Sunday, December 30, 2012

Two Weeks Before My Cancer Dx

The two weeks before my cancer diagnosis, my family and I were in Ecuador and Peru.  I just learned how to add photos to my blog, so I thought I'd show you a few sights we saw.  In the colonial section of Quito, there was a wonderful local band playing for a Quito's Founder's Day Celebration. 

This is the organic farm in Ibarra, Ecuador where Nathan worked for two months.  Nestled in the Andes, the views were spectatular!

This is a view of Machu Picchu from Huayna Picchu, which is the large mountain often pictured behind Machu Picchu.  My family and I climbed Huayna Picchu and were able to look back that this amazing sight.  

Wynn and I from near the Guard House of Machu Picchu.  Huayna Picchu is in the background.   Nathan's in the last picture hiking back from the draw bridge at Machu Picchu.  Nina didn't like any photos of her, so I wasn't allowed to post any. 

Friday, December 28, 2012

The Battle Begins!

         Today was a very long day…doctor’s appointment at 8:15 am, cancer/chemotherapy education session, and then 5 hours of blood testing and IV chemo infusions.  I got home after 4 PM.  Whew.  I’m on a cocktail of three different chemo drugs, each trying to control the cancer in a different way.  I received pre-chemo medications to reduce allergic reactions to the chemo,  stomach upset, and nausea.  I guess these pre-chemo meds work because I was told that some patients gain weight during chemo. 

         Nathan, Nina, and Wynn came for the education part.  I’m so glad they were there to hear the information with me – I’m sure I missed things.  Brigid came at lunchtime, with lunch, for all of us.  What a pal.  She and Nathan sat with me for the afternoon, chatting one second, then watching me sleep the next, as the meds kept knocking me out unexpectedly. 

         Getting chemotherapy feels like such a double-edged sword.  On one hand, I’m relieved to finally be actively fighting this cancer.  I know that in the past two weeks since it was discovered that something bad was going on inside me, I’ve been so busy getting tests, biopsies, seeing doctors, getting second opinions, etc.  BUT, during this time, I, we, had done nothing about the cancer yet.  It was still inside of me, growing, and probably spreading some more.  Today that changed.  However, chemotherapy is scary too.  There are very unpleasant side effects…many of them.   It’s difficult, (but not impossible) for me to wrap my head around the idea that I consented to getting chemicals infused into my body.  I EAT ORGANIC FOODS! But, I signed the consent and laid my arm out for the IV. 

Wish me luck...and I think luck has a lot to do with whether chemotherapeutic drugs work, or not. 

Thursday, December 27, 2012

The Mutation I Longed For...

…has eluded me.  Poop.  I learned yesterday that the tumor mutations that are favorable to the targeted medication therapy, (the twice-a-day pill) were not present in my tumor.  Which now means that I have to turn to "Plan B", which is traditional chemotherapy.  I am so disappointed.  I was really hoping to have an easier therapy course for my family and me.  So, as I eloquently  outlined my situation to Nathan and Nina…."It’s the same shitty disease, it’s just a different battle now.” 

            Phone messages are out already this morning trying to schedule a doctor’s appointment, IV infusion education session and IV session.  Hopefully we can get this show on the road tomorrow.  I also want to hit the wig shop sometime soon.  Sheeesh…so many ducks to get in a row.

Wednesday, December 26, 2012

More Testing, Second Opinions, and Exercise

         Following the initial imaging studies, (CTs, MRIs, bone scan), what we needed was a piece of tumor to confirm that I had adenocarcinoma of the lung, which had spread.  So a couple of days after going to the ER, I was back at the hospital for a liver biopsy.  Apparently, getting a piece of liver is easier, safer and less painful than a lung or bone biopsy.  I have to say that in the big picture of life, the biopsy was pretty easy.  Waiting for the results was much harder.  First I had to wait to confirm that I have adenocarcinoma before we could send it to a specialty cancer genetics lab in California for tumor mutation analysis.  By Wednesday, December 19th, my cells were headed to sunny California.  These results would take about a week and would direct treatment – either the pill, or traditional chemotherapy. 

         In the mean time, my well-connected brother-in-law, Bob, was able to make important contacts for me.  By the end of the first week of my new odyssey, he had arranged for me to have second opinion appointments with clinical research oncologists at Northwestern University Medical Center and at the University of Chicago Medical Center.  These two experts specialize in non-small cell adenocarcinoma and have large cohorts of patients just like me.  I met with both and am so relieved that they both agree with my local oncologist’s care and plan.  Both have worked in collaboration with my oncologist or with someone in his practice in the past and are happy to co-manage my care.  For me, one of the important reasons to get hooked into a large cancer care center is because in the future if I need a clinical trial or research medication, I would only be able to do that through such a center. 

         So being that I am a regular exerciser, I am told that for now, I can do low impact activities.  After I get another infusion for strengthening my bones, I should be able to go back to my regular activities. 

I Thought It Was My Gall Bladder

Recently, I was diagnosed with metastatic lung cancer.  This news has stunned my husband, our children, family, friends, our co-workers and me.  Although most of you know the beginning of my story not everyone does, so here goes…

In October, Nathan left home to work on an organic farm in Ibarra, Ecuador.   On December 1st, Wynn, Nina and I left to visit him on the farm, pick him up, and then we all went to see Machu Picchu in Peru.  All of that happened and it was an amazing family trip.  We walked and hiked in both countries, including Huayna Picchu at ~10,000 ft.  I felt healthy and strong.  Wynn and I returned home to get back to work and Nathan and Nina returned to the farm to work a few more days. 

A day or so after returning home, Wynn took me to the ER at the hospital where I work and he is on staff, for abdominal pain and mild nausea.  I thought I had a stomach bug from South America, or more likely, a gallstone.  The good news was that the abdominal ultrasound and CT found a normal gall bladder, but the bad news was they found metastatic lesions in my lung, liver, and ribs.  At the time, it was not known where the primary cancer was, but we knew that it had already spread to other organs.

Since that day, I’ve had an extensive work-up and we now know that I have non-small cell adenocarcinoma of the lung with metastatic disease to my liver and many of my bones.  (Reading the bone scan report is really depressing.) 

One promising piece of information we learned early on is about tumor mutations and targeted therapies.  Some patients with adenocarcinomas have particular mutations which, if present, can be treated with a pill…an oral medication…no IV chemotherapies…no hair loss…no nausea.  But I needed additional tests to know if my tumor had a favorable mutation before I could start the medication.  More tests…more waiting.

A word about being the sick person:  It is extremely difficult to be THAT person.  I watch the people close to me cry.  I’ve held my husband and my children as they wept for me.  I wish I wasn’t the person causing all this sadness.