WHAT???What – another change???

Hi everyone!!!!  I’ve missed you!!!!

I want to share with you a very important update about my surgery that I just found out about.  But, before I get to that, I want to give you an update on how things have been going with my Phase “B” and “C” chemo treatments, with the Taxol (B), Herceptin (C), and Perjeta (C).  

This is definitely a “two trips to the potty” read – but well worth it in the end!  😉


FUN SIDE EFFECTS
First things first:  things are looking pretty good.   The new phases’ side effects have been very polite by providing me non-visible side effects this time around. I’m able to hide 100% of the things that are not feeling well or working properly, other than my hair growth.  And for that, I’ve become very well-adapted, and proud, to always sport an uncovered, “fuzzy-in-patches”, mostly bald, “Shutter Island” head. 😉  And thank goodness it works for me – ‘cause Williamsburg temperatures have already peaked out in the hundreds.

As for those side effects that you won’t see…they’re not the sexiest things to talk about, for sure.  But I’ve gotten quite used to talking about them since I have to run down the list every week with my chemo nurse ( I love my Tamara).  So – if you don’t mind squinching your eyes and reading cautiously, I’m happy to share.  Of course, if you’re over 45, most of this is probably “old hat” for you, whereas the youngins may not be ready to believe that often times unglamorous things start to happen to even the healthiest of us once you hit 40. 

Anyway –  I’ll get the yucky one done first.  I started my weekly Phase “B” and triweekly “C” chemo treatments 12 weeks ago.  And, for 12 straight weeks I have had, what we in the south call, “the runs”.      Yep.  12 weeks.  So I’ve been pretty much home-bound this entire time, only daring to venture out when extremely necessary, and with extra clothes and flushable wipes within hands reach (I learned the hard way – twice – poor Jacob).  This, by far, has been the most debilitating issue I’ve had so far.  But (“butt” *giggle*), yesterday ended the tougher “B” phase of treatment, and the docs have assured me the continuing Phase “C” is not harsh on the digestive system, and this issue should see its way back to normal in no time. 

The next most debilitating side effect has been something called “peripheral neuropathy”.  Remember when you were younger (okay – some of us crazy kids did this), and you wrapped a string around the end of your finger real tight?  (Maybe dental floss?)  Do you remember how purple your fingertip got – and more specifically, how it swelled up and seriously felt like it was going to explode from all the pressure?  It was also tingly AND numb at the SAME TIME???  Well – – – THAT’S what my feet and ankles feel like 100% of the time – and they get worse with any walking or activity. My fingers and hands have it too, just not nearly as bad.  And it’s kinda funny sometimes – I’ll wake up in the middle of the night and think, “Oh crap, I must be laying funny, my foot is falling asleep, let me straighten out my leg………….oh.  Nevermind.  It’s straight.  Dangit.”   :Þ  Good thing is, with lots of time spent in my past, both working & playing on boats, and also having competed in cheerleading and gymnastics,  my top-notch “sealegs” and excellent balance serve great purpose here.  They help me get around looking like I’m not TOO awfully drunk.  😀   And the doc says there’s a good chance that some or all of this will go away eventually, now that I’ve quit the hard meds.  But, no guarantees.  So, if I end up with a bit of a Captain Jack Sparrow gait one day – – just love me even more, ‘kay?  

The other side effects are bad, but not as debilitating, and most will also eventually go away now that the hard meds are behind me.  Severe fatigue; bloody noses all day and night; I cut and bruise VERY easily and take forEVER to heal; fatiguefatiguefatiguefatigue; my once-bionic-eyesight has become so poor that I have to hold things out at an arms length to remotely focus on them.  Doc says that chemo can bring on cataracts very quickly to those who are predisposed to them, so I’ll be getting that checked out pretty soon. My fingernails and toenails have started to come off – but are just a little bit separated at this point – so I’m hoping they’ll hold on.   Hey – did I mention FATIGUE?  

