MRI's and claustrophobia.

Oh geez.

Since I can't start my story with today, I'll start it with Monday.

I've been having pain in my axilla (aka my armpit... aka Bob's home 2.5 years ago). I told my doctor about it, said I wasn't sure if it was scar tissue irritating the nerve or new Bob tumors (he was resected, so there are lots of little Bob's that the hope was they would lose their blood flow and die, not regrow). Anyway, the doctor suggested an ultrasound.

Wednesday had the ultrasound.

I saw on the screen, the oval thing she was measuring.

Only I found out later, they were oval thingS. 2. They're about 1x2cm each. They are lesions (masses). Not cool.

My doctor wants an MRI. Of course I agree.

A referral snafu ties it up for 2 days, and they get me into the MRI machine at the hospital on Sunday (today).

Only it didn't get done.

I've had MRI's before. Even an MRI of my axilla!

But today I FREAKED OUT. I had the worst panic attack I have ever experienced. I was shaking so hard my arms were banging the machine. I seriously lasted only about 10 seconds in the MRI machine before they had to pull me out (or I would have been clawing my way out). Apparently I am severely claustrophobic.

They told me I needed to contact my doctor about sedation and then, once that's set up, to reschedule. I'm trying to figure out how much they would have to sedate me to get me in that machine for 30 minutes or more. It's a full chest MRI with and without contrast.

Anyway, a bunch of updates in one. I have plenty more about other life stuff, but this seems to be taking priority right now.

Ugh.

1 Year Bob-iversary

Today is the 1 year anniversary of the removal of Bob.

Rest in peace, Bob. And I hope all your little bitty pieces stay little bitty and don't grow.

BENIGN!

The pathology came back, and Bob was a "well-differentiated schwannoma" - which is BENIGN!!!!

Greatest news ever.

I celebrated by going for a run last night... After 8 months and 3 surgeries, I am taking my body back. If they want to take anything else out, they're going to have to catch me!

Ah, the beautiful pain of running. How I have missed it.

Love to all!

Surgery Details

I'm finally getting around to it... Most of them are in my previous post, but here's the whole boring (thankfully!) story...

I checked in at 5:30am, and by 6:15am had finished the admissions paperwork. They were waiting for me, and immediately took me to the 2nd floor - the pre-op holding area. The Hubs and my grandmother, Nanny, had to wait downstairs...

I had to do all the normal prep stuff (minus peeing in the cup - yay for hysterectomies!). I had to take *everything* off and put on their weird hospital paper gown. I joked with them about the necessity of taking my undies off for an armpit surgery (its because in long surgeries bunched clothing can cause sores, bruising and other issues).

I got my IV. My least favorite part!

At this point it was around 7am.

They let The Hubs come up, to say goodbye.

The neurosurgery resident came by and drew on Bob (marking the surgery spot). The anesthesiologist came by, as well as the assistant. We went over the risks and my health issues. He told me he was also planning on giving me lidocaine during surgery for my PVC's. He was awesome. Then the doctor in charge of the OR came by.

I noticed they were looking around, and the dr left. Then the anesthesiologist said it was time to go, and started moving the bed.

For the first time in any of my surgeries, I started crying. The Hubs kissed me goodbye and headed downstairs as they rolled me into the operating wing.

Just about then the goofy juice kicked in... There were tons of drs and nurses gathered outside the OR's in various hallways... The anesthesiologist was wheeling me, and I laughed "one point for nurses, two points for doctors!"

Next thing I know we're in an OR and all the people I met are scrubbed up. I move myself to another bed, and they put the oxygen on...

I woke up pretty pain free in post-op. The first thing I see is my anesthesiologist, another dr and a few nurses standing around my bed looking up at my monitor. They notice I'm awake and the anesthesiologist says "Your heart was freaking out a little. Don't worry, we gave you something and it looks like you're doing fine now."

Everything else was uneventful. My doctor apparently said I did so well I could go home that day if I wanted. I'm sure it had a lot to do with the fact the hospital was full (neurosurgery had no beds).

Roughly 7 hours... Procedure time was 4.5 to 5. Looooong time, but pretty much what we expected. When we left, my grandmother took me to Walgreens... I wouldn't stay in the car (she mentioned something about hard-headed...). I promptly threw up a ton upon my arrival at home. Bad choice, apparenly :P

Most of Bob is gone - he had to leave a little... Which means Bob may be back.

He had to cut a nerve fiber that was too involved in the tumor. We won't know the permanent affects of that for a few weeks - that's when the nerve starts to calm down from surgery trauma.

Right now, I have a little incision pain. I am hypersensitive in my hand - the middle and pointer fingers hurt horribly with any touch or even a breeze. The entire underneath of my arm is DEAD numb... Like I can pinch it and feel *nothing*. Hopefully all that resolves.

