All posts by Daisy

Less than 2 weeks to go…eek.

Time is flying by and I’m not sure I like it.  Yes, I want to get this over with, but let’s be honest…I don’t want to do it at all.

Monday I had an appointment with a vestibular therapist.  She introduced me to a list of exercises I will need to start doing as soon as I’m awake/alert enough to do so in the hospital and a number that I will continue and/or start once I am home from the hospital.  Eye exercises, inner ear exercises, balance exercises, and a combination of these.  Unfortunately, she said it won’t do any good to start on them now.  It is only after my balance nerve is cut during surgery that these exercises will become crucial to my recovery and the re-training of my brain.

Next week I go in for my pre-op testing.  Not sure what all that will entail yet but they mentioned an EKG and meeting with an anesthesiologist.  Pre-op appointment is at the actual hospital where I will have my surgery.  Glad Mom will be back up here in time to go with me to that.  Hopefully I won’t be a complete mess.

I have to attend a meeting in Frisco on Wednesday, so that will be my last day at work before I start my medical leave.  For once, I am thankful for the lack of projects right now.  Not as many loose ends to tie up or hand off before I’m out.  Best guess right now is I will be out roughly 6 weeks for recovery…back to work in early January.

Not exactly the way I would’ve chosen to celebrate the holidays and my 40th birthday, but if the surgery goes well, the tumor is gone, and my recovery goes smoothly, that will be an excellent birthday present indeed.

Surgery Date Set

Just over a month later, we finally have a surgery date:  November 25, 2014.  The Tuesday before Thanksgiving.

Kind of relieved, but freaked out even more now because that means this is really happening.  The only time I’ve ever been in the hospital or had any type of surgery is when I was 18 and got my tonsils out.  So to jump from that to brain surgery….I do it big!

I’m ok if I just don’t think about it.  If I start thinking about going to the hospital, getting wheeled into the OR, what they are actually going to be doing, etc, then the waterworks start.  “Scared” doesn’t even scratch the surface of what I feel.  I’m not looking forward to this at all.

I keep trying to remind myself what another AN patient said:  On surgery day, I have the easy part.  All I have to do is show up and go to sleep.

This guy gets me.


After 26+ years, I never expected this to be EASY.  But I also never expected it to be so depressing!!  I guess it IS one of the longest relationships I’ve ever had, so I can’t help but be a little (or a lot) sad and/or angry about it at times.  It’s a bad breakup, that’s for sure.  No matter how many times I tell myself, “we can still be friends,” I know that the only real solution is to cut all ties with the Marlboro Man  (or any other nicotine-delivery system he comes to me dressed up as).

I’ve been reading The Journey Home:  Freedom from Nicotine, a free eBook by John Polito available on  I have to say, it made me feel better to have SOMEONE acknowledge the very real grief I am feeling over the loss of my smokes (and not look at me like I’m a complete nutjob).

Polito explains that, “albeit chemical, dependency on nicotine may have been the most intense and dependable relationship in our entire life.  Unless wet and it wouldn’t light, never once did puffing on a cigarette let me down.”  I was guaranteed that “aaaah” relief sensation within seconds that cigarettes deliver every single time.

I smoke(d) a pack and a half to two packs a day.  So let’s say that’s 30 cigarettes.  And according to Polito’s example, if I average 8 drags per cigarette, that’s 240 a day.  Who did I ever kiss 240 times a day?  Depend on 240 times a day?  Turn to for help 240 times a day? I’ve never even said my name (or anyone else’s) 240 times in one day.  We are closer to our addiction than our own name.

So of course it stands to reason that suddenly losing that would stir up feelings of loss and emotional turmoil, in addition to the physical withdrawal symptoms.  A relationship that was once a top-priority in my life is ending….and that realization can be overwhelming.

It is helpful for me to read/acknowledge these things because, as insane as I know this sounds (especially to a never-smoker), I still WANT to smoke.  I miss it.  I long for it.  In the theme of breaking up, you might call me a stalker.  I will follow a stranger with a lit cigarette just to smell it.  I will leave my house and come back just to experience that stale smoke smell (that I hated coming home to a few weeks ago).  I bump the AC on at home and stand under an air vent just for a whiff of old cigarette smoke.

