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.

The Plot Thickens

It happened again. I caught another medical oversight, and it could prove to be huge!

For those that have been following the blog for a long time, you know that after every procedure and scan, I request the radiology and surgical notes. I review, and read between the lines, assessing if my doctors are giving me the full scope of each situation. Fortunately, this has saved my ass many times. (I've been prescribed the wrong drugs, I have had information withheld about my tumor growing, I have caught inappropriate procedures just in the nick of time, etc.)

Well, here's another one to add to the books...

My ENT's (ear, nose, and throat) office called to see about scheduling the removal of the largest of my swollen lymph nodes, to analyze if we're looking at another cancer. Before I was comfortable doing that, I asked for copies of my CT and ultrasound reports. I got the usual runaround, "Um....we don't normally do that." After some gentle persuading, I was assured the documents would be uploaded to my online chart.

And this is where it starts to get good...

I woke up, a few days ago, and sure enough the reports were available. I hungrily scoured the pages for medical clues. They start by detailing the enlarged lymph nodes. They talk about the locations, the sizes, their characteristics. Also, when they retrospectively compared my current CT scan with the images from my January brain MRI, they noticed the slightly enlarged lymph nodes. This means that this is not a byproduct of brain surgery. Then, the final curiosity toward the very end of the page, was that they started talking about my nasal cavity, and how it's infected! "Wait....what?", I thought to my self. I mean, I was feeling the beginnings of a tickle in my throat, and a runny nose, but this CT scan showed an invasive situation.

Now, at this point you might be thinking, "Goss. Why is Jess telling me this???" And trust me, I would rather keep it private, but in my research and conversations with a buddy who works in the medical field, I'm aware that a chronic sinus infection can definitely cause prolonged enlarged lymph nodes!!!! And to clear it up, it just takes some antibiotics.

I know antibiotics are a hot button topic. In fact, my own father raised us on garlic, going just shy of calling them murderous, but I kid you not, I have never loved the idea of taking a drug more in my life. What if this whole lymph node mystery could resolve this easily???

So after reading the report, I was lucky enough to sneak in the same day with my awesome GP, excited to with this new possibly. 

The main point of this post, though, is that the ENT doctor didn't catch the infection. And she should have!

It is possible, even probable, that all of this craziness is because I have been dealing with a chronic infection. I won't bore you with all the details, but suffice to say there are many factors that fell into place. Always waking up with a mild sore throat, feeling mildly congested - that kind of stuff.

This infection was not going away, and it had been a huge reason why I've been commenting for over a year about being bone tired. This kind of infection makes you exhausted, just like living with mono.

Now, before we close the case, I have two weeks of antibiotics (paired with probiotics), and thankfully we will know pretty easily if this resolves my enlarged lymph nodes. They're palpable, so feedback will be practically immediate. I realize I still could have lymphoma, but this makes sense, and it is worth a shot!

What if I hadn't requested the report? And read it? And called my GP? And requested antibiotics? (She was pretty shocked, even disappointed perhaps, that the specialist had missed something so obvious.) 

Let's really hope that in two week's time, my lymph nodes will be clear, and my system back to functioning happily. 

I share this post in the hopes that you feel empowered to advocate for your body, and your health. We might not aways know why we need copies of reports, or why we keep getting the same premonition, but try to listen. It doesn't aways make sense right away, but life is a series of puzzles. You get clue after clue, and it's up to you piece it together.

Bing wasn't impressed, either.

Lymphoma or No Lymphoma

Sorry for the delay. Tuesday we received the results of the CT scan. No large, hidden mass, however, the doctor saw concerning things in my thyroid. She said things like, "Well, maybe what's going on here is thyroid cancer that has metastasized to the lymph nodes. You need an ultra sound."  So we waited a few hours, and snuck in for an  ultrasound. Since then we were awaiting results. 

Yesterday evening, we got a call saying the nodules in my thyroid seem within the normal scope of a woman. Apparently, us women have extra lumpy thyroids.

So where does that leave us? My lymph system is still under the impression that my body is under attack. My doctor keeps bringing up a type of lymphoma, but it's slow growing, and most of the time, it's just monitored. 

Could I find out for sure, if I do have lymphoma? Yep. But, they would need to remove one of the lymph nodes to run it through tests. Thing is, I don't have it in me right now. I can't handle more pain, more needles, and cutting. Right now, I need rest. I need a break, with laughter, and naps, and distractions, and air, with exercise, and a routine. I need to detox, and breathe, go for walks, and meditate. 