Other than that, normal surgery recovery. Tired, some nausea...

But Bob's reign is over!

Now if I could just get the pathology report... Its not back to the doctor yet :( I'll post as soon as I know anything.

Bob is No More!

I'll post a longer update later, but here's the proof!

New Bob Photo

Here's a new pic of my neurofibroma/schwannoma (aka Bob).
Taken 6/6/2009.

Counting Down...

Days 'til my insurance starts paying for medical costs again... 8.
Days 'til I see my neurologist... 17.
Days 'til I have surgery... 26.

These have been the longest 6 months of my life. And its almost over!

Don't you know the insurance company is going to poop their pants when they see my June totals! Surgery will likely be 6-digits, and my max out of pocket is 7 grand. Eat it and like it Great-West/Cigna!!!!!

Brushing

Add this to the list of things-I-thought-wouldn't-work... Only it DOES work. For JT at least.

Its called brushing therapy, and its kind of a deep pressure brushing with this special brush (pictured). The input from brushing actually calms JT down.

I gotta be honest... I love the OT, but I thought this was just a bunch of phooey... Until I started doing it at home.

JT started kissing us the week after brushing was started. He likes it, too (I don't blame him, it feels pretty good).

Who knows how long it will be effective for... But I am glad I was wrong! Sweet!

JT is done with the regular school year. We all went to his ice cream sundae party yesterday for his last day of school. He got a sweet award - for "Making me smile every day!". How precious! ESY is the 2-3 week of June and then again in July.

Oooo - and Bob's gone 4 weeks from tomorrow!

YAY!!!

Wow!

We're down to five weeks and two days until Bob is gone! (That's 37 days if you're counting like I am). Only four weeks til my neurology appointment, and cardiology is soon after (hey, after my hysterectomy scare, I am making sure I am going to wake up from this one!).

I am still in shock that in our wonderful country, health care is not guaranteed to those who need it. I'm even paying for it, and not getting it. Private health insurance companies are out of control, and we, as Americans need to make sure that it stops.

Here are some crazy thoughts for you:
Your medical tests depend on approval from a non-medical person based solely on their (non-medical school) judgement.
They don't know you, your doctor does, but their opinion determines what you can or can't have done.
In order to get a medical doctor to review a rejection, you have to request it thru the insurance company (and they don't have to do it).
Insurance companies can write anything in their clauses (such as my case - a first year max even though none were pre-existing conditions) and you don't have a damn thing you can do to fight it.
To them, you are a number. It's all about their bottom line. There is no way they can be working for you AND trying to make a profit. It doesn't make sense. They have a HUGE conflict of interest, and you will ALWAYS lose to them making more money. They are a business.

As soon as I am recovered from all my medical drama, I am going to start volunteering for organizations interested in health care (specifically insurance) reform or complete overhaul. It is rediculous that this is what we accept. Did you know that America is one of the only developed countries in the world where health insurance is NOT guaranteed? We lived in England for two years... And we used the health care there. I didn't see a difference. Private health care wants to scare us all into thinking we won't receive care if we turn it over to the government... But of course they do... That's where they make their money!

Anyway... Just thought I'd share some of the rediculous discoveries I've made during my time with Bob. I hope you learned something ;)

Love to all!

Yay for Distractions!

My mom and nanny (aka 'Nanny' and 'Miss Great Big') were in town Tuesday thru Thursday of this week. We enjoyed seeing them so much - especially Audrey... Who now misses them a whole lot :(

I am now down to 7 weeks (a little less, it was 7 weeks yesterday) until the tumor is gone. I am so ready to get this sucker out...

JT is making incredible progress at school still... His teachers stop me at least once a week to tell me they see him doing something - playskills, language, etc - that he wasn't doing the week before. What an awesome, awesome feeling!!!

I hope everything is going well for everyone!

Say Hello to Bob!

(terrible pic, but I can't get a better one...)

JT, School and Lots of Driving

Yep, that's all that's really new around here.

JT started school last Monday. He seems to be okay with it... He goes Monday, Tuesday, Thursday and Friday from 8:25 - 11:30am. He cried Thursday and Friday, which not only crushed me, but upset his big sister a LOT. She was so upset we had to leave him there crying...

Which leads to the funny school story of the week... JT fell asleep on his desk Friday. 3 years old and already falling asleep at school, LOL! He had also just gotten a (black) stamp on his hand, and so he looked all polka-dotted when we picked him up. He was so exhausted Miss Maggie (his teacher) had to carry him out. See, JT has been sleeping in this baby crib in his room that we just had in there to put stuffed toys in... He stays up and 'makes his bed' by pulling all his blankets and pillows off his REAL bed - then sleeping there. He does NOT want us doing it - so this is the new routine, I suppose.

