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February 14, 2011

LCIS and Cancer - This Time Was Different Part 3 of 5

No. 3
The months between each monitoring appointment with the oncologist, passed quickly and I was scheduled for my 3rd, follow-up mammogram.  I can't recall exactly how long it was between the tests, as the original biopsy reports are somewhere in an unpacked box since our recent move.  But, the whole experience that concerns the 3 surgeries and biopsies, would span about a 2 year period.
SQUISH.. sit in the dressing room wrapped in a thin, cotton gown - wait for the technician to tell me I could go or (more likely) that they needed another picture.  I heard footsteps approaching and pushed the curtain to one side.  “Sorry, but the radiologist has been delayed at the hospital and she wants you to wait for her to read the film.  Sorry.”  


More Of The Same
So, in the end it was the same result. The radiologist saw something small but suspicious and this time it was near my left axilla (armpit) not in my breast, which meant a lymph node must be involved.  The surgeon wanted to remove it for biopsy so more appointments were made and kept.  A few weeks later the third biopsy was performed and this time was no better than the last. Why couldn’t it  have been like the first one, where I felt so taken care of?  Nothing terrible happened.  I wasn’t mis-treated.  It just wasn’t a comforting experience nor was it personal - the health care system was changing; hospitals were short staffed and nurses were over-worked. Cut backs meant no extras, including time spent with patients.  In and out.  Perfunctory.  See your doctor in a week to have the stitches removed.
Something Is Wrong
I went home from the hospital completely despondent (inside) but hiding it.  I did not feel at all hopeful.  I felt strange from the first night home - just off somehow.  Nothing I could name though.  Terry and I decided to go to a movie the next night and made the long drive to the city, arriving early.  While we waited in the car, reading newspapers, I suddenly began to feel chilled and a little nauseous.  I felt chilled to the bone and just couldn’t 
stop shivering. We returned home, as I knew there was no way I’d be able to sit through a movie like that.  
I called my mother and she didn’t connect it to the surgery.  I went to my bed and curled up under a heating pad and duvet for most of the night, waking the next morning feeling only slightly better, but profoundly sadder somehow.  I didn’t know why.  My mother was arriving for a visit a few days later, so I gave her my bedroom and took the pull-out sofa downstairs - it just made things a little easier for everyone and gave her some privacy.  
Each day I would open my eyes and think, “What is wrong with me?”  I felt so blue and a bit weaker each day.  I wasn’t in pain although my underarm felt a little warm and stiff when I moved it, but I was doing everything I had been told to do. The dressing was dry so what was wrong?  I went through the routine motions of making up the bed, putting on coffee, feeding the cats, getting breakfast, lunch and dinner and whatever else I had the energy for.  I was the caretaker in the family, so I wasn’t letting anyone do anything for me.  I was fine. 
My follow-up appointment was scheduled for the end of this difficult week, to remove the stitches.  As soon as I opened my eyes the morning of my appointment I found myself thinking that I didn’t care if I lived any longer but for some reason this thought didn't alarm me, it's just the way I felt.  Mom kept puzzling over me, sensing that something was going on.  I wasn’t being at all helpful in assuring her I was okay, I didn't have the energy for it.  My physical and emotional health seemed to be declining along with my appetite. That alone should have been a warning because I love my groceries.  
No Wonder..
When the doctor unwrapped the dressing and lifted my arm to check the wound, he winced.  “What?”  I asked, feeling a little tenderness where he was palpating the flesh around the wound.  I couldn’t see it from my angle, but I could see his face.  
‘You have a very bad infection.  Can you meet me in the emergency room at the hospital in an hour?”  It wasn’t a hypothetical question.  
“What? Yes, but why, what’s the urgency?”  I responded.  
“I need to drain the wound and get you on antibiotics immediately.”
I told Terry and mom what the doctor had said.  Terry became alarmed and my mother immediately blamed herself.  
“I should have known.  When you described your symptoms to me on the phone that second night after your surgery, I should have recognized the shivering as a symptom of infection.  And, then seeing how ‘down’ and listless you were becoming, I should have put it together - but you were so active, I kept pushing those feelings aside.”  Mom had worked as a nurses aide at an Ontario, Psychiatric Hospital for years and would have been familiar with such symptoms.  Also, I’d kept telling them that I was fine.  I reassured them that it would be taken care of shortly and no one was to blame. 
We had some time to kill so we drove to an office supply store to pick up a few things we needed.  I was pretty sure I could manage that.  But, as I slowly wandered down the aisles between mom and Terry for some support, I suddenly felt very nauseous and knew I was about to have a bout of diarrhea.  I quickly found the washroom making it with no time to spare. We went straight to the hospital.     
Terry filled out forms while I was taken to an examination room and made ready for the doctor.  He immediately ordered an antibiotic intravenous and had me moved into a treatment room to attend to the wound while the IV was inserted.  He removed the dressings and proceeded to drain the wound into a measuring cup, several times.  Yikes...
Really?  C'mon!!
I was feeling exhausted and the doctor looked very pensive as he worked on me.  I turned my attention to the nurse who was preparing my arm for the intravenous.  I warned her that my veins are hard to find (I’m a red head and this seems to be a common trait for 'gingers').  It always took a few attempts to raise a vein and this time was no exception.  First try "Ouch."  Second try "Owww!  Geez."  The third time she was actually distracted as she looked away from the needle site while chatting to a nearby colleague.  The doctor had left the room by this time and when the needle hit a nerve, I screamed so loudly he came running into the room to see what had happened.  

