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Support Karen’s Spinal Cord Injury, Cancer, and Transition of Life Fund

Help Karen Fill Her Remaining Time on Earth with Comfort, Dignity, and Love

Updates (3)

January 31, 2025

Weeeee! we're up to 29% thanks to $300 in donations this week. Thank you to those of you who donated!!So, what happened in my life this week? it was a normal week filled with medical appointments, calls with the attorneys about disability insurance and social security disability status. we hope to have positive updates from both next week . Social Security if approved won't start until at least May and no back pay. We don't know yet if disability insurance will give me back pay- hopefully it will! if it does that goes back to mid-november.  ?Rides got all messed up this week and I finally had a wheelchair van driver who recognized my address rescue me after waiting for 2 hours for the driver who was supposed to pick me up. Bobbie was super nice, gave me his card and let me know if it happens again to give him a call because he doesn't live too far. I get rides to medical appointments through the state insurance plan. indiana sucks on a few levels but i gotta' admit the state insurance is pretty good.Monday's appointment with the radiologist was really informative! he showed us (me and the friend who came with) all of the scans- brain & spine. he explained them so well. basically it's all over the meningea. there's a big pocket in the sacral, all up & down the lumbar and has settled into the pockets around the ears and eyes. that's what's causing my vision and hearing problems.We decided to do another brain mri and compare it to the one that was done on new year's eve. that will give us an idea of how fast it's progressing in the brain. if it's slow that will buy us a little time to see if the immunotherapy is helping. if it's aggressive we'll go ahead and do whole brain radiation. he said that whole brain used to be the standard for decades until they perfected targeted. if the tumor inside my spinal cord at T1 starts to effect mobility we can do targeted on that if i want. we can't do whole spine radiation since we've already done radiation & T7/8. side effects of whole brain should be fairly mild- short term memory loss like "where are my keys? where'd i leave my handbag". of course there's always the off chance it could be worse but we're not going there. i'll lose my hair but like chris said "karen, how much fun will you have with wigs!" and chris is right.sorry if that was confusing.Wednesday I saw the oncologist, mom & donna met me there. We're going to do a PET scan after my immunotherapy infusion the end of March. this is the scan that we'll look at to see if the immunotherapy is working. If it's not doing what we want it to do, slow down the progression, stop the progression or miracle of miracles get rid of some of the cancer cells, we'll talk about other options. i don't know what those options might be at this point because he doesn't talk about them until we get to that point. i appreciate that about him. I also had my 2nd immunotherapy infusion that day. we're a month behind on those because i couldn't get my 2nd while i was in the hospital getting the colostomy.Thursday was an infusion at the pain clinic, ketamine. i have to switch providers on that because I need to have medicare as my primary and right now medicaid is my primary with medicare as secondary. i've been trying to find someone who knows how i can petition for medicare to be the primary. our state fssa office currently isn't taking calls. 

January 22, 2025

Thank You, Thank You, Thank You! It’s been a whirlwind of phone calls and appointments since I got out of the hospital on January 6th. Before I dive into the details, I want to take a moment to thank each and every one of you for your incredible support. Thank you for the donations, the shares, and your kind words! So many of you have called me a superhero, and while I’m humbled (and a bit intimidated) by that label, I believe most of you would handle this just as I am if you were in my shoes. At the end of the day, I’m just a girl living with a spinal cord injury and cancer, trying to learn all I can and navigate life with grace. The Hospital Stay So, what happened during my hospital stay? Well, we knew from an MRI that there was a mass on my sigmoid colon (the end of the colon). I hadn’t had a productive bowel movement for two days after my first immunotherapy treatment. It would be 2 weeks before I would see my oncologist's PA on December 27th. She sent me straight to the ER. A CT scan confirmed the mass, and I met with a colorectal surgeon who admitted me to the hospital so I could start colonoscopy prep right away. Since I hadn’t eaten solid food that day, I began the prep that night. Unfortunately, the next morning, they couldn’t even get a pediatric scope in due to how restricted my colon was. That meant more prep—four days of nothing but that lovely liquid. During that time, I experienced several episodes of lightheadedness while transferring to the bedside commode and even passed out once. After that, I was put on hydration IVs. I also learned that when you’re paralyzed, vomiting is no fun—you can’t rush to the commode like able-bodied folks! (Laugh or cry, right? Haha!) By Tuesday, they attempted the colonoscopy again, but my colon was still too restricted to complete the procedure. The mass had to be removed and biopsied. Thankfully, the biopsy results came back negative—it wasn’t cancer! It turned out to be diverticulitis, which was a huge relief. I honestly don’t remember if it was two or three days later when I had surgery, but we decided to go with a colostomy instead of reattaching the parts, given my current condition and what’s ahead. After surgery, I was placed on a low-fiber, low-residue diet. Let me tell you—this diet is the complete opposite of everything I’ve ever learned about eating healthy! Thankfully, I’m now back to a fairly normal diet, except for corn (which, as my friend in Georgia pointed out, is a real tragedy for a Hoosier like me—haha!). Moving Forward I’ve been cleared to start physical therapy and will resume sessions at NeuroHope in February. After almost 11 days in the hospital and with the tumors in my spinal cord, my legs have lost a lot of strength. A few times, I’ve forgotten how much has changed and made slow, ungraceful descents to the floor while transferring out of bed or to the commode. Thankfully, no injuries! I have a follow-up with the surgeon on January 24th, and I’ll see my oncologist to resume immunotherapy on January 29th. Missing my second infusion while in the hospital set my treatment schedule back by a month. Unfortunately, the headaches have worsened, likely due to the cancer in the meninges. Despite that, I’m doing OK! Through it all, I hold firm to the belief that everything happens for a reason and that something good comes from every challenge. Thank you for being part of my journey. Your love and support keep me going!

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Guestbook

March 23, 2025

Meeting Karen changed my life completely and led me to love. There’s no way to thank someone for that gift. Sending peace to you.

Lealey Brown

February 2, 2025

From Brenda's mom Diana Latham.
Sending prayers for you for strength.

Diana Latham

January 9, 2025

Best wishes to my birthday buddy!

Spitznogle Nora