Years ago, before Harrison was created, I watched a movie with my then-husband Mark. It starred a few of my favorite people — Mark Ruffalo (who incidentally has weathered an acoustic neuroma brain tumor), Amanda Plummer and Debbie Harry. The movie made both of us cry. It was called "My Life Without Me." It's about a young mom who finds out she has terminal cancer and vows not to tell anyone. Rather she wants to make plans. She doesn't want to live the rest of her short life making her children and husband sad. So she makes a list of things she wants to do before she dies. On that list is to kiss her children as much as possible, have an affair, smoke and drink, find her husband a new wife, etc.
My Life Without Me
After Mark and I watched the movie we were sad, but we had a discussion. We agreed that if it happened to either of us we would want to know. So we vowed to tell each other. Then we talked about if we had kids, would I want to find a new wife and mommy for the family. And vice versa. It was something we never agreed on, but discussed a lot. And we figured, well, we will probably never be in that sad situation anyway.
I'm feeling rather sad today. I am not sure why. Because generally I am very upbeat and happy. I have lots going for me. And I was very busy at work today. So all that's good. And the best thing of all, I have a benign brain tumor — not terminal. But the fact that it's serious surgery still scares me. A lot.
I've given lots of thought to who I want to raise Harrison if something horrible happens. My dear mother is very sick and currently in a year long chemo-type treatment. She isn't healthy enough to be a parent to my little boy. I'd always thought that my best friend of 30+ years, Alicia, would be my child's caregiver if something were to happen. But she has two children of her own, a demanding job and oodles of step children. Seriously, oodles — she married a Catholic guy.
I know one things is for sure, I want Harrison to see his small family and be part of their lives. I also want him to spend time with our friends whom he has come to love and trust. So, ultimately I have decided on Emily Elkins. I've known Emily for a few years, but we have only become close within the past year. Crazy, I know. Crazy that I would trust her with the one and only person I love more than life itself. My life. My Harrison. But I do. She's responsible, fun, kind, smart and all the things that would make a good provider, caregiver and second mother to Harrison. It makes me sad just typing it. And I have deemed Zachary Matthews as Harrison's godfather — now and forever. These are the two people I trust with my life, my son and the two people who know absolutely everything about me.
I first asked them officially when we had all been out drinking Four Loco (not joking) and wreaking havoc on Tulsa. You know how sometimes when you've had too much to drink you start getting teary and emotional? Well, I don't get like that often, because I hate tears and crying. But I did. I asked them. Which was a total buzz kill. Later, when we were in our right minds I asked again. It was confirmed. Still I ask. I want to make sure. I'm sure I will ask Emily again and again until the day of my surgery. She's made it official, too, by telling her mother. I think it's official.
And now it's in writing — although it's also in legal writing.
Emily will be keeping Harrison during my time in the hospital. And my girlfriends (MAN, WHAT AMAZING GIRLFRIENDS THEY ARE) will be taking turns watching him, loving on him, taking him to school, picking him up, spoiling him, etc. while I am out of commission. Gosh, I really love them!!!!
Where's Harry's dad? I don't know. We haven't heard from him, talked to him, seen him since January 17, just after Harry's 6th birthday party. He lives a mile and a half away. And he's alive and still living there. So, I don't know. I just keep telling Harry that his dad loves him loads, but isn't in his right mind right now. Clearly.
Speaking of him — Harry's dad ... he isn't the same man I met and fell in love with back in the 90s. Nope, not at all. I miss that man. In hindsight he changed right before we split up. I think it was partly a side affect from his dear grandmother's death. Also combined with serious mental issues that I know he suffers from. I wish that man would come back. The man I fell in love with was the smartest man I had ever met. The funniest, too. And most definitely the kindest. I don't recognize him anymore. And I haven't for a very long time.
Oh what I wouldn't do to have Mark circa 1999-2005 with me today. With me whilst I deal with all of this shit. He'd protect me. He'd reassure me. That Mark would have my back and that Mark would be an amazing father. RIP Mark 1999-2005.
Oh, enough about that.
Here is what prompted me to write today (aside from thinking about that super sad movie that you should all watch and weep to) ... surgery day.
I am scared to death thinking about surgery day. I will have to be heavily drugged to even get to the hospital. Which brings me to who I want to have take me to the hospital. Mom will definitely be there. But as much as I adore her and as much as I will probably be begging for her after my head gets sliced open (and I hopefully come to), I am not sure I want her to take me to the hospital. It's highly possible that I will want Alicia there. Maybe Emily. Maybe my aunt Julie. What I do know is that the person will have to be completely calm and loving in order for me to get through it. Someone who I will let see me cry (that list is short). Someone who loves me unconditionally. Oh jeez.
That's all.
Monday, March 21, 2011
Thursday, March 17, 2011
Wanna see it?
Back in September I showed you this:
That little white thing shaped like a candy corn is the schwannoma, the AN, the neuroma, the acoustic neuroma, or as I lovingly refer to it, the little bitch!
In September it was 9mm x 4mm.
I got another MRI a few weeks ago and it grew. I don't know it's size now because I didn't see the radiologist's report. I need to go pick up one at the hospital. All my doctor said was, "It has grown, let's take it out."