With 11 miserable  days and counting, I understand more and more that, despite my protests otherwise, it IS an addiction, I AM a nicotine junkie, and I CANNOT have “just one.”

Still trying to schedule…

I heard from Dr Mickey’s nurse (Mike) earlier this week (Dr Kutz’s scheduler has still never contacted me the first time).  He apologized for not getting back to me sooner (he just got the message from Kutz’s person on Friday….he called me Monday.  Perfectly acceptable….unlike the woman who never once acknowledged me or returned my calls…grrr…still irritated about that).

Anyway, he indicated that Kutz’s scheduler was apparently out of the office this week (lovely) but that so far, it looked like January would be the first available dates for surgery.


All this time the discussion has been within “4 to 6 weeks” and “definitely before Thanksgiving”.  Now we just jumped to next year?!  I think Mike could tell I was getting upset/emotional and told me to hang in there, that when Kutz’s scheduler is back, they will try to find something better and reminded me “these tumors don’t grow very fast.”  Generally, no, but if you’re the one with it in your head, and you’ve decided to get surgery, having to wait another 3 months (so almost 6 total since diagnosis) feels like an eternity!

I ended up sending a message back to Dr Kutz’s nurse through their online chart thing asking for him to call me because he had been very confident that the surgery could be done sooner rather than later, and especially this type of surgery because one of the goals is to try and preserve the remaining hearing….waiting just increases the odds that that hearing might go before then.

Dr Kutz called me the next day and said he agreed…did NOT like January as an option so he and Dr Mickey had talked and they could do October 28.


Ok, now time for a freak out in the other direction.  lol  That’s barely a week and a half away.  I have stuff to take care of at work, clients to hand off, disability paperwork, etc, stuff to get cleared out at home, my parents have to have some notice (since they are essentially moving to Dallas to help me through the surgery and recovery).  Told him I would talk to my family /work and let him know by the next day but that I would REALLY rather something in November.

After soaking on it overnight, I just didn’t feel like I could get myself in the right frame of mind for sugery that quickly.  AND they had been very clear that I needed to stop smoking at least 4 weeks prior (this date would just barely be 3 weeks).  So I called back and asked them to look for another date.

We’ll see what happens….hopefully this doesn’t mean January.

Is it really that hard to DO YOUR JOB?!

So, on September 29, I let Dr Kutz know I was ready to move forward with surgery.  He said his scheduler would contact me to discuss dates (knowing that, at the time, I was waiting to find out that exact date to back into my quit smoking date….4 weeks prior to surgery).

I waited a few days but didn’t hear from anyone, so called his office and asked.  I was told to give them 7 to 10 days.  If I hadn’t heard from them by middle of the following week, to call back.

So….I waited again.  By October 8, I still hadn’t heard a peep from anyone, so I called Dr Kutz’s office again.  Explained that I was waiting to hear from the scheduler and that it had been a week and a half.  They transferred me to the scheduler (Robbie?) and I got her voicemail (of course).  I left a message explaining who I was and that I had not heard from anyone in 1.5 weeks regarding scheduling surgery and asked (very politely) for her to please call me and let me know the status of this.

Next day….still nothing, so I called again.  And again was transferred to her extension.  And again got her voicemail.  Left another message that I still had not heard from anyone even after leaving a message the day before.  Again asked for a callback.

Friday comes….still nothing.  So I use the online “my chart” thing that UTSW sends out to patients and send a message to Dr Kutz’s office that way.  His nurse responds and after several messages back and forth, I am assured that the scheduler has “just contacted” Dr Mickey’s office to find out available dates.  JUST CONTACTED?! What the hell has she been doing for the past 2 weeks?!  Or even what has she been doing for the past 3 days while ignoring my voicemails?  Seriously.  What.  The.  Eff.

This woman apparently has no clue how stressful and scary it is to make up your mind to have this surgery, then to have to sit around and wait for someone to contact you, give you ANY details, a timeframe, etc.  Add to the mix the fact that I went ahead and started my no-smoking journey on Oct 7 (because I was told to expect surgery in 4 to 6 weeks….only to find out that the first 2 of those weeks, absolutely NOTHING had been done towards scheduling it).

To say that I completely “dropped my basket” would be a huge understatement.  If one had been nearby, I’d have smoked an entire pack of cigarettes to try and calm down.  Since there wasn’t, I screamed and cried, called my mother, and basically had a nervous breakdown for well over an hour.

