I Am Linda

Lady in Waiting ---

Only half of my results of the oncotype test came back this week so it will be another week before I have an opportunity to consider and discuss my options.  This is teaching me patience but it is also causing anxiety in friends and family who are anxiously waiting some news. 

In some ways I feel I've been given a reprieve.  I get another good week to take care of things that I deem important.  The challenge for me has been to determine what is important.  Doing paperwork and making sure my 'life is in order'?  Sounds comforting but it is boring work and I prefer not be be bored.

Or how about finishing the paint jobs I've started in two different rooms?  I've discovered that these are not home improvement projects but creative projects and I haven't been feeling very creative lately and I don't really care that the place is torn up and a mess.  In the grand scheme of things it just doesn't seem that important.

I've been excited about getting exercise - I've always liked to remain active.  But today my lawn mower decided not to start.  When I finally get it back from the shop (that is , BTW, backed up and can't promise it before the weekend) I'll be baling hay!  No huffing and puffing for me today. 

My dog Kayla seems to have hurt her paw somehow so she's limping around which will put a kink in my walking plans in the morning.  Hey - breast cancer wasn't in my plans either and I've managed to work around that ---- I guess I'll figure things out :-).

And I guess I'll just wait until next week to learn where I go from here.  I can look on the bright side - this gives me more time to get my history caught up.  Still, I'm a bit bummed. 

The big day...

We were up at 6:00am on May 12th.  Everything seemed surreal as I went about my normal routine knowing that when I came back later that day I would be less than comfortable.  Actually, I didn't know I was coming home that day. 

Part of the procedure was to do a sentinel node biopsy.  I would be injected with a radioactive material at the site of the tumor and that material would travel to the lymph nodes.  The first one it hits is called the sentiel node.  That one would be removed and examined for evidence of cancer cells.  The theory goes that any break-away cells would have to go there first, before traveling to the rest of the body.  If the node was postive for cancer, more of them would be removed necessitating an overnight stay in the hospital.  If the sentinel node was negative, I'd be bandaged up and headed home that afternoon.  Just in case, I had packed an overnight back, as suggested, and left it in the car.

I still remember that morning as if it were yesterday. We arrived at Baptist South at 7:30am. I signed in and was called back shortly thereafter.  As I changed, Jerry and I joked with one another.  It was to be a big morning.  First, poked with an IV.  Then it was down to radiology where a needle would be placed in each breast at the site of the tumors to act as a guide for Dr. Edwards.  Following that would be more mamograms to be sure the needles were in the correct position.  Then back to radiology to be injected with the radioactive 'stuff'.  Then over to nuclear medicine for more 'pictures' then back upstairs to be prepped for surgery. While in nuclear medicine I remember hearing Dr. Edwards being called over the PA system.  I also remember everything being expedited because Dr. Edwards was 'ready'.  Apparently he has a great deal of 'pull'. I was sent to the head of the line everywhere I went :-).

I remember being in pain - I remember the radiologist calling me a 'trooper' as he recounted to the technologist what I had been through over the past few weeks.  I also remember him telling Jerry he would be allowed to watch these procedures.  I also remember him giving instructions about what to do if Jerry felt he was going to pass out :-). "I'll be busy, sir.  I won't be able to help you."  I couldn't tell if he was serious or saying this a bit tongue in cheek.

I remember the mamography nurse had a pink breast cancer awareness bracelet. I remember her noticing that my gown was wet from the betadine solution and I remember her taking the time to get me a dry one.  And I remember the radiology tech holding my hand when she saw me writhe when the needles were being inserted.  Sadly, I don't remember their names.  But I will never forget those simple gestures that meant so much.  Nurses truly are angels of mercy. 

As I was being prepped, the anethesiologist came in to say hello (and get his paperwork signed ;-)), the nurses started pumping me full of stuff to keep me from vomiting or worse, and Dr. Edwards came in to assure me that the worst was over.  At that point I looked forward to general anesthesia and having the pain go away. 

