Over on The Twitter, Thursdays are #braintumorthursday and those interested come together to tweet under that hash tag to raise awareness for brain tumors (benign and malignant). And since Lhermitte-duclos disease, or gangliocytoma, puts me right there in the mix, I choose to be as involved in the tweeting as much as possible.
There has been some discussion about “raising awareness” compared to “advocating”, and the differences, or positives/negatives of both. Personally, I think the 2 terms are interchangeable and I see advocating (depending on the type one chooses to do) as sometimes including a financial part (which I don’t have) so I usually say that I “raise awareness” for brain tumors. Either there or here.
Whatever you choose to do, do it with your whole heart and as well as you can!
Here are my #braintumorthursday tweets today:
- Sometimes I ponder the shock the technician must have felt upon seeing the 5cm tumor in my
#cerebellum on the CT scan. #BrainTumorThursday
- Lhermitte-duclos disease, or gangliocytoma, is a benign brain tumor that makes up about 1% of all brain tumors. Pls RT
I am super late in writing my Fun Fact Friday because of this nasty cold. UGH. Alla-Seltzer plus, DayQuil, et al is only scratching the surface. The Fun Fact Friday for 2/28 is that day was Rare Disease Day. You can read all about it here and here. The following are more things I wanted to share with you about Rare Disease Day.
2). I was at the doctor on Friday (my Primary) and she wears the denim jeans pin on her name badge that I gave her ~ she’s cool like that. :) I told her it was Rare Disease Day – and I guess due to my cold, she thought I said, “Wear Disease Day”. BAHA.
3). I did a lot of tweeting about RDD and connected with many who have rare diseases. It’s nice to know I’m not alone. Did you know there are about 7000 rare diseases?
This is another amazing organization bringing rare out of obscurity. I heart them; and I hope you will heart them too.
I have written about this before, and I actually quite pride myself in this fact. Or feat. You choose.
Today’s Fun Fact: I have never watched an episode of American Idol.
And, I never will.
Not to be confused with:
- V-Day (Valentine’s Day)
- D-Day (Invasion of Normandy)
I saw some women about my Dairy Queens today. I thought I had prepared myself pretty well, to be honest. The nurse called me yesterday and went through any last-minute questions I had (I had none, really. Only that I was mildly concerned that my stomach would hurt lying face down. You see, if you were wondering, this is how you do breast MRI’s. But, my stomach wasn’t angry about it at all. Thankfully. Now my head, that was another story.) I don’t know what it is about this type of MRI causing me such a painful headache. Anytime I have my “other” MRI’s I don’t have a headache – and they are checking my head on those!
But I am getting off topic. So, I got Dr. Mom (my driver, much to her chagrin) all set to drive me to the appointment today since I was “totally drunk” (my quotes). I heart some Ativan. Really. If your doctor approves, you should look it up. It’s some great stuff.
When I walked in the office door, it alllllllll came flooding back. All. Of. It.
But, I had put on my big girl panties already this morning. I am a fighter. I am a warrior. I was going to knock this MRI out of the park. And, I sure did!
After I got to the changing room, (albeit slowly because I was totally drunk, mind you) I texted Mom and said I was going in and then I greeted the MRI machine LIKE A BOSS! Got all propped up and picked my music (Michael Buble, thank you) – but, and here’s where I continue to be honest on my blog, I didn’t fit comfortably into the tube. All the cushions (for my comfort) weren’t making it so. I couldn’t breathe. The top of the tube was pressing onto my back and my ribs were constricted. Urg. Strike 1.
After we got that situated (she removed some cushions and that made all the pain go away it was smooth sailing) – the staff put the headphones on my ears and buzzed me into the tube. There’s a mirror below so that you can at least see out (I kept imagining my dad standing in the corner of the room looking over me) but there was no music. I had huge headphones over my ears but no music. I kept thinking, “OK. Any day now. Come on you guys. Get the music going.”
