The Black Hole...

June 23rd and 24th were a big deal.  The three month MRI was due and we (her friends) aren't going to lie...the tension was mounting. Amy Jo had been recovering splendidly, but the MRI date was looming and would give a lot of information...wanted or unwanted. No amount of weed pulling in her ridiculously beautiful back yard (thanks to the hard work she calls "therapy") would stop the information from being delivered.  Scary stuff...  Thankfully, we had Dr. Amy Jo Carlson to diagnose herself the day before her Dr. appointment.

Dr. (Amy Jo) Carlson examined the imgages (sent home with her on a disc) and diagnosed herself.  Not a good idea. There was a melt down of sorts (to be expected when one tries to read one's own MRI!)   For 12 hours she was doomed.  Thankfully, she had an appointment with the real dude and he actually read the MRI right.  Lesson learned...

Do not send MRI DVD's home with Amy Jo until they have been read by an expert.

But yes, Amy does have a hole in her left frontal lobe.  It's there for good unless Tumzilla decides to return (black hole on the MRI).  It's very huge and disturbing.   Thankfully Dr. Salzar interpreted the MRI correctly and was very reassuring to Amy and her folks that she was healing beautifully.   We (her friends) are hoping Amy will stop trying to read her own MRI's.

Amy has another MRI in three months.  At that time it will be determined if she needs chemo or not.  Apparently it takes a long time with these slow growing things...she'll know more in August.  They can compare one MRI to another.

Next update in August!!  Keep her in your thoughts....

Tumzilla Update - Month of May

Well, I can't tell a lie...the sunshine, warm welcome back to St. Teresa's, and a feeling that there really IS a future has done a world of good for Amy Jo.  Sorry for the lack of updates, but realize that with Amy Jo NO news is Always good news...sorry, but it's the truth.

Recovery was almost a whirlwind with Lorena and the Carlson clan taking the reins.  Within a week, Amy was back on her feet, the family could go home, and she was functioning better than she had in months.  She spent a lot of down time, resting and recovering, but the old spark was returning faster than anyone (including her) could realize.  Tumzilla had been wreaking havoc and was now being replaced with healing spinal fluid (which Amy eloquently described as "a gushing feeling.").  Her bald headband was growing back and gave her something to fiddle with besides her teeth.

The time off gave Amy a chance to catch up on other health issues too.  Dentists, eye doctors, GP's, etc.  Even though Amy had just come through brain surgery without a blink, a visit to the dentist generated a real live panic attack...that's when we realized she was still healing and had to take things easy.  Thankfully, the dentists office came through, got her relaxed, and she was able to get treatment.  Unfortunately, when Amy got the bill, she had another panic attack.  She survived both of them.  (Just kidding about the second one...)

Anyway, for those who have been following the posts, Amy is doing better than anyone could have expected.  She is back to work, doing yard work, sticking with Heather when time permits, and is still healing and recovering every day.  She has an appointment for another MRI in June and she will find out then if chemo will be necessary.

Until then...

Her Friends

Tumzilla Surrenders!

Well folks...the battle comes to an end.  Although the war itself will continue for a few more months, the battle of Tumzilla has been declared a success by Dr. Surgeon.  What a victory!  After bouncing off the walls for a few days (due to the high doses of steroids post-op, and a few pain meds thrown in), Amy Jo had a bit of a sinker for a few days once the steroids were withdrawn. She was pretty tired and had to rest a lot (a no brainer to those of us with a full brain).  Pain level is down to a 1, meaning Ibroprofen is enough now instead of narcotics. Fluid is slowly filling in the hole left by Tumzilla (brain cells don't regenerate) and we can actually HEAR the gurgling sound when we put our ears by her head.  Imaging what it must sound like to Amy!  She says it's "weird" but not painful.

Amy had an appointment with Dr. Surgeon this morning and had her stiches removed. Dr. Surgeon told her that she was doing "splendidly" and cleared her to drive and begin very light exercise.  She still has to rest a lot, and will not be cleared to go back to work until April 4th.  She still has to go see the neruo-oncologist for follow up treatment, but will not need to see Dr. Surgeon again.

