Arlene’s Story

Site created on January 20, 2020

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. 

Arlene was told in November of 2019 something looked "funny" on her 3D mammogram. It was recommended a spot new checked out. A procedure was undertaken where this TINY SPOT wasn't easily found and tissue was taken and tested. It came back "inconclusive" as not enough tissue was taken... What was taken was sent to Stanford for further evaluation where it was deemed to be cancer--immediately before Christmas break. 

So appointments were made with a top notch team and options were to be generated. "You will be cured of this cancer with any of the three options: lumpectomy, mastectomy or double mastectomy. Your choice to make and none of them is wrong."

Given her family history a double mastectomy reduced future issues the best (90% reduction of risk) with the potential benefit of not needing radiation or chemotherapy. This is the course decided upon.

Surgery is set for Tuesday January 21, 2020. A for week recovery is hoped for. Updates will be given from surgery day forward.

Thanks for your thoughts, prayers, and support during this trying period of time.

Newest Update

Journal entry by Roy Cossairt

Written by Arlene . . .
Good Morning and Happy Sunday!    It has been a little over 3 months since my surgery and longer than that since I’ve posted!    I am doing well.  

Because I haven’t posted in so long I’m not sure who knows what so I will review the medical part a bit.  

My surgery- bilateral mastectomy- in January went well and my prognosis is excellent.   The pathology taken during surgery was deemed “no cancer remaining, no node involvement”.  Because my cancer was estrogen positive and invasive type, there is still a 1-10% chance of distance recurrence, even when the nodes are negative, so I’m on hormone blocking therapy for the foreseeable future and that is going pretty ok too.    So, here is the weird part.   It’s that 1-10% chance thing.   I don’t like talking about it (hence the long delay in writing).    It defies logic that such a low number would trip me up, especially because I lived under “40% chance of having breast cancer” for over a decade.    That’s what I was told over a decade ago, and at that time it was suggested that I have the very surgery I have now done.   At that time, I told the docs to shove it; it seemed so way over the top crazy.   And doing that kind of surgery at that time of my life- with a very young and very needy Ace, and a still young lady named Aurora- it would have been a disaster really.  So, I compromised and went on Tamoxiphen- hormone blocking therapy- about 5 years ago.    But I couldn’t handle the side effects, so we compromised again and I did the drug half strength.   And I went about my life.   Now fast forward and I built myself an estrogen positive cancer- the very cancer Taxomiphen is supposed to stop.   But I was only taking half the recommended dose, hmmmmm.   

My cancer was an extremely slow growing cancer.   We joked that is was a cancer with special needs.   The surgeon said she had never seen a growth rate that low.   So we all are assuming that it was the tamoxiphen that was keeping it at bay.    And therefore we will continue down that road- full strength this time- until I can switch to the AI class of drugs.     After the pathology came back, the surgeon said “Well it looks like they got the whole thing in the biopsy and so our work here is completely prophylactic- preventative.  That’s so great!”   Except there are days when it doesn’t feel great at all.   That pesky 1-10%.    I don’t what to do or think about that number.   What I’ve been doing is being quite busy in my own life.   

Initial recovery in Late January to mid- February felt busy in a weird way but the reality was:  what time is it, when can I take pain meds next, should we go for a walk now or in an hour, and what’s on Netflix.  Repeat.   My wonderful sister came for two weeks and helped me.   I really think I would have died of some kind of complication if she hadn’t been there- she watched out for everything.  

Late Feb to mid March was physical therapy and slowly going back to work.       Here is the part I did not expect would be so striking.   We all know that when you do not use your muscles, they begin to atrophy in a matter of days.   This meant by week 3 of no lifting, pulling, pushing I barely had any pec muscles left at all.   And yes they were a bit injured from the surgery too.   Exactly what that kind of atrophy feels like is mind-blowing.  There was a point where I couldn’t eat properly with my right hand because I couldn’t operate a fork very well, and a big water glass was too heavy to lift without spilling.    The first day I went back to work in late February I was walking (slowly) down the hall to make a copy of a small stack of papers.   Those papers got sooooo heavy I had to use both hands to carry them.   My boss was watching me and he had a scared look on his face.   The stapler was tricky and typing was not fun at all (also a reason I haven’t posted).   It was shocking really. 

So, I’ve been doing physical therapy twice a week since week 3, and slowly increasing my work hours.    I can type now, I mowed the lawn, and I can carry small bags of groceries.   My pecs are still really weak relative to where I was, and they get quite sore really easily.   Yes nerve damage is a thing too.   But, I’m able to function and work and move about.    I had worked one full week at my regular full schedule and then we all were sent home because of COVID.   

Ok so let me get this straight.  This year, I’ve escaped in the night from a blazing dishwasher, I’ve lived in a hotel for a month, I’ve watched Roy fall apart from a surgery and helped him get healed up, I’ve been diagnosed with cancer, and had major surgery with a difficult recovery.  And now you want me to live through a pandemic???   Whatever…bring it on.  

I’m really sort of annoyed at this point.    But I also feel a tiny bit of guilt about this pandemic.   You see, I actually asked God to be sent home.   Somewhere in late December, when the diagnosis was known but there wasn’t a plan yet I said “Please god make the world stop so I can get off”.   Oh dear, I didn’t really think he would, you know STOP THE WORLD.   But here it is.   I had also lamented to God many times that I needed to spend more time working with Ace.    Well that is now happening is spades.   And I had also pondered to God about whether I needed a different kind of job.   Now, I’m learning all kinds of things about working remotely.  Come fall I will likely be back in a school building, but we all talk about how education will never be the same.   Interesting opportunities there perhaps?    Even the cancer was an answer to my whisper that I was burning out and needed a break.   But this pandemic?   Such a decisive move on his part.   Hmmmmmm could it be that God did all this just for little old me?    I mean, I know he COULD.  But would he do all this to everyone else just to give me a little change of pace?   Doubtful.   So, I’m left with the conclusion that you all must have needed something only this situation could bring also.     

An article I read recently called it “the gift of the GREAT PAUSE”.    For better or worse, we are all firmly planted in the present.   I want to acknowledge that for some, this present is not pleasant at all, it is downright awful and scary.    But I do know that God can work his way into that place also. And perhaps that is my answer to the “1-10%” problem.   Just stay planted in the here and try not to worry.  And take meds at full strength, haha.   We are doing well at home for the most part.   Ace, because he doesn’t have enough to do, and no friends to go see, has taken it upon himself to redecorate the living room with pantry, garage, and at times few refrigerator goods.  He is very meticulous and careful, but there are problems with this plan.  More about that later, because it is kinda funny.  Or at least we are choosing to find it humorous.    That’s really the worst thing that is going on right now.    

Its about time for a walk, so I will sign off.   Have a happy and present day!

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