THEN, the scan began and for those of you who have had MRI’s before – the noises are LOUD! Normally, I get earplugs and then at this place they offer music as an added treat. BUT there was NO MUSIC AND NO EAR PLUGS! STRIKE 2! I pressed the button in my hand to make the scan stop and they appeared very “put out” that I stopped the exam. I said, “I think I need ear plugs if there’s no music.” and my thought was, “Ummm, hello crazies. Didn’t you just SAY you were going to turn on Michael Buble for me?” So Nurse “whatever” comes in and about rams the earplugs so hard into my ears she could have hit my heart. She said I couldn’t move my arms, blah blah blah. (Now, maybe I am exaggerating a tad, but still. I wanted to tell her to get over herself. You shouldn’t be in this business if you have no compassion.) Even though she kept saying to me, “You’re in charge.”
Back into the tube I go, again. And, Michael comes on. My usual routine is to “go” to Disneyland in my mind. I imagine myself at the front gate of the park, going through the turnstiles, and then walking the entire park. I do this for every MRI I have. It helps the time to pass very quickly. Except…
The contrast comes into my veins about 10 minutes before the end of the test. Normally, thankfully, I don’t have a problem with contrast. But, I was having a problem with my head. It was hurting so bad my eyes were watering. And, I had saline coming into my veins and my bladder was getting full. AGAIN. I felt I was in a movie that was NEVER. ENDING.
But, thankfully again, this movie today did end. I ran to the restroom and then mom was outside waiting for me. We went to Del Taco and she bought me a Strawberry Lemonade and I had some of her Pepsi to help my headache. (I didn’t break my “No Diet Coke” thing that I have going on since October of last year. I needed caffeine desperately. So, I compromised with straight Pepsi.)
Next week I see Dr. L and will get the results. You know, I’m still not 100% clear on MRI’s, mammograms, now that I had a hysterectomy, what, if anything changes my breast cancer risk due to Cowden’s Syndrome. Sometimes, I just hold on to a tiny sliver of hope that since NOT ONE SINGLE WOMAN IN MY FAMILY has breast cancer, don’t I have at least some good genes?
It’s kinda funny to me that I celebrated V-day with mom last week, and today we shared my B-day. AND…my actual b-day is coming up in a few weeks! The real b-day that you want to celebrate!
Here’s a sure-fire way to ruin a perfectly good Saturday afternoon: In doing your taxes you find out you owe $521!
After the Turbo Tax fiasco I had to go outside for a walk to clear my head because I was afraid I was going to lose my noodle. I saw this pretty thing outside and it captured my attention.
When I got home I just did the next best things….I updated my GoFundMe page, wrote a small check to the IRS on the balance I owe, and ate a carb-filled (baha) dinner with mom.
I pray things look better in the morning.
I subbed a few hours this morning at a local high school, so of course, that meant I could eat sushi for lunch. (Remind me to tell you later about the student who left for 1/2 hour to go to the restroom!) They go hand in hand. Trust me. PLUS – it’s Valentine’s Day – so that was a DOUBLE winning shot that THIS GIRL was eating some type of Premium Sushi Roll this afternoon. So…my Fun Fact was going to be: “I love sushi.”
HOWEVER, I drove around to 2 different places after work and they all opened 30 minutes later than what my stomach agreed to. This picture shows my lunch as I waited for my chicken and broccoli snooze fest.
What if there was a Rare Disease Manual? That detailed very explicitly what one should do after diagnosis on how to find balance in life again. How to interact with people in a safe and healthy way. Would you read it? Would you follow it? Would you do everything it suggested?
It is super clear to me that I am not over this brain tumor. The shock of it and all that lead up to both surgeries. I remember the moments before going into the OR like it was 4 hours ago. I can go back to the bad place in a hot minute. And, that scares the crap out of me. In more ways than one.
