Brain tumor – Page 2 – braintumorlife

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

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

The dirty work.

I am so happy to be officially off my medical leave and back at work! I was able to transfer from Payroll & Accounting to Animal Care at the animal welfare organization that I have worked at for the past year. I have received some amusing comments/questions and confused looks from my co-workers who know me as the lady who does payroll. One told me that I finally decided to come down and get my hands dirty. Well, that’s what the gloves are for, my hands stay perfectly clean. The rest of me I can’t comment on, but let’s just say that I take all my clothes off as soon as I walk into my house! I have gone from business casual in a cubicle to khakis and a t-shirt cleaning animal kennels, and they all want to know why. Wednesday, I was even congratulated and thanked for making it through my first day without quitting!

I love my new position, with the exception of starting at 6am. I haven’t had nearly enough coffee by 6am! I’m so busy cleaning kennels and feeding the critters, that I only notice the passage of time by my hunger for lunch. I am definitely getting a work-out. I’m learning a lot about the different animals, and myself. For instance, in just two days time, I am now pretty much terrified of chihuahuas. Ok, only the scared or angry ones. Also, small breed dogs seem to poop a lot more than the big guys . I’m pretty sure that a great-dane snuck into a little terrier’s kennel last night just to go poop.

With all the scrubbing and hosing and chasing of dogs (oh yeah, I’ve had three escapees in two days), I don’t have any time to think of brain tumor Bob. Except when I think to myself, “huh, I’m not thinking about the brain tumor” or when someone stops me to ask why I decided to work in Animal Care instead of Accounting. The appropriate answer to that question is NOT, “I have a brain tumor, took some time off, then decided that I’d rather work in a less mentally stressful environment and interact with the animals so that I don’t think about my brain tumor all day.” It makes people uncomfortable. Which can sometimes be fun. 😉

Six days until my next MRI, but who’s counting?

I think back to when I quit drinking alcohol 18 years ago and remember how obsessed I was about NOT drinking, every day, for months and months. Eventually, not drinking became my new normal, it was no longer an “issue” that I struggled with. That experience led me to a faith that I never wanted or considered before. The faith that I have gained gives me hope that there will come a time when I am not obsessed with having a brain tumor, and that I will get to another new normal.

Thank you for reading. More will be revealed…

Love,

Dawn

Well, this one’s a bummer.

For a few days now, I’ve been fighting against sinking into the pit of Nothing Matters Anymore. Today, I have sunk. Call it self-pity, call it being a victim, call it being spiritually un-fit. Maybe it is that, or maybe I’m just human. Either way, it’s uncomfortable and embarrassing, and now I am throwing what amounts to a public temper-tantrum. Feel free to skip this entry if you are hoping for humor or inspiration. My supplies were dwindling and now I’m fresh out.

Today:

I don’t want to pray.

I don’t want to meditate.

I don’t want to visualize healing.

I don’t want to be strong or courageous.

Today, I don’t want a F*ing brain tumor. I don’t want to wonder WHY or what to do about it. I don’t want to read brain tumor research, eat clean, or have a brain tumor.

I’m angry that I can’t stay emotionally stable, and that I’m exhausted most of the time. I’m angry that thinking positive feels too difficult.

I’m angry because I’m scared. And I am angry at myself for being scared. I have heard too many times that fear is the opposite of faith. If I don’t have enough faith, does that mean that I won’t get better? If I can’t stay positive does that mean I will get worse?

I may wake up in a better mood… with gratitude, acceptance, and willingness. This whole being human thing sure is challenging.

More will be revealed…

Dawn

Good ol’ St. Francis

I have to be honest, I used to flat out hate the prayer of St. Francis. Do you know that one? It’s all about being nice and helping others, disregarding my own ego. Are you kidding me?

I didn’t grow up with any religion, and first heard and read this prayer when I got into recovery for my alcoholism. That was NOT what I wanted to hear, let alone aspire to feel/believe/follow. I just wanted to feel better, and wanted to be the one being understood, consoled, pardoned, and loved. I felt that I had nothing to give to anyone else, I was all tapped out.

It has been a challenging journey since then, with one AFGO after another. (AFGO = Another F’ing Growth Opportunity) A journey to understand myself, learning to accept love, forgiving myself and others. I began to pray, not out of faith, but out of pure desperation, to be relieved of my misery. I followed (and continue to follow) a path laid out before me by others who walked a similar path and who were more content and joyful than I thought would ever be possible for me. I eventually came to believe that it was possible to choose joy and serenity regardless of outside conditions. Not that I always make that choice (I am a stubborn human being after all, just ask my mom!)

I am grateful for all of the experiences that I have had, and for my commitment to the recovery journey, for without it, I would be lost at sea with no compass right now. I have had years of developing my faith, years of retrospect that prayers do work (whether one refers to them as sending positive vibes, good energy, tapping into the power of the Universe, etc.) and that God’s plan is always way bigger and better than any of my own plans or expectations.

Any bit of grace or inspiration that I have or can offer as I walk, crawl, or cry through this situation, comes from my faith in One much greater than I, which I believe is deep inside every one of us.

I have the prayer of St. Francis taped above my computer where I can see it, read it, and pray it with earnest every day. It brings me peace, as I pray to shine a little light into the darkness.

Thank you for reading. More will be revealed…

Love, Dawn

When life hands you lemons… Compost.

I woke up feeling defeated this morning. A little downward spiral began yesterday afternoon actually, after a visit to my work-place where I am on a leave of absence from. I have been in limbo between wanting to go back to work and trying to get hired in a less-stressful department. I was hoping for resolution yesterday, but instead I was told that they would let me know in about two weeks. The un-knowing is very unsettling. As is the being-broke.

My next MRI is in two weeks, which will let us see if Bob is growing. I feel 95-98% certain that Bob is behaving, but I don’t have a crystal ball and cannot assure my supervisors that I am not going to need to take time off for a biopsy and therefore get back to work as a reliable part of the team.

I took my defeated ego to bed for a nap yesterday afternoon, and if I hadn’t made a commitment to myself to go to boxing class in the evening, then meet some lovely friends for dinner, I would not have gotten back up until this morning. Was that me, just yesterday morning, who felt such faith and trust that everything is working out the way it should? Well, F that person, this person had decided to wallow in the shallow mud of self-pity for the rest of the foreseeable future, or at least until boxing class, where I could imagine that I was beating the crap out of Bob with my fists.

I do not like the see-saw of emotions, of faith/non-faith, of gratitude/self-pity, of patience/impatience. This battle of ego and acceptance sucks.

This morning, I woke up on the self-pity side of the bed. I pulled on my sweatpants, t-shirt, and baseball hat (my pre-shower uniform) and leashed my dog to walk to the nearby coffee shop. Since I feel like crap and can’t go to work, I may as well sit outside and study.

Walking past an alley just a block from my house, I saw a barrel-composter with a “Free” sign taped to it. I dragged my confused dog back home, drove my Element back, wrestled the thing up onto the back gate, and drove it home, with all the excitement of a child on Christmas morning.

My roommate was in the kitchen making breakfast as I burst inside with my new and improved attitude exclaiming, “I found a free composter!” I am glad to tell you that she seemed as pleased about this as I was. I told her about how my mood and attitude had been until seeing this gem, and she said, “keep calm and compost.” Yes, that! I think we’ll have some t-shirts made.

More will be revealed…

Love, Dawn