Day 3 - Week One

For just about every medical ailment or disease, there seems to be that one expensive drug that works miracles; the treatment you'd sell your right pinkie for.  For cancer, and keep in mind, I still have so much to learn, it appears the Mercedes of nausea prevention medication is "Emend".  Three, unassuming little capsules, worth around $115 per pill, secured between layers of thin cardboard in a Z-Pak set up.  Once again - God, husband, insurance - thank you. "If you drop an Emend pill on the floor, pick it up, dust it off, and put it in your mouth" said every doctor, nurse and pharmacist I came into contact with on Tuesday.  I promised. "I will put it in my mouth if it falls on the floor".

They also provided me with a steroid, to be taken with the Emend, as well as two additional anti-nausea medications as backup, if needed.  There's OTC digestive remedy recommendations, the greatest has been Pepcid.  This stomach acid is a wee bit mean and mocked my precious TUMS.   Being a reformed Type A, I appreciate the specific details and instructions my medical professionals have provided.

So far everything I was told to expect has happened.  Rosie, flush cheeks.  Fatigue.  Acid reflux.  I'm just barely in my first week but as long as we're on the road to completly obliterating my cancer, that's all that matters. 

If I allow it, I can quickly become overwhelmed just thinking about the long weeks ahead.  The tests.  Waiting for updates and answers.  I know for myself, my mind can race a mile a minute, and it's a battle, especially now, to not permit any negativity to take root.  In my prayer time last night, I was reminded of the following verse:  Philippians 4:8.  Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about such things.

That's not a suggestion.  That's a glorious command rooted in freedom from anxiety as far as I'm concerned.


In addition to God, husband, parents, family - I'm making a list of 5 good things, excellent and praiseworthy things, to meditate on...

1)  Some wonderful women in my life are making sure I have a cleaning person, eyebrows, constant encouragement, hats, medical support and today, a massive Costco chocolate cake.  I had a sliver earlier with some Chai tea and company.  It was  the most delicious, guilt free piece of chocolately goodness I've ever devoured (doctor's orders).
2)  As much as my own vanity dreads the first fistful of hair loss, after years of chemical hair relaxers, aching arms, straightening irons, blow dryers and curling irons, I think I'm actually looking forward to experiencing life as a care-free bald woman with head wear options. 
3)  Months of wax free Sicilian menopause upper lip?  No razor burns or nicks?  Yes, please!
4)  I truly never stopped to appreciate, nor did I have any idea, how much love I've been given in my life until cancer. 
5)  And of course, this little guy (Penguins + Christmas = awesome):

I'm going to continue to strive to think only on whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable-- anything excellent or praiseworthy.

"Live from New York"

I couldn't have been more excited to start treatment this morning. It wasn't like "free pastry" excited, rather, more "let's get in there and fight the good fight" excited. 

Below is a breakdown of the day.  I should note, unless I walk in on the elderly in the facility bathroom (happened at least once a week while at the last hospital - poor old ladies couldn't figure out how to lock the floor to ceiling doors) or something significant takes place, I don't expect to document each trip. I also note that each appointment time is different.  So if you're interested in learning my schedule patterns so you can break in and try to steal my collection of creepy animal statues from HomeGoods, you're out of luck, pal.

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5:30AM - Showered and applied copious amounts of under eye concealer, foundation and other makeup.  Mascara.  Spent an extra 10 minutes on my hair.  Mascara. I take more time getting pretty for my oncologist, just so she can say "You look fantastic!", than I do for my own husband. Mascara.

7:30AM - Arrived at destination with my posse, Lou and Dad.   That HOV lane is mint.  It's wonderful to have you back Brooklyn Battery Tunnel.

8:30AM - Vitals checked. Blood pressure, weight and blood work noted. "I need to take blood from your hand."  BOOO!  ANYWHERE BUT THE HAND!  Fortunately my phlebotomist retrieved my blood like a boss...from the top of my right hand but she did an outstanding job.  Her reasoning for taking blood from my hand?  In case there's an issue with the port and they need to use a vein, to administer chemo, they can use a good vein.  Uh, what happened to the sales pitch from 2 weeks ago that they can take my blood from the port?!  Once again - things they fail to put in the brochure!

8:40 AM - Met with doctors and discussed treatment plan. Now I had lost several pounds over the past two weeks and I brought it up with the doctors. "I read a few articles about cancer and sugar so I haven't been eating much of anything. No white breads, pasta, cake. It's mostly fruit and a little chicken when I do eat". Lou chimed in. "She barely eats".  El Raton!  "If you want a piece of cake, eat a piece of cake. You already have cancer. We don't believe it accelerates its growth at all". My hands are tied. I have to eat a piece of cake. Doctors' orders.

11:00 AM - Two women just passed through the waiting area pushing a cart overflowing with 3rd grade art supplies.  Now I want to make a tissue paper flower with a green pipe cleaner.

Wait!  Back it up.  I almost forgot to tell you about the best part of waking up: 

This morning I was reminded of probably my favorite Bible story, before I even stepped foot out of bed. It was just the "LET ME SEE YOUR WAR FACE" motivation I needed:

Matthew 21:12 - 14 - Jesus entered the temple area and drove out all who were buying and selling there. He overturned the tables of the money changers and the benches of those selling doves. "It is written," he said to them, "'My house will be called a house of prayer,' but you are making it a 'den of robbers. The blind and the lame came to him at the temple, and he healed them.'"

I was further reminded...

