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


Wednesday, August 23, 2017

PICCing it Back Up...

So Monday morning rolls around and VoR, me & the Empress of Awesomeness...who btw have been having WAY too much fun going off doing the "touristy" stuff with her dad and sitting with me binge watching 2 seasons of Poldark (look it up...very good period piece...as is usual from the BBC). It has been such a blast having her home again for a few days....AND she made me pickled carrots!! Be still my heart....now we just sit and wait 2 months to eat them....sigh. 

Anyway...back to Monday. It 's just your typical "quiet off chemo week" ...NOT.  I started off the morning with my surgeon to just check on a bit of redness and swelling on the infected side to see if any draining was needed....I didn't think so but with it getting red and warm again...I wasn't taking chances.  She decided that it was okay and just keep an eye on it and to NOT over work that right arm.  Over-due anything....who me!?!?!  She must know me cause she made me pinky swear that I would, in fact behave. I did get her to STAT order a new PICC for me before Thurs which she immediately did.  Then we were off to the Oncologist for my "finished 1st chemo round" follow-up.  She took one look at the redness and swelling and got ID on the phone to have me seen before she would allow then next chemo round.   I love her....she is soooo meticulous and thorough I have complete trust in her. She STAT ordered a PICC too...lol.   We have to stick to the chemo schedule though cause Random Wisdom arrives on my "Off chemo wk" so I can keep her pregnant little belly and that adorable 2yr old "flighter" as far away from this toxic blend of nastiness as possible!!!  The Doc did go over all my last scans and tests etc and NOTHING is showing up so it would appear that once again....we caught that miserable little troll in his tracks.  I don't want to be doing this every 5 yrs....but I love that we are catching him so quickly.  

By the time we got home there was a message with an appt time for ID the next morning at 10:30. Just how I wanted to spend my OFF week...sigh.  By that morning the redness was mostly gone but the ID doctor didn't like how the chest wall is still soooo red and hot and angry looking and decided to switch up my antibiotic....I should have warned her about my 2% reputation.  15 minutes into the infusion I'm coughing and sounding hoarse and my eyes are a bit funky around the edges and the IV site is burning....yup they stopped that pretty quick.  She asks about the PICC...I told her Friday unless she wanted to make a call...she did...9am tomorrow morning!!  Take that Friday being the earliest appt!!  She obviously wields a lot of power...I am not complaining!!  The decision is made to come back to ID after the PICC and try the new drug again over a 2hr slower infusion and thru the PICC and see how it goes.  She calls 2 hrs later saying she has changed her mind and that we are just gonna add an extra dose to my existing antibiotic so it is every 6 hrs not every 8 and then come back to see her in 2 wks.  I hope this gives it a boost cause it is not looking like much has changed in either the look or feel of it in a few weeks and if this stuff isn't doing any good....lets not just take it for the fun of it....time to reevaluate things

So here I sit half way thru my 2nd round ...still feeling really good and honestly if it wasn't for the battery pack and antibiotic bag or the PICC in my arm....I could totally forget I am sick and fighting the Troll again and infusing copious amts of chemo drugs.  I am hardly nauseated at all but really tired...Pooped or Puking...a serious...
 NO BRAINER!!

Monday, August 21, 2017

PICC PANIC...RIP Petunia

When it comes to chemo there are only a VERY few but VITALLY important things that make this entire experience livable...1) Anti-nausea meds...2) Support team of loving family & friends...3) The innumerable amount of PRAYERS by everyone (I feel every one of them)...4) Feeling the closeness of the Saviour...5) A FUNCTIONING PICC LINE!!!

For those of you who are unaware of this medical marvel, let me take a minute and give you the non-medically trained/"Readers' Digest" explanation...

