Thursday, February 25, 2010

Nightmare

This month has been the worst month of my life. And that is saying a lot, because I have had some bad ones. I wake up in the morning and for a split second, everything is a blank slate, I don't recall the details of what I am worried about, or that I have any worries at all.

And then it all hits me, the knowledge I now know. What I did not know one month prior, and I am terrified and consumed and fearful and I don't know why I should get out of bed. Or once I do, how I will quiet my mind all day. I feel like I stuck in a constant state of fear and panic and sadness.

I feel like I want to change everything all at once. I want to move South, I want to leave Maryland, I want to travel, I want to pack up everything and start with a clean slate. My husband wants to change nothing and we are fighting like cage fighters about every decision. We've fought about the bank accounts, my Sephora purchase, Valentine's Day, last Christmas, living wills, current wills, healthcare power of attorney, going to the Olypmics (long story), going to dinner, our gym membership, taking off work, moving to a state that allows physician assisted suicide, Ethan's private school and selling my car. Oh, and the snow on our roof. Nobody wins, no decisions are made, but we go to bed exhausted and spent from the process. Every single night.

I am floored by what has snuck up on me. All of a sudden, my left hand skills fine motor skills appear to be gone. I cannot button things, tie my son's shoes, and I don't know how many wine glasses I have dropped in the past week. My hands shake, my muscles twitch and I am in fear of what my own body has in store for me down the road. When I drink with my left hand, my brain does not know where my mouth is, I end up six inches from my destination and pour water down my shirt. I forget this happens and do this at least twice a day.

I know I should be enjoying each day, but that is a trite expression, and to try and live it is a lot harder when you are watching everything crumble around you. My words are occasionally slurred, each time that happens I feel like I've been punched in the stomach. My creative mind seems intact, but I cannot spell and I do not know the rules of grammar. (Grammer?) I cannot read aloud. Writing seems .... hard.

And, then there are the big moments, when I am so stunned and saddened that I sit there in shock and try to process all I have lost. And all that I still have to lose. At dinner the other night, a friend asked where my son had gone to kindergarten, and I did not know. I could not come up with the name of his school. Nor could I remember what grade my son is in now.

My neurosurgeon is stalking me because my MRI was rescheduled due to the blizzard. My brain is so screwed up, I KNOW but I cannot handle knowing. I was ready to cope with all of this, and then when it got pushed back, I could not cope anymore. Like I had a finite date in mind, and the lack of control and having to adjust to that was too much. And now I cannot get it together.

I would like to say I have been handling this all with grace and dignity. I have not. I have snapping at my husband, at my son, and prone to crying fits of unimaginable power. I hurt. This weekend was the worst, I could not wrap my head around my mind and quiet it all down and I broke. I wept so hard and for so long that I ruptured a blood vessel in my eye. And then I wept about that. And then THAT hurt.

To say I am feeling like life is unfair these days does not even scratch the surface of the pain. I read a book at Alzheimer's and got upset that the man dying was well in his 70's and had lived a long life *(he's so lucky to be old!), I watched that movie about that dying kid that needs parts from her sister and thought, she's so lucky to be able to say goodbye to her family and not have her brain affected. I am thinking a kid with cancer is lucky. I know. Don't judge me.

And now I am off to an appointment with my therapist. I am happy for that.

35 comments:

Suburban Princess said...

I am sorry you are fighting with your husband. It is stressful for him too - I imagine he is feeling completely powerless and needs to exert any way he can.

*hugs*

Brenda Glover said...

My heart is hurting for you. There are no words I can find to comfort you and give you strength.

Margaret said...

Jenny I am praying for you and your entire family. I can't imagine what you are going through. I hope that knowing so many people are praying for all of you helps even just a little.

Dee said...

Just reading this made my heart ache for you. I'm sure everything you're going through is "normal" but damn it can't be easy. I'm sorry honey, so sorry for what you're going through. I wish a peaceful day for you! Hugs!

Mikaela said...

What you are going through and what you have to deal with is so hard. It is hard not to fight with so much stress and anxiety going on in your life.

My thoughts and prayers are with you and your family.

Terri said...

I can't imagine what you're going through physically and emotionally; I have no words. But I can tell you that I'm praying to God to provide you with strength, comfort, and peace -- in short, to see to your needs as He knows what they are.

laurie said...

J -
OK, that drink sounds like it is necessary -- we have some catching up to do...Do you want to get together tomorrow (Fri)? We can do just us or add in the families.