And then there’s the mental effects that come with having Stage III breast cancer.  The battle of always wanting to think POSITIVE and just force yourself to KNOW in your heart that only the very best will happen to you…when the reality is that you have so much time alone, and so much time to think, and you’re SMART & EXPERIENCED enough to know about mortality and reality and how some things are just not meant to be.  So, you want to take this perfect time to prepare your psyche for death – to document important info – and to work on leaving a legacy of whatever kind you can.  And your ONE access line to the world, to information, to a social life, is the computer.  Facebook and the Internet – which nearly kill you on their own because you inevitably ALWAYS accidentally see stuff that’s not helpful right now.  Like information regarding the percentages of EARLY stage cancer patients who end up CANCER FREE (YAY), only to find out two years later that the cancer spread to their vital organs, and they now have Stage 4 Metastatic cancer for which they’ll receive treatment for-ev-er.  (Side note – I’ve had the privilege to meet many women in this very boat – and they’re MOST inspiring because they are THE MOST positive, beautiful, outgoing women who are all living life MUCH more purposefully than anyone I’ve ever met!  BIG Kudos and daily prayers to them!!!)  Of course, I’m only conveying parts of my experience right now, as this is the only way to let you know what’s going on with me.  And I promise I’m getting there – slowly but surely.)   I’m also getting a bit kerried-away….so let me move on to the IMPORTANT news…..

MAJOR UPDATE ON SURGERY
Sooooooo – remember my March Blog Post when I wrote about changes to my plan and I noted that, during my chemo teaching:  “Apparently, ten ears were NOT enough to get the dates and numbers straight.”  So, um, yeah.  For this story, I defer to that again.  

Two weeks ago, I started a conversation with my doc:  “I thought this would be a good time to start researching information for my surgery.  Even though it’s not until next year, I just want to have time to ask all my questions – or more importantly – find out WHAT questions to ask.” 

He tilted his head, looked at me a little confused, and replied:

“You’re surgery’s not next year it’s this August.” 

***cricket cricket cricket***   

***more crickets***   

I continued to smile and said very simply, “No, no, Doctor <<<Oncologist-with-umpteen-years-of-college-and-umpteen-plus-more-years-of-experience>>>, I’m sure you have that wrong.  My surgery is after my chemo ends, which is April 14 of next year.  Just take a look in my chart.”  He replied that when they said the surgery comes after the chemo ends, they meant after the debilitating chemo, which ended for me yesterday.  So, yes, my ten ears got that one all wrong, too.  And then the inevitable happened, once again:

 I lost it. 

As in – straight up HYPERventilating, tears STREAMING down every facet of my face, and snot POURING out of my nose and onto my perfectly poised arm-sleeve.  (P.S.  You lose your nose hair during chemo too, so there’s NO WAY to keep that goopy crap in.)  Of course, those of you who know me well, know that I continued to smile through my dramatic spectacle, placing my reassuring hand on my doctor’s and nurses’ arms, and repeated a million and a half times, “…I’m sorry, it’s okay, I’m okay, it’s going to be fine, I’m sorry…”

Wow…I know you’re as glad as I am that I started to research “so early”!!!! LOL!!!  Regardless, I see how easily this miscommunication occurred, and I still love, love, love my team of doctors and nurses, and I’m actually glad to get this part of the process over and done with.  With this behind me I can FINALLY get back into the career world – find a job – and start making a difference again!!! (Both personally and professionally!!!!)  And, I won’t have to worry about taking time off next year RIGHT WHEN I get all settled into my responsibilities and routine.  Ya know? I won’t have to be “that token sick lady”, and I’m very, VERY good with that!  ***Another side note:   Not to mention – it will be nice to have an income again!!!!!!  There is NO WAY IN THE WORLD I could have made it through this far without all of the support I’ve gotten from my family, friends, strangers, the United Way of Greater Williamsburg, and all of you who have so graciously done fundraisers and donated, both directly and through the “Kerris Fight” gofundme website!!!  I am SO humble and SO grateful.  ♥  Thank you all from the bottom of my warm-fuzzy-heart!!!!  WE’VE ALMOST MADE IT TO THE OTHER SIDE OF THIS!!!!***

SURGERY DETAILS
Here’s the skinny:  

Surgery is July 29, 2015. 

