I always title my posts before writing. Sometimes the title works, other times I just type and it ends up going in a completely different direction. I don't think this one will…optimism, as I have learned, defines my natural character.
My day today stunk…however. My muscles ached so bad just to get out of bed. I don't purposely groan at Steve when he tries to get me up…but it's getting harder. I was awake a bit with leg pain and a weird stomach issue (might have been that I was full after eating lunch at Applebee's on Easter with Steve and the boys…SO much fun!!). I really don't remember anything else but getting out of bed…the next thing I remember now is having a REALLY bad headache while dropping Josh off. On my walk back to the office, I remember feeling really heavy head pressure. I reached out to grab our Welcome Center desk and completely blacked out…hit the tile floor and just laid there. I really don't remember falling, just the initial side swipe impact to my left eye from the Welcome Center. After I came to, I remember rolling (literally) into the hallway hoping nobody saw me (we have glass doors…what you see is what you get…just hoping nobody was looking this morning!). I called my doctor and he had me come-in to get checked-out. I knew I had things to get done…though I had no clue what they were…but I was just annoyed and frustrated that once again my health ruined another day.
I found myself face-to-face with a general physician and a very stern Dr. A. The physician was great…checked my vitals, checked my head bruise and even did a quick catscan. Besides being dehydrated and low blood sugar and my normal low blood pressure, everything came back fine. They even checked my pacemaker which showed the event as it unfolded…heart rate decline…heart rate slow…heart rate slowly increases to a normal rate. The pattern was different than previous incidents. Oh boy…a new issue to add to the list! Frontal lobe tumors can cause these blackouts. Although I wasn't exactly following doctors orders either…it was a warning sign.
I was angry, but my optimism shines through. Up to this point, it's the one thing I have that gets me through cruddy days like today.
But that all changed in a matter of minutes.
Dr. A came in, shut the door and sat down. Sitting down is NOT a good sign with him. He was sitting down the last time I saw him when he told me the tumor was not responding to the treatment. He was sitting when he argued with me the day I was told my tumor shrank. The only time he stands is if something is not right in his understanding or if he has lost control of the moment. Sitting down means he is serious, he has a plan and watch out.
What came out next cut me to the core. I can't forget his first few words, “Bethany, I get that you are optimistic and you got faith, but your coping skills suck.” He stopped and just glared at me. He asked me how I was “resting.” I made time between the church picnic, working, late meetings, leading Wednesday night with our families, preparing for Easter, trying to get a house, helping Steve get ready for school, trying to have time with my boys…getting Easter together for my boys…oh yea, I was totally taking it easy. I wasn't using my cane or the scooter much…I HATE USING THESE!! Yes Dr A I have stress in my life…but it's not going away anytime soon.
When I was done making excuses…I'm a fighter too by the way…he held up one finger (not that one…the “Wait a minute” sign). He reached in his folder and said, “This is your reality” and held up the MRI image from my recent scan taken during my last radiation treatment. I thought about posting it…they had the nerve to email me this Easter morning before church…granted, I asked for a copy…but Easter morning??!! I saw the scan…a big white blob on the frontal lobe and a weird shaped blob on the perennial lobe. But at that moment, something clicked. I didn't know what…but I was following him…and he knew it.
He took the next few minutes to state my reality. I am living with two malignant brain tumors that (thus far…I added that) have not responded to the last treatment cycle. I have been given a heavy dose of chemo and guided radio surgery within days (I have the numbers, but right now numbers don't mean much to me…they don't really make sense) and running on oxycodone. I've lost weight and only started eating solid food 2 days ago.
In his words, “Your optimism is keeping you from coping with reality.”
Oh crud…he had a point. I was running a million miles an hour, pretending like none of this, brain tumor cancer stuff played a role in my life. I was taking the changes with stride because, well, what else is there? I was forcing myself to be strong, because everyone is watching now. I've been told, “Oh Bethany, you are SO encouraging…I look up to you.” I had to meet expectations. I have a husband, kids, job and a life that…until today…included words like “brain tumor” and “cancer” only in blog form. It was there…I just chose to avoid it. I'm pretty good at that.
