Wednesday, July 29, 2015

Tiny Veins, Healing Brains

(Sorry for the repeat, this is also on Linds' blog)


BIG follow-up appointments this month.  I spent hours and hours and hours at Yale in the middle of July.  Honestly, most of those hours were spent letting people try to find my veins with needles.  WORST THING EVER.

When I went for my MRI, I had an order in for bloodwork, so they decided to take the blood while they were finding a vein to prepare for when they needed to inject contrast (dye) to make things show up on the MRI better. 

So there I sit in the waiting room wearing, I kid you not, paper pants.  Imagine paper towels…in the shape of pants.  I’m not sure what Yale has against hospital gowns, but paper pants are ridiculous, not to mention freezing cold, especially with how hospitals love to blast the A/C.

So I’m shivering in my new paper towel outfit when I tell the nurse, “Look, I have small veins, so you might as well save us both some time and call your supervisor over to stick me.”  She ignores me.  I know she can’t handle these veins, but she is confident.

Three needle sticks later, she decides to call her supervisor.

And those had not just been polite little needle sticks, but each was a slow stick followed by pulling the needle in and out, and rooting all around under my skin.  Ouch.

The supervisor tries twice more and, rather than admit defeat, she declares me too cold and relegates me to a wheelchair in the corner where she covers me with wet, warm towels.  I was like a big white snow man, with melting paper pants.  Then they forget about me.

Meanwhile, some dude is having a panic attack in the next cubicle, cussing out the nurses, and faking chest pain to get out of his MRI.

Oy.

They remember me again.  This time the floor supervisor tries, declaring, “I prefer to use the bigger needles.”

Why, Zeus, why?

She even uses the ultrasound vein finder machine, but no.  After rooting around and making me bleed everywhere, I have nothing to show but a lap full of bloody gauze and alcohol pad wrappers…and three more bruises in my hands and wrists coming on.

Believe me when I say that repeatedly hearing the phrase, “Oh, I blew out another vein!” is seriously disturbing. 

Her one accomplishment was drawing some tubes of blood from a vein in my hand.  IN MY HAND.  So much pain...  I just don’t think that is supposed to happen.  My purple and green hands and wrists confirm this belief. 

Then they forget about me again.

And finally, an expert from anesthesiology comes in, and even she needs to try twice.  She implements the slap the patient’s arms silly approach, which is rather painful considering my arms and hands are full of holes at this point.  Then finally, FINALLY I get an IV in for the MRI. 

Meanwhile, I’ve blown hours past my MRI appointment and my oncologist appointment.  It literally took hours to get one, stupid IV in.  At Yale-freaking-hospital.

Fortunately, after having done everything in my power to not cry for the entire morning, things did get better.

After the MRI, I was ushered right in to see my neuro-oncologist (he is awesome)—apparently he sent out search parties to see what the heck was taking them so long to start the MRI (a very good question, dear doctor).  He and his assistant reviewed the images immediately.  Although nobody to-date has been able to give me a definite “cancer-free” assessment because of all of the post-surgical blood muddling up the MRI scans, my doctor was confident that all he could see on my scans this time around is scar tissue, no polyps or unusual things of any kind.

His confidence is so reassuring.  Nicest of all, he gave me some advice—which Jack is very quick to remind me of—he said, you should not be thinking about this every minute of every day, don’t be afraid to live your life.

That was a powerful moment for us.

At Jack’s request, the doctor also gave the green light to go on the kiddie rides at Six Flags, which had someone doing a victory dance… (Hint: not me)


 Boy, do I have a lumpy dome, or what??

And my poor little boneless, metal plate section at the back :-(  Did you know that the metal pinches my muscles back there a bit, so I can’t lay down with the back of my head pressing directly into the pillow?  True story.  I need to have a cheek facing down or else its ouchy…and sometimes I can hear the plates and mesh clicking, which is all kinds of weird. 


I liked this^ because of the pretty colors.  They’ve given me this image in black and white, but this was the first time I’ve seen it in all of its colorful glory, and it is much more fabulous this way.

Monday, May 25, 2015

The Berkshires

Like a rustic, hiker-friendly Hamptons, the Birkshires are a mountain range in north-west Massachusetts where plenty of folk from NYC, Boston, and elsewhere retreat for some peace and quiet, while still having some classy restaurants and an impressive arts scene.

While I was getting ready for work on Friday, Jack was on his laptop and asked what I thought about staying at a BandB this weekend in the Berkshires-- of course I said YES!

