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


Monday, November 20, 2017

Guilt & Exhaustion

I am really feeling awful guilt and very remiss for my lack of posts during this chemo journey.  But if I were to be completely honest....there really hasn't been much to "write home about".  This has been soooo much better then the last chemo 5 yrs ago I sometimes (in total jest) find myself wondering if they are even giving me real chemo and not just a placebo. In my total 6 cycles I spent the first 3 or 4 feeling really good...enough to continue my 1.5 mile walks every morning (at a really good pace) & cooking dinner every night...much to VoR's annoyance.  He just feels like I should be resting all the time and let him take care of things like cleaning, laundry, cooking & running errands...again, if we are being honest...he does all those things way better then me anyway.  I was thinking it's the least I could do to help him out cause he really is doing EVERYTHING ELSE!!  He is ALWAYS taking such great care of me, being that selfless steady rock for me.....TRULY MY HERO!!! xoxoxo. He even managed to not be annoyed by spending his birthday sitting thru a chemo treatment and my all day nap...not that there was anything I could do about either of those things.  I am such an airhead....I didn't even get him a card....epic fail.

(No truer words were ever spoken....just saying!)

My biggest adjustment with this chemo is the complete mind numbing exhaustion that just came out of no where, literally as soon as my infusion was finished.  I got off the bed and suddenly could hardly put one foot in front of the other and was totally winded.  I came home and started sleeping for the most part of the next two days....that has been the "norm" every time since then. I seriously mean "mind numbing"...I can't focus on reading anything of substance, always having to back track a couple of pages to remind myself where I left off.  We all know that I am a HUGE movie buff and to sit down and watch a full one is only really successful with those cheesy Hallmark Christmas ones...anything with a plot you need to follow....I just can't keep my attention or stay focused thru it. All I know is that this problem better be TEMPORARY....cause this would completely suck!!  I have loaded a bunch of mindless & ridiculous games onto my iPad & phone.  Let's just leave it at well...I have plethora of Bingo, Gin Rummy, Candy Crush type games & more then a few jigsaw puzzles taking up quite a bit of real estate on both devices.  I have been slowly working on some simple jewelry items (key chains & lanyards) for the "Blinging it Forward Project"...so that is saving me from feeling totally useless.  The biggest challenge (besides the design process) is that by the time I get upstairs to actually work on stuff, I need to rest and catch my breath and then recognizing when I have reached my limit and make my way back downstairs for a rest/nap.  It has been a real distraction and focus for me.  I had ongoing projects the first time too and it really made that chemo better.  I really believe that you need to lose yourself in doing things for others to get past huge challenges in life.  Reaching beyond yourself and seeing the needs of others gives much needed peace to your soul...and gets you thru this gong show that is CANCER & CHEMO

Saturday, September 23, 2017

WOW!!!!  It's been over a month & I feel like lots has happened & nothing has happened all at the same time.  I just completed part 2 of Chemo #3 & I'm still feeling really good.  Maybe I should qualify that a smidge....I am not nauseated 70% of the time & rarely feel horrible & let's be honest...that's all that really matters when you're going thru this mine field.  I have however started feeling some effects from my daily shots (post chemo to build my blood)...large joint and muscle pain...mine has focused in on my right hip joint.  It's pretty miserable and has put the brakes on my 1.5 mile morning walks.....that really sucks!!!  The 3rd round of chemo this week was just the same old routine...until the other shoe dropped.  IT wasn't a horrible drop...I just got smacked in the face with the fatigue!!!  I could hardly put one foot in front of the other by the time that treatment was over and it hasn't gotten much better...so I am suspecting that this is the new norm.  I will gladly take this any day over nausea and puking....just saying.  I am finding that I am feeling well enough to be distracted doing other things and not taking the time to rest when I am tired or to just sit and ponder and that is a great loss to me.  I am just not feeling bad enough to justify just sitting around without my mind going into over-drive on of all the things I could/should be doing....much to VoR's annoyance and frustration.  I am trying but I guess this time the "feeling good" is definitely a doubled edge sword.

I have also had worse & more frequent headaches.  The weather has been a contributing factor since it has been all over the map with crazy systems and pressures....If you doubt my word for it...just ask anyone from Texas, Florida, Louisiana or the Rocky Mountains...they will set you straight.  On this weather topic for a second...Harvey hit us a little close to home as my brother and his ailing wife live just outside of Houston so we were keeping pretty close eye on what was happening there too. My heart goes out to all the other victims of the other storms and fires that went on during this time too.  All this crazy weather & natural disasters are right out of control but lucky for us we were created as a resilient people.  We will learn the lessons, compassion for others, band together to help those affected, turn to the Lord, and grow stronger for the experiences.  We need to go into this recovery with nothing but love in our hearts, looking for opportunities to switch our focus and look for the needs of others not what we think we are entitled to...anger and frustration will rear their ugly heads at times...we must look beyond that knee-jerk reaction of anger and see the hurting soul inside and find a way to help and lift it.  If we look to Christ as the example and try to emulate Him in our daily interactions think how truly blessed we would all be. IN every disaster that happens there is a "hive" of these yellow hand print shirts that quietly show up without the fanfair and news coverage.  They come in ready to work and help the hurting thru physical and emotional support and loving hands to labor with loving hearts to show they care....plus a tear-filled hug or two just for good measure....but ask any victim from where they have served and they will tell you...."they made all the difference".  Far beyond the hours and hours of selfless labor they provide...they send a 
stillness to the hearts of those they help and are a true shining example of Christ's love for each of us.



Now back to my little corner of the world...One day rolls uninterrupted or changed from the day before, for the most part. Then you throw in a doctor’s appointment or a test...& on those days you get to take a “Road Trip!!!  It's pretty sad when trip to the doctor is a much anticipated outing…OYE!!  

I did have a week of excitement as Random Wisdom and her precious little family came to visit. We had a lot of fun and it was great to watch the working mind of a 2 yr old againl….fascinating really.  They actually were impacted by “Harvey” and got rescheduled and rerouted and they arrived 2 days early….I AM NOT COMPLAINING!!!  VoR took some time off work and did all the “touristy” stuff with them and got the Poutine, Timbits & Beaver Tails that are mandatory staples when any of the children visit….and not just once…numerous trips each visit.  IT WAS A BLAST!!!  

I have gotten myself involved with a local project called “the *Blinging* it Forward Project.  They collect used jewelry from women all over the country and then take it all apart and rebuild it into new pieces (bracelets, earrings & key chains) for women in battered women shelters in the city.  I don’t profess to have a ton of talent when it comes to this kind of stuff but I wanted to jump in and do my part….giving back too….I spend a few hours every day working on whatever tasks need to be done for them while I try my hand at some designing.  It is a lot of fun….keeps me occupied & they really appreciate my help. Then you throw in the  gratitude from the women on the receiving end when they get their new stuff, and it's a win win!!! You will probably hear me talk about it a lot in the future.  It is such a GREAT & rewarding project!!!  Thanks to them for letting me be involved and for allowing me to do  my small part.



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.