But today, I was called out and really, I had no immediate response. I knew he was right…no way was I allowing him the verbal glory in that moment…but wow, the truth hurts.
I haven't really made any strides dealing with any of this. I still keep telling myself, “Everything is going to be fine.” In reality, sometimes I feel like I'm a little stick figure in a cartoon with a big, fat question mark dangling above my head. Literally everyday for me right now is a question mark. I can plan all I want, then the tumor decides to press on my frontal lobe in the right moment and my day changes…like today. I'm not okay…sometimes reality stinks. That's allowed…just doesn't sound as fun though.
To me just talking about my day today is a downer…let's go back and talk about how GREAT Easter was or how fun it was taking the family to Walmart yesterday (seriously…we had FUN…the little outings are so fun sometimes!). Perhaps I should post the video I took after Walmart of the boys faces as we went through a car wash…it was GREAT! For five bucks, I have something fun to do with the boys this summer! I could go on and completely focus on these times because those moments outweigh or perhaps balance days like today.
Reality is that my frontal lobe tumor measures close to golf ball size (but smaller). I heard that it “shrunk” and then grew…a bunch of numbers…but this was the first time I was told “golf ball.” I was pretty optimistic about it with Steve…I said, “It's not a baseball.” He told me I needed to literally hold a golf ball…I guess I have something else to do tomorrow. But just to clarify something…the numbers the techs have been reporting back reflect diameter…now they are focusing on both circumference and diameter being that the shape changes consistently. Also, they have found a possible lead on a team wanting to take a look at my case…after the rescan on the 23rd. I just don't get worked up over numbers and “resembles the size of” statements. I want to know what can make it go away…now. That's what bothers me.
Reality is every time I decide to walk without a cane or go longer distances without a scooter, I'm not only making my CIDP worse, but I'm taking a risk with the pressure on my brain. That's why I've been getting headaches…a lot. I've just been throwing all of this off.
Truth is, my brain isn't working at all like it used to…not that I can remember. Most of the time I'm pretty much in the conversation, but I lose my focus and I hit a mental block a lot. Only certain people notice because they give me time to catch-up.
Truth is my hearing has decreased…and I have a neat little device that I sometimes wear that amplifies sound and connects to Bluetooth. But it's noticeable. Today, after my appointment, this was the first change I made. I've had it
on the rest of today.
Truth is, I hate talking about changes, pain, brain pressure, tumor sizes…it's really a drag. It's a mood killer. People see you “offline” and it's just different. It's SO easy to spot those who read this blog, verses those who don't have a clue. Sometimes, those days I just want to go back to the Bethany of June 2011 before all of this saga started…for those days I intentionally seek out someone that I know is hurting that has a need or needs a listening ear that I can provide. Those days I seek out friends I don't really know well or those way too busy to read my blog. Somedays, I just want to be normal…or shall I say my old normal.
See…I told you I'm pretty good at hiding under my optimism.
Something about this new reality I'm finally trying to really cope with…I'm learning more about myself everyday. Funny thing is, it reminds me how I'm just that much more important to God. All of the things I hide, He knows. All of the things I think are so important now, He ignores. He knows my fears. He sees my heart. He has wired and designed me for this very moment for a plan only He knows (ain't that the truth!). And by the way…I'm really clinging to that aspect of my reality.
See, I told you it would end with an optimistic tone. It always does…seriously! Sometimes I get annoyed at myself…but I end up smiling! (Don't read too much into that…I'm allowed to sound a bit off).
Know where your optimism (or lack thereof) comes from. Find out what drives you and it will tell you a lot about your character…the good and the not-so-good (I think they call it “areas for improvement”). If you know someone going through a hard time, don't make them live up to higher expectations. Sometimes the best friends in life are the ones you call when reality hits and they go, “This sounds longer than just a lunch conversation…I'm making time that we can really talk.” The people I rely on the most these days call me or personally drop by just because they want to hear me talk…even on the bad days. Most importantly, the people I've really come to admire are not afraid to exercise “gentle bluntness”…reality in its purest form.
Makes you think…see, even with two tumors I can still offer good advice!
Good thing Dr A never mentioned a bedtime…but it's my area for improvement…tomorrow…