I can't handle the possibility of further health problems, and I don't really believe that's what we're dealing with. I just had a fourth brain surgery. My body, from head to toe, my subconscious and mind, even my poor spirit, they have been thru the gauntlet. 

I'm still clawing my way back to normalcy, and it makes sense that my lymph system is completely out of whack.

If I start panicking, if it's too stressful to watch and wait, I'll schedule the procedure to remove one of those enlarged nodes. For now, I need to chill, and give my body some extra love. This could have gone very differently, and I am so freaking relieved! No big old tumors, yay! If I am living with a little lymphoma, so what (which probably isn't the case anyway). I'm living healthy, and happy. And, for right now that's good enough for me.

Now I can schedule my brain MRI. (Never a dull moment.)

Oh, and to clarify, the possible lymphoma, would not be related to the glioma. Also, my doctor is comfortable waiting 3 months before I have to remove a node.

So, in a nutshell, we're going to triage and we'll deal with the current status of my brain tumor, which will help me make decisions regarding treatment. Lymphs are on the back burner, but I'll keep exercising them, and hopefully all that crazy stuff will work itself out. 

Thank you for the love and support - when things get crazy, and I don't know what to do, or what is going on in my body, you guys aways lift me up, and say the nicest things. I appreciate you all so very much! Sometimes I wonder how I'm going to face these obstacles that constantly keep popping up, then I remember I'm not in this alone. So thank you!

I don't have time for health problems, this house won't paint itself!

Lymph Nodes in Full Attack

Remember that enlarged lymph node I mentioned last post? That anomaly? Well, we've been monitoring, and I've remained anxious, unsettled. Then, Monday, my GP found a second enlarged lymph node in my lower neck/chest area. Friday I was referred to an ENT (ear, neck, and throat) oncologist/surgeon, and she found a bunch more. A LOT more.

As the doc prodded, she discussed my medical history, we talked about my recent brain surgery, and how that might effect my lymph system. She also discussed lymphoma, and requested a CT scan to rule out a large tumor that could be hiding in my chest cavity.

So that's where we're at. I have a CT scan Tuesday. I'm not sure when I'll have results, but Dr said probably this week.

I'm still willing it to be some sort of wild reaction to the past three months. Maybe this fourth brain surgery kicked up some proverbial cancer dust and now I need my lymphatic system to clean out the pipes and take it away. I mean, that's what the lymph system does anyway, takes away the cellular debris, remove toxins, etc.

I'm confused, and scared, but hopeful, and curious. I'm a lot of things. 

If you have any extra, please send prayers/positive energy/anything. I'm trying not over analyze, trying not to panic, but dang if I'm not over-ripe dealing with medical stuff. I am overdue with my MRI as well, and UCLA is expecting me to start radiation and chemo this month (I haven't consented or said no). 

I'm so happy to be here, but as I've been recovering, something like this completely throws things out of balance, when I'm barely getting by sea legs anyway. 

Life is being lived minute by minute, experience by experience, breath by breath. I know that sounds melodramatic, but everything is so up in the air.

One thing is for sure, I'm not ready for ready for a full system shutdown.

Sometimes it's hard to find joy,
and that is why it's awesome to have friends with puppies. :)

Seven Years Already?

Yesterday was two months post surgery, a whopping sixty days. How is that possible? It feels like forever.

Major accomplishments include tying my shoes, putting earrings on (first time took 45 min, but I didn't give up), and most recently learning how to use scissor - that was two days ago. Still trying to master singing the alphabet, and handwritten word, among other triumphs.

I am stubborn, and continue to feed myself, and have dabbled with some makeup incidents. Needless to say, we had to get a new stain remover - we temporary brought in the big guns - for our carpet, all my clothes, and the wall. Oops.

I'm exhausted every day, but that makes sense, I'm recovering from brain surgery. (Even when I say it in my head, it doesn't seem real.) 

I stopped getting on to social media weeks ago (but am planning on posting this). I'm horrible about texting, emailing, and all forms of communication. I just don't have the energy. I really appreciate your understanding. 

