Friday, January 17, 2014

A Last Minute Flight

**THIS POST IS ACTUALLY #3 OF 3 POSTS...
PLEASE START A FEW DOWN FOR THE WHOLE STORY** 

10.26.13
I don't think any of us got sleep Friday night ...and even into Saturday morning and I certainly wasn't expecting the news I had received a little after 6am.  I remember laying in bed with my phone going off...the message from my Mom read "you need to get here now".  That was it.  That was the moment my heart broke.  That was the moment I didn't know how to move, what to do or where to start.  Me being the organizer and freak that I am, I started calling Katrina, Dad, Bannon & Scott.  The only thing I knew was that I had to get us all there and FAST but Florida is soooooooooo far, and even further when you want to be there yesterday.  

I managed to book us all on flights that departed from each city at 8:30am.  The rush to pack bags for 3 people, since Dustin had to stay home, in a matter of minutes was hectic and somehow I didn't do too bad.  I knew if I missed something it could be bought or borrowed from Mom & Tanya...and even Katrina.  I had become a pro at being in a fog and packing in a rush, and by pro I mean getting SOMETHING in the bags...even if it were summer clothes for winter weather!  Dustin drove me & the babies to the airport, we cried the whole way then said our good-byes and off we were.  Traveling with the kids has become so easy and second nature that I just laugh when people see me coming with 2 kids, a stroller and bags.  I probably look frazzled and today wasn't any different.  I barely remember going through the airport, now that's scary.  I remember being numb to everything.  Just sitting there crying, trying not to let others see me so I didn't have to answer the "are you okay?" question.  It was a sad day.  A day we ALL wished wasn't happening.  A day that took forever.  A day that went by so fast.  It was a fog...I was in a fog.  All I kept thinking about was hoping that nobody's plane was delayed and that we all go there together.  Somewhere in the air I got a text from Aunt Lori saying Uncle Pat was on his way too and then heard that Grams and Uncle Matt left and actually had met Uncle Pat on their connecting flight.  WOW.  Just WOW.  This was amazing that we all would get there about the same time and could be there for Tanya.  

Those flights were long and as the anticipation grew I wondered what would it be like when we landed; when I saw my family, when we got to the hospital and most importantly when we saw Tanya.  All the emotions I was feeling were somehow at ease when I saw my Dad, Katrina, Bannon & Brinley walking off the plane.  Finally.  We were all here.  We had NO idea where we were going, what we were doing but we were here.  Together.  That's all that mattered.  

It was well after 10pm when we got to Mease Countryside Hospital in Safety Harbor, Florida.  Safety Harbor?  I know...I KNOW.  We parked & met Mom down by the ER entrance since it was after hours.  Hugs were given out, the tears were flowing and all I heard my Dad say as he tightly squeezed my Mom was "I'm so sorry...I'm so sorry"...over and over.  It wasn't his fault.  It wasn't something he could have changed.  It wasn't something anyone could have changed but I knew the feeling he was experiencing.  We all felt it.  We all were sorry that Tanya was going through all this.  We all were sorry that we weren't there for her.  We were sorry for ourselves because the inevitable couldn't possibly happen.  It's not something any of us wanted to think about or even mention but I'm sure we all had the same feelings inside. 

 It's always easier to keep things inside.  You don't hurt as much, or seem to.  You don't hurt others, or think you aren't.  I know Tanya kept a lot inside, so she wouldn't hurt us, make us worry more than we already were.  She was always "okay" or "hanging in there"...she rarely ever told me how she really felt.  I got that she was "scared & nervous" a few times but she knew in order to keep herself strong she had to keep us all strong.  

