Medical Update- the wedding is still ON!

Hello to our dear loved ones.  This is Linds and I thought it was time that people got an update.  First of all, to just ease a few fears and get things out of the way:

1.     I AM OKAY.  I am at home, not in the hospital anymore.  My mom is here taking care of me.

2.     I had a real life brain tumor- but it is now GONE.

3.     All signs point to it being a benign tumor, but Pathology is still scrutinizing it to be absolutely sure.

4.     The Wedding and Open Houses are still happening on schedule!

5.     I did NOT have to get my head shaved! :DDD

Beginning in February or March of this year, I started having some serious balance and stability issues—I would trip and fall frequently, have severe dizzy spells, and some nausea.  Just before we got engaged, a doctor diagnosed with me Vertigo (“BPPV”) thinking my balance issues were stemming from some inner-ear damage.  They gave me medicine and some physical therapy maneuvers to heal my inner ear.

Unfortunately, things actually got worse—I almost fell out my 3^rd story window one day in May!—so I knew I needed to go back to the doctor.  In the meanwhile, I was getting progressively worse headaches that seemed motion-related, like every time I stood up or turned my head too quickly.  There were a few other symptoms that I kind of brushed aside, like my handwriting getting clumsy and a few seconds of blurred vision once or twice. 

In June I went back to the doctor about the Vertigo and things did not quite add up for him—he was very concerned about the motion-based headaches.  We both thought it was over-kill at the time, but we decided to play it safe and order an MRI of my brain, just to make sure something else wasn’t going on.

So last month I had an outpatient MRI that was thankfully scheduled on a Saturday, so Clarence was down from Connecticut to attend the appointment with me, here in Philly.  We really went in expecting to find nothing and had just been joking the night before, “Will you still marry me if I have a brain tumor?!”  He said yes :)  Which actually turned out to be a big source of comfort for me later!

(My first night in the hospital before my parents could come to Philadelphia, somehow my Sweet Jack managed to squeeze into my hospital bed with me all night-- he was such a solace to me.)

We knew something was wrong when the MRI techs ushered us into a private room right after the exam and told us we had to wait for a doctor who was on his way from the main hospital building.  I already had an MRI follow-up appointment scheduled with my Primary Care Doctor for Monday (this was Saturday) so it seemed odd that they were in such a rush.  A doctor came in and said there were “abnormalities” on my scan and that the Emergency Room across the street was expecting me and I need to go there NOW.  Whoa.  And that’s all we knew.

So there we went!  As it just so happened, on that one particular Saturday, of all the days in the year, a very special doctor for the University of Pennsylvania was on-call in that ER.  They acted like he had never been on-call there before, but there he was.  It was Dr. Steven Brem- a world class neurosurgeon trained at Harvard, Cornell, Mass General Hospital (Boston) and now a hot shot at U Penn.  He reviewed my scans and immediately took my case.  Where all the other doctors were uncertain and wishy-washy, Dr. Brem was calm and confident.  He came in, showed Clarence and I some photos from my MRI and told us, “Yes, it is definitely a tumor.  It looks benign.  It is outside your brain on the membrane, not inside, making it a meningioma—which is the best kind of brain tumor to have if you must have one.” 

 (it is known as a "dumb-bell" shaped tumor because it has 2 separate round sides-- think like a weight lifting implement.  Because my sides were somewhat different in size, Dr. Brem said it was more like a Snowman, haha.  After the operation, he told me it was lemon-sized and quite deep.)

He said my type of brain tumor is his favorite type to remove!  Who has a favorite type of tumor?!  Haha!  Dr. Brem even gives lectures to surgeons on my type of tumor!  He said that my tumor spanned both of my hemispheres and was between a golf ball and tennis ball in size, and that it would be a very long and tricky operation because of all the nearby nerves and blood vessels, but that he could do it in one operation instead of 2, like most surgeons would have to, and that he could remove it all and it would not come back.  He provided so much information and stability and was such a breath of fresh air for us.  We relied on his confidence and knew he was there to help me.

All of my nurses reiterated that I had the best neurosurgical team.  Not the best in the hospital, or the best in the city, or even the best on the East Coast—but THE BEST.  And I totally agree.  People assumed I had come all the way from California for this operation with this team.  Members of my surgical team checked up on me around the clock and assured me that they would take care of me.  I told them that so many people were praying for them and that I trusted them. 

(This was from my second pre-operative MRI-- its pretty cool because it shows my eyeballs!)

Of course my first question when Dr. Brem said they wanted to go in and take out the tumor was, “I’M GETTING MARRIED IN AUGUST, YOU DON’T HAVE TO SHAVE MY HEAD, RIGHT!?!”  This is a question a bride needs to know, after all!  He was so understanding.  As it happens, his daughter is exactly my age and she got married right after my surgery—just a week after I had met Dr. Brem.  He definitely understood all the pressure and planning around a wedding and he was so sensitive about encouraging me—you will have hair, you will be able to see, you will be able to walk down the aisle on August 30^th.  It was such a blessing to have his compassion and empathy.

