Brain Radiation and a Family Dream Vacation

I should update my treatments and disease status first. Tuesday I had a CT scan and it’s mostly good news. Bottom line is my lung nodules have either shrunk or not grown and there are no new ones. There is increased thoracic adenopathy – three thoracic nodes have grown and Dr. Shin and Dr. Namadydoust plan to treat them with 15 radiation treatments. I will find out details and scheduling on Tuesday. Apparently there will also be some lung benefit to this treatment. Both doctors seem pleased with this result and are not alarmed by what did grow.

I’ve really come to appreciate how “easy” my treatments were in 2017 for my triple negative invasive ductal carcinoma. Except for some “cosmetic” issues I breezed through and it really didn’t have to change much in my day to day life. I even manage to cross the finish line of Wildflower and Ironman Lake Placid the following year.

I’m grateful there is a portal that manages all MSK communications and scheduling. I have 5 primary doctors I’m working with at MSKCC, three I’ve met with for consultations and two additional doctors I’ve only had telemedicine visits with. I have also been tasked with finding an outside endocrinologist to manage my underactive thyroid that I’ve had for years.

Dr. Traina, my breast cancer oncologist who I’ve been working with since my initial diagnosis and then followed up with a two year clinical trial. There was a close call when my diagnosis was initially a return of my breast cancer but that diagnosis changed. I am 4 years and 8 months out from my TNBC diagnosis.

When the TNBC diagnosis changed to non-small cell adenoid lung cancer (stage four) I was turned over to Dr. Namakydoust. Her specialty is thoracic cancers with a special interest in treating advance lung cancer.

When a small spot was seen on my brain I was added to Dr. Jacob Shin’s roster of patients, also. He specializes in radiation oncology and therapy. Very specialized!

I am also scheduled to revisit with Dr Lacouture, a dermatology specialist in conditions that arise from cancer treatments. I had a squamous cell carcinoma pop up on my lip earlier this year and they feel i should have closer attention as these types of cancer are more likely to return under chemotherapy treatments.

I’ve also met with an endocrinology specialist, integrative medicine department and an interventional pulmonologist.

There’s also follow ups with my regular cardiologist and some dental work that needs to get done.

And then there’s daily medication, which I fought for as long as I could but finally had to give in. The headaches and nausea and queasiness were too much for me. These all have to be taken on a timetable, I based around when I took the last one and when I ate so it takes some managing. I’m getting the hang of it and figuring out a routine.

Daily medications

There was also a spot located on my brain, just one but definitely of some concern. I was offered two options – just watch it and see if in three months time it grew or do a single dose of radiation. It could be nothing or it could be the “stage 4” of my lung cancer. I chose to act on it and on October 20 I had this contraption attached to my head and had one treatment with radiation.

Anyone need a Halloween mask?
Wasn’t as claustrophobic as I expected

In the middle of all this my family travelled to Palm Island Resort in the Grenadines for a long planned two week vacation! Let’s just say there is lots to still be smoothed out with international travel but the four of us arrived in this magical, private paradise and enjoyed two weeks of rest, relaxation and adventure.

17 seater inter-island. There was still a boat involved too
Morning view made it all worthwhile

We started planning this trip long before c*v*d and cancer interfered. There was several times we thought it wasn’t going to happen. But we got it done, my doctors all supported the getaway. We had an amazing experience and did so much – fishing, sailing, snorkeling, beaching, spa treatments and more!

Family dinner each night, so nice to get dressed up a bit
Sea to table dinner
Fresh catch dinner again

Full disclosure – I felt great as the trip started but definitely had some fatigue set in as the days went on and I would go back to the room to rest a bit before happy hour and dinner. A few headaches scattered in but Tylenol seemed to help. There was nothing I missed except maybe overdoing the alcohol and food 🤣🤣🤣.

On the flight home on Saturday night a full blown out of control headache landed, along with fatigue and nausea. I spent Sunday and most of Monday on the couch How severe was the pain — does punching the couch and crying score? Does wondering if this is the trade off for my treatment and if so, is it worth it? Is this how it feels to be dying? There was some pretty dark moments but once I started dosing with the dexamethasone I got pretty rapid relief. Dr Shin feels the radiation treatment may have caused brain swelling exacerbated by the flights. I have another MRI scheduled in NYC on Wednesday but feel much better.

Sleep has been a struggle. After my 4th treatment on December 9th we can stop the carboplatin which will stop the need for the steroid dosing. My treatment will continue with Keytruda and Pemetrexex every three weeks for potentially two years.

So, with all this laid out, I hope all my friends and family understand where we are at and how much there is to manage and schedule. We have our moments of fear but are trying to stay focused on the positive. Thank you for all your support, it truly means a lot!

And try to understand that random person you see wearing a mask may not be a “c*v*d crazy”, they may be trying to protect themselves from the flu (which I caught in spite of precautions and a vaccine) or the common cold because of a weakened immune system. Putting a mask on while you talk to them or just taking a step back might sow some consideration and cost you nothing.

Life is good!

13 Replies to “Brain Radiation and a Family Dream Vacation”

  1. Keeping you in my thoughts and prayers to become strong and healthy and run, biking, and swimming in no time. Your the strongest and bravest woman I have ever met. 💕💪🏽

  2. Moira,

    It’s all so much.. You are so focused & so organized. All of your built up strength & positively are what carry you through the harder moments. Never, ever give up.

    Thrilled you were able to enjoy your beautiful family vacation!

    You are loved & cared about by so many of us. ❤😘

  3. Keeping you in my prayers! Glad you all were able to get some much deserved and much needed vacation and quality time together in during all of this. You are a true warrior! xoxo

  4. I am sure you are so tired of hearing how brave you are – but you are an amazing warrior in this journey you are and will continue to amaze me with your strength! God bless you & keep your faith- you are a hero to so many. Happy Holidays to you & Brian.

  5. God bless you Moira! You continue to be in my prayers and Pete and I think of you and Brian often. Sending love and prayers❤️

  6. Moira so glad you were able to enjoy your vacation, Keep up the positive attitude. You are a fighter, let’s just say this is a LONG Ironman!! Praying for you. Thanks for the update, ❤

  7. MOIRA,
    you continue to amaze me on a daily basis. CHEERS to more treatment and more good news I’m so happy ypu had a glorious family vacation. KATHY

  8. Moira,
    You are always on my mind and in my heart. I loved seeing your adventures on the island and seeing you happy warms my soul. You are so strong and resilient and hope you know how much you mean to me. Keep fighting and know I will always be in your corner.

  9. Moira, Your bravery and honesty in sharing your journey is outstanding. I am so glad your vacation plans were not ruined and helped you create some wonderful memories. Continue to remain strong and brave as you face this challenge. Sending wishes that you will beat this beast.

  10. You are continually in my prayers. You are a “poster child” for navigating through cancer. ❤️ Just like Kaitlyn. ❤️ I know a job you both never wanted but your positive attitude, humor, perseverance, transparency and resilience is amazing. I don’t think I ever told you how much joining your club helped me through some of the toughest times in my life. I didn’t do triathlons but you included me anyway. I enjoyed walking, biking and swimming with your group and met alot of super ladies. Thank you for all you do! I pray you breeze through the next treatments and the next chapter of your story. 🙏

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