living life – braintumorlife

Creating Something New

starting something new post

As it turns out, life does not stop when one is diagnosed with a brain tumor (or any other illness/injury for that matter). Utility bills, car payments, rent or mortgage, medical expenses, these all continue needing to be paid. Groceries, prescriptions, and gas for the car all still need to be bought. There is no “free ride” as they say. Even if you qualify for Medicaid, food assistance, and/or disability, I dare anyone out there to survive, let alone thrive, on that alone. I have tried, and it is a pitiful existence full of anxiety, struggle, and low self-esteem. It was certainly better than nothing, but surviving is NOT thriving.

The world is full of advice such as “Live each day to the fullest” and “Do what makes you happiest” without any real means of achieving those ideals aside from being independently wealthy or “visualizing/manifesting”, um, back to reality please. I assume that those who say money can’t buy happiness have enough money to pay their bills and eat well. While I agree that happiness can’t be bought, it sure does alleviate the stress and anxiety of just trying to get by.

So, while I did quit my job and move to Florida to be with my family as a matter of changing my priorities (as well as a matter of getting away from freezing temperatures!), and I am so fortunate to have my mom and step-dad to live with, alleviating much of my financial burden, there leaves getting a JOB and earning an income.

As many times as I have moved, I still forget how stressful it is to find a job when I get where it is that I’m going. I don’t know about you, but the job searching, resume updating, cover letter writing, and job interviewing kinda sucks. I’ve mostly applied for part time retail/customer service positions, just to earn enough while I am completing an online program in Medical Coding/Billing. Perhaps when my resume is reviewed, the impression is that I am over-qualified? It’s not like there’s a spot to write in, “No, no, I really do want to stand at the register and ring people out for just above minimum wage despite my qualifications to do so much more. You see, I’m still recovering from the shock and anxiety of having a brain tumor, plus I’m taking online classes, and I don’t want a high-pressure full-time office job right now.” Basically, I’m not what they are looking for.

A rather important side note is that stress has been proven to encourage cancer cell growth, something I am REALLY trying to avoid!

Fortunately, a dear friend of mine has hired me for two days a week to complete a short term bookkeeping project for her business. That got me to thinking… with my 15 or so years of small-business bookkeeping experience, coupled with online account access, I could do remote bookkeeping for clients anywhere. After further research, I found that there is a growing profession of people called Daily Money Managers, who, at the least pay bills and balance checkbooks for their clients, which can also be done remotely.

Instead of drafting cover letters and updating my resume for advertised job openings, I am drafting engagement letters and updating my services and fees for potential new clients. Without needing to commute to a job (currently living 20-30 min from anywhere), buy clothes for interviews or workplace, and possibly working longer hours for less pay, I have the potential to work fewer hours with no commute and much less stress, allowing more time to study, to spend with family and friends, and to write.

my view for blog — view from my outdoor office

A friend recently asked if I have a passion for bookkeeping as I usually end up working in that field. I would have previously said no. I mean really, bookkeeping?! Does that SOUND like something to pursue with a passion? The fact is, I am good at it, it comes naturally to me, and I find a great deal of satisfaction in balancing all the accounts. It’s also a great service to others who have either no interest in or actually despise keeping up with their business or personal bookkeeping. So while I may not describe it as my passion, I certainly enjoy the heck out of it.

Sometimes, it really helps to look at something from a different perspective for inspiration! I am creating a career for myself that I can do from home or take with me anywhere. I was trying to figure out how to earn some income writing, but the truth is that I enjoy writing when I feel inspired and not pressured to do so, and that would change if I felt that I needed to earn income by it.

Are you looking for fresh inspiration? Are you pursuing an alternative income-earning solution? Let me know in your comments, we can always use more inspiration from one another!

Thank you for reading my story. More will be revealed…

Dawn

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!

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

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

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