I am sorry for all that you are going through. But you are so brave and awesome and I am in awe of you on a daily basis. I know that your J feels the same way, but that he is probably scared and worried - 2 things men do NOT like to be. I know that is hard to remember in the heat of the moment. Listen, know that we are here for you. We love you. Whatever you need, just say the word.

Hugs,

Texas PQ said...

I'm a total stranger to you, but I've been following your blog for quite a while. I've been so worried about you this month waiting for your tests. I've been praying for you and will continue to do so.

You are one of the wittiest, brightest and bravest people I've ever read about. You have every right to feel what you're feeling and should have no guilt for it.

Know that you and your family constantly in my prayers. I wish there was more that I could do.

Be kind to yourself.

Karen said...

So sorry. I know I have never met you, but I am thinking about you.

dddhokie said...

No one should ever feel bad about a Sephora purchase...ever. :) Hugs and Love your way.
Amanda

Evansmom said...

I feel for you also. I don't know you but I feel for you.

Mala said...

I wish I had somthing awesome and powerful and inspiring to say. I do not.
But please know that I'm thinking about you, sending you good vibes.
Do what you need to do, don't worry about the rest.
((HUGS))

Lori said...

Jenny, I love you.
There's not much more to say than that. Well, that God loves you. Even if you don't feel like it (and I SO KNOW THAT FEELING), He does. I know it because even though your words are heartbreaking and my heart aches for you, I still see YOU in your words and know that in the midst of all you are going through and feeling, you're not alone.

Oh, how I wish I could do something to make this all better. Just know you are loved and lifted all the time. xoxoxo

mommyneedsacocktail said...

Jenny, Truly I have no words that won't sound trite or will give you comfort. I cannot imagine what you are going through. My heart aches for you. I am so sorry.

Anonymous said...

Jenny,

The courage it takes to share your struggles with the world astounds me. I don't have the words to express the sorrow I feel for your fight. Just know you and your family are in my thoughts and prayers.

Red She Said said...

We only know each other through blog land, but trust there is no judgement, ever. My thoughts are with you.

jessalyn said...

i have been following you for a while, but don't speak up too much.
i can't possibly find the words that seem even slightly good enough.
but i can say you are amazingly brave for sharing this, and a true inspiration.
i am keeping you in my thoughts and prayers and sending all the positive thoughts in the world your way!

Dena Gregory Fisher said...

Jenny, you ARE such a strong and amazing woman, mother, and wife! Don't ever doubt yourself. When you're not feeling strong enough to lift yourself up, remember that WE ARE ALL HERE to help lift you up. You and your family are in my thoughts every day!

Anonymous said...

Jenny, there really are no words. I can only assure you that I cry with you when I read your story. And I pray for you. And I promise to never, ever judge you my friend.

Associate Girl said...

I don't think you are supposed to always handle this with grace and dignity. Get really sad and then get really angry. You deserve it. And then please write that book.

Blair @ Reasonably Swanky said...

There is probably nothing I can say to make you feel better but I want you to know that I am thinking about you. And praying for you and your family!

xo
Blair

Emily said...

Bon courage, my friend. You are strong and surrounded by love and light. And you have every right to be really fucking angry and sad and overwhelmed.
Sending out light and love to you. Hope you get it.
XO

Nonflammable said...

Know that you have a right to feel the way you do. You need not try to rationalize what would be a normal reaction for anyone in these circumstances. Try to stay positive but scream, yell and cry to get there. The most amazing things can and do happen. Never forget that and do not give up on yourself. Keep on bloggin. This is an excellent outlit for you. I think several of us would be camped out on your doorstep to help in any way possible.

Carrie Root said...

Oh Jenny, I am so sorry that life has given you these horrible twists. I think you are so brave and so often funny in spite of everything you are facing. If I could have half of your courage...You are always in my thoughts and prayers.

Slamdunk said...

You continue to be in my prayers.

Terri said...

Continuing to pray and pray and pray for you and your family.

KirstyCat said...

There is so much raw pain in this - It's great that you're expressing this & being honest. '

You're well-loved but that's not always apparent & when you're scared & down & out, nothing makes sense.

I'm pulling for you.

Anonymous said...

All I can think of is that as a mother, of two young sons, I CANNOT imagine your heartache.

My father passed away six months ago after a two year battle with a brain tumour I don't know what you have, but his was a stage 4 gliobastoma. He was 58.