Here is the little bitch during the last MRI:
Wait, no, that's me and and the things that I usually have on my brain. Sorry.
You can tell that it has grown, but you can't really tell that much. But let me assure you, when the doc put the films on top of each other September's tumor fits inside of March's tumor. That little bastard! My tumor, not the doctor.
Looking at scans of my head/brain makes me a little sick to my stomach. I start worrying about all the little white masses, and all the things that are different about each side. Shouldn't each side look the same? I start looking at the brain stem area and get nauseous. In 6 weeks and 6 days they will be inside my head poking around on it.
All the black stuff is fluid. And no, I am not missing part of my brain, it's just partially covered by more fluid in certain areas. I guess. The gray stuff is matter. The white stuff I guess is cancer. Just kidding. I hope.
Honestly, I probably shouldn't even be looking at these. I certainly shouldn't be scrutinizing them. I'm no doctor.
Look how fat my cheeks are!
That is all.
That little white thing shaped like a candy corn is the schwannoma, the AN, the neuroma, the acoustic neuroma, or as I lovingly refer to it, the little bitch!
In September it was 9mm x 4mm.
I got another MRI a few weeks ago and it grew. I don't know it's size now because I didn't see the radiologist's report. I need to go pick up one at the hospital. All my doctor said was, "It has grown, let's take it out."
Here is the little bitch during the last MRI:
Wait, no, that's me and and the things that I usually have on my brain. Sorry.
You can tell that it has grown, but you can't really tell that much. But let me assure you, when the doc put the films on top of each other September's tumor fits inside of March's tumor. That little bastard! My tumor, not the doctor.
Looking at scans of my head/brain makes me a little sick to my stomach. I start worrying about all the little white masses, and all the things that are different about each side. Shouldn't each side look the same? I start looking at the brain stem area and get nauseous. In 6 weeks and 6 days they will be inside my head poking around on it.
All the black stuff is fluid. And no, I am not missing part of my brain, it's just partially covered by more fluid in certain areas. I guess. The gray stuff is matter. The white stuff I guess is cancer. Just kidding. I hope.
Honestly, I probably shouldn't even be looking at these. I certainly shouldn't be scrutinizing them. I'm no doctor.
Look how fat my cheeks are!
That is all.
Tuesday, March 15, 2011
It Might Get Real
More than six months ago when I heard the words, "You have a brain tumor," I wasn't prepared. Who is ever prepared to hear something like that? Today I am more prepared. Ready to get this sucker out. Ready to move forward. Ready to live life without thinking, "Oh, I have a brain tumor." It's nerve-wracking to say the least.
But I am getting it out. My surgery date is officially Wednesday, May 4, 2011. That also may be the day I die. Wouldn't that be sad? But just like I prepare to be off work, prepare to have Harrison looked after, prepare to be sick for a bit and have a foggy head, I must also prepare for the worst. Dying.
I haven't always been scared of dying. I used to worry about my nana dying. I prepared my whole life for her dying. Which is kinda sad that I always dreaded it. Guess what!? She did die. I wasn't prepared. It's been 10 years and I am still sad and think about her every day! Now I worry about my mom dying. I worry about my kid dying. I worry about people I love dying. I am a worrier. And I have an abnormal fixation on death and dying. I should probably get some sort of therapy. But I've gone 38 years with little therapy and I've done pretty well (especially given some of the things I've experienced), so why start now.
Dying isn't the only thing I am worried about during the days leading up to brain surgery. Oh MY GOD!!! Brain surgery! That sounds so horrific!
I worry about:
1. Leaving my son alone without a mother and father (that's right - his father has basically said adios - whatever, it's totally his loss ... Harry will be just fine. Digress).
2. Becoming disabled and nutty. I mean, they are chopping on my brain ... this is a genuine concern.
3. Having a spinal fluid leak. It's a real serious complication of the type of brain surgery I am having.
4. Worrying my friends and family.
5. Not being able to close my left eye.
6. Being off work, unpaid and not having money to pay my bills, buy food and pay stupid medical bills. I mean, what if I end up needing one of those fancy Temperpedic beds?
7. And finally I worry about ...
Wait for it ....
I worry about my surgeons screwing up and jacking up my facial nerve and ultimately ...
Wait for it ....
Looking like Mary Jo Buttafucco!!!!
I guess that bitch Amy Fisher shot her right in the facial nerve. But the surgery I am getting can also create this look. I am scared of this. I worry about it. Nearly as much as I worry about dying.
I guess it'd be better than looking like Joey Buttafucco.
I guess I should go ahead and have my stylist give me the Mary Jo.
Bah.
Just yesterday a nice friend said, and I quote, (basically because this type of thing totally boosts my ego and I can come back and read it over and over and over and over [ad nauseam] when I have facial weakness and a frankenscar down my scalp): "I really like your brain and face. A lot."
Here are the positives (and believe it or not, I am really being quite positive — I just feel it necessary to add really obscene humor in order to stay positive [i.e. Mary Jo Buttafucco]):
1. The tumor will be gone after surgery.
2. It's small enough still (1 cm) to warrant a smaller hole in the sub-dermal fascia (hahahaha I totally made up that term, I think) under my skull. A larger tumor would mean the surgeons would have to make a bigger hole under my skull. Luckily, my hole will be small. Huh?
