One of the bad things about Cowden Syndrome is that if you see something odd on your body, it’s a struggle to keep your mind from going to the bad place.
And by you – I mean me.
I have an 85% lifetime chance of getting breast cancer. I really hate those odds.
- In the shower just now, I found something on my breast I’ve never noticed before.
- I keep telling myself, “It’s just dry skin. It’s ringworm (ew). It’s nothing.”
- Don’t overreact. Don’t cry wolf. Let it go. See how it is tomorrow.
- But what if it IS something? I can’t ignore odd things popping up on me. That’s the epitome of PTEN mutation. Lumps & bumps.
I hate to seem like I’m crying wolf though. And, what if I can’t see clearly through my own eyes?
Once you get diagnosed with a chronic medical condition – you see who your true friends really are.
(Or aren’t, as the case may be.)
EDIT: This post in no way reflects my feelings towards those special few people who have donated to my GoFundMe account these last few days. I am very grateful to you all. Thank you. ❤
I have a tweet pinned on my Twitter profile that’s been weighing on me lately:
“Brain Tumors don’t define me”
But, you know what? They DO define me. As much as I struggle against them, they do. Just about every waking moment I’m reminded how they have defined my life. Can you guess how? Not by the numerous doctor appointments. Not by the many scans and procedures I now endure. They define me because of my dire financial situation.
If I was able to
keep maintain a job of some sort and had some income coming in, it’d be easy to be defined by something else. I am a friend. A daughter. A sister. An Aunt who just happens to have 2 brain tumors and a rare, genetic condition.
How do I find meaning in my life now when I can’t take care of my needs? I am racked with guilt every moment of the day that these brain tumors forced me to beg for help. (I guess I should look at it a different way instead? That these brain tumors forced me to be humble? I guess I wasn’t humble enough before?)
Why did major brain surgeries have to force me into submission? Today, I can’t pay for gas for my car or much needed clothes (my socks have holes in them) or even $900 to fix a crown that broke a few days ago.
Can anyone understand how my life is ruined now? Credit cards are maxed out. My retired-mother is forced to pay for my daily living expenses. How can I see or hope for change? Can anyone understand how these brain tumors DO define me, yet I want so much the opposite to be true? I want to enjoy life. Is that too much to ask?
So, I’ll ask you instead. How do YOU define yourself?
It’s time for a change-up. I get tired (honest!) of writing about doctor appointments, brain scans, etc. So I decided it’s time to share a funny with you.
For the past several weeks, I noticed a yellow hue on my palms. Both hands. My palms and fingers. Weird. A bit concerning. I thought of my kidneys right away! Oh, crap!
I e-mailed my doctor. I did some research about “Yellow palms” and read about beta-carotene and B vitamins.
Nothing was really coming together.
I stopped the taking the folate and stopped eating my main food staple:
Guess what had been staining my palms yellow?!
I’ve borrowed this from This Mom’s Gonna Snap a few times and wanted to do one more before 2016 is up.
Making: My bed.
Cooking: Does helping my mom make Christmas goodies count?
Drinking: A Skinny Girl Protein drink.
Reading: The Lucky One by Nicholas Sparks.
Trawling: The Internet for a Harvey’s Seatbelt bag. (I can dream, right?)
Wanting: To be healthy.
Looking: For a way to not feel like a frump for 2017.
Deciding: If it’s time to downsize some clutter in my room.
Wishing: I could go to Disneyland. Or, to be honest, Disneyworld.
Enjoying: Quiet mornings.
Waiting: For my head to clear.
Liking: Donny Osmond Christmas music.
Wondering: What Christmas Clearance deals I can find.
Loving: Grace and Frankie!
Pondering: Where I will be in 40 years. Alone? Healthy? What will the brain tumors be doing?
Listening: To the wind gusting outside.
Considering: How I can make 2017 my best year?
Buying: Healthy foods.
Watching: Days Of Our Lives
Hoping: For good health.
Marveling: How quickly Christmas flew by!
Cringing: About how people are willing to sever relationships over differing politics
Needing: To go for a walk.
Questioning: How people can abandon their animals.
Smelling: Lavender lotion.
Wearing: Christmas socks!
Following: More bloggers who champion Rare Disease Awareness.
Noticing: I need to up my water intake.
Knowing: I have a few thank you cards to write this week.
Thinking: About how I will incorporate more exercise into my life.
Admiring: How strong people living with Cowden Syndrome are!
Getting: The itch to travel somewhere.
Bookmarking: More books. I love the Goodreads app!
Opening: More books!
Giggling: At myself.
Trying: To not miss Halloween at Disneyland too much.
Hearing: The TV.
Celebrating: My birthday soon!
Pretending: That my life isn’t as hard as it as sometimes.
Embracing: Quiet. Rest. Family.
I have had a rough few days. Not sure why; not sure what triggers them. I have to accept the bad days, along with the good.
So, I had my brain scan a few Fridays ago. Saw the neurosurgeon the following Friday. Stable. Stable. Stable. In fact, the radiologist said “Grossly stable.” GREAT NEWS! If there hasn’t been any growth in 5 years, I hope that the next 5 years will be the same, you know?
Although I struggle with
wanting needing to know everything about the brain tumors. Has there been minimal growth? MRI’s aren’t 100% accurate. So, how much are we off? When will I be told there IS growth? When will the “MRI’s not 100% accurate” show growth? Does that make sense?
I know I must accept the stable. And, don’t get me wrong – I do. But these dang brain tumors keep me up at night. Sometimes I can’t believe I have 2 brain tumors in my cerebellum. Why me? What did I do to cause this? Why do I have 2 tumors? Blah, blah, blah. Same story, different day.
So, I got up this morning and went to the gym. I try to combat the bad days with something good. Something different. Something outside my comfort zone. Putting stability into my life where I can.
Yesterday morning I had another scan. I wish I knew how many I’ve had since diagnosis. (I bet it’s 10X more than I think.) You know, I
think hope wish that every time I go it’ll get easier. It doesn’t.
I have to ask the MRI technician every time the following questions:
- What if there’s a power outage while my scan is happening?
- What if something happens to you while it’s happening?
- What if there’s an earthquake while I’m in there?
- What if there’s a natural disaster? Or an emergency at the hospital while I’m in there?
The technician is pretty funny; he knows me by name and me him. He always talks me off a ledge, which I appreciate. Plus, I’m usually medicated so that helps 150%, too.
I practiced my visualization: I am at Disneyland. I am at the front entrance getting my ticket when the scan begins, then I start to make my way through the entire park. (It’s a neat little tip that works for me!)
Just like when I see the oncologist for my breast exam and think, “Is this the day she’ll find a lump?”, I found myself thinking yesterday, “Is this the day there will be growth on either tumor?”
We shall see.