Just the day before the scan, Clarence and I were in New York City and I got my hair practiced-styled for the wedding.  I had been planning to have it up, but went for down and now I’m so glad I did, since wearing it down will cover all my scars!  Just a tiny tender mercy for a bride-to-be :)

Dr. Brem requested that I be admitted to the hospital so I could take the first available surgical spot with his hand-selected A TEAM to perform the surgery.  He said lots of doctors wanted to be in on my case, because the tumor was so large –it has apparently been just quietly growing there for years!—and I was surprisingly young, healthy, and asymptomatic.  They all expected me to be blacking out and unable to see all of the time, based on its size and position. 

So one of the hardest parts was just waiting in the hospital for 5 days for my surgery, still feeling like my normal self, and trying not to lose my mind being cooped up in a hospital room.  And this is where so many of my dear friends really saved me by visiting me at the hospital, cheering me up, keeping me company, and just helping me to relax in a stressful situation.  It all just seemed unreal—if my name were not on the top of that brain scan, I wouldn’t even have believed it was mine!  I just felt like my normal, slightly clumsy self!

I was taken down for surgery on Thursday, June 26^th.  I was put under general anesthesia around 1:00pm and after hours of complicated surgery and a blood transfusion—the tumor was very bloody and tricky—I was transferred from the operating room to the Intensive Care Unit around 8:00pm, if I recall.  My Surgical A Team totally came through for me—they hardly shaved any of my hair, the breathing tube did not hurt my teeth, my vision is mostly intact and improving.  And best of all, after a post-operative MRI and CAT Scan, they tell me the tumor was 100% removed and should not come back ever again—that this was a cure, not just a quick fix.   

I now have a whopping 31 STAPLES in my head to hold my incision in place and they added in some metal plates and mesh to my skull, which is kind of cool.  We’re still waiting to hear if I can go on an airplane for our honeymoon, or if we’ll need to wait for me to be cleared for that.  But the wedding train is still on its track!

They expected I would be in the ICU for 5 days after my surgery and then maybe in an outpatient care facility for a while after that.  I was out of the ICU in only 3 days and released home from the hospital only one day after that—well ahead of schedule.  I have nurses and physical therapists who come see me at home a few times a week and my mother has been my angel, helping me night and day and nursing me back to vitality as I slowly recover from such a major operation.

So the tumor was lodged on my Cerebellum, which controls coordination and balance, which is why my writing has been failing and my balance had been so outta whack.  I walk with a cane for the time-being, just for added support, and I take things slow as my brain bounces back from the pressure of the tumor and the operation.   I just have to sleep most of the time because I can’t let my blood pressure go up at all, to allow my brain and nerves to heal and decompress.  

Much of the work to remove the tumor involved separating it from my ocular nerves, so probably the hardest part of my recovery is that my vision is off.  Shortly after surgery, I was seeing very bad double vision and had big blind spots on the right.  But the surgeons expected all of this and prepared me for it, and my vision is slowly improving every day.   My eyes do get tired very easily and just feel over-stimulated as my nerves are recovering.

(Clearly not the most flattering photo, but I was so happy to leave the hospital after being there for 10 days!)

I can only walk a few blocks a day, which is so frustrating.  I ran the Philadelphia Marathon in November and a half marathon in March and I expected to be in full-on bridal fitness mode at this point.  So it is really tough to feel like I’m atrophying into a pale marshmallow person, instead of jogging my way to sexy, confident bride.  I get really jealous when I see people jogging and cycling, so that has been difficult.  But I am so grateful to be alive and I am so grateful to be able to celebrate my life, and me and Clarence’s love and to rally with my family and friends as I gear up for the wedding on my own little schedule.  This experience definitely came out of the blue, but I think it came at exactly the proper time.

I had already stopped working in anticipation of moving to Connecticut, so I did not have to worry about loose ends at work, and my work insurance was due to expire—you guessed it—the exact day that I was released from the hospital.  And I still have my own apartment here in Philadelphia where I can quietly recover and attend my follow-up appointments.  Things are progressing ahead of schedule and I feel the strength of everyone’s love and prayers everyday.

I have shed many tears of feeling overwhelmed—but far more of them have been because I was so overwhelmed by the love and compassion and care of all of you reaching out to me and my family and fiancé.  Far fewer tears have been shed feeling overwhelmed and afraid of my diagnosis.  This has really changed my heart to see so much good in people and to want to share more love, knowing what a difference it can really make for a person in need.  I have felt the sweet assurances of Priesthood blessings and prayers from all over the world and it has all meant so much to me.  Thank you for your love, I love you all too!   

Thank you, thank you, thank you!

<3