On a side note for brain surgery friends, have you ever had a lymph node in the neck swell up after your craniotomy? We've been tracking one for over a month. It's hard, and not painful. It's about the size of a peach bit. My surgeon says that if it doesn't go away, or if it gets bigger, I need to get it checked out. Boo. I've never had this happen. I'm hoping it's a random immune response, but it is also scary. 

With all this stuff going on, trying to recover, and monitoring that blob in my neck. I'm just focusing on baby steps. And breathing. And books on tape. And not gripping my fork like Encino Man. 

Fun Fact: Today 7 years ago, I had my first brain tumor resection! (And now I'm four deep!)

I really look forward to feeling capable of daily life. And writing my own name. For now, I think I'll go take a little nap.

Another favorite milestone was when Dan cut my hair for me last week.
He even added in some layers. Ha! 

Truely Home

We arrived home a few days ago, and damn if I didn't sorely underestimate the transition!

The area where they resected the brain tumor damaged my sense of space, and how I perceive my body in my environment. That means that my right side of my body feels grossly, over or under estimated, depending on the moment. 

It's wild, but I see half of my body like a funhouse mirror, eerily distorted. Most of the time I pretend it isn't happening, because it's preeeetty weird. Fortunately for me, it was pretty easy to remain unaware while recovering, because although my eyesight is fine, the perception complication allowed me rarely notice my right side. While in Malibu, my environment was brand new, so I had no reference points to work with. 

It works a little like this, I don't see/perceive/feel the right side of my body, except for the rare when times I'm stimulated by a shock (walking into something), being startled (new stimuli usually during a perceived threat), or if I'm focusing intently (which somehow demands an act of coordination).

Moving home forced me to take stock of my reality, and with that, the oddities in my brain.

Traveling wasn't as bad as it could have been, as far as pain, movement, or altitude, but surprisingly, taking stock our home was rough. I can only liken it to what waking up from a coma could feel like. I didn't recognize our things, or where our things went. The sights, the sounds, the smells, sensations, were all foreign. I am relearning my own home. From the hight of our bed, to analyzing where I might find my closet, how to flush the toilet, turn on water, open a window, find a cup, or find a blanket. With all that necessary exploration comes a lot of thinking/analyzation and that brings a whole new level of exhaustion and neural pain. It's exciting to push, and grow, but it's damn exhausting too. I love having more challenges, to continue to feel alive, that's for sure, but I didn't anticipate this level remapping,

I'm taking things slowly, not taking guests per Dan's request. It continues to be a challenge to adjust to each step of our life and all the nuances. It feels like I'm living in my own choose your adventure book, blended with a sci-movie, and it's pretty far outside my own capacity to comprehend. I'm fascinated with what's happening in my brain, and body. I'm watching my writing rapidly eclipse my verbal capacity, which is exciting because it shows clear progress, but also hints that I might need to start considering some speech, cognitive, physical and occupational therapy so that I don't leave other areas of my brain behind.

We are down to pills every four hours, and the dosing is less and less. I'm shocked by the amount of pain this requires to endure, then I'm reminded by what my brain is trying process, and relearn and heal. Then it somehow makes sense. It's all part of the process.  

Life requires so much to process that I'm unable to communicate the same way that I can post, so thank you for being patient with me. I don't email, or text, or call, because it's still too much. In fact, this has taken three days for me to complete, but it's worth it. To express myself is such a powerful gift! 

I'm choosing to remain calm, to focus on what I can control, which is to be kind to myself, and to take Dan's lead. Resting, and patience, are paramount, and feel sloth-like and boring, but realistically I am aware that I have some major limitations. I believe these limitations won't effect me forever, so it's not that big of a deal, but I also don't want to go backward by overdoing things. My bigger drive is not making Dan's life harder. Every choice has a consequence, and he is the one having to pick up the pieces. Sometimes quite literally. 

Thank you for continuing to travel this journey with me! Your continued support, your love, your encouragement is absolutely integral. You guys lift me up, make me feel strong, and capable. You know just how to encourage me, make me laugh, and say just the right the things when I need them the most. I appreciate you all very, very much!

Treatment Recommendations

We haven't exactly shared our cancer plan yet, because everything was so confusing. With my brain still healing, me trying to process information, we chose to table it so that Dan and I could just breath. I wanted to be able to explain what's been happening, and make sense. 

All in all, we feel it's pretty damn good news. And who doesn't like a plot twist? 

