Another Day under the Mask of a Ray

Hi all Susie took a day of rest yesterday. She had an early morning date with Ray and he wore her out so she rested. But not until she got these cute new slippers through a “runner”.

And hopefully she was able to take her meds with a sip of this as delivered by a “runner” on Sunday evening.

Just a little glimpse into Susie’s dates with Ray. 

Susie says she is now Xena The Princess Warrior. The hospital staff are all treating her like royalty and taking great care of her every need. 

Here are her latest words:

Everyone wants to help me.  Letting my dog come in????  Early morning date with Ray clears me for rest time complete with my new slippers. Thank you all of my sisters/family for the cards. I just opened the ones my early morning runner delivered. It took cancer for me to know I was surrounded by angels. Thank You. I only wish I could write everyone back. 

My Oncology nurse delivered my favorite. This is the first time ever that I ate one in small bites. Normally, I could eat 2 packs before I got in the car in the grocery parking lot!

I have been Queen of the Week - the hospital cannot do enough. Love and Joy surrounds Parkwest hospital especially with the virus swirling around outside!  

Susie, you deserve to be Queen of the Week. I just wish I could tell you tomorrow that this was an April Fools joke!  Since I can’t we’re just gonna love you through it with all the joy we can!  I love ya lots!  Sherry

Mental Health Day for Susie

Let’s face it. While we are all sharing in this beautiful story it’s not all unicorns and rainbows. Susie told me when her boys were young and had a difficult time with things at school, she would tell them
they could take a mental health day.

Susie is taking a mental health day today and has certainly earned it. She is turning off her phone to rest. She is so thankful for all of your cards, texts, messages in many ways, runners help and your love. So today I’m going to share how Susie found Sisters on the Fly (SOTF) and a bit of her adventures.  Enjoy the read, Sherry

Two years before planning to retire I decided to research women’s travel groups because my husband only likes to travel if it includes shooting something.  I found several groups on the internet but the one that really peaked my interest was Sisters on the Fly.  Their site included a video that said “Making Women into Girls” and that sounded like fun.  Many of the events are camping events.  They have badges and all!

Fast forward to 2016 when I became Sister #7173 on May 12.  Keep in mind that I had never camped in my life!

My first event was in June 2016 to Fireflies at Elkmont in the GSMNP. This was dry camping with no water or electricity. Hey that was no problem because I could do this. I went to the attic and pulled out the tent that my boys had used for boy scouts. Here is my first “rig”

I get there and have my tent all set up with air mattress and luggaloo (5 Gallon bucket with toilet seat and lid).  There are bears in those mountains, I was not going out at night!  I soon met the sisters beside me in their shiny silver trailers. They were putting out solar lights between them and told me they were lighting up Bambi Row. I said Bambi Row! Are we in Disney World?  The sister kindly explained that Bambi was the model of their trailers and they are Airstreams.  I had no idea what an Airstream was. They kindly invited me to join them for breakfast the next morning. 

I made it through my very first night of camping!  It was a little eventful with the air going out of my mattress. Have you ever squatted to sit on a 5 gallon bucket?  It’s pretty low and when you have bad knees you need a little traction to stand back up. As I stood back up, the bucket turned over spilling the contents all inside my tent and there I was rolling around in pee. That didn’t scare me away and I persisted. 

On Saturday we had a red, white and blue dress up party. I went to Dollar Tree and donned my finest dress up I could acquire. I really didn’t  know what to expect and I had no idea that these sisters would be wearing full regalia of petticoats, cowgirl hats and boots!

I survived the trip and went home to tell my husband and boys, “ I am going to buy a travel trailer,”. They questioned my decision and sanity but completely supported me.  My boys said, “you don’t have a tow hitch” and I said then I’ll get one. Any of my friends I told this to thought I was a bit crazy too. Regardless here is my 2nd Rig (Whitewater Retro) that I rolled into Elkmont with the next June for the fireflies event.  I had to use my husbands vehicle which suffered a few injuries along the way like when I knocked off one of the mirrors. 

And notice that I upped my game on the dress up party for the 2nd year too. 

I was blessed (and continue to be) with a group of sister angels who walked along side me and coached me on how to do things. There was a time one angel’s husband had to explain to me as I was ready to pull out that the coupler is supposed to go down onto the ball and lock on to tow. No one had ever told me that.  Here are pics of many of those angels....