So we had a very spur-of-the-moment Memorial Day weekend trip that included amazing food, a Rhubarb Festival (rhubarb-based chili contest!), state park after state park, hiking on the Appalachian Trail, and a lovely Bed and Breakfast. 









We were so impressed that as soon as we started driving away, we began making plans for what weekend we can return!

Tuesday, May 5, 2015

Visitors

Way out here, we had west coast O'Neill-Price visitors!

First of all, everyone's favorite missionary --Elder Baby Evan--  came home from Argentina! :DDDD

And Baby Evan had never even met his new favorite brother-in-law!  So a trip out east was absolutely required!  And my mom and grandma could not imagine someone in the family going out east who was not them, so we got to have all three visitors!

And, boy, was it a visit-- they wore us out!

We saw a Red Socks game at Fenway Park on Boston Day.


We ate lobsta' at the Barking Crab in Boston.

We went to Silver Sands State Park and walked on the exposed sandbar to Charles Island at low tide.

We saw the Weir Farm National Historic Site, which included a little hike.

We ate loads of Frank Pepe's Pizza in New Haven.

We saw the Yale Glee Club and Camerata perform beautiful music at Woolsey Hall on Yale Campus


We did Family History with the Billion Graves App (super cool!) at the Milford Cemetery and also down at the Manhattan Temple.

We ate lunch at a Manhattan Farmer's Market and saw the Lincoln Center.

We walked around Trinity Church and Wall Street, NYC, and caught a peek of the 9/11 Memorial.

We pretty much did it all.


THANK YOU FOR THE VISIT!

Monday, March 30, 2015

Diabetes!

No more Shake Shack for us!





A few weeks ago, sweet Mr. Jack had some routine blood work done and when he looked at his results online, he could not believe his eyes and made an appointment with his doctor for the very next day.  At that appointment, his doctor made him report to the Emergency Room (a procedure we are all too familiar with in this little family...).


The problem was that his blood sugar was CRAZY high.  Like, unbelievably high.

So lets talk about a little blood sugar measurement called your A1C score.  According to the Mayo Clinic, these are some guidelines:

SCORE
4.5 - 6 = Normal
5.7 - 6.4= Pre-diabetes
7+ = Diabetic

Many people with Diabetes have a treatment goal of getting their score below 7 with medication, diet and exercise.  Also note that this score is measured within one's blood cells and so it is actually an accumulated measurement of your blood sugar levels over the past 3 months or so.  In other words, your A1C score signifies what your average blood sugar levels have been for a long time, unlike doing a finger-prick blood sugar measurement which only shows your blood sugar level at that exact moment.

Armed with this knowledge, guess what my sweetheart's A1C score was on his bloodwork was?  Just take a wild guess.  6.5?  Nope.  7?  Nope.  8?  Get this...SIXTEEN POINT FIVE.  Yes, 16.5.  That's like, off the charts.  His doctor thought it was an error.  Every nurse who kept checking and re-checking each said the same thing, "I have NEVER seen a score that high!"

Leave it to us to break new ground in the medical field...

So Mr. Jack was diagnosed with Type 2 Diabetes.  This is not too surprising because he has a very prevalent family history of this disease.  But what was so strange to me was that we don't even really eat sweets, and we only eat whole grain carbs.  So I was really baffled by how his blood sugar could be so high.  Well, what followed our ER visit were three days full of guilty confessions such as,

"Well, you know how I told you I sometimes eat 2 or 3 oranges in one day... well, its really more like 5 or 6, maybe even 7 oranges in one day, most days a week..."

"Okay, I did stop for a giant stack of pancakes those days I had to wake up early..."

"That bag from Dunkin' Donuts you found in the car was mine, not my nephew's..."

Then there was the time when a nurse asked him if he ate sweets and he stated, "Ice cream is definitely a favorite of mine, and I eat it frequently."

Uhh...We haven't bought ice cream the whole time we've been married!

"Yes, I must admit that when I take Seth to the doctor every week, we stop to get ice cream and usually some other treat, too."

Oh, my.



Since then, Jack has enrolled in a long-term study at Yale where he gets regular checkups with a top endocrinologist.   We feel very fortunate to have gotten a grip on things before he really became ill.  In hindsight (isn't it always that way?) we have noticed some signs that something was not quite right.  Even now, he gets some achy pains inside, and his vision gets a little blurry since his blood sugar levels and blood vessels are changing and adjusting so dramatically- but this time they are changing for the better.