3. I might recover and be able to go back to work within 3 weeks (give or take).
4. I have THE MOST AMAZING and supportive friends anyone in the entire universe could ask for. Seriously!
5. And the coolest positive of all!!!!! Doc is giving me a simultaneous surgery ... he is going to implant the totally kick ass and awesome Baha Implant!!!!! That means I can hear. Sure, I will have a wicked looking snap thing sticking out of my mastoid bone behind my ear. But I really don't care. I will be able to hear again. Now if that's not positive, I don't know what is.
Last week, Dr. Holly (my (yes, MINE) audiologist) gave me a Baha demo. AND she let me take the simulator home with me. I still have it. It's on a headband and not implanted into my head (obviously) yet. The real thing will be much better, but this simulator is wicked. I will truly have a bionic ear. I am very lucky.
Lookie at how small it is in the video above. Ignore my nail. And ignore the fact that I say that it's the "implant." The implant will be in my head. The thing in the video is the "device."
Here is Dr. Holly. She is very sweet.
I have so much to say - but I have seven weeks to say everything before I die. So, I will post more later. And will post more often leading up to my surgery date.
Thank you all for standing by me, reading and listening to me whinge and babble. I appreciate you.
Tonight my dear friend Sunny has organized a small gathering of my core friends to discuss my surgery, phone trees (that's such an old church lady term), schedules, care, etc.
I'm telling you ... my friends KICK LOADS AND LOADS OF ASS! So, thank you. Just know that when you are in need I will be right there by your side. And that's no joke!
Stay tuned! It might get loud!
But I am getting it out. My surgery date is officially Wednesday, May 4, 2011. That also may be the day I die. Wouldn't that be sad? But just like I prepare to be off work, prepare to have Harrison looked after, prepare to be sick for a bit and have a foggy head, I must also prepare for the worst. Dying.
I haven't always been scared of dying. I used to worry about my nana dying. I prepared my whole life for her dying. Which is kinda sad that I always dreaded it. Guess what!? She did die. I wasn't prepared. It's been 10 years and I am still sad and think about her every day! Now I worry about my mom dying. I worry about my kid dying. I worry about people I love dying. I am a worrier. And I have an abnormal fixation on death and dying. I should probably get some sort of therapy. But I've gone 38 years with little therapy and I've done pretty well (especially given some of the things I've experienced), so why start now.
Dying isn't the only thing I am worried about during the days leading up to brain surgery. Oh MY GOD!!! Brain surgery! That sounds so horrific!
I worry about:
1. Leaving my son alone without a mother and father (that's right - his father has basically said adios - whatever, it's totally his loss ... Harry will be just fine. Digress).
2. Becoming disabled and nutty. I mean, they are chopping on my brain ... this is a genuine concern.
3. Having a spinal fluid leak. It's a real serious complication of the type of brain surgery I am having.
4. Worrying my friends and family.
5. Not being able to close my left eye.
6. Being off work, unpaid and not having money to pay my bills, buy food and pay stupid medical bills. I mean, what if I end up needing one of those fancy Temperpedic beds?
7. And finally I worry about ...
Wait for it ....
I worry about my surgeons screwing up and jacking up my facial nerve and ultimately ...
Wait for it ....
Looking like Mary Jo Buttafucco!!!!
I guess that bitch Amy Fisher shot her right in the facial nerve. But the surgery I am getting can also create this look. I am scared of this. I worry about it. Nearly as much as I worry about dying.
I guess it'd be better than looking like Joey Buttafucco.
I guess I should go ahead and have my stylist give me the Mary Jo.
Bah.
Just yesterday a nice friend said, and I quote, (basically because this type of thing totally boosts my ego and I can come back and read it over and over and over and over [ad nauseam] when I have facial weakness and a frankenscar down my scalp): "I really like your brain and face. A lot."
Here are the positives (and believe it or not, I am really being quite positive — I just feel it necessary to add really obscene humor in order to stay positive [i.e. Mary Jo Buttafucco]):
1. The tumor will be gone after surgery.
2. It's small enough still (1 cm) to warrant a smaller hole in the sub-dermal fascia (hahahaha I totally made up that term, I think) under my skull. A larger tumor would mean the surgeons would have to make a bigger hole under my skull. Luckily, my hole will be small. Huh?
3. I might recover and be able to go back to work within 3 weeks (give or take).
4. I have THE MOST AMAZING and supportive friends anyone in the entire universe could ask for. Seriously!
5. And the coolest positive of all!!!!! Doc is giving me a simultaneous surgery ... he is going to implant the totally kick ass and awesome Baha Implant!!!!! That means I can hear. Sure, I will have a wicked looking snap thing sticking out of my mastoid bone behind my ear. But I really don't care. I will be able to hear again. Now if that's not positive, I don't know what is.
Last week, Dr. Holly (my (yes, MINE) audiologist) gave me a Baha demo. AND she let me take the simulator home with me. I still have it. It's on a headband and not implanted into my head (obviously) yet. The real thing will be much better, but this simulator is wicked. I will truly have a bionic ear. I am very lucky.