That pretty blue and white  trailer was just too big for me so here is my final rig. Meet Scout. Scout is for sale now. Scout tows right down the road behind me and the Hoe (Tahoe) and I can't even see him back there. I’ve had to learn a few more things about towing like last year when leaving Elkmont a sister ran out to as I was pulling out to head home. She shouted “hey wait”, I didn’t remember to take the pin out that allows the tires to roll and was just dragging the tires!

The joy about SOTF is that we all lift up and encourage each other. I am a behind the scenes person but I love to pitch in and help with a good weekend party. I knew I would never be a Route 66 girl and travel cross country but I’m a great weekend camper and I can even give a little advice about camping and trailers now.   The things I have received from being a sister you cannot get on Netflix or buy from any store. You can’t get a quilt delivered and signed buy many of your sister family. We have a common bond that many of us have been through similar things. 

This is Sherry and I just want to share a few pics of the joy Susie has brought us in our friendship with her. 

Susie has had such a fun time coordinating a fun cocktail with the assistance of Bre Davis at our events such as a Lemondrop Martini, Santatinis, Margaritas and the fun entertainment of Little Ruthie and the Shot Sisters featuring Ruth Fostmeier, Donna Whaley and Penny Manning.

We sure love you Susie!

Happy Mental Health Day. Rest up!

Taking a Chance

Today my runner brought a GREAT surprise!

As I was relaxing I looked up and my runner who was off for the day came walking through the door with my DOG!  He got approval from hospital administration.   This makes a great day!  Thank you neighbor!

This is my dog Chance!

The story that began 3/18/2020 for Susie Sullivan

Hi all, this is Sherry Rich.  It is my great pleasure to document Susie’s story as she has shared with me.  Susie is a special friend to many of us and I am humbly honored to share this time and her thoughts with you.  I hope as you read you will read it hearing Susie’s happy voice and dry sense of humor. I cried and I laughed with her. This is so you can have the details and spare Susie from telling the story repeatedly. As a cancer survivor I know that every time you tell your story you relive it.  Susie has very limited WiFi in the hospital and can do little more than text or receive email but cannot send email. I am happy to be her historian. She deserves much more than a secretary!

If you want to send Susie a card her address is:

1724 Duncan Woods Ln

Knoxville, TN 37919

Thank you for your patience as Susie and I worked to compile her life over the past week. The comments you see in blue are Susie’s actual words. I chose blue because that is her favorite color. 

I will enter a daily post to keep you updated. 

Susie’s camper is for sale so please share the info with anyone who needs a great little Tab. Please have them contact Donna Whaley or Penny Manning who are the Vanna Whites offering this. 

To me, Susie has been a great friend, my behind the scenes I’m gonna do something special, fun cocktail, entertainment planning, many times to my surprise event helper. She never wanted any recognition, reimbursement or credit for anything she has done. As many of you know At our SOTF (Sister’s on The Fly) events I always called her Our Unofficial, Unofficial Tennessee Bartender. I love you Sus and thank you for allowing me to serve you now.

Your love and care for Susie is greatly appreciated especially during this unexpected and shocking time.

LUCID LOCKDOWN

SUSIE'S STORY 

I am a warrior!  I have moments of sadness but am really in a good place. Yes, I am mad and angry but so far this has been the worst and strangely best week of my life. I am given a new gift every day. God didn’t give me the staircase to climb but instead one step each day. 

My husband John and I have been married 39 years. We have two great sons, Frank and Jack who are both full time single dads.  I could not be prouder of the path they have chosen to walk. Being a single parent is a tough road and women do it all the time. I have noticed that men do not have the village or sisterhood we have. One of my prayers is they find the love and support we take for granted as women. 

I’m driving my bus today so come on aboard, sit down in the back and buckle up. 

Jesus will be taking the wheel but not today. I’ll let you know when I slide over and give it to him. 

The last week of February in this year, I started PT for neck, shoulder and pain. 

Wednesday, March 18, 2020

This morning I got out of bed and right there beside the bed lost all bladder control with no warning. Needless to say there, I left what seemed like a gallon of pee right on the carpet!  I stumbled into the bathroom noticing balance issues.

My dear son Frank drove me to my 9am hair appointment and I walked in and back out when finished. Frank told me he would feel much better if he took me to the ER just to check things out. I walked into the observation room.  Based on symptoms, the doctor ordered an MRI. The doctor came back in and was visibly shaken. He tells me he has bad news to which I reply, “I know I need a new vertebra.”  The doctor then says no Susie, I have really bad news.  I quickly reply, “OK, I need 2 vertebrae?”  This sweet doctor then says Susie, do you want to read this?  He was referring to the MRI report in his hand. Then he said Susie, you have METASTATIC CANCER!  My response to him was “ this must be terribly hard on you having to tell me this.”  He then asked, why are you talking about me?  This is about you!  