1. The tumor areas are still remained within the same grade.

2. Dr Liau masterfully competed a gross total resection - the best possible outcome. There are still cancer cells in my brain, as my type of tumor does not grow within clean margins, instead growing little fingers, infiltrating healthy brain, but that is just to be expected.

3. There was an area where the pathologist noted "treatment effect". That was described to us as something to be seen after radiation, usually. Magically, however, as you guys know, I have not done radiation. So is causing it??? I had stopped all my treatments many months ago, and have been focusing reiki, removing negative influences, and exploring spiritually. Our radiation oncologist tells me that my brain looks I've undergone some treatment to effect the growing tumor in my brain, as if I had undergone a level of radiation - that's wild! And encouraging. It feels like hope. Do you believe in miracles? I do! I feel like I'm in the midst of a metaphysical miracle. I am on the cusp, a little speck, with so much to learn and experience. This development is profound. It's everything I've ever dreamed of! Remember how I was determined to get the MRI days before the surgery? My gut KNEW that something was different. I'm still pleased that I went through with the surgery, but the power of intuition is not lost on me. I did my MRI at a different center, that glossed over the results. It was a resurgical report that wasn't trying to measure new data, which gave me nothing to work from.

4. The Ki67, or growth rate, has actually decined. The tumor in 2012 was 7-8%, this tumor is rated at less than 5%. Things like this don't happen. Gliomas don't behave like this. I have become an anomy. It's everything I have worked for, everything I have dreamed of! Granted, my cancer has not been cured, and there is still cancer in my body, but still - do you see the significance? Something real is happening. Something tangible. Something GREAT, is happening in my body. I'm getting an immune response!! Even my gracious surgeon and radiation oncologist stated it. Just mater of fact. It's undeniable! We have it in the cells, on the microscopes. I'm not cured yet, what who knows what happens next! A tangible immune is what every patient dreams of, this is epic and I can't help but think of all your prayers, and how they elate. 

5. Some of my doctors are curious, requesting further tests, trying to see what could be going on, but I've done so many treatments, tried so many things, it's impossible to isolate the causality. Other doctors don't care, and choose to gloss over the whole mystery. 

6. Ultimately, the tumor board at UCLA, is recommending radiation and chemo, in 2-3 months. They want my brain swelling to go down. 

7. There had been three areas of tumor that they been tracking, via the MRIs. We are curious to find further info to see how the various tumors had been behaving to see what the growth patterns were. In January there was an area of increased intensity within the tumor itself, that had been lightly suggested that it was more aggressive tumor. We now know it was NOT more aggressive tumor, but seemingly treatment effect. Curious, isn't it? What if that corresponds directly with work with Maureen, my reiki master? 

I can't seem to wrap my mind around idea of starting radiation and chemo when I'm getting some really interesting, and exiting results withou actually having to go through the downsides, of those treatments. I mean, I don't know what it all means, or how it translates to my survival, but I owe it do myself to explore. Shouldn't we be celebrating, and digging into this, not sweeping it under the table? I'm not surprised, but it's sad, that I had a neuro oncologist not only pooh pooh the Ki67 changes, but he also recommended an inaccurate chemo drug (he argued with us, then we discussed with our surgeon, who confirmed we were accurate). This is not the time for auto pilot. This is my life. These choices have impacts, and coincidences.  

Thankfully, I have until May to decide on radiation and chemo, to reflect, analyze, to work on my healing, and see what is and isn't working in my life. The more I let go, and explore this journey, more I remove I negativity, stress, expectations, the more space I have for healing. It feels indulgent, and self absorbed, but I have to explore this, and give it everything I have. I have no choice, other than to choose my self. There is nothing I want more than healing.

I'm in an era of growth, of exploration. I feel like unknowing is an advantage. I don't have the answers and that feels freeing. I am learning to see the world in a whole new way. Even to look at my health in a whole new way. I am finally integrating all pieces of myself. It's science, medicine, spiritual, it's metaphysical. A few months ago, the first time of my life, I went all in. Decided that I'm open to all healing, that miracles are not finite. That we all deserve health, but we that we have to be active participants in order to receive. From that moment, it has been a snowball effect of growth and excitement. Dan comments on it all the time - we're loving this! I wish I could bottle it, even write it all down, to share all the nuances, but it's lightning speed. I can't even express myself accurately and I must be terribly confusing, but suffice to say, it all feels positive, and it's fun, and soul affirming. You must feel it in my words, in my spirit, in Dan's spirit.

