DAY 2...

It's about 10pm here in Wisconsin. I am pooped...but in a good way.

We had a pretty good day.  I got a call this morning about 7am, which is 5am Arizona time so I was still in bed.  CTCA calling to tell me that my schedule for the day won't start until about 11:30am.  THANK YOU LORD! I needed the extra sleep and I needed to not be getting out of bed in a panic and hurry.  I fell back asleep and was up a few times between then and about 9:50am.  When Scott woke me saying we had to go NOW, since we scheduled ourselves for the 10am shuttle.  I said "what time is it?" When he told me I said "nope call her back and tell her we are going at 11am instead" I didn't want to spend the whole day at the cancer center again! 

We got to first connection and they gave me my schedule.  11:30am Meet with Nurse Navigator.  and 12:00pm was Mind and Body Consult. THAT WAS IT FOR THE DAY...umm...

So we met with the RN and she said they did get authorizations for the scans Dr. Williams was wanting to do on me, however they were full for the day today, so I will have them on my schedule for tomorrow.  Tomorrow will be a busy day for sure...We have to be up and on the shuttle by 7am.  First appointment is MRI prep at 8:15am, I am not sure the order nor the times for the following appointment but they will all go down at some point tomorrow.  (she told me the schedule, but I however didn't write it down so I will get it tomorrow when I check in.) So we have MRI, New Patient Orientation, Pastoral Care, Acupuncture, CT and that is it.  Our schedule will conclude around 1:30pm. 

 

Since our schedule was so light today due to not being able to get schedule for my scans we got a free day to go into the city.  We finished up with our Mind and Body consultation and headed to the Bistro for lunch.  We had lunch which MINE was better than it has been the last few days.  From there we got the limo to take us to the train station.  We took the train into the city and spent a few hours just checking things out.  We wanted so badly to go to the Shedd Aquarium (thanks Michael for the tip) but we didn't get to the city until about 4pm and it closed at 5pm.  So we didn't have time to make the whole aquarium.  We weren't sure what the night life was like on the train so we didn't want to get back too late.  Here are a few pictures I took on the train...First one:: our limo to and from anywhere we need to go.  Second one:: Getting on the train...This was my first train ride on a real train and I loved every minute of it.  I am pretty sure Scott thought I was crazy!



This one I took cuz it was just funny!!! HA HA We made stops often from the time we left Kenosha Train Station until we go to Chicago.  This was one of the stops! :)  INDIAN HILL...I sent it to Ashley and she LOL.  I knew she would get my humor! :)

The train ride was about an hour...Not to bad, lots of interesting people ride trains I have come to realize.  Once we got to the city I was just a picture taking freak! I will share some of my favorites of the day...

Here is the Willis Tower...It's a VERY large building so this is just the bottom portion. I did take pictures of the whole thing, but I am not going to share those.

This is just a shot of some random building in the city on our walk around the city.  Nothing too crazy or interesting, but I love sky scrapers! They just fascinate me.

These next few are the view from the Sky Deck at Willis Tower in Chicago.Once we got inside and found where we were going, this was the site we saw...IT'S SO AMAZING...You can just see forever up here! Lake Michigan is MASSIVE...and just so beautiful. 

**SKY DECK!** We are about 130 stories above ground and in a GLASS BOX! It's just crazy!  I wasn't sure I was getting in the box until I saw this little 2 year old hop in there like it was no big deal.  SO I thought I can do it! Ha ha every trip some little kid shows me up and I have to prove myself.  I am sure glad that little kid is always on our trips, or I wouldn't do some of these crazy things Scott always finds in each city.  I got in the box and I am glad I did!  I had Scott take pictures of me laying flat on my back...making funny faces...but they didn't turn out like I wanted...SOOO...

 

 

 

I am NOT going to post those pictures he took of me in this GLASS BOX...as I HATE my hair and I think I look fat with my GUT and DOUBLE chin...so you have to get the idea with this one! :) It was SO hot in there! Sun shining and clear it was a perfect day to be in Chicago. 

 

After the Sky Deck we found a sea food place to eat at that came HIGHLY recommended by Scott's friend Mike.  (he is from Chicago) So we grabbed a cab and headed for dinner.  We arrived just a few short minutes later and walked into this place.  Talk about being UNDER DRESSED!  I am sure everyone looked at us like we were homeless bums needing a hand out.  Oh well...we stayed and enjoyed dinner in the bar.  Dinner was delicious and just what we both needed.  We went big...and even ordered Apple Pie and Ice Cream.  It was THE BEST APPLE PIE I HAVE EVER HAD IN MY LIFE...just fantastic.  I was floating on a cloud of sugar, spice and all things nice.  :)  I am glad cheating today was just apple pie and one scoop of ice cream.  I am even more thankful it was as delicious as it was.  :)

Grabbing a cab we headed back to the train station.  It was just a few short hours of being in the city, but I think a few too many for Scott! ha ha he kept saying "I am not a big city guy" ha ha or "I like the burbs".  Took the cab to the wrong train station but was only 2 blocks away from the right one so we rushed over.  Got our seats with 3 minutes to spare before it left! Talk about calling it CLOSE! It was a LONG train ride back.  My bladder was FULL to say the least! They have bathrooms on the trains, but if you know me at all you know I would rather hold it, than use public restrooms.  I was in luck, our CTCA limo was there at the train station to pick us up and take us to the hotel.  My luck quickly changed when we got the chatty 70 year old vegan that wanted to tell us all about his lifestyle change 20+ years ago and since we hadn't really seen Zion, he took the scenic route!  Thank you! I guess I need to get over my fear or public restrooms and I would have enjoyed the ride a little more.