I don’t understand why it seems like EVERY FREAKING THING with these doctor’s offices takes an act of flipping congress to get done.  First it was all the referral nightmare crap trying to get a doctor’s office to send something to another office (and heaven forbid THEY contact each other to see why they aren’t receiving….no, apparently I need to referee that bullshit and play phone tag between them all for days until they finally get it right…or halfway right).  No something as serious as scheduling surgery for someone who has a job title of “scheduler” sits in a pile for 2 weeks, 3 phone calls, and a half-dozen emails before it gets done.

Seriously.  If I was that non-responsive at my job, I wouldn’t have that job anymore.  Ridiculous.  I am so frustrated!!!!

I hate everything.


It has been 61 long hours since I have smoked or had nicotine of any kind.  I find myself alternating between emotionally charged self-pity and wanting to cut people.  Any one.  For any reason.

It’s a good thing I cleared out all my ashtrays and emptied the trash…According to the smoking cessation apps I’m following, my sense of smell and taste have improved.  So all I can think of is how much better a cigarette would smell and taste now!!

I haven’t left the house in 2.5 days because I still don’t trust myself to not go to RaceTrac and buy a new pack…or carton.  Maybe later I will go for a drive.  Thankfully, I never started smoking in my baby, so that shouldn’t be a trigger.

Everyone says this will get easier.  When, exactly?  I still don’t know whether it’s nicotine cravings or missing the ACT of smoking that makes this difficult.  But either way, it can’t happen anymore.

I hate everyone.

Goodbye, old friend.

Down to One


I stalled for another 2 hours once I realized I was at my LAST cigarette in my LAST pack.  I freely admit, I don’t want to quit.  However, when faced with brain surgery and learning that nicotine (not just smoke, btw) can prevent the body (especially the brain) from healing as it should, I felt like I really had no option.  If I’m going to have this awful scary surgery, why wouldn’t I do everything in my power to try and ensure it goes as smoothly as possible?

I know I’m attaching way too much sentimentality to it, but I smoked my first cigarette sometime around the end of middle school and never looked back.  Once I moved out of my parents’ house, I was smoking about a pack a day.  And eventually, that turned into about 2 packs a day.

I’m one of those crazy people who “loves” to smoke.  There’s no way to explain it to a non-smoker.  The feel of that stick between your fingers, the crinkling sound of paper burning when you take a drag, the fire of a well-lit cherry, , and the smoke rolling into your mouth.  I will miss all of that.

I know a lot of my beliefs about smoking (it is relaxing dammit) are the nicotine/addiction talking, but whatever.  Bottom line is, no matter that I know how bad it is for me, I have continued to smoke.  If it weren’t for this blasted surgery, I wouldn’t be doing this….although, with my 40th birthday just around the corner, I was already trying to convince myself it was time to quit.  So it’s a little earlier than I wanted, but I know I need to do it….even more so now.

And so, at 8:35pm CT, I smoked my last cigarette.  And I cried for the loss of this “friend” I carried with me for the past 25+ years.


Decision made…I guess.

I got a callback from Dr Kutz today and was able to ask a few more questions, namely:

Q:  Does the middle fossa approach present more risk?

A:  Slightly higher risk of injury/damage to the facial nerve.  By “slightly” meaning a difference of between 7-8% chance with translab or retrosigmoid compared to 7-9% with middle fossa.  It’s slightly higher, but again, much will depend on the exact location, size, and characteristics of the individual’s tumor.

Q:  What are the chances of regrowth after surgery?

A:  Very rare in the cases were 100% of tumor was removed.  If part of the tumor is on the facial nerve and needs to be left alone, there is a slight chance of regrowth, probably around 5%.  In his experience, has only had 1 patient where this happened.

I talked through my “logic” again in terms of the way I was leaning, and he re-confirmed that that made sense.  That it really is about the patient’s preferences and tolerance for different things.  Aside from my other reasons, I just really don’t think I’d make a very good “watch and wait” patient.  Every little symptom causes panic and fear and I do NOT want to live like that.

So…..I told him I would like to move forward with surgery. The scheduler should be contacting me soon to confirm a date.