As we entered the Critical Care Unit my legs seemed as though they couldn't carry me.  I floated through the hall and into her room.  Then I broke down.  We all did.  The tears wouldn't stop and quite frankly I didn't want them to.  I was happy I was there but sad for the reason.  I was wanting to take in as much as a person can of another.  We just hugged her and told her we loved her.  There was no way to mentally prepare yourself for what we saw when we entered her room.  The wires, monitors and hospital environment was very familiar to me but the tubes, beeping and poor little Tanya just laying there unresponsive was NOT something that was or ever will be familiar.  I hated seeing her this way.  This was NOT suppose to happen.  Not like this, not here.  She was as beautiful as always but all I could stare at was her nose.  It was different.  It wasn't the same.  She wasn't the same.  She was thin and frail, lifeless and calm.  She was what I imagined was sleeping, although I know she probably wasn't.  Not in the hospital, are you kidding me.  Nobody sleeps there.  

She had freshly painted nails...pink ones.  You know...her favorite Sally Hansen Insta-Dry in Racy Rogue or something like that.  I only know because that lady Sally only has so many colors! haha.  She had a nice hairdo and perfectly manicured eyebrows.  She never lost her eyebrows during treatment and honestly I was ALWAYS jealous of them since she never waxed or anything.  She was just her.  In all her perfectness.  Her sweet smell permeated the room as if she had perfume on and it was HER.  Just her.  Nobody, nothing else.

My Dad was standing on her left side with Bannon and then that's when it hit me...when I saw him breaking down, helpless.  We all were helpless but we were right where we needed to be.  We just stood there crying for hours and hours and hours.  Uncle Matt, Grams & Uncle Pat arrived somewhere before midnight and joined us.  We just stood in her room in the dim light crying, reminiscing and staring at her as if she was just going to open her eyes, squeeze our hand or just sit up.  Well, that's what we all hoped for.  A miracle.  Her skin was soooo smooth, like butter (inside joke) and again I was jealous.  Mine was so incredibly dry...ALL the time.  I just love her.  

We took turns, breaks in the family waiting room; which was turned into our personal area quickly.  We had baskets upon baskets in the waiting room and her room full of fruit, snacks, etc.  They were looking out for us because lets face it...we certainly weren't.  I think I managed to get in 1-2 hours of sleep in a 48hr period but exhaustion has passed long ago.  Fasting wasn't something I had in mind but certainly wasn't hard to do.  Finally, everyone was there in the hospital to be there for Tanya.  Blessed she was, beyond measure.  The love for this girl is astounding and overwhelming.  Sunday, at some point, we had a family meeting.  Dr. Stein was able to arrange an air transport back to Arizona but would be around $15,000 and who knows when that would happen, if Tanya would do okay and the one thing that kept coming to me was that she would be ALONE on the flight...all the way across this great country.  What if something happened and we weren't there...AGAIN?  She wanted to go home.  I wanted her to go home, we all did.   

The reality was that she was very sick and even though we couldn't take her "home"; WE WERE her home.  We were there and we weren't leaving her side.  Not at all.  In the few family pow-wows, if you will, we discussed what quality of life she has on the ventilator.  She could be on this indefinitely.  Her liver was shutting down, you could see how yellow her skin and eyes started to become.  She was slowly slipping away, against her wishes.  Tanyas cancer was so aggressive that the 2 months she had gone without treatment had only given it free reign to do what it wanted in a place that it did not belong.  She fought and fought and never stopped fighting.  SHE was relentless...she was brave.  She was strong.  She was so full of courage, love and ambition.  She was not about to let this monster take anything else from her and she didn't.  She won.  She took her life back.  Though she may not be here physically with us, she is more alive now than ever before.  

10.27.13
As a family, we decided to take her off life support.  That's no life for anyone and certainly not what Tanya would have wanted.  We got pizza, her favorite, and went to Clearwater Beach.  We bought flowers and sent them out to sea.  When we returned to her room we said our goodbyes and she was taken off life support.  Nobody knew what to expect.  They doctor & nurses had to titrate her medication so they knew she could handle being off the vent.  Of course she handled it like a champ and was breathing on her own.  Maybe our miracle was happening?  We held onto any little piece of hope there was.  That was at 5pm when she was taken off the ventilator, on Sunday.   As they allowed us back in the room we all huddled around her again and the crying continued.  The million "I love you's" were coming out of our mouths left and right.  More than you can imagine...and then something happened.  Something AMAZING happened.  Tanya began moaning!  She muttered something and although it wasn't long lasting and we didn't know what she was saying, Mom assured us she was telling us she loved us too!  That was the last thing Tanya said to any of us.  She knew we were there and she was beyond happy that we did make it...but she knew we would; in one way or another.  

