Bye Felicia...I mean Kaiser

You know it’s time to post an update when people following your blog start messaging you to check if you’re still alive.  I know, I’m way overdue. 

I met with my Kaiser doctor in late June, 6 weeks after chemo ended, to review the results of my last CT scan, which showed my cancer is stable and that’s about it.  No follow up appointment scheduled, no treatment plan.  Nothing.  She was in a rush and I had too many questions.  I knew leaving there that day, it was time to move on.  Lucky for me, I already had an appointment scheduled to see a new doctor at UCLA.     

On Wednesday I headed off to UCLA to start a new treatment plan with the latest and greatest in breast cancer research.  What an amazing and incredible difference from Kaiser.  In May I made the decision to switch my insurance to a PPO.  This switch meant losing my double coverage (we have health insurance through Brandon’s work as well), but allows me to seek medical care just about anywhere outside Kaiser.  I was at a breaking point with my doctor and my care.  My questions were never really answered, my appointments were few and far between, tests and scans were taking weeks to book, and my doctor made me feel like I was a nuisance, like with stage 4 cancer, I shouldn’t bother.  I’m guessing a lot of doctors are like this, very analytical, focusing on facts and statistics.  But there is a lot to be said about hope.  It’s powerful.  

Hope has a direct impact on how you perceive a situation and how you chose to face the obstacles in your way.  It is well documented that outlook has a profound influence on your prognosis.  Optimists do much better than pessimists.  And while I consider myself the eternal optimist, I am human and I have my moments of doubt and depression.  Understandably so.  Most people in my situation would as well.  There are times I feel panic start to rise up and threaten to engulf me in sheer madness.  Raw and undiluted.  And boy, does it sneak up on you!  A fellow cancer fighter once told me, when I was first diagnosed, to never linger or let my mind stray to the idea that my kids will grow up without their mother.  But the mind is complex and plays trick on you.  It betrays you and holds you hostage to its thoughts.  It’s a terrible feeling, worse than any physical pain I have yet to experience.  But hope is the best medicine for depression.  It breathes life into you and pulls from the panic and allows you to live.  It rescues you from captivity.  When I was at Kaiser, I felt the hope slowly seep away and no matter how hard I tried to hang on, I was losing my grip. 

When my Kaiser doctor told me my cancer was terminal, it was over phone.  Yes, that’s right, over the phone!  Brandon asked her what the test results meant, could I beat this?  Her response was, “No, this is a terminal diagnosis”.  Then…silence.  She sat there silent over the phone as the panic overtook me and I sobbed and Brandon sat frozen and shocked.  She was silent for quite some time.  Six little words destroyed any offer of hope.  It is by far the most excruciating pain I have ever experienced in my life.  I felt trapped.  I was suffocating on her words.  And in that time, she failed to console or offer any hope.  Of course, many might say it is not the responsibility of the doctor to lift you up or give you hope, but that's like saying a teacher isn’t responsible for giving students hope either, for making them believe they have the power to succeed, to overcome their circumstances.  And, you know, maybe that’s true, that doctors and teachers aren't obligated to foster hope…but those that do are often the ones that make a difference and achieve greatness.  Words are powerful.  Deep down I knew I needed a new doctor, one that had the same passion for their patients, like I have for my students.  I found her at UCLA.  

Dr. Rena Callahan was prepared for our first visit in a way that proved her expertise and compassion.  The first thing she asked when we met was to tell my story from start to finish.  She asked me questions in between and didn’t make me feel rushed.  When we discussed medications she knew what the latest studies and trials showed and had reasoning for every decision of the treatment plan she made.  She treated me like I had a life to live and we were going to do our damn best to make certain I had the right medications to ensure it.  At the end of our appointment, she left me with a solid plan and renewed hope.  At the end of the appointment, as Dr. Callahan left the room, Brandon, Jeanette (my die hard, crazy protective, at every appointment sister), and I each looked at each other in disbelief.  I could breathe again.  On Wednesday I met with Dr. Callahan again and a palliative care nurse. I started four new medications:

1. Ibrance

One pill a day for 3 weeks then 1 week off

Ibrance was just FDA approved last year and is hailed a “breakthrough” drug in the fight against breast cancer.  In studies, it doubled the median delay in disease progression.  Ibrance works by disrupting proteins in cancer cells from signaling and therefore slowing it’s ability to grow and divide. 

2. Faslodex

2 Monthly injections

Faslodex works in conjunction with Ibrance.  Their a killer team…no pun intended.  Faslodex essentially blocks estrogen.  It sits in the cells and leaves no room for estrogen to take up residence and feed the cancer.   I get two injections at a time.  One in each cheek.  The medication is so thick it has to be given slowly. 

3. Denosumab

Monthly injection

Denosumab is a very expensive bisphosphonate that helps stop bone cells from breaking down while strengthening bones.  My last CT scan showed no new cancer grown in my spine and showed what looked like new bone growth.  But my back is still hurting.  I am hoping this medication will be the ticket to some much needed relief. 

4. Lupron:  

Monthly injection

This medication will shut down my ovaries and put me into menopause.  My cancer is estrogen fed, so shutting down my ovaries will help to reduce the amount of estrogen in my body.  

The last thing to do is sit back and brace myself for any side effects.  The most common side effect that I will have to keep a close eye on is a drop in my white blood count due to the Ibrance.  Dr. Callahan said if my counts do drop, I may need to hold off Ibrance an extra week.  2 weeks off instead of one.  I feel confident with my decision to continue treatment at UCLA.  The care so far has been far superior and is worth the crazy 2+ hour commute to get there.  Both visits the waiting room was empty when I got there and empty when I left.  It felt like I was the only patient of the day.  No overbooking, no rushing, no half ass answers and care.  Dr. Callahan wants to see me once a month for my monthly dose of injections and to see how I’m tolerating my cancer cocktails. 

 

I know the reality of my situation.  My switch to UCLA isn’t going to save my life, but I have no doubt it will extend it.  Whether by 1 week or 10 years doesn’t matter, I just know UCLA will give me more precious time with my family.  I’ll take whatever I can get.