Oh, and Dr Kutz reiterated what Dr Mickey had told me, that I really should NOT smoke AT ALL (no ecigs, no patches, no nicotine, etc) for at least 2-4 weeks prior to surgery.  I’ve been waiting on a firm surgery date to figure out my official “no more smokes” date, but at this point, I probably just need to give myself a deadline.  😐

I really think I’m doing the right thing.

2nd opinion – now what?

I got through my 2nd opinions last week. The doctors at UT Southwestern seemed to lean towards either watch and wait OR go ahead with the middle fossa surgery. I have been doing lots of soul searching and praying and, while I still haven’t come to a 100% decision, my gut is telling me that I will have to do surgery eventually anyway….so why not get it over with now while the tumor is still small and there is a chance of preserving my hearing.

If I do the watch and wait approach, odds are good that the tumor will grow and I will eventually lose all hearing in that ear…..just no way of knowing whether that would be weeks, months, or years from now. And the larger it gets, it seems to me the more potential damage and complications possible with surgery.

I have gotten in touch with a couple of patients who had these same doctors (and 1 of them actually had the exact same type of surgery) so am talking with them for some more perspective before making any final decisions.

I realize how silly this will sound to my non-smoking friends, but one of the really crappy things (there’s lots of them actually, but this is what I’m stuck on right now…lol) about moving forward with surgery is that I will need to quit smoking a little earlier than I was trying to talk myself into! Seems like an awfully stressful time to give up my favorite vice!! But they tell me the nicotine (not the smoke…so there goes my idea of an e-cig) does something with blood vessels constricting which could prolong or even cause issues with recovery. Damn it.

First appointments today

From a message sent to friends today:

Thank you all SO MUCH for all the texts, messages, prayers and good thoughts today. After meeting with both the neurotologist and neurosurgeon, the short of it is about what I expected….both are recommending middle cranial fossa surgery. Still processing, researching, and trying to line up appointments for 2nd opinions, etc. But I wanted to send a quick note to let you all know that I DEFINITELY felt uplifted during my appointments today.

I cried before and bawled after, but was completely calm and able to ask lots of questions and understand what the doctors were saying DURING the appointments. My mom even commented that she was surprised how calm and collected I was talking with the doctors. Your prayers worked and I can’t thank you all enough for that!! Much love to all!!!

Acoustic Neuroma Association

The last few weeks, since this dreadful tumor was discovered, I have been scavenging the internet, trying to educate myself as best I can while simultaneously avoiding too many gory details or videos that will frighten me further.  I discovered the Acoustic Neuroma Association website, which has provided me with lots of information, information on support groups, a discussion forum, and more about this uncommon condition.  It is really nice to be able to read posts from other patients who are in or have been in the same boat as me.  Admittedly, some of the stories are absolute nightmares and scare me to tears, but I think it helps to at least have a realistic idea of some of the (many) risks of treatment.  None of them are particularly appealing, none of them are guaranteed, and none of them are without risks.

One thing I have read repeatedly is that, given that this is a rare type of tumor, it is absolutely critical that you find doctors with considerable experience treating acoustic neuromas.  And that you get multiple opinions and find doctors that you are comfortable with, confident in, and that have such experience.  I’m not sure what qualifies as “considerable” experience, but a basic ballpark I’ve heard/read a few times now is that they do at least 30-50 of whichever procedure (surgery or radiation) per year.

I have my first appointments with these specialists (neurotologist and a neurosurgeon) coming up but am already thinking I should consider 2nd appointments with some different doctors.  The ANA’s website does list places / doctors that have met their defined criteria, however, it is self-reported by these doctors (and presumably, there is some cost associated), so, while I’m trying not to put TOO much stock into that list, I do see UT Southwestern as the only place listed currently in Dallas.  So I will likely look to them for my 2nd opinions.

Test Results

Rather than re-writing all the details, I thought I’d just include a copy of the message I sent to a handful of friends about it on the day I saw Dr Arviso, my new ENT, to get my test results:

I would appreciate any prayers or good thoughts you want to send my way. I’m trying not to freak the fuck out just yet.

Some of you know I have been having vertigo off and on for the past 6 months and have lost partial hearing in one ear. I finally got my ass back in to see a doctor a different ENT couple of weeks ago (see, A? I kept my promise to you!!). They did a hearing test and confirmed I have lost some high-frequency hearing in my left ear.  Since then I’ve had a VNG test and MRI of my brain. I saw the doctor today to get the results.

