What is a JayDiva?

JayDiva (noun) a writer of blogs who is an attorney, feminist, New Englander, child advocate, reader, hiker, cancer survivor, Mormon.



Tuesday, October 28, 2014

I Rang the Bell!

For months now we have all been anticipating the day I would get to Ring The Bell!

In the main waiting room of the Radiation Oncology department at Penn Medicine, there is a large stand with a shiny silvery bell.  Here are some photos of it--



The plaque at the bottom of the bell stand says, 

"The Bell Ringers.  As the sailing ships of another gereation relied on their ship's bell to signal their position in a fog, may this bell enable you who ring it to navigate your way to a life free from cancer." 

(Generously donated by Frank McKee, Grateful Patient)

My own personal Liberty Bell!  Liberty from being at the hospital for hours EVERY day, liberty from lingering cancerous cells in my brain, liberty from being states away from my marital home!  Liberty indeed!

Some of my radiation therapists came out from the back to watch me ring the bell.  One of them took this video (below) for me, hopefully you can see it...if not, I can email it to you :-)

Here is the YouTube link: 

http://youtu.be/naPpuU6cnTY

Saturday, October 25, 2014

GOD is not a word to fear

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As I am like to do, I was pondering the lyrics of a song performed by the amazingly talented Regina Spektor, entitled “Laughing With.”  Interpret it as you will, but to me it is about the double standard that people use when approaching deity.  When things are good, God is just a myth or a fairy tale worth rolling your eyes at.  But when things are bad, people are left with no choice but to plead for mercy from the God they’ve been ignoring or mocking while things were good.


Here’s some of her words:

…God can be funny
At a cocktail party when listening to a good God-themed joke, or
Or when the crazies say He hates us
And they get so red in the head you think they’re ‘bout to choke

God can be funny,
When told he’ll give you money if you just pray the right way
And when presented like a genie who does magic like Houdini
Or grants wishes like Jiminy Cricket and Santa Claus…

[BUT...]

No one laughs at God in a hospital
No one laughs at God in a war
No one’s laughing at God
When they’re starving or freezing or so very poor

No one laughs at God
When the doctor calls after some routine tests
No one’s laughing at God
When it’s gotten real late
And their kid’s not back from that party yet

No one laughs at God
When their airplane start to uncontrollably shake
No one’s laughing at God
When they see the one they love, hand in hand with someone else
And they hope that they’re mistaken

No one laughs at God
When the cops knock on their door
And they say, ‘We got some bad news, Sir’
No one’s laughing at God
When there’s a famine or fire or flood



This also reminds me of a quote written by Apostle-Scholar James E. Talmage about when people break the commandment “Thou shalt not take the name of the LORD thy God in vain,” as in “Oh, my God!  I can't believe she cut her hair,”  or, “Jesus!  You scared me…” or any other incarnation of speaking the name of deity when used not to identify God, but to express some unrelated emotion. 


Talmage said, “Even the profane sinner in the foul sacrilege of his oath acclaims the divine supremacy of Him whose name he desecrates.”

Jesus The Christ, Chapter 1.


At any rate, perhaps Laughing With is just a song, but I have seen these lyrics come alive for me in the past several months.  I have had those moments of panic after what were supposed to be routine tests, I have been in the hospital...a lot, I am getting more poor every day since I have had to stop working, and so forth.

As predicted by Ms. Spektor, I have been taking my relationship with God very seriously these days.  Take one look at how this blog has evolved over the past several months and my volume of expressed religiosity screams out!

This new focus on my faith may have alienated some people.  Discussing God and religion and personal faith-fostered beliefs is no longer proper, especially in commercial activities.  But you would NEVER believe how many people –strangers, even—once they get a whiff of what I am going through, absolutely gush about God.  At the very mention of the word, CANCER, people come out of the woodwork to ask God’s blessing upon me and to tell me they will pray for me.  America has long been held as a “Christian nation” but I have never seen any of my fellow citizens manifest this kind of interest in -or even belief in- God until this time in my life.



I think that when people are faced with their own mortality, or the mortality of their loved ones, for reasons that seem inexplicable and beyond their control, there is nobody who can honestly answer their questions about the afterlife and human existence besides God himself.  He is the only person left when all the rest is in disarray and tumult. 



This reminds me of a hymn called Where Can I Turn For Peace?

  1. Where can I turn for peace?
    Where is my solace
    When other sources cease to make me whole?
    When with a wounded heart, anger, or malice,
    I draw myself apart,
    Searching my soul?
     
  2. Where, when my aching grows,
    Where, when I languish,
    Where, in my need to know, where can I run?
    Where is the quiet hand to calm my anguish?
    Who, who can understand?
    He, only One.
     
  3. He answers privately,
    Reaches my reaching
    In my Gethsemane, Savior and Friend.
    Gentle the peace he finds for my beseeching.
    Constant he is and kind,
    Love without end.
     
    Text: Emma Lou Thayne
    Music: Joleen G. Meredith 
 

It should not have to take something devastating for people to try to talk to divinity, but in my experience, our lives are so busy and this world is so overwhelmingly distracting, that it often takes an Almighty slap in the face, stopping us dead in our tracks, for us to sit still enough to even contemplate prayer.


And all I can say that for people going through hard times, turning to God must be working.  It is those people who have suffered before, who are the quickest to promise that they will appeal to the Lord on my behalf.  It is like they cannot wait one second to do their part to help me find the relief that they found through God.

I would NEVER in a million years have expected this response from complete strangers while I bawl on a phone call to a 1-800 number...but it happens again and again.



