I Am Linda

Alien adventures

Last Friday, 7/14, I had another pre-radiation appointment where I actually visted the radiation room. It was weird.

I think I've been watching too much science fiction because it looked like one of those rooms you seen on a space ship where aliens perform experiments on terrified, abducted humans.  Inside a very big room is a narrow table (how do big people fit on that thing?) with a huge, futuristic looking machine attached at one end.

The machine has a large round 'eye' that emits a laser looking light.  It looks like it has the potential to move 180 degrees around me (that's my best guess since my vantage point is somewhat restricted while lying flat on my back) as the technician makes her adjustments. 

The room itself has computers and cameras on the walls with a big red light that buzzes and flashes, in red, BEAM ON, when they turn on the zapper.  Usually everyone has vacated the premises when that happens - except me, of course.  That's comforting.

We shot some pictures (I'm not quite sure what types of pictures - that's one for my question list) that Dr. Sinopoly will review to determine if everything is OK to get started.  Once again I was marked up with a sharpie pen.  This time I was asked to not remove the marks over the weekend.

Sure - between the sweat and the showers there's no chance that will happen ;-). 

So here it is, Monday morning, and in a couple of hours I'll make the trip for my first visit.  I've heard it is uneventful.  I show up - have a treatment - and then leave.  No poking or prodding or pricking or  anything like the first part of this journey. 

Nope, none of that.  This time the only discomfort will be my skin sloughing off :-(.  But I'm trying to keep a good thought.

L

Growing anticipation and tamoxifen

This past week has been one during which my sense of anticipation has begun to grow again.  Having had about a month to become strong and get away from 'procedures' I now realize that is coming to an end.

On Monday I met with the medical oncologist to confirm my  chemo decision.  I talked at length with his PA (physician assistant) Lynn about the side effects of hormone treatment - Tamoxifen.  The plan is to take this drug for 5 years. Yup--- a half a decade, twice a day.  It is supposed to interfere with my cells' hormone receptors so any bad girl cells won't be trigger to start growing wildly again. 

The whole side effect thing is weird.  I have done my homework.  Outside of the really dangerous things like blood clots, endometrial and ovarian cancer (swell) the rest seem like nothing more than a nuisance - hot flashes, moodiness among them.  All of the clinical information I read also included weight loss, but when I asked Lynn about this she said in all her years in healthcare she didn't know anyone who lost weight - most people gain 5-10 lbs. 

This puzzled me for two reasons. First, I am obsessed about it because I'm not going to gain weight. Period.  I'm a fanatic about my weight and no little white pill is going to change that.  Second, it was inconsistent with EVERYTHING I had researched and read.  Then I started thinking about these three things...hot flashes, moodiness, weight gain. 

Then it occurred to me that most often the people receiving this drug are women between 40-60+, right?  Prime menopause years with hot flashes and moodiness and prime middle age spread years when people gain weight.  Duh!  Did the clinicians and researchers hold these things constant during the trials?  In subsequent data collecting years?  Could this even be done?  There is over 30 years experience with this drug but I have to admit I've lost a little respect for the trials and data collection methods.  There is no substitute for good common sense and critical thinking now and again!

Anyway...they gave me the prescription and it sat on my dining room table for two days before I had the courage to have it filled. Throw another $500 on the fire each year for the next 5 years.  Once that shocker was over I looked at the bottle for another couple of days.  The thought of becoming one of America's pill poppers was depressing.  Now THAT is a reason to become moody.

Finally, on Friday, 7/14, I found the courage to swallow the first one.  Only  1,823 days to go - 3,646 pills left! Whoo hoo!

Tattoos

Once I got back from the 4th I spent some time talking to Dr. Harris' office trying to cancel my appointment for Monday the 10th.  My decision was made and I didn't see why had to tell them so face to face.  I would need to pick up a prescription (more on that at another time) but otherwise I wanted to move on. 

After a few calls I talked with Dr. Sinopoly (radiation oncology) on the morning of the 7th and after answering a list of questions I had for him he scheduled my simulation for later that day.

The simulation is the first step in the radiation process that  defines the area to be treated, calculates the angle of the beam, etc.  Lying on/in a machine that  looks like a CT scanner my arms were above my head so I couldn't really see what was going on.  It was only once I could stand up and look in the mirror that I had a chance to see what all the activity on and around my chest had been about.  I had been marked up with a sharpie pen, sticky wires and 3 tattooed dots that would  help identify the place where the machine needed to be calibrated each time I visited.

The entire process took about an hour and it was fun talking with the tech, Melanie, and Dr. Sinopoloy.  When it was over I scheduled the next follow-up procedure that would verify the measurements, angles, etc.  I also scheduled my treatments.  They will start on Monday, July 17th at 11:30 and will continue at the same time, every weekday, through August 30th.  What a summer this will be!