Long story short, they found a small tumor in the auditory canal between my ear and brain. They believe it is an acoustic neuroma, which is a generally slow-growing, benign tumor (that’s the good news).  They also found a small cyst in my pituitary gland. They’ve referred me to a neuro-something-or-other and a neurosurgeon to review my scans and see what they recommend. It could be anything from just keeping a close eye and repeat scans over a period of time to radiation to surgery. I won’t know until I see these other docs so hopefully they can see me soon.

That’s really all I know at this point, and literally just found all this out today. I’m not too proud to admit I am scared shitless right now! I’ll let you know what I find out in the coming weeks.

…They claim that no matter what, the hearing loss I have is basically permanent and will not come back….it will continue to get worse.

Mom has already said whenever they can get me in to see these other docs that she will plan to come up so Nurse Mom can remain calm and ask questions that I wouldn’t think to ask. My brain pretty much shut down when they said “tumor” and all I could think was DO NOT START CRYING IN THIS OFFICE!!! Pretty much everything after that was a blur. Then I boohooed all the way home til I could scan the results and send to Mom before I called her because I knew she would want to see exactly what they said.

I do have to say, I was pretty disappointed that, other than these 2 issues, they said the rest of my brain scan was “grossly normal” and my cerebral-something was “unremarkable”. Don’t they know brilliance when they see it?!?!!! lol

I don’t remember what normal feels like.

I guess, if I want to start blogging again, I’m going to have to find some speech to text program to spare my poor arms and hands. By the time I finish the ridiculous hours of work, I’m in too much pain to come here and update. Work tells me do what is right for me…take care of myself first…then, oh, by the way, I need XYZ from you by 8am tomorrow.

I can’t remember what it felt like to be pain-free. Or to have a life.

With friends like these, who needs enemies?

Best Friends ForeverBest Friends Forever by Jennifer Weiner

My Review:  1 of 5 stars

The title for this book is misleading. It should have been called “The Only Friend I Ever Had Treats Me Like Sh*t But I’ll Do Anything For Her Because She is My Only Friend.”  Seriously.

It’s a story we’ve seen time and time again. Two girls become close friends at a young age. As they grow older, one girl, Valerie, goes down the “popular” road while the other, Addie, binge eats and gets made fun of mercilessly.

Then, here is where Valerie’s true colors start to shine through: She tells Addie not let the teasing get to her and that she should just try harder. Um….kids spray-painted her driveway with the words, “fat whore.” Sure, just keep on smiling, Addie. Valerie ditches Addie for her cheerleader friends whenever she gets the chance, and, when she invites Addie to a big party their senior year, she admits that it’s because she knew her mom would let her go if she was with Addie.

When I discovered the tragic incident from their senior year that was alluded to for the first hundred or so pages, I couldn’t have liked Valerie less. Addie speaks up to defend her and basically becomes the laughing stock of the school because, her best friend denounced what she was saying as lies and jealousy.

All of this is told in flashback as the story jumps from present day to Addie and Valerie’s past. In the present, Addie hasn’t seen or heard from Valerie in 15 years. The night of their high school reunion, Valerie gets herself into big trouble and ends up knocking on Addie’s door asking for help.

Addie, even though she’s managed to lose a ton of weight, apparently has still not grown a backbone because the rest of the story, she lets Valerie convince her to run from the law, half rob a bank, and lead her around by the nose (all on Addie’s dime). Up until recently, Addie has lived like a friendless hermit, sustaining herself with online purchases that keep her from having to leave the house.

There’s much more to the story, tragedies galore, a hint of romance, and more cliches then you can shake a stick at. If this is what Addie, or the author, thinks best friends are made of, I feel sorry for the both of them.

A big, long update on my stupid neck.

For the past 2-3 months, I’ve been having a lot of pain in my neck, arms, wrists, and hands. It started out feeling like I had just slept wrong and had a kink in my neck but within a few days it went down my arms into my hands. I have had a really hard time lately doing much of anything. The type and level of pain varies so it has been a day to day experience to see how I will feel. Sometimes it is extreme burning sensation, sometimes numb or tingling, sometimes dull ache, sometimes little to no strength in my arms, and usually a combination of all of these in different places. Pretty much anything using my arms and hands is, at a minimum, uncomfortable. Nothing I can do makes the pain go away, but sometimes it not as bad as others, so that is at least a tiny relief.  This happened once before around last Thanksgiving but didn’t get as bad or last as long (or maybe I just didn’t notice as much because of the horrible thing that happened on December 1).

