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src/diary/entries/250107

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+<h1>Nothing Left But Clinical Trials </h1>
+#health #personal<br>
+<br>
+
+	<p>None of my chemotherapy treatments work. My specialist thinks a particular clinical trial is the best option for me, and I'll meet my new doctor soon. I was kind of feeling like the adventurous part of cancer was going to start up again soon, with how much I disliked FOLFOX, and maybe I was right. </p>
+
+<h2>What should I expect? </h2>
+
+    <p>I'm guessing my care team is really hoping for a good clinical trial over the third line of treatment available, so I'm guessing if this one doesn't work out, I'll get on one eventually. </p>
+
+    <p>If this is the one, I don't really know what to expect. The coordinator said I might stay there a while, depending on how the first appointment goes. It's just a few hours away, but still, it's out of state. Sheesh. I have a very clingy pet cat, poor guy. Not to mention my husband's work and all our responsibilities here. After I had to stop, my husband's pretty much the only volunteer consistently available to run cameras at church. I'd feel bad to strain their small team further. </p>
+    
+    <p>Hopefully my new treatment will be spaced out well enough (and tolerable) that I can go home regularly. It'd be so inconvenient otherwise. I've already stayed in the hospital unexpectedly for a month, though, so it's not my first rodeo. </p>
+    
+    <p>My in-laws moved in to my house then. I had paused random chores to go to a quick checkup that became a hospital admission, so they just sat there, half-finished. My in-laws were asking all kinds of goofy questions like why I keep a half-full box of random papers in the hallway. I don't! I was shredding them, and that was the only working outlet I could find. It's so inconvenient to rely on others so unexpectedly. OTL </p>
+
+    <p>Also I did the bad thing and looked at some of the medical journal publications for previous trials my new doctor worked on, and they have high death rates. I never do stuff like that, but my mother-in-law was talking about research and stuff and I felt bad about not doing that kinda thing. Eugh, never do that. Why did I do that? I never do that. Besides, obviously clinical trials don't save everyone. They are a last resort! Eugh, with all the things chemo makes my memory spotty on, I wish I could mindwipe having read those lol. Oops. Don't do what I did, guys! </p>
+
+	<h2>Pray for me? </h2>
+	
+	<p>If God took care of all the details during my unexpected long hospital stay, He'll take care of everything here on out. But specifically, the winter storms make travel even more inconvenient, so clear roads, please? And that He provides the right medicine and peace for my family and caregivers. </p>
+
+	<h2>Don't worry about anything </h2>
+	
+	<p>So I get severe allergic reactions to the treatment that worked best for me. Guinea pig stuff seems more promising than the conventional treatments currently available. I'm not controlling my cancer with anything until I meet with the new care team. And I'm in so much pain it's interfering with sleep. But what happens, happens. </p>
+
+    <p>I feel like our knowledge of things is so limited, you can't really complain or feel dread. This trial could be better than FOLFOX and get the last bit of cancer out of my colon and liver. It could go horribly, but it leads to me getting into the right medicine. Or if God doesn't intend to cure my cancer, I still trust His faithfulness through it all. </p>
+
+<pre><code>
+Rejoice in the Lord always; again I will say, rejoice. Let your reasonableness be known to everyone. The Lord is at hand;
+do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made
+known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.
+
+Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is
+commendable, if there is any excellence, if there is anything worthy of praise, think about these things. What you have learned
+and received and heard and seen in me—practice these things, and the God of peace will be with you.
+
+-Philippians 4:4-9
+</pre></code>
+
+    <p>This is about all I've learned going through cancer. It's a hard, undignifying, and uncertain path, but praising God brings peace while He covers all the details. </p>