What is a PICC & why? A PICC line (Peripherally Inserted Central Catheter) is a long hose looking thing that a specialized team of nurses in the PICC lab insert into a major vein in your upper arm. The purpose (my favorite) is to save you from all those gazillion pricks (NEEDLES!!!) for meds or blood work & to protect your other veins from the IV meds you are getting.  They use an ultrasound to locate a large enough vein that pumps directly into the heart and then we are off to the races.  They give you a bit of freezing at the site and then start to insert the guide into the vein a bit then ultrasound recheck the vein to see if it is holding up to the stretcher they have in your vein. If it all looks good they then continue thru the vein until they reach the spot by the heart that is needed so that the (in my case) chemo gets pumped in and out of the heart directly. The length of the line is determined by your height and usually goes into the right arm as this is the most direct route to the "perfect" location...mine is 45cm long. They have to use my left arm because of the cancer on my right which makes the path longer and more difficult because they need to go past the heart and then back to that position.  Once they have checked the ultrasound again they send you for a chest X-ray to be 100% sure it is in position.  And that my friends is a PICC.



I can not stress enough my undying affection for my Petunia (my PICC).  She has saved me from far too many pricks from blood work, IV medicine to contrast dyes for MRI & CT's.  She is a champ and has served me honourably right up until...she didn't!!  Last Tuesday (the one between chemo) Hero nurse was doing the routine "flush" to make sure we had back flow of blood just in case....it's a saline flush that just checks for blockages or in this case complete failure.  We tried everything from waving the arm around to a hot shower..but soon come to the realization that Petunia had in fact...dropped the ball and gone to PICC heaven...a nice peaceful end for her...KRAPTASTIC FOR ME!!!  Seriously the only saving grace was that it was my off chemo week so we had the flexibility to get a new one. Then I remembered that we have this WRETCHED antibiotic that still needs to run every 8 hrs (KRAP! KRAP! KRAP!!!) I am sure you are beginning to get the picture....I NOW NEED AN IV IN MY ARM!!!!   Sooooo far past my "happy place" there is no going back.  Hero nurse assured me that she was really good at IVs and I do trust her completely but I still had to deal with the anxiety and stress and panic that this IV was gonna cause me.  I have in the past shared my needle phobia in great detail so you can see my predicament.  Way beyond that fact....having an IV in causes such severe claustrophobia and it is a battle every single second to keep from yanking it out.  I have to have it covered but some moments that doesn't even help....it's a constant battle of wills.  Then add the fact I only have a couple veins left on my left arm that are good so I am very protective of them...and the hunt for any said vein ends up being a "fishing expedition"...or at least they try!!  UMMM...NOT! They get one clear shot and if they don't get in on the first poke....just back that sucker out and find a "vein whisperer" cause this old broad is a one shot pony...you miss and you lose, just walk away.  Now I could go on for hours but I will spare you my needle ranting except to say....HERO NURSE EARNED HER TITLE TODAY!!!  She got that sucker in on the top of my arm (new vein) without a hitch....to quote my big brother...
"slicker 'n snot on a door knob"
Soo..my Friday PICC team appt rolls around and they check again for back flow and realize that Petunia has in fact left the building. So they decide that my trashed arm could use a rest so pull out Petunia and promise they will have me booked in before the following Friday (chemo day) and have my new PICC in place.  Good thing we left that blasted IV in "just in case" cause now it is gonna have to stay for an entire week.  So now begins the inner constant whisper....
"DON'T PULL IT OUT...DON'T PULL IT OUT...DON'T PULL IT OUT...ETC

Wednesday, August 16, 2017

THE IN-BETWEEN...

As I was getting closer to my cancer 5th anniversary & was asked by a nurse in my doctor's office  how I had felt when I looked back at that first diagnosis.  I told her it was the most peaceful and calm period I could remember. Well...she looked at me with this shocked look like I had lost all my marbles and said  "You do know that makes NO sense, it's just plain crazy" "You Are just crazy...you know that..right?" 

Regardless of all that...it was my truth and just the way it was...and in some convoluted way...the one thing I am looking forward again this time.