1 Corinthians 6:19 - 20- Do you not know that your body is a temple of the Holy Spirit, who is in you, whom you have received from God? You are not your own; you were bought at a price. Therefore honor God with your body."

Jesus had righteous anger. The temple was a place for prayer and healing and people were completely violating the temple. My body's a temple to God's Holy Spirit. Evil, malicious, despicable, vile, loathsome cancer has settled into His temple. See where I'm going here? Jesus, let's flip some tables!

11:20AM - OOH! Random tech just came out. They're mixing my cocktail. I'm "next". We'll see what "next" means.

12:20PM - The chemo needle is in the port!  Weird feeling.  

How lovely is this? Since I'm here through lunch, I can order a "free" sandwich from a limited menu from a DELI next door. A Manhattan deli - not some sloppy mess from a hospital kitchen. And, my companions, although they have to pay, can also order lunch. The hospital takes care of the ordering. Score!

 
They started me with several pre-chemo drugs including Pepcid and Benadryl. 

Why hello IV Benadryl.  Where have you been all my life?

"Butterfly in the sky, I can go twice as high. Take a look. It's in a book. A Reading Rainbow..."

HEY! The Arts and Crafts cart ladies are here! Yes, please I would love to make a paper flower. Thank you for the materials!!  

1:00PM - Preliminary meds over.  Commence Chemo...

 

I admit, the Apocalypse Now bit in the helicopter was what really entered my mind - but that's not at all appropriate.

Let's go Carboplatin <clap, clap, clap clap clap>!! Let's go Carboplatin <clap, clap, clap clap clap> !!

I didn't feel any different or weird.  It was as though I was just chilling in a recliner, with an IV hanging out of the top of my chest while I sipped on apple juice and a strawberry smoothie. 


2:24PM - Time to change the medication

Let's go Taxol <clap, clap, clap clap clap>!! Let's go Taxol <clap, clap, clap clap clap>!!

2:40PM - Flower done. 

3:00PM - First treatment down.  Making my way to the pharmacy for some legitimate drugs to help prevent nausea.  God bless union insurance, man.  If not for coverage, and I say this with all gratitude and humility, between my surgery, radiation, testing and now chemo, we would have had to sell our house.  Thank you husband for your life choices.

5:00PM - Home and joyful.  I'm finally an active player in the fight.  It's empowering.  It's also terrifying - I'm pumping my body with toxic matter which we pray will cure my disease but could potentially open the door to secondary cancers down the road (ironic, no?).  But as God reminded me last week, He's bigger than a pulmonary embolism, He's bigger than cancer and He just wants me to fearlessly trust Him. 

Why Trees? By Guest Blogger, Mom

A Mama’s Thought:

Why Trees?

I can’t remember when I first read Mark 8:23-26, the story of the Blind Man of Bethsaida. Here Mark records when Jesus’ arrived in Bethsaida, the people brought a blind man to Jesus begging Him to heal this man. Now, there is so much going on in these few verses that one can do an entire lesson. What I want to focus on is what the man saw after Jesus first laid hands on him. When Jesus asked “Do you see anything?” the man’s reply was he saw people as walking trees. It was after the second time Jesus laid His hands on this man that he saw perfectly. Why trees? Why did Jesus allow him to first see people as walking trees?

It took “Sandy” and this personal storm we, both individually and as a family, are facing with our Amy, that I think Jesus allowed this blind man to first see people as trees.

After “Sandy” I noticed a number of huge, massive, immobile healthy trees had fallen right out of the ground - root and all. I was surprise just how shallow their roots were under a blanket of grass. This is called ‘Blow-over’, I looked it up.

We are used to seeing tree branches break and fall down after a storm. Or trees split in two due to tree rot or lighting but these were not young or sick trees, and there was no lighting during Sandy. No, these were old, seasoned seemingly healthy trees that fell. Of course, not all trees fell during the storm and I wondered why. The winds during Sandy were the same and yet only certain trees were affected.

We don’t know what kind of trees the blind man first saw as people, but as I looked at these trees that had fallen I was struck with the idea they, seemingly immobile trees, were like Christians who from the outside are well rooted in the word but not in their relationship with Jesus.

I thought of myself and my walk with Him. I have been blessed with the gift of wanting to know more and the hunger to study His word but it’s not until we experience a very personal storm that we see just how true we are to Him.

I have been the man who believed but asked for help for his unbelief and I have been the centurion who knew by Jesus’ command the servant would be healed (Matthew 8:7). In my mind’s eye I have ‘sat’ in the court listening to Satan accusing me of not being faithful and just the thought of asking the Lord why – why is this happening to us, I could hear Him ask me where was I when He set the lines of the earth. (Book of Job)

Jesus did not heal everyone but He did perform miracles. He promised to be with me and either through a message or song or through everyday experiences He has. I have been in the ‘meeting tent’ but I don’t ask Him why. I talk, ask, plead, and pray for our Amy. I know, from past experiences, to listen and see what the Lord has to tell or show me. And He has been faithful to me so far through this journey.

I am a tree bending, swaying in the storm. On any journey we each choose to walk a certain ‘street’ – hope, faith, love, despair, fear, anxious, etc. I am on the street called Miracle Street and until He tells me otherwise this is where I will stay. There are storms on Miracle Street, the winds do blow. It’s how I stand – It’s my willingness to stand firm so that I can grow firmly rooted to Him.

