healing – braintumorlife

Making a Case for God

Apparently, God does not need me to do PR work on His behalf, by taking away my brain tumor so I can praise His name from the mountain tops. I’ve asked. I figured that if I could tell people that I prayed and God took away the brain tumor, restored my brain to perfect health simply because I had faith, then I’d make a pretty good case for His existence. God didn’t play along.

I had been reading the book, “The Sermon on the Mount,” by Emmett Fox, never having read the Sermon on the Mount that Jesus gave, documented in the Bible. I felt that I could grasp the concept, or at least my interpretation of Emmett Fox’s interpretation, that human beings are created perfect in God’s image, and that our own limiting beliefs and thoughts create how we see ourselves in the world. Our negative beliefs about ourselves manifests sickness and disease. It then follows that if we align our thoughts and beliefs with God’s truth about ourselves as perfect beings, as through prayer and gratitude as well as being mindful of our thoughts about others and ourselves, then we will manifest perfect health.

I began practicing prayer with the intent of manifesting, with God, my brain as completely healed. Believing that God has removed the offending tumor and restored me to perfect health. I became mindful of my thoughts of others, and corrected any criticism or judgment of others or myself as they came up. I asked God to relieve me of my judgemental thoughts and my muscle movement symptoms. I prayed with gratitude in my heart for the abundance and love of God.

A mere few days after I wholeheartedly began this practice, my involuntary muscle movements were completely gone! It was a miracle! The twitching, spasms, clenching, and sometimes wild movements of the muscles in my neck, shoulders, arms, hands, and even in my face and jaw, that I had been afflicted with for at least four years, had suddenly ceased. Aches and pains caused by the semi-constant muscle contractions melted away. A new sense of calm and ease washed over and through me. I was euphoric, and devoted myself all the more to prayer, right thoughts, and gratitude.

This reprieve lasted for nearly a month. One day, as suddenly as they stopped, the torturous muscle clenching returned at a heightened level. I was crushed. My faith and trust had failed. God had abandoned me and I didn’t know why. The brain tumor must still be there, pressing on my brainstem, threatening to grow and wreak even more havoc.

I began sinking, retreating into my dark mind of fear and worry. Once again staring into the abyss of the unknown, again realizing that I have no control. I allowed myself a couple of days to wallow in disappointment and self-pity.

I woke up a few mornings later and decided to rise above the part of myself that wanted to rail against God for not doing MY will! For not answering my prayers, my bargains, for not rewarding me for my good thoughts and deeds. Instead, I prayed that I may have enduring faith, no matter the conditions I find myself in. I may not like what is happening to me, in me, but without faith and trust in whatever plan God has for me, life would not seem worth living at all. I would be mired in my self-pity and anger.

A large part of my adult life has been about surrendering to the reality that control over my life is an illusion. This required me to search for something bigger than my own will that I could trust surrendering control to. To find and build faith in God. I choose over and over to surrender my will to God, to have Faith without hard evidence. Quite simply put, having faith just feels better!

By the way, I have correlated the relief of my involuntary muscle movements to the side-effect of an increase in a medication which was prescribed to help me sleep. The contractures returned as I was weaning myself off the medication (as it was not effective in helping me get to sleep). When I increased the dosage again, the involuntary movements were again alleviated, though not completely. When I discussed this with my psychiatrist, he confirmed what I had suspected from my own experience. Apparently, this medication is often prescribed to people with Huntington’s disease to ease their symptoms of involuntary muscle movements. It is an off-label use (not what the medication was formulated to do, but a fortunate side-effect). I am inexplicably grateful for this stumbled-upon treatment! It may not be divine intervention, but I’ll take what relief I can get!

More will be revealed. Thank you for joining me on my ride.

Harmonious Participation

I follow several brain tumor blogs and personally know a few people who are either themselves or have a loved one living with a brain tumor and what is apparent is that my case is unusual and I’m damn lucky! After two years of focusing inward, processing my anger, my fear, my self-pity, and finding my faith, gratitude, and courage, I find myself poised to look outward. I have often heard that “gratitude is an action” and that “faith without works is dead.” It is time for me to put my faith and gratitude into action in the larger community of those living with, dying from, and researching for cures of brain tumors.