During the scheduling process I happened to spot a familiar name on the calendar.  It actually caught me off guard and when I asked Melanie about it she confirmed that it was, indeed, a friend I had lost contact with about a year and a half ago. Since I  don't believe in coincidence I made a call to her immediately upon returning home.  Imagine my surprise when she answered the phone.

"I've been thinking about you," she said.  "How lucky for me that I decided to come home for lunch today." (Luck - that is not what I would call it.  More like a sychronous event).  To protect her privacy I  simply said it had been too long and we should get together to catch up.  It was then that she came right out and told me..."I had breast cancer."  I couldn't help myself.  I blurted out..."Me too!"

We scheduled lunch!

The 4th of July Holiday ---

The trip to my  sister's in North Carolina was not without event. Four hours into the six+ hour drive my air conditioner died. I was later to learn that the compressor was shot - seems to be a chronic Volvo problem.  It happened to my other Volvo at about the same mileage and everyone I know who has one smiles and acknowledges the obvious -- what can the Swedish possibly know about air conditioning?  In my not so humble opinion this is an area where Ford just might be able to help them out.  But I digress...

I spent the weekend rethinking my life priorities, drinking martinis with Pat and Len, going to class  (teaching online does have its advantages), shopping consignment shops with my sister, floating in the pool, eating well and having some great conversation. 

We all talked about my chemo decision and though cautious not to sway me either way, Len seemed to concur with my decision.  (Though I suspect he would have concurred with the opposite decision as well).  He made a number of good points, and one in particular that I have continued to ponder.

I have been concerned about the possible long term effects of radiation and hormone therapy.  After all, I'd prefer not be a little old lady with all sorts of issues that make life even more difficult than the aging process might be.  He advised me that I should worry less about what will havppen in 30 years and more about insuring that I have another good, strong, healthy 10.  After all, if quality of life is what I am after, there may be some inevitable decline in function as I age anyway.  If I make decisions for my old age but don't get a chance to get there,  were they the correct decisions?

Good point.  And a frightening point.  I had never thought about it in quite this way. If I were to have 10 healthy years what would I want them to look like?  For some reason I've always thought I had plenty of  time to get it together. A self admitted late bloomer,  it appears I have been asleep at the wheel; adrift at sea without a rudder.  There has been so much I've wanted to really accomplish and so little that I truly have because I figured there was always time.

For most of my life I have been floating from port to port trying to find a way to earn a living while the life I wanted to make for myself remained a vision somewhere out on the horizon that I could occasionally see through a port hole.  I'd get there, eventually, I hoped.

Well, that approach now seems to be a load of crap. I had better set sail towards that shoreline quickly.  If I'm blessed I'll get there with years to enjoy myself. 

And if God has other plans for me, when I leave I would prefer to be heading towards what I see through that port hole as opposed to just thinking about it.  My challenge will be that I am a dreamer, not a doer. 

I love to have ideas - I love to consider their potential - and then I love to hand them off to someone else to make them  happen because by that time I've already thought of something else. 

I think I need to hire staff to make my dreams come true! :-).

Oh -- there was one other 'event ' over the 4th that was somewhat untimely and ironic.  On a cool Monday morning while we were all enjoying our coffee outside, the  phone rang.  Patty got up to answer it and when she returned she sat down and said, "What the heck.  That was the radiologist.  They want me to come back in on Friday for a follow-up mammogram because they'd like to re-examine an area on the right breast. 

Unfreaking believeable.

Decisions

To say that this ordeal has been nothing more than one long decision making process would be an understatement. 

From the very first moment - starting with the choice to schedule my regular mammogram,  I have had to make decisions about what doctor to use, what facility to visit, what options to select, who to tell, when to share information and what to tell people. 

Add to that the choices about priorities, how to spend my time, rearrange my schedule and my plans and what I should or should not do differently as I move through this and on with the rest of my life.  I have clearly had a few moments when I realized I could have made better choices but overwhelmingly it has become apparent to me that a couple of new choices now had to be a regular part of my life.

First, I need to choose to be honest.  I'm usually honest, but at great risk to myself I have often withheld my true feelings if I perceived they might cause others discomfort or pain.  In retrospect I don't believe this as been wise or fair.  It has certainly spared others but it has also be deceitful in a way since those in my life have not always had the benefit of knowing the real me. 

A second choice, one that I seem to have put on the back burner for a number of years, is to take more vacations.  I am who I am as a result of a life full of interesting (though not usually dangerous) adventures and exposure to people and places.  These experiences have always filled me with insights that I now constantly draw upon in my new chosen professions - teaching and writing.

It is fitting then, that I would exhibit my new independance from old choices and exercise my right to make new one by spending some time out of town.  My sister, Patty and her husband, Len, graciously invited me and the dogs for a holiday visit and since it looked like the last opportunity I would have to get away for a few days before radiation treatment begins, I decided to make the trip.