As expected...I've started to slow down & spend some quiet time thinking.  It really is the only time allow myself the luxury to just sit, guilt free & let my mind be totally peaceful.  My normal brain, and I use that phrase broadly, never really shuts down...not only is there ALWAYS a song floating around during all conscious moments (sometimes crossing over in my dreams at night too) but I am always feeling guilty about all the things I am not getting done.  I have a MONSTER size expectations for myself so I suffer from the "To Do" list in my mind (and usually written down) being WAYYYYY longer then this old body has the chance of ever getting done in a single day.  I have even tried to just do the top "key" things and leave the rest for tomorrow....ya...that was an epic fail.  All it manages to do is make my next day list twice as long cause by then I have a entire new list already started in my head...so there is no way to ever recover from crushing defeat like that. You have to understand that all this guilt and list nonsense is totally a monster of my own making.  After all the years of illness we have had to deal almost daily, VoR understands and accepts me and my on again off again limitations, much better then I do.  He gets that all hours of each day are definitely NOT created equal, and that it truly is a krap shoot as to how well I am gonna feel on any part of any given day...I, on the other hand, have a hard time grasping the concept that I just can't do it all...when I want, what I want.  Sometimes thinking and believing are just not part of reality and I am obviously a VERY slow learner.

 I am grateful that I am forced to allow myself the chance to sit and just breath. I find I question why everyone is in such a hurry and not present in the moments that are so precious and numbered.  Is all that stuff really important?  Is it vital in the "big picture"? What eternal worth does it have for me? What's important, is what kind of mark we leave on all those around us...how we treated, loved, served & shared a part of who we are with them.

I find myself pulled back from a lot of the usual "stuff" that distracts and stresses me. I spend time watching and feeling, noticing all that goes on around me, to simply reflect on the path I am walking and take the time to really see what changes and corrections I need/want to make now and when this is all over.  No one stands still, so it is definitely a time for me me to see just how much drifting my life has done since the last time I took a minute to check myself.  I love this part of the journey for me...it has become such a precious time for me.  I so profoundly feel the comfort, peace & love of the Saviour encircling me in every waking moment.  I know He is always there offering the same support to me...I just get too busy to notice and that is the biggest tragedy  

Friday, August 11, 2017

CHEMO #2

Well...that was a shocker!!  Not only was I NOT nauseated with the last cocktail...but I feel better in these last 7 days then I have in the last 2 months.  VoR & I were talking and came up with a theory...maybe I don't feel as good as I usually do but this is soooo much better, that I just think I feel as good as I do and if you compared it to my real normal....I am not really feeling all that good. Are you confused yet???  Re-read it...you will get what I am trying to say. ;)

What ever the reason...I have gotten a ton of the "little krap" done that really serves no purpose other then to make the stay, in my new "livingroom/office/ bedroom more comfortable.  I have had a chance to put everything exactly where I want it and gathered all the stuff from upstairs, in my real office & bedroom, so that when this chemo business really kicks in I won't have to climb the stairs to get it.  I don't remember a lot & it's probably a good thing that I can't remember just how yucky it was.  It's kinda like labor...between babies...it was a beautiful experience...once your pregnant, it comes rushing back in a flood of emotions, weight gain & pain...lots of pain (remember that needle phobia...ya, no epidural..BIG NEEDLE). Seriously...how nuts is that??  I went thru all 3 labors with no pain meds, just to avoid any needles.  At the time it made sense but looking back..what the heck!?!? One good thing came of that...well, 3 actually, but besides them...I was privileged to be a birth coach for a few amazing women & together we had some really cool labor experiences along with some really cute babies....Thanks ladies for allowing me to be part of your journey.

Somehow I seemed to spend a lot of time on the phone & online too..who knew there were so many details to get done.  Between postponing doctors appointments and cancelling VaCa (vacation) reservations & booking flights for the Empress of Awesomeness & Random Wisdom to come home to visit, I spent a butt load of time on the phone. I think the first thought thru my mind when the oncologist said we needed to start chemo was the "KRAP, that means we don't get to go away in October" It's funny really, but we just love getting away and exploring New England & it's magnificent coast. This time we were headed to New Hampshire to just see the beautiful Fall leaves...there is always next year...sigh!!!  On the other hand, I am soooo EXCITED that the GIRLS ARE COMING HOME!!!!  It is so great to be together with the kids, even just one family at a time. You can just imagine the silliness that is a constant when we are all together...which BTW...isn't near often enough (again I just can't say it enough...feeling really good). I was just as excited when Pragmatically Speaking was home...then this infection exploded on to the scene.  Even so...I was so glad to see him (even if the first couple of days are a bit hazy) and to have him here so he could be here for VoR. He was a great distraction & a reason so that VoR wouldn't sit in my room and worry. So within a couple of months they have all been home. I'm not really thrilled at the reason, but we'll take the positive and be grateful. When it's all said and done what I have mostly been doing this week is all those little irritating jobs and calls that VoR just hates to deal with...so if I can help him out just a smudge, that works for me, big time



