Second Quarter Complete: 4.0 GPA

 

Friends keep teasing me, You know you don't have to get perfect grades, right? And conceptually, I know they're right, but I have wanted to go back to school from before my diagnosis. Just before we found this BABT (big ass brain tumor), I was oscillating between combined master/PhD programs, regular masters programs, or law school. I wasn't sure, but I knew I wanted to continue my education. 

I've waited so long for this.

As I spend days, nights, and weekends, headaches, tears (both happy and sad), filled with delirious laughter, awe, and gratitude, I sink further into the gift of curiosity, of expectations, timelines, and responsibilities. I cut my teeth into new sounds, words I had forgotten. My brain feels like it's both thawing, and growing at the same time. 

A few days after this round of classes ended, I was finally able to digest the gravity of what I'm accomplishing. Well, that's not entirely true, I think it's impossible for my mind to catch the weight of this, but it feels fucking significant. I remember being in the hospital, the speech therapist at my side. She's showing me a list of words and she asks me to read the first one aloud. I stare at the page, my face flushes hot, my eyes filling with tears. I know I failing, but I don't know why. She's sad, and I don't know why. I want to make her proud of me, to make sense of these things she's pointing at. But I can't. So I cry.

Doctors at University of Washington answered my mom's question one day, while I sat quietly, Will she be able to go back to school? And the PhD said, No. She will not have the capacity. And since that day, even as I have improved, and improved, surgery after surgery, much surpassing their expectations, of both cognition and lifespan, I believed them. That's the elusiveness of accuracy that our brains manipulate, especially when there's damage involved. 

I'm not a reliable narrator, and I can see that now. I am not stupid. I'm not slow. I'm not other. I'm capable of learning. I'm capable of hard work. I have as much drive and desire as everyone else. 

I am here. I'm alive. And I'm doing it all while living with brain cancer. 

I start my first practicum this week, and my next MRI will be at the end of June. Life is full, and chaotic, exciting, exhausting, and it's mine.

15 Year Diagnosis Day

 

Fifteen years. Can you believe it? I definitely can't. 

So much has happened, so much has changed. What if I never had a brain tumor? Instead, it was a baby. I used to refer to Herman as my tumor baby because he has taken so much of my time and effort; I lost my identity and gained a new one, much like a mother. 

Fifteen years is such a long time to navigate a cancer that never goes away. I've never lived without a tumor, not since we found him. It's exhausting, and rewarding all at the same time.

When you get a life-altering diagnosis like this, never knowing how each day will progress, it's impossible to plan. It's scary and hard to live a full life, well, at least it has been for me. I've tried to reframe things along the way, always working to create a positive spin when I get afraid or sad, or lose another friend or get bad news about my health. It became a muscle for me, and it's been one of the most beautiful things I've been able to cultivate. It's something that I'm grateful for every day. 

Fifteen years. I wish I could celebrate with Udzi and Leor. I wish I could celebrate with Crush. I wish I could celebrate with Jessica. I wish I could celebrate with Marly. It feels like a momentous birthday, but no one is showing up to the party. 

Fifteen years. I should feel better than this. I shouldn't be crying sad tears. 

Living with cancer creates all the flavors of grief. They hit throughout each day, coming in waves. Some smell like freshly baked bread, or warm cookies, others hit like a hot, humid day with week-old trash. Pungent. Invoking an impossible desire to vomit. 

Fifteen years creates trillions of feelings, reflecting is hitting all at once. 

Thank you for following me along this journey. For being here in this moment in time few thought I would see. 

First Quarter Complete: 4.0 GPA

 

    

Have I mentioned I love to learn? Of course I have. I'm a happy little nerd who can find interest in all things. You know this. It invigorates my soul, and it keeps me busy. 

The difference, these days, is that I am learning for a specific purpose. I am finally using my energy toward earning a degree to officially use my experience and knowledge in oncology. 

I carry the souls I've lost. They walk with me, hold my heart, and I lean on them when I have difficulty believing in myself. I picture their faces. I cry sometimes because I wish I could live this life with them, but I know their lights exist somewhere and they're never far away. It's still sad though. The grief never leaves me. It shifts, it looks different depending on the day, but it's always there.

