Returning to normal...

We are back from Chicago, The Relay for Life is done. 

I want to take this time to THANK the following people:: These very special individuals are near and dear to my heart.  If it wasn't for each of you this relay wouldn't have been possible.   I would have been walking the full 12 hours myself! :) So THANK YOU FOR PARTICIPATING!

 

Scott Larson

Vickie Johnson

Bannon Johnson

Katrina Johnson

Brinley Johnson

Breckin Brown

Ella Brown

Ashley Brown

Dustin Brown

Marsha Larson

Cathi Bell

Jen Pelletier

Matt Frantz

 

Audrey Frantz

Jesse Frantz

Amanda Frantz

Tammy Orletsky

Bri-Anne Lundell

Che Kelley

Malisa Caldwell

Jensen Caldwell

Hailee Caldwell

Madison Caldwell

Carson Caldwell

Dorothy Cook

Brittany Ford

Britney Schuster

Nathan Schuster

Paula Williams

 

 I want to give an extra special THANK YOU to my mom for taking over while I was in Chicago and agreeing to take on the Relay had I not made it back in time. I really have the most amazing mother in the world. She continues to do things for me day in and day out. She is what all mothers should be. Endless amounts of love.  THANK YOU MOM!  :)

I have highlighted all the RELAY LIFERS as I like to call em...these are the true hardcore team members that stayed ALL NIGHT...From 5pm Saturday until 6am on Sunday.  We were all crazy tired, seeing things, even saying things like "I only have this string to keep me warm and my suitcase is COLD" ha ha 

I have never done a Relay for Life event before.  It was such an amazing experience.  We took THIRD in teams that raised the most amount of money!  :) We raised $3500.00!!!  That's just AWESOME!!  I am so excited I could contribute SOMETHING to cancer research.  I can only imagine had I not had so much going on I would have been able to dedicate more of my time to the Relay we would have been first place! There is always next year and that will be my goal. :)  Our *STRENGTH*LOVE*COURAGE*

team was the ONLY team that actually walked the WHOLE ENTIRE 12 HOURS...We ended up with about 8 people that stayed all night out of our whole team, in the early morning hours it was tuff and touch and go there for awhile, but we made it!!!

I would like to ask those of you that haven't done a Relay for Life event before or even those of you that did the relay this year for the first time but were unable to stay the whole night to consider doing a Relay for Life event in the future, and dedicate your time.  I know 12 hours is a lot to ask of one single person.  I now you all have many things going on in your lives and 12 hours is just too much to ask of you.  Please keep in mind, we cancer patients don't have the choice to just STOP fighting.  Just STOP walking, just STOP all together, or cancer wins.  Relay for Life is an exhausting event, I am not going to lie, but it gives you just a SMALL glimpse into how EXHAUSTING a day in the life of a cancer patient can be.  The fights, struggles, exhaustion, weakness, the list goes on, but I promise YOU won't REGRET it.  Keep it in mind for next year.  I will be recruiting those HARDCORE lifers...you KNOW who you are and I THANK YOU WITH ALL MY BEING for helping me fight back against cancer. 

Now on to doctors appointments, IVIG infusions, Bone Marrow biopsies and labs.

Today, I needed to call LTD, clean my house and find a place for all the Relay for Life crap, pay bills, make doctor appointments, Schedule the Bone Marrow biopsy, and for the IVIG.  So much to do and I don't know where to start.  First thing is first, I called LTD.  I still haven't heard from LTD on if I was approved for not.  This is going on three months without approval.  Which means three months without pay.  I called Rose bright and early and got the GREAT NEWS, I was APPROVED!!   Even better news she tells me "did you not get the check?" Um...what check?? Ha Rose told me I should have a check in the mail, as they sent it out almost two weeks ago!  WOW!!  So I have been approved for TWO WEEKS, and nobody even called me to tell me I was approved!  REAL NICE! So thankful I have my money!  So the kids and I quick take a trip to the mailboxes and sure enough there is a check in the mail!  Well I guess lesson learned I need to check my mail more often! Would have been handy while we were out of town.  I finally got my house cleaned.  Took me all day to do it, but I finally got it all done...My house is over run my Relay for Life crap! If any of you need or want a Relay Tee I have some is all sizes but Large. These are the shirts that we were given at the Relay, not the ones I made...  :)

I got my doctor appointments all set up.  I have labs and IVIG tomorrow and Wednesday both days at 10am at Dr. Borst's office.  I still am not able to start my new oral chemo until Dr. Williams (my new gyn/onc) talks with Dr. Borst.  I have been harping on Michele since Thursday and she says they still haven't touched base.  I am starting to wonder if this co-management health care is going to be for me.  I don't want to be spending all the time on the phone making sure this or that was done by this doctor or whatever.  I say my prayers it all works out.  For now I am still waiting for this conversation to happen so I can get started on my new chemo meds. Sooner rather than later would be nice. 