 

In his defense, he was SUPER nice!  Gave us a lot of infromation and book suggestions.  I am becoming a believer in God putting people in your path, to see if you pick up on the hint or direction God wants you taking.  I think this gentleman was put in our path for a reason.  He had a lot of information to share and we had a lot of information to take in.  Once we arrived at the hotel he got out and asked if it was ok for him to hug me.  Oh this made the long scenic route worth it.  It's people like him that just make this fight so much easier.  People that don't know what your going through but know what your going through.  That person that just has to know a simple HUG goes a LONG way.

 

We remembered walking into the lobby that they had called around 8am to tell us we had a package at the front desk.   So we stopped by to get it.  At this point it was about 9pm.  Since we were running late this morning and didn't know what the package was, and we didn't know what our day would hold at the cancer center. We didn't want to have to carry a box around all day.  So we just left the package at the desk.  Well that was probably a mistake.  My amazing, wonderful, beautiful, lovely, supportive family members sent me flowers saying WE LOVE YOU!  When I got to the hotel room and opened the flowers they still were just as beautiful as I'm sure they were at 8am this morning!  :) It brought tears to my eyes knowing that even being so far way my family is still so close! It just what I needed.  THANK YOU, THANK YOU, THANK YOU Grammie, Mom, Dad, Katrina, Brinley, Bannon, Ashley, Dustin, Breckin and Ella...You all are my backbone, my life line, my EVERYTHING. Without you all I can not fight this fight.  I thank each of you for everything you do, have done and continue to do for me from the bottom of my heart to the whole of my being.

 

 

I was asked today in my mind and body consultation "what kind of support system do you have back home?"  I said "A VERY LARGE SUPPORTIVE ONE" she said "well some times patients come here and find the support here is better than back home and some even get anxiety leaving to go home, knowing this support system can't go with them" I just simply smiled.  She doesn't know what kind of support system I have.  She doens't know the type of folks I keep my company with.  She doesn't know the family members I have, the strong willed, loud and crazy family members I have.  It slightly irritated me.  I let it go.  Because, she was trying to help, not make me irritated. She did let me know that they have therapist on staff here to help in anyway they can.  Support for me as a cancer patient, fighting this fight.  If I am having a hard day and like to talk about it, I can call them or make an appointment if I am here at the facility.  They have those same theapists for anyone in my support system that is having a hard time and needs to just talk to someone, you can call them and they do phone call appointments. 

She told me a lot of people come out here to do treatment are alone, as the treatment center doesn't pay for the loved ones to fly out, just the patient and not everyone can afford to fly back and forth as often.  This has become a big issue for Scott and I these last few days being out here.  Like I told him today we can't keep focusing all our attention on this one detail. We don't even know what the treatment plan will be yet.  What if I am here 3 days and home for 27?  The fact is, any treamtment done away from home, Scott, Sophia, Bailey, my family, life in Arizona is going to be HARD.  As much as I put it out of my head and try not to think about it, it's still there.  I have gotten use to having Ashley just up the road, and seeing her daily.  Those darn crazy kiddos she has running around all day making me crazy and keeping me sane.  It won't be easy, nothing in life worth fighting for is ever EASY.  I am a strong willed individual and I will make this EASY...I have no other choice. 

 

Our housekeeping staff is amazing...They leave us little notes on our note pad with a different little saying each day...today it said "May God be with you -House Keeping-" I smiled and said I believe he was! :) Thank you housekeeping for the little touches.  This place is nothing like I expected and was really wanting it to be in the big city of Chicago.  I am glad it isn't.  This treament center wouldn't be the treatment center it is, if it was IN Chicago.  Its the little town of Zion that makes the whole experience that much better.  The whole town in the treatment center.

 

On that note, tomorrow starts early and I don't seem to be sleeping much lately.  I think it's the seperate beds we are sleeping in, (we have full size beds in the hotel) the fact that I don't have Bailey at my feet, Sophia next to my bed snoring her life away...so I better sign off and get to bed so I can get a few hours of shut eye, if I am lucky.

Five days in a row of going to bed after midnight and up at 5am. 

 

I'll leave you with this quote...

 

 

DAY ONE...CTCA

Today...oh today. 

It's been a LONG day.  I started about 530am.  Which is a 330am Arizona time.  I wasn't up but I wasn't asleep! That's the most important part of this statement! We left the hotel about 9am sharp.  I mean 9am ON THE DOT, they run on a schedule around this place.  Everything is done by a schedule.  Which makes this girl happy considering being organized is kind of a big deal for me!

I am what they would clinically call one to be OCD. I honestly don't know how Scott lives with me. :) He has told me before I need therapy!

ANYWAYS...I wasn't to check into the hospital at "First Connection" until 11:45am.  We checked in about 9:30am.  It was a busy place at the 9 O'clock hour.  We had shuttles, limos, cars, trucks, vans, walkers, just people EVERYWHERE.  We got our badges and were told how to use them, how to get to the "Wholesome Bistro" and to be back at first connection by 11:45am.  We had breakfast, which wasn't what either of us expected.  It was food however.  We sat and talked in the bistro for about an hour and decided to go for a walk around "town" and see what we could see.  This was the view from about a block away.  I can't make the photo bigger I am sorry...but the white building to the right of the photo is a small portion of the hospital.  

 

The whole town looks like this...It's something you would see in the movies.  All the roads all over town have trees lining them, I can only imagine how beautiful this place is when all the trees are in bloom.  The little house to the left is a Bed and Breakfast.  Cute little place really.  Zion is about 45 minutes to an hour away from Chicago.  We asked why they tell us the facility is in Chicago when it's not.  They couldn't answer that, but said the reason for it being in Zion is because it's so spread out, room for expansion for one, Chicago is a big busy city, and stressful.  Whereas Zion is very laid back and kinda peaceful.  They want all their patients having a stress free atmosphere.  This is everywhere in this town.  They know you are from CTCA and they are just so nice and pleasant.  The cab driver wouldn't even take a TIP, cuz he said "he was here to take care of us, not us take care of him". 

