acceptance – 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.

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!

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!

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

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

What’s worse?

I just had the stomach flu for three days. I have to say, spending several days and nights nauseous, unable to move or eat, was worse than having a brain tumor. At least the particular tumor on my brain stem is not giving me the typical brain tumor symptoms of headaches, nausea, or double-vision. For that, I count myself lucky! I don’t deal well with being physically sick or in pain.

I have had several friends lately bring up difficult situations in their lives, only to follow up with something like, “Well, I shouldn’t complain, that’s no big deal compared to what you’re going through.” As I have told each of them, whatever difficulties we each have in life on any given day IS a big deal. It’s not a competition, folks, we all have shit to deal with. It doesn’t do any good to compare or rate how difficult your shit is vs. someone else’s shit.

When I was tossing my cookies at the end of the day Thursday, I didn’t stop to think, “hey, this is nothing compared to the brain tumor!” No, my first thought was thank God I made it to the bathroom in time (I was at work) and I hope I can drive myself home. When I’m stressed out about paying my bills, or anxiously tallying up my total at the grocery store hoping I kept it under my budget, I’m not thinking, “well, the brain tumor didn’t do me in, so this is a piece of cake.”

So yeah, we all have everyday-life difficulties. We each face disappointment, illness, worries, struggles, and whatever is the most pressing situation at the time, is the big deal at that time.

When I was first diagnosed, I’m pretty sure I would have at least thought, if not said out loud, that being diagnosed with a brain tumor was far worse than any of your problems. I spent several months full of anxiety, fear, anger, and depression about my future. I began to think that dying would be better than living with this much fear and facing an unknown outcome.

My future is still unknown. But guess what, so is yours, so is everyone’s. So I can choose to continue feeling scared, anxious, and full of self-pity, or I can get on with engaging in and enjoying life. I’m not saying that changing my attitude was easy. I’ve had a ton of support and love. I’ve had professional counseling. I’ve engaged in prayer and meditation. I’ve applied principles that I learned in a 12 step program. I adopted a puppy. Plus, I’ve had two MRIs in the last 6 months showing no growth of the tumor, yeah, that helps!

If anything, I suppose it’s not the particular difficulty I’m facing at any given time, but my attitude about the difficulty that makes the difference in my level of serenity. I have to ask myself how much power do I want to give that conflict (be it a conflict with another person, financial stress, a health problem) over me? I never want to discount my feelings, but can I learn to pay attention to what my feeling is telling me, then let the feeling itself pass? I hope so.

I think we all need to complain sometimes. As long as it doesn’t turn into wallowing or staying stuck, I know that I occasionally need to be able to just vent. Sometimes we just need someone to bare witness, whether to obtain advice, to receive encouragement, or simply want quiet support.

Thank you for reading. More will be revealed…

Dawn

Six months later…

(I started writing this post on 9/25, but I fell asleep and then forgot!)

I haven’t had much to say on this topic lately, so I’ll start with a brief update and see if anything else decides to be written.

I had my 6 month follow up with my Neurosurgeon, Dr. Levy, yesterday. As usual, his nurse evaluated me first, including a series of coordination tests which I think are the same as roadside sobriety tests. I think if she were a state trooper, I would have had to take a breathalyzer to prove I was sober, but she thought I did great. I found out that I had a fever of 100 F, and that the brain tumor has not grown at all in 6 months since first being discovered! I didn’t feel like I had a fever, but that was awesome news!

Did you catch what I did there? Bob is now THE brain tumor and not MY brain tumor. Semantics? Not at all. I heard a wonderful thing from a friend the other day. His mom recently told him about finding out she had breast cancer, and she told him that her body has cancer, but SHE does not have cancer. Bob is not MY brain tumor, although it is a tumor on my brain stem.

He pulled up the images of my first MRI on which Bob’s existence was revealed, as well as the 3 month MRI, and this recent one at 6 months and walked me through it all again. Totally a Grey’s Anatomy experience, with my brain as the star patient. Also, with about a trillion times less anxiety than our first consult.

What does it mean? Well, as long as Bob remains quiet, it means no dangerous biopsy, and no treatment necessary! I’m feeling mighty graced right about now. It also means that I may need to find something else to blog about 🙂

Dr. Levy wants to follow up with 3 month interval MRIs until I’m a year out, and if there is still no growth, we will discuss pushing it to 4-6 months apart. You know you’re accustomed to MRIs when you look forward to the warm blankie and a little nap time, but I would be thrilled to make that co-payment less times per year.

In the meantime, I adopted a puppy! Which has nothing to do with this post, but everything to do with embracing life and the joy of living!

Weighing in at 2lbs, the tenacious Chewie.

