Dating Bob…

In a rare moment alone with my brother, right before Christmas, we shared a private (not so private now) conversation about dating.

When the conversation turned to me, Chad asked me if I had been dating anyone recently. I laughed and said no, I’ve been focused on other things for awhile. Here is what ensued:

Chad: Oh well, there’s always Bob.

Me: He’s always there for me.

Chad: I’m sure he’s on your mind all the time.

Me: I’m sure someday I’ll meet someone else, but for now, I seem to be stuck with Bob.

Lots of chuckles, giggles, and snorts. My brother totally gets me.

By the way, in case you’re wondering, Bob is the brain tumor’s name.

Chad and I at christmas 2015

 

9 Months post-Bob-discovery

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

December 13, 2015

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

2015-12-15 11.22.10

 

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

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

December 15, 2015

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

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

Starting from here

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

December 10, 2015

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

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

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

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

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

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

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

Giving thanks

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

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

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

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

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

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

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

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

Dawn

Giving thanks

 

 

 

 

Nine lives & second chances

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

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

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

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

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

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

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

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

Remember, more will be revealed…

Dawn

Fear Factor

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

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

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

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

I am!

Thanks for following my journey, more will be revealed…

Dawn