Lookie at how small it is in the video above. Ignore my nail. And ignore the fact that I say that it's the "implant." The implant will be in my head. The thing in the video is the "device."
Here is Dr. Holly. She is very sweet.
I have so much to say - but I have seven weeks to say everything before I die. So, I will post more later. And will post more often leading up to my surgery date.
Thank you all for standing by me, reading and listening to me whinge and babble. I appreciate you.
Tonight my dear friend Sunny has organized a small gathering of my core friends to discuss my surgery, phone trees (that's such an old church lady term), schedules, care, etc.
I'm telling you ... my friends KICK LOADS AND LOADS OF ASS! So, thank you. Just know that when you are in need I will be right there by your side. And that's no joke!
Stay tuned! It might get loud!
Friday, February 18, 2011
Spring or something like it ...
Spring is in the air. I love it. I always have. It's different than my other favorite season — fall. Spring is like a renewal of spirit. Fall is more of a hunker down and hibernate vibe.
Nevertheless, I smell and feel spring upon us. And it's good.
My doctor's nurse called me this week. I have my second follow up MRI next Thursday. The first one I had, which diagnosed the tumor, was in September. I go to my doctor on March 9 to compare the two MRIs side-by-side to see how the tumor has grown.
Sometimes I have dreams that it has rapidly grown to a massive size. And sometimes during my awake hours I psych myself out and imagine it growing.
Lately my symptoms are the same. Headaches (these could be stress related), balance issues, no hearing, tinnitus. However, there are a few new symptoms. This is gross, but I have been drooling at night. I've never been a night drooler. But I wake up and find that it's happening. I worry that the tumor is starting to affect my facial nerve. Also, the left side of my head gets numb during the day and whilst I sleep — that's a new symptom. The scariest new symptom of all is my speech. It isn't necessarily slurred, but oftentimes I struggle to say the right words. Much like Serene Branson as seen here:
It's not at all funny. But sorta funny. And I mess up like Ricky in Trailer Park Boys. More often, this is what it's like. For instance, I said, "Bump up my game" yesterday instead of "Step up my game."
But whatever.
I am pretty sure that my doctor is going to want to schedule surgery after my appointment on the 9th of March.
Here is a list. Because I love lists.
1. Harry is taken care of, I believe. My dear friend Emily has agreed to play mommy whilst I am in the hospital. I trust her completely. And Harry loves her. And Emily says that he can sleep in bed with her and that makes me feel more comfortable. I won't have to worry about him because I know that Emily will baby my baby.
2. I'm trying to wrap up production of my April magazine by the time my surgery rolls around. This shouldn't be a problem. And I will try to get a head start on the next one.
3. My amazing housekeeper has offered to come take care of the house whilst I am in recovery. So, I don't have to worry about cleaning house or tidying up.
4. I have awesome friends who want to organize a meal program during my recovery, so I don't have to cook. This will be excellent.
5. My friends rule.
6. I have written a manual to my life which states passwords, details, life insurance, final wishes, etc. And I've even written my obituary. I am so morbid, I know. But c'mon.
So, I think my affairs will be in order. However, I am not sure what I am going to do about paying medical bills, rent and other bills whilst I am off work without pay. Perhaps I will give myself a benefit. Or start a paypal account and ask for donations to help cover expenses in my time of need. For each donation level I will offer something awesome. For instance:
Donate $50 or below and you will receive a photo of my gnarly tumor during surgery.
$51-$200 the donor will receive a photo of the gnarly tumor, a postcard mailed to them from my hospital room with slobber on it.
$201-$500 the donor will receive the photo, the postcard and a video of doctors removing my stitches.
I haven't worked out the details, but you get the drift.
Hahahaa
So .... Neal's gf, Jamie, had her surgery 2.5 weeks ago. The tumor was 5cm and the surgery was about 14 hours long. She was in the hospital for 1.5 weeks and is doing well at home. She has a few minor pains, but so far, so good.
I hope to be back to work within two weeks. Seriously, that's my goal. I have to work.
On to random stuff:
I'm stressed beyond belief - not because I have a brain tumor, but because my son's father sucks ass. I won't write too much about it because I'm too dignified to make myself into a victim (thanks Zach), but right now it sucks. Whilst driving home last night this is what Harrison said to me, since he hasn't seen or heard from his father in a month:
"Mom, I want a new dad. My dad doesn't care about me anymore. And he doesn't love me."
Do you know how much that breaks a mother's heart?
So, I guess I am going to have to go to the Dad Store. After I go to the Big Brother Store, because he also wants one of those.
I digress.
Work is good. Friends are good. Being a mommy is good. Family is good. Spring is good. Life is good.
Ancora Imparo.
Nevertheless, I smell and feel spring upon us. And it's good.
My doctor's nurse called me this week. I have my second follow up MRI next Thursday. The first one I had, which diagnosed the tumor, was in September. I go to my doctor on March 9 to compare the two MRIs side-by-side to see how the tumor has grown.
Sometimes I have dreams that it has rapidly grown to a massive size. And sometimes during my awake hours I psych myself out and imagine it growing.
