Here’s the blog I was featured on the beginning of the year. The blog author does great work promoting the incredible stories of those who are brain tumor survivors.
So, this dizziness thing is getting really old, yet I know I can’t hide from it and I’m a bit scared to accept that it’s happening more and more in different areas in my life. Funny, as soon as I typed, “Scared to accept” it hit me like a ton of bricks. All this boils down to is fighting the inevitable. I need to accept this, and I’ve known that for quite a while. I know I am scared, and I know I need to accept brain tumors and all they bring with them. I am scared of the unknown, and I am scared of what my life will look like in 2, 5, even 10 years from now. What type of life will I be able to lead with (chronic) dizzy and balance issues? Thanks for nothing Lhermitte-duclos disease. Eff you.
Anyway, what is triggering this post is on Sunday at church I noticed a new thing. I guess there is always going to be “a new thing” with 2 brain tumors, right? haha. When I closed my eyes to pray, lowered my head, everything began to spin. Ugh. I mean, really. Now, this? I am forced to accept that when I’m praying to my Higher Power I have to navigate things spinning? UGH UGH. I can’t even.
Yes, I know that others have it much worse than I do. I fully understand that. Yes, I know I have much to be thankful for. Yes, I know that I am able to still do so much, and I am doing all I can to focus on that: exercising, volunteering, working when I can, spending time with family, etc. But, that doesn’t mean I don’t get tired and overwhelmed. So, that’s why I am thankful I still have this blog when I can write and whine when I need to. Today I need to.
I don’t know what tomorrow will bring. Probably more dizziness and vertigo. And, I sure wish it didn’t. I wish and wish and wish….blah blah blah. I guess I need to stop “wishing” for so much and work more on the “accepting” of what is.
But, I have to own my truth that I am just a bit sad today.
…I didn’t have a care in the world.
Today, I am overcome with fear about the 2nd brain tumor. When it grows, how will I feel? How will it affect me? What will happen to me? When will I know? Will I change? What will happen to my ventricles? Will it be like last time? Will I get hydrocephalus again? Will I need to have a shunt put in? I’m afraid. I am really afraid.
Today, I really do not like having 2 brain tumors. It is Thursday, so I think I will share this on The Twitter for #BrainTumorThursday. How appropriate. Although, I’d give almost anything for it NOT to be appropriate.
It seems only fitting that I saw Dr. D (neurologist) this morning. I can’t believe it’s coming up on 3 years since the brain surgeries! Regardless of timing, seeing him (and the neurosurgeon) always leaves me a little emotionally drained.
I told him about some symptoms I have experienced lately, and I always seem to struggle with which doctor to tell my symptoms to. Tingling, dizziness, etc., that could be caused by tons of things, right? Anyway, I told him what’s been going on (I started a new medication to help manage my anxiety and depression), and he had said, “Well, you did have brain surgery,” but not in a flippant way. He said that since the brain surgery my body may need more time to process new things (medication) and I should take it every few days, starting out.
He also said these things I’m experiencing could be par for the course (because of the surgeries) and as long as they aren’t non-stop, he’s not super-concerned.
Lastly, he did all his neurological tests, and then said, “Dr. K sure did a good job on your surgery.”
At times, dealing with Cowden’s Syndrome takes all my energy that I have none left to worry about the 2 brain tumors I have. (Wait. Is that a good thing or a bad thing?)
But when Thursdays come around I take to The Twitter and do what I can to raise awareness for brain tumors, rare benign and malignant ones, too.
This past Thursday I tweeted:
And you know what? I am mad. Mad that I don’t have a good-paying job anymore. Mad that I don’t have the stamina I did before surgery. Mad that I don’t have the l life I once did. Mad that I don’t have a carefree attitude. Mad that I am struggling. Mad that I now have so much worry of the brain tumors growing or having cancer in my breasts or someplace else in my body. Mad. Just effing mad.
For these past (almost) 3 years, I have run on fear. Fear of brain tumor growth or cancer anywhere in my body. Fear of the unknown. Fear sucks. Fear is a nasty S.O.B. I get all that. And, what’s more, I get that as I’m writing this post: Garbage happens to EVERYONE. Anytime, anyplace, anywhere. It just so happened that mine was in the form of 2 brain surgeries a week apart and a diagnosis of 2 rare diseases called Cowden’s Syndrome and Lhermitte-duclos Disease that pretty much no one ever has heard of.
I get it.
But, I also get that for these past few days…I’m mad and it’s OK. I know how important it is to express my feelings and thoughts in a safe place (this blog). I no longer will ignore my feelings. I am mad about all this crap and I own it here.
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
Yesterday I had one of my ever-famous brain scans, although this one was to check my pituitary and not my cerebellum***. Still ruling out diabetes insipidus although the polyuria has all but vanished (kinda). 🙂 How’s that for a change-up?
Here’s just a few things I’ve learned about MRI’s since starting this brain tumor journey almost 2 years ago and I wanted to share them with ya’ll:
- If you don’t have anything to take to relax you before going into the tube, try some NyQuil. Really. Normally I take Ativan but this go around I worried about this cough that has had me for the last 3 weeks. So, NyQuil really seemed to make sense at least on the anti-coughing front. MAN OH MAN! Let me tell you – I was feeling A-OK when Technician N was getting me all prepped to go. I knew I was #DrunkHeather** and it was awesome! I didn’t care about going into the tube! N remembered me from my other scans and he said, “Um, I seem to recall you’re claustrophobic Heather?” – and my response in the future will be, “NOT WITH MY FRIEND NYQUIL I’M NOT!” N was laughing at me when I was trying to talk – and I was having such trouble with my words. 🙂 It was swell. Anything that helps to take off my anxiety for anything brain (or pituitary, in this case) related I am ALL over it.