I absolutely did not believe I was capable of grad school. I struggle with words immensely; I can't get my brain and mouth to work together to pronounce the words I see on a screen or on a page. It's frustrating as hell. And the fatigue is real. Yet I freaking LOVE it. I haven't been this cognitively challenged in years. Yes, I have been researching brain tumor content for almost 15 years, I've learned and relearned, but this is a firehose of information, and it's not on my timeline. The pressure, the rush of the focus, the exhaustion, the joy of every second of this process, it's beautiful!

The tricks I've learned navigating grad school are wild. I use two computers at once, one for the digital textbook and the other for the paper I am inevitably writing, not to mention the mess of tabs I flit back and forth to. Then, I use my phone to dictate a word, trying to spell or verify a definition. Half the time, I find that I've created a word, usually a Frankenstein of letters, that has no intelligible meaning. I often find myself starting my day at 7:00 am, barely taking breaks until I look up, and it is 9:00 pm, and I have forgotten to eat anything or move my body. But learning is so fun! The content, the wonder, the awe, I slurp it up.

As I head into this next quarter, or whatever section of school this is, I'm excited, nervous, curious, and I'm all in.

This is the gift I give myself.

Grad School?

I can't believe I'm even writing this...but I applied to my first graduate program yesterday. 

I'm still living with brain cancer, even with a mass up there, chugging along on my IDH1 inhibitor since 6/19, but I've finally realized how resilient I am. That I shouldn't hold back on my dreams. Wow, what a concept, to just go for it! I'm great at that with cancer, now it's time to translate it further into all aspects of my life.

I know that even if I have to do more treatments, more brain surgeries, that I will be okay, and that I will always strive for more, to actualize my dreams in every moment. It's SO exciting!! 

I'm nervous as hell, but in the best possible way. The program you ask? (Oh wait, no one did, and that's ok, I'm an over share-er.) It's a Masters of Social Work, with the ultimate goal of being able to assist cancer patients more thoroughly. 

I've been counseling patients, connecting them with resources for over 14 years, and hopefully, soon, I can do it professionally. 

I can't believe I'm doing this, I kind of want to hide my face. Instead, I will smile from ear to ear, and enjoy my life to the fullest. I will take every opportunity to live and experience it all.

Please wish me luck!

Forty-Four

 

It's been a scary year. I'm starting to wonder if I might be a NYC street rat, or a cockroach, or maybe just a cat with nine lives, but someone forgot start the count. I won't bore you with the challenges, the point is that I'm still here. And I couldn't ask for a better gift!

With all of my love xoxoxoxoxo

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!! 

A Few More Steps

 

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Toot Tooting into 2023

This is a lazy way to update the blog by posting my Instagram post. I just want anyone who comes to the blog to know that I'm still here. If a person writes a comment on the blog it goes straight to my email. Other ways to check in are Instagram (clearly), which directly posts to my Facebook account. Apparently, I have 2 Facebook accounts, which can't be merged - bummer - so I don't even really know how to navigate that. 

Anyway, thank you for checking in! 

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Trauma Had Overcome Me

For the longest time, I have shoved my feelings, my pain, and my hurt to the deepest recesses of my soul. I stopped blogging because I couldn't fathom being vulnerable anymore. My own mental state was too raw, it had become too fragile, frail, even. 

I would find myself unable to respond to beautiful texts and emails, I physically couldn't budge to lift a finger to type. That doesn't mean that those words, those messages didn't haunt my psyche. I hated myself for feeling paralyzed. I hated that I would panic about my inablilty to respond to so many special, kind, loving souls that just wanted to show me love, but I was trapped in my own suffering. And one day, became the next day, which became months, then what has almost become a year, yet nothing had changed. I couldn't bring myself to respond to any of them. The trauma had overcome me, my pain was a blackness and I couldn't find even a sliver of light.