Later that night, I finally got placed in a room. 

Thursday, March 19, 2020

This morning, Frank came in bringing a cooler with Old Charter, Waterford crystal glasses, ice and snacks. He said don’t worry mom, I’ll keep you stocked. For the next hour, we had the most wonderful time between the two of us.  John and Jack were able to be here today too. 

Later in the morning, Frank asked who my doctor was. I told him I had not been assigned one yet. He stepped out of the room and said he would be right back. About 10 minutes after his return, a doctor walked in who is married to a gal that my other son Jack took to the senior prom. He told me, with your permission Mrs. Sullivan I am going to be your doctor while you’re here and I have advised all of the staff that I will be taking care of you. (God thing). His lovely wife is an Oncologist who could be a resource if needed. 

Today I thought I was going to have a needle lung biopsy where they stick a needle through your back into the lung. This was to help determine the originating site of this aggressive cancer. When they got me in the room, I was very nervous.   I told the nurse, “ Look, I have held everyone up for the last two days so I need someone to hold me up today. The nurse said Mrs. Sullivan, you are in a surgery room. We have drugs to give you so it will be OK. When I woke up I was in my regular room. 

Friday, March 20, 2020 - Lucid Lockdown begins!

Frank came in to see me this morning and brought some supplies. After all, I only came with my purse. This gal does not wear hospital gowns or use hospital blankets and I need some product.  

After a couple of hours, Frank got run out and hospital lockdown for COVID-19 began. 

Today I was transported down the street by ambulance to the cancer center for mask molding and my first date with Ray. This was a 4 hour trip.  The ambulance drivers and I sat in the waiting area together for 2 hours between masking and treatment. I taught them how to play Heads Up with the App on my phone and we had a really fun time. I am to have 10 days of daily radiation treatments.  This will hopefully slow the cancer that is growing like kudzu. 

When treatment time came, I was not at all prepared for what came next. They took me to the treatment room, laid me on my back then placed my mask over my face. Then they proceeded to screw me to the table very tightly with the mask. They radiate my head for about 12 minutes then loosen the mask a small amount and radiate my chest. 

Back in my room now I couldn’t have visitors so I had to get a network quickly. I need things!

Saturday, March 21, 2020

No radiation on weekends. Today I am reminded of my dad and one of my brothers. They both died of lung cancer (non small cell, stage 4) about 10 years ago. The week my brother died my dad fell on the golf course. His friends took him to the ER where he learned that he too had the same cancer as my brother. Neither ever smoked. 

After their death, I have had the pleasure of caring for and being the Healthcare POA for my sweet mother who lives in assisted living in Knoxville. She did not know of my diagnosis yet which is why I kept things quiet. There were several others I wanted to personally share with myself but could only handle speaking with one or two each day. 

Sunday, March 22, 2020

Today I learned how to make a playlist of music!  I also have been processing what has been dealt to me and absorbing all that has happened since Wednesday.

Every year that I worked and now continuing into my retirement, I would buy myself a pair of nice earrings. I would put them in layaway and pay on them then get them out for Christmas. 

I am reminded of the 3.5 years that Frank and Weston lived with us. During this time, Frank obtained his Undergraduate and Masters Degrees from the Citadel. He has recently entered into real estate. I am so proud of Frank and Jack both. 

With all of the COVID-19 pandemic lockdown I can have no visitors and my family cannot bring me anything.  No volunteers to bring mail to rooms. I have established an inside supply chain. 3rd world living. My radiation face mask did not take my wrinkles out!

Monday, March 23, 2020

Today I interviewed the Hospice coordinator and made my care plan for after radiation.  A former neighbor started the Caris Hospice company . (God thing) I always told them if I ever needed Hospice I would use them thinking it might be for my parents. 

At date #2 with Ray, I learned that I can listen to music while he is doing his job. I know how many songs should play from start to finish. 

Tuesday, March 24, 2020

I have a secret “Underground Railroad” who sneaks things in here to me.  Cards to my house are the best gift. My hospital window is filling up. One of my runners is my neighbor (ER doc), he delivers before his shift.  (God thing)

Tonight is the last happy hour. Bummer. Esophagus will be toast in the next 48 hours but right now I'm finishing up my happy hour.  Team Susie takes good care of me here. My floor staff has delivered ice every day at 5 and they’re actually surprised to have a strong sister with Waterford crystal glasses and bourbon. I am a warrior but, come on. 

