Sharing Hope

An encouraging email from a dear friend this morning reminded me that if you don’t follow me on facebook, you may not know how grateful I am for your generous flow of donations which filled my LUNGevity Summit Survivor Challenge account all the way to the top and even a little bit over! I am excited to be going to LUNGevity Foundation’s International Lung Cancer Survivorship Conference in Washington, DC, April 26-28!! THANK YOU!!!

I am grateful to be blessed in so many ways, and one of the biggest gifts is my community, my circle of friends who hold me with such love. Thank you for being part of that community. I have no words for how grateful I am for you.

Yesterday my husband bumped into a teacher from back in our eldest’s elementary school days. She told him she follows this blog and prays for me every night. When he told me, I got a little teary with gratitude. I can’t tell you how many times people have said they read this blog and think of me and/or pray for me regularly. Thank you! You are making a difference!

You help me have hope! Thank you!

As my dear friend said in her email, I have opportunity to share amazing hope… here in Ottawa, in Atlanta the end of this month, at the LUNGevity conference in April, and who knows where else! Thank you for the ways you help me open up the doors!

Whirlwinds

This Family Day long week-end has felt like a whirlwind, with all three kids flinging off in varying directions at various times. Good directions, great discussions! So glad to have them home and tucked into bed. I love our conversations around the table, and also the one-on-one times. I’m blessed!

Oldest is asking profound questions. Also cooked burritos for dinner. From scratch: tortillas and all. Amazing! Middle was at Ontario Youth Parliament and is energized, ebullient, keen for next year. Joy! Youngest (among many other things) made and photographed this gorgeous cake (from scratch) for one of her friends. I’m filled with gratitude and awe as I watch them growing up!

… and I’m feeling kind of nervous about my little whirlwind of a trip to Toronto in the morning.

I feel privileged to go. I’m healthy enough. I’m going with great people. It’s well-organized. We bring important messages… and -importantly- people have said they’re coming to hear us.

Thank you to everyone who contacted their MPP! It means a lot to have you standing with us. We need a team surrounding us as we speak for so many people affected by lung cancer who can’t make it to Queen’s Park this week.

Thank you to all the MPP’s who are coming to the breakfast and taking meetings with us. I’m grateful for this opportunity. And a heartfelt thank you to Canadian Cancer Survivors Network and Lung Cancer Canada, and everyone involved in the #Right2Survive campaign.

I’ll try to tweet and post #Right2Survive as much as I can over the next two days … while also holding onto my hat! #onpoli

Quick update: tests and changes

Hi folks – it feels like a very long time since I last posted, and there is news to update you with but not much time or energy. Here is a rushed post as I’m waiting between parts of a test. Apologies: I can be wordy when I’m tired and in a hurry!

There is a new drug that will hopefully work better than the medication that I was on since last July. (I’ve now stopped taking the old one, and am coughing more and feeling joint pain as a result.) I am privileged to be part of a clinical trial which is scheduled to start Monday. This week is therefore filled with various required tests to give us a baseline to compare results. I’m taking most of them in stride, but there will be another CT scan and bone scan, and I feel a slight bit of stress about them.

My last CT scan went well: I don’t remember if I gave you an update after it, but I had a lovely time with a friend whose husband had the same test scheduled directly after mine. It was such a gift to be able to spend time with her and to be so deeply encouraged by her! I am so grateful!

In case you didn’t hear the story, they had changed the protocol for people who’d had allergic reactions to the dye they inject. So I’d been told to simply show up for the test and remind them I’d had a previous reaction, then they would give me something just before injecting me. Once I arrived, however, they said that due to new protocol, they could not administer the test and would have to send me home. (I was supposed to have taken a bunch of meds on a whole schedule starting the day before.) To make a long story short, they had mercy on me and let me go along with the old protocol (just as I’d been mistakenly told), gave me the meds and the test went fine! I’m a bit nervous about tomorrow’s CT, but hopeful that all will be well!

This afternoon’s bone scan should be fine too. I went into the hospital early this morning to be injected with radioactive material, and I’m scheduled to go back in an hour for the test. They strap you onto a bed and a machine spins around, taking amazing pictures! The only tricky bit is that the machine gets really close to the face and it can be a bit much for someone who can be claustrophobic! Last time I prayed a lot and felt very calm. I tried to keep my eyes closed and “listen” to my imaginary ipod. As long as I didn’t think too much about how close that thing was to my nose, I was fine. Every time I felt panic even hint that it was going to rise up, I prayed and felt peace. I am so thankful!

Today I’m not worried, but I am very tired! I usually do at most one thing per day and these tests make for long (for me) days. Also I’ve had to get up earlier than usual and that tends to knock me out!

So, what’s this clinical test about, you may be wondering …

One of the new drugs that has been developed for my particular kind of lung cancer is undergoing nutritional testing to see how the body absorbs it. (At least, this is how I understand things!) I am privileged to be part of this testing which will help future cancer patients get the best treatment possible. So I will be assigned to one of three groups on Friday, which will indicate what my dose is and whether I take it on an empty stomach or with a meal. (If I get to have it with a meal, they give us guidelines for what we can eat.)

I’ll have to fill in a simple daily journal (see photo), and take a bunch of tests (including spending a few days at the hospital having blood removed every hour or two), but this new drug is supposed to be really good, with fewer side effects than the previous one.IMG_5154

I was a bit worried about the days of blood tests, so I asked about the procedure. They should only have to poke me once, then leave a thing in me to which they can attach the tubes when they need more blood. Sounds easy!

Yesterday I had a bunch of blood taken and I only felt one little poke. Hardly hurt at all. This morning the technician who made me radioactive was so good that it did not hurt one bit when she poked me. Honestly, it hurt more on the way out than it did on the way in! I thanked both women for the amazing job they did. They are skilled … and kind! I am blessed to be served by such professionals!

I have been thinking a lot lately and have many stories that I could tell you, but my energy is so limited. I hope to write more frequently, and plan to once I have a little more energy.

I’m thankful for time with friends, little walks, signs of Spring, and so much beauty in this world.

Lastly, let me say that I am so grateful for the energy to truly be present with my kids, to make things and do things with / for them, and encourage them to have friends over, and teach them things, and tell them (as well as showing them) I love them. This is what really matters, and I am so thankful for all these opportunities!

Seize the day, friends, seize the day!

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