I have been sheltering myself from the trauma that I have refused to acknowledge, or feel. My coping mechanism has been to put one foot in front of the other and walk, and clean, and cook, and listen to podcasts and organize, and avoid all of my painful memories. I felt like there was no good way to address the magnitude of the 11 years of fear, stress, the bone saws that split my skull so many times, the pain in my skull that never subsides, the struggles to walk without injuring myself, that I can't see out of the side of one eye, or the numbness of my full right side, the raw ache of constant loss. Or my pathetic attempts of holding a pen, or a fork, or cut with a knife, or spell, or find words up in this messy brain. I try to hide my deficits from others because I'm embarrassed and frustrated. But it's always there, traveling everywhere I go, there is no escape, no reprieve. 

The best (cancer) friends I have bonded with, laughed with, fell in love with their strength, their brilliance, only to watch their bodies wither, holding space for the conversations about their imminent  death, the devastation of the loss of their dreams, to watch them struggle to breathe until they die. To watch my ultimate cancer soulmate have her brain get riddled with 10 brain tumors after 11 years of metastatic cancer, the pain, the fear, the defeat. The struggle to find anything that could help, until her body just couldn't function any longer. Then she was just gone. There was nothing I could do. With all of these friends, they just die and I'm left devastated, crushed and often despondent. There is so much anguish, such a loss of camaraderie, of knowingness. With all of their deaths I find myself even further isolated, which pulls me deeper into my mental lair, where I can tuck away my feelings and pretend that I'm not broken. I put on a smile, I become more vague, I brush over any hurt, and then I deflect.  

These 11 years have been a marathon of loss, and I have avoided dealing with the majority of that pain because it doesn't feel good to be sad. I prefer to pivot in uncomfortable situations, to find the good, to put things in a perspective that makes me feel positive, but there has been so much death around me, of best friends, that I stopped being able to find the good. So I shut down and went to the most basic survival mode I could think of. One foot in front of the other. Don't think too deeply. Deflect questions. Downplay my struggles. Hide my pain. Ask people more about them so that I don't have to be vulnerable. Smile. Laugh. 

It worked for several months, maybe even a year or so, but the deep pain has never gone away. In fact, it has just festered, and then I ended up feeling even more isolated because I have a real hard time asking for help, or admitting that I'm struggling. I hate to bring people down, I would rather lift them up, to make them laugh, or bake a loaf of bread for a friend, or lend an ear for what they're going through. But what I've come to realize is that the blog was this beautiful place to express myself, with zero pressure for people to read it. People can read it if they choose, but unlike initiating a conversation with a friend who may or may not be able to support my emotional needs at that time - because face it, we all have a lot of shit going on - perhaps it's time for me to get back to sharing my life for those interested in following along.

It's scary to come back here, to share my deepest, most vulnerable thoughts, the reality of what's going on with my tumor and my treatments, but I am hoping that this can be what it once was, a gift of connection with others. And a place for my raw uncensored private thoughts, and the nuances of my cancer life.

I can't say when I'll be able to respond to any messages, or comments, I really don't want to backtrack into anxiety or fear, I want to work toward a healthy relationship with openness. Thank you for all of the patience and graciousness over this quiet time. I am truly blessed with your love and kindness. The fact that anyone even cares to see how I'm doing is a beautiful gift. Thank you. I will read every comment, even if I don't respond. xo

 

11/01/2020 MRI Results

I just got my MRI results; they popped up with a "DING" in my cell phone notifications. The scan was over a week ago, and usually it takes much longer for results, so a fast turnaround dropped my heart into my tittle toe. Usually, in the medical world, the faster the results, the more concerning the situation. (Not always, but often in my experience.) 

I've been on an experimental drug, and although it clearly seems to be working, you never know when the ball might drop. I mean, I've had to hustle ever since I was diagnosed, ten years ago, so the idea of something really working is completely foreign. But it truly is working! My tumor has not grown since May of 2019. Call that what you will, but it feels like a freaking miracle!!!