Sure, it’s almost 3 years since surgery and I should be “past” this, right? Well, I’m not. PTSD? Absolutely. Before you judge me and think, “Man Heather. Put on your big-girl panties and suck it up. You don’t have cancer.” – You’re right. I do not have cancer. And, I’m so thankful for that. However, EVERY SINGLE MOMENT OF EVERY DAY I THINK TO MYSELF, “Is this my last day? Is this the day BEFORE I find out I have breast or kidney cancer?” There are no guarantees in life either way. That I will or will not get cancer. I won’t bore you on the studies about PTEN mutations and lifetime cancer risks. But, the pressure and fear and waiting and unknown is quite paralyzing at times. All those jumbled emotions motivate me to write more. To find balance. To figure my life out today.
The living “scan to scan” – with Cowden’s Syndrome and Lhermitte-duclos Disease – isn’t really living. The what if’s? The unknowns. The responsibility; the pressure; the weight on my shoulders is sometimes overwhelming. Managing all the appointments and wondering/pondering, “Is there something else I can be doing to help my body not make tumors that can become malignant?” – I need a job -> money -> I can then buy things that will help me health-wise (juicer, gym membership, supplements since there is no FDA treatment for Cowden’s Syndrome or Lhermitte-duclos Disease)…The point is that I AM TRYING TO NAVIGATE MY LIFE WITH 2 RARE DISEASES. I am a work in progress. Remember the manual I wrote about in the beginning? Well, there isn’t one. So, I’m doing all of this without a net. Can’t you have some patience with me? Or some understanding? Instead of judging me and my actions, why not offer some compassion to me? Empathy? Understanding? This world of Rare Disease is terrifying. As I get more involved in it I see how different it is for every single person in it. My book wouldn’t even be the same as another person with Rare Disease, but I assure you: If there was a book I could read, or was recommended, on how to navigate life once again with all these things on my plate, I would read it in a heartbeat. This isn’t a fun place to be in folks. Lest you think I choose to be here…do think again.
Last night a friend told me that I have “walls up”. I don’t know how much truth is in that statement; however, I believe there is some truth. Emotional Pain is hard to let go of. Forgiving others when you’ve been hurt is a rough pill to swallow. Finding support from people you feel you can’t trust isn’t easy. I’m not here to chase people. I’m not here to hunt you down and guilt you into being my friend. I have said this before and I will say it again: Either you are in it to win it with me or you’re not. Period. That may sound dramatic, and I don’t mean it to, but it’s just reality. It’s life. It’s my life. All these things, plus more, is what I have to process through.
To be honest, (and here is where it gets even more raw) I think I had romanticized what getting sick/my diagnosis should have looked like. That my friends would have rallied around me. That they would have raised money for my medical bills, visited me, supported me, kept in contact with me, you name it. You hear about people who have life-threatening health issues and their friends raise the roof for them, right? I had none of that. And I’m hurt. Bitter. Angry. Resentful. Because it makes me feel like I don’t matter to them. I don’t know how to relate to certain people anymore after that. I’m worrying about the next breast MRI and whether I have breast cancer, and others are worrying about what so-and-so texted another person or about movies or dances. It’s PERSPECTIVE PEOPLE! It’s life! Life is in session!
Yet, lest you think I have completely lost my all of my marbles, my rational mind comes in and says, “But you don’t know what they are dealing with Heather. You don’t know their trials and tribulations.” And you know what? You’re right. I don’t know. Because I am managing my life with Cowden’s Syndrome and Lhermitte-duclos Disease the best freaking way I can. I don’t know any different! I’ve never done this before! I am figuring it out as I go.
I get that I must lay all this down. All these emotions that are jumbled up inside me. This is part of why I write on this blog. To feel my feelings with brain tumors and genetic conditions that (can/will) cause cancer. I do my best get it all out here, to process, then I get up from the chair and try to live my life the best way I can. I don’t know. I don’t know how to lay all of this down, that’s the problem. The hurt, the fear, the anger, the anxiety, the PTSD, the expectations, the resentment, all of that. Does it get easier?
I sure hope so.