This little reprieve from being so sick has done wonders for my feeling of well being and control. I don't think I can put into words just how HUGE this blessing has been to me but it sure qualifies as a Tender Mercy. I don't know how I would have dealt with these next 18 wks (end of November) feeling as awful as I did. My heart so goes out to all those that live with that reality with every single day...they are the strongest people I know.

Tuesday, August 8, 2017

**HERE WE GO AGAIN**...

Here I sit at 9am waiting for what is bound to be, WAY LESS A TON OF FUN, the beginning of Chemo for the second time in 5 yrs.  It's really surreal to be sitting here again surrounded by, for the most part, the same nurses...going over the same "pre-chemo" info and checks.  They were about as excited to see me again as I was to see them...for real!! Lots of "sorry" faces & "we remember you...we are going to watch you close cause you never want to bother us...not this time"....they are a great bunch of nurses trying to make, what we all know is gonna suck big time, a little more human and about you. 

I didn't think I was nervous...you know the "been there, done that" vibe but I spent my night waking up about every 15 minute  and only sleeping for about an hour or two total. I finally had enough and got up at 5:30am with VoR as he was heading out to the gym for another session with BaM his trainer..Now, don't go all whacky pants thinking he is trying to "regain his youth" or some mid-life crisis...it is all about just getting health....but I can sure appreciate those new/old arms, which I might add are nothing to sneeze at...(Wow...there is an old phrase on my mom's that hasn't surfaced in years).  Such dedication he has, either a session with BaM or swimming laps (about 1400 meters) so either way, his day starts REALLY EARLY.  I used to be the "sleep 27hr/day" (yes...I know there are only 24)...no amount of sleep was enough or too much...sigh. Those day are LONG gone and I usually get about 4hrs, 5 if I am really lucky. I'm still a night owl, so up late...now up early....the quintessential Night Owl burning the candle at both ends hot enough to take start a fire....but I once again digress, which, it seems, is beginning to be a habit.

I know that this is just the beginning cause when my oncologist warned, "you're not gonna like me much".  On the upside this particular cocktail shouldn't be as nauseating as the last ones.  If I am gonna get sick it will show itself between 12-24 hrs and only last a couple of days and only with the first chemo of each cycle...so only 5 more treatments to worry about...sadly, we know, with me, nothing ever goes as they expect (2%)...look at the last 2 months....not really a stellar record to fall back on.  BUT (and yes it is a big one) instead of the the one shot to boost my white blood cells like last time, because of this lousy infection, she has decided that the best plan is the one that involves...HOLD THE PHONE...13 SHOTS OVER 21 DAYS!!!! That same 13 shots are repeated after chemo for each and every cycle...ummm WHAT?!?!?!?!  You are more then welcome to do the math, but for this SERIOUS needle phoeb...the first one was too many. All I know is that as I set up my "chemo calendar" (just to keep everything together in one spot for easy reference) there were an enormous amount of little green "shot dots" over the next 3 months.  I know that this needle thing is totally irrational but I just can't help it.  I can't have an IV in my arm without really fighting the urge to pull it out...I'm okay if I can't see it, so we cover it up with gauze anytime I have one. Not only that...I cringe even just seeing one...live, on TV, in a movie... does NOT matter...makes every muscle in my body fire and throws my stomach right into my throat.  Trust me I'm not some weak sauce, I love the next action movie as much as the next guy and doesn't bother me at all...they pull out a single syringe and I lose it. Like I said, I know it is totally irrational and soooo dumb but, it's just the way I'm wired...but before you ask, PICC lines don't bother me at all...even weirder right???  I guess maybe it's because you never see a needle associated with getting one and somewhere in my silliness, I realize it will save me from a plethora of future needles. Whatever the reason, after all the antibiotics, blood work, ER trips and hospital stays, I am VERY thankful for Petunia...my ever faithful PICC line and our ongoing "attachment"

So when it comes right down to it I have very low expectations...it WILL suck at some point, but my optimism & outlook are equally high.  Only time will tell and whatever the journey, I am again soooo thankful for these last 7 days of feeling really good after 58 days of not.