Anyway, she cheerfully DROVE her mom and herself to Wamego!  She plans to spend the next few days watching basketball games with her dad and trying not to feel guilty about resting in a household where "work and chores" are the norm.  Laying around watching TV is considered the work of the devil in the Carlson household, making it easy to see where Amy's tremendous work ethic and dedication to her career originated. Amy has ALWAYS credited her parents with helping her develop her "work" mindset, and looks back fondly on her childhood days in that respect.  Now, of course, both her parents WANT her to rest, but 38 years of operant conditioning doesn't go away in one weekend, Tumzilla or no Tumzilla!  They are going to have their hands full trying to keep her down instead of out in the yard looking for a tree to trim, fence to paint, or flowers to plant in the Carlson back yard.

So...even though Tumzilla has been defeated, there is always a chance that he may begin a dastardly plot to re-group and find a few evil little "Al-Quida type" renegades lurking in the crevasses of Amy's brain.  This guy still has a few tricks up his sleeve, and can be a pretty sneaky fellow, so she will need follow-up treatment and MRI's for several years to come.  Fortunately, Amy has great support from her family, friends and co-workers, a caring and concerned general practitioner (who hustled her up to KU med the very DAY Tumzilla was discovered) and had access to an excellent surgical/neurology team.  There are many things to be thankful for.

We will post updates now and then, but only if there is news that needs to be shared.  Your positive energy, prayers and comments meant the world to Amy Jo and there is no doubt that it helped speed her incredible recovery along.  Thanks to all who followed...

Amy's Friends

Amy Jo Speaks out...

The following words are from Amy Jo---

Hey everyone this is Amy writing from my home in Lawrence.  I just returned from taking Ollie and friends to the dog park!  It is amazing how well I feel...definately much better than I look.  Swollen, black and blue eyes, do not make one much of a looker.  My Mom is staying with me and trying to get me to sit down but I am roaming my house like a crazy person. 

Going through this whole tumor thing has been insane... but in a good way.  I realize that I will never again take for granted the days I wake up and feel good and excited about life.  I will never take my family, friends, co-workers and the power of positive thought and prayer for granted.  I was blown away by all the people following the blog and I give it much of the credit for my fast recovery.  I started with seven facebook friends and now have over 100! (103 to be exact)  It has been great to hear from some school friends that I haven't heard from in years.  (Heck if is takes a little tumor to get re-aquainted then thats what it takes!)   

There are so many people that have stopped their lives to help me with this condition.  My friends  who installed a shower, fixed things and organized a cleaning group at my house to make sure it was germ free... thank you soooo much!  Thanks also to my family and friends who sat up at the hospital for hours on end waiting for any word from surgery.  All of the cards and get well notes I have received have meant so much.  I have been touched by all the kindness and love surrounding me and  thank you all so very, very much. 

Amy Jo

Recovery Con't

Amy Jo is home and resting...um...um...well, her mom is kind of holding her down?  She's home, yes, but Amy Jo doesn't really care for the "sick role."  The hard part now is making her remember that she just had major surgery on her brain!  I don't think any of us can relate to how awful Amy felt while Tumzilla lived with her, because now it's "What are we going to do, today?" Ha!

Her face and eyes are impressively swollen and her scar stretches all the way across her head from ear to ear.  But the pain is down to a 1 - 2 from the surgery and the internal pain...the endless squeezing feeling, fatigue, double vision and dizziness are gone!  Without Tumzilla, Amy Jo is back to the old Amy Jo and boy are we glad to see her!  The problem will be getting her to rest enough to recover completely from the surgery, stave off infections, and realize that she has to take things slow.

As I empathize and try to imaging how horrible Amy felt living with a beast in her brain, I feel nothing but relief and happiness that she is already chomping at the bit to get back out there living her life. It's been a loooooooooong time...

We are going for a walk outside a little later.  Isn't that cool?  Also, Amy plans to write on the blog in a day or two, so keep following.

Amy Is OUT of the hospital!

Amy Jo is OUT!!  In fact, it happened yesterday.  Unbelievable that one can have their head cut open, have Dr. Surgeon dig around in ones brain for 7 hours, have their head put back together, then WALK out of the hospital two days after surgery.  And truthfully, she seems to have been ready (as opposed to the insurance company kicking her out).