 

After we got checked in we met so many people, I have business cards to prove it! I can't tell you really who they all were, what they did or why I met them.  I just know I have a business card to call them day or night if I needed anything.  Our first visit was with the financial services.  Like Bannon said "Figures you have to hit the financial office first.  America" LMAO You crack me up B!  This is where she broke down my benefits with insurance and gave me a run down of what to expect.  Then we met the RN.  She collected my medical history.  From there we were moved to a bigger room and saw the Nutritionist, this was about 5 minute visit, since I didn't have any side effects or complaints.  Then she said I was doing everything she would tell me to do already so that was that.  We would be in touch after treatment started. 

Next they sent in the Naturopath.  I can't for the life of me tell you what his name is.  I have his business card though, with a picture so I can study that later. This visit was quick as well.  He knew I was seeing Dr. Rubin in Scottsdale and said "Oh yeah I know Dan!!" So that's a good start.  Said he would be seeing what my treatment plan was and then he would come up with his treatment plan based off what Dr. Rubin is doing in Scottsdale.

After this we sat and waited a long little bit getting anxious.  Med Onc was up next.  I DO however remember her name. DR. WILLIAMS.  She is an older lady with gray hair, soft hands and a warm smile.  She did a pelvic exam (never a fun part of these appointments).  She wants to do some imaging.  I am not sure exactly what imaging yet, but I know she was wanting to do another PET Scan.  Since my last PET was about 2 months ago.  She is going to do some brain imaging as well, since none has been done on me, and my cancer can metastasize to the brain.  She is ONLY doing this as precaution to make sure we have a baseline of imaging of my brain.  She doesn't suspect anything.  More labs were ordered, any kinda of blood work that they can test me for they are.  Liver, kidney, Cholesterol, thyroid, platelets, WBC, let's just say everything! They took about 8 vials of blood.  I had an EKG done as well.  These results will be back this week so I will have them before I leave town. 

 

 

 

We were told in most cases patients come out for the consultations and then go home and return at a later date for treatment.  We will still have all the results to anything they run on me while I am here before we leave.  We left the facility about 5:40pm and took the shuttle to Wal-Mart.  We HAD to get our own groceries.  We had dinner at the hotel in our room last night.  We ordered 2 Cesar salads, and artichoke dip...GRAND TOTAL WAS $50! Um...for WHAT exactly!?  The salad was less than desirable.  We didn't even eat half of either of them.  I had disappointment written all over my face.  We requested a "FRIDGE" to be brought to our room...MINI is what we got...No joke...I think it's about 2 feet tall and about 2 1/2 wide.  Here is a picture of our MINI packed to the max with THE GOOD STUFF...

It's weird to think that this was such a hard lifestyle change, but as we were sitting in the bistro today we were talking and I told Scott I just want my juiced veggies, fish and some water.  He looked at me like I was crazy! So now it feels a little more like home, complete with Blender! HA!

 

My poor Scotty.  He has been having a hard time this trip.  It's not so much of the little get away we were both hoping for.  It's not in a town or city we could do things to enjoy ourselves. Take our minds off the days we have.  He seemed so down and just blue today.  I asked him how he was doing and he told me he was just emotional and tired.  I just feel terrible.  I know it takes a toll on all of my supporters.  To you all I am sorry.  I am sorry I have to put you all through this day in and day out.  I wish there was a way I could take all your pain and stress away.  Scott is really stressed out and worried about me doing treatment out here, and being out here alone.  It's not going to be easy that's for sure.  He had made a comment a few days ago about getting married and then moving to another state to start fresh.  I asked him why?  He said it would just be nice.  Then after today he said "nope I can't do it, there is no place like home...and home will always be in Arizona".  Looks like you all are stuck with us FOREVER! Haha!!!

 

He is passed out and I am actually shocked he made it home from CTCA, well he did fall asleep on the way to the hotel.  I had to nudge him a few times.  I think my steroids are taking over and I can't sleep.  I got a few good hours on the plane and I haven't slept much since then.  It is probably that coupled with the anxiety of this whole trip.  I am sure I will zonk out as soon as I get home.  Let's just hope I am home by Relay and I don't pass out mid Relay! :)

 

That's all for now, I will have more much more tomorrow I am sure. 

 

I love you,

Tanya

WE ARE IN CHICAGO...well Wisconsin...

HELLO one and all!!!

We are here, we have landed, took a limo to the hotel, got checked in and unpacked and met a few other CTCA patients on our way.   Joe is our CTCA driver is super nice and helpful.  He met us at the baggage claim and took our bags to the limo and we were off.  Our hotel is JUST over the Wisconsin line.  So we are technically in Wisconsin, but only a 15 minute drive to CTCA.  Just a hop on the freeway and we are there.  GREAT news my blender made the trip! Good thing I packed it with like 10 scarves! Ha ha so did the gallon of water! :) I am not so sure how it will make the trip home, the water I mean since I will have to unpack it from when it was shipped to me.  I got some tips from Pinterest about traveling and all your bottles and how to keep them from exploding, it worked! Not that I had any doubts on pinterest! :)

 

This place is NOTHING like I imagined it would be.  Ha ha I was expecting a BIG city, tall city skyscrapers, something like downtown Phoenix.  HOWEVER, that's not what we got.  We have a lot of "country land" barn style buildings...quaint little town.  We are actually in Pleasant Prairie, Wisconsin.  There is a outlet mall right across the street, a McDonald's, and a Culver's close by...nothing we can eat exactly.  Maybe we can take the shuttle to a wal-mart or something and get our food and odds and ends. We are staying at The Radisson and they have sleep number beds! Ha ha Scott has been wanting one of these and was SO excited to try it out...first thing he did when we walked in was jump on the bed and find his "sleep number".  It's 40.  He then discovered that this is basically just a high tech air mattress! LOL and was disappointed!