Lately my symptoms are the same. Headaches (these could be stress related), balance issues, no hearing, tinnitus. However, there are a few new symptoms. This is gross, but I have been drooling at night. I've never been a night drooler. But I wake up and find that it's happening. I worry that the tumor is starting to affect my facial nerve. Also, the left side of my head gets numb during the day and whilst I sleep — that's a new symptom. The scariest new symptom of all is my speech. It isn't necessarily slurred, but oftentimes I struggle to say the right words. Much like Serene Branson as seen here:
It's not at all funny. But sorta funny. And I mess up like Ricky in Trailer Park Boys. More often, this is what it's like. For instance, I said, "Bump up my game" yesterday instead of "Step up my game."
But whatever.
I am pretty sure that my doctor is going to want to schedule surgery after my appointment on the 9th of March.
Here is a list. Because I love lists.
1. Harry is taken care of, I believe. My dear friend Emily has agreed to play mommy whilst I am in the hospital. I trust her completely. And Harry loves her. And Emily says that he can sleep in bed with her and that makes me feel more comfortable. I won't have to worry about him because I know that Emily will baby my baby.
2. I'm trying to wrap up production of my April magazine by the time my surgery rolls around. This shouldn't be a problem. And I will try to get a head start on the next one.
3. My amazing housekeeper has offered to come take care of the house whilst I am in recovery. So, I don't have to worry about cleaning house or tidying up.
4. I have awesome friends who want to organize a meal program during my recovery, so I don't have to cook. This will be excellent.
5. My friends rule.
6. I have written a manual to my life which states passwords, details, life insurance, final wishes, etc. And I've even written my obituary. I am so morbid, I know. But c'mon.
So, I think my affairs will be in order. However, I am not sure what I am going to do about paying medical bills, rent and other bills whilst I am off work without pay. Perhaps I will give myself a benefit. Or start a paypal account and ask for donations to help cover expenses in my time of need. For each donation level I will offer something awesome. For instance:
Donate $50 or below and you will receive a photo of my gnarly tumor during surgery.
$51-$200 the donor will receive a photo of the gnarly tumor, a postcard mailed to them from my hospital room with slobber on it.
$201-$500 the donor will receive the photo, the postcard and a video of doctors removing my stitches.
I haven't worked out the details, but you get the drift.
Hahahaa
So .... Neal's gf, Jamie, had her surgery 2.5 weeks ago. The tumor was 5cm and the surgery was about 14 hours long. She was in the hospital for 1.5 weeks and is doing well at home. She has a few minor pains, but so far, so good.
I hope to be back to work within two weeks. Seriously, that's my goal. I have to work.
On to random stuff:
I'm stressed beyond belief - not because I have a brain tumor, but because my son's father sucks ass. I won't write too much about it because I'm too dignified to make myself into a victim (thanks Zach), but right now it sucks. Whilst driving home last night this is what Harrison said to me, since he hasn't seen or heard from his father in a month:
"Mom, I want a new dad. My dad doesn't care about me anymore. And he doesn't love me."
Do you know how much that breaks a mother's heart?
So, I guess I am going to have to go to the Dad Store. After I go to the Big Brother Store, because he also wants one of those.
I digress.
Work is good. Friends are good. Being a mommy is good. Family is good. Spring is good. Life is good.
Ancora Imparo.
Thursday, January 27, 2011
Tumorlicious
Really there is no reason to title this blog "Tumorlicious," since a tumor is probably not too 'licious. Nevertheless, Hi!
I haven't posted in a while. And people (friends, mainly) have been asking me why. Well, it's because I have spent the last two months trying to avoid the subject. Even though I think about it every single day, I have still been avoiding talking about it.
Let's see ... lots of stuff has been going on. I'd like to break it all down in list format. You know how we do.
1. I got a bunch of tests in November, after my doc put me on a watch and wait status.
2. Saw the doc again on December 1. He said, "Wow, you really are dizzy." One of the tests showed that I have only 40% balance function. He ordered me to do some physical therapy to help balance and then said that in March he will do another MRI, and if it (the 'licious tumor) has grown that he is gonna get on the ball and schedule surgery.
I haven't posted in a while. And people (friends, mainly) have been asking me why. Well, it's because I have spent the last two months trying to avoid the subject. Even though I think about it every single day, I have still been avoiding talking about it.
Let's see ... lots of stuff has been going on. I'd like to break it all down in list format. You know how we do.
1. I got a bunch of tests in November, after my doc put me on a watch and wait status.
2. Saw the doc again on December 1. He said, "Wow, you really are dizzy." One of the tests showed that I have only 40% balance function. He ordered me to do some physical therapy to help balance and then said that in March he will do another MRI, and if it (the 'licious tumor) has grown that he is gonna get on the ball and schedule surgery.
3. The surgery will be of the translabyrinthine approach. This procedure provides the best line of sight of the facial nerve and consequently offers the highest success rate of facial nerve preservation for a patient. The downside is that this procedure sacrifices an individual's hearing. It should only be selected when a person has severe hearing loss or the tumor is too large for hearing preservation surgery. Translab is the preferred surgical choice by most doctors when the hearing level is no longer useable. It is also a good choice when a tumor is above 20 mm as, statistically, facial nerve damage increases with large tumors. The entry is behind the ear in which the mastoid bone and some bone in the inner ear is removed.
