Monthly Archives: July 2013

The caterpillar and we are all mad here…..

So it’s been a while since I’ve posted…not that anyone is really reading this. But if you are, I was in a pause due to the cyst in my brain. But now that pause is indefinite so I’m going to have to get over it.

I learned on Friday of last week that it’s kinda inoperable without doing some serious damage. And that it probably will stay put all nicey nice like. Probably. At least that’s what I think the surgeon meant. But I really can’t be sure.

Cause he was by far, the strangest, fucking man I have ever met. And that’s saying a lot if you know the people who I am lucky enough to meet. This guy was a caricature of a caricature of an eccentric surgeon. And that wasn’t a typo.  Imagine, if you will, a man sits next to you. A man who you hope has the answers to what to do with a thing that’s in your head threatening to destroy your calm and your hearing.  Imagine that man gets uncomfortably close to you…like an inch or two from your face…and you don’t really care cause, “fuck!Just tell me my options already”….and then he begins to talk whilst intermittently licking his entire mouth with his entire tongue every three seconds or so. And he’s fucking in your space…inches from you with that giant tongue undulating. And you are trying to concentrate on what he’s saying so you try to focus on his eyes… but oh shit, he’s now got facial ticks with his goddamn eyes that are making you dizzy. And he’s talking like the caterpillar from Wonderland except less coherent. And you think…fuck, you know this has to be a joke…so you look around the room to see the cameras and then glance at your husband for a reality check. But one look from your husband, who’s desperately trying to keep it together, and you know that it’s real and now you have to try to keep it together cause you can’t guffaw and get the answers you want… And you are so pissed, though, cause fuck, can’t you just once get a medical professional that isn’t certifiable. But hell, it’s funny and after the week you’ve had, well…you’ll take funny over doom and gloom.

And that sirs and madams…is my life in the medical community in a nutshell or nuthouse if you prefer. It’s shit like this that makes me realize that no matter what, I’m fucked. I think I need to scan it in 3-5 years…but I’m not sure cause this guy hates scans. And it might take my hearing overnight…or it might not.

And before you even ask…of course, I’m going to get a second opinion. I just need a week to get the image of tongue out of my head first.

So there’s that. I’ll deal with real life in the next post cause even telling that story makes me tired. Someday it will make me pee my pants laughing. I’m sure. But right now…yawn.

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Yep..fuck.

cholesterol granuloma(not mine)
cholesterol granuloma(not mine)

“The neurosurgeon will let you know if he or she believes that the lesion is a cholesterol granuloma (it may not be, the radiologist also said it could be another type of benign growth called a mucocele).”
-quoted from the email I received from my dr today. 

So I was right about there being something but it isn’t cancer. For that I am very grateful. But like the Lupus diagnosis…the real answer is gray. I have a lesion in my brain. And I think it is somewhat large with the rushed time scale of everything. And it probably needs to come out. I am absolutely terrified.

However, my husband did the dirty deed of looking up the details surrounding my latest health issue…and it’s better than what I first thought. Both are benign cysts. And in the info my husband found…it can sometimes be removed through the nose instead of the full open the brain type operation that leaves me feeling beyond petrified. So it’s much better than I imagined. And yet, I find little comfort in it. SOMETHING IS IN MY BRAIN, PEOPLE!!! And if left to grow…it can kill my hearing in that ear along with a bunch of important nerves.  I can’t deal with this. I won’t look things up till tomorrow.

This year is…fuck it….this past four years has been something out of a movie. Stress upon stress upon stress. And as I have nothing left to say on the brain lesion that is making me shake…well, I think I will list off all the crap for posterity.

So the past four years have included but are not limited to the following(some may be out of order due to my fuzzy state of mind at the moment):

1)During my pregnancy, my pain skyrocketed. My hips would lock, I developed carpal tunnel, and I was sick like a dog through most of it.

2)Same Pregnancy, I had to finally close the chapter on my father who is from here on known as The PsychoDad…I finally told him to fuck off  after he pulled a couple of mental fucks too many (The abusive asshole is a blog post unto himself).

3)The Cute was born and was immediately and horrifically colicky for 4 straight months. He also couldn’t get the hang of breastfeeding. I ended up pumping for six months instead.

4)I didn’t sleep for more than 2 hour stretches for 2 years(no exaggeration…between pregnancy and colick and my illness.

5) My pain quadruples. I go through months of horrible drs that do very questionable things that have now given me a serious phobia of all things medical related to me.

6)My husband and I start to fight under the stress.

7)My mother goes through a series of hospitalizations and events which diagnose her with an inoperable  cyst in her kidney that makes regular blood transfusions necessary.  She tends to use her illness to create worry in me than berates me(i.e.tells me to go fuck myself and other lovely sentiments) when I worry. She’s a peach.  But I love her anyway..cause…Mom.

