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.

Half-Assed Update

Hi Friends,

Sorry for the long hiatus. To say it's been a crazy month would be an understatement. 

I've been on a few treatment wild goose chases, and some strong leads. I have about an 85-90% lock on my new protocol, pending any changes. (And there's always changes.) I can't get my fingers on everything immediately, but I'm headed back to NYC next week for a previously unscheduled treatment and meeting to address a few ideas. 

It's been a highly stressful time, but I'm still having a lot of fun. It IS summertime, after all. 

I've wanted to do an update, but things were up in the air. And, I don't really have the time to emote, or the energy to write just to write. It's been taxing, and when I wasn't scrambling, contacting doctors, radiologists, researchers, patients, I needed to decompress so that I could wake up and do it all over again.

I have no clue if this new protocol will be enough to stop the tumor growth - oh wait, I think I haven't even told you that the tumor is, by all consensus from every single one of my doctors, clearly growing again. Crap in the pants is about how I feel about it. 

I keep wanting this tumor life to be over, to not live in limbo, but oh well. It is what it is. I hadn't said anything on the blog - at least I don't think I did - but Dan and I had started the process (very premature stages) of getting approved to adopt foster children. Because I had been stable for over a year, it was a legitimate possibility. But I keep learning that my life is not really my own, and I don't have the luxury of planning. I realize typing this out that I may sound sad, but I'm not. It's just a fact. 

Each recurrence I am reminded that I need to just be grateful to be alive, to be here in this moment. That fact has to be enough for this life. Good thing I've been doing a damn good job of it. I'm still just as social, still walking with my group as much as I can, jogging, gardening, doing weekend trips with friends. It's not that bad to live in the moment, to tell you the truth. Maybe it's like those crazy fools that are adrenaline junkies. I'm not to that level, but I can appreciate their hunger.

Our lucky Independence Day jelly in FH. Those whispy little stingers. Just like life, beauty always comes with a price.

Also, I want you guys to know that when I run into people at the grocery store, or the coffee shop, and people introduce themselves, or say hello after years of not seeing each other, and they tell me they follow the blog, and that they care about me, about us, it's about the most gracious and heartwarming thing. In those moments I just want to reach out and hug people. And sometimes I do, and other times I don't want to freak them out. So thank you, for caring, and for telling me. It makes me feel incredible!

Brain Tumor Movie: Volunteers

Many of you get the Musella Foundation newsletter in your email inbox, but for those of you who aren't familiar you'll find a link on my resources page with an explanation. (Or use the link here: http://www.virtualtrials.com)

In the most recent blast, there was a film group looking for newly diagnosed brain tumor patients who would be willing to be filmed for a year or two to document their journey. They're also looking for "survivors" (I'm so sick of that term), that can help share their tricks, and experiences, to provide hope, and perhaps even direction.




I'm not going to apply, I'm already overwhelmed with all of the tumor patients that I help on a daily basis. I realized the other day, I've been trying to help everyone else, putting myself last. I love helping people, I want to make life easier for them, I want to save them. I want to make it so that their diagnosis never happened. But it is at the expense of my health. I stop doing things to make myself healthy, to make myself feel good. I get depressed by all of these serious, heartbreaking stories. I'm not cut out to handle all of this sadness, all of this stress. It's caused me to emotionally eat, I've gained weight, I'm not focusing on what's best for my body - barely exercising. There's too much stress. Imagine, that not only are you dealing with your own diagnosis, but you handle tens of others. And people don't come to me when things are good, they come to me at their worst (their mom, their daughter, their son, their father, their wife, their husband) are just diagnosed, or they're in the midst of a recurrence. They're terrified, and confused. I handle around 20-50 emails from patients a day, not including many texts, and phone calls. And as you know, the subject matter is heavy as shit. (Not literally - that's gross.)

People never realize how many patients I work with because the job is invisible. And that's fine, but when people reach out to me with questions that they can answer themselves with a quick Google search, it really piles up, and more so, it irritates me. I'm realizing that my time is valuable. That it's okay to redirect people to go do their own research, but it's hard to turn people away. I never feel right about it, but people have to be able to help themselves.

I wake up in the middle of the night thinking about patient cases - both the people I redirect, and the others that I work with as peers. There are many who work with me troubleshooting their cases and we learn together. And those relationships are healing and exciting, but those cases are quite rare. As patients we have to turn on our critical thinking. We need to find our True North. I can't provide that to you. The problem is that I'm scared for everybody, and I'm overwhelmed. I never anticipated that this blog would be such a widely used resource. It's an honor, and I'm flattered, but I didn't factor the issue of growth. I can not take on more patients, but I'm happy to answer questions about my doctors, and some of the treatments, I just need people to do their homework first. Please don't come to me with things that you could easily figure out yourself. Because of that issue, I removed my email address from the blog. If you need to get in contact with me, please comment anywhere on the blog, any post, any page. I added a tab up at the top to help people utilize my blog, how to search it for the information they're looking for (Contact Me). I'm in the process of seriously updating my Resources tab so that it's easy to understand, with images, explanations, and links. I want to do it all, help everyone, but I am hurting myself. I handle tumor correspondence from the time I wake up to the time I go to bed. I handle patient problems all weekend, it's non-stop. There are so many problems with that, but mostly, it's not fair to Dan. He never complains, but I love him so much and for the past several years, he has not come first, the brain tumor patients have.

I'm sorry I can't do more. I feel horrible about this.