Three weeks post-surgery.   I think I prepared myself for this to be difficult, but I expected it to be a bit easier in a lot of ways too.  I thought the pain would be more tolerable and the emotion would be the challenge – I got that backwards.  My mood and disposition can vary greatly day to day.  I am trying my best to be pleasant and overall I think all things considered I’m doing pretty well. But let’s face it, I’m going to be irritable.  I am ok with the aesthetic changes and the fears about just the word CANCER.  I am not hopeless, depressed, or anxious...well, maybe occasionally.  Pain-wise however, I am in a good amount of pervasive discomfort. I thought I had a pretty high pain threshold, and I still think I do, but my patience is being tried.  I can deal with it, but I occasionally break down.

Recently my skin has become excruciatingly sensitive.  You know how bad sunburn makes just breeze, clothing or touch painful?  Well, that’s how I can best describe it, but without the sunburn.  Apparently it’s hyper sensitivity likely due to nerve damage and repair, but it’s becoming pretty annoying.  I also notice that drinking cold liquids feels weird; I can feel the cold sensation on the inside of my chest.  I have read others’ blogs and this seems pretty common.  Many report that the sensitivity is due to the cauterization during surgery – in essence you have a large internal burn.  Makes sense I guess!  My doc upped my dose of Gabapentin which is to address the nerve issue so hope that helps. I’m not usually a wimp, but this gets old!

On a positive note - I got my last drains out on Tuesday! What a relief not to have to carry around those creepy, fluid- filled grenades. I cut back on the pain meds so I can resume operating heavy machinery and thinking clearly.  I got out and about this week which was nice. Went to a class, volunteered at a Frostburg event, and even got some sunshine outside with the kids. Felt great to put on some make-up and socialize! Tired of being sedentary and ready get myself in gear again.

One more update which is really a non-update.  I spoke to my doc after “tumor review” and she basically had no more info for me.  One thing that was strange was that the result of my HER2 was reported as negative (good) on my initial pathology, however surgical pathology was different so they will test that for a third time. Not sure why it would change – human error perhaps??   My initial biopsy was tested near New Year’s Day – maybe the tech was “compromised”.  The significance of the difference is that a positive HER2 would result in a different medication regimen.  AND Oncotype DX is still not back.  So still no closer to an answer about chemo. Bummer. That’s really the last piece I’m wondering about. She assures me she’ll let me know as soon as those tests are back. The Onco DX is not tested in the hospital lab but is sent away to California. She said to plan for another week or two. Ugh.  I have been passed along to the medical oncologist and physical therapist so I hope to meet with them both soon. I will continue to wait for all info with which they will make final decision/recommendations and of course, will post updates when I have some!

Love to All,

D

Labs Back!

Got a call from Dr. Bellavance today.  Labs are back and all of her preliminary "naked eye" predictions were confirmed.  Lymph nodes are clear.  Margins are clear - meaning all tissue surrounding the cancer are free of cells.  This means no radiation!!   Prayers, candles, well wishes and positive vibes really do work!

My case will be reviewed at  "tumor review" next Tuesday.  Sounds fun... I envision bagels, danish, coffee, and tumor talk; a cancer klatch if you will.  The cons of my case still remain that my tumor was over 1 cm, I am at a relatively young age for diagnosis, and I have a family history of breast cancer. The results of the Oncotype DX are still a big piece of the puzzle  - that might just be the determining factor to tip the scales one way or the other.  These results are, of course, still not back.  She hopes to have them by Tuesday.  So, radiation out... chemo still a maybe.  Half yay?

I got two drains out on Tuesday and will likely get the others out next Tuesday when the nurse practitioner is available here in Hagerstown without having to go to Baltimore to see the plastic surgeon; another positive. Now THAT was a weird feeling!  She snipped the suture that held the tube in place and gave a huge yank --like you would to start a lawn mower and voila - tubing out!  It kind of wrapped over and around in a circle shape- I swear there must have been 18 inches in there! Rustin retched a little.

Hopefully Dr. Bellavance will call after tumor review, but I am scheduled to meet again with her in person next Fri. 2/21 for my surgical follow-up and recommendations.