No one keeps a sister down.  Tomorrow is date #4 with Ray. My throat is now not happy but I had a good cocktail hour. Tomorrow I'm switching to shots of Aloe Vera but hope I can have a drink in a few weeks. From last Wednesday until now, my life did a 180. 

Wednesday, March 25, 2020

Steroids sure are a rush. My mouth and mind go 10000 miles a minute.  Date #3 with Ray today. 

Lockdown has given me freedom to do so many things. These times have actually been some of my most precious moments. Pretty amazing considering I now have a glow in the dark DNR bracelet. My son is bringing me my pearl/diamond earrings that were in layaway.  I will be sporting those babies today. I am in a bubble. Cannot get or buy anything except through my underground. Seriously, a girl needs product. So mail to my house and that being delivered is Christmas! My runners are employees but their bags have to be small. The barricade police are going to ban stuff soon.  My chemo caps I think are on the Friday run. Flowers are banned but last night some were smuggled in a medical supply box. 

Honestly I have the gift of uninterrupted time.  No crying family/friends. 

In the mornings, my coffee usually comes lukewarm to cold. Today, I told the nurse “This dying lady needs hot coffee”. 3 minutes later she hooked me up and it’s a great day!

My cute radiologist is making me trade my Charter for Aloe Vera shots today. CRAP!

(Charter/aloe picture here)

My doctor came in a day or so ago to introduce me to the doctor taking over my care for a few days.  Very nice doctor. Today when he came in he said “Mrs. Sullivan you don’t recognize me do you”. To which I replied no.  He proceeded to tell me that he had bought my house 14 years ago. He sat down and told me everything they had done to the house. This brought me great joy. (God thing) 

When it was time for him to leave, I told him I had some homework for him. He asked what it was. I asked him to draw a picture of a stick girl. Then to mark the spots where my cancer is. 

Thursday, March 26, 2020

Sure enough when the sweet doctor came in he had done his homework. I cherish this picture and keep it by my bed. I look at it every night. The x are the places where the cancer it and the marks on my forehead are the stars in my head right now 🙃. Notice the earrings!

My underground railway runners. My flowers now have been banned but cards to my house now make their way to me. I love my network.

Look what my runner brought me today!  A sister quilt. It is gorgeous. I am going to shed a tear darn it but some things really really touch me and this gift is precious. 

Angels - thank you!

It was hard to take a selfie but I managed. 

Friday, March 27, 2020

Today, I am finishing up paperwork and almost have the bow tied on my “details” package. Gotta love lockdown. I have always loved a challenge. I guess God knew to hand it to me. 

Look who snuck into the ambulance with paperwork for me to sign! That’s Frank. My drivers are so kind. They know what I face and are so helpful to assist my network to help me get things done that I want to. Have I told you how proud I am of my boys? My runner offered to sneak my puppy in with a supply box but I had to put my foot down and say no.

I am pissed the dealer will not let me turn in any cards. I never was good at poker. Guess that is pretty evident now!  But, I am still at the table with cute earrings and a new nightshirt delivered by my runners and actually had a cocktail last night. My radiologist lies to me. I was able to sip last night. Screw aloe vera shots!  

I am putting my playlist together for Ray - date 6.  The techs dance around while they screw me to the table. We actually have a ball. Elvis got me through yesterday.  Date #6 with Ray. Ray is getting very personal with me. It is difficult to drink or eat. 

Don’t you love my stylish Foley Catheter bag.  One of you should patent this!

It is now difficult to eat or drink. Last night I was hungry so they brought me peanut butter and crackers. I did my best to scrape the peanut butter out of the tub with my finger. That became tiring so I rang the call button to ask for a Xanax and a knife. When I realized what I was about to say I asked for the Xanax only as I thought they all may come running if I asked for both over the speaker. Then when the nurse came in I asked for a knife too. 

Saturday, March 28, 2020

Frank has been involved so much because he lives locally. 

Today, I want to share about my dear son Jack. Jack lives in Kingsport, TN where he has been working within the Faris McDonald’s umbrella since high school. A shy 15 year old has grown up to manage over 16 stores. During college at Xavier in Cincy he worked for McDonald’s and returned to Knoxville completing his MBA. Jack is the father to his precious Harper and also to Gaddon who is Harper’s brother. 

I love going th Kingsport once a month to cook, drive a carpool and provide respite for 2-3 days. I know those days are over which saddens me.