14 Years Later

 

I was told I would never live this long, that I would be lucky to see 4.5 years. Today, 14 years ago, I was diagnosed with a honker of a brain tumor, and four brain surgeries later, I'm still here.

It's an endless saga of treatments, research, medicine, fear, bloodwork, MRI's, seizures, new opinions, old drugs, new drugs. Living the brain tumor lifestyle, rather than fighting against it, has given me so much more insight into what might be possible.

I remember thinking, "As soon as I get rid of this tumor, I can go back to living a normal life." But somewhere along the way, I realized, I couldn't have both. I couldn't go back to living a life not centric to cancer. That in order to thrive, I had to completely evolve my thinking and actions. 

My health is paramount, my research and ever evolving wellness is a gift that I give myself.

I don't have social media, but I will post updates here, from time to time. Thank you for the love and support. 

I can't believe I'm still alive, playing here on Camp Earth. It's fucking awesome!! 

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.