I have no idea what I will find tomorrow, or the day after, I don't place things in concrete. I'm learning to let go of expectations, and learning about what "life" means to me. This the happiest I've ever felt, and yet I just had a brain surgery, I have cancer, and they want me to start treatment that will not cure me, that could cause my cancer to become more aggressive, that could kill me faster. There are no easy solutions, and if things were different, if I was different, I could easy be pretty terrified. And it's not that I'm immune to fear, but it's not my focus. I'm dumping the gunk, and I only have the energy and space for things that serve positivity, and things that heal. I want and I choose to have fun, and love on my gorgeous husband, to soak up these moments, and memories, and friendships. 

 

As far recovery goes, I have been working on this posting for days. I don't how many hours, but it has been double diggits, with spell check, guessing, and apps that predict what you're trying to say. And Dan, he's always helpful, can't discount him. I'm very fatigued, sleep, quiet are the majority of my days, but I almost aways sneak a walk in and lots of unorganized stretching. I'm working on recognizing the beauty of calm, of just being.  

I am plugging along left handed (not my regular side), my right side of my body is almost completely numb (with phantom hints of hope), and often weak. I drop things, I run into things, like it's a hobby. From the tip of my head to the bottom of my toes, I feel nothing's. The line is exactly half of my body, half my face. I drool a bit on one side but he thinks it's cute. People never know because Dan keeps me in check. My hero helps me put on a great show, taxing my limits, when I'm connecting with friends on rare occasions. They never quite see the realities. But I'm perfectly happy with that, I love the blog because people can engage as much or as little as they want. 

 

I am not safe to cook, clean, navigate most objects, handle mail, my medications, or trim a fingernail, fold anything, I still get dizzy, and dan catches me, or helps me gently so I can deep trying to gain independence. I'm crafty, though, and can disguise my deficients.  

I don't know numbers and dates, or days of the week. I can barely count, so basically it's a beautifully simple life for me, for now. Dan handles it all, and I just chill and do what I can, or laugh it off.

We have so much going on in our lives, and it will definitely be quite the transition soon when Dan gets back to work, but this past month has been one of the best times of our lives. To share this journey with the love of my life, to make such dear friends, to be completely cared for by all of you, has been one of the most beautiful things to witness. This everything I could have dreamed of, and I thank all of you from the depth of my heart. Every single one of you continue to play role in my healing, and I am deeply grateful!

On My Terms

I've been resting. I've been healing. My progress is obvious, and it's exciting!

Origenaly, while in the hospital, the speech, occupation, and physical therapists, told me that I needed to spend 2-3 weeks in acute care home where I would work 6-8 hours a day on my deficits. The worst part, I was told I would have to live on campus, alone. I remember the second their door shut and I turned to Dan. We looked at each other, and I said, "Dope." He smiled, and I whispered, "Is that okay?" 

I knew I couldn't be apart from him, not for that not during such a traumatic time. Dan and I laugh so much, we have the ability to keep things in perspective, we ground each other, and literally have fun in everything we do. There's nothing more therapeutic than my time with Dan. So I respectfully declined and said I would revisit therapy after I moved home in a month. 

I had been told from my surgeon, whom I implicitly trust, that a complete recovery was expected, but to be aware of swelling which could take sever months to recover. In my mind, her words vindicated my gut feeling, that this time should be for healing, compassion, patience, and not brow beating.

As this is my fourth brain surgery, I'm different in how I evaluate the process. I'm much more calm. I'm able to analyze what will serve me on an independent level. For me, I knew being away from Dan would dampen my soul, extinguish my light. It would actually be carmful.

So, instead of weeks working in frustration, we were cocooned with a magical beach home in Malibu. It was through a friend of a friend, but now it already feels family. We have been nurtured by everyone, even friends of friends. Each day, I get better and better, oftentimes even between naps. I started with a walker, and yesterday I walked over three miles. I no longer require assistance.

You can see in my language, in my writing, that I am fast improving. I have no fears of deficites, I have have no fear of much. Each challange is an adventure, and each opportunity is a gift. 

I have never felt so provided by the universe. From our friends, and family, holding down our home with our pets, to Dan's employers, and work buddies, the emotional support of your payers, and blog comments with pure love. All of the generous donations and gifts. We have made new friends, we have made unbelievable memories. We have found joy in the wildest circumstances, and it's because of all you! You lift us up, you nurture us, you choose to send us strength, and compassion. You are healing us. Please never underestimate your role! 