For the record, I tracked this drug for over 6 years before I could access it. No joke. I have been calling and emailing the drug company to see if they participated in compassionate use yet. I watched it because although it's for a different type of cancer, the drug targets a mutation that I share. I have flown across the country a few times tying to gain access. I have tried to impress doctors, or tried to see if I could get access through mutual connections. I have turned down risky treatments, hoping for access for this safer option. I have been told that I had to do a 5th brain surgery in order to access this drug. I was told that the drug is too expensive ($25,000/mo). Thankfully, all of the hard work, the literal years and years, the doggedness, the fear, the listening to my gut when I was being pressured to tow the medical "line", are paying off. I never know how long the good new will last, but damn if I'm not going to have a glass of champagne tonight, and run in the rain in the morning!  

I'm clearly rusty with my delivery/writing skills, but I wanted to give you an update, and thank everyone for sharing this journey with us. For loving and supporting us. The next MRI will be in January or February. 

I am THRILLED to get the honor - and as cheesy as it is, it is a true honor - to get to be here, and feel sore from a workout, or try a new recipe, or laugh at my dog when she barks in her sleep. 

I still get to be here!!!! I am still here, and life is such a gift.

First patient MRI of the day, then a celebratory lap around Green Lake

Never had any sort of "cool" factor. (Ha!)

My 10 yr Cancer Anniversary

Today is my 10 year DD (diagnosis day). I know I'm not very good at sharing my health status, or managing my social media, but there is such a beauty, and safety, when you slow your external life. Not much has changed with my health, I'm still navigating cancer, and jumping through health hoops, trying to follow my intuition, and fighting for what I feel is right for me. There have been plenty of scares, disappointments, bad news, and I have turned down several treatments as I continue on this journey. Currently I'm hoping that an experimental drug will keep my tumor at bay.

I am sorry that I can't be as open as I used to be, but I want you all to know how grateful I am for your kindness, support, and patience over the past 10 years. I remember hoping for 5 years. Then hoping to survive the 4th brain surgery. I truly can not believe that I am sitting here, 10 years after being told that I had a "massive brain tumor" and that the doctor "wasn't sure if I would live."

Especially today, I keep thinking about how grateful I am to be here on Earth, in this human body, able to smell the spring flowers, to see the little sprouts popping up from our vegetable garden. I can't believe that I'm here - that I'm alive. There is so much wonder and mystery in this human experience, and I get to be here to witness and participate. What a monumental joy!

Since these are unusual times, with necessary adjustments to daily life, instead of celebrating with friends and family, I woke up at my usual 6 am, wandered toward the kitchen to start the kettle for our French press, expecting to get a few moments with Dan before he would head out for work, but instead, the house was lit by candles, with handmade cards. It was magical, and romantic, and very unexpected. He had taken the day off, to celebrate our life together. To acknowledge the hard work that I (we) have put in, the sacrifices I (we) have made, the memories that we have created, the life that we get to relish in.

As an immune compromised human, I'm scared of any threat, let alone this pandemic, so I have been in self quarantine since February. I rarely even go for walks because the few times that I've tried, there's inevitably random runners that sweat past me causing great anxiety (valid or not). But, as I was watering our vegetable garden this morning, all of a sudden there were SO many car horns! And as I rounded the corner, I saw a literal parade from my girls in the Edmonds Walking Group (see the video below). Dan barely managed to grab his phone to record part of it. These ladies are angels. I honestly don't know what my life would look like without them. I learn so much from their prospectives. We laugh, they give me a lot to think about, and they're gracious considering I'm opinionated and often naive. They have taken care of our house, and our pets, during brain surgeries. They even mended our garden, mowing the lawn, making everything better. These women treat me as an equal, and help me feel strong and capable even when I feel that I'm not. I love that we take care of each other. And as they paraded by our house, three times in a row, beeping all the way, I laughed gratefully, as my heart continued to mend from all of the hidden pain that I've tried to ignore. 

I don't know why I get to live this fabulous life, but I'm so very grateful!

Update on Isabel Bueso

Thank you so much to all of you who have spread the word about my friend Isabel's situation regarding her immigration situation. In fact, there are currently almost 200,000 signatures on her change.org petition! In case you aren't familiar with my sweet friend, here's her episode from the show My Last Days, which is how I met her in the first place. I will also post my episode at the bottom of the page.