Sunday, August 6, 2017

PRE-CHEMO....again

After getting mostly thru the infection mess...I met with my Oncologist & lets just leave it at she was NOT happy to see me back!!! Over the course of treatment the last time we developed a unique & perfect for me relationship.  Now I understand that she probably has this same sort great thing with other patients...but sometimes it's nice to think it's just me.  To be fair...she is in a heavy specialty but it is really great now that the "all business" slips off and we talk like humans who care about each other as people. Trust me there are too many of them, sometimes voluntarily, trapped in that "I am the Doctor" "show no emotion....it's a case not a person"...WAY too seriously.  I have been very blessed to have my primary care team (in and out of cancer) not like that at all....we are people caring about each other.  For that reason alone...well, at the top of the list, that I will always call this beautiful city home.  With ALL my medical specialties in place...you just don't walk away from that and have to start all over. Anyway....let me just say...she ROCKS!!! 

After all this summer has thrown at me, the idea of maybe being pukey sick & bald doesn't really sound like a fun way to end my summer...DON'T GET ME WRONG...like this EVER does...but less now after already bring bruised and battered and not behind me yet.  I know though, that I am closely watched from above & all I ever need to do if it ever gets overwhelming is to call out and my Saviour is right there holding me even tighter, reassuring me that we got this & together we are unstoppable.  The most amazing thing to me is how blessed I am even further by my hero & Rock...VoR!!! I could not put one foot in front of the other if not for him & his undying love & support.  He is the most selfless & generous man with whatever I need...emotionally, spiritually and physically (let's be honest the house isn't cleaning itself right now). He reminds me that we both signed up for "this"...in sickness & health business...even not knowing all those decades ago what exactly "this" was gonna be...but always knowing we had each other's backs forever. He works tirelessly to make my life easier in every aspect so I really feel most days that FOR ME...it's a pretty Mary Poppins life I live and it all is thanks to him.  I can go about my life without much pressure, except for what I put on myself...working on projects that I love & that move me.  He really is a Saint 'cause trust me....there a more then a few days a year that I am much closer to "Wella the Witch" then Etta May...mostly caused by my myself & nothing to do with him....just got to be honest.  Seriously ladies....he IRONS HIS OWN SHIRTS...crazy talk I know....but that's not all he does. If he sees something he can jump in and do for me he just does....like laundry most Saturday's for as long as I can remember...WHAT!?!?!?  Again to be truthful...I think it all started so he could justify, to himself, the amount of time he really wanted to watch some sports game or other. I didn't have a problem with him just "chillaxing" watching tv but he, the man that always has to be accomplishing some thing...just couldn't do it.  Another HUGE blessing in my life, with years of illness, was watching him jump to basically raise 3 small children (great ones might I add) who have grown into AMAZING adults & even better parents. He makes my life so much easier, fuller, more focused, joyful, funny & Christ centered.  For that and a TON more reasons...I can not tell you just how much I love this man!!! 
 HE IS MY HEART!!! 
xoxo 

Tuesday, August 1, 2017

Hospital Stay #2....dang drain!!!

The Demise of the DRAIN...FINALLY...