3b. So, yeah, my inner ear will be removed, rendering me 100% deaf in my left ear. However, my doctor assures me that he can get me approved for the Baha implant which will make me hear again. What? Yep, it's super cool and I will totally be like a bionic woman of sorts.
Except I won't look like this:
Instead, I will look like this:
Not really. Man, that would be a real drag if I looked like that after surgery.
3b. Not only will the inner ear be removed, but the mastoid bone will be removed. And then guess what!?! Doctors will remove a chunk of my belly fat to fill the space where the bone once was and they will put a titanium plate over it and staple up my head. Easy peasy, right? And I plan on taping a note (written in the most beautiful calligraphy) to my belly. And on that note it will say:
Dear Doctors White and Fell: Thank you for taking the time to read this carefully thought-out and planned note. I trust you are doing a good job and not making fun of my belly fat. As you can see, I have plenty of it. Thus, since insurance is covering this procedure, please continue to remove some fat, not just enough to cover the bone replacement in my skull. Surely there are starving kids in Africa or some meat-eating marine life in the Pacific that would like to have a few (hundred) pounds of this belly fat. C'mon, do me this favor, please kind doctors. Also, while you are in there, can you tie my tubes? Again, thanks for treating my body and brain with such care. I owe you one. Love and kisses, Joey
4. Am I still scared? Sure. Am I still avoiding? A little. But the truth is, I have had nearly five months to come to terms with what's going on. I think I'll survive. I hope. If I think about it too much I get really scared. Mainly because I am concerned about finances and who will look after Harry. But I have to rely on knowing that I have good friends. We'll see how good they really are ... when surgery day and recovery time is upon us.
5. Acoustic Neuromas in the media: Well, Dr. House on the prime time show, HOUSE, mentioned acoustic neuromas the other night. I'm telling you, I'm totally making brain tumors cool. I single-handedly made gauchos cool again in 2000 when I came back from Europe. I can totally do the same with brain tumors. You watch! By the time mine is gone, everyone will want one. Veruca Salt will beg her dad for one. Just watch.
5b. Tara Subkoff, fashion designer, had an acoustic neuroma removed. She even had the same type of surgery I am going to have. Harper's Bazaar wrote about it. Because she's famous, and didn't have insurance, all the Hollywood and NYC peeps had a benefit for her. I hope I get a benefit, too. One with lots of beer and pie. I mean, one with lots of sweet and kind supporters.
Anyway, Tara Subkoff had a bit of facial paralysis after her surgery. But it's not too bad.
Here's another picture of her. She's pretty.
6. Gosh, I am forgetting what all I have to talk about. Let's see ... I am on five medications. That's right, five!
7. Oh, GOD, here is the craziest shit ever ... I have an ex-boyfriend who lives in Savannah, Ga., and we are still friends. He's a great friend. But he is totally a tumor spreader. His current girlfriend found out about a month ago that she also has an acoustic neuroma brain tumor. No shit!!!! I shit you not. Seriously, I am not shitting you. Shit! Supposedly only 1 out of 100,000 people in the U.S. have ANs, and he knows TWO! What are the shittin' odds? Shit, I swear my Tourette's normally isn't this bad. Anyway, hers is bigger, much bigger and she is getting surgery next week. I am sure all will go well and she will get through this - especially with the great support Mr. Savannah will give to her. He'll be a great caregiver. She's a lucky tumorlicious-having woman. I digress.
8. Let's see, what has been going on this first month of the new year? Well, I've been sick. Harry's been sick. I've been sick. Harry's been sick. Hung out with the love of my life during the first few days of the month. I've had lots of dinners with Emily. Harry's been sick. I've been sick. Emily has been sick. I've started tai chi. Harry's been sick. I've seen Zach a little. Mom started some sort of radiation-type treatment. She's been sick. I've been sick. I've worked lots. It snowed. I've been sick. JP got new boobies. Harry's been sick. I watched a silly artsy movie called Little Furniture with Emily. Harry turned six. Storm Troopers came to his birthday party. He was sick. Harry threw up in the grocery store. And in my bed. I've been sick. My lips swelled up again due to some allergy. I went to the doctor. That's about it. Let's hope February (the month of love) turns out better.
Love and kisses and tumorliciousnessexpialadocious,
Joey
Monday, December 6, 2010
Big fat whiny late night post ...
It's nearly 11:30 on a Monday night. Around 10:30 tonight I started feeling weird. My upper lip felt funny. So I went to the mirror and HOLY crap, something is clearly wrong. My upper lip is numb and gigantic. In the past hour it's tripled in size. It doesn't hurt, but it has me panicked. And I'm all upset. Mainly I'm feeling sorry for myself.
I have no idea why this is happening. It's like an allergic reaction or a bee sting. But I've done nothing different, haven't eaten anything out of the norm and I haven't been stung by a bee. But as I type this it's getting bigger. My lips are huge at the best of times, but it's so swollen right now that there is absolutely no definition. I am too embarrassed to call my doctor. So I call those closest to me.