The world continues to bring surprises, and we continue to have so much fun regardless of the subject or context. Sometimes life feels like a movie, full of lessons and growth. It leaves me with hope, and recharges my soul, regardless of the ending. In those moments, as often as I can remember, I soak it up, lift my face to the heavens, with a jubilant expression, and praise God, praise the Heavens, and I thank whomever is responsible. 

Life is so damn fun!

These pictures show the milestone that is my first shower after three weeks of suture. Damn that felt good to remove and clean!!!

We Are Not Stuck

Sometimes I wonder why my lift continues to be so magical. I am so full of happiness? Why do I get to feel this way? How us it possible to me this happy? Shouldnt I be scared? Or angers?

During the lead up in LA, presurgert, I was waiting for a doctor, and while sitting in a room, I heard gurgoral sobbing, then wretch screams that could not be calmed. After a few minutes I got up, and walked over to the nurse to see if there was anything I could do. 

I was gently told that a patient had been notified of a tumor recurrence. I asked she was going to be okay, if she needed help, and the nurse reassured me that she went back and hugered her and she was with our doctor. I thanked her for sharing that hug, and hugged her too. Life is a circle of comcassion, and sometimes that's all you can do.

By the time the doctor got her settled, the office was running falf an hour late, and my rushed physician, mussled in worried I word be mad at him. I let out a laugh so loud that I even stunned myself. 

I shrinked and said, "Hey, that's life!"

We got settled it, and we got to checking in. We had never met as it was he was there to assess the safty of my surgery. To see my risks, and conduct extra blood work - things like that. 

As we reviewed my years of surgeries, the lenthly treatments, and touched on my scheduled brain surgery, only a day or some away, he stopped me and asked in awe, how I can handle this with smiles and laughter. He said wants to research people like me to learn and figure out more so help for other patients. He is aways fascinated by the differet perspectives of people, and how they analyze there situations. I told him I feel the same too! It's wild, really, wow different people see things.

He ashed it he could me some pointed questions about my attitude, and I askered him best I could. I told hi am in absoute awe that I get to be alive. And that means all of it - not just the good stuff. I choose to be happy. Because it really is a decision. I am easy to laugh, because it makes me feel good. I work hard to give people grace. And I'm easy distracted. I love making people laugh, and smile. Those two tings are my favorite things to give. And that I try to limit negativity.

I was very clear that I'm no master, but these are my goals. This is how I try to life my life. And damn if it isn't fun! 

 

World is a very special place, full of choices. Don't like your attitude? Change it. Don't like how that person treats you? Stop spending so much time with them. Feel scared? Start saying aloud, everything you're grateful for. Feeling down? Pick people that lift you up! 

I probably sound simpistic, but you just start little by little. And it requires analyzing your environment, your feelings. We are not stuck, unless we chose to be. 

I choose to be happy, and I do it because it is saving my life. That might sound confusing, but regardless of my cancer, I feel deep joy in my soul, and THAT is what I mean about healing. I can feel healed every day, in my own attiute. It's viseral, palpable, it is with intention and it's my choice.

We are alive as much we want to be. We are present as we want to be.

Rad Apt

Its some time past three am. The world peppered with dozer eager crickets gently gossiping.

We met with a raduatiopn oncolocgest yesterdar, and have been digestinging her opinion everever sence.

I opted away from radiation atleast 3 times onthis these 7 years. I am aware there are risked. I'm aware of possible humatiotations, of secondary melyglancies. If short and long term effects.   

The radiatiotion oncology doctor was a gem, though. A werd way to describe her, I'm sure, but what a wonderful woman. She was the perfect combo of information, science, reality, humor, humility, and respect.  

She feel strong that that we need to act on now while tumor murdan is low - from the surgery. The trick there is still no baruntee that it would sow tumor growth, and there will be now side effects, and later effects, and it not possible to say how severe the damage would be. Her argeue is that our tumors clearly keep protesting, aways grow back so we need to act. For me, I don't string those that too clothether. Radiation not a simple choice, nor the only, or even the most promesting.

I hear what she is saying, and I'm not ruling out, but we are meeting with our oncolog Friday, and will discuss chemo, some possible medical deivises, off-label drugs and lord only what. Maybe we would do all. Maybe we will do none. Most likely combo. 