The rest is a blur - Jerry was with me most of the way to the OR.  On the way there I remember a little, elderly lady lying alone in a bed in the hallway. As I was rolled by I kept looking at her and she mouthed to me, "good luck."  I remember feeling sad for her because she was all alone.

At some point Jerry was moved to the waiting room and I was on my own.  In the operating room I remember cold.  I started to shiver and a nurse went to get me another blanket as I was moved from my bed to the operating table.  I never saw Dr. Valasquez, the anestesiologiest, though I know he was there because I heard him say, "I'm going to start your IV now."  That is all.  I never saw Dr. Edwards.  I don't even remember where I  woke up. I remember Jerry was there.  I remember shivering. I remember Jerry saying that the nodes were negative --- to use the words Dr. Edwards' said to him, "there wasn't a damned thing in there."  Cool. 

The nurses could never get my temperature to register.  But I wanted to get out of there as quickly as I could so I slowly got off the table to get dressed, started to wobble, and then decided it would be a good idea to sit for a few minutes.  Everyone agreed.

It was a sunny afternoon when we drove home. We were greeted by the neightbors telling us that they found the front door open and Strider (our little chihuahua) in the front yard.  While I was in the OR, Jerry ran home to let the dogs out and apparenlty, in his haste to make it back so he wouldn't miss the Dr., the door didn't get pulled tight.  He doesn't even remember using the front door!  I guess we were both experiencing a good deal of anxiety that day.

The history keeps coming -- Part 8

At Dr. Edwards office the following morning, Jerry and I sat quietly.  I sat on the examining table with my arms crossed, slumped over.  I didn't have the strength to sit up straight and I felt I had been so violated for so long that I wanted to protect myself. 

Jerry kept notes while Dr. Edwards began to share the news.  He talked about things that I didn't yet understand - receptor positive, Her2 neu negative....The only thing I did understand was IDC - invasive ductal carcinoma....again.

He began to discuss my options.  "This tumor is an excellent candidate for breast conserving surgery (i.e. lumpectomy and radiation) as the other.  The fact that this has now shown up on both sides doesn't portend anything worse, but it might indicate a fertile field that might raise the probability of having to go through this again, at some point, in the future.  It certainly doesn't mean this will happen. We just don't know."  He went on to mention mastectomy and my options --- leave the chest wall flat or  postpone surgery and meet with a plastic surgeon to discuss this first.  The reason for doing this type of radical surgery would be to prevent me from having to ride this roller coaster again.

I looked right at him and said, " I can't make that decision right now."  He gently mentioned my body language and posture and suggested that these tumors are considered independent and perhaps we should continue with the breast conserving therapy option.  If something happens in the future we can readdress and reconsider other options then.   I agreed. 

It was all too much for me to deal with and I was not about to agree to something that seemed incredibly radical - not at a time when I was feeling so overwhelmed with the choices and the specter of future that lay before me.  It was bad enough that I would look in the mirror at scars the rest of my days, but what I wanted to avoid was looking at myself and being constantly reminded of my 'condition'.  Scars would fade over time.  Body parts that have been removed, no matter how artfully reconstructed, would still be gone.

We left --- and said we'd see him in the morning, Friday, May 12th ---- for surgery.

More History - Part 7

This is a big week for me because it is the week when I should learn the results of my OncoType test which will determine, in part, the decisions that are made for the balance of my treatment.  So, before we move on to the next phase I'd better get my postings caught up!

Where was I?  Oh, yes.  It was May 8th and I had just gotten more bad news.   On May 9th I showed up at Baptist's Breast Center for what was to be another round of mamograms and ultrasounds, and ultimately another ultrasound core biopsy. 

Everything seemed faster than usual this day.  I was quickly ushered back to the mamogram area and when that was done there was vitually no waiting for an ultrasound table.  The radiology tech somewhat remembered me and when we started talking again it all came back to her.  After all, I had spent over 3 hours with her one day just a few weeks ago and at that time we talked about movies, dogs, the weather, teaching, school, husbands, boyfriends.  It was as if I had suddenly run into an old friend. 