BFF offered to go get Benadryl, but was already in bed so I told him to forget it and go to sleep.
Long distance boyfriend said, "Put ice on it and go to bed."
Mom says, "Go to drugstore and get Benedryl or go to hospital if you're so worried." Gee thanks mom.
So, I barely make it off the phone with mom before I start sobbing. Big fat baby infant tears. I'm too proud to call anyone else for help. I don't want to wake up my sleeping child to go to pharmacy. And I'm scared and alone. And it fucking sucks. Bad.
I hate crying. I should take a Xanax.
My head is pounding, my eyes won't stop crying and my lips are the size of two German sausages.
I know that I'm a grown up and can take care of myself, but still I feel alone. It's times like this when I miss my nana the most. She would have woken from a deep slumber to come take care of me. And she would have patted my back until I fell asleep. Man, I really miss her.
I've really enjoyed being single lately, but I'm ready to find a new husband. A partner. Someone who will baby me and tell me it's ok when my lips suddenly and randomly blow up to the size of Detroit. I just want to be looked after.
I'm whiny. My lips aren't going down. They feel funny and they are numb.
I guess I'll just go to bed. I found some Children's Benedryl from 2008 in the medicine cabinet. I took half a bottle with a 2mg Xanax. Hopefully my lips will be normal in the morning. If not, I guess I'll go to doctor.
This has put me in a really bad mood.
Good night.
Love,
Lisa Rinna
UPDATE: I drove myself to hospital. They are admitting me for a sec. More details later.
I have no idea why this is happening. It's like an allergic reaction or a bee sting. But I've done nothing different, haven't eaten anything out of the norm and I haven't been stung by a bee. But as I type this it's getting bigger. My lips are huge at the best of times, but it's so swollen right now that there is absolutely no definition. I am too embarrassed to call my doctor. So I call those closest to me.
BFF offered to go get Benadryl, but was already in bed so I told him to forget it and go to sleep.
Long distance boyfriend said, "Put ice on it and go to bed."
Mom says, "Go to drugstore and get Benedryl or go to hospital if you're so worried." Gee thanks mom.
So, I barely make it off the phone with mom before I start sobbing. Big fat baby infant tears. I'm too proud to call anyone else for help. I don't want to wake up my sleeping child to go to pharmacy. And I'm scared and alone. And it fucking sucks. Bad.
I hate crying. I should take a Xanax.
My head is pounding, my eyes won't stop crying and my lips are the size of two German sausages.
I know that I'm a grown up and can take care of myself, but still I feel alone. It's times like this when I miss my nana the most. She would have woken from a deep slumber to come take care of me. And she would have patted my back until I fell asleep. Man, I really miss her.
I've really enjoyed being single lately, but I'm ready to find a new husband. A partner. Someone who will baby me and tell me it's ok when my lips suddenly and randomly blow up to the size of Detroit. I just want to be looked after.
I'm whiny. My lips aren't going down. They feel funny and they are numb.
I guess I'll just go to bed. I found some Children's Benedryl from 2008 in the medicine cabinet. I took half a bottle with a 2mg Xanax. Hopefully my lips will be normal in the morning. If not, I guess I'll go to doctor.
This has put me in a really bad mood.
Good night.
Love,
Lisa Rinna
UPDATE: I drove myself to hospital. They are admitting me for a sec. More details later.
Wednesday, December 1, 2010
Thin Dizzy
OK, I am not thin, but I am dizzy. And I love the band Thin Lizzy. I mean, how could you not love this band?
Today, after calling my ENT (the guy who currently has my life in his hands) several times to get some sort of answers, his nurse called me back. I last saw him on November 1 when he told me that he was putting me in a "watch and wait status" and ordered three zillion tests. I have been calling obsessively for more than two weeks and just today got a response. Their excuse? Well, St. Francis health system has recently converted to a new computerized system and he is just now reading the results.
What are the results you ask?
Well, my ECOG (electrochochleography) test came back normal. That means I don't have Meniere's Disease. I didn't think I did.
The ABR (auditory brainstem response) test came back abnormal. Duh. Really? You mean, I can't hear? This is NOT news to me. I could have saved my insurance company an ass load of money had they just taken my word for it. I am pretty much deaf in the left ear. I didn't need a stupid test to prove it. Nevertheless, it did.
The ENG (Electronystagmogram) test came back abnormal. This was the test that had me wearing a pair of sensitive camera goggles for two hours while they did a battery of tests. What did it prove? That I'm dizzy and tinnitus is present. Again, duh!
I had several more tests, and I guess the nurse didn't figure it was important enough to tell me those results. Nevertheless, she said that the doc wants to see me on Monday to go over treatment options. What does this mean? Does this mean that now he sees that the tumor is affecting me he wants to slice my head open and remove it? WTF?! I am in panic mode again. I mean, I've been in the watch and wait mode for a month now and have sorta forgotten about the surgical option.
Who really knows what it means. It probably means that I am going to pay a co-payment and my insurance will pay shit tons of money for the ENT to once again inform me that I have a brain tumor and that I am indeed dizzy and have lost my hearing. I swear to Allah if he says that to me again I will stroke out and go mental on him.
I am so ready to stop thinking about all of this.