8)The apartment next to us burns down in flames while I watch to make sure it doesn’t spread to ours. Later I find out that I watched as an entire family of four children and one adult die…the wife/mom is the only survivor. Being a new mom at the time…well it stills haunts me.

9)My beloved cat dies…she was seriously my child. I still mourn.

10)We start to have financial difficulties due to copays and not enough work coming in.

11)We move back to our families and move into my in-laws guest house.

12)Said in-laws hate me and take every opportunity to make me feel unwelcome (Although I do appreciate the help so I put up with it with a smile and usually a cupcake). I shouldn’t worry though, the MIL hates pretty much everyone.

13)My mother almost dies from a combination of blood loss and a severe infection.

14) At the same time as my mother is fighting for her life, my gallbladder decides to tank and I have to have emergency surgery to remove it. Have a horrendous hospital stay confirming my fear of doctors.

15)I have a nervous breakdown and almost lose my family.

16)My inlaws do something horrendous on Easter…so much that I actually left with The Cute….That shall not be named.

17)My husband and I almost divorce in the aftermath. Luckily we pulled through.

18)Diagnosed with Lupus.

19)Diagnosed with a Brain Lesion.

I think if I hit 20…I’ll need to check myself in.

And that my friends was only the big highlights.  Believe me, I know it could be worse. We could have been that family. I could have a malignancy. But it’s just the sheer number of stressful events that is just beating away at me. And far from writing it down to dwell, I keep this list to remind me that it’s normal that I’m taking this so hard. That I’m doing ok in light of the circumstances. But damn, I need a break…cause I’m scared out of my wits and I’m dead tired.

 

 

 

It’s the final countdown….(there…for those in the know, I’ve stuck that tune in your head for a few days)

So I did the MRI. And the stress is killing me in pain. This month has been the worst yet…calling for more meds than I’ve ever needed. I keep telling myself that it’s temporary but it’s been two months since my last relief. Usually I have dips in the pain. Sort of like contractions. Except measured in weeks. I usually have a week of flare and then a week off at least. It used to be a week on and two weeks off at least. But it’s closing in, and this last flare has lasted two months with scattered days of ok. Very exhausting. I know it’s a combination of the weather, illness, and stress but knowing why you are in pain doesn’t help the being in pain. I only hope that my new dr is understanding when I come begging for meds early for the second month in a row. Sigh. I hate doing that. 

On the parenting side of life, the fourth was a little mellower then we planned…we went to a friend’s house later in the evening to have dinner and watch the fireworks over the county(my friend has a house that overlooks like three or four cities worth of fireworks). We had originally planned on going up into the mountains to show The Cute fireworks up close…but the weather was so hot and he’s so four…we reconsidered. He continued to not be that impressed with fireworks anyway…but I wonder if he might have liked them more if they had been up close. It was nice regardless and we left feeling satisfied on all fronts. 

We did stop at the sister in-law’s party for a moment…they threw a massive pool party with a crap-load of their friends. It was honestly too much for me at this moment with my worry and flare so I was glad that my husband wasn’t keen on going to it as our sole fourth entertainment. They come from a different world than us…full of well to do people with perfect families. Not that ours isn’t perfect but I can’t help but feeling like we stand out like sore thumbs(or at least me). We are the alternative artsy types in a very conservative city. The Sisters were at least outwardly nice to me this time…but I always do feel like an afterthought. I know I would not be invited if I wasn’t with my family. I am not their type. I also say and do the most awkward things when I’m nervous which is all the time when I’m in their presence. So a quick cameo was enough.

We did watch a 3D movie on the fourth, snuggled up together in the air conditioning. That was a little slice of heaven. It was Ice Age: Dawn of the Dinosaurs  and I highly recommend it. Not only was it beautiful…it was a great story. I actually usually dislike the Ice Age series…usually a sea of white and full of gags..but this was a new take completely that was full of color and action. In 3D, it was a visual feast and full of family love and the coolest new character…a weasel named Buck, played by Simon Pegg. He was, as always, amazing. 

But between breaking my iPad, and worrying immensely about the MRI, the 3D movies have been at least a partial distraction…apart from the moment in Cloudy with a Chance of Meatballs when it’s revealed that the main character loses his mother early. Oh gawd! For a moment, I was a mess and cursing the movie. 

So now I wait. And wait. Hoping to hear good news…which usually means hoping to hear nothing till I finally go nuts and email my doctor and she says, “What’s wrong with you, I would have called you if there was something…relax…you need to diminish your stress”…and I say, to myself, “Fuck You… then you should have called me sooner to tell me I’m not dying” but instead write a lovey thank you and fall into a pile of relief and sweat.

Cloudy with a chance of Gray?

headstormMy unlucky streak hasn’t let up. I haven’t been really in the mood to post as I’m tired of hearing myself in the gray. It’s not me.

