Medical Update #2

Change and decay in all around I see;

O thou who changest not, abide with me!

Abide With Me!*

Text: Henry F. Lyte, 1793-1847

Since my last post, so much has changed, including my diagnosis and prognosis!  But the important things in my life have stayed the same—my sweet fiancé and I are still full steam ahead for our wedding and our lives together.  I love my family and they love and support me, which means the world to me.  I have continued to receive so much kindness, including countless cards from individuals and families in my hometown 3000 miles away, whom I was sure had long forgotten me!   Thank you so much for your love!

Just to reiterate, according to my surgical team, my surgery was “a great success” and 100% of my brain tumor was removed.  With such a major surgery, I have had a lot to recover from.  My angel mother is still here in Philadelphia helping me transition back to my normal life.  I still cannot drive, mostly because of my medication, and I still see physical therapists, occupational therapists, and nurses regularly.  But my recovery has been going spectacularly!  Besides my detailed pill regiment and my prohibition on driving, lifting, and straining, I am nearly back to my normal life. 

(No more staples!  And my shaved hairs are even starting to grow back!)

I am so pleased with my recovery, and I want to share that I am doing so well.  My staples are all out and my incision is healing really well.  But I also must share the fact that we have some new developments from my medical team.

But first, from John, Chapter 20, in the King James Version of The Holy Bible:

 24 ¶But Thomas, one of the twelve, called Didymus, was not with them when Jesus came.

 25 The other disciples therefore said unto him, We have seen the Lord. But he said unto them, Except I shall see in his hands the print of the nails, and put my finger into the print of the nails, and thrust my hand into his side, I will not believe.

 26 ¶And after eight days again his disciples were within, and Thomas with them: then came Jesus, the doors being shut, and stood in the midst, and said, Peace be unto you.

 27 Then saith he to Thomas, Reach hither thy finger, and behold my hands; and reach hither thy hand, and thrust it into my side: and be not faithless, but believing.

 28 And Thomas answered and said unto him, My Lord and my God.

 29 Jesus saith unto him, Thomas, because thou hast seen me, thou hast believed: blessed are they that have not seen, and yet have believed.

This is the story giving the Apostle Thomas the unfortunate nickname of “Doubting Thomas.”  He wanted to see the Savior in order to believe that He had really risen from the dead.  I feel for Thomas—how many people had honestly been resurrected before then?  It must have been pretty difficult to believe.  And Thomas probably saw Jesus die with his own two eyes, so it would be incredibly difficult to imagine that He was living again.  We are in the same boat in these days.  Most of us don’t have the luxury of seeing the resurrected Lord, we are those whom Christ spoke of at the end of the passage—“blessed are they (that’s us!) that have not seen, and yet have believed.”

I have been reflecting on this story frequently in the recent weeks because there has been so much unknown in my life; there is so much that I cannot see and do not know.  I have been waiting and waiting to learn about the pathology of my tumor.  I have not known whether I have cancer or not, whether I will have to start chemotherapy or not, whether I can carry on with my life as planned or not.  I just have not known.  I have been going to bed with enormous question marks hovering right in front of my eyes.

On Friday, July 11, and then again today, I finally got some answers.  And the answers included big changes from information I had previously been relying on.  The biggest piece of news after the full Pathology study of my tumor was completed is that my brain tumor was a totally different type of tumor than anyone had expected.  Rather than a benign Meningioma, it is actually a very rare tumor called an Anaplastic Hemangiopercytoma– and it was malignant. 

Now before you panic, it was not malignant in the sense that I have cancer.  This is the Good News: I DO NOT HAVE CANCER and I praise the Lord because of it.  There is no fear that cancer cells or tumors will appear in other parts of my body.  However, this type of tumor is very likely to grow back in the same spot.  So unlike what we thought before, my fight with this tumor is far from over and I will be monitored to keep it from returning for the rest of my life.

In an effort to jump-start my fight to keep the tumor from returning, it looks like I will be undergoing a gentle form or radiation called Proton Therapy. Although it is more gentle than traditional radiation, it will still be pretty intense.  I am not sure if they will wait until after the wedding or not to do it, but I will know a lot more after the first week of August, when I see the Radiation Oncologist whom my Chief Brain Surgeon gave my case to.  It is so amazing that I have such advanced medical facilities literally right down my street.  (P.S. Thank you Ian for giving me a tour of the Proton Therapy facilities last year!  We had no idea at the time that I would be a patient there, but knowing what it is all about and what it looks like has been a HUGE source of comfort to me.  You are such a great friend in so many ways.)  And if they wait until after the wedding, I still have my apartment in Philly through most of the Fall if I need to stay here for my treatment.  Things will be pretty crazy when that is all going on, but I am confident that it is going to work out.

I have heard from so many of my loved ones all over the world that they were worried about me, prayed about me, and felt in their prayers that everything would be alright.  I really appreciated hearing this from so many people and I relied on it for a time.  But one night last week I realized that I, personally, wasn’t sure if everything actually was going to be alright.  I was worrying about one day at a time, and I had not wanted to think long-term for fear of what I would discover.  But I needed to know for myself if everything would be alright.  One night before going to sleep, I sat up in my bed and about as colloquially as I would speak to my parents, I asked, “Lord, IS everything going to be okay?”

