fear – 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.

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

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

Bargaining with The Dude.

I haven’t written in awhile due to spending several days in a comatose state, paralyzed by subconscious anxiety. Followed by several days recovering from the comatose state and re-engaging with life.

I have found myself internally bargaining with God. If You heal me, God, I promise to be a living testament of faith in You. If not, well then, all bets are off and F You. Not exactly spiritual, but very much human. A friend said to me this morning, “God is a Big Dude, and can handle your anger and doubt.”

I should find out the results of my 3 month MRI, which I had last Friday, in the next two days. Can you believe that they won’t rush the radiologist for ME??

I’m holding out for a complete healing miracle. I’d settle for no signs of growth.

More will be revealed…

In Love and Gratitude (even when I can’t feel it)

Dawn