One Long Day

I'm not going to lie...the last couple of weeks have been emotionally, mentally and physically difficult.  When things aren't going so great it is easy to get discouraged. I try to stay positive and brave, but I'll be honest, some days are scary and downright terrifiying.  I love this picture and saying.  It gives me strength and courage when things are difficult.

Knowing that my disease is progressing has been difficult to accept.  I thought my treatment was done with my last radiation treatment in November of 2013.  When it came back in November of 2015 I think for a while I was in shock.  I could not have made it through the last several months without the amazing outpouring of love, support, prayers, small acts of kindness, meals, treats, texts, emails, visits, etc from all of you - from my family, to my friends/ward in AZ to the 2 wards/friends in Bountiful and my friends/coworkers/families of patients from Primary Children's,my friends/coworkers at the Bountiful Clinic, and my wonderful chiropractor Bryce Crowley and other amazing practitioners at Advanced Health Clinic.  Just when I start to spiral downwards and feel alone there is always someone or multiple people who reach out and let me know how much they care about me and my family. It is very humbling to have this kind of support - I feel your love and prayers!! I couldn't do this without so much love and support.
Earlier this week my sweet friend Carrie Bettis from Primary Children's asked if we could meet for dinner on Wednesday at Bombay House.  I absolutely love Indian food, but none of my family likes it so I rarely eat it.  I was excited to meet for yummy dinner and to visit with my friend the night before I was to get my port placed.  She met me at the front door and we went in and there was a table of so many of my friends from PCH that I hadn't seen for a while.  I miss my job so much there and miss the ladies I worked with.  I was so surprised and shocked and so happy they were there that I couldn't stop the tears from flowing.  It was so good to catch up with everyone and just sit with them all again.  It was so touching that they would all show up for me.  I was so worried about starting chemo and getting my port placed that this was exactly what my heart and soul needed.  Thank you Carrie for organizing the get together.

All these friends of mine have hearts of gold - they give their all to kids who have cancer day in and day out.  They are true examples of compassion, kindness, love, hope and excellence!  I love every single one of them!! Amy Pasmann is missing from these pictures - I don't know how to photoshop her in but she left before these were taken. :)

Today I had my port-a-cath placed.  In case you don't know what this is, it is an implanted device that has tubing tunneled under the skin and is inserted into your sublclavian vein that dumps right into the tip of your heart.  I had one with my first treatment - my cute friend Paige took me to get it the first time in 2013 while being sicker than a dog...this tells you how awesome she is.  This is what a port looks like before insertion:

Power Port - allows fluids/contrast for scans to be pushed at a higher pressure.

This is the needle that accessed the port when it is under the skin.

This is Paige comforting me before getting my port the first time.

This is Paige comforting me after the surgery when I was extremely nauseated!!

This is what it looks like anatomically.  This is done under continuous xray so they can see that the catheter is placed correctly. It is sore, but it will be worth it.  My one and only arm they can use for blood draws and IV's has had enough.

So it was with mixed feelings that my port was put back in today to start IV chemo.  On one hand I was glad as my veins are hard to find for blood draws and IV's.  Sometimes it takes several sticks just to get a little blood.  I'm also glad to have it because it is safer to give chemo this way. On the other hand it just means that I'm going to be getting more harsh treatment.  ugh...

I started my morning at St. Marks Interventional radiology department.  My nurse was Serena and she was amazing - she got my IV on the first stick and was able to get all the labs drawn from it. She got me all prepped and ready for the procedure.  She then proceeded to talk about the sedation.  She let me know that since my lungs were already sketchy that they might not be able to sedate me all the way - I may be awake for the whole thing. ARE YOU KIDDING ME???!!!  I understand that they want me to keep breathing, but to be awake during this procedure was terrifying to me.  She said they would give me a little sedation at a time and see how it went. I suddenly wanted to bolt off the stretcher and make my way back home.  She was so understanding and calm and assured me they would do their best to make sure I was taken care of.  All of a sudden I just started saying a continuous prayer that lasted about 30 minutes.  I'll admit I was a little teary and it didn't help to look over at my mom and see her crying.  They wheeled me over to the procedure room and then I had to sit outside the room in the hall waiting for Dr. Carlisle who got called away to see an emergent patient.  It just made my anxiety increase.  What I would have given for some ativan, xanax, or valium...anything. They finally wheeled me in the room and I met the team - I'm not going to lie, they were awesome.  I let them know that Dr. Litton referred to them as the IR ninjas.  They all laughed and said the only thing ninja about them were their masks and joked about how they all better put on their masks.  I said what would be even funnier is if they all had the chewbacca mask on from the You tube chewbacca mom video.  Luckily they knew what I was talking about and thought it was funny.  It was a good way to break the ice and you always want a team working on you that is in a good mood for sure.  If you haven't watched the video and don't know what I'm talking about you can find it here. https://youtu.be/y3yRv5Jg5TI    They got me all prepped, draped and ready to go. I had a tent thing that was partially over my face so I couldn't see what was going on.  Dr. Carlisle came in and wanted to get started.  He saw my scar from my last port and he said "Have you already had a port?" I said "yes, with my last treatment."  He said "Well, that's not fair...I'm sorry we have to do this again." I, of course, had to agree. They gave me some meds and I could feel them a little bit - but I was wide awake.  They wanted to get started and since my breathing was ok - even though I was laying flat and starting to get a little panicky about it (but of course I didn't tell them that)  They gave me a little more. I remember the nurse telling me that Dr. Carlisle likes to use a lot of lidocaine and that it really burns.  I think I fell asleep during this part which was a blessing because I don't remember feeling any of it.  I did wake up while they were stitching me up and I could feel that - ouch, but it could have been a lot worse.  They left me accessed so I could get chemo and put the bulkiest dressing on it I could have ever seen.  When they took off all the drapes, I could finally see Dr. Carlisle.  He had the kindest eyes and took my hand and wished me all the best.  The whole team wished me well.  They were amazing!!