BUT...guess what wasn't ready for her???  Her house.  I received the call about 11:00 am yesterday that she was getting ready to leave the hospital.  We'd planned to have her house ready by the weekend and panic set in as we looked at the incredible amounts of dust, equipment and general mayhem in the house created by the installation of a shower in her upstairs bathroom.  Aaron and Jason came down to Lawrence and we spent the entire day cleaning, washing the bedding and "de-germing" the house while my brother Danny (a saint very close to God right now in my eyes) and his friends worked until 2:00 am last night getting her bathroom finished.  What was an inconceivable mess at 11:00 am became a beautiful new bathroom with a strong handle bar (for balance) in the shower.  The fun part came at about 1:00 am when we hung the shower curtain, new towels and decor in her bathroom.   It's FABULOUS!!

While all this was occuring, Amy's internet cable broke, so I couldn't post any updates!!  So sorry for the frustration!  My brother is fixing it now.  Gotta love my brother.  Doing all this for Amy Jo just because she has touched his life.  He won't take a dime for it, either.  Now that's a good man.

Anyway, we sent Amy to Aarons house to stay.  From what I hear the Carlson family got together over there for dinner and games and she has been "cleared" to go home today.  She says that she actually feels BETTER now...3 days post op, than she has for the past nine months!  Tumzilla was slowly wearing her down without her knowledge, and now that he has been discovered and destroyed she's on the mend.

The really GOOD news is that her tumor was downgraded from a Stage 2 to a Stage 1 completely benign tumor.  No chemo.  No chemo.  NO CHEMO!!  Her hair looks ridiculous (her words) just bangs and a little hair in the back and her eyes and face are very swollen.  She is beginning to fight us on the pictures, but we're going to win that one and post a few later on.  She also says that she can feel her brain moving around in her head as it adjusts to the new found space and fills with fluid.  She indicates that it's not painful, just "weird."  It's normal, though.

I'll post another update tonight.  Now I need to earn my salary for a few hours...

No Dain Bramage

Amy wants everyone to know that she did not suffer any dain bramage!!  She has a new hair-do her sister calls a "skullet." (a variation of the famous mullet of the 80's)

Recovery Day One...

AMAZING!!!  Amy Jo is doing so well it's hard to believe that 24 hours ago Dr. Surgeon was knee deep in Tumzilla and probably starving about now.

Amy is talking, laughing, joking and winning over her entire health care team with her humble personality and cheerful laugh.  She is very tired, but she's been up walking (running a lap per Amy), sat in a chair for an hour, told us a few funny stories about her memories of yesterday, and passed all her cognition tests except one.  She DID remember her name, age and why she was here at the Medical Center.  But when Dr. Surgeon asked her to name the numerical equivalent of carbon on the periodic table of elements she retorted that is was a mean question.  They shared a laugh over that one and it was then we knew for sure that OUR Amy was still OUR Amy, only better.

She is now resting peacefully in intensive care, taking a much needed nap after a restless night.  I am in awe right now as I watch her sleep and realize that without the advanced health care, diagnostic tools, skilled doctors and nurses Amy may not have survived.  In fact, Heather brought up the fact yesterday, that if the two of them lived in some of the third world countries they have visited recently, they would probably both just get sicker and sicker then die in a few years.  So... flawed though our health care system may be in the U.S., today, I am grateful, Amy is grateful, and her friends and family members are grateful that medical science prevailed.

Amy sends her love and thanks for all the kind words and support.  Keep her in your thoughts.  Stay tuned...

She was warned

Looks like Amy is already having a little fun with her predicament.  Several photos of Amy Jo arrived on my cell phone before I even woke up this morning.  She was "pre-warned" that any photos, no matter how her hair looked were fair game for the blog.  So here it is!!

Final Score (Round 1): Amy Jo 1, Tumzilla 0

Final update of the day:  Not surprisingly, Amy Jo was already cracking jokes almost as soon as she came into the  Neuro-Intensive care recovery room and we were finally able to see her.  Of course, she won't remember a darn thing she said, but it was comforting to see that the Amy Jo we all know and love was alive and kickin'.  We could only see her for about 5 minutes, but she recognized us, called us by name and promptly informed us that her mother planned to adopt us.  This was a big suprise to Lorena, but ever the good sport, she agreed to the adoption.  That made Amy very happy.  She told us that she hurt, and the nurses promptly gave her pain medication.  The care she is receiving seems to be wonderful.