In the beginning of this medical nightmare, I was just worried….but I was still able to live my life normally. I had pain but it was mild and came and went sporadically. I would spend my weekends in the clubs dancing. I was always road tripping. I loved to move and meet new people.

Now my life is small. I stay home the majority of the time. In some ways, I love my small life…my husband, my son… but in other ways, I feel like I’m a shell of myself. I don’t laugh very often. I cry on a dime. I enjoy things still…watching my son play, snuggling with my family, creating on a good day. But if I’m honest with myself, it’s like I’ve changed into a completely different person. One I don’t recognize. One I feel sorry for.

And then there’s this week. I had a brain MRI last Saturday…to check on some “fatty deposits”that were found last year. You see, they can’t really tell if they are plaques or tumors without rechecking them. So I was understandably nervous…and more so when the tech’s attitude changed post scan. I am very good at reading people. Very, very good.

I knew they saw something…but I was reassured that it was because there was something to see even if it was benign.  But then I got the call…a call that they needed additional scans. I instantly felt like I was punched in the stomach but immediately rationalized that they screwed up and needed a couple redone. So I tried to schedule it for a Saturday and told them to add the neck scans I needed done also(my rheumatologist is ruling out a pinched nerve or disc problem). The man immediately said that he didn’t have an opening for this Saturday (today) and so how about Monday. I asked for the following Saturday…and was told that it had to be sooner…not later. The breath left me in an instant.

So now I’m terrified and scheduled for Monday. WTF.

And then to add to the merriment, I dropped an entire cup of scalding, freshly boiled water on the back of my hand while I was making coffee on Fri. For a moment, it seemed like I was destined for the ER again because, holy fuck nuggets, it hurt like a bitch. But it calmed down after about four hours of bad pain and what looked like blisters at first. Then on Fri night, I developed another cold. Yes, another one. Cold #2,000,000 of this year alone. *sigh*

And then to finish off the week proper…my iPad, the toy I love most in all the land, slipped out of the bean bag case it was in and smashed to the floor. *double sigh*

Trust me, I know that’s a first fucking world problem. I am so lucky to be able to have any toys…and really, the TV and the iPad are luxuries I shouldn’t have. We should have been so much more responsible and put that in savings. I shouldn’t have it to mourn. But when you spend so much time in bed. So much time in pain. Those technological wonders are a lifeline. They are the distraction that helps me cope with how small my world has become. They give me something to share with my son when I can barely move. They break down the walls of my house and give me the illusion of still belonging in this world I desperately love.

Cause I can’t go in the sun (it causes a flare).
I can’t go out in the heat(causes a flare and makes me nauseous and increases the pain).
I can’t make plans(cause if a flare hits, I bail…and since I’ve spent so much time alone…my friends are all booked up with healthier people who can enjoy their summers).
I can barely work(too much pain so I can only work in very short shifts).
And even when I force it…I go out and “have fun”…well, it’s always tainted by pain. Always.

I feel so very alone. And almost like I’m already dead and everyone has already moved on.

So when I think about how I could really be dead…how there might be a tumor on that scan. I actually can imagine just what will happen.

And I just can’t believe this is happening to me. It’s like a cascading joke. A nightmare that I can’t wake up from. Just as I’m starting to get my life together…get a pain management regimen, doctors who say they can help…a diagnosis. That after all this time searching for an answer…that it might be game over.

I can’t bear to imagine not seeing my son grow up…that he might not have his mommy. Or worse…someone in my place.  It just can’t be. Please don’t let it be.

Cause I can deal with the pain. With the colds, flu, accidents, and time in bed. I can deal with broken technology, giant copays, and financial ruin. I could happily live out of a box. Just please let me spend the rest of my life being there for my son. I just want to be there to kiss his booboos. I want to hold him and smell his hair….hear his laugh. Please bring on the pain…it pales in comparison to the joy I see in his eyes. Take my legs, my eyes, my hands….just leave me.  I can’t have cancer. Oh, please don’t let it be that.

Just the thought of him growing up without me, makes me so sick to my stomach and causes this sobbing panic that I can barely control. He’s my universe. The only consistantly good thing I have ever had. The most permanent and unconditional love I’ve ever known. And I have so much more to give this world. I want desperately to leave a legacy for him to be proud of. I don’t just want to be a faded memory of a sick woman in a bed. I was and am so much more than that…if only I get the time to work on it. I want to be the best person I can be…for him and for me.

I want to walk him to school for the first time…
I want to see him fall in love…
Find a passion…

Oh god I’m losing it…It’s just too much this past year… almost losing my mother. Having back to back health issues, moving away from Seattle… And there’s been so much more in the past few years…I’m primed for catastrophe.

Oh God, I’m so scared.

I hopefully make it through Monday…going to give myself a stroke with the worry. And I hope they get the report fast…cause another thing I’m supposed to avoid? STRESS! Lol…that’s a serious joke.