This is me on the way out of the hospital - what the crap is that dressing???  Obviously a nurse did not put this on. :)  Also, I don't think I could be more pale...I think a transfusion is in my future - maybe next week when my counts drop from the chemo.

After my port was placed I had an appointment with my Chiropractor, Dr. Crowley who is amazing and always fixes my neck and headaches...he seriously is the best - I need to get a picture with him.  I also saw Lisa who helps me with my lymphedema - she is wonderful.  We stopped and got a Keva Juice since I was starving and stopped by the house to change my oxygen tank before it ran out. Then it was off to see Dr. Litton - he of course was wonderful as always, explaining everything in detail and answering all my questions.  The best part was that I got several hugs out of him...they always make everything better. :)  Then he sent me back to get the chemo that nearly made me stop breathing. Like I explained in my last post it is different this time because it bound with protein.  He knew I was nervous about this and they don't usually premed for this chemo - but he was willing to give me a little dex and zofran to ease my mind.  I just love him. He sent me back to get hooked up and of all the nurses there, I got my favorite nurse Deann who saved my life last time - she of course remembered everything - even where I was sitting when it happened.  I have to say as a nurse myself - you don't forget those things.  She was wonderful - there were no problems and everything went smoothly.  She even commented on my horrific dressing and couldn't stand it, so she took it down and made it look pretty - a girl after my own heart. I would have done the same thing for my patient.

This is Deann...my favorite nurse and life saver

Hanging my premeds

Here is my Abraxane - it looks like they added lipids to it...but no...it's weird to get white chemo.

This is my mom...I now call her "Dr. Mom" as she has lots of medical advice for me (in a loving way) and is checking to see that I'm getting the right drugs...mind you she is a former teacher, principal and now is a literacy specialist. :) No medical background.  haha

Mom stayed with me the whole day and chauffeured me everywhere.  It can't be easy sitting and waiting for my stuff all day long.  She is a trooper.

Again - the before picture of my hideous dressing....

The after picture of the beautiful dressing change.  My port and the incision they made in my neck are really sore tonight - I don't remember it being this sore last time...

I have to thank all the people that helped out with me and my kids today.  Thank you to Jared Johnson for picking Dylan up for school and bringing him home! Thank you to Tricia Burrell for picking Maddie up for school and Jodi Holbrook who helped her with homework and brought her home - also for bringing me a much needed FIIZ!! That was lifesaving!!

This was called Timber and super delicious - it also made taking all my night meds so much easier!

A met a sweet gal - Amy Beebe at church.  I found out quickly that she was a nurse at the U working on 2 North where I worked long ago.  She knows my good friend Lisa Knapp - whom I love dearly.  She called me today and asked if she could come over for a minute.  She brought me my most favorite flowers out of her yard - peonies, coke and diet coke to make my 1/2 coke 1/2 diet coke concoction, Yummy chocolates and lip balm- something I go through quickly. We have become instant friends and I instantly love her! She was so thoughtful and kind.

Some of my favorite things!

My beautiful angel friend Renee Jenkins was so kind to bring over dinner.  It was so super yummy and thoughtful.  She is one of the kindest people I know.  She always knows how to lift my spirits.

YUM!!

I can't forget about my cute friends at the Bountiful clinic - LeEtta, Quincey and Dawn.  They constantly make me laugh and make sure I'm doing ok.  These ladies are amazing and I love them dearly!!  Also, my sweet boss Linda sent me home with a wonderful dinner on Monday - my kids ate it so quick I didn't have time for pictures.  Thank you Linda - it was so kind of you and super delicious!!

These autographs are going to be worth something!!

I love their sense of humor and the thoughtfulness in this gift.  I have to say the body butter smells delicious and I have used it every day since I got it. Thank you ladies, you are awesome!! :)

I guess that wraps it up for today - I don't mean to write such long posts but I guess I have a lot to say.  It was a long day today, but I made it through with a little help from my friends and family.

I love this "letter to cancer"

Even though my prognosis is not good, I'm still taking things one day at a time, still fighting, still hoping there is a cure right around the corner.  I'm not giving up, I have faith that this newly added chemo will get my lungs under control and I will be able to breathe and continue with the things I'm here to do on this earth.

There is always hope!!!

Be brave, my heart. Have courage, my soul,

Tiffany







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