I Choose To Find Happiness

I've been hiding things from you. 

Bad things. MRI things.

Unfortunately, it appears as if there are three tumors growing now. 

Dan and I have known for a week, but I wasn't ready to vomit this awful news onto you. I realize, because of my own life, that we can only handle so much suffering. We can only handle so much pain, and I never want to be a burden on your soul. That is the last thing I would ever want to give you. Weight.

I only want to fix things, to make people feel better. Even in the grocery store, on the sidewalk, on a phone call with a girlfriend, I look to make someone smile or laugh - to connect. Sometimes it's a challenge, but nothing gives me more satisfaction, than trying to make a situation/attitude better. Not that I'm without mistakes, or poor choices, but I am trying every day to do what I think is right.

It's after midnight, but I can't sleep. I stopped all current treatments because I don't trust or understand what's going on in my body. Treatments can actually initiate tumor growth; there is no easy path. No solid way to address this problem. There are no easy answers. I have not given up hope, I'm just recalibrating. We're hunkering in, planning, looking for educated information, looking to add more professionals to our team.

I have Emma asleep on my legs, and Bing on my chest. I feel connected, three heartbeats. I never REALLY thought this would kill me, or that it would get worse, although it's exactly what the scientific literature has been telling me. I even said to Dan recently, "It's possible that my positive thinking may have been denial." - As these tumor/tumors have been gently penetrating my brain. 

I'm not planning on dying anytime soon, though. Why would I?

Between filling out the tens of pages of patient intake forms for the various new doctor appointments scheduled for next week, I took a 30 min for a bath at noon. I poured a few cups of Epsom salts, dipped a foot, eased, and settled. I found myself lifting my dripping arms from the water (knobby knees sticking out of the shower tub), hot tears running down my face, "Thank you Universe. Thank you God. Thank you for blessing me with so many experiences, for the joy, for the laughter for the connections, for the fresh air, for the EVERYTHING." I added that I am open to all the goodness that the universe brings, and that I am open for healing. That final statement is new. It's a new open door, that I didn't feel worthy of. Why should I be healed when I already have so much? How many gifts does a girl deserve? Surely, I have hit my max already.

I don't know how this world works. I have only my own compass, and my education from others. I am trying to do my best, in the situation I am in. I am laughing with Dan daily. Teasing and connecting with friends deeply. That's life, it's simple, yet profound. It's love. 

I have our sweet animals cuddling me right now, as Dan sleeps in our bed. I can hear his gentle snoring, what a glorious sound! Tonight is a rare occasion, because we always go to bed at the same time, but I fibbed because I needed to cry and I wanted to shelter him. I thank God for the luxury of a guest bed. This beautiful man who gives, and gives, who's love shows zero boundaries. 

I am unwell, but I am not dying. I just need to heal. I will be dead when I'm dead, and I'll deal with it then. For now, I raise my soaking arms to the heavens and give thanks for everything I'm allowed to experience!

Even the shittiest task can be fun. (That was us in the MRI waiting area.)
Choose to be happy, it feels better.

Poof.

My friends keep dying.

Smattered between the 50% off holiday spam emails, are updates from caregivers telling me about loss after loss. Then the upside, the lucky ones if you can call us that, they're coming to me with notices of recurrences, and declines, and paralyzations, and sadness. It's surgeries, and radiation, with chemo complaints. It's all heavy. It's always heavy.

So much sadness.

I am not a timely communicator anymore. I've come to dread my phone, and my computer. I hesitate to connect. I'm a conduit for information, this blog, but it's not without an obvious toll.

Thank you for being patient with my lack of responses to emails, to texts, and unfortunately, I don't see an improvement in my behavior, for clear reasons. I don't want to get swallowed by the sadness, so I must protect myself. That means cutting away on many occasions. Or for long periods of time. And it often means everyone, not just cancer related.

I was blindsided by this diagnosis, and have managed because I've methodically taken one step after the other. I have no idea what I'm doing. I'm just doing the best that I can, in the situation I'm in. I have zero capability to disconnect, or compartmentalize. I just don't have that talent. And for a girl lacking in the department, this muddled, cancer vortex, can completely disintegrate the heart at the soul of the girl.

I want to know what's going on with my friends, I want to fix it all, I want the hurt to go away for everyone. But's not fixable. Not by my hands. So, instead, I grieve like they do, and wish things were different.

Just after Christmas, my longest running brain tumor friend passed away. She and I had the same diagnosis. Even a very similar pathology. The difference? The location of the tumor. I had no idea she was dangerously close to death. And that's what it is in my world. One minute they're here, and the next they're gone. Poof. We're a highly vulnerable bunch.

My friend's lives are sifting through the slats of my fingertips.

I don't write much these days because it would be much the same thing. If I write, I feel, and sometimes, the only thing I want to feel is my love for Dan. And I cling to it tightly. He's my safe place, my lair, my battery charger; my blanket, and my umbrella. He's the halls that reverberate my laughter.

To all of you, to those who will read this, and for those who might not, I love you all. I think about everyone often, I pray for people, and send them love from my heart to theirs. I might not call or text much, or respond even, to your messages, but I love you no less. I'm just doing the best that I can.

So I'll have a good cry for M, and then I will wash my face, put on some layers, and walk that last Christmas gift down to the post office for a tardy mail.

I'm not sure when I'll write again. (Thank you for understanding.)

With love,
Jess

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.