Her entire head is swathed in bandages, and we could see the area where her skull had been opened because a little blood was leaking through the gauze.  Lorena plans to spend the night at the hospital tonight...a grueling sacrifice because there is nowhere for her to sleep!  She will be relegated to a straight chair for the evening until Amy gets out of intensive care and moved into what is called 'Progressive Care.'  Those rooms have fold down couches and are much more comfortable than intensive care.  Several of us offered to spend the night so she could go home and get some rest, but she wasn't having any of that.  Heather and I will head back tomorrow morning to sit with Amy for the day and give her mom what will be a much needed break.

Amy is feeling the positive energy and love from her friends, family and co-workers and that kindness and caring  is absolutely the best medicine for her.  More updates tomorrow as information becomes available to share.  Stay tuned... 

Tumzilla is HISTORY!!!

Hello Dr. Surgeon!!  You know when the big guy comes out there's going to be some news.  And there is!!  Tumzilla has been relegated to numerous small jars in the pathology lab.  His exact words "The resection went very well, and Amy is doing fine."

The tumor was a oligodendroglioma probably stage 2 which basically means benign!! Unfortunatly, (but also as he predicted last week) Dr. Surgeon was not able to remove the entire tumor.  He had to leave a few Tinytumas behind.  He said this was fairly common because this type of tumor is not actually curable but one that can be controlled.  Let's see...what else did he say?  That's about it. All the brain surgeons I know are stoic and quiet like this guy...probably because they are so smart and spend a great deal of time dealing with...well...brains.

Amy will be up in an hour and we'll get to see her.  But for now...SHE'S OKAY!!  Buh bye Tumzilla...not nice knowing you at all...glad you are gone.

Update 4

Nurse L came out of the O.R. a few minutes ago.  Been about an hour and a half since our last update so we were relieved to see her.  Amy is fine, although Tumzilla appears to be a bit of a stubborn beast.  Doctor sent word that it would still be several more hours before he would have it completely sacrificed.  Vitals are fine and anesthesia still tolerated well.

We are still wondering in the waiting room what doctors eat during long surgeries.  Do you think a nurse brings in a pbj on whole wheat and a glass of milk, tenderly feeding him little bites in between snips of Tumzilla?  They never show that on Greys Anatomy.

Update 3

Nurse L just came.  They are down to Tumzilla!!  They are chopping him up into little pieces and part of him has already been shipped over to pathology to find out what kind of crud he's been storing.  The nurse did say that Dr. Lovick indicated it would be "hours" to get Tumzilla out and that there may be some residual pieces of tumor he will have to leave (Tinytuma's per Amy).  When we asked if Dr. Lovick had a stash of sandwiches in the O.R. to keep his blood sugar regular during this long ass surgery, she told us that he was in his element in the OR.  Stay tuned...

Update 2

 The nurse liason just came to see us.  Amy is doing well, vital signs are good.  She has an incision from one ear to the other straight over the top of her head, and they have drilled four holes on the right side of her skull.  They will "connect" the holes with a skull saw (or chainsaw as Amy's mom asked) and remove that piece of bone to be reattached after the tumor is excised.  They are ready to cut through the dura membrane and begin removing Tumzilla. Taking out the frontal parts will be fairly quick...the tedious part will come when he reaches the part of Tumzilla pressing on her optic chasm and olfactory (smelling) areas. 

By the way, they're going to be putting her skull back on with a couple screws which are going to stick out of her head and her eyes are going to be swollen shut. Stay tuned....

Surgery Day...Tumzilla's Last Stand

A very busy morning...mostly spent trying to park in the parking zoo, circling KU Medical Center for an hour trying to find everyone, and running into Amy's surgeon on the elevator (finally).  I guess if one needs an escort to find a patient, might as well go right to the top!  Anyway, he escorted me to the rest of the family, and I reminded him to wash his hands well before he cut open Amy's head.  I have to admit...hearing him laugh out loud (lol to you techie types) was very reassuring, and he guaranteed his best work this morning.  He did not appear to be hungover, tired, or fresh from an argument with his wife....all good.