There are other reasons that can cause a tree to be affected during a storm such as root and stem failure and crown twist …there are wonderful lessons going on here. This is how the Lord distracts me from being anxious and fearful. It’s from lessons to be learned through His word from life’s experiences. Our Lord is making His presences known to us, teaching and comforting us. He is very much alive and He is answering me maybe not the way one expects to get an answer to our prayers. It’s His timing and His will. The question He is asking us is “Are you willing to hold tight and believe in Me?”

One thing I am appreciating is that I have ‘today’ and with each today I intend to enjoy my Amy as I continue to ‘grow’ in and with our Lord, Jesus Christ.

Adventures in ICU and the Geriatric 5th Floor

Hospitals can be awful, smelly buildings where no one rests or eats.

After almost 22 hours in the ER, we were told I had a room in ICU.  "ICU?  That's for people with tubes and on life support.  I'm not even on oxygen".  I suppose I had taken the day's events a little lightly.  Up to ICU we went. 

Since I was shuttled around during the day for tests and the procedure, by default I ended up being one of the ER hallway creatures.  As I entered my new home away from home, I let out a grateful "thank you".  I was desperate for a better bed and some quiet.   As I looked around the modest room, I noticed something missing.  "Excuse me.  Where is the bathroom?" I softly asked my ICU nurse.  "Oh, in ICU most patients use a bed pan or a commode.  We can get you a commode". 

Say what now? 

The nurse brought in the commode and placed it near my bed.  I was mortified.  I had 3 large windows in my room facing the nurses station and only a small movable curtain.  Not to mention, whatever happened in that commode, a human being would have to remove it from my room, clean and return the bucket.  I thought for a moment.  "Do you have any strong plastic bags"? I asked.  "Sure, let me see if I can get some for you".  My nurse brought back a small stack of clear patient belongings bags.  I thanked him, got out of bed, took a bag, lifted the commode seat and securely placed a bag in the commode bucket.  "Oh no, that's my job to clean after you" he insisted.  "As long as I'm capable, no one should have to do that" I said.  It ended up working perfectly during my ICU stay.  I'd take care of business, securely seal the bag, replace it and I retained a little dignity.

I was in ICU for a couple of days.  My nurses were fantastic.  On Wednesday, the day before Thanksgiving, Dr. G, the lung specialist, and the head of ICU paid me a friendly visit.  They had put me on the transfer list for another floor the day prior.  Unfortunately the hospital didn't have a non-ICU bed available.  Since I was on the transfer list however, and my vitals were great, they could try and discharge me.  Lou and I were overjoyed.  My friend Yvette, who happens to be a nurse, was up for a visit. Even my day nurse was cheering.

Then my Dr. P walked in.  

We all greeted him with excitement but he wasn't excited at all.  In fact, he appeared a bit concerned.  He wanted my blood pressure and temperature checked.

Blasted!  He knew.  I had a fever the night before.  My friend Karyn came Tuesday night.  She brought me a sesame bagel with veggie cream cheese - it tasted glorious.  Then things started to get hazy.  I remember she gave me a cookie, organized my Ricola in a cup and read me a devotional.  I was fever loopy and don't remember much else. 

Following Dr. P's request, the nurse came in.  My temp was 101.5.  All medical staff quickly turned and exited the room.  Yvette looked at me with sad eyes and said very matter of factly "Honey, you're not going home". 

I had a word with my Savior.  "Jesus, I am tired, I am disappointed.  I am so disappointed.  If it's in my best interests to stay, I am not happy but I'll stay.  Thank You for my care and please heal me."

I heard my day nurse outside of my room speaking with the doctors.  "I'm not giving her the bad news!" she exclaimed.  The doctors shuffled back in.  Dr. P, in a very fatherly tone, firmly stated "I suppose you know I can't let you go home with a fever.  Your blood work is fine - it's the blood clots causing the increase in temperature".  I tried to plead my case but he wouldn't have it.  As the doctors shuffled back out, Dr. G stayed.  He pointed his finger at me from the edge of the bed and said "I'm here early tomorrow morning and I'm starting with you on the 5th floor.  You better not have a fever when I get there. I want you with your family for Thanksgiving".  We smiled and he left.

Soon after another test I was relocated to the 5th floor.  The geriatric floor.  My roommate was an 80-something year old woman who just broke her hip.  I never take pleasure in another person's misery but this was, what I perceived as "a gift".  "She'll be morphined up and she can't get out of bed.  I have a toilet with a door all to myself". 

We'll call her Helen. 

Around 9pm Helen called over to me.  "Ms. in the other bed, can you help me?  I can't call the nurses".  "Sure thing" I responded.  I got up and showed her the button to press to call the nurse.  Someone would be in for her in a moment.  She began to explain that she has a pacemaker and they didn't give her a very important, very specific medication.  "Can you call my daughter?  I'm very concerned" she asked.

Now, I had been in a hospital before where a nurse entered into my records that she gave me a medication that she never did.  I felt bad for Helen and for goodness sake, I can't have this sweet old lady's blood on my hands.

I picked up her phone and asked for the number.  Her phone hadn't been activated. A nursing assistant came in and Helen started to ramble.  "My son's going to beat you up!" she shouted.  Oh gravy.  Helen has dementia.  I turned around and went back to my bed.  Another nurse came in and reassured her that she has more medication at 10pm. Helen tried to con me to use my cell phone.  I lied and told her my husband had it.  God forgive me but I knew if I said yes once, she'd want to call the universe by morning.  Helen was relentless.  "I understand.  You just don't want to help me" she moaned. Nice Grandma guilt Hels but it's not happening.

Did I mentioned the patient in the room next door?  I'm certainly not making fun of the mentally ill, but imagine if you will a large desert cat eating a screaming baby for 15 hours.  Was I an extra in a horror movie? 