Before they got me up to my room the Cardiology resident came in to see me...for the record he will be an amazing doctor!!!  He came in and said they were 99.7% sure what my heart problem was all about.  He asked me some interesting and random questions then told me there was a mild medication I could start on but that we could work all the way up to an "up thru your vein" procedure (ablation) if it got that bad.  In my head I am thinking....another risk of infection....not if I can help it so the medication sounded really good to me.  He wanted to consult with his boss and would be back.  He came back an hour later with his boss who told me the same thing but just to be on the safe side...considering all the krap I was already dealing with they wanted to go one step higher to their boss...so they would be back in a while.  I got moved up to my room and sadly it was kind of like "old home week" cause everyone remembered me and kept coming in to say "HI"....they are such a great bunch of nurses and housekeeping staff.  ID (infectious disease) came and checked in on my swelling and Physio came in to say HI and then Cardio came back....with the "BIG/BUCK STOPS HERE" Heart Institute doctor.  He just cracked me up soooo bad.....he is sooooo my kind of doctor.  He starts by saying it was NOT a heart attack that in fact, my heart is beautiful and in excellent condition & that this event from last night, though a pain in the butt & freaky for everyone around me, would actually do no harm. I was just born with an extra circuit in my heart that randomly fires and throws my heart out of rhythm.  He said it is sooo rare to actually catch one of these that they were ecstatic I had 3hrs worth of data for them, which also meant the diagnosis was really easy.  It would not trigger a heart attack or a stroke or even make me pass out  and it would do no damage to my heart...it literally was just gonna be a pain in the butt to deal with.  He said that the fact that I had been having mini (seconds long) episodes my whole life...if it was him, he would have the ablation and be done with them.  He said Cardiologist are "general contractors" the "electricians" do the ablations so after all this infection stuff was done he would refer me off to them.  I told my big sister about it and unbeknownst to me...my niece has the exact same condition and has already done her ablation...so talking to her made me feel a WHOLE lot better!!!  Thanks Miss J....you inspire me!!! So all in all...a very fortuitous time for my drain to not work so I was at the hospital....there are no coincidences in my book...this is the 2nd time in 50+ days that if one thing hadn't been done we wouldn't have found the other more important issue.  It becomes more evident to me every single day that WE DO NOT RUN THIS SHOW!!!  The Lord very carefully watches over us and moves us in and out of things that in the end, are for our own growth and learning.....all according to His plan....but the guardian angels (cause it would take more then one for sure) must be getting just pooped by now!!!  LOL!!!

Now back to the blasted drain.....it never really worked.  Before I left the hospital they did another ultrasound to check its location in the abscess and discovered that the majority of fluid was gone but that it was so tangled with cob webbed/ honeycombed little pockets that a drain would have a hard time actually being effective anyway.  I did discover a new spot where it had come thru my chest wall cause it couldn't drain but it has closed itself back up soon after I went home.  3 days later I had a follow up with my surgeon and she just took it out.   Here we are a week later and  it still leaks a bit but is managed by a small dressing.  My lymphatic massage therapist is stopping by tonight to  do some manual draining...I cam hardly wait!!!  I feel soooo much better just having the drain gone...it is way better on my psyche after all we were hooked at the chest for 5 weeks!!!!  Now it is just me and Petunia PICC and as it turns out we are gonna be LONG TIME friends by the time this is all over.

I think I have successfully gotten you all caught up in what will be THE Summer to remember....or forget.  Thank heaven for great medical care and some fantastic doctors and equally awesome nurses that have tried to make this as easy as possible for me.....
Miss M...you are my HERO...
I can never thank you enough for all you have done & continue to do for me...
YOU TRULY ROCK!!!

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


Saturday, June 24, 2017


Who would have ever guessed that coming out the other side of my surgery adventure included dumping blinders on and a cargo net over my head to find my way out....OYE!!!  
YOU JUST CAN'T MAKE THIS STUFF UP?!?!?!

STAY TUNED...

Wednesday, June 14, 2017

I MADE IT THRU TO THE OTHER SIDE...

Let me tell you....it was not as easy as it sounded!!!  I have acquired a few more HUGE scars and I am VERY sore and really quite limited in my movements.  I guess I forgot from the first time just how debilitating this can be for a while....but in truth...when I did the first side, I still had full use of the other arm with no restrictions.  This time they took off the left over boob but they also opened up the old side to remove scar tissue and add some fat to where the skin was stuck to the chest wall (ribs) as a result of radiation.  You really are mostly helpless when neither arm can do too much & bending down or reaching up are mostly impossible.  I have been VERY blessed this time by having VoR in my life supporting everything I do and is the first to jump in to help me if I need anything & dear friends who have dropped everything to comejumped in and "babysat" me while VoR had some work commitments he couldn't get out of....they are my angels for sure...THANKS A MILLION!!! 💗