Immediately I felt an overwhelming sense of love filling my whole heart.  Words flooded my mind and I knew that I was loved by God and that He was watching over me and knew what I felt and what I was going through.  I felt as clearly as if someone was speaking to me face-to-face that I had a life to live, a family to raise, and people to influence.  Things will be difficult and scary and tough, but YES-- everything will be alright.

All of my doctors, including the Radiation Oncologist, are still on board for the wedding taking place as scheduled.  It will be a small, quiet, sacred occasion with my close, immediate family in the Manhattan Temple.  I bought new wedding shoes—lower wedges—so I don’t fall in my less-balanced state :)  Besides the lower shoes, everything will go as planned.  I think it will be a more meaningful occasion now that we’ve really fought for it.  I also am looking forward to seeing my siblings, grandparents, and other family members SO much.  They have been big supporters throughout my medical melodrama and I just want to hug them all, and tell them I’m okay, and thank them for their prayers.  (P.S. I am also graciously accepting prayers that it will NOT rain in New York on August 30^th!  PLEASE!)

(Here we are after church last week—my first time at Sacrament Meeting since my operation)

Two things have been keeping me stable as I work to get back to my life.  The first is my family, especially my parents.  The second is my fiancé, my dear Sweet Jack. 

When nobody knew I was listening as I was lying on my hospital bed in the Intensive Care Unit with tubes and needles going everywhere, I could feel that my parents and my fiancé were there with me and I could hear them talking.  Their words betrayed nothing but love for me.  In the middle of the night when a nurse asked me to rate my pain, I could see my dad shudder out of the corner of my eye when I disclosed just how much I was hurting.  My pain hurt him.  I could literally see his empathy.  I still feel his empathy from across the country.

My poor mom dropped her whole life to help me get back to my life.  She has been away from her home for weeks now, crammed into my one-bedroom downtown apartment like a hostage.  How strange it must have been for her to go from having an independent, adult daughter who was preparing to get married and run her own household, to having a daughter who couldn’t even shower without help.  I am 27 years old and after I got out of the hospital, my mother shampooed and combed and braided my hair every day!  Again and again this quote comes to my mind as I watch her calmly, quietly serve me without complaint, while I feel frustrated and helpless—

            “All that I am, or hope to be, I owe to my angel mother.”  --Abraham Lincoln

And the love of my life, my own Mr. Jackson.  I have relied on his confidence the whole way through.  From the very beginning of this battle, he has been there to tell me that we will get through this and that no matter what, he loves me.  Again and again he has told me that this is just a speed bump, and we are still getting married, having a family, and having a life together.  On days when I haven’t been so sure about all of that, his sincerity and hope have been my strength.

Now back to our friend, Doubting Thomas.  When Christ did appear to His disciples in John 20, what was the first thing He said to them?  Here His apostles were all confused, having seen their leader and their God killed right in front of them.  How scary and strange that must have been!  Christ’s first communication to them was PEACE.  “Peace be unto you.”  No matter whether their faith had been perfect or not, no matter whether they knew He was coming back or not, Christ invited them to have peace.

All around me seems to be change, fear, and worry.  I feel these negative words crowing all around me, like they are trying to box me into a corner.  I have realized that despite my valiant efforts at living a healthy lifestyle, and despite being a mostly good person, and despite planning out the rest of my life in detail, there are really very few things within my absolute control.  But two of those few things that I can control are (1) what I believe, and (2) how I respond.  I choose to believe God loves me, and I choose to make an effort to feel peace in my heart and mind. 

(Rescue of the Lost Lamb by Minerva Teichert)

And now, my sons, remember, remember that it is upon the rock of our Redeemer, who is Christ, the Son of God, that ye must build your foundation; that when the devil shall send forth his mighty winds, yea, his shafts in the whirlwind, yea, when all his hail and his mighty storm shall beat upon you, it shall have no power over you to drag you down to the gulf of misery and endless wo, because of the rock upon which ye are built, which is a sure foundation, a foundation whereon if men build they cannot fall.

Helaman 5:12  
The Book of Mormon.

Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.

John 14:27  
The Holy Bible.

When I felt at my lowest of lows and my world was turned upside down, I can tell you honestly that it NEVER even occurred to me to abandon my faith.  It seems counter-intuitive since faith is belief of things unseen, but when all was in flux and I could not see the end point of anything, the only stable thing I could see was faith.  If I allowed doubt to steal away my faith, I would literally have had nothing left.  My faith was all that I had as I was wheeled alone into the Operating Room, so I fiercely guarded my faith and, more importantly, it guarded me.

~

* Full text of the hymn Abide With Me!   Written by Henry F. Lyte—

 1. Abide with me! fast falls the eventide;

The darkness deepens. Lord, with me abide!

When other helpers fail and comforts flee,

Help of the helpless, oh, abide with me!

 2. Swift to its close ebbs out life's little day.

Earth's joys grow dim; its glories pass away.

Change and decay in all around I see;

O thou who changest not, abide with me!

 3. I need thy presence ev'ry passing hour.

What but thy grace can foil the tempter's pow'r?

Who, like thyself, my guide and stay can be?

Thru cloud and sunshine, Lord, abide with me!