the waiting place

For the past almost-three months i’ve been in this waiting place of pain and discomfort, walks and T.V. shows, pills and insulin, books and crochet needles, unexplained fluid around my lungs and now in my legs, and weight loss, and weight gain.

For a time it felt like there was an end in sight–a list of problems that needed to be solved and some action that needed to be taken. Things don’t ever move quite that fast. For another time it felt like my doctors were content to leave me sitting on the couch with my feet up watching T.V. for all eternity. Then, I got the email: that all my paperwork was in order and I was going to Germany for treatment. I even had an appointment: for the end of May. Now, I have flights booked.

This is real. I am getting the treatment for neuroendocrine tumors that patients and doctors talk about with awe, in the place that they talk about with awe, from the doctor they talk about with awe. When I was first diagnosed, my oncologist said, “Well, we can do surgery, then we can try all these drugs, and we can do interventional radiology, and we can think about a transplant. Maybe someday, we’ll even have to send you to Germany.” That day is soon.

So far, the generous donations I have received from my readers, from my family, friends, and friends and family of friends just slightly outweigh the amount we have had to pay just to get ourselves (me and my parents) to Germany. Since I am not using an organized donation site this time around, and in the interest of transparency, let me give you a breakdown of the donations received thus far:

$1,383.53 from my wonderful sister Sara, Pillow Engineer, and her Etsy page

$6,346.02 from my wonderful readers, family, and friends through my PayPal donation site

$7,729.55 TOTAL

That is incredible. That’s from 26 people buying 31 pillows (Sara’s been engineering her butt off!) That’s from 36 other people giving just a little–or a lot–of their hard-earned money to help me get better, so I can make hard-earned money too someday. That’s a lot of people who care.

In the interest of transparency, i’d also like to say, though we still have about $3,000 left in donations after purchasing the plane tickets, we still need to buy train tickets, pay for lodging and food while we’re there, and, of course, pay for the treatment. Insurance may help cover part of it (may being the key word), but we’re responsible for paying everything upfront. That means we’re looking at another $15,000-$20,000 to cover this trip. And I will have to go back to receive further treatments with around the same price tag in the months or year ahead. We will know more about that once we meet with the doctor in Germany.

More help is on the way. I think i’m not too premature in saying that a few of my friends and my boyfriend are planning a benefit show for me in the coming months. Another friend is thinking about putting together some fundraising dinners. Maybe i’ll win the lottery. My sister’s pillows are still on sale, and my PayPal donation site is still up and running.

In the meantime, i’ve got less than a month til we leave. I have strength to continue to regain. Walks to take. Damn fluid to somehow vanish from my lungs and from my legs. Blood sugar to control. Pills to take. Nausea to understand. Papers to organize. Appointments to make. A suitcase to pack. Probably, a lot of T.V. to watch, books to read, things to crochet, posts to write, maybe even fun to have. I still feel like i’m waiting–but there’s an end in sight.

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4 Responses to the waiting place

  1. Sharon larsen says:

    I’d like to say “that’s great Lindsey” but it’s not great that you have to go to Germany for treatment at all but it is great that you are able to go… It is a great facility (I hear) and they will take good care of you while you are there. The hospital food is not so great so take your own snacks! Please let us know how it goes.

  2. Mark says:

    I hope you have as good if luck with the PRRT as I’ve had!

  3. Matt says:

    Sounds like a plan!

    Just don’t worry about the money too much.

    It will find a way into your life…

    Do what you need to do…when it ought to be done…whether you like it or not.

    Don’t forget to turn your mind off now & then.

    Remember to breathe…often!

    And find something to be grateful for every morning when you awaken.

    Have a great trip, Brave Woman.

  4. Cathy says:

    Lindsey the prayers and your strong intention to get you to Germany have been heard. Don’t forget to embrace all the simple things that bring you joy. Whatever they may be at the moment. Stockpile them. With your words you have created a circle of people all over the world that are keeping you in their positive and loving thoughts. Always know they are out there, no matter where you are. Sending a huge hug and as always continued prayers…..

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