Tanya was given medications to help dry up some of the secretions in her lungs that was giving her that gurgling sound as she breathed.  He breaths became less labored, he skin looked better (not as yellow) and she looked peaceful.  She looked amazing!  That was Monday morning.  Still kicking cancers ass!  Breckin had left his botty (blanket) with her on Sunday night...and since it's practically an appendage, this was HUGE!  He knew his best friend needed the comfort and warmth of his botty more than he did.  He never once asked about it or cried for it.  He loved his Aunt Tata sooooo much.  Me being the overbearing one decided since all life saving measures were being removed, I would make her comfortable.  Maybe I shouldn't have, but I did.  Everyone kind of just looked at me without saying "what are you doing?"  She was my sister...my baby sister and I wasn't going to let her lay here in this bed where she had been since Friday, uncomfortable.  She always hated the monitors, wires, etc.  That was the one and only thing she ever complained to me about.  So restricting.  So...I took them off.  I lowered the bed rails so we could get a little closer.  I took off the stickies all over her chest that were connected to wires.  I did some exercises on her legs and arms because come on, have you ever had your limbs stuck in one position too long?  It hurts!  She got her own pillow, that Breckin now sleeps with every night. I removed the arm restraints from her wrists & I hoped that she felt at least some comfort in her bed.  

10.28.13
The kids were getting restless, emotions were higher than normal today so we took a walk.  They loved their walks with Tata, pointing out different colors of cars.  That's how she taught Breckin his colors!  So off we went.  We stumbled upon a park just outside the parking lot of the hospital and hung out there.  Released some pent up energy the kids had and soaked in as much sun as possible.  For being in a hospital for 3 days the kids were surprisingly doing well but the weather was too beautiful to not enjoy!  Soon Uncle Matt, Katrina & Brinley joined us and then Mom & Dad dropped off snacks as they headed back to the room.  We decided to go get the kids some lunch and hit Walmart for the little things like contact solution and shampoo, that we had forgotten.  Summer clothes too.  

That's when we got the call.  The news that I knew was coming but wasn't ready for.  I just stood there as Katrina told me.  We didn't eat lunch.  We got back in the rental car and headed back to the hospital.  I wasn't there.  We weren't there.  It kills me every day to know I wasn't there for her, yet again.  I wasn't there when she left us for a better place, a place we are all jealous of.  I mean walking the streets of gold with God...come on!  It hurts me that I wasn't there with her in her last moments, but from what I heard; she was NOT in pain.  She did not suffer and there was a calm in the room like never before.  She was at peace.  She was in heaven.  She knew we would all carry on her memory and she's right!  Tanya left us on Monday, October 28, 2013 @ 105pm.  She had joined many close friends and loved ones and I believe Morgan Cooper was the first one at the gates as she entered!  She probably shoved her way through to see Tanya!  I'm so glad that Tanya had Morgan by her side so many times throughout her fight and every day before that.  Until we meet again girls...I love you both more than you could ever imagine!!!!