src/diary/entries/250206

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+<h1>Getting into a Clinical Trial </h1>
+#health #personal<br>
+<br>
+
+	<p>It's been 50 days between treatments, but I'm finally starting a clinical trial! I was uncomfortable with the idea, but I understand them better after talking to friends who have been through clinical trials and meeting my treatment team. This experimental drug sounds like a good fit for me! </p>
+	
+	<p>So as a quick guide to my history so far... </p>
+	<ul>
+	<li>• Colorectal cancer diagnosis - November 2023 </li>
+	<li>• FOLFOX - 20+ treatments, then developed an allergy to it </li>
+	<li>• FOLFIRI - 4ish treatments, but ineffective </li>
+	<li>• Unnamed experimental drug - starting first treatment soon </li>
+	<li>• Teams - My local clinic and surgeon, Vanderbilt, Sarah Cannon </li>
+	</ul>
+
+<h2>Why stop FOLFIRI? </h2>
+
+    <p>I used to be wary of seeing scans, but I've since changed my stance. By now, I know what cancer feels like. I don't even need to see my scans, so when I do, there are no surprises. I can feel everything, and my doctors can see everything. At this point, refusing only leaves my husband in the dark. </p>
+
+    <p>My last scan made it clear FOLFIRI wasn't controlling the cancer. My oncologist decided to curtail the treatment cycle. She wasn't confident a third-line treatment would do any better, so it was time to seek out clinical trials. </p>
+
+    <p>The break in treatment has been really hard. During the 50 day search and application process, my cancer symptoms gradually returned, and I went from maybe half a dose of hydrocodone every 2-3 months to 1-3 half-doses daily. Without opiates, I couldn't sleep or eat anymore. </p>
+
+    <p>It's like letting my health freefall and not knowing if anyone will catch me. The temptation to wallow in the pain and pessimism has been stronger than ever through this. Scripture says, "Rejoice in hope, be patient in tribulation, be constant in prayer," (Romans 12:12) among many exhortations to wait on the Lord. It's disgraceful and such a waste of time when I forget this because He's caught me every single time. I could list so many times I've seen the Valley of the Shadow of Death, yet here I am. </p>
+
+<h2> So how did I find a clinical trial and enter it? </h2>
+
+    <p>You can find trials to discuss with your oncologist, using resources like <a href="https://learn.colontown.org/learningcenter/trials-basics/">COLONTOWN</a> and databases like <a href="https://www.clinicaltrials.gov/search?cond=Colorectal%20Cancer">ClinicalTrials.gov</a>. There's a ton, and more are added all the time. You're bound to find a few good fits to apply for, even if you want to stay relatively close to home. </p>
+
+    <p>I learned about this particular trial through my care team, though. </p>
+    
+    <p>My oncologists have been proactive and flexible. They searched for appropriate clinical trials with my specialist in Vanderbilt. Though Vanderbilt has nothing available for early 2025, Sarah Cannon did. So I began working with a third oncology team. </p>
+    
+    <p>Based on specific mutations and details about my cancer (I'm MSS, KRAS, etc), Sarah Cannon submitted me to the few matches. FOLFIRI really hurt my platelets count, so despite a 50-day recovery period, I only barely qualified for this trial. (Good call to halt FOLFIRI early!) Then I heard back a week later that I was accepted by the pharmaceutical company. </p>
+    
+<h2>What happens when you're accepted into a clinical trial? </h2>
+
+    <p>There's a waiting period for your previous chemo treatment to wash out of your body. 50 days is plenty, so I skipped this step. </p>
+
+    <p>Once I was offered a slot, I started the screening process. Blood tests, urine tests, CT scans, and everything else required by the pharmaceutical company. The following week, I retook tests I failed in hopes my numbers had improved...and I passed! (It's always good to keep your husband on edge.) </p>
+    
+    <p>I also met with the treatment team at Sarah Cannon to go over contracts and learn what to expect. </p>
+    
+    <p>With a baseline for my health established, I'm ready for treatment! Since the pharmaceutical company only needs my anonymized health and basic demographic information, Sarah Cannon acts as my go-between any time I need to contact them. </p>
+
+<h2>Are clinical trials expensive? </h2>
+
+    <p>Supposedly, they should be the same as receiving an FDA-approved treatment at home. If they require extra tests that insurance won't cover, they'll cover it instead. And obviously insurance won't cover experimental medicine, so the pharmaceutical company provides it for free. Otherwise, everything is billed through insurance as normal. </p>
+    
+    <p>As a bonus, the pharmaceutical company will also cover my hotel and gas costs. That's huge because I will be traveling very often. </p>
+
+<h2>Bonus Question: Why did I get off FOLFOX? Why can't I go back to it? </h2>
+
+    <p>Everyone asks this. FOLFOX was effective and tolerable for a year, but I had to stop when I developed a severe allergy. As great as FOLFOX was, I can't risk any treatment containing oxaliplatin again. </p>
+
+<h2>I'm excited to be starting super soon! </h2>
+
+    <p>I've been in so much pain. The first round of chemo back when I first got diagnosed brought instant relief. I'm hoping I'll get that again from the new drug. </p>
+    
+    <p>I'm not really supposed to post about the experiment online, so beyond what's freely available online, I shouldn't go into details, but I know what test group I'm in and the treatment schedule. It sounds intense, but I'm optimistic about it. And honestly, I want anything other than opiates at this point. </p>
+    
+    <p>Of course, I place my trust in the Lord over the healthcare system. It's hard, but I pray that God matches me with the treatment He'd have for me. Even if it increases the wait, I'd rather He close and open doors in His wisdom. If this isn't the drug for me, something good's bound to pop up eventually. But if I can have something that targets my condition so specifically so soon, praise God. </p>

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