 

There is a two hour time difference.  So I will try to remember that when texting or making phone calls...However it will effect me more than you guys. :) We have some free time this evening and will be heading out to get some dinner, somewhere NOT McDonald's.  We don't check into the hospital until 11:45am tomorrow.  So we can sleep in since the last two days have been HARD WORK preparing for this trip.  When we got to the hotel, we were under the understanding that we would be paying for the hotel at a discounted rate of $75 for 6 night stay.  Well to our surprise they said CTCA covered the Hotel.  How awesome is that! :) Then I got a text from Mom saying "Zion is the place Jesus called home" (In the bible) that's a sign of great things to come! I just know it!!

 

Thelma one of the ladies we met in the limo has been doing treatment with CTCA and said "all the good things you've heard about CTCA is all TRUE, get ready for a life changing experience.  She didn't want to share much on what kind of cancer she had.  Said her original diagnosis she beat, but now she has something new and isn't ready to discus it with anyone."  She went to CTCA in New Jersey (where she is from) for her first diagnosis.  Once she was diagnosis with this new cancer they sent her here to Zion.  She was out here for 6 MONTHS, doing treatment and then was home a week to get her affairs in order and is back out here for another 8 months! This kinda freaked me out! I am not, nor prepared to be away from all my everything, family, friends, dogs, home, EVERYTHING for any amount of MONTHS...I think I just had it in my head that my last treatment was 3 days on and 21 days off.  So I had it in my head it would be the same here.  I guess I just have to take a step back and remember THIS IS ONLY A CONSULTATION, so put it out of my mind until I see CTCA doctors tomorrow.  Not only that but EVERYONE's treatment plan is different for everyone and every cancer. 

 

I am going to sign off for now and get some dinner and relax.  I love you all and thank you all for the prayers for a safe flight and kind words you all have shared with me today.  I can't thank you enough.  You know who you are! :)

 

Until tomorrow,

 

Tanya



IDIOPATHIC THROBCYTOPENIC PURPURA

I saw Dr. Bibb today. He is NEVER on time and I HATE that!! However, he is a fantastic doctor so I guess he's worth the wait. I got to the office about 930am I got labs drawn and then the rest was an all too familiar waiting game. He FINALLY came in to see me about 1130am! He apologized countless times. Said I was the sweetest patient he has! Ha! Little does he know!! Ha ha I think he is buttering me up!! :)

I had my platelet transfusion on Thursday 04.18.13 @ Banner Good Sam. I was suppose to get labs at Bibb's office on Friday to see what my count was the day after my transfusion. Needless to say that didn't happen as Bibb's office dropped the ball! That's even AFTER I called his office twice! Whatever!!! just another reason to go to CTCA. I went in today to get labs and to see him. Here's the news I got...

A) My platelet count was 37,000 on Friday (I had labs drawn in Dr. Rubin's office)
B) My platelet count was 37,000 again today. When they were drawn in Bibb's office.
C) I have ITP...or he is 99% sure I do.

We now know I have ITP based off the labs. Since I got transfused on Thursday and my labs were 37,000 on friday. This tells us my body is destroying the platelets. Getting a unit of platelets normally my labs would be 140 or higher. Mine are not. All those platelets I got were destroyed in a matter of a day.

Where do we go from here? All of my doctors are fully aware I am going to CTCA on Sunday. Our plan for now is to put me on steroids. Prednisone to be specific. So the weight I'm trying to get OFF is going to be even harder. Bibb has me starting those today and I'll stay on them until I am back from Chicago. This is for one reason and only one reason...to make sure my platelets stay at least 37,000 or higher while I travel to Chicago and back.

Upon my return (whenever that may be) I am scheduled for IVIG infusions on Tuesday May 7th and Wednesday May 8th. I'll have more labs drawn on Tuesday May 7th as well. I'm currently scheduled for Thursday May 9th for a bone marrow biopsy (BMBX) at Banner Good Sam. In hopes the IVIG brings my platelets up enough to do a BMBX. We haven't yet scheduled the lung BX yet, we want to get my platelets up before we do so.

IVIG for for those of you that don't know what that is I'll explain it to you. IVIG=Intravenous Immunoglobulin. It's a blood product that is administered intravenously. It contains pooled, polyvalent, immunoglobulin (antibody g) extracted from the plasma of over 1,000 donors. IVIG effects last between two weeks and three months. Side effects include: headache, dermatitis (peeling of skin on palms and soles) infection (such as HIV or Viral Hepatitis) pulmonary edema, allergic reactions, acute kidney injury, venous thrombosis, and aseptic meningitis. WOW right!?

So that's the plan. We leave for Chicago on Sunday and I got the all clear to fly! So we are all set. :) There is a chance I won't be back for the relay for life on May 4th. In that event I hope you all will still attend and do me proud! :)

EMOTIONS RUN HIGH...(pardon my english)

My emotions are running high today.

