Nuking my Noggin

/ PFM

OK, they aren’t really going to nuke my head, but I am getting ten sessions of whole brain radiation starting this afternoon. I’ll back up a bit first, however. 

Last Sunday I woke up with a headache that nothing would relieve. I tried Advil, then Tylenol, then both together. Even my medical marijuana wouldn’t touch it. I contacted my neurosurgeon’s office, and they set up an MRI to see what was going on. By Thursday I learned that two of my previously treated metastatic brain tumors had started to grow once again. They could not be effectively re-treated with gamma knife because we had gone that route previously. My neurosurgeon and neuro-oncologist consulted and decided that whole brain radiation (WBR) was probably my best next step.

facemaskYesterday (Tuesday) I went in and met with Dr. Park, a radiation oncologist at Yale. He and his resident explained all the ins and outs of WBR, and once I agreed to treatment, I was fitted for a face mask. The WBR mask keeps your head positioned in the exact same spot for each treatment. It’s made of a thermoplastic mesh material that is warmed, then molded to your face while it hardens.

I’m hurriedly writing this blog post because a) I know the WBR will make me tired, and b) I know I may lose some cognitive function during and after my treatment. For those who have been following me for a while, you might remember that I originally opted for gamma knife treatment to minimize any loss of my mental faculties. On the bright side, many women I’ve talked to in my online support groups had some memory and concentration side effects from WBR that eventually resolved on their own. We shall see what happens with me. I may be writing blog posts in crayon once I’m through with my treatment.

In the meantime, I’ll be getting ten sessions of WBR. That’s one session every business day for ten days (skipping weekends and Thanksgiving). I asked about taking mematine, an Alzheimer’s drug, during treatment to hopefully reduce the cognitive effects. Dr. Park agreed and my insurance actually approved this expensive and still somewhat experimental (in treating WBR patients) drug.

My next post will probably be on the other side of WBR. Tim and I hope you all have a wonderful Thanksgiving!

27 thoughts on “Nuking my Noggin”

  4. Thank you for the update and for continuing to remind us all how fragile we are and what is truly important in this journey. Praying for you and looking forward to a good report when you come out on the other side. Note: your crayons would trump most of our best literary efforts. Big hug/much love, cousin!

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  9. Looking forward to hearing how it went on ‘the other side’ of your procedure.
    I love you Paula Ford Martin Hemhauser, few have ever touched my life as much as you.
    Love,
    Your DiabetesDad (Hell, you’re the reason I am called such)
    ❤

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  11. I am astounded at your perspective and attitude throughout this entire journey. The world is a better place with you in it and I really hope this additional treatment gives you a lot more time and leaves you fully intact.

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  12. I was so upset when I read your Blog this morning. I have prayed so much for your brain tumors not to grow anymore. All of us in Seattle are praying for you, Tim, and the boys to keep up your strength, and humor. You are my inspiration and I always see your beautiful smile and positive attitude when I think of you, which is every day. Your Dad will be holding your hands when you have your procedure. Hugs and much love coming your way.

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  13. You never seize to amaze me!! I love that you have kept your sense of humor intact through all of this. You have also kept your doctors on their toes and keep them updated on the latest treatments. If that Alzheimer’s drug works, let me know. I have someone who could use it. Keeping you guys in my prayers!

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  15. I cannot begin to tell you how proud we allll are of YOU! Your life has come into our lives and we are grateful for each moment. You have so much strength. Praying for you, your mother, Tim and family and we know that we are expecting beautiful crayon pictures…….whatever you do will help many many people. Our thoughts and prayers are with you on this journey. Nancy Wherry (close friend of your mothers)

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  20. Paula, my prayers and thoughts are with you. You continue to inspire me with your positive perspective in life. Healing love and light to you, and continued strength to your family. ❤️

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  24. Hello my dear Paula. You are so eloquent and profound. Thank you for letting us be a part of your journey. I hold you close to my heart. Sending love and energy!!!
    xox
    Theresa

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  25. I hope all is going well so far. Paula-you are such an amazing woman-my thoughts and prayers are for and with you. You never cease to amaze me in ways that are too long to list. Just take care of you and know I love, respect and so thankful for you.

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