Here's a little update...

SEP 12, 2019 — 

Isabel went before the House Committee on Oversight and Reform today to tell her story and to continue pushing for Congress to find a solution to protect her life and the lives of thousands of people affected by USCIS’ denial of medical deferred action petitions. Speaking before a panel of Congresspeople, Isabel urged “This is not a partisan issue. This is a humanitarian issue. I ask Congress and the Administration to come together and right the wrong of this change in policy.” Watch the full testimony here starting at 28:25.

Our campaign to #SaveIsabel continues to gather momentum and we are gaining the ear of many powerful people on both sides of the aisle in Washington D.C., but we still need your help to make sure that we are able to achieve our goal. Currently, members of the House are working to pass a bill to protect Isabel. We are also hoping to find a path forward that will help all families. In order to make sure we are able to get this legislation through, we ask that you please contact your Representative and urge them to support the push to #SaveIsabel.

Many thanks,

#SaveIsabel

OCT 17, 2019 — 

Senator Dianne Feinstein (D-CA) and Senator Lindsey Graham (R-SC) have introduced a new bill, S. 2612, for Isabel and her family to become permanent residents. This is remarkable and is a direct result of the public support shown to Isabel and her family. We are all grateful to Senator Feinstein and Senator Graham. Congressman Desaulnier previously submitted a similar bill for Isabel in the House, HR 4225.     
 
The support for Isabel also lead to US Citizenship & Immigration Services’ reopening the denials and reinstating the medical Deferred Action program.  However, there is still no official word on the medical Deferred Action extension approval for Isabel or any of the other 420 people who received medical Deferred Action denials in August.  A House hearing on this topic was cancelled today due to Committee Chair, Congressman Elijah Cummings' passing. We are hopeful that the hearing will lead to the resolution of the medical Deferred Action extensions by the US Citizenship and Immigration Services. 
 
Thank you again for all your help. Your support has helped us #SaveIsabel.

SAVE ISABEL!!! (Please) 

Many of you know that a few years ago I was invited to share my story about living with a terminal illness via a television show called, My Last Days CLICK TO WATCH. I was one of five others who have been valiantly trying to serve others, make a small difference on this planet while also trying to save our own lives. Tragically, we already lost Claire Wineland to the angels (CHECK OUT HER MAGNIFICENCE HERE). Now, one of the sweetest, strongest people I know, another cast member, desperately needs help to stay alive. Please read an update to her story, and sign her petition to continue to get the life saving treatment that she so desperately deserves. She and her family have done everything legally to stay here in this country to keep Isabel alive. I implore you to at minimum sign her petition, and if you have any resources to help, please, please, please let me know and I can connect you to her and her lovely family. Thank you for taking the time to read this, I am incredibly grateful to you!

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Two of my favorite people! I swear @isabel.sparkles's aura is just heart bubbles exploding from her soul. 💕💕💕

A post shared by Happy Coconuts (@jessica_oldwyn) on Aug 19, 2016 at 1:20pm PDT

(The following has been copied from her change.org page)

Save Isabel

Told that she would die by the age of 7 due to a rare medical condition, Isabel moved to the U.S. to access life-saving medication and care not available in her home country. Now she is being deported, with just 33 days notice, despite 16 years of living in the U.S. a legal resident.

Help keep Isabel in the U.S. so she can continue to access life-saving medical care.

Tweet the White House & President Trump

About Isabel

Isabel is an inspiration to everyone who meets her. She is smart, lively, lovely and full of plans. Despite being told that she would die by the age of 7, Isabel has defied the odds through life-saving medication and care. She recently graduated from college with honors and is an active member of her community.

In 2016, Isabel was featured on the popular TV series, My Last Days. To see her episode and learn more about her story please CLICK HERE.

Isabel is severely disabled - wheelchair bound with a tracheotomy. She suffers from a rare, life-threatening disorder called Maroteaux-Lamy Syndrome, also known as Mucopolysaccharidosis Type VI (MPS-6). She receives weekly day-long treatments at UCSF Children’s Hospital in Oakland, which is paid for through her private medical insurance.