When the radiologist came into the room I did a double take on her name and promptly said, " Hey, you're my neighbor."  Sure enough, Kathryn Pearson and her husband, John Peyton just moved into a beautiful home they build a few doors down.  This was a fortuitious meeting because she was also the MD who interpreted the MRI results and her field of specialization had been in this area. 

Once she took a look at the ultrasound screen she immediately decided the area should be biopsied. Jerry couldn't be with me today but he asked that I call him if they decided to do a biopsy.  That call never happened.  I never left the table.   

I learned a great deal talking with Dr. Pearson over the next hour.  She was very thorough because she was very certain of what she was seeing,  and when she left she made sure I had the titles of two books and she made sure I met Marcel, the breast care coordinator R.N.  And once again, I left the table after a biopsy to teach a new class. 

Jerry was with me Wednesday morning. Though I had been weepy once or twice before, this morning I had my first breakdown.   I just knew that things had just gone from bad to worse.  When Dr. Edwards called early afternoon, I was already in shock.  'There is another problem.  I think it best if you come in tomorrow morning so we can talk."  Once again he told me that I had lots of options, but once again I heard that familiar discomfort in his voice. 

Breat Cancer History - Part 6

So Monday (5/1) after I received 'the news' I was sitting in the surgeons office.  Dr. Edwards was very cautious not to spend much time talking about mastectomy.  Rather, he assured me that the size and other indicators in this tumor made it a good candidate for a lumpectomy (remove just the tumor and a small amount of surrounding tissue), followed by radiation, at a minimum. 

Next steps?  Schedule an MRI to get additional confirmation of what we are dealing with and pencil in a date for surgery.  OK - this sounded easy, I thought.  The MRI was scheduled for the very next day, 5/2 at 4:0opm and surgery was scheduled for the morning of Friday, 5/12.  Pre-op blood work, EKG and paperwork would be done at the hospital on Friday 5/5. 

Jerry and I arrived at Wolfson's for the MRI and were informed that they were several hours behind schedule (apparently some lady ahead of me freaked out in the confined space!).  We used the time to have lunch and otherwise share some time together; something we rarely have the opportunity to do.  For a couple of hours we laughed and chuckled, trying to make the best of a bad situation. 

The MRI was uncomfortable, but not painful (if you don't count the multiple efforts that were made to find a 'good' vein through which to inject the dye). I think Jerry was in worse pain than me as he stooped over and held my hand through the entire procedure - almost an hour.   As we left I was told that they would expedite the report to Dr. Edwards.

On Thursday, I had a hair appointment with my friend and confidant, Gary.  Having my wits about me, I told him what was happening and asked if he could help me get a wig, should the need arise.  It just seemed like a good idea to put my team in place.

Not having heard anything about the MRI results, the next day I stopped by the Dr.'s office after having my pre-op work done.  Jason checked the system and told me that it was still 'in progress'.

Another weekend without knowing.

Early Monday afternoon, 5/8 the phone rang --- it was Dr. Edwards.  "I have the results of the MRI back and everything looks good on the right breast.  There is, however, an area of concern on the left that we'd like to look at a little closer.  Jason will get you an appointment for another mammogram and ultrasound."  When Jason came on the phone the appointment was already set for 12:15 pm the following day. 

I just remember sitting there - dazed and confused.  I called Jerry to give him the news.  Within minutes, he was by my side.

L

Cancer is Lonely

Regardless of the support I have and the good wishes, good thoughts and prayers I'm receiving from people in my life, I have discovered that going through something like this is a very lonely propositon.

No matter how much people want to help, the bottom line is that I must go through it alone.  They can be there to give me a hug, to hold me when I cry, to tell me everything is going to be OK, but in the quiet of my own mind, I am the only one who silently considers what this means to me. 