Helen liked to party.  Girlfriend was non-stop chatter for the better part of the night.  She was also incredibly gassy.  I begged God "please Lord, don't let me go insane". As frustrated as I felt, I couldn't help but listen to the conversations she was having with herself.  Helen was basically telling her life story in snippets for hours.  She mentioned her children and her old union job and relived conversations with her husband about household duties.  Although my heart broke for her, I was starting to lose it.  "Honey, please I need you to go to sleep" I would gently plead.   I think she finally passed out around 3am after scores of nurses and assistants had to beg her to be silent. 

Morning came and before I knew it Dr. G was at the foot of my bed.  "Your temp was 99 - I'm discharging you!" he cheered.  It took several hours but before long, Lou and I walked out of the hospital and into the car.  The crisp fall air and bright sun on my face never felt so marvelous. 

Now in the entire experience this past week, no matter where we were in that hospital, God kept a steady stream of kind hearted, loving believers in our path.  A great lady who I just adore from my church was at the hospital for a treatment and heard I was there.  Although we missed each other, she managed to give a simple note to a nurse to let me know I'm in her prayers.  It meant the world to me.  We prayed with a couple in the ER who was facing a difficult health crisis.  One of my nurses hadn't been to church in years and was feeling lost.  Her and I had a great time in conversation together. 

So I had to use a commode and my roommate drove me a little batty.  There's always more to these trials of ours than meets the eye.

We have wig!

It was suggested by several folks that I get a leg up on the wig shoppin' sooner rather than later.  I decided to give a local shop a try today, with the help of mom.

 

It's interesting.  My hair is naturally curly (super curly) and I prefer to wear it layered, shoulder length and straight. When introduced to numerous options of wigs today, my eyes immediately dismissed anything resembling shoulder length hair.  I was drawn to short, straight layers.  Simple.  No fuss.  Just slap it on, give it a quick style and boom - done.  I suppose I learned something new about myself.  Deep inside, I want short hair.

 

After countless samples and styles, I decided on a human/synthetic combo that I can wash with Woolite and a watered down conditioner every 11 or so wears.  Hello chemo silver lining - I don't have to do my hair.

 

I still want the "Jan Crouch" though... 

 

Go big or go home baby!

Forget Edna - Just call me Morty.

On October 10th I updated my Facebook status as follows:

Lynchsister is officially changing her name to Edna, a 60 yr old post-menopausal woman who tucks toilet paper in the wrists of her blouse; complains about her bum hip; enjoys her TUMS, cats and is most certainly keeping the footballs that land on her lawn.

Scratch Edna.  I'd like to now be referred to as Morty. 

In my naive understanding of life, 80 year old men named Morty get things like deep vein thrombosis and pulmonary embolism, not 36 year old women. 

Several weeks ago I was diagnosed with deep vein thrombosis and put on Lovenox, an injectible medication taken every 12 hours.   Respect to anyone who has to inject themselves multiple times per day with medication.  With Lovenox, it's not the injection itself that's irritating.  The needle is pre-filled, small and sharp and the medication goes directly into the chubbiness of my lovehandles.  It's the burn that follows that can drive you mad.  Imagine my delight when I was told I could miss 3 doses for the port placement.  It felt like Christmas. 

Pulmonary Embolism. 

The pain doctors tell you to watch for wasn't the pain I experienced at all.  "Shortness of breath like you ran up the street.  If you feel that, you need to get to the ER immediately".  It was the weekend.  I woke up in the morning and felt a little spasm under my rib cage on the left side.  I'd stretch it out and it seemed to go away.  Then it got harder to breathe.  Midway through inhaling I'd hit an invisible wall of pain.  It's ER time.

My primary care physician used to play stick ball with Moses.  We'll call him Dr. P.  He has to be around 80, his pants are almost up to his neck and he still operates his office without use of computers.  I've been his patient for almost 20 years.  I'd take a bullet for that man.  He's probably the most compassionate and knowledgeable physician I've ever known.  I had no idea how revered he was at the local hospital until a pack of specialists mobbed me in the ER.  In no time I had a CT Scan, a Greenfield Filter procedure completed, and an increase in my Lovenox to 100 mgs, 2x's per day.  Thank God my blood work was normal and vitals were perfect. 

My dad came over this morning.  We sat on the couch, holding one anothers hands.  We stared out of the window, just quiet.  My husband was sleeping upstairs.  I was never so grateful to be alive.  As tears of joy poured down my cheeks, I was reminded that above all, God is in control and He chose to spare me this week. 

Matthew 19:26 - But Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”

Quick Update...

Briefly, my chemo had to be pushed back a week due to an ongoing blood clot issue.  Hopefully, this coming Tuesday is IT.

There are things that they just don't put "in the brochure" when you're diagnosed with any disease or ailment.  Like after a surgery - you learn pretty quick that although some pain meds are the bee's knees, if you don't take a Dulcolax or Colace with it, you're in for a week of misery.  Or take my hysterectomy. A few days following my procedure, the left side of my abdomen became freakishly large compared to my right.  Apparently, thanks to the on-line community http://www.hystersisters.com/, I learned this phenomenon was completely normal and referred to as "swelly belly".  Again, not "in the brochure".

Apparently cancer affects patients' blood differently.  For some, cancer causes the blood to thin.  Not for this medical oddity.  Much like my waist size, my blood is thick and has caused a challenge or two which we pray is/are now under control. 

