Thursday, July 21, 2016

Time to dust off the boxing gloves…here we go again.

As much as I would love to be writing and telling you all about our lovely trip back east, all the great friends we saw, food we ate, monuments we visited and steps we walked I had a scan today and in my news cycle, it takes precedent. I hope to give you a glimpse into our vacation maybe sometime next week. 

But in the mean time…I had a scan today and it was not the news we hoped and prayed for. It was not what we visualized and meditated on. It was not great news.

On the good side…the radiation did a good job to the tumors that were targeted. They are gone or smaller. However, there are 3 or 4 new tumors on the left lobe of the liver. And through the blood, the cancer spread to my lungs. There are at least 6 small (he said small many times) spots on my lungs. When he said lungs I kinda freaked out but he said not to make a big deal about the lungs. He said it didn’t matter if it was the lungs or the big toe, it’s the same gastric cancer and it is spreading through the blood like cancer does.

OK, what do we do? I gave up my job so I would not have to say, what do we do so I can go back to work in a month (that would not be possible…I’m so glad I  made that decision and have that part of my grief behind me and not colliding with this part of my grief).
Right now it looks like there are 2 possible treatment plans. One that is newer, in the immunotherapy set of drugs and the other is more typical chemo.

The one we are hoping to be able to have access to is what I’ll call the Jimmy Carter drug. As you know, cancer disguises itself as a typical cell so your immune system does not know to attack it. This newer kind of drug “unmasks” the cancer cells for what they are and it allows your own immune system to go to work. It has shown to be very effective on some cancers. The side effects are much more minimal, much less intense, much more tolerable than typical chemotherapy. The problem: it has not been approved for gastric cancer. It is approved for some cancers. It is showing signs of working on gastric cancer, but it is not yet easily available for my cancer. But, it is possible the insurance company will say yes, it might be possible to hook me up with a study and he said sometimes the drug companies will give out the drug for free (I imagine, when they work with a doc like him with so many patients, and so much experience, and they really want to get their drug out there…it makes sense. I’ll take free samples!). And I really, really like Jimmy Carter, so, there, I want what he had!

If none of those paths open for us, I’ll be on the more traditional chemo regiment again, with 2 drugs: taxol and one more I cannot remember. There will be nausea, fatigue, possible hair loss…the usual.

So, we wait and see what kind of strings he can pull, what kind of rabbit he can pull out of his hat and then we do it. We just do it and fight it again. Cuz that is what you do. That is what I do.That is what we do.

We’re off to Yakima this weekend to sip wine, walk through vineyards and wineries with some of our oldest and dearest teacher friends. It will be a great group to be with.  We've all had variations of grief; none of us have been spared. They will all have their own kind of salve to help me with my current wounds. I’m looking forward to time with these guys.

Next week, I’ll try to figure out how to post some east coast pictures and let you know when I hear from the good doctor.
Have a great weekend.
Enjoy this beautiful weather (if you are in Seattle) the rest of you may need to stay inside air conditioning! Stay cool.

Love from us to you

Janet

11 comments:

  1. HOW DO WE GET YOU THE JC DRUGS??! Up for writing letters, starting a petition, calling offices, whatever. You just let me know.

    Sending love from Baltimore. Thank you AGAIN for coming to visit.

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  2. You are forever eloquent, Janet. And if anyone can lean on the almighty cancer machine so it will vend you some drugs, it's our dear Dr. Kaplan. But some shoulder into it, Kap!

    The Mensings

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  3. Thank you Deni and Nora...yes to the JC drugs, I am hopeful that will happen! They are out there...even in this city, so someone has to figure out how to access them and I have a great deal of faith in Dr. K!

    And, Nora, we so enjoyed visiting you in Baltimore and hearing about your program. The kids of Baltimore are lucky to have you!!

    Love to you both...

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  4. (Eliza here. I have an old alias on blogspot that I don't know to get rid of. Long story.)

    Oh man, I'm so sorry to hear this. Morelli told me you would have a scan when you went back and I was praying for good results. Hoping that those Carter drugs come through. I so loved meeting you. I had a wonderful weekend with you guys and was sad to have to get on the subway going in the opposite direction. I hope you have a beautiful weekend with your friends. You're in my heart. (That "wipe"-related quote continues to resonate in my mind and make me smile.) xoxo

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    1. Hi Eliza, it was so fun to spend time and go out and play with you. You were dear to us, before we met you, simply by being Morelli's GF...but now you are dear to us just 'cause you are...we had a great time and are so grateful for your hospitality. Maybe we'll meet again soon and you can tell me the long story about L. O'Toole!
      Hope Tiffany is showing up!
      Love to you, the Butler and the babies.
      Thanks for your support and prayers

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  5. Dear Janet...YOU, of all people, are the one to gain access to the immunotherapy drug used successfully by a past president of the most powerful nation on Earth. Because YOU have such a powerful spirit. How is it that in the face of this latest news, when reading your post, You once again give US hope? I hope the stormy weather passing over Lake Chelan at this moment made a detour around Yakima. The sun should by all rights be shining where Janet O is,

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    1. Thanks Kathy, I hope the people who control the drugs feel as you do! I'm putting lots of eggs in that basket, though I know there is no guarantee with any of the options. It would sure be nice to have fewer side effects while I find out if the drugs works or not. Hope to see you soon and hope you are finding some time to relax at Lake Chelan.

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  6. Oh Janet-this journey has so many highs and lows. Thank you for keeping us updated and know we send prayers, energy and love your way. Your spirit is strong and the love of your family is a powerful thing. I hope your treatment path is as you wish!

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  7. Sending out energy into the universe to get the Jimmy Carter treatment. This one is for YOU and know it's your medicine of choice. Either way, we are with you. I'm sad about what the scan showed, but know you will get through this again.... I'm just sad you have to.... Big love to you. I hope you can feel our continued support. Hoping your weekend filled up your tank with more of everything you love and desire. We are with you!!!!! marcy, mark, malia and marley

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  8. Janet,
    Are you open to having a second opinion? If so, Mark can try to get you into SCCA/Fred Hutch.
    xomarcy

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  9. ������. Thinking hard about you today and was hoping for more of the wonderful-type news. Im sorry you have to fight again. So sorry. Viv and I wish you rest, relief and joy! I hope you figure out a way to get the Jimmy Carter drug too!! ❤️❤️❤️

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