We drive SO much now... We leave our house at 7am, drive The Hubs to work (about a 35-40 min drive), turn around, drive JT to school (45 min drive to an hour). Then I pick JT up at 11:30, we go home (about 25 min drive), then we pick daddy up at 6:15pm. It pretty much sucks, but I don't want JT on the bus - he's only 3!!! - and I don't think he's secure enough with the transition to school to successfully deal with the bus. Plus - mommy isn't ready to give that up yet... Another hour or more my baby would be gone... Nosiree.

I'm still dealing with the dang headache from hell. Have no clue what is going on, but we're coming up on about 6 weeks straight of it... And I can't handle much more. I have 2 months and some change until my insurance will pay for anything... But I may end up at the doc's office before then. My head is not doing so hot! Bob, on the other hand, has pretty much settled himself down and stopped growing (praise God!), so I'm feeling pretty good about the surgery having to wait - it wasn't the best case scenario, but at least Bob is behaving!

Audrey has a birthday party today at Chuck E Cheese (Happy Birthday Emily!), so we're all heading that way in just a bit.

That's all for now... Hope everyone else is doing well!

Love to all!

Oh man!

Surgery was rescheduled. My insurance company refused payment, so they can't do it.

It's now June 18th.

The neurosurgery scheduler told me "the doctor said you would *probably* be okay until June". Niiiiiice. Great. Very unconvincing.

JT's IEP went terrific. I was really impressed with the teacher (again) and all the therapists. With all the horror stories about IEP's, I feel like we are really lucky. They are trying everything to make sure JT has all the supports he could possibly qualify for.

So, please pray that Bob will behave, and that I will, in fact, be fine in waiting until June. Because I don't have another choice.

Audrey is ADDING! And JT is still just trucking along with his language and counting, the alphabet and colors.

Hope everyone else is doing well...

Love to all!

Yikes!

Time is going by too fast!

This week we have JT's IEP meeting, so he'll probably start school next Monday. I am SO nervous about that!

Then, my pre-op appointment is 3/9 at Vanderbilt, and surgery is on for Friday 3/13. I'm surgery #2, so I get there at 9am and surgery starts at 11am. It's a 5 hour surgery, so I'm a little nervous... Okay, a LOT nervous. But 'Bob' is making me feel SO sick, it is time for him to go!!!

I have been warned that I won't have much function post-op in my right arm. The incision may just be a 'Z' in my armpit - or it may go all the way up to my neck. It depends on if they can get it out using the smaller one. I also got the warning about the possibilities of negative outcomes... There is a vein and an artery on each side of the nerve, so if something happened (which it hasn't before, nor do we expect it to) I could lose my arm. Just about jumped out of my skin when he said that! They know about my morphine allergy, so hopefully no surprises for my nurses this time!!!

JT is counting to 13 (haha - just realized the relation to the paragraph above!), and Audrey has taught herself how to add... JT is still talking like crazy - my current favorite is (of course) Momma and 'Aw, man!' (just like Swiper!).

The Hubs's store did really well for the month of February - just hope that continues!

That's all for now, my hand REALLY hurts now when I type for too long.

Love to all -
Kate

Staycation

Our stay at home vacation has been wonderful... Relaxing, cleaning, taking the kids to do fun stuff... I can't believe how fast it's gone! The Hubs goes back to work Monday morning, and it'll be back to the daily grind again.
I'm still pretty bummed I didn't get to see my brother... But I know he understands, it's definitely not because I didn't want to be there... Because I was really looking forward to seeing him :(
I have my appointment Tuesday - it's coming up quickly, too. My regular doctor called and told me I can't wait until June, that the hospital will have to work something out with me. Sucks, but now it's starting to hurt bad enough I believe her. It's getting worse day-to-day, and comparing the size week to week is getting crazy... It's growing so fast.
Audrey and I are at the library... I overheard some people the next table over talking about how amazing it was that kids could work computers, and look at that little girl - she's got it all figured out and she's so young... How smart she is... I turned around, and they were pointing at Audrey! Made me smile :) My smart girl, indeed!
JT is napping at home with daddy. He was all played out. Wrestling with The Hubs has them tired by the end of the day... I'll miss that for sure when he goes back!
Onto some super-exciting news... I got offered an opportunity to write an article for Nike through one of my freelance sites!!! I am SO excited!
Now that we're well again, we're going to church (Emmanuel Presbyterian). We start a class at Vanderbilt for parents of kids with autism. It's Tuesday nights from 6:30-8:30pm. We really enjoyed the last class we took, so we're really looking forward to this one. It's so comfortable and fun to be with parents who truly *get* the weirdness of autism... And can laugh about it. It was an awesome experience.
I hope everyone is doing fantastic... We certainly have a lot of things looking up on our end!

Wow!