The past few days had its challenges but God put blessings in front of me with each step.  Whether it was a fellow follower of Christ with a word of encouragement, the support of dear loved ones and a team of doctors who communicated and created a plan of action, God's Hands are all over it.

And on this Thanksgiving in particular, with everything medically going haywire in my life, I count myself blessed.  I pray you take some time, regardless of what's going on in your life, and find 3 good things that's happening for you.  It could be (1) You're alive.  (2) You might be alone, but at least you're not in a miserable relationship (3) You have a roof over your head and food in your belly.  Yeah, whatever.  So that's 4.  You don't have to stop at 3.  Keep the list going. 

White Hostess Wonder Bread and Christmas Antipasto

Christmas Antipasto Table

 

If you're not Italian, you simply must find an Italian family, preferably one from a major City, to spend a holiday with.  It's just non-stop laughter and food from the time you walk in until the time you discretely unbutton your pants and roll out of the front door to go home. 

A few hours before the main dinner of lasagna or eggplant parmigiana and roasted meats, you'll find our family huddled around a table of exquisite savory goodies called "antipasto".  A typical antipasto table may offer imported prosciutto and cured meats; fresh buffalo mozzarella, tomato and basil; marinated mushrooms; roasted peppers and artichokes; fresh breads, crackers and cheeses; olives and tapenades.  Everything you need to give your pending food coma a solid foundation.

My Aunt Diane was one of the greatest women who ever lived.  Petite and feisty, she poured her passion for our family into her food.  She was a spectacular cook.  Of all the things she was known for, it's the curiously delicious antipasto featuring white Hostess Wonder Bread, pickles, olives and spray cheese that make Christmas, Christmas.  

We can only speculate where this concoction came from and who started making it.  A 1950's magazine ad for quick entertaining perhaps?  I doubt anyone in Calabria has ever tried it.  It's low brow baby but believe me when I tell you, this is addictive.

Here's the recipe.  You'll need:

1 jar of large pimento stuffed olives
1 jar Vlasic baby dill pickles
1 can of Kraft Easy American spray cheese
1 loaf of fresh white Hostess Wonder Bread
1 sharp knife
1 butter knife
1 rolling pin
Paper towels

1)  Take 1 slice of White Hostess Wonder Bread and remove the crust.
2)  Using the rolling pin, roll the crustless slice of white Hostess Wonder Bread completely flat.
3)  Spray a TBLS or so of the spray cheese on the flat bread and using the butter knife, spread the cheese in an even layer all over the bread.
4)  Remove a dill pickle from the jar and pat dry with a paper towel. 
5)  Place the dry pickle on one side of the flat bread.  We're going for a "jelly roll" here.  Lifting the flat bread from the pickle side, gently start a tight roll of flat bread around the pickle.
6)  Using a sharp knife, cut the roll into slices and serve.
7)  To make an olive roll, replace the pickle and line up about 3 large stuffed olives (pat dry) and follow the above mentioned instructions.

While people lament over Twinkies and Snowballs, and trust me, I'm mourning Hostess Cupcakes myself, the Lynch family's left wondering what on earth will ever replace white Hostess Wonder Bread for Christmas.  My dad's suggesting potato bread.  We'll have to experiment over the next few weeks. 

Side note:  For my NY'ers looking for a replacement for the overly processed Hostess baked goods, try the grown-up versions at Empire Cakes (formerly Lulu Cake Boutique).

You'll Just Be a Little Sore...

The port was successfully, surgically implanted yesterday by an absolutely lovely medical team. It was painless and I remember mostly none of it.  Viva la Fentanyl!

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We arrived around 9:30am for a 10:30am appointment.  I introduced myself to registration, got my fancy white name bracelet and settled into the waiting room.  After sending a few texts, I began meditating on the hymn "Tis so Sweet to Trust in Jesus" for comfort. 

No matter the hospital lounge or waiting room, it takes little time for us to figure out which patient or patient companion was raised by gorillas.  With no regard for the personal space of others, these individuals fling their crap all over the place and bang their chests while making loud noises, believing others will think they're important. I have a hard time ignoring these people, who I allow to so easily distract me.

Yesterday's winner was a combination of bad cell phone ring tones and loud, crass, non-stop phone abuser.  Her inability to form a sentence without the use of four letter words cut through the entire waiting room like a hot knife through butter. 

I can appreciate making a quiet call to let loved ones know that a patient they care about is in recovery, and it was obvious she and her male companion were waiting for a friend.  Peaches, as I now lovingly refer to her, wasn't making concerned calls however.  Peaches was setting up her weekend plans with half of Brooklyn.  "I'm gonna go to Burger King and then I'll go to the store for a 5 finger discount." she boasted.  "I said a 5 finger discount.  WHAT?  NOOOO.  FIIIIVE. FINGER. DISCOUNT. Do you know what a 5 finger discount is?!" she cackled. 

Excellent.  Not only was Peaches obnoxious, she just announced to 50 strangers that she's a thief. 

I just wanted to ask her to please keep it down.  I wanted to tell her Jesus loved her while banging her head into a wall.  Lou commanded me, like he does the cats, to remain calm.  "Easy.  Eeeeeeasyyyy!".   My meditation time was messed with, my blood pressure was rising.  God forgive me for allowing this individual to fill me with rage and take my sight off of You.  Clearly I need some discipline in this area of my life.

