• DIARY ENTRY:

    • Small update

    Posted on

    Happy New Year everyone!!!

    Since our last appointment there has been little change. Can’t wait for it to be Jan 24th so we can hear the results from my next scan!!

    The opthomolgist that I saw didn’t have great news for me- I’m suffering from a severe case of dry eyes. The ducts that tears flow through are now dried too, resulting in a build up of dead cells in them (kind of like a scab) and the best remedy is a procedure where they apply a bit of heat and basically milk the ducts to clear the blockage. It’s a simple and quick procedure that’s done in an office, and I should see an immediate difference! It’s a little expensive because insurance companies see dry eyes as a “cosmetic” problem instead of a “medical” one. Lame! But oh well, I’m looking forward to scheduling it and seeing how it goes!

    My dry mouth persists as well, but the ever-awesome Danielle has found these great little melts to help coat, moisturize and lubricate my mouth. They’re also mint flavored so they help with the constant and terrible taste of mucus that I would otherwise have lingering. So that feels more tolerable now!

    About a month ago I lost my voice. Out of no where! In the matter of 20 minutes it went from normal to a mere squeak!! And it hasn’t come back fully. It’s very frustrating and I really hope to have a voice again soon. Drinking/eating warm things helps some, but not really. 

    My scalp was still tender and achy and I was pulling out handfuls of hair any time I touched my head. I was feeling very self conscious about my hair looking thin and curling weirdly. So on Christmas Eve, about 90 minutes before my mom’s house was to be full with 40 guests, D went out to get clippers and we shaved my head! Now I’m thinking about it much less and am enjoying the weirdness that is being a buzz headed woman! 

  • DIARY ENTRY:

    • Today was a good day

    Posted on

    Almost two months after her first dose of immunotherapy, it was time for a new round of scans and an appointment with Dr. Finn at UCLA. As you all know, Megan’s had a rough last few weeks, main symptoms being dry eyeballs, low energy and not producing saliva. At last month’s doctors appointment, we were kind of just told to hang in there. With her getting better slowly, we weren’t sure what we were hoping for.

    There was one thing that we kept secret. I guess it was because we didn’t want to get our hopes up or jinx things, but we also didn’t want people to get too excited. Megan hasn’t been able to feel the tumors in her belly. If you’re just catching up on things, that’s how Megan found the masses in the first place, which led to biopsies, which then led to a cancer diagnosis. Considering that she had lost 20lbs, there was the obvious possibility that her masses have gone into hiding and weren’t able to be felt anymore. But then again, there was a small ray of hope that something major had changed.

    Fast forward to the day after the CT scan (today), we headed to UCLA to meet with Dr. Finn. After waiting nearly an hour he popped his head in to apologize and said he would be with us soon, but wanted us to know Megan’s tumor had shrunk dramatically. He then closed the door and went to see his other patient. It was a moment we regretted not recording or throwing up on FB Live.

    Needless to say we were shocked and thrilled. When he finally made his way to us, he gave the details. The large tumor, Timothy is now half the size it was at the last scan. The other sizable tumor shrank 30%. The speckles of cancer in the liver are nearly gone. He cannot explain it and he wasn’t expecting it. Needless to say he was extremely excited about the results considering that it was just after one dose of immunotheraphy (nivolumab). He explained that with immunotherapy there is so much that isn’t known. His best guess is that the treatment was a spark that jumpstarted her immune system to kick into hyperdive and kill everything off. Hopefully this will continue without having to have another dose. If it does, it just might happen that Megan and the Tims will be the topic of a paper written by the famous Dr. Finn. Now we just watch her fight those tumors.

    In other Megan news:

    • She has gained enough weight back and looks good, although doesn’t have many clothes that fit.
    • Her eyes continue to be a big problem. They are very dry and sensitive to light. Dr. Finn is going to refer her to an ophthalmologist at UCLA. She is not producing any saliva so constantly has a dry mouth and it makes it difficult to eat.
    • Megan will have another scan Jan 23 and follow up with Dr. Finn on the 24th. It is our hope that she will continue to destroy these tumors. This is the best news we have had in a long time and the best Christmas present we could hope for.

    Now tears are of joy! We are so proud of my lovely daughter/wife for her tenacity, bravery and attitude. A huge thank you to all of you for your love and support, keep those good vibes headed our way.