Now for the rest of the story....cause you know my 2% curse is gonna cause something whacky....this time was no different.  I had an amazing surgical team who have phoned and checked up on me  for the first few days....above and beyond (you ROCK Dr. K). My surgery itself went without a hitch...for the most part...but Dr K did inform me 3 days post off that I was VERY difficult to intubate"!!!...which means, they tried 3 times and then finally had to go fibre optic with the glide scope.  He suggested that I note that on my medical history and in my allergy list so IF I ever have to do something again in the future they will be aware of it.  Now this little nugget of info would have been good to have remembered before I coughed up blood on Sat and freaked out the Home Care Nurse...& ended up in emergency.  It was because of my super irritated throat, which had not been helped by my 36hrs of deep coughing, which I had been instructed to do post op.  You see....I am  naturally a shallow breather and so when I came out of surgery and my O2 saturation levels were 88-93% (ideal is  between 98-100%)... they weren't very happy & Dr K. (with a wicked sense of humour  that I loved) informed me that "it would just suck if after all this for you to fall asleep and drop dead cause you forgot to breath"  I had to agree with him. When they got to 94% they decided not to keep me overnight to monitor things IF I promise to sleep in a chair, get up every hour and walk, cough & deep breathe for 10 minutes till at least the next morning. Ya....that was a ton of fun.  Poor VoR....he was just exhausted but got me up like clockwork all night long... I on the other hand wasn't sleeping anyway...I read an entire book  that night. He has had to step in and do everything thru this process cause if it isn't at eye level...I can't reach up or down to get it.  I have run him ragged with all the things I have needed....never a word of complaint...helping me in and out of chairs, filling my water bottle and even bathroom runs at 3am.  VoR....you are AMAZING!!! 💖

They had done a nerve block on my back again so I stayed frozen for just over 72 hrs.  I was feeling great...even managed to get 6000 steps in (thanks to those hourly strolls) my first 18hrs at home. Then the block wore off....SIGH!!! Up to this point I was only taking regular Tylenol but when that freezing came out....WOWZER!!!  I kept having to remind myself that I had wanted this for 5 yrs & it would be over soon!!!  We hit the good stuff and continue to do so but at longer intervals...so we moving forward.  Now..the majority of my pain, especially in the beginning wasn't my incision at all but from all my huge mess of broken down skin from the "girdle" compression wrap they put on you.  It just dug in left my skin rubbed raw and blistered. But being the good patient I stuck with it because  according to the surgical residents discharge paper form the hospital, this binding had to stay on for 21 day....I almost lost my mind!!...but I can handle pain really well so I was sure I could just struggle thru it like I do with other pain...WRONG!!!  By Friday (9 days post-op) my body hit that wall where the pain is just too great to cope with it....for me to get to that "hot mess" point you know it was HORRID!!! I just began to shake and sob about midnight and couldn't stop.  VoR was so supportive....gently hugging me as I sobbed and then he noticed that the home care nurse, after checking my dressings, had actually put it on over an inch tighter then it had been before.  So we readjusted it and agreed to call the surgeon's office in the morning....I knew I couldn't do 1 more day of this.  She wasn't in so they had me go see her partner at the clinic. As I was leaving the house her nurse called back and said she had felt too bad she had called my surgeon directly to let her know.  The surgeon was shocked because I was only supposed to have worn it for 48 HOURS post-op!!!  "RIP THAT SUCKER OFF"!!! UMMMMM....WHAT?!?!?!?!  I was too beyond mad at that resident who wrote the instructions wrong to even see straight....can you imagine if I hadn't hit that wall!!!!! 😡. As much as I would have rather not hit it....it's good thing I did....or I would still be wearing that awful torture wrap!! Tender mercies are sometimes really well disguised & come in all different way...but they do still come!!    
TO BE CONTINUED...