About Her Situation

In 2003, Isabel and her family moved to the United States to participate in a clinical trial to treat her rare condition. Upon FDA approval of the treatment, the family stayed in the U.S., legally, in accordance with a medical deferred action status, so that Isabel could continue receiving treatment and additional medical care crucial to her health. The treatment is not available in Guatemala.

Isabel and her family have lived in the U.S. legally for 16 years. Isabel’s mother is her primary caregiver, while her father works and provides for the family. They own a home, pay taxes, are active in their community, and have complied with all legal requirements of their visa.

On August 13, USCIS denied extension of their Deferred Action Status, ordering Isabel and her family to return to Guatemala. If the family does not leave within 33 days, deportation proceedings will be initiated. Immigration attorneys are reporting similar denials across the U.S., except to U.S. military families. Lack of notice prevents the family from making any accommodation for Isabel’s care.

According to Martin Lawler, Isabel’s San Francisco immigration attorney, “Isabel and her family have followed all the immigration rules. She is not a burden to the government and has private medical insurance. It is outrageous to deport a young person with a serious illness that can only be treated in the U.S. Where has our compassion gone? USCIS should extend Isabel and her family’s deferred action status.”

SIGN THE PETITION HERE

Medical Update

Thank you for being understanding and patient! I've been very private about the status of my health, but what I'm learning is that me not blogging hasn't removed the questions, the texts, the emails. So I'm thinking it might be easier to revisit the blog updates, that way if people want to know what's going on, they can read the blog, and even comment if they choose to, but hopefully I won't be asked so many direct questions all the time. I've learned that I really value the times I get to live without my cancer always getting brought up in social situations.

Since the most recent brain surgery on 3/3/17 I have been doing regular MRIs, as we track another brain tumor. Radiation and chemo have been recommended at each appointment, but I have declined so far. Now, since I do my MRIs locally in Seattle, then upload them to UCLA's brain tumor board, the only results that I receive is the radiology report from UW. I get zero feedback from UCLA. They don't call, they don't send a report, I just read the official radiology report and compare it to previous MRI reports and make my own decision on whether or not to completely panic or not (ha!).

After reading that radiology report, I wanted to vomit. My entire heart dropped to the floor. It was scary, and I immediately believed that the tumor had grown significantly. I saw, "interval enlargement" and "additional areas" and my head started spinning.

Then I saw dan walk over to a comfortable chair with his phone. I asked what he was up to, and he said he was trying to pull up previous rad reports to compare. (He's so smart!) So I logged into my UW portal that holds all of my medical reports, and we sat there while I dictated the tumor measurements from all the previous reports while Dan wrote them down.

The MRI scans are set at 3 mm slices, so any slight movement of my head 

(which is impossible to avoid) skews measurements. 

So there is no way to get exact quantifiable results with an MRI, it's more of a window.

After comparing measurements, I felt more comfortable. It's never easy living with the knowledge that there is a mass in my brain (possibly, according to the rad report, three masses), but I also feel strongly that I am going to make health decisions based on what feels good to me, not what is expected of me. So basically I'm flying by the seat of my pants. (Kidding, but not kidding.) I'm still doing some treatments, drugs, foods, lifestyle choices, but it all has to line up with my ethos. 

So there we have it folks! A solid, raw, technical health update. Now Emma and I can get back to gardening!

2018 Update

Hi blog readers,

I took a necessary hiatus, and truthfully I’m not sure how much blogging I will continue to do in the future. I’ll have to feel it out.

I have been focusing on my brain surgery recovery. I still have various therapies several times a week, and I'm trying to enjoy my life as much as possible. I have several new deficits that I'm trying to correct, but it's a lot of work, and headway has definitely slowed.