The symptoms you described in your last blog post sounded an awful lot like what my dad went through. When he was first diagnosed he was given less than a year. He struggled for the first year and then had a summer of what appeared to be a remission. In the end, he was just too weak and the cancer too aggressive for chemotherapy.

My dad kept his white blood cell count up for almost a year and a half by drinking this juice. It tastes like shit, but it is amazingly fast at increasing the white blood cells, thus allowing treatment to continue. Make it fresh, with a juicer, and drink it right away.

60ml (2 fl oz) of carrot juice
60ml (2 fl oz) of apple juice
60ml (2 fl oz) of beetroot juice
60ml (2 fl oz) of broccoli juice

All I can is hope for you, You are much younger than my dad - try and stay positive, try and laugh a real laugh as many times a day as you can.

All you can do is fight.
Love your son, LOTS. Hug him and kiss him and enjoy every moment you can.

I hope you are alright. You will have good days and bad days. BE STRONG! You have to fight, whether you are fighting for a few more days or a few more years, you can't give up.

Terri said...

Said it before, but since it's still true, I'll say it again: Praying for you.

Anonymous said...

I find with my diagnosis that I have to allow a specific time of day to allow myself to feel the pain, the uncertainty, the absolute panic or I will end up in a ball on the couch.Sometimes it is an hour and sometimes I cheat and it is much longer. But it gives me a defined time to be out of control and frightened. If you need someone to talk with I will leave my contact information. Know that you are not alone! jaggars.anne@gmail.com

The Four Week Vegan said...

I am so sorry. I'm filled with sorrow over your situation.

KCZMA said...

I so, so, SO understand where you are coming from. My left side has lost some basic functionality as well. I can't see as well from my left ey & it is slightly closed all the time. My hearing is almost gone in that ear, and I am continually leaning on my right leg because my left is so weak. Unfortunately, we know that this si a side effect of the radiation, and cannot be corrected. For YOUR sake, please, have the MRI done. Let the docs know what is going on inside your brain. I understand your fears. I understand your stress. I understand your non-unstandadbleas I have them with my 6 year fights with hubby, If you ever want to talk, you know where I am. Wish I was still in Reisterstown, but... anyway. I'm here.

BonBon Rose Girls Kristin said...

I'm so sorry things are getting so tough for you. It is certainly most unfair. I'll be praying for you, your hubs and your lil' man!

Unknown said...

Be strong!

Meagan and John said...

YOU KNOW... I am a few months to late, but can I fill you in on a little bit, in December, I pummeled into the pitty party and turned the outside world off and hid away, I had good reason to, nothing like being told that your medical condition that you can't help or control could be why the state may or may not take your son a week before Christmas to send anyone into a deep dark depression (talk about bad grammer, hope you know what I am trying to say) Either way, I am slowlly trying to find my way out of the tunnel.

In addition to having to deal with medical issues at a very young age (I was only 24 when I became disable, maybe only 23, can't remember exactly) has been rough enough, especially when people point out I am way too young and healthy looking to be disabled--thanks guys, your not helping--but then to find out to find out I might lose my family and a lot of other legal allegations have hit home too, I even had to stop blogging (because my blog was being dragged into the allocations) today for the first time I got onto one of my blogs and blogged since december and was thrilled to see you had a recent post and had been reading your past posts, I wanted to say I am sorry I sorry I deserted the blogging world, I wish I could have been here while this was going on so I could have offered support when you needed it most (you still probably need it)

I am prayin for you...

if you are ever feeling like no one else knows what you are going through you can always e-mail me @ lewis4higher@live.com I might not have a brain tumor, but I do have a Chiari malformation and a lot of other medical issues, and the doctors still can't tell me what is causing my seizure disorder, I understand the anxiety of not knowing what tomorrow will bring, the pains of 'living ever moment like it might be your last' cause it might just be, I even get the dumping the glass of water in your lap, but it doesn't matte which hand I use I still tend to spill on myself and always forget this until after I am soaked (and when I do it in public it is even more humiliating) I have 5 yr old boy and he just graduated from head start and it was a huge deal for me and when my husband was like 'why is this such a big deal' i told him cause I wasn't sure I would be around for any other graduations

My husband and I fight all the time, over stupid stuff, cause we are both scared and just don't want to fight about what is truly bothering us...either way, just wanted to say, I am sorry, and that I am praying for you (oh, and you can moderate this out, you don't have to post it for the world to see, just wanted you to see it)