I am not sure if that is a good thing or a bad thing. I had my six week follow up with my gyn/onc today.  She asks me: "Tanya how are you doing?" My response: "good" she says "I am beginning to wonder about your mental stability." I was a little shocked and asked her "why?" She responds "There is a lot going on with you and you just seem to think nothing is a big deal, everything is rainbows and butterflies.  This is a HUGE deal, I just wonder if you have excepted it?  Have you dealt with it?  You know we have people you can talk to"  Slightly irritated I look her in the eye and say "Yes I have dealt with it, I know I am a cancer patient.  I am fully aware I have cancer.  I am fully aware this is SERIOUS.  I know how important this situation is.  I refuse to sit on my fat ass all day long, dwelling in the fact that I.  HAVE. CANCER.  I will not waste the rest of my life feeling sorry for myself, and throwing a pity party.  I know I have an active tumor in my pelvis the size of a fucking golf ball that puts pressure on my bladder every day all day long.  Or that there is a very real and huge chance the cancer has metastasized into my lungs.  I am even aware of the fact that my fucking platelets are in the 30's and you people can't seem to figure out what to do about it in order to treat me for the very real cancer that's taking over my body.  She just smiles and says, "there you are, I thought we lost you for a moment"  Meanwhile, I have two screaming babies that are over being quiet and at a doctors office and just want to scream and run through the halls naked! I finally say "are we done here?"  I know she means well and part of her care for me is to treat my mental status, but today is just not the day for this horseshit. 

 

Driving home from my appointment I start thinking about everything.  When I say my emotions are running high I mean high.  I am so frustrated with EVERYTHING! I don't know which way to turn, which way is up?  Life is just so complicated right now.  I am the type of person to hold everything in.  I don't express much of my emotions very often.  However, today is just one of those days where I have to get it all out.  I have been crying for a few hours now.  I am frustrated at being a cancer patient.  I hate cancer and what it has done to my body.  I hate all the medicine and vitamins I am having to take to function on a daily basis.  My platelets being 26 today, really just pisses me right the  fuck off.  Now I have to get a blood transfusion, possible bone marrow biopsy and they might not let me travel to Chicago if my platelets are still this low.  FORGET THIS! This is bullshit!  Why do I have the be the mystery case?  Why can't for one stupid day something go right?  Why can't the doctors that go to school for 8+ years figure out what is causing my platelets to tank and stay tanked?Do you know how irritating it is to get a phone call every single week "hi Tanya, it's me your body, making life that much harder, Platelets 20's."  FORGET THIS AND FORGET YOU CANCER!  Forget all of this! It's MY BODY, not YOURS!  I will not let you take over MY BODY.  I will fight you tooth and nail and I will give you one hell of a run for your money. 

 

Mostly I miss being ME. 

Being seen for just who I am...ME.  Nothing more, nothing less.  Just ME. 

I hate what cancer takes away from you.  It takes away the ability to lead a normal life.  It tries to take you health, your body, your mind, your spirit and your hair.  I really freaking miss my long beautiful hair.  I will NEVER get over the fact that I have this short ugly pixie bullshit.  It takes EVERYTHING from you.  It sucks and sucks and sucks until there is nothing left.  I am no longer Tanya, Tata, TRizzle, T, Babe, Brat, TMoney, T Nasty, Teetos, Tay Tay, or any other nickname you all have for me.  I am simply a cancer patient.  Most of all cancer takes away the small things we take for granted every day.  What I wouldn't give to be able to work a 40 hour work week at my job.  As much as I hated that job, I would give anything to be able to clock in at 8am and out at 430pm.  A paycheck.  I haven't gotten a paycheck in over two months.  Cancer is expensive too.  Or just to simply have a conversation with anyone that doesn't revolve around my diagnosis.  I would give anything to be able to just have my old life back.  I never understood when and good friend of mine told me "it will try and take everything from you, don't let it.  It will change the person you are, you will never be the same as you are now" Going through this I didn't understand what she was talking about.  I didn't know it would impact my life THIS much.  I mean I knew, but didn't if that makes sense.  I didn't know it would change my whole life and every aspect in it.  Down to the very last detail.  My life, my whole life...cancer has taken over.  It's everywhere.  In my dreams, my body, my mind, on the minds of my loved ones.  It's in everything I do.  I eat to starve the cancer.  I exercise to strangle the cancer.  Instead of the news "it's shrinking", I get "it's gotten bigger"  Instead of normal trips to the doctor, I get check ups once a month.  Blood work every week.  High blood pressure.  Chemotherapy drugs that make you wish you were dead just so the discomfort would go away.  Radiation Therapy with side effects you will have the rest of your life. 

 

Today Breckin started crying at the doctors office.  He said "it's scary Tata" to him I put on my brave face, a smile and with tears in my eyes I said "it's not scary buddy, Tata is going to be just fine.  I promise" I can make this promise to him, one of my best friends.  I will be OK.  After all I won't break a promise to him.  I will be around for him throughout his whole life.  He can count on that.  There is still so much I have to do in my life.  I want to run a marathon.  I want to have babies of my own some day.  I want to get married to the man I love.  I want to see my beautiful nieces and nephew develop into amazing individuals (they are well on their way).  I want to grow old.  That's just the tip of the iceberg.  As much as cancer has taken away from me, it has given just a little bit in return.  It has taught me to be thankful.  Thankful for the time I have with each one of you.  For the memories I am making.  All the time I get to spend with Breckin and Ella all day every day, wouldn't change that for the world.  Thankful I have an amazing support system that would do anything for me at the drop of a hat.  Thankful that the good Lord is present in my life.

 

 Today WAS an emotionally for me.  It reminds me I am still human and I shouldn't keep it all in for so long before I just BLOW! That no matter how strong I think I am, I am not strong enough to do this  on my own.  Thank you again for all the love and support you all have shown me throughout my last 8 months.  I'm still going strong.

Tanya



CHICAGO...

I've been needing to post about Chicago for awhile now...at least a few days. 