I became very overwhelmed with this last brain surgery. In fact, there were some unexpected and damaging events that are taking me a long time to process. When I get severely overwhelmed, my whole body starts shutting down. Since I’ve been living with these brain tumors, and experiencing surgery after surgery, the stress created an autoimmune disease called Hashimoto’s Thyroiditis. From the advice of my various doctors, and specialists, I chose to stop the blog, and stop social media including emails and texts. 

Over the past several months I also had my DNA sequenced, and the most interesting finding is that I have two mutations on the same gene (one from my mom and one from my dad). These mutations are on the genes that detox stress hormones (like cortisol). Instead of being able to hear stressful things, witness stressful things, or experience stressful things, and process it out of my system, my body just keeps recirculating all the damaging hormones for weeks, or even longer. Because of these two mutations, I can feel the stress hormones in my body. I have anxiety attacks frequently, I get stress rashes, hives, and rarely sleep through the night. The circulating stress hormones do a number on my quality of life. But the most damaging aspect is that it causes the release of inflammatory cytokines that feed cancer. So anything that is negative, or hurtful, or overtly aggressive, or even perceived negativity, triggers a cycle of debilitating anxiety, and tumor growth. Stress literally kills me, it's written in my DNA.

I’m trying to mitigate my stress response, and release stressful things in my life, but I have a lot of internal fear and anxiety already. I have regular nightmares about my surgeries, and I still have a lot of physical and emotional pain. Because of all that, I have had to completely change my life.

I really appreciate those of you who have been patient and loving toward me at this time. And to those of you who voiced frustration, you are exactly why I had to protect myself from unkind, hurtful statements. 

I started this blog to keep my friends and family abreast of health developments. I could never have imagined it would bloom into a massive web presence. But at the core of this blog is just me. I’m just a woman trying to navigate her life as she lives with MRI after MRI, brain surgery, after brain surgery, after brain surgery, after brain surgery. And as if the demands of normal daily life weren’t enough, I have to find a way to remain positive in a nearly impossible situation.

I have been very fortunate to have so many kind, thoughtful, and special people that I have met along this journey. I hope to continue to blog, but I have to put my health first, even when it upsets people. I wish I wasn’t so sensitive, but so far, I can't seem to be able to adjust that aspect of my personality. I hope you can understand, and that no one takes my choices personally. 

Merry Christmas & Happy Holidays

Merry Christmas everyone! 

You, friends, are a true gift in our lives. You have supported us from the moment I was diagnosed, and you continue to lift us up as the challenges persist. My heart is full, my soul is full of gratitude! I thank you IMMENSELY!!

We feel your love, and we are sending it right back to you! 

I plan to write a post soon with a health update - sorry I've taken such a long hiatus. For now we love you, we appreciate you, we hope you are well! 

Xoxo

Triannual MRI Results

Things always change in a blink.

Yesterday I was Googling hair styles, trying to decide if I had the balls to rock shorter hair to match those little post surgery stragglers. I had no reason to believe that there were problems in my brain. I mean, ya, this dome has problems for sure, but I didn't think there were tumor problems.

Apparently, I was wrong.

Soooooo, they want me to do another brain surgery. In three months.

I'm not kidding.

Another surgery? Two brain surgeries in nine months?!?! But I don't even have a glioblastoma. What the hell is happening?

I wish you could see the look of disbelief on my face.

I'm still waiting for the written radiology report, before I truly panic. Actually, I'm probably not going to panic anyway. I mean, what's the point.

So. What do I do? I want to start with the basics: lower my inflammation, increase my anti-cancer regiment, dose up my off-labels, be consistent with my meditation, my exercise, lower my stress, and my worrying. And I kicked that mean girl out of my head. I don't know if you have one, but I do, and she's a real B. She says things like, "You don't deserve good health, you can't even function in society. You can't even have a career. You can't even have a kid. You can't even drive a car. What good are you? Look at how much help you need, you're a drain, always taking. Just give up. You don't deserve to live."

I'm serious, she's really mean.

So she's gone. Eff her. I don't have to listen to her lies. I wish I would have kicked her out a long time ago.

Anytime I get life shifts like this, it launches me to a new level of personal best. I have no idea what I'm going to learn, what I'm going to explore, or how it will all unfold, but I'm here. I'm excited. I'm curious. I have no idea why this is my path, my journey, or why these are my struggles, but they're mine to live and experience.

