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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…

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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…

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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. Your browser does not support iframes. 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…

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