Recently I had some difficulties at the hospital and my radiation appointment was pushed back an hour, then two, then four, and finally I was treated EIGHT hours after my scheduled time.  This was on a Friday.  I was scheduled to board a train to get to see my sweet husband far away in Connecticut after yet another distressing, lonely week of treatment away from him.  Of course, by the time I was at the train station, that scheduled departure had long since past.

When it became apparent I would miss my train, I tried to reschedule my ticket, only to be told that I would have to pay about $200 in up-charges.  I literally had $300 in my Checking Account and I knew that about $200 would soon be automatically taken out for insurance and energy payments.  I was in despair.  I think I called Customer Service 3 or 4 different times to see if there was ANY other option besides going home to my lonely little apartment with my mattress on the floor, and crying all weekend without my husband while my hair fell out all over my pillow.

On the last call, I mentioned that I had an appointment at the Perelman Center that day and that the Proton machines were down and I had to miss my train so I could get treatment.  The lady on the other end started asking me some odd questions, like the name of the wing I was treated in…I think she was testing me.

Suddenly she said, “Listen, I don’t know what you’re being treated for and I don’t need to know.  But I understand exactly what you are talking about—I was treated for cancer with Proton Therapy myself just a couple years ago and I know how challenging that is.  I will change your ticket for free; you just name the time.  Nobody else would do this, but it is the least I can do for you right now.  I’m sorry to overstep my bounds, I don’t know if you believe in God or not, but God bless you and I am going to pray for you when I get home tonight!”

I was in tears.  

I was so grateful for her generosity and for her fearless commitment to her faith- both of which she used to bless me, even though she could have gotten in trouble for it.



This has happened to me again and again.  People’s humanity and religiosity have been so raw in so many instances when I explain what I have been dealing with.  It has been so touching and refreshing to see this side of people.


Cancer strikes at will, it can target literally anyone at anytime.  Babies are born with cancerous tumors—they didn’t smoke, eat too much red meat, or not exercise!  They’re babies!  It is just one of those things that can catch people off guard and put their lives into perspective by force.



What I am trying to say is, don’t wait for disaster to strike before you make a self-assessment of your life and your beliefs.  Regularly set aside time for quiet reflection and ponder what you value most, what you feel is true, and what truths you want to pattern your life on so you can look back someday and feel like a woman or man who knows who they are, what they are doing, and why.  Surely we can’t know this all at once, but I promise that if you explore beyond what you can see and listen to that (sometimes pesky) little conscience, that you will make choices that bring your life more peace and value.

And don’t be afraid to share what you believe!  It does not have to be offensive to talk about your religion!  Stating what you have faith in, as a matter of fact, is not necessarily a way to compel conversion.  I don’t know when religion became so taboo and immediately taken as offensive, but it doesn’t have to be.  If someone’s cherished truths are precious enough for them to share, I request that you be open-minded enough to listen.


“Those who stand for nothing, fall for anything.”
-Alexander Hamilton



 16   For I am not ashamed of the gospel of Christ: for it is the power of God unto salvation to every one that believeth; to the Jew first, and also to the Greek.

 17   For therein is the righteousness of God revealed from faith to faith: as it is written, The just shall live by faith.



Also, I was elated to watch this short film about the pull between popular culture (especially for our poor teenagers!) and being true to one's religious beliefs.  LOVE LOVE LOVE this short film:

http://video.pbs.org/video/2365231021/

"Tryouts" from the 2014 PBS Online Film Festival

Tuesday, October 21, 2014

The End is Near! (And the beginning!)


I am SO happy to be able to say that I have less than a week of Proton Therapy left!  Only 4 more sessions!  I couldn’t be more pleased.

To be perfectly truthful, it has been wearisome, lonely, and even miserable on many days.  But I am feeling significantly better than I anticipated I would feel at this point, and I think I am doing much better than the average patient.  I feel alright, I just have extremely low energy and can’t seem to bring myself to do much of anything these past couple weeks. 

My appetite has been persistently odd.  But after I inexplicably lost 3 pounds in a week and the doctors all panicked that my measurements would be thrown off, I got this glorious prescription: “Eat all the ice cream sandwiches you want!”


(These^ have literally been my dinner for like a week straight)
 
Thanks, Doc, say no more.


Today I saw my dentist and of course he begins by asking, “So what’s new since I saw you in March?”

HAHAHAHA

I just laughed.

Where could I even begin?


But we both agreed that at least I got married in that time, and that was a very good thing. 



I am really looking forward to soon be able to feel like I’m married.  My husband and I have not been in the same state for more than a couple days (besides our honeymoon) since we went to see my parents for a week last Christmas!  Yeah, that’s nuts.  I started Proton Therapy in Philadelphia literally the day after we got back from our honeymoon and so I haven’t even moved into our marital home yet!  It’s the strangest thing.  And it is the little things that make it feel the most obvious and odd—we don’t eat out of the same fridge, our cars have license plates from different states, I talk about how the rain woke me up and he’s like, “You had rain?”

And then there’s the little problem that most of my clothes are already in CT except a couple skirts and shirts and a pair of yoga pants- which I have worn 24/7 for the past 3 weeks, once it started getting too chilly for the skirts.  I wore those pants ALL THE TIME such that they were starting to become a bio-hazard of stinkiness.  I couldn’t wash them, because I wouldn’t take them off…  I literally had to go to the store and buy sweatpants so I didn’t freeze to death walking to the hospital after I tearfully threw the yoga pants into the laundry hamper.

Oh, to have my possessions all in one home/city/state/region—what a luxury that will be!


But Connecticut better watch out, because I’m finally packing my bags and preparing to be on my way!