Kaity Kasper

Blog

Changing of the Guard

Evan's lab was one floor up and down the hall from the treatment room, so even on days when I wasn't getting chemo, it wasn't uncommon for me to roam the halls at Massey, coming or going from lunch or taking a break from studying for the LSAT at one of the lab benches.  It was on one of those days that I ran into my physicians assistant, just outside the lab. 

"I'm so sorry about the extra rounds," he said as be pulled out of our hello hug.  "But that should be all we need to add.  Then you're done."

I was just past my original halfway point and hadn't heart about any additional rounds.  It felt like he punched me in the gut and gave me a wedgie at the same time.  A cruel attack and a sick joke rolled into one.

"What extra rounds?"  As the words left my mouth his face fell.  He thought Dr. Ginder had already told me, but my appointment wasn't until the next day.

This was not my favorite surprise of all time.

*   *   *

When my mom told me that she was going to be tested for the BRCA gene mutation, I told her I didn't want to know the results.  I was already living with the fear of a recurrence in the back of my mind - I didn't want to add the fear of another cancer.  But when she told me she scheduled her mastectomy and hysterectomy, the cat was out of the bag - she had tested positive.

So I tried to convince Dr. Ginder that we didn't really need to know if I was positive too.  But he wasn't having it.  In retrospect, I am glad he made me get the test.  My cancer would certainly have been stage four if I wasn't being monitored as aggressively as I have been. 

During our first visit together, Dr. Boardman gave me a list of symptoms that I was required to call her about.  Bloating.  Abdominal pain.  Things that could easily be mistaken as normal.  She explained to me that the issue with gynecological cancers is how quickly they develop.  Stage one, she told me, is generally discovered by accident.  Stage two might as well not exist.  Most lucky women catch it at stage three, but very, very many more don't get diagnosed until stage four. 

I was lucky.

*   *   *

Even with my heavily increased risk of developing aggressive breast or ovarian cancer (or one of the many other cancers that the BRCA1 mutation is associated with), I was never ready to take any prophylactic measures to reduce that risk.  The small, quiet voice kept telling me it was the wrong decision for me.  I was supposed to wait it out. 

And so began a years long battle with two of my [male] oncologists.  They felt strongly that my body was a ticking time bomb just waiting to revolt.  They pushed hard for me to schedule a double mastectomy and hysterectomy.  They wanted me to do it yesterday.  I went so far as to meet with the [male] plastic surgeon who would do the mastectomy, but none of the available options - or the amount by which my risk would be reduced - seemed worth the 16+ hour surgery and months of recovery he was proposing.  So I put my foot down.  Surgery wasn't for me.  Not yet.

That's the point when one of the doctors told me the didn't understand why I was being so stubborn.  Wouldn't I want insurance to pay for me to have breasts nicer than my own?

I spent the next year going through the painstaking process of transferring my care - and fourteen years worth of medical records - to female doctors.  They just understand these things in a way men can't.  I hate saying that.  But I've come to learn that its true.

*   *   *

"So, I guess you heard Dr. Carter is leaving Massey."

If not for the thermometer in my mouth I'm sure I would have emitted something akin to a squeak.  My poor research nurse walking in ten seconds too late to keep this new nurse from spilling the beans - I wasn't supposed to learn this until I saw Dr. Carter this coming Monday.  She had wanted to tell me herself.

"No - she didn't know."

Tears came immediately.  I felt abandoned.  I felt like the rug was being pulled out again.  And when I learned that my care was being transferred to a male oncologist the tears came fast and hot. 

This was also not my favorite surprise of all time.

*   *   *

So this leaves me with some decisions to make.  I can stay in the trial - the decision my doctors uniformly believe is the best decision medically - and be followed by a doctor I am not comfortable with for the next 14 months.  After that - assuming everything went well - I can transfer my care back to Dr. Carter or Dr. Boardman to be followed for any recurrence.

I can try to get moved to another hospital that is carrying out this study - assuming a female gynecological oncologist can follow me.  Both UVA and Duke have patients enrolled, and both would be feasible - but not ideal - locations for me to continue my care.  Financially this move would be rough.

Or I can drop out of the trial and choose to continue my chemotherapy regimen with Dr. Carter or Dr. Boardman at their hospitals.  I wouldn't have access to two of the drugs that I am getting as part of the trial, and it will most likely end up prolonging treatment. 

Honestly, I do not love any of these options.

*   *   *

People used to ask me why I wouldn't get surgeries that would reduce my risk of developing cancer, and it was always difficult for me to articulate the reasons behind my decision.  Its hard to explain that there was a small, quiet voice telling you to trust that if cancer comes there will be the resources available to treat it.  Whether that would come in the form of new treatments, a clinical trial, or the physicians in my area at the time, I knew in my heart that God would provide everything I needed in that situation.

And so far in this journey, He has.  It was only through His grace that I slipped into this clinical trial in the first place.  It was because of Him that an MRI tech picked up on the smallest trace of fluid on my film.  God's hands are all over this road, and I have no reason to believe that He is going to jump ship on me now.

Dr. Carter's last day is July 1, so I have some time to make my decision.  I know He will guide me to the right one.  He always does.

And that is my favorite surprise of all time.