I Am Linda

Oncology

The week before the North Caroline trip I met with Dr. Sinopoly, the radiation ocologist and Dr. Harris, medical oncology.  I learned about the radiation portion of the 'breast conserving protocol - 33 treatments,  5 days a week for about 6 1/2 weeks.  Swell.

I learned that the purpose of this therapy is to destroy any lingering cancer cells (if there are any) that may still be located in the breast tissue.  The radiation actually works to destroy the cells' DNA so it can't replicate. The bad news is that it also destroys the good cells, too.  That's why one side effect can be fatigue and my the cells undergo, quite literally, a fight for their lives.  Exercise and good nutrition are ways to combat this, so I'll be all over that!

The medical oncology approach was quite a different story.  Here again, the bilateral nature of this throws a kink in the plan.  Unless I want to treat this aggressively, taken separately, the tumors were of a size and stage and of markers that would indicate no chemotherapy is required.  Chemotherapy, I  learned, is a systemic attempt to destroy any rogue cancer cells that may have broken off and traveled somewhere else in the body.  The problem with it is that it can sometimes cause other cancers or issues and it often has unpleasant side effects - hair breakage, nausea, and a general beat up feeling, among other things.

The fact that I had bilateral tumors present at the same time was a cause for some elevated concern.  Dr. Harris and I discussed three things. 

First, hormonal therapy will be recommended.  For the next five years I'll take prophylactic measures (pills) that will reduce the amount of estrogen my body produces.  My tumors were estrogen receptor positive which means they respond to estrogen.  The theory goes, reduce the estrogen and switch off the ability of the cells to receive this hormone and grow another tumor.  (Am I the only one who doesn't get this?  If God intended me to have estrogen, why is it that this naturally occuring substance ---something my own body makes--- causes this life threatening mutation?)

Second, we talked about being tested for the BRCA1 and BRCA 2 genes. These are specific, hereditary gene mutations that indicate an increased risk for breast and other cancers.  Of course, this is an intersting dilemma because what do you do with the information?  If it is negative I ask more why questions.  If it is positive, what do I do?  A preemptive strike and remove all the parts of me that make me a woman?  Ignore it and hope for the best?  And of course, the biggest issue of all is the fact that it has affects my family members, too.  Does my mom want to know?  My sister?  Does my brother want my niece to know?

Finally, we discussed another testing option that was approved by the FDA about a year ago.  The Oncotype DX test looks at 21 different markers in the tumors and returns a probability of recurrance, somewhere in the body, over the next 10 years.  With this information we can decided if chemotherapy would be advantageous (supposedly) or not  (supposedly).  I opted for the test.Since it is new, there is a good chance that my insurance won't pay for it, but that is of little concern for me now.  If I'm not here a few years down the road, no one will collect on anything. 

I want more information.

My Dad's 80th

It took some time for me to look and feel like myself.  I was more tired than usual for several weeks after surgery. I presumed that had to do with the residual effects of the entire ordeal the 6+ weeks prior, the effects of the surgery, the anesthesia, the pain and the frustration.

Everyone I ran into, especially on campus, was incredibly supporting.  I was to learn later that some of them were concerned because I looked tired.

On June 4th my sister threw a party for my Dad, who turned 80 on May 26th.  I had already decided I would not bring my 3 dogs to the event.  They require (demand) a significant amount of attention and effort normally, but even more so when they have lots of people around.  Combine that with my sister's 2 dogs and you have a pack that can drain all the energy from even the most active souls. 

I headed up the road to North Carolina and met my cousin in Savannah where I was scheduled to pick up a driver to help me with the tip.  I wanted to be in 'party' shape when I arrived and I figured a nap on the way would help.  My cousin Dan and his wife, Nicky, have 3 boys Sam (19), Alex (18) and Ben (16 at this writing).  I figured one of them would like to log some windshield time. 

As it turned out, Dan drove my car and we had some great conversation all the way up to NC.  Unfortunately, that meant that I didn't get my nap and I looked tired when I arrived.  I suspect I would have looked tired anyway.  Though everyone was great and we had a good time, Nicky later pulled me aside and admitted that I looked tired and everyone was concerned.

No kidding.  I HAD BEEN CONCERNED FOR WEEKS!  :-)

Bless their hearts. Throughout this I have learned how loved I am by those I call my family and friends. Somehow I knew, but I don't believe I could feel the love before.  Now I can.  What a wonderful revelation this has been.

Catching up with the story ---

I find it hard to believe it has been so long since I sat down to write ....

I remember the weekend after surgery  being  a bit like waking up from a  bad dream.  Since it had only been a couple of days the pain was very real and the narcotic pain killers, though wonderful at removing any care I had about what I was feeling, also had an unpleasant side effect for me.  They turned me into a cranky bitch.

When I was 'on them' I was a great deal of fun - kind of like I am normally only much more carefree :-).  When they wore off I turned into an evil doer who snapped at everyone - well actually just at Jerry since he was the only one around.  Fortunately, I am very aware of my behavior most of the time and when I made the connection after just a couple of days I backed off of them.  Unfortunately that meant that I was in more discomfort than I needed to be. 

I also tried to push things a bit.  Dr. Edwards said it would be a long weekend and then I could begin to try normal ADL's (that's activities of daily living for you non-healthcare types).  He did warn that I wouldn't be doing any heavy lifting, controlling 200 lbs. of dogs or be back to yoga for a few weeks.  This wasn't quite the way things went for me. 

I was disappointed that I didn't get back to things as quickly as I wanted to.  I remember a tearing sensation at the site of the incision on my right side on Sunday - a complete accident if there is such a thing. I went to flick a bug with a fly swatter and that slight action was all it took.  I'll never know what exactly happened, but that side --- my right, of course ---- seemed to heal much slower. 

All the reading I did indicated that the quicker I could begin use these muscles and my arms again, the quicker I would gain full range of motion and strength.  Not one to wallow in too much pity for too long, nor to accept limitations, by the end of two weeks I felt I was 80% back to normal.  At the end of 3 weeks I was at 90%, hauling wood, pulling weeks, mowing the lawn and walking dogs.  There was still some discomfort, but nothing that was severe and it waned each day.

My follow up appointment with Dr. Edwards was on 5/23, so between the 12th and then I removed dressings (probably sooner than requested) and pulled off steri-strips.  There was only one incident where a spot at the original incision site started to bleed slightly.  Otherwise, I was healing great.

Dr. Edwards gave us the good news - not a thing to be found in the lymphnodes and clear margins around the tumors.  There were good prognostic indicators everywhere.  The next step was to meet with the medical and radiation oncologists. 

On to the next scene in my dream.....

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.