal favourite sensation) would quickly settle down, but told me to just be patient but if anything changed or concerned me to just call and come back in.  So I spent the next 4 days taking walks and trying to slowly get some mobility back and staying on top of the pain....which, for the record was not getting any better by even a smidge.  Now I am NOT some pain wimp....30 years of migraines almost daily has taught me a ton pain management tricks to help cope without taking pills.  I usually sit at about 6-7 on the "pain scale" on a daily basis...so I just figured out/trained myself to departmentalize the pain and carry on with life..."I have pain...it doesn't have me" decisions a long time ago.

13 DAYS POST-OP...
I noticed, but didn't give it much thought, that I was just really feeling dehydrated even though I was drinking a ton of water...but just couldn't get over that "mouth full of cotton balls" feeling & I noticed that my right (original mastectomy side) chest wall was getting red.  Went to bed that night...(okay...let's be honest...I have been sleeping in a recliner since surgery because of the boa constrictor feeling of my chest & rib cage) and got up to go to the bathroom about 1:30am and realized that there was something running down my body hitting my foot.  Yup...my incision had sprung a leak and it was draining down the front of me!!!!!  Sure freaked me out for a second but it was clear(ish) so I grabbed some Kleenex and called my Homecare nurse.  They said to just keep it covered and come in first thing in the morning...so you can bet that 8:30am I am sitting in the office with the nurse.  She put a dressing on it & noticed that my chest wall was kind of red and warm so she told me to phone my doctor. Then just as I was getting ready to leave she had a hunch to just check my temperature....37.4*c (99.32*F) a very low-grade fever but told me to check it again in 2 hrs at home & to be sure to tell the doctor and call her, the nurse, back & let her know if it changed. So my dear friend (AB Chick) drove me back home & waited while I phoned the doctor, who told me to go directly to emergency!!!  I HATE going to the ER cause 9 times out of 10...they don't find anything and just send you home....always a HUGE waste of time....So I gathered a few things and AB Chick drove me the 30 minutes to the hospital & waited with me till VoR got there.  When they checked it at the ER....less then an hour later...it had jumped to 39.7*C (103.46*F)....THAT GOT THEIR ATTENTION & BAM! I was sent to observation.....maybe this time was gonna be different.  They immediately checked my chest wall which by this point was  so red and really warm...you could feel the heat radiating off it & it had spread a bit from when I had seen the nurse.  So they started taking the usual samples to run tests on including a swab of the fluid that was running down my chest & the blisters.  Next thing I know, an Infectious Disease team show up at my bedside telling me they were working my case & following me closely. I don't remember a ton of details other then...they were admitting me!!!!  Guess this trip to the ER wasn't such a waste
...to be continued...AGAIN