Thank you for reading. More will be revealed…

Dawn

We are all terminal

Bob has been on my mind more recently. Ok, ok, I know, he’s kinda always ON my mind…

I made my next follow-up MRI appointment and follow up with the neurosurgeon for the end of this month. Somehow, just making those calls is enough to spark fear and uncertainty back up to the surface. Most likely, the report will be the same as the 3 month follow up, no growth. The two most common types of brain stem tumors in adults are a Grade 1 (very slow growing, as close to benign as you could hope for) Polycytic Astrocytoma; or the extremely aggressive Glioblastoma. Since it showed no growth in 3 months, that pretty much rules out the Glioblastoma. And yet… having been told that brain-stem tumors are never considered “benign” and eventually will grow, I’m kinda nervous.

I heard a cool story this morning from a friend which brought me a lot of peace. My friend worked with a man who was always cheerful, smiling, and making people feel good wherever he went. My friend found out this man had terminal cancer and was undergoing regular chemotherapy treatments. My friend asked him how he managed to be so happy and spread so much joy under those circumstances. The man quoted Romans 12:2 from the bible, “Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is – his good, pleasing, and perfect will.” I forget the rest of the story, actually, but that was enough for me.

We are all terminal. My official diagnosis does not state that I have a terminal illness, and I’m sure many of you have not been diagnosed with a terminal illness. But as we live, we are all terminal. We may not know when or by what means we will die, but we most certainly will die. A few months ago, a dear friend asked me what I want my legacy to be. How would I want to be remembered after I die. The story I heard this morning reminded me of that conversation, and of my answer. I want to be someone who delivers a message of hope and joy under all of life’s circumstances. I would like to share my experience, strength, and hope with others and be a light of love and joy. I have not been making that conscious choice on a daily basis lately. Instead I have been conforming to the pattern of this world. I have been conjuring up anxiety about my future and focusing on what I perceive as missing from my life.

Some Christian friends have told me that they find comfort in knowing that after death, they will be in the kingdom of heaven for eternity. It’s not death that I fear or struggle with, it is the living day to day that I struggle with, that I am anxious of. It is in living day to day that I worry about paying the bills, eating enough and the right kind of food, performing well at work, and wondering if I will ever find lasting love. Then sprinkle some brain tumor on top. It’s like Miracle-Gro for anxiety.

So, yeah, sign me up for some of that transformation by the renewing of my mind, please. My attitude and outlook need some refreshing and uplifting; only then can I hope to be refreshing and uplifting to others as I so desire.

Thank you for reading… more will be revealed.

Dawn

Deciding to live

It just occurred to me a few minutes ago, after returning home from walking Saffie, that I had decided to live as though I’m living again. I wanted you to be the first to know!

I don’t understand what happened to me just over a month ago. When I received the follow-up call from the neurosurgeon’s nurse that my MRI showed no tumor growth, the best possible outcome that I could dare hope for, I spiraled down into melancholy and despair. Some unseen balloon inside me was popped and my faith and hope leaked out.

I stopped researching, stopped writing, stopped reading other brain-tumor patients’ blogs. I ran out of energy to care. I had given up on living, and was just existing.

It did not help that I couldn’t sleep. I was physically exhausted since I had been doing the most labor-intensive work than I had done in 20 years, cleaning animal kennels 40 hours/week. However, the anxious little hamsters in my head ran around on their wheel all night long, assaulting me with “what ifs” and “why bothers”.

Last week, I finally gave myself permission to not criticize myself for wanting to do nothing except sit on the couch and eat my non-dairy ice cream and binge-watch a TV series every night after work. I finally let myself off the hook for no longer giving a shit, for not doing the things on my list, for letting my dishes pile up in the sink, for having no plans for a secure future. I let myself off the hook for not meditating enough, for not eating healthy enough, for not trying medical marijuana, for not visualizing the tumor shrinking, for not praying enough or the right way, for not having faith that I’m going to be healthy, and for feeling anxious and depressed after hearing that this fucking tumor did not grow.

So what shifted? Did I finally sleep enough? Finally watch enough streaming TV? Spend enough hours scrolling through Facebook instead of meditating? Did all of that not giving a shit finally force me to let go of my insane desire to control what’s going on in my head?

I really don’t know. Yesterday after work, instead of coming home and binge-watching tv while binge-eating ice cream, I took my dog hiking in the mountains. Today, instead of napping, I hung out with a friend I haven’t seen in a month, and spent a couple hours studying for a course I started a year and a half ago. Then it quietly occurred to me, a few minutes before writing my first post in over a month, that I feel like I’m ready to live again instead of just existing in fear of this thing in my head growing.

It’s nice to be back. I’ve missed me. 🙂

Thanks for reading… more will be revealed!

Dawn