Florida Bound = Utopia Wellness Center

Of course I wanted to go sooooooooo bad, but lets face it...my monsters in a Wellness Center setting?  Probably not the best idea...so I headed up to Show Low to hang out with Katrina and get stuff rolling for the Fall Fling she & a few friends were putting on!  The Fall Fling went well and we brought in $5000 for Tanya!  That's huge and we thank EVERYONE that helped us pull this off.  Backing up, Tanya was packing (for an army) for Florida and as you can imagine was so scared, nervous, excited and ready to get better!  So off they went...Florida bound.  Sunday, October 13th Tanya, Mom & Scott were on their way, she texted me as they land saying "it's beautiful here!!!" and although her flight wasn't fun and she got sick a few times and was so incredibly tired, I'm glad she was able to take it all in!  Her treatments started on Monday and meeting/information galore flooded in.  Overwhelming?  YES!  But in true Tanya fashion she took it all in like a champ.  She was starting to learn how to control her vomiting, since her body for so long had gotten use to doing it, she had to retrain.  Her bleeding had almost stopped but she was still nauseated and tired all the time...but was getting better!  She couldn't wait to have more energy and really wanted to get out and explore the city & most certainly was ready to come home a week later!  Haha...she still had 11 weeks at least to go.  BUMMER.

As Tanya was getting well, we all back in Arizona wrapped up the weekend of the Fall Fling & I was packing to head back to Washington that was on Monday, October 21st.  Dustin, the babies and I drove straight through (we are champs at this 25hr drive at this point) and  made it home just in time to get Breckin to his first ever field trip!  That was exhausting for sure!  We began getting back into a routine, unpacking from moving in August and just getting back into the swing of things...until Friday October 25th when my Mom told me Tanya had skipped her appointments at Utopia because she wasn't feeling well.  

She had spent the day in bed until she couldn't take it anymore.  She couldn't breathe and although I can only relate it to falling off a swing in mid air and losing your breath, I'm sure it was much worse.  Much more worse than we could have ever imagined.  Worse enough for Tanya to not be able to walk from the bed to the table.  Worse enough to tell my Mom she was scared to death and that she needed to go to the hospital.  Worse enough to actually for ONCE complain.  Worse enough for the ambulance to come.  Poor thing.  All I could do was cry.  Cry because I didn't want her in pain, because I didn't want to hear this news, because of the unknown.  Because she didn't deserve this and most importantly because I wasn't there and didn't want to lose her.  I know, not a good time to think about myself here but she's my sister.  My best friend and I WASN'T there for her.  The worst feeling ever.  I knew my Mom had complete control of her and could manage just fine but it still hurts when you are miles and miles away and feel helpless.

The last text messages I have from Tanya was on Thursday; we were talking about my crazy kids and how fast they were growing.  How much they missed and loved Tata & how much she missed and loved them!  Tanya was admitted to Mease Countryside Hospital in Safety Harbor, Florida on Friday afternoon through the ER and was quickly admitted.  The ER physicians did a CT scan and became concerned with the findings; started blood work and soon informed her that her liver was shutting down & that she was more sick that she (anyone) realized.  She soon received a bed on the Critical Care Unit and was assigned Dr. Robert Stein & RN, Dawn.  Dr. Stein was an Intensivist & Pulmonologist and began quickly working on Tanya and had taken a special interest in her as his son was her same age.  Tanya honestly could not have received better care than she did at this hospital.  EVERYONE was beyond amazing.

Saturday, morning the breathing difficulties continued and had gotten worse, Dr. Stein told Tanya she could go on a ventillator to help her breathe.  He gave her all the information, risks, benefits, etc and told her he would be back in 1 hour to talk to her.  Dr. Stein was called back to Tanya's room not 20 minutes later and she asked him "how soon can you do this?"  He replied with "as soon as you want it".  Tanya had the intubation done, her choice, and was heavily sedated to keep her from naturally wanting to pull it out.  

I can't imagine how difficult this was for my Mom who had to sit there and see her baby in pain, suffering and not being able to breathe.  As a mother you want to fix everything and she couldn't.  She couldn't take the pain away, but she was there and that alone I know meant more to Tanya than my Mom will ever realize.  Dr. Stein told Tanya that once the tube was placed, she would not leave the hospital without it; she understood and I wholeheartedly believe she was just giving all of us time to get to her.  She wanted to go home; she didn't want to be there.  Of course she didn't want to be there, especially when you don't feel good...all you want is your own bed, your own house...HOME.  



