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 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!!!