Still living the life, but hanging in the slow lane. Had two snow days this week which work in my favor as far as accruing the number of days required for student teaching, but leave me little time to enjoy a peaceful recovery. Studying for my Praxis test which I will take tomorrow.  (state requirement for teaching certification)  I scheduled it months ago and changing the date would have put me too far out time wise. Taking that bull by the horns and plan to nail it. I can live off of the pain meds and am able to focus for the most part so I am going in with confidence. That seems to be decent strategy for me!  I still can't drive so Rustin will have to occupy his time and wait some more for me.  He has been extreeeemely patient!

Well, Happy Valentine's Day! I hope many of you have heard one or more "Happy ValenTIMES Day" wishes - one of my personal favorites.  I will enjoy some chocolate and a well deserved glass of wine.

I can't say it enough -  thank you to so many for your generosity, and thoughtfulness. We have received so many fantastic meals, lovely gifts, and gestures of kindness.
Sending love from me and the Riss family back out to all of you who take time to read :)  I'll post again when I get some more news.

drains...ouch.

One week post-surgery…  Ow.  The worst part at this point has been these damn drains.  I know I’m not the first to complain about them;  it seems to be a recurrent theme and it’s no wonder!  They are getting pretty irritating.  The tubes and holes in my skin have been there for over a week now and while they are taped down, they do tend to move and just feel weird.  My next appointment is on Tuesday so I hope to get at least two of the four out. I have to measure the output daily.  They are slowing down so that’s a good sign.  I am still bruised and sore from whatever was involved with the removal of tissue while under anesthesia.  I can only imagine it wasn’t a gentle process. Still no word on toxicology.  That was supposed to be about two weeks so I have a little time yet to wait. Yay. More of that virtuous patience that I possess. Overall, the pain has been pretty bearable, but the physical and endurance limitations have been frustrating.  I am much more tired than I expected to be or have the tolerance for. I am not a napper, but when my body shuts down I have had to adjust and succumb to the not so subtle message my body sends me.  I have decent range of motion. I can do my own hair and get dressed which is actually quite exciting.  I am stubbornly independent.  As a result I tend to get tired and sore. You don’t realize just how much you use your chest and core muscles just for everyday activities like just readjusting in a chair or pulling up your pants. After too much exertion my chest muscles tend to seize up and breathing becomes a bit painful just because of the chest expansion.  So I have to remind myself to take it slow.  I feel OK for a good while then I pay later.  All complaints aside, I really do feel like I am fortunate to be recovering well. 

Mental state….epiphanies at his point? As someone who tries to find a lesson in the midst of many of life’s curveballs, processing this one has been interesting as my perspective has evolved over the years.  What I’ve surmised:  most people are genuinely concerned for the welfare of others which is heartwarming.  Despite my often cynical view of people; each has his own set of life experiences, but when it comes down to brass tacks, people care.  People are curious but are afraid to ask questions or offend; and curiosity can be a blessing and a curse.  People fear the unknown and the potential of threats that are beyond their control. Fear can immobilize or inspire. If I can be an open book, a source of information, or inspiration, I may have begun to establish a purpose.

I have read others’ stories and blogs and have heard that tragedy for many has in some way been a “gift”.  I respectfully call BS.  A gift is a pretty, thoughtful keepsake.  The lessons learned as a result of tragedy or challenge may be viewed as eye opening, or life altering, but the tragedy itself – no, not a gift.  That’s crap.  If I could give it back I would, and if I could re-gift it, I wouldn't.  I will learn from this and hopefully others will too.  I can reframe it and consider my “situation” a learning experience and chapter title, it’s not a tragedy.  This too shall have a resolution but I have yet to determine the moral of my story.  

So… feeling pretty good for now.  I can’t stress enough how insanely grateful we are for the wonderful messages and gestures of kindness and support – from family, close friends, acquaintances, colleagues and even complete strangers who relate to my situation.  I look forward to paying it forward and I hope others will consider more gestures of kindness too.  Maybe that’s the simple lesson and easiest way to start. Pay it forward and be kind.  Sounds easy enough. 