Try & Stay With Me Here...

Hello everyone, this is Ashley and I'm here to update you all on the happenings since Tanya posted in August.  Tanya continued the clinical trial in Scottsdale for 2 rounds until she ended up back in the hospital on Friday, September 13th at Banner Gateway Medical Center.  She was having pain, blood pressure and heart rate through the roof, unstable potassium levels which were fine one day and severely low the next and was impacted.  Despite not wanting it, Tanya had to receive an enema to help since the tumor in the pelvic region was putting pressure on the colon, thus backing everything up; poor girl.

I can't even think for one moment how she must have felt, so helpless, lost, angry and frustrated for the lack of compassion, skill and knowledge some of the nursing staff had.  After the enema she started feeling much better and spirits were up a lot.  The impaction on film was about 3-4ft up from the tumor, so you can imagine how uncomfortable she must have been, but always had a smile on her face and a positive text to me!  Of course we were back in Washington and SO far away, which kills me!   We continued to text back and forth over the days and night and on Sunday the 15th Tanya had a CT scan of the abdomen & pelvis to determine how the clinical trial drug was working, an EKG to make sure her heart was okay and was on O2.  They was mounds of blood tests and speculation that she had a virus called VRE.  She had cords everywhere and monitors for everything which frustrates her even more, she hates those damn cords!  With the anticipation building for the results on the CT scan Tanya's night went less than relaxing.  The RN was in there till well after midnight, then they come in ever few hours for this and that so she was really tired come Monday.  In a text from Tanya, she was suppose to see her Oncologist, Dr. Schlumbrecht in the early afternoon and would be released to go home either that night or Tuesday.  This was so odd to me.  Why are they sending you home? Are you keeping food down?  How is your potassium?  She responded that she had no idea why they were sending her home, it was just what his PA said.  This clearly worried me...worried me to the point where it made me sick to my stomach.  Being in the medical field for the last 11 years and working with surgeons, oncologist, hospitalists and patients (cancer) day in and day out, I had a bad feeling that something wasn't right. Doctors don't just "send you home" for no reason.  Was the cancer gone?  Was the cancer spreading?  What was the treatment doing?  I wanted questions and I wanted questions NOW.  I hate the waiting game our providers like to play.  I know they are busy, believe me, I know first hand how a medical practice works.

Anyhow, her blood pressure was still bouncing around but was 129/90 when we talked & her heart rate was normal again.  She was eating again, which was something that hadn't been happening or at least staying down, for a while; so that was good.  Since I was feeling quite helpless and 1500+ miles away I had to call in my resources and who was best at that then Tanya's friends Abi & Krystal!  Abi went on Sunday and Krystal showed up Monday afternoon.  She even brought the requested Sour Cream & Onion chips she had been craving!  Thanks again, Krystal for doing that for me...it means so much to me that you and Evan were there with her!

So as my house was a disaster from trying to unpack and get some normalcy to our new lives in Washington, I put a movie on for the munchkins, Christmas of course and anxiously awaited any news from Tanya.  At 3:43pm I got a text from Tanya that said: "How are you?".  "I'm fine, why?" I replied.  She says:  "I got the CT results"...."and?"..."Not good news.  Want me to call or text you?".  "Call".  That was the moment my heart and stomach sank.  I started shaking uncontrollably.  I was about to hear the news from my sister, who was fighting the biggest fight of her life.  News that I had become so use to hearing sadly, every day.  News that nobody wants to hear, that nobody wants to tell, that nobody wants to think about.  I had somehow made it upstairs away from the kids in a quiet area.  It was rainy outside (surprise surprise) and as my phone rang with Tanya on the other line I just slumped down on the floor.  I said "What did he say?" Tanya:  My cancer has spread, it's everywhere.  I have over a dozen spots on my liver, spots on my lungs that have shrunk and some that have grown.  The clinical trial drug isn't working and i'm getting sicker because of it.  My body is so toxic that there isn't anything they can do for me anymore except keep me comfortable."  Me:  "What, no chemo, no nothing?" Tanya:  "Nope." "So what now?"  They want to put me on hospice and send me home.".  Me:  "They can't.  I'm so sorry, I hate that i'm not there with you RIGHT now".  Obviously by this time we were both balling our eyes out on the phone.  I hated that I wasn't there for her.  There to give her a hug and just take her in.  To be there as a punching bag if she needed it.  A shoulder to cry on...anything.  I hated it all.  We continued to cry and try to come up with options.  I asked what next?  She said...well they aren't the only ones that treat cancer, so if they won't help me I will find someone that will.  I told her that I loved her so much and I would call her back in a little bit so she had time to make other calls, scream or whatever she needed.