I am scheduled for my BMBX on this Friday at 8am at Banner Desert.  It will be about a 2 hour procedure.  I had hopes to go to Show Low this weekend for Mother's Day and I still hope that is possible.  Banner Desert does tell me this shouldn't be an issue, but I might have to go up Saturday for the day instead of Friday.  The BMBX is going to tell us if I have any cancer in the bone.  My PET SCAN was clear of anything in the bone, and my labs don't indicate bone cancer, but we have to rule this out before we can fully agree it's ITP. 

I have decided with the news of my scans, and that CTCA is sure the cancer has metastasized to the lungs I am going to opt NOT to do the lung biopsy that Dr. Bibb is wanting to do.  The chemo I am going to be taking is going to effect the lungs and the cancer anywhere in my body, there is no reason for me to do a biopsy.  I just need to get the ITP under control and the IVIG will help with that. This week is going to be a long week.  I was so looking forward to just hanging out with Breckin and Ella this week.  That's out.  I'll only see them Monday and Thursday.  POOP!  Tata isn't happy about that.

There is always next week right! :)

 

Tanya

FINAL CTCA DAY...

Today was our last and finally consultation day here at CTCA. 

My day started about 8am Illinois time and we are still going strong.  Its been a long day but not nearly as long and tiring as yesterday (for whatever reason) We got a lot of information and a lot of our questions answered.  A lot of NEW information as well.  Some bad and a lot good. 

 

Let's see where to start with today...

My first appointment for the day was at 10:30am with Dr. Williams the Oncologist, followed by 11:00am with Naturopathic Medicine, 11:30am was Nutrition, 12pm was case management, 1pm was tying up all lose ends before we leave for home.  Dr. Williams...she is first and foremost important. She gave us the run down of labs results, scan results and her treatment plan.  On paper (IE labs) I look like a very healthy individual.  On films (IE scans) I am a little bit of a wreck.  Good thing we do both of these hand in hand.  Labs all came back good.  My levels are all within the right ranges, with no cancer markers lighting up.  That's GREAT news.  My cholesterol was a little elevated, but they insure me this is nothing to worry about as my labs were drawn late in the afternoon after I had eaten.  Plus after talking to the Nutritionist she assures me I am not eating any foods I should be staying away from to elevate it.  My platelets were 111 on Monday, which is GREAT, but not so great.  They haven't been THIS high since November last year.  Why is that not great, the reason for them being so high is due to the steroids Dr. Bibb has me on.  So that tells us I do in fact have ITP and that needs to be addressed and treated ASAP.  I am thankful my labs are all up and in normal ranges.  This helps fighting this disease a little easier. EKG that was done on Monday was NORMAL as well!!! More great news!!!! :)  ON to my SCANS...The ones we have been waiting for so anxiously.  First was the Brain MRI.  That came back CLEAR...MORE GREAT NEWS...My brain has NO mets! :) Thank you Lord! Now we have a baseline to go off of for future scans of my brain.  CT SCAN of the CHEST, ABDOMEN AND PELVIS...now here comes the kicker...BRACE yourselves.  They found changes in my CT Scan from my last CT Scan back home.  First change is there is now a spot on my right Adrenal Gland (which sits on top of the kidney).  The left adrenal gland looks and appears to have no tumors or masses.  Both kidney are clear and have no signs of hydronephrosis or metastatic disease.  Gallbladder is absent, Pancreas is normal and spleen are all normal.  Which is more GREAT NEWS!  The CT scan does mention "small ill-defined hypodensity in the periphery of the right lobe of the liver.  They should be followed."  So we will continue scans to watch this area for metastatic disease.  As for the pelvis, there are several masses.  As my new CT Scan shows, I have currently three tumors/masses in my pelvic region (where the cervix was).  Also says "nodular lesions also seen in the area of the vaginal cuff including the cul-de-sac."