Initially my doctor thought it was just tension/stress. So I started going to massage therapy once a week. While that seemed to help in some ways, in others I continued to get worse. Next, they thought it was signs of carpal tunnel syndrome, so I was sent to a neurologist for EMG and nerve conduction tests. He also ordered an MRI of my neck. The EMG and NCS came back fine, no nerve damage. The MRI showed that I have 4 bulging disks in my neck that are pinching and/or pressing into my nerves/spinal canal/cord.  He sent me to see a neurosurgeon to get his opinion on whether or not I needed surgery or if physical therapy might help.

The neurosurgeon wasted no time in telling me I needed to have Anterior Cervical Discectomy and Fusion to remove 3 discs from my neck. Based on my symptoms and pain levels, he said it would only get worse and that I could have permanent damage, even paralysis, if I didn’t have the surgery soon. He suggested within the next month. Not at all what I was expecting to hear so it completely freaked me out and scared the crap out of me.

Of course I wanted a 2nd opinion, so after collecting a number of recommendations from people, I went to see an orthopedic surgeon. He said, ultimately, yes, surgery is the answer but that I am far too young to have this kind of surgery right off the bat. If we could manage the pain, we could at least delay it for awhile. Then it would just be a matter of what I could live with. So he started me off on pill pack of steroids and said if they were going to help, I should see a noticeable difference within a few days. If not, then the next option was to do an injection in my neck and see how I responded to that. I didn’t see any improvement from the pills so now have scheduled the injection for Monday.

Meanwhile, Mom took a copy of my MRI to a friend of hers from church who she has known forever and who is an orthopedic doctor who treated her for a similar problem in the past. According to Mom, he is one of the most anti-surgery doctor she knows. He thinks I should go ahead and try the injection, that it might buy me some time, but believes I will need to have this surgery soon. Again, not what I was hoping to hear.

My aunt in Memphis had this exact type of surgery done a few years ago. Her neurosurgeon is apparently one of the first to do this type of surgery and is considered an authority on it. So she took a copy of my MRI to him this week to get his opinion. It will probably be Tuesday before we hear anything back on that.

At this point, I have 1 neurosurgeon telling me I need the surgery ASAP, 1 orthopedic surgeon telling me if we can control the pain I can try and live with it but ultimately will need surgery at some point, and 1 ortho telling me to try and get relief from the pain but I will need the surgery in the near future. I’m anxious to hear back from the 2nd neurosurgeon on whether or not he thinks I could have more problems/damage by waiting. That’s the last bit of info I’m looking for clarity on now. I’ve been told that the surgery would involve a couple of days in the hospital, anywhere from 2 to 12 weeks recovery, about 8 weeks in a neck brace, and 8 weeks of no driving. Needless to say, if it comes to that, Mom will move in with me for awhile!

On Monday afternoon, I’m going in for a Cervical Epidural Steroid Injection. It is an outpatient procedure but I will have to be sedated, so Mom is driving up Sunday evening to go with me and drive me home afterwards. She has had this same procedure done before and says it is nothing to worry about, but I worry about everything as it is…so someone sticking a giant needle in my neck is certainly not something I am calm about. I’m trying to be but not there yet.

We’ll see what my 4th opinion has to say about the surgery, but it seems like they are all pointing to having to do it. WHEN is the question. I’m not happy about it at all, especially understanding the whole “fusion” part of it. If I have 3 discs removed, that means 4 of the 8 vertebrae in my neck will be fused together. Which according to the doctors means I can expect to lose at least ¼ of the mobility in my neck. I keep hoping we can at least delay it a year or two and let science improve so the relatively new artificial discs that are now being used in the back can be used in the neck at more than 1 level with success, no fusion. Wishful thinking…

Anyway, that’s pretty much everything that has transpired over the last few months so now you are up to speed. My only experience with surgery or any type of major procedure is having my tonsils out. So to say I’m completely scared to death would be an understatement. I will keep you posted, but I’d appreciate any prayers or positive vibes anyone is willing to send my way.