That has been my intention for a couple of months, but as with most action, the question has been how to take the first meaningful step. Fortunately, a fundraiser for the American Brain Tumor Association popped up on my FaceBook news feed, giving me a simple and practical first step (literally…), right in my own back yard. The following is their mission statement, taken from their website, http://www.abta.org

The mission of the American Brain Tumor Association is to advance the understanding and treatment of brain tumors with the goals of improving, extending and, ultimately, saving the lives of those impacted by a brain tumor diagnosis.

We do this through interactions and engagements with brain tumor patients and their families, collaborations with allied groups and organizations, and the funding of brain tumor research.

Founded in 1973, the American Brain Tumor Association (ABTA) was the first and is the only national advocacy organization committed to funding brain tumor research and providing information and education on all tumor types and all age groups. For over 40 years, the ABTA has been providing comprehensive resources that support the complex needs of brain tumor patients and caregivers, as well as the critical funding of research in the pursuit of breakthroughs in brain tumor diagnosis, treatment and care.

The Breakthrough for Brain Tumors 5K is put on by the ABTA in 9 cities in the U.S. to raise funds to research for cures of 120 types (!!) of brain tumors. I am joining the walk (there’s also a run for those WAY more fit than I) in Denver on May 6th as a small part of a large community of those affected by brain tumors. In addition to the obvious goal of raising funds, I look forward to connecting with a local community of people who have their own Bob stories; as well as finding other ways to participate in the community.

This is the part where I unabashedly ask for your money! Please participate in helping all of us who rely on further research for effective treatments for brain tumors. You can join my team, BT Warriors, even as a “virtual walker” or donate (tax deductible, yay!) by clicking on this link:

http://hope.abta.org/site/TR/BT5K/BT5K-2015?team_id=37438&pg=team&fr_id=3531#.WPP1-dIrLIU

Thank you thank you thank you…. You’re friggin’ awesome!

Dawn (& my beloved Bob)

Recovering from life (a pre-Bob post)

sunset for blog

That Tuesday morning, around 10 years ago, I convinced the staff psychiatrist of something that I was not so sure was true: that I was not going to harm myself. I just wanted to go home to my condo, my bed, and my dog who I had called my ex-boyfriend to take care of, in a desperate attempt to win his sympathy, plus my dog liked him and would be happy with him should they end up keeping me for a while. Most of all, I wanted to sleep. I couldn’t sleep there, because I was afraid of the woman who I shared a bedroom with. The first night, I woke to her standing over my bed mumbling something. I didn’t close my eyes again around her for the next three days.

Going to the emergency room on the previous Friday night was not in my plans and now I wasn’t quite sure I belonged in that house. In the light of day I seemed pretty damn well adjusted in comparison to my new temporary house-mates. This will seem insensitive, but I thought, “These people really ARE crazy, I’m just depressed.” They had all been sleeping when I was admitted (with the exception of my mumbling-to-someone-no-one-else-could-see roommate), and Saturday morning, several of the residents asked if I was a new staff member.

My depression had returned with a force months earlier, but I thought I could overcome it on my own and not go back on medication. The usual symptoms snuck up on me and gradually became worse: the feeling of being totally disconnected from everyone around me, crawling out of bed as though it were a pit of quicksand, not bothering to eat or shower regularly. Checking my mail and answering my phone became almost impossible feats. Somehow, I was still able to fake it enough to get through a day’s work and to talk to my family on the phone while not letting on about my depression, but my will to make the effort began to dwindle. The hopeless thoughts were gaining on me and beginning to convince me that I would never feel well, let alone happy, again. My brain was telling me that I shouldn’t even bother trying anymore, that my depression is a vicious cycle that will never go away, that I will never feel good enough, and that it would be much easier to just be dead. The depression convinced me so completely that those were facts that I found myself looking under my sink cabinets for something fatal to ingest.