Back to the port.  The radiologist told me I might feel "a little sore".  I love when surgeons use that incredibly vague and relative term.  "You can use regular Tylenol if you experience discomfort or if you have Percocet, take that".  OK.  So let me see if I understand your recommendation, Dr.  My pain management options are Tylenol, an OTC nugget of worthless chalk or Percocet, a cocktail of Tylenol and a highly addictive opiate that people sell on the street in back alleys.  Hey Doc.  I plan to roast marshmallows over a raging campfire.  Should I put my marshmallows on the end of a toothpick or a 3 foot tree branch? 

It's very tender, very sore and a lot inconvenient right now, but I know the benefits of having chemo administered through the port.  I did get to miss 3 Lovenox shots for it so that's a plus and Lou surprised me with a dark chocolate Dove bar from the gift shop (so much better than flowers).

Feeling Worn, Feeling Awesome

Psalm 139:2 - You know when I sit and when I rise; you perceive my thoughts from afar.

It took me more than a few days to share my raw, bare feelings with God after being diagnosed with cancer last November.  My Bible and the outstanding books "The Purpose Driven Life" and "Emotionally Healthy Spirituality" were open at all times in my lap as I desperately searched for comfort and answers.  It felt as though every truth, every reassurance I had known, was in a moment absent from my memory. 

And the spiritual attacks.  Oh the spiritual attacks seemed almost endless and overwhelming.   1 Peter 5:8 - Be self-controlled and alert. Your enemy the devil prowls around like a roaring lion looking for someone to devour.  I'll take some time to cover my experience and victory concerning spiritual warfare in another entry.

My prayers were initially coated with a gallon of maple syrup and Sunday school catch phrases like "Well God I guess if You bring me to it, You'll see me through it".  As I delved deeper into my Bible and book study, there was one truth that came to life, and it was so blatantly obvious, I couldn't believe it only became evident at that moment.  Just about every major player in the Bible cried out to God in desperation.  Not only did they cry out to Him, they were flat out open with their emotions and concerns.  Why wasn't this obvious to me before?  David cried out to God, and he had more than his share of bad days; Psalm 55:17 - Evening, morning and noon I cry out in distress, and he hears my voice.  Martha, Lazarus' sister, looked Jesus in the face - in His face - following the death of her brother and said "if You were here my brother wouldn't have died" (John 11:21). If I know Martha like I think I know Martha, I don't think she said it tenderly either (for those who aren't familiar with the story, Martha's sister Mary also let Jesus know how she felt.  In the end, 4 days after Lazarus' death, Jesus raised Lazarus from the dead). 

Even though He already knows it, God wants to hear us tell Him everything.  Every raw, bitter, angry thought.  Every crippling fear.  1 Peter 5:7 - Cast all your anxiety on Him because He cares for you. 

The song "Worn" by Tenth Avenue North today sums up a majority of my thoughts at that time... 

And it was at that moment, immediately after I cried out everything to God that was buried deep within my soul, that my pain was replaced with pure, perfect peace.  Philippians 4:7 - And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

He truly gave me peace that passes all understanding - words cannot describe the sweet relief.  And as I sat, feeling as though my mind and soul were being cleansed with grace and mercy and love, I was gently reminded of what I needed to do next...

Philippians 4:6 - Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God.

1 Thessalonians 5:16-18 - Rejoice always, pray without ceasing, in everything give thanks, for this is the will of God in Christ Jesus for you."

And so I started to rejoice, and I started to praise Him.  Did I say "Hey God, thanks for the cancer"? No.  I just praised Him.  I thanked Him for His promises, many in my personal favorite book of Romans.   Romans 8:28 - And we know that in all things God works for the good of those who love him, who have been called according to his purpose. 

Through my own time in prayer, hymns and praise songs that He put on my heart, I just kept on praising.  In praising Him, I've learned to trust Him in ways I never have - now, He has my everything. 

I went through a similar spiritual struggle when I received my second diagnosis in October.  This time, however, I was a little more diligent and recognized my need to start praising Him from the start.  I'm a 36 year old woman who never had children; lost her fertility to cancer; just had to call off our search for a baby through adoption (after having just finished mounds of paperwork and our home study), spent 2012 fighting cancer, now requires twice daily Lovenox shots for blood clots and I have peace and joy in my heart from the time I get out of bed to the time I put my head down again to rest.  It's nothing in my own strength. 

I first heard the song "Awesome" by Pastor Charles Jenkins & Fellowship Chicago on XM's Praise channel almost immediately after my second diagnosis.  "Worn" is a fine place to visit when we're in the pit, but we can't dwell there.  We need to dwell in "Awesome". 

 

Do I have moments of weeping?  Do I have my moments of fear?  You bet, I'm only human.  In our trials, we need to remain vigilant to lay our burdens at the feet of the Lord and leave them there. 

I Wish I Could Unsee That

During my day trip to Sloan Kettering yesterday (and yes, I did decide to treat there - chemo starts next week) I visited with the kind nurses in radiology at the main hospital.  Their job?  To provide an informative demonstration on the surgical placement and benefits of using a port to deliver chemo treatment. A little nick in the neck, a small incision above the right breast and it's in.  They had a large display with prosthetic skin and a sample port that they used for reference. 

But wait, there's more! 

We have an opening this Friday and you really want to get in. 

Patients tell us they wish they had

the port placed before they started treatment. 

Was this a presentation for a medical device
or for a time share in Boca? 
 

I'm sold, ladies!  Where do I sign?

They don't knock you out completely for the procedure.  I don't like that.  I'm a fan of Propofol (or as Dad and I refer to it, "Michael Jackson juice").  At the risk of sounding like I have "a problem", Propofol is awesome!  My friends who are terrified of colonoscopies and endoscopies, let me reassure you - Propofol is the greatest nap ever.

