Tuesday, September 13, 2016

Up To This Point

Catching Up!

I have to do a bunch to catch the blog up.  I am trying to use this as a journal so I can print it into a book later.  I have done all my updates via the Support Page on Facebook. :/



Chemo 2 

Wednesday August 10th

It definitely went quicker this time because I didn't have a ton of testing to do before hand.  Erin got me to the hospital and as soon as we hit the wing it reeked of urine.  Aghhh! I don't do well with smells. Ew!  Even the nurses that take us up apologize about the smell.  As someone who has worked in the flooring industry maybe they should try cleaning the bathroom grout and having it sealed! YUCK!!!!!

I can't say that my hospital stays are bad in any sort of way except for the stench when I get there.  I must eventually become immune to it because I can't smell it after a while.  Until I get home and everything in my suitcase smells like hospital.

Hospital food isn't too bad either except just thinking about it makes me nauseous.  {Just writing this makes me nauseous}  The first time I was in the hospital and I had to order food I was already nauseous from a migraine.  I think that triggered a reaction in my brain that food and hospital equals puke.  The hospital cafeteria always calls me because it must flag in their system what rooms haven't ordered anything.  I just can't bring myself to do it, just looking at the menu causes problems.  Let's stop talking about that shall we.

Thursday August 11th

MOVING DAY.  While I am at the hospital Erin, Eric, Heather, Debbie, Brad, Devin, Beth, Brian and Natalie get me all moved out of my apartment.  So grateful to them for being willing to do that.  I personally hate moving.  I have helped pack and move many others in my lifetime so I was really feeling bad that I wasn't there to do my OWN move!  They are all on TEAM AWESOME! They were able to pack it all up and get it into storage in one day.  Amazing!  Erin spent several days earlier in the week pre cleaning and getting things sorted.  I came up to the apartment to grab a few things and it was the cleanest it had been in a LOOOOONG time!  Thank you!

Friday August 12th

Chemo is done and I get to go home today.  Erin is also going home. :(  Natalie and Bryan pick me up at the hospital and and then we dropped Erin off at the Airport.  It was so much fun spending time with Erin this past week.  It is not very often I get to see her, but it is even more rare to get to spend one on one time, for as long as we did, with any of my siblings.  Good times!

During the time that I am home I go into Logan Regional for blood labs. I end up with a platelet transfusion and a blood transfusion (2 units).

Friday August 19th

Back to the HOPE LODGE!  Ken takes me to the Lodge and Debbie is going to met up with us after their family spends the day at Lagoon.  I have a Clinic appointment with Peter.  I always meet with a PA first and then they tell the Dr the low down and then the Dr comes in and just goes over everything.

So since there are a million PA's and Dr's on my medical team I am almost always seeing new people. I THOUGHT Peter was "new people".  I said, "oh...nice to meet you. I always like meeting new members of the team"!  He just looks at me like I am crazy.  He tells me we've already met.  I said, "you must be thinking of someone else, cause I've never seen you in my life".   Okay I didn't say it like that.  But I didn't recognize him and he was adamant that we had met.   I just left it with...."was I on drugs"?  Cause really I could have been on drugs.   I was having test and surgery for my port during the first round of chemo.  I'm not sure who I met.  I HAD NEVER SEEN HIM!  But whatever we will move on.  He questioned me like usual and then I met with the Dr later.  Then Ken and I went to the Lodge to get checked in.

This was a tricky check in.  I think I win a prize for having the most caregivers.  Most people are married and bring their spouse.  Or since they are from far away, whomever the bring with them stays with them.   I however, constantly come and go from the place and I am lucky to get to hang out with whomever has the time to spend with me.

They are pretty anal about knowing who is in the building at any given time so the caregivers have to sign a form.  There is only three signature lines on the form for the caregiver.  They know people will have a few during there stay. We have already started signing beyond the given lines.  They said we will just have to start a new page soon!  HA, HA!  

Ken is with me through dinner and then Debbie gets there.  We get her oriented and then Ken leaves.

I get to spend the weekend with Debbie!  YAY!!!   Once again it is rare to spend one on one time with my siblings.  It was just as rare to spend time with my Sister in Law Heather.  As adults we just don't often have the opportunity to not be surrounded by kids and a list of things to do for several days straight.  :-)

We got to do our chit chat thing, watch the olympics, and read our books.   We also watched a lot of cooking shows.  Chopped Junior....good times!  Don't forget ADULT NAPS!  The great thing about being my caregiver at the Hope Lodge is Adult Naps!  Yay!

It was sad that Debbie had to be there over the weekend.  All my labs and clinics were at 8:00 am since they are only open a few hours on the weekend.  It was sooooo early! We really needed those Adult Naps.   I ended up getting a unit of blood on Sat.  The nurse on Sunday just told me to come on Monday for the 2nd unit.  Other wise we just got to chillax and spend time together.  Good Times!

Monday August 22

Today I get me that 2nd unit of blood today.  Debbie gets me to the hospital and then needs to get home. They are celebrating Kayla's Birthday!  Ken is coming up to spend the rest of the time in the lodge with me.  So he went to get checked in while I was getting my blood and Debbie went home.

