Sarah’s Story

Site created on May 23, 2018

Thank you for visiting my CaringBridge site!  I started this to keep the many wonderful people in my corner updated on my journey of living with stage 4 lung cancer.  Thank you, thank you, thank you for all the love and support - it means the world to me and makes me feel stronger in this lifelong fight. 

For new visitors, I've included my full story of how I got diagnosed below. The Journal page has the ongoing updates I've been posting since getting diagnosed.  If you want to follow along, you can subscribe to this site to receive notifications when I post. 


MY DIAGNOSIS STORY
The path to my diagnosis started with a lingering, worsening cough in the winter of 2018. After several weeks, I finally visited urgent care and was told I had pneumonia.  I went on antibiotics for a few days but wasn't getting better, to the point that one morning I woke up short of breath, heart racing, and lightheaded.  The doctor took another round of x-rays that were still reading pneumonia, but sent me to the emergency room for more scans and tests because something wasn't adding up.  At the ER, they discovered that instead of pneumonia, I actually had a collapsed lower right lung caused by a mass blocking my bronchial to that lobe. The doctors first thought it was a foreign object lodged in there (what I would give for that now!) but after a bronchoscopy (basically sticking a camera down into my lung) they thought it might actually be a carcinoid tumor.  I was discharged from the hospital thinking that worst case scenario would be getting my lower right lung removed to cut out the tumor.

I had been at a small community hospital, but my good friend was a resident at Massachusetts General Hospital at the time and pulled some strings to get me an appointment with a thoracic surgeon there for a second opinion, which ended up being the biggest blessing.  The surgeon did a second bronchoscopy to get a biopsy of the tumor and saw an "ALK marker" on the pathology report, which prompted him to book me a brain MRI (standard protocol) and to loop in Dr. Shaw, a thoracic oncologist who is one of the leading specialists in the world for ALK.  I went into the MRI machine a little scared but telling myself this was just protocol.  But the next day, I got a call from Dr. Shaw that I had to come in to discuss my scans, and I learned that the tumor in my lung had metastasized and spread to my brain. I had seven tumors total, all less than 1cm.  I hadn't had any symptoms (nausea, exhaustion, loss of balance, speech issues) so this came as a huge shock to everyone, doctors included.

The doctors still didn't know what the parent tumor was exactly and wanted to do a second test to confirm that the ALK markers were positive,  so for a few days I just had to wait.  I was a ball of nerves but finally got a call from Dr. Shaw's office on May 22, 2018, when they confirmed I have ALK+ non-small cell lung cancer. 

NSCLC is more commonly seen in young, female, non-smokers and 3-5% of cases have ALK rearrangement,  which is the genetic mutation that causes the tumors to grow and spread.  In the context of lung cancer that spread to my brain, the presence of ALK is best case scenario, so it was a huge relief to get this diagnosis. Dr. Shaw has developed Tyrosine Kinase Inhibitors (TKI)s - a targeted therapy in the form of pills that I'll take every day for the rest of my life. 

Newest Update

Join me at the LungStrong 5k on May 19th in Beverly, MA!

Journal entry by Sarah Craig —

Hi everyone,

I'm excited to invite you to join me at the LUNGSTRONG 5k run/walk in Beverly, MA on May 19th!  My team is called "Sarah's Squad," and all proceeds go directly to the Massachusetts General Hospital's Thoracic Cancer Center. It would be amazing to have you join me and the team, but even if you can't make it, any donation to LUNGSTRONG is greatly appreciated!

✨Sign-up to participate or Donate to LUNGSTRONG✨

 

As for me and my health -- I've been on Lorlatinib for 6 months now, and my latest scans came back 100% clear! This medication is working wonders - it's not only keeping the cancer at bay, but it's also given me more energy and focus.  Mood-wise, I'm really good. :) 

But of course, there are always some side effects with medication.  In my case, I've experienced CNS effects (forgetfulness, confusion, slowed processing, changes in speech), high cholesterol, and loss of appetite.  The  CNS effects can make work challenging, but I have put accommodations in place to ensure I can perform my job duties.  I also go to speech therapy, which has helped not only with my word forming/finding, but also organizational strategies to help me keep on top of things at work. 

I've also explored different therapies in the past few months to address my tremor.  Last year it got to a point that the tremor significantly impacted my daily activities, from holding a cup of coffee to writing, preparing food, and even eating.  The medications weren't doing much, so I started exploring different therapies and eventually discovered neuro acupuncture.  And it's been life changing! I can hold a cup of coffee without spilling and write my name with much more ease.  Ah, the little things. :) I've continued with bi-weekly sessions and am combining them with physical and occupational therapy to further strengthen the area and improve my fine motor skills.

That's all for now - thanks for reading everyone, and thank you for your support of my LUNGSTRONG fundraiser! Whether you can join in person or donate online, it all means a lot.

Be well! xo

Sarah

Read More of the journal titled "Join me at the LungStrong 5k on May 19th in Beverly, MA! "
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