I look at my dogs and wonder if I will out live them and if not, who will take care of them.  I look at my home and wonder if I will see the day it truly reflects who I am.  I look at my dreams and wonder if they will ever come true.  I look at the road before me - the treatments, the follow-up and the lifestyle changes to be made - and I know that no one will go through them for me.  Others may hold our hands or cradle us to give us comfort, but like birth and death, cancer is a road we travel alone.

L

P.S. Be sure to check out www.brownnosingonline.com to follow my Brown-Nosing 101 progress.

Breast Cancer makes you tired of waiting

I'll continue catching up on the history of this breast cancer diagnosis in subsequent posts, but today I find myself amazed at how tired I feel as I approach my next medical oncology appointment. 

These past couple of weeks have been a respite from this bad dream.  No appointments, no poking, no prodding, no pictures, no sterile rooms, no white coats, no needles, no knives, no drugs, no bad news and little pain (to speak of).  I've made great progress healing from the surgery and for all intents and purposes I am doing anything I could do before this all began.  It has been nice.

But today, when I reviewed my calendar, I realized that this week I am to learn more about my treatment options, assuming the oncogene tests come back on schedule.  The anticipation of this alone seems to have made me tired. 

There is always a track in my mind that constantly reminds me of my 'condition', but today there was another track replaying the message - "it's not over, it's not over."  Worse, it has occured to me that it will never be over.   From this point forward, things have changed. 

I'm still not sure whether this is a good thing or a bad thing. But as I write this, a beautiful red-headed woodpecker has just landed on the tree in front of me, changing my view. Maybe she is reminding me that change can always be a beautiful thing! I have always believed that these synchronous events are messages from God.  And now I notice that I'm smiling - for the first time all day. Cool.

Linda

P.S. Check out www.brownnosingonline.com to read my blog and get updates on the brown-nosing project.

Breast Cancer History - Part 5

Information was a little inconsistent about when I would receive the results of the ultrasound core biopsies.  My conversations with the radiologist and her concerns were worrisome.  Dr. Edwards thought I would know the results in 24 hours.  The radiology tech was very clear that someone would call me and specifically asked for a number where I could be reached.  Yet my post biopsy instruction sheet indicated I was to call the center in 48 hours, after 3:00pm.  Today was Wednesday.

Thursday came and went with no call.  Friday morning Jason at Dr. Edwards office called to make my follow-up appointment for Monday morning. It didn't occur to me until after I hung up with him that they might already have the results.  The rest of the morning and early afternoon moved at a snails pace.

Jerry called repeatedly throughout the day to ask if I had heard anything.  At 3:00pm I called the center myself.  I was told that the person who had the information had just stepped away from her desk but was assured that a note had been left requesting that I get a call back.  I called again at 3:30 and got the same story - "She's still seems to be away from her desk but the note is sitting right there. She'll call you back when she gets back."

I called at 4:00.  Same story. I then called Dr. Edwards office  to explain my situation.  "I'll put a note on Jason's desk and he'll call you as soon as he gets back,"  I was told.

I called the breast center again at 4:15 and got voicemail.  I called again at 4:30 and got the a message that the office was now closed.  I was pissed and in a panic and immediately called Jerry.  He'd been angry all afternoon about this situation and this made him livid.

At 4:40pm, Friday April 28th, the phone rang.  It was Dr. Edwards.  All I remember him saying is, "There is a problem," and then a moment or two later I heard the words "invasive ductal carcinoma."

"You have lots of options," he assured me.  But I could hear the distress in his voice.  It must be terrible to have to give people this kind of news.  Kindly, he suggested I try to have as a good a weekend as I could, under the circumstances.  "I'll see you Monday morning," were his final words.

I recall the rest of the afternoon and evening as something akin to a drug induced numbness.  I didn't know what to think, but I knew I had to think positive.  Still, I was concerned about what this meant I would have to go through over the weeks and months and years to come.

When I called Jerry he left work and was by my side immediately.  At dinner he continued to reassure me, but I was gone.  My mind kept drifting in and out of places I preferred not to go. 