I wonder where this is going to take me now...

PS I'm open to suggestions. Please leave ideas in the comments section. I will be managing very limited emails and calls. And it would be really helpful to keep the information in one place to stay organized. Even if you think it's something I've done in the past, that's okay! I can't remember all of the things I've tried. Your help would be incredible. You can even post a comment anonymously.

Thank for helping me. Yet again. (Wink and a kiss.)

Triannual MRI

I've been feeling vulnerable for so long. And truly sad.

My heart has been raw.

I haven't been able to write because I couldn't pretend. The whole point of the blog has been to have an outlet. It's where I can be me, but I never expected it to grow like this, and it puts me in a unique position. Sometime this summer the blog surpassed 1,000,000 hits. 

It's flattering, and terrifying. My stomach just cramped with the thought.

With that understanding, how do I write my feelings, my hopes, my dreams, my pain, the details of my life? I mean REALLY be authentic? 

I have so much to tell, the missing links in my life. I would love to get it off my chest, to share my truth, but I can't do it. 

And it suffocates me.

It's been a very challenging year, full of heartache, and family drama. And it hurts daily. 

Maybe just stating that truth will give me some peace.

Fortunately, I've been seeing a therapist weekly for months, and months, and she's helping me navigate this dynamic life full of oddities that involve living with cancer, going through treatments, recovering from the damage from surgery, the emotional toll of facing Death all the time, the complicated family relations. And with all of that, I'm trying to stay present, and happy, while understanding that my life is not what I dreamt it would be (kids, career, driving a car, being able to handwrite, type, trim my own nails, etc.) And I'm losing too many of my cancer friends, like Crush. I mourn that loss everyday. 

Sometimes I overthink, and wonder why I'm even here. 

It's a lot of heavy stuff.

So that's where I've been. And Saturday, I have my brain MRI. I'll let you know how it pans out.

Thank you for listening, and your patience while I have been unable to write or respond. I really appreciate your kindnesss/patience!

xo

Current MRI Results

Last night we got news that my MRI scan (taken a week and a half ago) showed stable results. There's scar tissue, which is to be expected, but because of the fabulous pathology from surgery, and these results, they are not necessarily pushing radiation and chemo at this point. Yay!!!

My next MRI will be in three months, which means I'm safe to heal and continue to recover from surgery, and have some fun!

I've resorted to using my left hand for most things, and my handwriting is atrocious, but I am having so much fun focusing on what I CAN do, rather than what I can't.

When my lymphs started retreating after two weeks of antibiotics, my GP prescribed 4 more for a total of a month and a half. I'm about halfway through and these little nuggets are clearing up! So, maybe this ISN'T some sort of new cancer. Thanks for putting that in my head, Mrs Ear, Neck & Throat Dr.

When I spoke to my neurosurgeon last night about the MRI results, we also discussed the enlarged lymph nodes, and the antibiotics, then she told me about a recent patient who she had to operate on because of a brain abscess. The patient had previously undergone a craniotomy years prior. Point is, the abscess was from a severe long term sinus infection. Wait, what? That can happen!?

It looks like people who have undergone brain surgeries have increased chance of sinus infections. What if I wouldn't have read that report and asked for antibiotics? I was seriously headed for a brain abscess! Frick, that's terrifying!!! I seriously love my brain surgeon, but I DO NOT want to do another brain surgery ever again.

The swelling in the lymphs has not completely resolved, but the fact that they're abating, is huge! As my surgeon, and GP point out, lymphomas do not get smaller with antibiotics. I am so grateful that I dug deeper, that I didn't shutdown when the ENT doc cavalierly threw around the word "cancer". I hope this infection continues to resolve, and that this turns out to be a cautionary tale about personal advocacy and ownership. I wish we didn't have to work this hard to find answers, and heal our bodies, to protect our health, but no one knows your body like you do. And no one has as such a vested interest, that's for sure.

Feet in the sand today, was like coming up for air.