Monday, June 12, 2017

So...when I started this journey in 2012, I started drafting them in journals so I could work off the rough edges before I posted them....never would I have guessed that 5 yrs later I have just begun my 3rd journal.  I never really thought I had anything to say or that I would be any good at the whole writing thing.  I thought I would jot a couple of things down, maybe, and then it would just die a slow and quiet death....who would want to waste any time reading my babbling....seriously!?!?!?  Not once did I expect to be still dealing with side effects and issues of this little troll...but alas....here we are...19 days away from the 5th anniversary of my diagnosis & still getting surprised by stuff.  I admit I wasn't too faithful in posting much after the chaos of treatment was over....I settled into a quieter, stress managed existence & so there just wasn't much to talk about at all.  I was getting tired of just simply documenting all the little hiccups and "left fields" that kept showing up so I just withdrew and quietly continued to step ever forward.  BUT THAT HAS ALL CHANGED!!!

In January of this year I came across a project that really spoke to me so...I took a big step and got majorly involved with it.  It is called "the *Blinging it Forward* project."  It supplies unique and original bracelets & key chains to women who have taken refuge in a battered women shelter.  The goal is to help them remember they are beautiful, brave and not ever alone.  It just really touched me and so I jumped on board and began to learn how I could help.  What I thought would be a casual little hobby has turned out to be working with them almost daily...and I LOVE IT!!  It has taken over and refocused my life in a really great way, toward this special group of women.  If you are interested to find out all about them or how you can help (they collect used jewelry)....here is their website. blingingitforward.com. that has all the links for the these other places too.They also have a Facebook page (The Blinging it Forward project) and FB group (*Bling*...The Group) & an Etsy shop (BlingingitForwardCo)

Okay...so back to this final (I hope) step of this girl's cancer story...I have been waiting 5 years to FINALLY have this last boob removed....not for any risk factor....but because I wanted it GONE!!  I know some of you would have a really tough time with this and probably not be where I am....we women tend to be deeply attached to the boob=womanhood thinking....I am NOT one of those... My attachment to my boobs ended the day they tried to kill me!!!  I also have been blessed with the most amazing Hubby who, right from the start said to me..."you alive sooo out weighs having boobs!!  I support you in whatever you feel you want to do".  AMAZING right!!!! What's more, is that he has stood by his word and loves me and tells me I'm beautiful daily.  I could have done NONE of this without VoR at my side...he has had my back for over 35 yrs...he is my rock and my anchor through everything in my life.  I LOVE YOU!!!!

I have spent the last 5 years as a loud and proud UNIBOOBER.  With nerve & radiation damage on the original side I have been unable to wear a bra with a dummy boob in it....I did once for Random Wisdom's wedding but that really was the rare time I did.  It was painful and just not me but gravity being what it is...with each passing year my remaining boob lost hope and began to fall further & further south until it really became that ball in the end of a tennis sock. (I know that's an image you will all carry for a day or two.  To quote one hunky man "you're welcome".....yup...I too have watched Moana.). My plan had been to do the reconstruction thing with the end result of tummy tuck & perky boobs but once again what I wanted and reality slammed head first into each other....reality won.  So for a few vitally important reasons that option was taken from me.  1) I am diabetic 2) my blood vessels are not strong enough to support that kind of tissue transfer 3) it's a 14 hr surgery with a LONG recovery time.  They did look at the old site and see if they could even do implants (I DID NOT WANT) and discovered that the tissue damage from the radiation was just too bad...but they could go in and do some removal of scar tissue and clean it up a bit...that was just fine with me since I had been telling them since day one...."just whack the sucker off". At this point I am just soooo beyond tired of it just hanging there making clothes fit weird, trying to disguise it, it effects my swimming and just generally just weighing my psyche down....it is past time to move on.  So on June 1st I finally got my wish and became the UNBOOBER & I feel GREAT about it....
...and so the story continues....

Thursday, June 1, 2017

---UNDER THE KNIFE WE GO AGAIN---


Here I sit the night before surgery trying to get something posted before I am out of commission for a few days/weeks.  I am going in for my final mastectomy, what I hope is the final step in my healing,  this morning and I couldn't be more thrilled!!!  It has been a long 5 years waiting for this day....I will check in with you on the other side. Soooo very much to share with you...I can't wait!!!

-Etta May-