Nope.  This will be done in the same manner as my biopsy.  They put you in a little twilight so you kind of know where you are but have little recollection the next day.  They use Lidocaine to deaden the nerves topically.  "Most patients sleep right through it". 

When I had my biopsy at another hospital, the nurses couldn't find a vein in my arm or top of my hands so they used the vein at the bottom of my thumb - that's OK to cringe, I certainly did. Hospitals really need a phlebotomist from Quest Diagnostics in these surgical suites; those experts can find a vein in any arm.  To continue - they used the Lidocaine as well.  My biopsy was a little deep and if I didn't know any better, I would have thought the needle started out on the surface of my skin but ended up in China.  "Ouch.  I felt that"

Back to the port.  The idea itself is fantastic.  A small plastic device is placed under your skin and into a vein so blood samples can be more easily drawn and chemo effectively delivered.  Unfortunately, showing a patient like me the actual device is never a good idea. It's the size of a quarter but by the time I got home, in my head, it was the size of a truck tire.

Here it is: 

Oh and I got a prescription for a "full cranial prosthesis".  That's insurance speak for "a wig". 

And in case you were wondering, I asked the doctors not to tell me if they put a stage and grade on this cancer.  I'm comfortable referring to this as "the recurrence".  Knowing isn't going to change the fact that my hope is in God for His will for my life.

Some Very Random Notes - Just 'Cause

1)  I'm a Jesus freak.  I won't smack you in the mouth with a Bible, but be prepared for some references to my Savior in this blog.

2)  I'm completely imperfect.  I've made mistakes, I've sinned, I've wronged, I've been wronged. I forgive and ask for forgiveness.

3)  Members of my family and I have Lynch Syndrome: http://www.mayoclinic.com/health/lynch-syndrome/DS00669

4)  I was diagnosed with Stage II, Grade II Endometrial Cancer and had a total hysterectomy in May, 2012; finished radiation therapy in August, 2012 and found a recurrence by the grace of God in October, 2012.  Whatever the outcome, God is in control.

5)  I've been married 12 years to an incredible man.  A good marriage doesn't come out of a box - it takes hard work and dedication, communication, forgiveness and unconditional love.

6)  We don't have kids.  We have cats.  God has given us the grace to be content with where we are.

7) I don't believe it's God's will for everyone to marry, have kids, buy a house and die in a nursing home.  God's will is an amazing, life transforming adventure. 

8)  There's no judgment here. 

9)  I love cake.  Frosting's my favorite.

10) I believe as patients we need to be in charge of our treatment, question everything and seek second and third opinions. 

11)  You didn't give me cancer and there's no need to be "sorry".  If you want to encourage me, talk to me like we're huddled on a football field, preparing for a play.

God Bless My Own Stupidity

Romans 5:3-4 - Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.

About a week or so after returning to work near the end of August, I was asked to travel about 3.5 hrs from home for several days to work on a project.  Having missed my work family terribly during my time out on disability, I jumped at the opportunity. 

It had only been several months since I had my hysterectomy (laparoscopic), and I should have reminded myself to take it easy.  I should have asked people to help me with my luggage, but I didn't.  I threw 80 lbs of luggage in and out of my car 4 times and dragged it twice across a huge, unforgiving, pothole laden parking lot.

At the same time, I was back to working out, desperate and committed to shedding the fat suit I'd only half heartedly tried to combat before.  I certainly wasn't training for a Tough Mudder, but I was "lady jogging" up a 7 incline on the treadmill at least 5 days a week.

Then the pain started.  The pain on my right side felt as though it was under an incision.  The pain started out small.

Another work trip, a 3 hr drive from home, was scheduled.  This time, I packed a little smarter and in smaller cases, and asked the hotel staff for help. 

The pain was still there, and now getting a little worse.  I had myself convinced this was the start of a small hernia.

I saw my internist, who had only just written a letter to our adoption agency to report I was healthy.  He disagreed with Dr. Lynch Sister, MD's personal hernia diagnosis.  Based on the information I gave him, he felt I was simply overdoing it, probably overstretched an abdominal muscle and just needed to chill.  No hernia.

The next day I saw my radiation oncologist for a follow up and asked him and his resident about my side.  I reviewed my activities and prior luggage stupidity.  "Are you training for a marathon?" they asked. "No Doc".   "Then take it easy, you're overdoing it.  You're doing great.  See you in April".  I thanked them for the letter they sent to or adoption agency on or behalf.

A few days later I found myself in Manhattan, lugging my laptop a total of 20 blocks during the day.  Total moron.

Within a few more days, the pain started to laugh at my Advil and hot compresses - I hit my limit.  I  called my gynecologist oncologist and spoke with her amazing nurse practitioner (NP). "Get in here today" she commanded.

Blood was drawn and I was sent for a CT scan.  By the end of the day, our NP came back out to see us in a small alcove by the elevators.  My husband, my ever patient care taker, whispered "It can't be that bad - she's seeing us by the elevator". 

My NP was beside herself.  Her eyes intensly scanned the piece of paper in her hands as she spoke.  "We didn't expect this.  This is not typical.  There may be evidence of cancer.  I have no reason to think you can't do chemo, maybe even hormones"  Everything became a blur.  I excused myself and stepped into the ladies room.  I needed a few minutes to "woman up" and suck in every tear, every blood curdling scream that was dying to come out. 

I don't know what my husband said.  I don't much remember what my NP said.  But I remember my immediate 3 thoughts:

1)  God, how did this happen so fast?