I hung up with Tanya and immediately called Dustin, who was at work and busy as ever.  I was crying on the phone and gave him the news and was told to pack our stuff and get ready to leave for Arizona.  In the midst of all the sadness, stress and packing I remembered that earlier that day I pulled out a memory from the jar Tanya made me as a going away present and it said "Always being there for me".  I text her a picture and we both started crying all over again.  Her strength is amazing.  She told me "i refuse to let this be it" and an hour later we left Washington and drove all night and day to be with her.  I cried the whole trip, constantly texting her and making sure she was okay.  She said she was "holding up pretty okay.  Angry and a little lost feeling".  I know there wasn't anything I could do or say to make the bad news and results go away, I just knew I needed to be there.

We arrive in Gilbert on Tuesday at 7pm after stopping and getting Tanya a Green Tea from Subway, her request.  The kids and us were beyond ready to get out of the car and see Tanya and Grandma!  I had never been so happy to see this hospital in my life.  When we walked into #1531 I was so beyond happy to see her.  I had to hold it together...and I did.  I think.  Gosh I don't even remember...that drive was intense.  We visited for a while before we forced our way out the door, not wanting to leave her side.  The excitement on the kids & Tanya's face was worth the trip and I would do it every day if I could! I was lucky enough to spend the day on Thursday with Tanya as she stayed in the hospital a few more days and had to receive 2 units of blood and 1 unit of platelets.  I went back Friday morning and spent the day with her too; took her a Vanilla Bean Frapp from Starbucks.  We, well I, did some work on her 401k, fundraising, and lots of eating while she slept...soaked in as much time sleeping as she could.  Which I'm sure wasn't much.  It was right where I needed to be.  No kids, no noise, just being there for her...like always.  We ate lunch together, okay well I ate  my lunch and she ate 1/2 of hers....I probably could have ate hers to.  I guess you know what I do when i'm stressed!  Later that day we met with Dr. Singh who is the hospitals naturopath and went over all the crap she was taking and eliminated what she felt wasn't necessary.  Tanya went home on Friday, September 20th...FINALLY!

I was lucky enough to get in tough with "The Oil RN", Sarah...if you don't know her start following her on Facebook or Instagram (she's amazing) and together we set up times for Tanya to get the AromaTouch therapy done with doTERRA essential oils.  If you don't know about doTERRA...go check them out on Tanya's website found here:  http://mydoterra.com/hopefortanya!  All proceeds go to Hope for Tanya Foundation!  Anyhow, Tanya was receiving this AromaTouch by Sarah until I got certified...let me tell you it's soooooooo nice and relaxing.  Tanya said it was the most relaxed & best sleep she had got in a long time!  So she was getting these done along with a host of oils added daily and she was feeling better & she started seeing Brent Timco in Gilbert who is an accupuncturist and he helped he immensely with her nausea and vomiting during our search for a Wellness Center, which we found in Tampa, Florida!  All arrangements were being made for Florida as Tanya had the energy.  Hotel room booked, flights booked, Utopia Wellness Center booked....everything taken care of and ready to go...