Back home, I prepared to step in front of a new class the next morning at 8:00am.  At about 11:15pm the phone rang.  It was the restaurant.  I had left my purse on the chair.  In retrospect, this was to be the first of many things I forgot, ignored, overlooked, misplaced or otherwise screwed up over the next several weeks. 

I had finally found my limit.  I had finally found out how much I could and could not handle. 

L

P.S. Please visit www.brownnosingonline.com for information about the Brown-Nosing 101 project and a glimpse into how this diagnosis has affected my brown-nosing effort.

History - Part 4

I stopped to pick up my previous films on my way to Baptist's Breast Center once I arrived  was 'processed' fairly quickly.  This was the first time I had been in for follow-up work that was considered a concern and I was surprised at how quickly and accomodating everyone was, given that I was an addition to the schedule.

After what seemed to be a gazillion additional mamograms of the right breast and an hour on the ultrasound table, the radiologist came in and began to view the ultrasound images herself.  She seemed to be increasingly concerned and said she thought several areas should be biopsied immediately.  The call was made to Edward's office and the authorization was faxed over. 

I went out to the waiting room to talk to Jerry.  At this point I had two concerns - one for me and one for the fact that I was starting a new class that evening and needed to be home in time to gather my materials, change my clothes and get to class.  There was some concern about the timing so Jerry agreed to call the campus and let them know I might be a few minutes late.

After just a short while I was called back to ultrasound and over the course of the next 45 minutes had four areas biopsied and additional mamograms taken.  I left the center with a bandage wrapped around my chest, an ice pack on my breast and feeling light headed.  In retrospect, I believe some initial shock was now setting in. Everything looked surreal and  nothing made sense anymore.

One hour later I was standing in front of a class, a little off my game. 

The most difficult telephone call I have ever had to make

The weeks leading up to my diagnosis and the subsequent weeks of diagnostic procedures until my surgery were some of the most anquished of my life (ya' think?).  Who to share information with and when to share it became the most difficult decision I had to make. (Little did I know that was just the beginning of difficult decisions).

Once I was told there was 'a problem' I knew I had to tell my family and closest friends . But when? I learned of 'the problem' i.e invasive ductal carcinoma on Friday, April 28th at 4:40pm.  Do I call my friends and family and ruin their weekend?  Do I call on Monday and ruin their week? Do I have enough information to answer their questions?   After a few days of shock I did call my sister, Patty, who became my point person for information sharing.  I could always count on her to be there and I could always count on her to call if I hadn't phoned with an update. 

My call to her was very difficult because I knew that I was not only giving her bad news,  I was also changing her medical history with a single phone call. It was heartbreaking to hear the concern in her voice as she said told me she had been less than diligent with own her screenings.

Though Patty and I talked at length about when to tell my parents, it was still a difficult thing to think about.  I am not a parent, so I can only imagine how difficult it would be to receive such a call from my own daughter.  It was not the natural order of things.  Parents are not supposed to have to deal with dangerous diagnoses in their children.  Everything about this felt so terribly, terribly wrong.

A follow-up with my surgeon, Dr. Edwards, was scheduled for Monday after I received the news and  an MRI was scheduled for the next day which would provide more information.  Should I wait until after the MRI results to call my mom and dad? That's what I thought I would do.  But after the MRI results showed an area of concern on the opposite breast as well, I worried I still didn't have enough information to quell their fears and concerns.

The burden was very great and in the end, my wise friend Jeannine and my wise sister Patty both suggested that I might feel better if I told them.  They were right, but that call was the toughest one I have ever made - to anyone.

There is no easy way deliver bad news so I practiced what I would say and how I would deliver the message many times before I actually called.  The lump in my throat and the pounding in my chest made it almost impossible breath, let alone talk.  I made the call and made sure they were both on the phone so I only had to say it once.  Forever, these words will be indelibly be etched in my mind.

"Mom, Dad, I want you to know this is the most difficult call I've ever had to make to you and there is no easy way to say this.  I have been diagnosed with breast cancer."