good news: take two

I didn’t need good news a year and a half ago when I wrote about the good news I received (and continued to receive) with so much caution. I was thinking about the big picture then–no matter what the news, I still have cancer. I was also feeling good and going to school. Now i’m stuck in the small picture. I feel crappy and I have graduated from school but I can’t get a job yet. I will greedily take all the good news I can get.

So I enjoy the small things, like eating ice cream on the beach with my boyfriend. Or walking to my current favorite farmer’s market. And I try to hold onto the good news I get tightly, because without it, I feel pretty pitiful.

Leading up to yesterday’s appointment with my oncologist I ran through every possible bad scenario in my head. If my tumors could be upgraded from a G-2 to a G-3, what else incomprehensible could happen? Why shouldn’t my octreotide scan, which determines my eligibility for the PRRT in Europe, also be negative? Why shouldn’t this fluid that has continued to impede my recovery also contain cancer cells trying to metastasize to my lungs? My mom brought an overnight bag up to the appointment just in case these fears turned out to be true.

These fears turned out to be only fears. My tumors may be on the aggressive side, but they appear to still have a weakness called octreotide. I am going to Europe for treatment. Bad Berka, Germany to be specific. And the fluid, though annoying, is just fluid.

I’ll take it.

I’m going to stop short of predicting a miraculous remission. But starting from a place of, “I’m not going to live through this,” a ray of sunlight is nice for a change. Even if that ray is in the old East Germany, a place perhaps not often associated with sunlight. The sunlight doesn’t stop this fluid from being uncomfortable and counter-productive and another thing to deal with before we’re allowed to get this show on the road–but it’s a problem for tomorrow, or the next day, or next week. Right now I have pretzels and flights to think about, doctors and assistants to email, and the promise of a new treatment in Germany to enjoy. And a walk to the farmer’s market.

 

I would like to take a moment to say thank you to everyone who has commented and emailed words of encouragement–these have been a hard few months and it helps to hear the support. I would also like to say my humblest thank you to everyone who has donated to my “sending me to Germany fund” so far. My sister’s pillow sales have exploded–she’s up to her knees in fleece, felt, hot glue, and pillow stuffing–and she still has more for sale. We are so lucky to know so many generous people. So far we’ve brought in almost enough for two round-trip flights! That’s more than I was expecting and every bit helps. The only thing decidedly NOT sun-filled about this treatment is its price tag.

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16 Responses to good news: take two

  1. Eduardo Cruz says:

    Glad about the news, Lindsey.
    Doing web searches right now to find some way to help you out on those air tickets. Got some mileage for Star Alliance that I’m not using anytime soon, so let’s put Lufthansa or United to work.
    Best regards
    Eduardo Cruz

  2. mixmastermike76 says:

    Ever since I saw your video to Joseph Gordon-Leavitt and then started to read your blog, I just wanted to say that I’ve been blessed by reading your posts over the last year or so. I can’t imagine how difficult it is to go through the ups and downs of living with cancer but your determination to write about those feelings and the uncertainties that come with every day has been nothing short of inspiring.

    I hope that the new treatment options in Europe will cause a breakthrough towards one day living without cancer.

    My prayers and thoughts are with you. Have a wonderful day!

  3. Maria says:

    Happy to hear the good news, Lindsey!! My thoughts are with you. Here’s to lots of positive thoughts and a speedy recovery from your upcoming treatment in Germany. :)

  4. cathy says:

    Lindsey I can feel your smile filled with hopeful possibities and I too smile and am so grateful that prayers are being answered on so many levels. What a visual of Sara surrounded by fleece and all the beautiful pillow fixins of love. Sending a huge hug filled with love …thank you for words.

  5. Thandi says:

    Ahh. Wish we lived somewhere ‘wealithier’ than Africa so we could help too. Feel so helpless and words feel so inadequate when someone is fighting for their comfort and life.

  6. wrm says:

    Great news!

    As I see it your plane tickets will be the most expensive part, so go for longer and take in some scenery. It’s a gorgeous part of the world. Giggle Earth tells me it’s close to Prague, where I’ve always wanted to go, and things there are so close together you can get through Austria Switzerland and France in a couple weeks.

  7. Matt says:

    Lindsey,
    Having suffered similar “accidents of life”, I can understand your frustrations on this path, yet we’re not invincible and never will be.
    So try not to focus on your cancer so much, it doesn’t define who you are and how you can enjoy life and people around you. Maybe you can’t do 100% of what a a “safe” humanbeing out there can do, maybe you can do 200% more regarding many other humans…
    Live now. Smile now. Love now. Share.
    We’ll all end up one day, you are alive.
    With much love and prayers,

  8. Sharon larsen says:

    It’s always good to hear some “good” news Lindsey! I feel your pain–literally. They thought I had fluid around my lungs too but it turns out to be abscesses from my liver surgery. I’m hoping the antibiotics work and they don’t have to go in and drain them.

    I wish you the BEST in Germany. PRRT is the most promising treatment for us NOIDS. I can’t believe how expensive it is. I hope that it gets approved by the FDA by the time I need it! Praying for you to get that fluid gone so you can go!

    Please keep us posted on your schedule! Would love to hear of your experiences while in Germany.

    • lindsey says:

      Thanks Sharon! Did you know they’re starting some phase 1 clinical trials in the U.S. for PRRT? University of Iowa is starting a program, as well as a few other places. They’re restricted depending on diagnosis and other factors, and they’re randomized, but worth looking into when you’re ready. Unfortunately none of them are available for me yet.

  9. Pam says:

    I toohave grade 3 carcinoid syndrome and I am struggling big time just to stay alive.
    I was so thr illed to find your blog and know that I am not alone.

  10. Pam says:

    thank you

  11. Wendie Tobin says:

    I know someone who has had the same treatment in Germany. It has made a significant difference in his condition. I wish you all of the best.

  12. Piggeldy says:

    I wish you were coming closer then Bad Berka (I know, I know – for Americans it would be only 300 miles, for us it’s through half the county). I would visit you. All the best for your trip!

    (You need to go to Weimar if you feel up to it! Such a lovely city.)

  13. Gary says:

    Just got back with my wife who just had 3 prrt treatments in Bad Berka. With lung primary and mets all over her body she now has about 50% reduction in disease, stable disease and considered to be in partial remission.the treatment will keep working to kill the cancer cells for a year or two with expected progression free for 3-5 years although Baums results point 84 months. everybody’s different, main thing is if the O scan shows uptake, the more the better. Cost for treatment over there is a tiny fraction of what the cost will be here once the FDA approves it ($10-$12k avg) Weimar is beautiful, Bad Berka is a nice little village. Recommend you fly to Berlin much cheaper than Frankfurt, and make sure you first entry point back in USA is home as you WILL get tagged by border patrol.! Also to rent a car which is also cheaper than trains and taxis etc. Good Luck! Have faith.

  14. Stephen Haney says:

    So happy to hear if your promising news! My thoughts are with you.

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