My whole body was vibrating and I was yelling at her to get it out of my arm and at him to make her get away from me - there was no way she was getting a fourth try.  I'm normally a very accommodating person but enough was enough.  The doctor was completely sympathetic and requested the on-duty anesthesiologist to do the job.  I was in luck.  This was the great doctor who looked after me during the first biopsy. He had such a light and caring touch.  I barely felt the needle slide in on his first attempt.  
“Thank you.” I told him, through grateful tears.  My hero..

The antibiotics began to flow through my veins via the intravenous.  The doctor stood over me, concern written all over his face.  I smiled up at him but instead of smiling back at me he bit his lip.  
"I think you should stay overnight so we can monitor your temperature and the wound will need to be drained again." 
I agreed, welcoming the rest.  Now the healing could begin.
The old hospital was in transition while a new facility was being built and the floor they took me to was practically deserted.  Mom and Terry settled me into a private room and left to go and collect the things I'd be needing for my short stay.  During the night, my vitals were monitored, the wound was drained and re-dressed once more before the restorative, morning light broke through the window of my room.  

I was allowed to leave the next afternoon but was informed that the doctor had ordered ‘home care’ to ensure the wound was properly cleaned and dressed daily for the next 2 weeks.  Terry learned how to sterilize the equipment and change the dressing so we were able to cut back on the nurses visits.  One time, I asked him what the site looked like and he said it was pretty grim.. kind of a black hole.  But, under all the careful attention, it soon began to close and heal.
 When I went to the surgeons office for my follow up appointment, he informed me that I’d actually had a very serious STAPH infection, adding that had they not caught it in time I could have died.  What?  The nurses at the hospital had been shocked that it happened in this particular surgeons OR. He had a reputation for being meticulousness and this was his first post-surgery infection. 
Good News ~ About Time Too
The depression lifted as I continued to heal and that alone was a huge relief.  Even more helpful was the biopsy report. There was no indication of LCIS or any of the other pre-cancers in the tissue specimen.  The report described the lesion as 2 lymph nodes that had somehow fused together.  Yippeee....
If memory serves, there was just one more follow-up appointment and mammogram.  Both were clear.  Finally, the oncologist and my family doctor concurred that close monitoring was no longer necessary and I could resume annual mammograms and check ups along with self breast-exams.

I’d experienced a lot of anxiety over the past 2 years along with the effects of multiple surgeries and general anesthetic.  I was ready to look at preventative alternatives.  From the earlier research I’d done (referring specifically to The Breast Book (1992) by Dr. Susan Love) I recalled how she’d written about her patients who reached the point where they just wanted the breasts removed rather than continue to face the unknown and the day when they would find that damning lump that screams, “This is it. You’ve got cancer!”  I was really beginning to see why women were choosing that option and although I had shared their experience through 3 biopsies and a STAPH infection, it still wasn’t the right option for me.  But, what else could I do besides keeping up the annual check ups?  Would I be truly comfortable with that alone?
Breast Reduction?  NOT Mastectomy
In the name of knowing that I'd done all I could to avoid breast cancer, I knew I should at least explore the possibility of a breast reduction - not a mastectomy.  I reasoned that if I reduced the amount of breast tissue substantially, I’d reduce the risk of getting breast cancer.  This seemed logical and something I might be willing to do, but I needed to find the right surgeon for this undertaking.  I asked my doctor for referrals to experienced, breast surgeons.  He gave me three names and I interviewed them over the next few months.  

Two of the doctors seemed acceptable but not right for me.  The third doctor's behavior actually scared the crap out of me.  I obviously wasn’t ready for this step.  The timing was not right - my body, head and heart told me so - and I knew how important it was to listen.  
I felt I’d done all I could to this point, and it would be another 10 years before I would revisit the subject ... 
Return here for part 4 of 5 ~ LCIS and Cancer...

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