Don't worry, he is doing well and has certainly learned his lesson!  He had a BIG scare when we had to go to the ER for monitoring.  Since then, he has been so incredibly diligent with his diet, and his blood sugar scores have been in a steady fall, and are now in the Healthy zone.

Within a week of our ER trip, we (1) Joined a gym, (2) Went to a yoga(!) class together, and (3) He asked ME if we could do a farm share/CSA this season!  And I thought I would be begging him to pay for a CSA!  Who is this man??  He's great!

Now I am the one who is sneaking sweets, so I don't tempt him!



Thursday, February 19, 2015

Moving On Up

Linds' Improved State of Being:

-- I am no longer wiped out until the next day if I exercise a bit
-- I sleep a normal 8-9 hours per night, instead of 9-11
-- I don't need a nap every day anymore
-- I have felt MUCH more like myself over the past month
-- Ergo, I have been SO BORED lately

So...

I got a new job!


It is perfect.  It is part-time, so I am not too stressed or over-worked, and I get to do Child Advocacy with a wonderful organization that I have respected for many years: CASA (Court-Appointed Special Advocates).  I am so glad to be back in an area of law that I always wanted to be back in- AND at a manageable pace.  And they pay me!  WHOA!

We are very pleased :-)


And that sweet hubby has been chauffeuring me to my office at the courthouse because he is scared of me driving in snowy weather (probably rightly so)-- what a sweetheart!


PLUS, this week we celebrated my Mardi Gras Birthday!  Doctor says to avoid sugar, so instead of baking an ENTIRE cake that I would invariably eat within a couple days, we went to Claire's CornerCopia (my favorite!) and chose a slice from their gorgeous cakes.  They even provided a candle!
Here's to MORE BIRTHDAYS for everyone-- kids in danger, cancer patients, and ME!

Monday, January 5, 2015

Happy Holidays


Happy Holidays to one and all, and many blessings to you in the New Year!

I am feeling well— not quite my normal self yet, and I still get tired easily, but my bald spots are re-populating and I survived a very nauseating encounter with the flu and I’m definitely on the up and up.  Thanks to everyone for your well wishes, especially over the holidays.  It was so fun for us to receive Christmas cards from so many loved ones over our first married Christmas.



NOVEMBER
Early in November, my mom leaked an image of a t-shirt she designed for our family to wear at the Turkey Trot Thanksgiving Day Race in Long Beach, California.  I knew the whole family worshipped our Baby Gwen, so our Thanksgiving running team was to be called Gwennie’s Gobblin’ Gang, but to my amazement, our team shirts had me written all over them…literally.  The text was in our wedding colors, the shirts had a Philly LOVE statue replica spelling out “CURE.”  The shirt itself was gray which, like its pink breast cancer cousin, is the color representing brain cancer awareness.  And then in great big letters it read as follows: Gwennie’s Gobblin’ Gang runs for Brain Cancer Awareness and LINDSEY.




Here's Miss Gwennie herself with her sweatshirt saying "Go Aunt Lindsey!"  What a doll she is!


And Gwennie's Gang spanned the entire US-- from Long Beach, CA, to 35 degree weather in VA, and states in between!





Whoa.  There is something about having your name all over people’s chests –not against their will—that feels…powerful/awkward/humbling.  Seeing the gray-clad runners and walkers really made visible the fact that so many people think of me, pray for me, and love me.  It was an unexpected jolt of support, so THANK YOU to Gwennie’s Gang for making me feel so supported!  Once again, I have the greatest family in the whole world.  And my mom even collected donations for The Breathing Room Foundation in Pennsylvania which gave me a grant while I was receiving radiation.  So great!



December I
You probably heard about our disastrous experience at our home…picture this: a single-family house in New England that is near the ocean, not insulated, and has no fireplace and no working heater, IN WINTER.  Really, really bad.  So we had the great pleasure of moving (I HATE MOVING!!!!) to avoid freezing to death.  But we are really happy with our new place and Mom and Dad even helped us put on the finishing touches because…


December II
Mom and Dad came from California to stay with us for Christmas!  We went to New York City because, according to Clarence, “There is nothing like Christmas in New York!”  We saw the big tree at Rockefeller Center, had a smashing meal at 21 Club while a brass band played carols in the restaurant, and marveled at the bustling shoppers down 5th Avenue—especially inside Tiffany’s and FAO Schwartz.  Because who can resist toys and diamonds in Christmas Eve?



