My Biggest Medical Asset

I have something that will help the cancer patient in your life, something that has been helping me for years. Why didn't I think of sharing this sooner? I've eluded to it, even directly recommended it, but I've never included (that I can remember) a true description with photos. I've been sharing this info one-on-one with patients and caregivers, but for whatever reason, it didn't occur to me to officially write something on how I stay organized in the wild wild world of cancer.

Any large accordion style briefcase will do. The more slots, the better.
Spring for heavy duty, this thing will take a beating with the amount of use it will get.

I get copies of every medical record, and I carry this with me to all of my appointments.
I have saved many a headache, and lots of time, during meetings
because I have my own copies of my various pathologies, radiology reports, etc.

This is a mini case that has its own slot in the big case.
It holds every single one of my MRI and F18-Dopa PET scan disks.
I'm able to pull out any disk that I need, in a matter of seconds.

It's astounding how helpful these disks have been in appointments.
It has been common, in my experience, that new doctor appointments often
 do not receive my records in a timely fashion. By carrying all of my document and disks with me,
I don't get held up with delays or partial information from my doctors,
because I'm able to provide the data for review and assessment.

This briefcase has been worth its weight in mom's cookies. Recently, at a new neuro-oncologists's meeting, the doctor even asked what I do for a living. I replied, "This." He responded by saying, "Want a job?" For a woman who has disabilities, who struggles with epilepsy, exhaustion, the uncertainty of surgeries, treatments like radiation and chemo constantly looming - let alone all of the other off-label, technically experimental, medicines - this housebound woman often feels inadequate, less worthy, low functioning, and non-contributing. I struggle with those emotions on a daily basis. To have someone of authority, like a doctor, give me such a beautiful compliment, it was priceless. I'll bet that doctor has no idea how powerful his words were and continue to be.

This briefcase system is brilliant! I was skeptical at first, but it has truly brought me much more insight, and opportunities. Once you set it up, all you have to do is keep it current. It's also a great spot to put new research, and copies of your med lists, etc. If you have something similar, or if you have any ideas to add to the conversation, please comment below. I am where I am today because of tricks from patients/caregivers. I learned about this concept from others, it had never crossed my mind to put my hard copies in a briefcase. I thought my file system was sufficient. But it wasn't. Having all the documents at hand in appointments, or brainstorming sessions, has been paramount.

Why Reinvent the Wheel? Copy This System!

• Call/fax/go to the medical records department and request copies of every single document (and continue to do so for every additional appointment).
• Buy an accordion briefcase and disk case.
• Create an ongoing timeline of medical appointments. 
• Create an ongoing list of medications. While on those drugs, note side effects, etc.
• Do the same thing for supplements, and various treatments you try.
• Print up new copies of updated documents and bring them to appointments.

I had the opportunity to head to San Francisco, to check out the biotech company, Notable Labs in Dec of 2014. While touring the facility, there happened to be a prominent researcher who studies my type of tumor. I was introduced, and he asked me what type of tumor I had. I responded, "Diffuse astrocytoma, would you be interested in reading my pathology?" His eyes grew wide, and stood to reach the printout. When he saw my mutations, and nuances of the tumor pathology, he asked me if I had ever done chemo. Before I could get the word, "No" across my lips, he boomed, "GOOD." This guy wrote some of the most influential papers in my cancer world, and here he was reviewing my medical decisions. That affirmation, was vindicating, and had I not been carrying my pathology report, I wouldn't have received a free, spur of the moment, evaluation (by the guy who coauthored a paper on hypermutations in LGG). You never know who you're going to run into. Be prepared.

I am forever grateful to those who turned me on to the idea. I hope that their kindness lives on, through me, and helps you.

A Lauren Taylor Illustration

Look what came in the mail, from the brilliantly gifted illustrator, Lauren Taylor!  (Click on her name and explore her website.)

This image, this moment, I remember it like it was yesterday, and yet, in the same thread, it feels like several lifetimes ago.

Earlier today, when I was cooking dinner, a wave of shock, and gratitude came over me. You'd think I'd get used to his love, but it still surprises me. Like a stupid cliche, but it's not stupid, and it's not a cliche, it's my life. I was thinking about how deep my love for Dan is, and how mutual the bond. If I never get to fulfill my dream of being a mother, or if I never fulfill my dream of further education, or even a fence around our property, I am and have been loved by a man that treats me kindly, who cherishes me, who hears me, who fulfills my every need, and so much more. I could never have dreamed of a love like this, because I had no concept of the enormity.

Oh, to have a piece of art to celebrate the most profound aspect of my life, the bond with his soul. What an honor for Lauren to gift us this. I am in complete awe of this young woman. I think you might be too, if you check out her amazing YouTube videos. Get to know her a little, she's dynamic, and full of compassion - let alone talented.

EASTSIDE STORIES

EASTSIDE STORIES on YOUTH

EASTSIDE STORIES on HOME

UCLA Tumor Board Results

Dang it if brain tumor life isn't confusing. At least in my world! I can't be the only one who has these types of yoyo results. I mean, it's better to have differing results than a truly horrible, obvious situation. The ups and downs, though are insane. 

If you don't want to watch the whole video (3 min 44 sec), the short is: tumor is growing, albeit slowly. (Think millimeters.) I believe the two treatments I added in the past two months, are helping - who knows, maybe the tumor had grown more in the interim, and now they're even shrinking it? Who knows! I rule out nothing.

My neurosurgeon at UCLA offered a brain surgery to remove whatever she can, or she said she is "comfortable" waiting 2-3 months for another stealth (pre-op) MRI. I opted for the latter, and agreed that if I had furthering symptoms, I would move up the scan.

Some people might think I'm crazy to push-off brain surgery, since I have a growing tumor in my brain, but there are inherent risks involved. Remember when I had to learn how to walk, talk, read - learn the alphabet again?! I do. We will never know for sure if the decisions that we make are the best ones, but a decision is what we have before us. For now, we try to do the least invasive approach. If that isn't enough, we will evolve as we always have.

It's confusing because the symptoms of my seizures are the same symptoms that tumor growth would cause. The main take away right now is that it's important for me to stay the course on exactly what I'm doing treatment-wise, and perhaps even add a few non-toxic, whole body health boosting things. And I really need to lower my stress levels. They directly cause extra seizures, and that makes diagnosing possible tumor growth, very difficult.

With all that being said, I should go to bed. I have a big day planned with a bunch of friends tomorrow. We're doing a nature hike in an old growth forest. I'm so excited! I'll be sure to hug some trees for all of ya. ;-)