Until then, I had only fleetingly and vaguely considered suicide, so the fact that I felt like someone else actually inhibited my body and was looking under my sink for poison, scared me into calling a friend. When she answered, I could only sob, and in less than ten minutes, she was pounding on my front door. I told her that I didn’t trust myself to be alone and that I needed help. She drove me directly to the ER, where again I could only cry as they asked me a series of stupid questions. Next thing you know, I was walking across the street with a social worker to check in to a lock-down house that I guess was for mentally unstable folks. I never got around to asking.

It was actually quite a nice cozy little house, if you overlooked the locked doors and 24 hour supervision, plus we had our own cook who came in three times a day to prepare family style meals. If you ever have a mental health meltdown, I highly recommend doing so in Boulder, CO.

The staff psychiatrists were only there Mondays through Fridays, so I didn’t even talk to a doctor until after the weekend. On Saturday morning, I thought to myself, “Well Dawn, this is a great little break from life, a chance to let down your walls, get professional help, and really dig in to getting better.” After talking with a staff counselor and psychiatrist on Monday, it seemed that their agenda was to stabilize me so that they could release me, no time for digging in. After all, I was there as a guest of the state as I had no health insurance and barely any income. My goal then changed to getting out, going home, and finding a psychiatrist who actually wanted to help.

I was sprung that Tuesday, after spending just 3 short days and 4 long nights. I celebrated my freedom by walking across the street for a cup of strong, delicious coffee, then getting my dog back and going home.

Shortly after that, I was introduced to a wonderful woman who was also in recovery from life, who convinced me through sharing her own experience, as well as flat out telling me so, that I didn’t only feel hopeless, but that I actually was hopeless. That really pissed me off. I wanted her to tell me to have hope and that everything will get better.

Instead, she told me that of myself I am hopeless, and that being hopeless is the only place to start to begin to heal. In my hopelessness, I could finally surrender. By accepting my hopelessness, I could ask for and accept help, and I could ask for grace. I’ve received a lot of both.

PS – I also did find that psychiatrist, the one who wanted to help me, who prescribed me the correct medication that my brain needed, steered me back to counseling, and to whom I am eternally grateful!

Happy New Year… every day!

Raise your hand if you are looking forward to 2016 being better than 2015. You know my hand’s raised way up high, and I can guess that many of yours are as well. 2015 seemed to be a year of spiritual growth opportunities, getting WAY out of my comfort zone, and learning to have the humility to ask for help. Thank you, 2015, and kiss my ass. Here’s to surviving it and moving forward!

New Year’s Eve is generally a time of reflection of the past year, as well as making resolutions for the coming year. January 1st is a symbolic fresh start. It is a moment in time to hit the reset button. People collectively resolve to eat healthier, eat less, work out more, be better parents/children/friends, give up booze/sex/smoking/anger, be less selfish, be more selfish, etc., etc. By January 15^th, the resolutions have faded from consciousness and we settle back into our old, comfortable routines and habits. Ah, but there is always next year, another fresh start.

Why do we limit ourselves to one day a year to set intentions and reflect on where we are on our life’s journey? I used to actively and consciously reflect three times a year: New Year’s Eve, my birthday, and the date that I got sober from a terrible addiction. I also performed intermittent “spot-checks.”

Well, I heard something today that altered my thinking about this: we can choose to celebrate a New Year every day. Not the whole stay up til midnight and set off fireworks celebration, hell I can’t even stay up that late on the actual New Year’s Eve. What I can do, should I choose to make time for it, is reflect on my day every night before I go to sleep, and set intentions and goals for the day every morning. In fact, that is exactly what I’ve been mentored to do as part of maintaining my life of sobriety, but I have frankly become lazy about it. Perhaps seeing this as the opportunity to celebrate life as opposed to another chore to tag on to the beginning and end of my day, will energize me anew.