So here goes my first attempt at blogging post-surgery.  Where to begin?  I might as well just go through chronologically.

1/29 Off to Baltimore for the blue dye injection.  OK, nobody warned me about this!! Holy Hell – this was the most excruciating part!  A fast and furious injection of what felt like burning liquid injected dead center (if you know what I mean).  No anesthesia allowed. The burning sensation lasted a few minutes and then dissipated; I about broke some digits on the tech’s hand.

Went back to the hotel and had a lovely meal (crab cakes...yum) and tried my best to chill.  I was really ready, and at peace by this point so I actually slept pretty well and woke up ready.  Oh and a little Xanax to take the edge off seemed like it was justified.

1/30  Got a shower, put on some mascara, called the kids and headed out for 6:30 am check in at the hospital.  I wasn’t going to include this next bit, but hey – it’s me I gotta share.  Sometimes I tend to umm... blurt out thoughts... just sometimes.  So we’re in the elevator all fresh- faced, bags in hand.  A guy joins us, likely on his way down for the continental breakfast… just making some elevator small talk.  “So, where you folks headed today?”  (Oh no you dit-int – you walked in to this one)  I look at Rustin, thought for just a second, and in a Tourette’s moment I answer, “Headed to the hospital – double mastectomy day!”  … awkward silence….  “How about you?”  I ask cheerfully.  “Got a meeting in town, just down from Damascus.”  *DING*  “Well, Good luck”.  I about peed on the way to the car. 

Check in went quick. I was first on the books.  Bombarded by every team. Wrist tags on, IVs in, anesthesia team explanation - check, plastic surgery authorization-check, final visit with surgeon,  antiseptic wipe down. Gown on, OPEN IN BACK!  Wheeled off to pre-op parking.  Get my epidural/nerve block and relaxation drugs. Said goodbyes to Rustin and off to la la land. Surgery started at about 10:30 and I was back in recovery by about 2:30.  Surgeon informed  Rustin that Lymph nodes were negative! 

Woke up in recovery feeling pretty good. Groggy, nauseous but in very little pain. That Epi/nerve block was amazing!! No feeling whatsoever.  Nurses checking my vitals, BP was low, but I seemed to be doing ok. . It’s a teaching hospital so several residents, many who were still in their twenties checked in and took countless reports.

The big reveal. I’m kind of afraid to look. Surprisingly, I had no bandages or gauze.  Just under the gown was the remaining skin. I thought I would be shocked, but I really wasn’t. It ain’t pretty, but they’re  gone; it’s gone.  The tissue expanders are bizarre. It looks like some strange body art. Imagine a small deflated ball under the skin. I can see and feel the lumps as they are very close to the surface of the skin.  Small vertical incisions secured with internal sutures and outside surgical glue – it’s really not as bad as I expected.  I have two drains on each side which feels little weird – fish tank tubing hanging out of my armpits.

Moved to a private room at  about 2 am.  This was much more comfortable.  More vitals and pain-management cocktails.  Got my epidural removed and pain was much more evident. That was an actual nerve block and without it I felt a huge increase in pain.  Note to self – stay ahead of the pain.  So, spent the day loading up on pain meds, drinking my meals, and using the big  girl potty. Then OK’d for discharge by about 6 pm.  Loaded with home care instructions and we were  on our way.  Ahhh. Home.

Greeted at home by my weepy, timid girls, and my mom.  Gentle hugs and a big  sigh of relief. They baked  a pink cake, and had balloons and a sign…so good to be home! 

First night sleeping at home was a bi%*#.  Thank goodness for the recliner. Finding the right combo of meds and staying on top of the pain will be key.  I actually feel pretty good.  Surprisingly better than I thought I’d be.  I’m up and about, but very tired, and of course sore. Taking thinks slow and moving very little. I can type :) Being waited on hand and foot by my very patient family.  Bless their hearts. 

I have read all FB comments and see the “likes” and I can’t explain how heartwarming it is to know I have so many saying prayers and wishing our family well.  Apparently it has worked so far!

Final labs can take up to two weeks and that will determine final after care.  Will share that update and protocol as soon as we know.  Still have a long road ahead, but I’ll get there.  Love to everyone!