Sorry for the delay in posts... We got rid of our internet connection at home (dial up was costing us $50 a month!!! and that's just rediculous... In the podunks, there is no DSL, and the phone company rips you knowing that dial up is your only option...), so coming to the library is my only chance to update... I will be more consistent now!

Latest news...
I found out I've met my first year max on my insurance. Because we had a 5 month lapse in coverage (between when I resigned and the next 'open enrollment' - insurance costs $260 A WEEK at hubby's job - it's through Great West - which is now Cigna - if anyone wants to barrage them with the rediculousness of the price), my personal max for year 1 was $25,000. Because of my two surgeries and multiple ER and doctor visits, I'm SOL until June 1. So, me and 'Bob' (yes, I gave my tumor a name...) are going to be thisclose. My doctor is working on finding something to help me, since she thinks it needs to be removed before then due to its rapid growth (duh) and nerve involvement. Not only is it growing (which means that something is going on that is not totally benign - although not necessarily cancerous yet), but the bigger it is the more they have to screw with my nerve - and that means more problems both short and long term with function.

I do have an appointment at the Vanderbilt Ingram Cancer Center with Dr. Kyle Weaver on February 24. I am looking forward to meeting him - hopefully he will have the experience necessary to do the surgery (even if it is in June, we can set it up and have everything ready to go... I'm paying out of pocket, but c'est la vie...). He might have other resources to help me get the surgery done if he believes it has to be done... Or, I would feel a lot better if he said it could wait in his medical opinion, and he would just set it up for June... Either way, I need to do this appointment. I almost peed my pants when I opened up a letter welcoming me to the Cancer Center, but I'm over it now... Mostly ;-)

JT is talking like CRAZY! I'm about to update his page too (see top right corner), so check it out to see his latest progress. Amazing!

The Hubs is off for the week, but due to the insurance issue (I maxxed the last week of December... So EVERYTHING I've had done with Bob is out of pocket... 3 GP appts, 2 ortho appts, 1 gen surgeon appt, 1 neurosurgeon appt, ultrasound, MRI and blood work) we are staying put... We can't really afford to go anywhere right now.

We found a church we really love. It's fairly close to our house (closer than most things... We don't really live 'close' to anything). I love the pastor, the people, and how informal it is. The people there are wonderful... And for the first time, going to church isn't about making me feel guilty about what I have done... But learning how to be a better person from now on. It's a wonderful experience. Never thought I'd look forward to church, but I honestly do!

That's about it for now.. Audrey is doing fantastic (as usual). Such a sweet little girl. She had a hearing test, and she passed with flying colors. The tech noted that 'when she pays attention' she was awesome. How my daughter got distracted in a soundproof booth is beyond me... But, have I mentioned I have ADD? Yeah, she's probably going to come by that one naturally... At least it's easy to manage - she'll just have to find her own 'The Hubs' to marry later in life to balance her out!

Love to all!

So Much For That!!!

Today I met with one of the best Neurosurgeons in Nashville. (Don't believe me? Here's Dr. Howell's profile - of the Howell-Allen Clinic in Nashville). He was an awesome doctor - I would highly recommend him for anyone who needs a neurosurgeon in the area.

He said that he's not experienced enough with brachial plexus surgery to take this lump out. He insisted it must come out, and was concerned over its growth and new pain.

He promised he would find me the person he would want operating on his brachial plexus. He wants to try Vanderbilt, but mentioned that the surgery might not be in Nashville. He said he would 'have no problem calling across the country to find the right surgeon to do the surgery'.

I guess I didn't realize how complicated this really is. I thought surely this was a common neurosurgery issue, and they would schedule me right in and take it out, no problems (besides maybe some physical therapy, etc).

He's calling me back in the next few days with more information. I'm hoping to get this sucker out soon, but I'm not holding my breath. I swear, nothing is ever simple when it comes to my medical issues!!!

Pictures :-)

It's been FREEZING here lately... Which makes the next tidbit funny... Kinda. The Hubs shaved JT's head - and the guide fell off, meaning JT's head is almost completely bald! I went to go work out yesterday, and came home to see my hairless baby! Here's our sweet little guy with his new 'do.

Audrey is completely in love with her friend Grant, and only took this picture so he could see it. Grant is a sweet little boy (who gave Audrey a ring, lol). He's the son of one of my bestest buddies. Here's her pic for Grant.

And, here's my alien egg (I'm still hoping it's gold... I'll be singing the Backyardigans song "Gold, gold diggin, diggin for go-old!" going into surgery I suppose...).

(compare to the previous pictures)

Nothing else new :-) Just having fun INSIDE while it's so cold!

If a child is to keep alive his inborn sense of wonder, he
needs the companionship of at least one adult who can share it, rediscovering
with him the joy, excitement and mystery of the world we live in.-- Rachel
Carson