If all goes as planned, I will be in the hospital for one overnight.  I will have a Left-Side Total Mastectomy, and a Right-Side Modified Radical Mastectomy.  Because of the “type” of success that’s occurred with the Neoadjuvant chemo, my surgeon is going to forego the Sentinel Node Biopsy, and go ahead and remove all of the lymph nodes on my right side.  In (very) layman’s terms, even though there was success at shrinking the overall measurable mass of the tumors, and there was success at having the cancer cells decrease quite a bit in density, the overall amount of change was nominal compared to the size of the tumors themselves. (Invasive Ductile Carcinoma  IDC  is not historically a cancer where you’ll get a mass to completely disappear, or to even shrink much at all, so this is not unexpected).  There’s a lot more to it than just this, but in summary, there’s a lot left to chance if we don’t take ALL of the lymph nodes.  We could very well find out after-the-fact that there were cancer cells left behind in an area that could continue to pass cancer cells along to my vital organs.  This approach is radical, I know, but, I feel extremely safe and happy with my surgeon, and with the decision we’ve made together.  It will create many life-long limitations for me going forward (look up “lymphedema”), such as having to wear a compression sleeve on my right arm, lifting restrictions, flying restrictions, exercise restrictions, and possibly SCUBA restrictions (which would break my heart!!!  ).  But – the alternative is a scary and stressful option for me.  So I’m definitely good with all of this. ✿  

Also, I have decided I will not be getting reconstruction at this time (gasp, I know), as I want to make it through the six weeks of radiation with the most ideal conditions possible.  When I think of having tissue expanders in the way of the radiation beams, along with continued healing from surgery and the possibilities of infection and rejection – I’m good with just “plain ol’ me” for this part of the plan.  I have plenty of time to consider and pursue reconstruction down the road.  Trust me – I’ve had plenty of years of “more than plenty”.  😉  Before all’s said and done, I’m sure I’ll get around to a blog post highlighting “the amazing things I can now do sans boobies”  with item number ONE on the list being a toss-up between “see my feet” and “go jogging“!!!

THE IMPORTANCE OF MARGINS
Although I am losing my breasts and will have to deal with the mental & physical issues that are SURE to follow – that is all pretty much blocked from my view right now. All of my focus is balled up tight inside waiting in anticipation for results of what I consider the REAL key to this surgery:  

Finding out about my “margins”. 

Margins refer to all of the tissue that immediately surrounds the tumors  and in ideal situations, is all cancer-free tissue.  When the surgeon removes the breasts and lymph nodes, there will (hopefully) be a large amount of MARGIN tissue.  This entire collection of tissue is sent to a lab, where the margins are evaluated and identified as being either negative, positive, or close.  

  • Negative margins mean no cancer cells were detected in the margin – no further surgery is needed.  (Ideal.)  
  • Positive margins mean cancer cells were detected in the margin – further surgery is usually necessary. (Least ideal.)
  • Close margins mean that there were cancer cells very close to the outer edge of the margin, and further surgery will be decided upon by the medical team.  

Of course, I’m really routing for negative margins, but after seeing a recent, third, ultrasound and hearing the word “vague” over and over from the ultrasound tech, and receiving only two dimensional measurements – as well as considering the way the cancer cells sort of “scattered” – I would not be surprised if I have close margins after all.  I have heard wondrous stories about my surgeon though – and one friend who used him even said to me, “he got in there and scraped and scraped as much as he possibly could.”  And I’m ALL ABOUT that.   (Thank you, D.B.!!!)

LET’S DO THIS THING
Showtime is in 26 days, and I’ve got some cardio that I have to get in before I go under anesthesia and a knife.  I’ve only ever had surgery when I was in relatively good shape, so this one has me heading out to the sidewalk and the pool just as often as my side effects will let me now.  I know you’ll all be cheering from afar.  I’ll be cheering and smiling right backacha.  Believe me – I feel the love. 

I’ll be checking in with you more often now, as I’ll have much more data to report, as well as some non-treatment related insights that I’ve picked up along this crazy journey, or even some goofy stories of fun things I’ve witnessed.  Maybe I’ll be brave enough to fit in a more cerebral selection as well, but then, I’m just a simple girl from the west side of Jacksonville, so keep in mind, cerebral is relative.  Regardless, I hope you’ll be entertained.  I know I will be.  😉

LOVE YOU and MISS YOU ALL DEARLY!!!!!

xoxo K

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