Update 1:  Amy has been in the operating room for about an hour now.  Prep was about an hour also, so we haven't seen her for about two hours. The surgery is expected to take anywhere from 5 to 7 hours, and we have a nurse liason who will update us approximately every hour.  We are expecting one any minute now....

Time Change...Tumzilla spared another two hours...

Amy's surgery has been pushed forward two hours to 8:30 Tuesday morning.  Good Luck, Amy!!

Do you have an "AMY STORY OR MEMORY?"

So...we decided it would be fun for Amy to hear from some of her friends and co-workers after she begins recovery from her surgery.  Anyone who has a history with Amy has been privy to her special sense of humor and infectious laugh.

The blog is open for any comments...no need to join as a follower.  Just write your memory or story in the "comment" section and your post will be there.  Once she is well enough to read them, we can show them to her.  Just knowing how much everyone cares is certainly good medicine, but there is nothing she enjoys more than a good laugh...even at herself!

24 Hours Left

Today, Amy Jo is off to Kansas City to take care of business at work before she checks in at the hospital tomorrow morning.  She baked cookies for her advisory class (NO...she will NOT be teaching today!) and gathered up some materials for her subsitute teachers to ease them into covering for her at work during her recovery.  Her students know something is wrong, but they haven't been told yet about Tumzilla.  She plans to tell them today herself rather than letting them find out through the St. Teresa's rumor mill. 

The staff and administration at school, of course, were told last week.  The support has been incredible.  The principals, fellow teachers and staff are making things as easy as possible for Amy, and it appears that everyone is gearing up to make her recovery as stress free as possible.  Any one who knows Amy understands that her job is her life...and Amy has been so sick the past 6 months (without a diagnosis) that she's been feeling guilty about losing passion for her students, her athletes and her work life in general.  The fact that her brain was getting squished to smithereens inside her skull by a large foreign object is no excuse.  Amy is not used to making excuses at work.  She is used to performing and doing a good job, so this entire year (in hindsight) has been, (her words) "torture" for Amy.  Since just getting out of bed without having a blindness episode, dizzy spell, falling down or tremendous headache each day takes such effort, it's understandable that she would lose some passion.  For us at least.  Amy, of course, is still concerned about her students.  Go figure.

When she is done taking care of business at work, she'll head to her sister Aarons house to spend her last night with Tumzilla and her family.  Her mother and sisters will transport her to KU medical center at the crack of dawn and Heather and I will be hanging around too.

Before I sign off for the day, I want to mention one of her best friends Heather MacIntosh.  For those of you who don't know Heather, Amy and she have been the best of friends after meeting at St. Teresa's.  They have traveled to Africa, Cuba, Mexico, and all over the U.S. together.  They have been roommates for several years, and soul mates for much longer.  Ironically, Heather was diagnosed with breast cancer in January and has just had a double mastectomy (at the ripe old age of 37).  Even while this tumor was killing Amy off bit by bit before her diagnosis, she was by Heathers side during her ordeal.  Well guess who was right by Amy's side during this whole thing last week?  One week out of surgery, still bent over from the pain in her chest, Heather spent the entire day at the hospital with us while Amy was getting her dignosis, meeting with the surgeon, etc.  Pretty cool to have friends like that, huh?

Tomorrow is the big day and I'll have plenty to post when it's all over.  Stay tuned...

What's Going to Happen to Tumzilla???

Tumzilla is only going to reside in Amy's head for two more days.  The Surgeon thinks he will be able to remove the majority of the tumor without causing any neurological or physical side effects.  He indicated that he may have to leave some of it depending on the brain functions that will be affected if he removes the entire tumor.  If this is the case, Tumzilla will become Tinytuma and Tinytuma will be abolished with chemo.  He will not know her exact prognosis until her skull is opened, he can actually see the tumor, and the pathology of the tumor is reported.  We did learn that the pathology report is done right in the operating room.  Rather than opening the skull for a biopsy, closing it back up and scheduling surgery for a later date (as is done with soft tissue biopsies) the biopsy and excision of the tumor takes place at one time.  This is will reduce the trauma of enduring two surgeries.

Now the good news...per the neurosurgeon, the location of the tumor (right frontal lobe), slow growth (it's been growing two to three years), and Amy's good overall general health plus young age, he called her prognosis "excellent."  His exact words "If you MUST have a brain tumor, this is a pretty nice brain tumor to have."