However, I just haven't had time and I have been a little under the weather since Friday.  I think I might have the touch of a stomach bug or the stomach flu or something awful.  Whatever it is, I think the course has been ran and you need to move onto someone else.  Four days is TOO long to feel this crummy. 

 

ANYWAYS........

 

Chicago! :)  We are all set up to fly out on 04.28.13 @ 915am and will arrive in Chicago about 245pm.  We will have some free time to see some sights and settle in before the big appointment.  My first appointment won't be until 1145am on Monday.   They are so organized it's amazing.  I got my flight information and like 10 pages of information.  Including a daily schedule down to the minute of when and where and who I'll be meeting with.

 

  1145am: Nurse Navigator Daily Connect

1200pm Patient Registration

1245pm Patient Escort

100pm Nurse Assessment

130pm Medical Oncology Consultation

230pm Natruropathic Medicine Consultation

300pm Nutrition Consultation

330pm Care Management Consultation

 

This is the first day.  It will be a long day! Full of a lot of information and I am sure my head will be spinning! I am going to bring a notebook and take notes.  I have a feeling that is the only way I am going to make it through these 5 days. I am not even sure what to expect.  I am excited and so nervous at the same time.  Each day I will check in with the Nurse Navigator and she will give me my schedule for the day and take me where I need to go.  The nice thing is I will be in one room the whole day and the doctors will come to me.  I won't have to worry about finding the right office and getting there on time.  A HUGE change in pace from what I am use to.  I am not sure when we will return as my flight home hasn't been booked yet, It won't be booked until the day before or the day we come home.  I do know we will be there until at least Thursday.  Depending on when my treatment will start and how soon after my consultation ends will depend on if I come home at all or if I stay up there through my first treatment. 

 

Scott is really worried about me having to go through treatment alone.  There will be times we don't have the money for him to fly up with me or the time off of work for him to be with me while I do my treatment.  I assure him I will make do and it will only be a few days.  He worries about me traveling to and from Chicago and having low levels with chemo.  I tell him I will use hand sanitizer and gloves if I have to with my masks! I will make do.  People travel all the time with cancer and low levels.  I think he is nervous and is trying to find every reason to stay home.  Ha ha he was so ready to go but I think the "unknown" is what gets us every time.  It's the nature of the beast unfortunately.  This cancer is so unpredictable.  One minute you are cancer free not a trace in your body and the next you might have mets in your lungs. 

 

They tell me to pack enough for a few weeks.  Also that it will be cold!!!  It's like mid 40's there this week! I am going to freeze my buns off.  I will be packing winter clothes.  Ha ha We have a friend that is from Chicago and has given us a list of things we must see and do while we are there...3 of them are to eat Pizza at very specific places! Ha ha apparently the pizza here is incredible! I however won't get the chance to enjoy a real Chicago style pizza.  Not this trip anyways.  I look forward to the rest of the list of thing to see and do in Chicago. 

 

We have so much to do in preparation for this trip.  Our Sophia just had knee surgery last Thursday and is in a cast for two weeks.  We will need to find something to do with our girls while we are gone.  Any takers??  Ha ha I was going to take them to Brittany's, as she has offered and it's just next door, however she has two very rambunctious dogs and they all love to play together, this however won't work with Sophia's knee.  She is on restricted movement for 5 weeks post surgery.  She is to be walked on a leash when she needs to go out.  On top of her follow up that is schedule about the same time we leave.  Why must everything come all at once? 

 

I will somehow to figure it all out. 

 

Tanya

 



RELAY FOR LIFE...

RELAY FOR LIFE is JUST AROUND THE CORNER!!!

The BIG event is in less than two weeks.  I can't even begin to tell you all how EXCITED I am to do this event! :)

 

Relay starts on Saturday May 4th @ 6pm! At A.T Stills University in Gilbert.  This is about Higley and Baseline area.  It will start at 6pm, and will go all evening to 530am Sunday May 5th.  We will camp at the field and will have many events and fundraisers all throughout the night.  

Including but not limited to::

 

Survivors Lap

Luminaries Ceremony

Fight Back Ceremony

History of Relay for Life

Organized, overnight community fundraising walk

Members of each team take turns walking around the track

Food, games and activities provide entertainment and build camaraderie

Family-friendly environment for the entire community

 

Each team will have a game or activity at their camp for other teams to stop and at participate.  Our camp activity will be COSMIC BOWLING!!  How fun will this be! And since it will be DARK OUT we will have REAL Cosmic Bowling! :) Glow in the dark PINS!!! :) EVEN MUSIC!! 

 

Since we are camping at the field, it would only be right we get to decorate our CAMPSITE...Our Theme is "RARE BUT THERE" Since my Small Cell Cervical Cancer is "RARE, BUT THERE" its only fitting! :) We will use BLACK, WHITE AND TEAL streamers and decorated chonies to deck out our campsite! :) If we WIN the decorating contest out of all the camps we will win FREE PIZZA! (however I can't eat that, but my team members can)

 

I want to send out a special THANK YOU to those of my strongest supporters!! THANK YOU for signing up and participating in the Relay.  THANK YOU for taking time out of your busy lives to make a difference!! 

 

Gretchen Allen

Ashley Brown

Katrina Johnson

James Schumacher

Vickie Johnson

Scott Larson

Brittany Winkler

Amanda Frantz

Jesse Frantz

Cathi Bell

Brinley Johnson

Ella Brown

Breckin Brown

Paula Williams

BriAnne Lundell

Georgina Gonzalez

Audrey Frantz

 

 

I am making Tanks Tops for our team SHIRTS!! They will be BLACK wife beater type tanks, from Wal-Mart Men's sizes...They will be so FITTING...and say "F*CK CANCER"

(Kids shirts will say something different)

 I will have those to hand out to everyone PRIOR to the event! :) Please remember to wear them on RELAY DAY! 