I have celebrated life a little each and every day since being diagnosed with Bob, and why not? That is his gift to me. Bob has taught me that very day is a gift, if I choose to see it that way, even the really sucky ones. Each day will string together into perhaps another year. Working on small goals every day and reviewing every evening as opposed to making big resolutions one day of the year will surely be more attainable and enjoyable.

Happy New Year, my friends, today and every day!

More will be revealed…

Dawn

Mary Oliver quote

9 Months post-Bob-discovery

Here are the latest two entries that I hadn’t posted due to lack of time and inter-webs.

December 13, 2015

In two days, a big loud machine is going to be taking more pictures of my brain. It’s like being in a giant tubular photo booth, except you can’t bring your dog, your partner, or a friend to make funny faces with while the snapshots are taken. And your head is strapped down. That’s the part I still don’t like. The noise, and not being able to scratch an itch anywhere above my chest for 30 – 45 minutes, I’ve gotten used to. You also can’t bring your camera into the room to take an awesome selfie of your head strapped down. Apparently, the magnetic field would mess up the camera… so I settled for a pic of the machine from the doorway.

2015-12-15 11.22.10

No matter how positive I feel that Bob is just hibernating up in there, I still get anxious before any appointment we have. Thank goodness I have friends to go with me… even when it means leaving my house at 7am in a blizzard (yes that happened.)

This time my doctor will be able to pull up the results right away and I’ll be seeing him just two hours after the MRI. I won’t have to wait five days like every time before this. Which is awesome, because I leave for Florida in five days from today. Also, I’m counting on the results being positive, as I’ve just quit my job, therefor my health insurance and long-term disability coverage will terminate at the end of the month.

December 15, 2015

I want to kiss my neuro-surgeon! Not that he’s done anything on behalf of the termination of Bob other than look at his pics and give me his very well-educated opinion about them, while making me feel like a character on Grey’s Anatomy. It’s just that his opinion took a significant turn with this 9-month MRI. Bob is just the same as he ever was (bonus points if you get the song reference in that sentence). However, Dr. Levy has now decided that Bob may never grow or if he is growing, it’s at such a slow rate that it may never get large enough to cause me trouble. His opinion is that it is most-likely a polycytic astrocytoma, the most benign type of brain tumor, most often found in children, and that Bob may have been on this ride with me for a long time. Holy grey-matter, Batman!

Next stop, east coast of Florida! Right after my bankruptcy hearing Friday morning, but that’s a story for another time. What a week!

Starting from here

I haven’t had a chance to get online to post my last couple of entries. They have been sitting here as word documents, patiently waiting for an internet connection. Here’s the oldest:

December 10, 2015

At some point, everyone I know has realized that their life has not turned out the way they thought it would, or isn’t going as they had planned.

I for one, did not plan on getting a brain tumor at the age of 44. Nope, not in my plan! I didn’t actually have a life-plan, as it were, but if I did, this would not have made the top 10 list of what to do when I grow up.

The fact is that my life so far has been so much better than I had ever imagined. This situation cannot take that from me, and has given me the gift of a new outlook, acceptance, and gratitude for what I do have, especially the support and love of family and friends.

Living with a brain tumor of uncertain origin, behavior, or prognosis is a daily reminder that I just never know what someone else is going through. Not all of our problems are visible. When I am able to remember that, I am able to have more patience, to feel more compassion, and to show others (and myself) more love and kindness. It is also a reminder that each day is precious and that none of us know how many days we have in this life. I was shown that friends, acquaintances, and even complete strangers are willing to help when asked.

It’s too bad that it took something putting the fear of imminent death in me to truly feel grateful for each day. It may have been the way my neurologist told me the news, the words he used as well as how he looked at me; especially how quick he was to whip out his prescription pad to write me a script for 100 valium with 3 refills with instructions to take 6 a day while telling me that I’m going to need it, and that he doesn’t care if I get addicted to them because I have a long fight ahead of me. Yeah, I think he scared me more than the actual brain tumor. No, I have not been eating valium like M&Ms, by the way. In fact, I haven’t drank alcohol or taken drugs in over 18 years, so I’m sure as hell not going to start now!