I no idea what we will decide, but I'm in no rush. I have minimal stress about treatment. I feel in my soul a depth that I can't explain. I'm living my live with no regrets, analyzing my options, listening to my inner voice. This is my rescission to make. I can't phone this in, or copy some else's notes. I need to look at all my options, even outlandish ones, longshots, exporemtal ideas, and of corse revisit the convential combos. The answers will come, I know, so there is no need to be scared, or stress. I feel free, and content. I am alive in this moment, so I soak up each moment. 

I am still mimin 3 hour of pills, but I snooze day and night, sneaking whenever I can. I relish when I awake and I relish my naps. I love it all. That helps it when I find myself tapping away, sharing with you how I feel, analyzing my life and where I want do.

It's wild to live in a moment, or environment, where I not competely capable of major decisions, yet I have to push thro. I am heal daily, but I don't trust my mind. Thank god for Dan yet again. We discuss, he explains, we discuss, I nap, then we try again. A lot in invain. I will make dense agang, and with his patience, I feel calm, and safe. The harder this is, the more he steps up.

I wish didn't have to ask to ask him of this mich, but he never companes. He's full of graces, and compasson. The reality of what we go throug is often indescribable, but his love is never escaping me. I don't have a lot that I can take of, I need to relian dan, but I can live him grace, gratitude, smiles, and laughter. And gratefuly he is trilled with these small gifts. 

Jess Offcial Post

It's jess nere, and I am so happy to try my first post I am pecking away left finger, my right sisde is no good. My whol right body is messed up, to the pont thap oor Dan must take care of my potty. And all needs do most all. We just laught, these days, and I smile in haditude. 

Dan approved ny plan for a new post so that I could connect. Ok I need to rest, and I do, but I am a connecter. I ty to try with friends but not allmakes sensebse, I'm hoping you will understand me, and we can hulp me grow and love and live. Becasuse your comments make me feel so loved, soroted, and cared for. You encourage me, and espires me.

Just right now I ecstatic to be trying this right now!

I feel my brain grow, my soul expand. In ripe now I hear a deecate owl, so gentle, just a house rear.

I have so many insighteests, so many feelings. I feel rure joy and raditude, every second. I laugh nobsop, and oooo at my husband, ahat he has no lomit on what he will do for me. And my love and respect to him shaters expectations. I never krew I could love him more, bit I can, and I am now. 

Dan makes me feel powerful, capable, funny, sexy - and ge sill has to hive me sasppotores, for consetation, so this no small feat.  

I thank god ever moment for each moment, I scuggle softly bed, and coress his mack while he purrs med app benween meds. Be probably doesnt even know as he is easy to snooze cause he's fitred.     

Im dedicated to his happiest life. I live to make him smile, and feel my love. This time together is a dream, and gift, and is completely evolve our bond. We are our own habitat, our own rare species. 

We don't yet biw the treatment reatment, or all the things to expect - my status, what my life will look, but I have dan with me, and for now, that's all I need to know. We always choose happy, even when life is scary and uncertain. All life is unsertan, it's a so fang fun. We choose joy. And gratitude. And laughter.

I share in the blog because I can, because it's real. I don't know this is why is nine to live, but it's beautiful, and I am so happy to ne here! 

Tens of times a day I choose choices to cloose happy or be cranky. Or be sad, or bitter or elated. By I see no joy in being wasting time. Even in sadness. Sometimes I have to stop and say to dan sorry for being short, when trying to do small things I used to able to do.  And he smiles, and he hugs me, and we kiss. Life really is basic. We try to give grace, hug, thank all the time, no thing is too small. This journey is clearly dufty, but I love it too. The challenge, the exploration, and the beauty. 

I am so happy to be here on Earth. Thank for helping me facilitate this dream, of life. I am loving you.