 

For those of you camping at the event...we will have a LARGE pop up with Screens.  Please feel free to bring any camping supplies:: I think we will just put all our blankets and pillows inside the pop up for a large bed for all to rest!

 

Other items to bring are::

 

 snacks, water, food, pillows, blankets, Radio, card games, folding chairs, tables,

Extra shoes, flip flops, jackets, Long sleeved shirt, yoga pants, Cooler, wagon,

flashlight, sunscreen, cameras, hat, bug repellent, matches, umbrella, hammer, scissors, and tape for random tasks...

 

PLEASE leave all Alcohol, Tobacco and Pets at home. (service dogs allowed)

We will get out campsite map and a schedule of all activities at Relay. 

 

AGAIN, I can NOT wait to do this event! :) I will be in touch with each and every one of you participating on my team and let you know in further detail what I will be providing and what you will need to provide on your own, Where to meet and when to meet.  :)

 

For more information if you need it, please text or call me at 480.272.0386 email at tanya.johnson17.tj@gmail.com or visit the website at  www.relayforlife.org

 

Can't wait to RELAY!!

 

Tanya



THANK YOU...THANK YOU...THANK YOU!!!

I wanted to send out a little THANK YOU, to my Frantz Family Members in Colorado!! :)

You guys are some of my biggest supporters...

 

UNCLE PAT::

I wanted to say THANK YOU, for always sending me motivating, Inspirational and most of ALL GOD's word!  It never fails when I get your text messages it's always when I need it the most; that extra little push that I CAN DO IT!!  Or just that little something to get me going for the day.  Today's inspiring message came about 5am Arizona time and I was already at the gym but it was just so fitting I had to share!!  "Do you believe I can make you see?" "Yes Lord" They told him, "We Do" Then he touched their eyes and said "because of your faith it will happen" (Matthew 9:28, 29) What you believe has a much greater impact on your life than what anybody else believes.  You Faith will help you overcome your obstacles.  Become what you BELIEVE! What are you believing?" I loved getting this message first thing this morning! I wanted to say THANK YOU again Uncle Pat for always being in my corner and always thinking of me! It means the world to me and I can't tell you how much I love you! :) I do BELIEVE I have already beat this cancer and I believe I am cancer free.  The PET Scan ain't got nothing on me! :)

 

 

I have changed my lifestyle and I am working out two a days now...I know I will be in great shape and this is a long term lifestyle change. I will NOT go back into my old habits. :) I am working on four weeks of clean raw eating! I just added in the fitness portion to help "trim the fat"! :) If I can do it ANYONE can do it! :) I encourage you all to make a lifestyle change and get healthy!! 

 

 

 

(This is on my phone background for daily inspiration)

 

 

AUNT LORI::

To you my dear I must say thank you for all the medical advice!!  :) I am so THANKFUL you have been there to answer any of my questions I might have or give me any sort of guidance since day one.  You have been in my corner fighting along side of me and to you I will ever be so grateful! :) I know if I needed anything you are always there.  I love the text message we send back and forth and I am so thankful to have you in my life.  Thank you so much for all you do for me and continue to do for me.  It doesn't go unnoticed and its much appreciated.

 

 

I LOVE YOU GUYS more than words can say and I miss you all like crazy! I hope I get to see you all again soon! Lots of love and hugs to you and the kids!!! :)

 

TANYA

 



MIRACLES...

MIRACLES HAPPEN...

 

We don't know how or why or even when, but Miracles happen every day in many different shapes and forms. 

 

A miracle has happened to me today!!! :) GOD IS GOOD!!!

 

Scott and I have been talking about getting a second opinion and I wasn't sure it was the right choice for me.  I was pushing back against his suggestion and hard.  He called me on Saturday and told me he took it upon himself to call The Cancer Treatment Centers of America (CTCA).  He spoke to the ever fabulous Jennifer.  She answered all his questions and even remembered who he was when I called back days later to get the same information for myself.  I spent about 30-45 minutes on the phone with her.  I gave her all my insurance information and she was going to look into my insurance and see if it was even possible from an insurance stand point for me to be seen at CTCA.  She called me back later on that afternoon and told me unfortunately I wasn't able to use my insurance and be seen at a Phoenix facility.  We were all three bummed of course.  She suggested I call back once it rolls to LTD in a few weeks and see if I might be able to use my COBRA.  I assured her I would.

I was outside playing with the kids when I got a phone call from Jennifer today.  She was calling with exciting news!!! 

 

She told me after I hung up with her she just knew there had to be something she could do for me.  So she kept checking and talking to everyone she could think of and what she came up with is this::

• I can't be seen at a Phoenix facility because my insurance won't approve for me to be seen out of network in the area, when there is many in-network physicians I can see and it be covered.
 
• I can be seen at a facility in another STATE and it be approved using my out of network benefits. 
• I have met my out of pocket detectable already and my In-Network has been met as well.  So there should be no out of pocket to be seen in Chicago. 

So that being said she transferred me to speak to a patient advocate.  His name is Marty Marks.  He is a very knowledgeable person in his line of work.  He answered all my questions and went above and beyond in my eyes.  I thank him very much! :) What Marty has informed me is the following...I have condensed to bullet points the gist of my 1 1/2 long conversation with Marty. 