The shiny new-ness of thinking I was about to have my skull cut open, have some tumor and brain scooped out, take lots of poison to treat it, then keel over dead anyways, has worn off, but I am trying to keep the attitude of, “Oh well, let me stop freaking out about everything and enjoy each day.” Unfortunately, I do still meander off the course and get stuck in the petty stuff sometimes, but I think I’m doing better with my outlook than I was pre-Bob.

I have stopped asking Why, What if, and What the hell, dude. I am going forward from right here. Starting with getting the hell out of sub-freezing weather this winter and becoming possibly the youngest snow-bird in Florida!

Giving thanks

A couple of decades and lifetimes ago, my Thanksgivings were spent around a large rectangular rough wood table in the kitchen of my “second family’s” old farm house in rural West Virginia.

There was always a fire in the wood burning kitchen stove, and if it was a particularly cold evening, Ed would open the oven door, put one of the kitchen chair’s cushion on the door, stoke up the fire, and call it the Florida seat just for me. I could perch there on the door for the entire night, the smell of the burning wood mingling with the delicious scents of the feast in front of us.

Linda, my West Virginia mom, is of Portuguese and Italian descent, and therefor would always cook up a huge dish of lasagna to go with the traditional turkey fare. Neighbors and friends would stop in with more home-cooked dishes to share, whether just stopping by for a Thanksgiving visit, or staying for supper. The food and diners would often overflow from the kitchen table to the living room, with forays out onto the makeshift benches on the front porch to take a break from the many rounds of full plates, and have a smoke.

There were also my early-childhood Thanksgivings in Florida, with the long drive across Alligator Alley from the east coast with my mom and brother to visit our grand and great-grand parents who lived west of Lake Okeechobee. My brother and I would fight over whose turn it was to sit in the front seat, then fight more about who was touching whom instead of keeping our hands to ourselves. Then I would stare blankly out the window into the everglades which seemed to go on and on forever on either side of the two-lane road.

I loved the smell and feel of my great-grandmother, Nana, when she hugged me close. She smelled of baby powder and fresh cotton, and her skin was soft, plump, and wrinkled. Nana had a way of making each of us feel like the most special and loved person on earth. The game was on the TV in the background, and to this day the sound of a football or baseball game on the TV or radio makes me think wistfully of my great-grandfather, Pop.

We had a small family, an even smaller one now, but I vaguely have memories of other children around the kids’ table on Thanksgiving, who were perhaps in some way related to us.

I give thanks this year for all the memories created by my family; family of birth and expanded families of choice. For the many ways they have each shaped the woman I am today, and for surrounding me with love and support then and now.

Thank you for reading along on my journey. More will be revealed…

Dawn

Giving thanks

Nine lives & second chances

When I recount stories of the many adventures and misadventures throughout my life, I feel as though I have lived several lives in this one lifetime. No one life could possibly hold so many twists and turns, experiences, and transformations. Yet here I am, getting another second chance at life.

Seven months ago, I thought my life was over, or would at least change drastically for the worse. It has changed, not for the worse, not for the better, just different. I feel like I’ve been having a very slow-motion close-call. My life didn’t flash before my eyes as it did when I was hit by a car on my motorcycle, it’s more of a slow-parade of memories and feelings passing through my brain.

I have been slowly emerging from a cocoon of shock. I currently struggle with bouts of survivor guilt, having read so many personal accounts of others with much more aggressive, destructive, and often times fatal brain tumors. I somehow lucked out as far as brain tumors go, as Bob is just chilling up there not growing or causing a ruckus. For an uninvited guest, he is very well behaved. Maybe just a wake up call after all.

The question begs, what do I do with this precious second chance?

I’m not exactly sure, and if I was sure, I’m sure I’d change my mind! For now though, I am re-evaluating what matters to me and rearranging how I live to come into alignment with that.

Step one is to return to South Florida to spend time reconnecting with my family. Besides, what better time than winter to go from Colorado to South Florida?