We also popped up to Boston for a day to complete their Eastern tour.  So glad to have some extra Price’s on the Right Coast this year!  Please come back!  And that means you, Evan, when you are back with us in the USA!  We had a little error in calculating the time change, so Evan called me on my iPad during church from Argentina and I basically disturbed every last Sunday Schooler by running around the church trying to get the best internet reception.  Sorry, not sorry.


December III
Since we got married this summer, we have been meaning to go down to Georgia to get me acquainted with more of the Jackson Family.  We wish it had been under happier circumstances, but we made the trip sooner than expected to attend a dear uncle’s funeral.  Our only mistake was driving to Georgia…that is one heck of a long drive…  But the family was so kind to me and I got to meet tons of cousins, aunts, and uncles I never knew I had!  Get this—both of my husband’s parents had FIFTEEN children each born into their families while growing up!  FIFTEEN!!  I could NOT believe this when my sister-in-law told me!  So, yeah, LOTS of cousins!  And we got some real gems from Uncle LeRoy: old family photos that we are restoring and using as we work on putting together Clarence’s complicated and expansive Family History.  Of course we will post them when they are restored!


HAPPY NEW YEAR!

Tuesday, October 28, 2014

Linds Rang The Bell!

ANNOUNCEMENT:  Linds finished radiation and got to move to Connecticut yesterday!


For months now we have 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 generation 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

The bell is loud, but my voice is pretty quiet.  I said something to the effect of, "I started this the day after our honeymoon, which was like the worst thing ever.  But now I can finally move in!"

Yes, I cried when I got on the elevator to leave, but don't ask me about it! :'(

Monday, September 29, 2014

OPEN HOUSES are CANCELLED :-(

Hello to our dear family members and friends!


We have already begun to send out postcards announcing this, but we also wanted to put it here as well--

We must regretfully cancel both of our Open Houses originally scheduled for October.  

With Lindsey's rigorous treatment schedule in Philadelphia, it would be really tricky to travel all the way to California and back without risking missing a day of radiation.

It is also getting increasingly difficult for Lindsey to even make it up to Connecticut, because the radiation is starting to take its toll and she gets tired easily.  Planning the Open Houses was just a little more stress than she wanted to deal with at present.  We are very disappointed to not celebrate with everyone, but we hope you all can understand.  


To our Connecticut loved ones, please plan to come visit us for dinner in the new year!  We would love to have guests once things are settled and Linds is actually living in CT full-time.

And to our California loved ones, we are planning to try to make to to California for Thanksgiving, so when it gets closer to that weekend, please reach out to us and we will try to get together, if possible.


We love you all; thank you for your continued support.  Linds is doing surprisingly well and is nearly half done with her radiation treatments.  If you want to read the latest on her blog, the URL is--

 http://jaydiva.blogspot.com/


XOXO!

Raspberry Rapture

We were so excited to hear that Bishop's Orchard still had raspberries!  We drove up there on Saturday and picked 7 POUNDS of beautiful, dark, sweet raspberries!

And it was a lovely, sunny day.





So I made Jack some berry and yogurt parfaits to put in his lunchbox this week :-)


And I have been experimenting on all the delicious things to do with super ripe raspberries before they go bad.  Here's today's from-scratch accomplishments:


~ Lime and Raspberry Crumble (Gluten free!  Made with coconut flour, oats, and coconut oil!)

~ Whole Wheat Raspberry-Chia Galette 

~ Ginger and Raspberry Scones 

~ Chia Pudding with Honey, Cinnamon, and Fresh Raspberries



All natural, of course!  Made with maple syrup or honey as sweeteners.  And I used differing quantities or coconut flour, garbanzo flour, whole wheat flour, and organic unbleached flour.)


YUM!    Happy end of summer!


P.S.

We saw the GIANT pumpkins at the Durham Fair on Saturday, too!  We saw one over 1,500 pounds!

Thursday, September 11, 2014

A few more of the details...

You may be getting tired of our wedding photos, but I NEVER WILL!

Here are a few more details from our Central Park Family Picnic and Ring Ceremony:


Price family photos outside the Manhattan LDS Temple-



 Mountain of picnic boxes!

Gift bags for our out-of-state guests--


The cutest little processional...

Our guests got to choose a button to wear in support of my issues :)

Central Park Family Ring Ceremony on Cherry Hill-



 The Cake!  One little coconut-lemon meringue cake on top of tiers and tiers of lemon, coconut, and vanilla cupcakes.  Excellent flavors for summer.  We LOVE Magnolia Bakery!