Treatment:: NO RADIATION. 

The reason for this is my body has already gotten it's maximum dose of radiation, especially to the pelvic region.  If we do anymore radiation to this area there is a chance of doing more damage than good.  CHEMOTHERAPY is my treatment of choice.  I can't tell you how many rounds, as we don't know.  The chemo drug they are putting me on is called Temodar.  It is an oral medication I take everyday for 21 days and then break for 7 days and then start it back again for 21 days.  It's a low dose chemo drug, but can be increased to high amounts if my body can handle it.  We will start the dosing out at 140mg a day and increase from there if need be.  The main side effects are:: Fever, chills, cough, sore throat, body aches, seizures, severe nausea or vomiting, sores or white patches on your lips, mouth or throat, usual bleeding, bruising or weakness.  The most common in patients taking this medication is nausea.  I have gotten scripts for this in case it happens and let's face it I am an old pro with handling nausea! :) The one thing this medication WON'T do is make me lose my hair! :) That's MORE GREAT NEWS! I might have some thinning, but it won't fall out like it did this last time. 

I will still continue to get regular labs drawn weekly.  I will follow up with CTCA here in Zion every two months.  At these visits we will increase or decrease my medication, do scans and do all my follow up care at this time.  Dr. Williams said normally I would follow up every 3 months, but she doesn't want me waiting that long between visits to make sure it's working.  This medication WILL shrink the tumor to NOTHING! There is only three reasons why I would stop the Temodar, One: If it shrinks the cancer and I have no cancer left in my body.  (WHICH IS WHAT WILL HAPPEN) Two: If the side effects are too harsh on my system and we have to change to another medication.  Or three: The medication isn't doing what it's suppose to by shrinking the tumors. (which isn't going to happen).  Otherwise I will stay on this medication until all the cancer is gone from my body...which could be any time.   

 

So this is all the news this whole week has been building up to! It's a lot to take in, especially with having more cancer is places we didn't know I had.  Strangely I feel at ease,  I feel like a huge weight has been lifted from my shoulders and I feel God's guidance.  Since before coming out here Scott and I have had it weighing heavily on us doing treatment in another state.  Having to travel, being away from home etc.  I prayed last night that if this was the path I was to be down, where I was going to get batter, that God would give me a sign.  I would say he has given me the biggest sign there is.  He has let it be possible for me to still be seen at CTCA, but get treatment at home!   I can't thank him enough for the answered prayers.  God Is GOOD! 

 

We are all set to fly home! I can't wait.  Before we do this, we are taking ONE full day to spend in the City...We are going to see everything Chicago has to offer!!!  Which means we will see the SHEDD Aquarium, "The Bean", possibly eat CHICAGO STYLE PIZZA, Get some Sea Food and see all the sites!  Tomorrow will be a busy day of sight seeing and train rides, and I CAN'T STINKING WAIT!  This has been a wonderful experience and I am so thankful to Scott for being here every step of the way.  I know how stressful it is on him (as he worries way too much) and I know I am NOT the easiest person to be around ALL THE TIME...especially with my mood swings.  Sorry babe.  I want to thank my family for being there throughout this whole process and understanding, loving and supporting me anyways! :) It's a long road, but I know we will pull through it. 

We are all survivors! :)

We will arrive back home in Arizona about 10:20am on Saturday, JUST IN TIME...to take a quick nap and get things going for THE RELAY FOR LIFE!!  I am SO excited to be able to make this event, as I have worked so hard on making it happen and I would just be so sad if I couldn't make it.  It will be a long weekend for Scott and I, I am sure of it!  We will be up about 2:30am on Saturday Morning and will be going non-stop until about 7am on Sunday.  IF I CAN DO IT WHILE FIGHTING CANCER, YOU ALL CAN DO IT TOO...

 

SO I EXPECT YOU TO BE THERE, WITH BELLS AND WHISTLES ON, and I expect to make it the best Relay! :) 

 

I will see you all Saturday afternoon REMEMBER camp set up time is 3pm-5pm, so you WILL need to be there between these hours to get camp set up as Relay starts promptly at 6pm!  There is opening ceremony's so PLEASE make sure to be at Relay between 3pm-5pm.  If you are unable to make it for ANY reason, please call, text, or email me so I can make the necessary changes to our roster.

 

Thank you for supporting! See you all Saturday!!

Tanya

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