- Wear some cute, funky, socks. I like to keep my feet uncovered while I’m in the tube (to help ease the anxiety); since the technicians will be seeing your feet the entire time why not make sure they are looking good!
- Make sure you have your wallet with you at all times, but especially when you’re checking in at the hospital for a procedure. There’s nothing like FREAKING THE HECK OUT when you dig in your purse for your wallet AND CANNOT FIND IT! Thankfully I was able to check in without having to show anything. (NOTE: You know you go to the hospital A LOT if you can check in to a department and the women up front know you by name! That’s where my post title came into play. And finally, Mom found my wallet in my room. WHEW!)
- Try not to “What if” too much. (At least 5X during my earlier brain scans I thought, “I sure hope we don’t have an earthquake while I’m in here. What if something happens and they can’t move me out of this?”) – that’s just crazy talk. Don’t even go there. But, if you are prone to struggling thoughts during the MRI? Try the NyQuil. REALLY. I kid you not, I only had the “What if” thought once yesterday. That’s improvement folks!
** For those of you that don’t know me, I don’t drink. So, this hashtag is just a funny play on words. 🙂
*** Here’s a #braintumorthursday (Twitter) post too!
Except when you go to the neurologist office for a check up – and you have to think about them.
I saw Dr. D yesterday – he commented that it had been more than 6 months since he’d seen me. I’m not sure why or what happened – but I think it was because of my subbing job in January that caused me to push back this appointment. He asked when my next MRI is with Dr. H (the neurosurgeon), had me do all the “close your eyes and touch your nose, walk across the room with one foot in front of the room to check your balance, push against my hands, etc.” stuff. Those tests always make me nervous, because I never do well with the one where my I close my eyes and I have to touch my nose with my left hand. I think the brain tumor (the large one) caused the left side of my body to be weaker than the right. I remember Dr. K doing those same types of tests with me before the craniectomy and doing that test was SUPER hard then. I think I showed some progress yesterday. Dr. D said I was doing very well, as “having brain surgery is really hard.”
Yep. You are right on Dr. D.
I don’t want to take Topamax and Gabapentin forever. I guess I’m feeling differently about this since I’ve started to train and go to the gym, but I just don’t. I just don’t want take the stuff any longer than I need to. But if my head starts to freak out and I get a bunch of severe headaches – then I won’t have the option of weaning off them. My brain will dictate otherwise. He explained more to me about the benefits of both medications (and I’m only concerned of the negatives, obvi). He said that Topamax is an appetite suppressant (which I’ve never experienced ~ why didn’t my body get the memo on that?!) and that Gabapentin can help my moods stabilize (in addition to their anti-headache properties, of course). We agreed (YAY!) that I can take 50 mgs. of Topamax at night (down from 100) and decrease the Gabapentin to 600 during the day (down from 900). Let’s see how that goes. I’m encouraged because I feel like I’m making progress towards another one of my goals: to one day be off both those medications.
Now on to another story: The Gym.
I have worked with a personal trainer for the last 5 weeks or so. Can you believe that?! I love it. I. LOVE. IT. Except – don’t ask me how much I love it when I’m there working out with her. 🙂 Ask me when I get home – so I can tell you all the exercises I’m doing!
Next week I’ll be reaching the big 4-1 (GAH!) – and this was just a decision that was long overdue. I have tons of DVD’s that I use at my home and I love them, but it wasn’t getting the job done. There’s something to be said for having someone there to help you with correct form and to answer your questions. AND, there’s something to be said for getting on the treadmill and walking at a 4.0 incline for 4o minutes too! :)PS, Today is Thursday so this post is in honor of/and to support #braintumorthursday.
Last year when I got diagnosed with the I felt so completely alone. Utterly alone. No one understood. No one got it. No one could or would really understand what it was like to have your head cut open…let alone 2 different times.
But then I found #btsm on Twitter (and #braintumorthursday). Within this community of survivors, caregivers, etc. there has been a feeling of camaraderie that really gives me peace. That really helps me when the days get bad. I know of a place where I can turn, reach out, vent, whatever the case may be – and people “get it”. They really do. Finding this community has done wonders for my soul. I’m very thankful.
Through Twitter there’s another hashtag (#raredisease) and I tweet there often about Cowden’s Syndrome and I include pertinent hashtags that I think might get my tweet read by others who “get it” too. I’m happy to say that I’ve connected with another person who has Cowden’s Syndrome. Now, in and of itself that news doesn’t make me happy – but what helps me is that this “rare disease” isn’t so rare…or, rather…the Internet really is a small place. And that Twitter and other forms of Social Media can be used for amazing purposes. This person has chosen to share her story of CS and this in turn helps me. Helps me SO much.
I thought I was the lone survivor in this world of Cowden’s Syndrome. I thought I was the lone person walking this path. I am so thankful to connect with others who are strong examples of courage and faith. I know I can lean on them when my road gets bumpy.
Please visit her blog here.