Step two doesn’t matter yet, I’m not there. A personal dream is evolving as I am letting go of the fear I’ve always had of not succeeding, not achieving, of never being or having “enough.” I don’t know what lies ahead, but I know it is fabulous, and I will embrace every ounce of joy and love that comes my way!

This life will not be wasted nor regretted! Bring it ON.

Remember, more will be revealed…

Dawn

Fear Factor

I ran into a friend whom I hadn’t seen in awhile a few days ago, and he asked me how I’m doing with the fear factor. I responded with a blank stare as I was trying to figure out what he was referring to. I’ve had some financial fear lately, and some worries around job-security, but I couldn’t remember mentioning those to him. It finally occurred to me that he was referring to my total freak out about being diagnosed with a brain tumor, and all the anxiety I had around not knowing the type, treatment, or prognosis. “Ohhhh,” I said, “You mean the whole brain tumor thingie!”

Well, I’m actually feeling pretty damn lucky and grateful after six months of no growth, so I’ve not been in fear around that. I laughed and told him about the day-to-day living-life fears I’ve been having lately and thanked him for giving me the awareness that the biggest fear I’ve had to face in life so far is no longer front and center. Wow! What a difference six months can make. If I can let go of THAT fear, I can let go of the day-to-day stuff too.

I’ve not needed a biopsy, brain surgery, stent placement, chemotherapy, or radiation. I don’t have what my first neurologist suspected, a glioblastoma multiforme, which has a very low survival rate/life expectancy (otherwise it would have grown by the first 3 month follow up.) I’m frigging counting my blessings at this point!

I *almost* feel like apologizing for making a big deal out of having a brain tumor. Except that, you know, it is a pretty scary thing to get diagnosed with. But hey, who’s the luckiest girl with a brain tumor?

I am!

Thanks for following my journey, more will be revealed…

Dawn

Spare the platitudes

What do you say when you just don’t know what to say? I’ve probably heard it all by now:

Everything happens for a reason.
Nothing happens in God’s world by mistake.
God doesn’t give you more than you can handle.
There’s an important lesson in this.
You’ll be a better person for it.
This couldn’t have happened to a stronger person.
You’re on this path for a reason.

These may be well-meaning phrases, coming from well-meaning people, but they feel empty, trite, and dismissive to hear when you are still reeling from a traumatic or tragic event.

I am no longer reeling, by the way. I’ve moved through shock, anger, fear, grief, self-pity, depression, more anger, into acceptance and even gratitude that it’s not the worst kind of brain tumor to have after all.

However, when I was in shock, anger, grief, fear, and depression, I wanted to punch anyone who, well-meaning or not, said any of the above. Instead, I would take a deep breath and realize that they probably just didn’t know what to say. Those words are meant to be comforting. Unfortunately, they are dismissive of genuine feelings that result from traumatic or tragic events. They infringe on the space and permission to feel the deeper emotions of grief and prod you to skip right on over to acceptance, jamming those other icky feelings back down into your guts.

So, why do we (I’ve done it too) feel the need to say something that is ultimately dismissive of a person’s emotions when we learn that they are faced with a terrible situation? I don’t think it’s really meant to comfort the person we are speaking to, but to comfort ourselves. We can’t imagine what it would be like to be going through the same experience, so instead of feeling uncomfortable with our own fears, we simply say, “Everything happens for a reason,” or “Nothing happens in God’s world by mistake,” problem solved.

Even if you believe that nothing happens in God’s world by mistake, that doesn’t give you permission to white-wash another person’s emotional experience. Let the person you are trying to help come to their own conclusion about any reasons, purposes, lessons, or lack thereof in their situation.

I’m here with you.
I can’t imagine what you are feeling.
Is there anything I can do for you?
Would you like to talk about it?
I love you.
*hugs*

Those are all comforting, so spare the platitudes when shitty things happen and hug it out like you mean it! Unless the person doesn’t like to be touched… then no hugs for you. Me, hug away my friends, hug away!

Thank you for reading, more will be revealed…

Dawn