But more importantly, I am at a point where I don't even care about the tumor anymore, I am still mourning my hearing loss.
I spent some time with friends this past week. Friends who know about the tumor - friends who know about my hearing loss. But I still had to constantly remind them. It's no different at work or amongst friends and family I see on a daily basis.
Guess what guys!!!! I can't fucking hear! So, please be cognizant and remember it and take the measures to ensure that I can hear you from my good ear (the right one). I think the only person who really remembers and takes the steps to assist me is Emily Elkins. She always remembers to sit on my right side.
Just so you know, friends, I am going to start ignoring you if I can't hear you. It's easier than saying, "huh? what? pardon me? excuse me? what did you say?"
On a positive note ... I talked to my insurance company at length yesterday and they said that if my doctor sends them letters and documentation on my hearing loss that I may get approved for the $30,000 Baha Ear Implant. That's a wicked, surgically implanted thing that looks like a snap that is put into the bone behind my ear and somehow tricks my bad ear into hearing. It's super sci-fi shit! And I want it.
It isn't pretty, so I will have to grow out my hair. And it's not terribly sexy. I mean, the first man who runs his fingers through my hair only to get them stuck on this big gnarly box snapped to my skull is going to run like the wind. Well, hopefully not. But I probably would. Or I would beg to unsnap it and explore the crazy device. Whatever. I just want to hear again from my left ear. After all, I have to work for the next 35+ years, I want to be able to hear what people are saying to me. And, I work in the music industry. I HAVE to be able to hear.
I'm whining, I know. I'll stop. Because, believe it or not, I am in really fantastic spirits and have been. Even during the bad days I realize that things aren't as bad as they could be. I am always very thankful for what I have. I hope I always stay that way.
Ancora Imparo.
Today, after calling my ENT (the guy who currently has my life in his hands) several times to get some sort of answers, his nurse called me back. I last saw him on November 1 when he told me that he was putting me in a "watch and wait status" and ordered three zillion tests. I have been calling obsessively for more than two weeks and just today got a response. Their excuse? Well, St. Francis health system has recently converted to a new computerized system and he is just now reading the results.
What are the results you ask?
Well, my ECOG (electrochochleography) test came back normal. That means I don't have Meniere's Disease. I didn't think I did.
The ABR (auditory brainstem response) test came back abnormal. Duh. Really? You mean, I can't hear? This is NOT news to me. I could have saved my insurance company an ass load of money had they just taken my word for it. I am pretty much deaf in the left ear. I didn't need a stupid test to prove it. Nevertheless, it did.
The ENG (Electronystagmogram) test came back abnormal. This was the test that had me wearing a pair of sensitive camera goggles for two hours while they did a battery of tests. What did it prove? That I'm dizzy and tinnitus is present. Again, duh!
I had several more tests, and I guess the nurse didn't figure it was important enough to tell me those results. Nevertheless, she said that the doc wants to see me on Monday to go over treatment options. What does this mean? Does this mean that now he sees that the tumor is affecting me he wants to slice my head open and remove it? WTF?! I am in panic mode again. I mean, I've been in the watch and wait mode for a month now and have sorta forgotten about the surgical option.
Who really knows what it means. It probably means that I am going to pay a co-payment and my insurance will pay shit tons of money for the ENT to once again inform me that I have a brain tumor and that I am indeed dizzy and have lost my hearing. I swear to Allah if he says that to me again I will stroke out and go mental on him.
I am so ready to stop thinking about all of this.
But more importantly, I am at a point where I don't even care about the tumor anymore, I am still mourning my hearing loss.
I spent some time with friends this past week. Friends who know about the tumor - friends who know about my hearing loss. But I still had to constantly remind them. It's no different at work or amongst friends and family I see on a daily basis.
Guess what guys!!!! I can't fucking hear! So, please be cognizant and remember it and take the measures to ensure that I can hear you from my good ear (the right one). I think the only person who really remembers and takes the steps to assist me is Emily Elkins. She always remembers to sit on my right side.
Just so you know, friends, I am going to start ignoring you if I can't hear you. It's easier than saying, "huh? what? pardon me? excuse me? what did you say?"
On a positive note ... I talked to my insurance company at length yesterday and they said that if my doctor sends them letters and documentation on my hearing loss that I may get approved for the $30,000 Baha Ear Implant. That's a wicked, surgically implanted thing that looks like a snap that is put into the bone behind my ear and somehow tricks my bad ear into hearing. It's super sci-fi shit! And I want it.
It isn't pretty, so I will have to grow out my hair. And it's not terribly sexy. I mean, the first man who runs his fingers through my hair only to get them stuck on this big gnarly box snapped to my skull is going to run like the wind. Well, hopefully not. But I probably would. Or I would beg to unsnap it and explore the crazy device. Whatever. I just want to hear again from my left ear. After all, I have to work for the next 35+ years, I want to be able to hear what people are saying to me. And, I work in the music industry. I HAVE to be able to hear.
I'm whining, I know. I'll stop. Because, believe it or not, I am in really fantastic spirits and have been. Even during the bad days I realize that things aren't as bad as they could be. I am always very thankful for what I have. I hope I always stay that way.
Ancora Imparo.
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