My nmbers --

8:30 am I walked into Dr. Harris' south office and I didn't even need to sign in. There stood Holly, my new best friend, talking with her colleagues. "Come on back," she smiled. 

During the delay I had a good deal of time to do some research about the OncotypeDX test.  This test returns a score between 0 -100 that represents the probability of recurrence of this type of cancer somewhere in the body, over the next 10 years.  0-7 was considered low probability.  8-31 was considered moderate probability.  32+ was the "oh shit' range. 

Dr. Harris started by sharing that my blood work was normal and I was definitely not pregnant.  Funny guy.  As he started talking about the test results I just kept thinking, "give me the numbers...give me the numbers!"

One was a 7.  The other was an 11.  My heart skipped a beat. Not a 0, but definitely not bad!   Naturally , the combined risk was slightly higher (later that day my brother helped me calculate that score --- the relative probability is the square root of the sum of the squares of each number --- for those of you who care).  That combined number is 13.

I clearly got the message from Dr. Harris that I should consider the fact that both tumors presented at the same time.  He then went on to say that choosing against a systemic treatment (chemotherapy) would be an OK decision.   Choosing for the treatment would be an OK decision, too.  I also got the sense, every so slightly, that if he was making the choice for himself, he would err on the side of caution i.e. go for it.

I, on the other had, having read and researched for coutless hours, considered not going for it to be the side of caution, especially  with these new data inputs.  In general my normal probability of recurrance would be 1% per year for 10 years ---- i.e. 10%.  The difference here --- 3 % for the combined risk, seemed inconsequential when you consider that there is concern about the possibility of causing other cancers, long term, as a result of these chemo treatments. 

I am a firm believer in the body's ability to heal itself, and I am the only one on this planet who knows what types of both external and internal stresses I was subjected to or felt over the past years that could have contributed to the failure of my immune system to fight this. Managing those factors and those stresses was going to have to be an integral part of my healing and survival treatment.

I told Dr. Harris that I was 90% sure I would decide against the treatment.  I was about to spend the 4th of July weekend with my sister and her husband, Len, a physician himself, so I figured I would discuss it with them and confirm any unsettled feelings I was having about making what seemed to be such a fateful decision. 

As I was to learn later, through reading and discussion, there is nothing fateful about the decision.  Especially under my set of circumstances.  I could choose yes and still have a recurrence.  I could choose no and still have a recurrence.  No one will ever, really know what the correct choice was.

I choose no - and no recurence, thank you very much.

A sense of normalcy

In the grand scheme of this breast cancer treatment, chemotherapy, if it is chosen, comes first.  That means that for couple of weeks I had no doctor appointments.  I had been told that the result of the Oncotype test would take about two weeks so my next appointment was scheduled accordingly. I had the luxury of having my life return to somewhat normal again.

After returning from my Dad's party there were a couple of phone calls that gave me the feeling that I might be waiting more than two weeks.  First there was the call from the lab to tell me that though they spoke with my insurance company there was a good chance that this test wouldn't be covered.  Then there were the calls back to Dr. Harris' office to let them know that it was OK to release the samples.  Then there was the 'wait' time while Dr. Harris and his MA (medical assistant) Holly were out of the office. 

Still, it  was nice to feel stronger and more rested each day.  My family, friends and I were certainly anxious about the news but in an odd way it was good to have nothing out of the ordinary to say to them.  The day of my next appointment I called Holly to check if the results had arrived. The answer was no.  I rescheduled for a week later.

This one week delay was no big deal to me.  Whoo hoo!  Another week in blissful ignorance with no doctor appointments.  I was feeling like myself again and even my friends on campus were telling me that it was good to see me smile.  It felt good to smile again.

I caught myself telling people that it actually felt good to feel normal, something I would have NEVER imagined coming out of my mouth!  When another week rolled around I called, once again, to confirm that the results were back. Yes.  Sort of....

One of the results was back, but apparently the second pathology sample had never been sent.  Though this was seemingly an honest mistake  -  after all, it was an anomoly having two tumors at once - it was a bit frustrating.  Holly was on it quickly and she was certain the result would be back the following week.  So....I rescheduled, again.

This delay was a bit of a challenge.  My phone rang with questions from family and friends.  The email messages started coming from friends who were waiting to hear from me.  It was easier for me to drop out of sight than it was to repeat the story since the more I had to retell it, the more frustrating and stressful it became for me.

Another week went by.  The morning of June 28th I called Holly to confirm.  When she called me back she had a great deal of information, but not the piece I wanted to hear.  Yes, the test was complete.  The report had been written.  But the lab is in California and the person who has to sign off on it before they could release it to her won't be in until later, blah, blah, blah.  Bottom line?  Reschedule for tomorrow. 

So I rescheduled for the following day at the Baptist South location --- I would have driven to Miami at this point.  Holly called me later that afternoon to tell me she was holding the results...she'd see me at 8:30 in the morning.

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.....