Tuesday, November 22, 2016

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.

15 comments:

  1. What a fabulous idea. We keep hard copies but have my notes at appointments. There are many times this would have helped to have the actual reports there. I'll start looking for one now! Thanks for the great tip!

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    1. I'm so glad this might help! I'm sorry I didn't think to post sooner.

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  2. Jessica - In my binder, I keep multiple copies of a timeline, starting with the date of the onset of my husband's symptoms and chronicling his surgeries, medications, referrals and treatments. It helps new doctors get up to speed quickly on his history. Also, I tape business cards of every doctor and consultant we meet to the inside of my binder so I can easily access names and contact information.

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    1. Yes, a timeline. Exactly. That's a very helpful idea! And the business cards. You're right, I recently created a timeline (the first one in the 6+ years of my cancer journey), and I wish I would have done it sooner. At least, now, I just have to keep it updated. :) Thank you for sharing!

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  3. Wow, what helpful advice !!!! Words have power & little did the Dr. know what his words did for you.
    Wishing you, Dan & your family a very Happy Thanksgiving. May your day be filled with laughter, joys & blessings overflowing.
    Thoughts & prayers to you each :-)

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    1. Thank you Elizabeth! Isn't it amazing how wonderful a compliment can bolster one's confidence? A simple gift, very easy to give. Happy Thanksgiving to you too! :)

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  4. Hi Jess,

    Thanks for your blog. It's been a great asset. I have been watching and waiting since Feb had 4 MRIs and the tumour has change slightly compared to my first MRI. My NO is set on having surgery within a month or two. I'm concerned with hypermutation on TMZ (found this out from your blog,thanks!) but they also released a recent study http://tinyurl.com/htb65ap where patients who received radiation+chemo (combo of procarbazine, lomustine, and vincristine) on low grade gliomas have significantly higher median survival rate than radiation alone. Did the doctor state that ALL chemo triggered hypermutation or just TMZ? Thanks.

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    1. Hi Steve, I am honored and so happy that you find the blog helpful! Has your doctor recommended a F18-Dopa-PET scan to confirm that it isn't additional inflammation? Are there measurements for your tumor? Have you had a resection before? I looked at that study with a researcher friend and there are a lot of variables to acknowledge. As far as the hypermutation goes, no one really knows if all chemo agents can cause hypermutation. Let's start with the question, is your tumor methylated? Have you had a surgery or biopsy to know your pathology?

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    2. My point is that methylation status matters regarding hypermutation.

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  5. I haven’t had surgery and I am currently asymptomatic (found by coincidence). It measures 2.8cm x 2.7cm in the left temporal/insular region. When I ask about having a dopa-PET scan, the NOs say it’s just better to have it resected to find out the pathology of the tumor. So I guess I need to have surgery before anything else.

    The second NO said that I could wait 4-5 months for surgery. I’m healthy and very active but I slipped on my diet since the summer( a few too many drinks and processed foods) but I’ve been on a restricted keto diet the past few weeks and supplementing. Hopefully, the tumor will remain stable(shrink!) before my next MRI.

    I created my records folder in addition to putting , scanned records, MRIs, etc. into my phone. Lots of great information on your site, thanks again.

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    1. On your phone? Genius! What kind of app did you use? How did you get all that data accessible via phone? I can get some, not all. That is amazing!

      I am so pleased you're asymptomatic! And I understand what your doctors are saying. Pathology is paramount. I'm with you, though, I hope that your tumor shrinks (or remains stable) so that you never need to know what's in pandora's box. And I hope the restricted keto isn't punishing you too much. I jump on every once in a while, but can never maintain it.

      And I gotta throw in that I'm very impressed by your diligence, and knowledge!

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  6. No genius, and nothing sophisticated. I just snapped pics of the hard copies and organized them through iPhoto (just change it to tonal b/w filter before shooting).

    For the MRIs, I used osirix viewer included in my DVD. You can download a lite version from their website. It has a function to export the DICOM images into .mov files. Like you said, you’ll never know who you’ll run into!

    Keto has been incredible. after a rough couple of days, I feel so much better, and my mind is so much clearer (I thought it was bull) Luckily, I was never into sweets/sugary foods. I do miss pasta and rice, but the fatty foods make up for it.

    Thanks, but when you’re faced with death you’ll do (almost) anything to survive. Being proactive and learning as much as possible gives me a more positive outlook.

    Let’s beat this!

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  7. Merry Christmas Jessica, Dan and family. Wishing you laughter, joys, peace and healing.

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