Amy will be checking into KU Medical Center at 6:30 am on Tuesday, March 1st for her surgery and a three to five day hospital stay.  Afterward, she will go home for what is expected to be a month long recovery period.  Amy's mother and sister will be taking her to the hospital that morning, and she will have plenty of us waiting nervously in the waiting room for the surgery to be completed.  After her surgery, she will be moved to neuro-intensive care unit until the doctors consider it safe to move her to a regular hospital room. (Amy plans to ask the doctor if she can keep Tumzilla in a formaldahyde jar so she can impress her biology and anatomy students with a really cool item.  She thinks her students will prefer that over worms and dead piglets, but Amy's always been a little strange.)

Once Amy is released to go home, her mom, Lorena will be staying with her during her initial days of recovery.  My brother, Danny has been working at her house getting it ready to be a "recovery home."
He's finishing the remodeling of her bathroom which includes installing a new shower, putting up blinds, installing a XXXL dog door for her horse...I mean dog, Ollie (a gorgeous mantle great dane).

Amy is in very good spirits right now...she finally knows that she's not going crazy, imagining her symptoms (severe headaches, partial blindness, dizzyness, electrical zaps in her head, and intolerable pain and pressure in her head and back.  She has also experienced numerous episodes of blacking out, extreme fatigue, confusion and memory loss).  Since she finally has a diagnosis, her doctors ordered her some prescription pain medication to tide her over until surgery which has also helped her feel better.

Lastly on today's post, we wanted everyone to have her contact information and address:

Amy J. Carlson
1038 Lawrence Ave
Lawrence, KS  66049
Phone:  785-979-8242
E-mail:  acarlson@stteresasacademy.org

Amy also has a facebook account for any blog followers who have not befriended her yet.

Again...most of you who know Amy well understand that putting herself out there, baring her soul, discussing her illness etc. is very uncharacteristic of her.  But we (her friends) have already seen her spirits lifted by the outpouring of love and support she has received since the news of her predicament has spread.  It means a lot that you care and are concerned about her, and it warms my soul to see her smile when she gets a facebook post, a text or an e-mail from her friends and co-workers.

TUMZILLA Attacks...

In hindsight we should have been more vigilant about dogging on Amy (Jo, to her family) to see yet another doctor.  She hadn't been herself in...well...forever.  Former workaholic teacher and passionate coach, the old Amy was slipping away right before our eyes.  No one could figure out what was wrong with her, least of all Amy.  She could barely drag herself to work, much less try to figure out which doctor to see next.  No one could find anything wrong with her...from diabetes to hypertension to thyroid issues...Amy was fine.  She was beginning to think it was all in her head and that she was going crazy....  Little did she know that it really was ALL in her head. 

Since the discovery of "Tumzilla" last Wednesday morning Amy's life has turned upside down.  All our lives have. While trying to keep working, coaching and supporting her dear friend, Heather MacIntosh in her battle with breast cancer, she was slowly but surely losing herself.  A baseball sized tumor approximately 2 -3 years old was finally taking it's knockout punch in her brain. It took an ordinary eye doctor at a routine eye exam to discover why she felt so awful. He looked into her dilated eyes and saw a mass pressing on her optic nerve.  He immediately had her doctor order an MRI which revealed an 8 cm tumor in her right frontal lobe. 

More information tomorrow. 

Amy's Battle Begins...

For all the friends, family, co-workers, students and anyone else who wants to follow this journey with Amy...this blog is for you.  ANYone who knows Amy well realizes that she would never ACTUALLY produce a blog dealing with her health issues.  Too much trouble, why bother, I need to see another episode of Dr. G Medical Examiner, blah, blah, etc. etc.

Those of us who are like family to her, who love her, put up with her idiosyncrasies, laugh until we cry (when she is on a roll) and have earned the right to be called her closest friends have decided to keep folks updated through this blog.  Because we KNOW how many lives she has touched, how many people love her, and that many of you will be interested in her battle with... TUMZILLA (she named it...not us.) 

We have her blessing to post the updates and the information, but beware!!  Tumor humor is rampant right now as Amy begins her battle to save her life.

Her friends, Kathy Allen, Meghan Bardwell and Lauren Bova