1. CTCA will PAY for me and a loved one to FLY to CHICAGO for a consultation with CTCA.
2. I Will pay a FLAT rate of $75.00 for 6 day stay at a Marriott close to the CTCA Facility.
3. After the 6 days if need be and I am still there it's an additional $40.00 a night.
4. If I am unable to pay this hotel rate they will work out a payment plan to fit my needs.
5. The Consultation takes anywhere from 5-7 days. 
6. They are equip for 100 inpatient rooms and this is an option as well if need be to avoid the hotel charge.
7. I will have my own "treatment room" in which I will stay in while at CTCA for the consultation and the specialists will come to this room to see me and my loved one. 
8. Once I have seen all the physicians and they will then meet for a round table and come up with a treatment plan. 
9. Once the Treatment plan is in place I will then be set up to start treatment (TBA).
10. Each visit with each physician will be anywhere from an hour to an hour and a half. 
11. Once the treatment starts (TBA) they will pay for the patient to fly out to Chicago for treatment.  The loved one will have to make and pay for their own accommodations to fly to and from Chicago if they want to go.
12. They will pick us up from the airport and will provide any transportation to anywhere we might need to go while we are there. 
13. The provide meals as well for all Organic Gourmet based foods.

I will fill out the paperwork Marty has emailed me and email it back to him.  Once this is complete he will then start the process.  I don't know when I will be leaving or who is going with me.  It will all depend on if Scott has the time off work and able to go.  Obviously we will be gone for at least a week if not longer.  I am so excited and I feel really good about this.  As soon as I know more information I will keep you informed. A lot goes in to getting prepared for this HUGE step. 

 

I am so thankful The Lord has taken us down this path.  :)

 

Tanya

 



UGH...

It's been awhile huh?

Sorry about that.  I am watching my niece and nephew during the day (my new job) and I play all day I forget to update my blog! ha ha

Literally this has taken me two days to blog and post! So ENJOY! Ha ha

 

Where do I start...

I had an appointment with a Naturopathic Specialist on Monday (4.1.13) Dr. Daniel Rubin. He is nothing short of FANTASTIC! I am so thankful Marsha (Scott's Mom) recommended him to me.  I spent about an hour an a half in his office on Monday and we just went over all my medical history for the past several months.  He was excited I came in to see him as he is very interested in anything dealing with the neuroendocrine system and does a lot of studies and research.   Since my cancer is neuroendocine cervical cancer he was excited to get to treat me.  He had so much to say it was hard to get it all in at that one visit.  Somehow we managed.

He started off with a very valid point.  Since Dr. Bibb (which is a friend of his) is doing labs after my steroids really that's the only plan as of right now.  They don't have anything else "in the works" as far as treating me.  Until my platelets are up to normal I am just a "sitting duck".  So why not see Dr. Rubin?  Why not have him do all that he can, while my medical oncologist is doing nothing?  I agree with him.  What harm is it?  So we started off with blood work, and LOTS of it!!!!!  I had about 13 tubes of blood drawn by the time it was all said and done.  He is checking all my vitamin levels for starters.  He wanted to start me on Vitamin C infusions right away, and my first infusion was 04.03.13.  It went as to be expected. I didn't notice any difference other than lots of energy shortly after the infusion.  Which is normal.  I will get these twice a week for starters at 25 grams each, and work my way up to 75 grams.  ON top of this he has me taking 3000 mg of oral vitamin c.  Yesterday when I was in the office getting my infusion he came in to tell me some of my labs were back and I am deficient in vitamin D.  Mine is at 19, and normal is 40 or higher.  He added Vitamin D drops to my daily regimen.  I take 5 drops every day under the tongue and it will bring my vitamin D back to normal ranges.  I will be on this until further notice.  He hadn't gotten my other labs back yet, so I will get those when I have my second infusion on Monday. 

I got a call from Dr. Zaky today (04.05.13) and we have a plan going forward.  FINALLY...we have a plan.  So since we still don't know what is going on with the lungs yet but I do have an active tumor in my pelvis that needs treatment and ASAP.  So I see her on Monday for my SIMS mapping to get me ready for Radiation.  I am still undecided if radiation is the way to go at this time, but I will let her do her thing and decide when the time comes on Monday.  She did say I will get a least 15 more rounds of radiation (which is 15 business days) at 30 minutes each.  They will target the tumor specifically.  However I will not be able to do the Brachytherapy that was recommended last time, due to the fact that my tumor is too big.  It will be normal radiation like I had before.  I have become very hesitant to trust my doctors as they have given me some misguided information.  So I am still not sure I want radiation.  I will continue to pray about it. 

The BEST news is I got my blood work results Tuesday and my platelets are up to somewhat normal ranges! They were 80,000 on Tuesday.  Again normal is 140 or higher.  Which means the steroids Dr. Bibb put me on are working.  I got more labs drawn today to make sure they are going up and staying up.  So I should have those this afternoon or Monday.  While I was at the Oncology office today I get called back for my labs.  The lady draws my labs and tells me I have an appointment directly following.  I ask her for what since I wasn't aware I had any appointments.  She couldn't tell me, or didn't know.  So she takes me to another waiting room and tells me someone will be right with me.  After a few minutes of waiting a girl comes and asks if I am ready for my teaching.  UM...WHAT teaching?  She says for your Lovenox injections.  AGAIN WHAT LOVENOX INJECTIONS?  So as we are walking over to the room we are now standing in the infusion room with many patients around and many office staff.  The RN says "you have a blood clot" AGAIN WHAT?  How in the world did I get a blood clot?  I tell her my Platelets have been 34 or lower for the last 4 months, They just barley came up to 80 this week, my blood still isn't clotting on its own, why would I have a blood clot and why would I need lovenox????????  Needless to say I went off on them and stormed out.  I have a phone call into the Practice Manager.  So we will see what comes of this.  If I was any other patient, or didn't know what Lovenox was for and let them give me Lovenox I would have bled out and died!  So thank goodness for being on top of it!

 

 

Tanya