2)  Jesus wasn't cremated.  I don't want to be cremated.

3)  I don't know how to draw eyebrows.

"Can you come in tomorrow for a PET Scan?".  They know me - name the time and place and I'll be where ever you need me.

I had the PET Scan the next day.  More blood was drawn.  My gyn tumor markers were elevated and a biopsy confirmed cancer.  Because of Hurricane Sandy, we had to wait an additional week to rule out the possibility that it might be a "new" cancer.  It's not - it's a gynecological cancer and the cells are the same as the cells from the lining of my uterus when I had my hysterectomy.  The reproductive system is an open system and it only takes one rogue cell to bring on the drama.   

I'm not scheduled to see my radiation oncologist for another 6 months.  I was to start quarterly PaP smears this month, which would have shown NED (no evidence of disease) - the PET Scan didn't show evidence of cancer there.  The pain on my right side that brought me to the doctor in the first place?  Pretty much gone.  I don't know what the outcome of this situation will be, but God does.  I have the promise of glorious eternal life if I die because the Bible tells me if I believe in my heart and confess with my mouth that Jesus is Lord, I'm saved and I love my Savior (I believe in the Triune God [Trinity] - one God, three distinct persons - the Father, the Son, the Holy Spirit).  For now, God made sure my buns got to the doctor's office and this hot mess was discovered.

So far, two major NY hospitals have recommended chemo.  I'm eager to see a specialist tomorrow at Sloan Kettering for their opinion.  Another day, another waiting room. I'm ready.

Saturday, June 16, 2012 - My Dad & Me

Romans 8:28 - And we know that all things work together for good to them that love God, to them who are the called according to His purpose.


Dad was 42 when he was first diagnosed with colon cancer. Although he required major surgery, thankfully it was caught “in time”.

For the past 22 years since his diagnosis, Dad’s been diligent about his annual cancer screenings. He exercises and eats right daily. But about 18 months ago we were told “They found it early, but the colon cancer is back. I feel I need to go to Manhattan this time around for surgery.”

After learning of Dad’s medical and family history, his surgeon referred him to a genetic doctor at the same hospital he had his surgery -Weill-Cornell Medical Center in Manhattan. Dad met with the genetic doctor, blood was drawn and 30 days later we learned that Dad tested positive for a genetic mutation called Lynch Syndrome. Lynch increases a person’s risk of colon, endometrial, ovarian and other cancers, often at an earlier age than the general population.


“Coincidentally”, the genetic doctor was in the middle of studying families with Lynch Syndrome and I took the ridiculously expensive test for free. 30 days later, as Dad and I sat in a sterile exam room, we learned that at 35, I too tested positive for Lynch Syndrome (loved ones would later learn their results, and I’ll leave it them to comment, if they wish). We spent the next few hours in Chinatown, eating Dim Sum and reviewing all of the medical exams we would need for life on the ride home. Dad and I were now Lynch buds for life, yo.


Women with Lynch Syndrome should start testing for endometrial cancer at 35 and have a hysterectomy by 40. I was 35- let’s do this. My gynecologist received a copy of my Lynch report, met with Lou and me and “reassured us” not to worry since HE didn’t think there was urgency for biopsies just yet. Say what now? “Endometrial biopsies hurt” he said. “Uh, Doc, doesn’t chemo hurt?” I asked. “Let’s get a couple of kids out of you and you’ll have a hysterectomy at 40”. I was not feeling the warm and fuzzies. Not long after that meeting, I had a pelvic x-ray that showed a “fibroid tumor”. Again I met with Joe Quack, MD. “Doc, it’s an x-ray and I have Lynch Syndrome. How do you know it’s just a fibroid?”. “Amy, it’s JUST a fibroid”. I couldn’t make these conversations up if I tried. I'll end sharing my experiences with that office here.



Being my father’s daughter, I prayed and researched. God led me to a new doctor who took my records and concerns seriously. I was quickly scheduled for a D&C and two weeks later I received “the call” - I had Stage 1A Endometrial Cancer.


I found an oncologist/gynecologist in Manhattan and on May 3rd, I kissed my lady business goodbye. Since proper cancer staging really can’t occur until the organs are removed, my final diagnosis was Stage II, Grade 2 Endometrial Cancer. Thank God my lymph nodes were clear and as of yesterday, I’m 5 days into 25 preventive external pelvic radiation treatments. Whatever happens, God's in control and His Word promises He'll never leave me.


~


As I struggled to come out of anesthesia in recovery, it was Dad who I saw first, standing at my feet. It was Dad who was with me during my Lynch diagnosis, Dad who sat with Lou to comfort him during two D&C’s, Dad who calls to talk to me during my now daily 2 hr drive into midtown for treatment and it’s my Dad who has lived through and understands the unpredictable world of cancer. Dad, I thank you for your example, suffering, love and support. Thank you for making sure I put my big girl pants on and do everything possible to preserve my health.


Of course, second to my merciful, loving Savior who showers me with His peace, grace and joy, my husband has been my rock and our mothers have loving, supportive roles in this ongoing story. Those are stories for another day. This note belongs to Dad.



PS - I’m not in the business of smearing a doctor, but I will do everything I can to make sure women get the proper medical care and respect they deserve. While I won’t mention his name, I’ll just say this - if you go to a male gynecologist with offices in Bay Ridge and on Richmond Avenue in the 10314 zip code who listens to rock music while performing Pap smears and does plastic surgery and Botox on the side, I highly recommend you get a copy of your records and run like the wind, my sisters. Message me if you have any questions.