Snake Charmer

This is Dan,

We decided to venture away from the beach today and went the opposite direction into the hills for a quick hike. It was about a 20 minute drive, which is enough of a challenge for Jess in itself, then we proceeded to walk for another 30-45 minutes. We were on our way to a lookout point, when our hike was abruptly cut short by the familiar, but still terrifying, rattle of a rattlesnake. We both have had encounters with rattlesnakes before which helped us determine what was going quickly. It was sunbathing on the side of the trail and did not appreciate the intrusion. Luckily it gave us plenty of warning and we were more then happy to simply turn around and proceed back the way we came. Jess was walking in the front (to show her independence) and did a good job of recognizing what was happening by standing still, but did not have the dexterity to walk backwards or to turn around abruptly. I picked her up (probably rougher then i intended) and pointed her in the direction we had just came from. We continued for rest of our hike without any more excitement, but did appreciate the change of scenery and the challenge of walking off road. Between the driving, hiking and the excitement of the snake, Jess was pretty drained when we got back and shortly took a nap. I think if anything, the snake was simply reminding Jess that she should not overdue things and should probably head home to rest up. If only Jess listened to me as intently as she does a snake.

 

Is This Your Brain On Drugs?

This is Dan,

During these past few days of recovery Jess has experienced some strange phenomena. She felt it necessary to describe to people what was going on even though she did not really understand it herself. Often during the night Jess has manifestations of things occurring that are not actually happening. She will have lengthy conversations with people who are not there. She will believe she had conversations with people who are there (me). She will often have the sensation of being back in the hospital. One particular time she was awaiting a blood draw and kept asking when the nurse was going to come in. Regardless of how many times I explained that she was not in the hospital anymore her questions and concerns lingered. Only once I told her that the nurse said there was not going to be any blood work tonight did she relax and fall asleep. It would appear that the trauma of being in the hospital is still very much with Jess. Getting her Blood drawn was always a source of apprehension due to the fact that she had categorically difficult veins to puncture. Because of this she would experience a tremendous amount of pain while the technician maneuvered the needle in her arm attempting to hit a vein.

Two nights ago, I woke to find her awake in bed. We spoke for a few moments and I could tell that she was not exactly 100% in the here and now, with her believing she was at the hospital again. She calmly asked me a question that quickly cleared the fog from my head and woke me up. "Are they going to hang me?" she asked. I assured her that no one wanted to hang her and she responded with another equally calm question "Am I going to hang myself?" she asked slightly confused. Again I assured her that she did not want to hang herself and that nobody else wanted to hang her either. "Then why is there a noose?' she said to me as she pointed to an area somewhere above the foot of the bed. Again, I assured her that there would be no hanging of any kind, which seemed to satisfy her, and she went back to sleep. This is the conversation I remember the most because of the strange topic, but there are many perceived conversations that she has during these odd hours on the fringe of sleep. She can remember them in the morning but needs some prompting to recall the details. Whether it is the vast amount of drugs she is taking or some new addition to her life caused by the brain surgery we are not yet sure. She is confused and fascinated by this new development. I think it stems from her curiosity. How can the brain create such vivid actions without one being aware of it?

On to a new topic..

Jess is continually getting better and better. As we expected, some things are coming much quicker then others. Her walking has improved drastically, to the point where there is hardly a noticeable mis-step or awkward stride. Uneven terrain can cause some apprehension, and the stamina of her healing brain cannot keep up with her legs, but overall it has, and continues, to improve dramatically. Her vocabulary continues to become more elaborate and her word finding problem is decreasing steadily. We are working on dexterity activities for her right hand and although improving, Jess is still operating strictly left handed. Some words and letters are slowly coming back, but they are hit or miss with no logical pattern that I can decipher. In all, Jess is taking it in stride and with a tremendous amount of grace. She is not attempting to constantly break through these barriers, but rather letting skills come back naturally as her healing progresses. This was something we had difficulty with after the previous surgeries. She felt that if she worked hard enough things would come back to her. We realized that if the brain was not ready for a particular skill it did not matter how hard you tried to learn it. It is the equivalent of breaking your leg and trying to run before the bone is healed.

Starting on Monday we begin our follow up appointments at UCLA. We will be meeting with radiologists, neurosurgeons, neurosurgeon assistants, oncologist and many more. We should hopefully get more information on the pathology of Jess's tumor. Up to this point it has been wonderful to solely be focused on Jess getting better without any other distractions or major questions looming over our heads. We always appreciate more information to help us make our decisions, but it was nice to have some time to breath. Anyway, next week we will have more information to provide you with as to what direction we will be heading from here.

As always, we appreciate everybody's support and Jess wants everyone to know that she can "feel everybody's love and prayers, and it carries me"


It does not feel like rehab when you get this as your walking path, but between walking in the sand and traversing over rocks it is a great exercise for her to get her coordination back.