Back to Peter.  
As I am sitting in my infusion chair Tony Downstairs {because there is a Tony Upstairs to} is telling his patient that he is going upstairs to help with a Bone Marrow Biopsy.  This triggers my memory that while I was getting my BMB they were having trouble with my bones being hard to get through. So the nurse said, "go get Peter, he is downstairs".

At that point I hadn't got the feel for how things worked.  The Clinic and the 8th floor wing are congruous.  They do rounds in both areas.  Peter from downstairs is the Peter who is the PA who is insistent that we had met.   No Peter we have not.  Meeting means we have had eye contact.  I was face down on a bed being tortured.  I remember saying hi to him when he came in.  Told him thank you for coming to help torture me.  Then when he left I said,  "BYE Peter thanks for hurting me"!

I just thought it was a nurse from downstairs that I hadn't met.  I thought he was a tall blond because as soon as they said Peter I thought of Peter Conder who is tall and blond.   Peter PA is in fact shorter and brunette.

So I HAVE in fact "met" him, just not face to face.  It was face to backside in this case.  Now he thinks I'm an idiot.  "Was I on drugs?"  Why didn't he just say he was there for my Bone Marrow Biopsy!  LOL!

Monday August 13 - Tuesday August 30

We actually didn't have to stay at the lodge past Wednesday afternoon.  My levels went up so we got to go home. It is a good thing because Ken, who had a cough due to what he though was allergies, actually ended up with pneumonia!  So he was having trouble sleeping anyways.  Good time to go.

I also got to be home on the first day of school.  Aunt Natalie got Abby into school with Luke and Jacob.  Her teacher even came by to visit with her before school started.  I thought that was pretty amazing!  She was also Sydney's teacher in 4th grade.  Anywho....I missed the send off for the first day of school, but we were there after school.  Thanks Aunt Natalie for getting the back to school pictures!


Jacob and Abby  Grade 3 and 4 {No Luke because he was sick}


First Day of Fourth Grade!


Came home and found out that Luke was also sick.  He missed the first week of school.  Poor guy!  A few days later when he wasn't getting better he was seen and found to ALSO have pneumonia!  So I just spent a lot of time downstairs.  Luke was quarantined to Mom and Dad's room and Grandpa had to wear a mask until his antibiotics kicked in. Good thing I am on anti-virals and anti-bacterial meds. We have all survived.  Except Grandpa he is now in a serious insomnia phase.  Being sick has messed up his sleeping patterns.  That is no fun!

On to round 3 of Chemo!







Thursday, August 11, 2016

Bald, Beautiful and a Baptism

Thursday Aug 4th

Found out today that I get to go HOME!  Yay!  We decided to leave tomorrow morning.

My blood levels have leveled out.  My white blood cell count has gone up! Yay!  So I guess they still wait the 21 days in between Chemo treatments.  So I can go.  We talk about dates for the next round of chemo.  I will go in at 9:00am on Weds the 10th and stay through Sat morning.  Technically I should be done receiving the treatments Friday afternoon.  I then will go home to Logan and then go back to the Hope Lodge the following Wednesday the 17th.  

When we get back from the hospital Natalie and Chip Midkiff are just getting out of the car. Yay...visitors!  I serve under Natalie in the Primary Presidency.  Love her family.  Such good people! We sit and chit chat for a while and they have brought cute notes from the Primary.  The Primary kids have put their little finger prints all over a tree on a wooden sign.  So adorable!  It is great to meet with friends in the lodge.  It is a little tether to regular life.  

Friday Aug 5th

We get checked out of the Lodge and head to Rexburg.  We decided to go grab Abby so I can spend some time with her before I go back into the hospital.  We were going to meet someone half way but Garrett's baptism is tomorrow!  So we decide to stay the night in Rexburg and go to the baptism! Yay!

That night we gather for NACHOS!  It's tradition!  We love our nachos!  We decide after dinner to have a shave Amy's head party.

My hair is falling out in clumps now so it's time to go!  We had fun. My brothers, Eric and Devin, decide that we need to start with a mohawk.  We jammed out to Bad to the Bone while I got my head shaved.  LOL!  It was fun.

Link to the Party!

https://docs.google.com/presentation/d/1fnboO_6JmhqBu0q1Fouq7J-mGj9t01bhdzPOo-2TTU4/pub?start=true&loop=false&delayms=5000

It really was a fun way to do something that is a huge part of Cancer.  Hair loss!  Family makes everything better!

Saturday August 6th - Garrett's Baptism!!!


We had a great day at Garrett's Baptism.  The Stake portion was great.  I always love to see the kids as the beam coming out of the water.  I am so happy that we were able to be there to see Garrett be baptized!

After the baptism we took picture!  Of course.  It is what we do!  Then we BBQ'd yummy!  We had the opportunity to chit chat for a bit of the afternoon.  It was nice being able to see Beth's parents the Chesley's.  They were also able to be their for the baptism.  Lots of great family memories made!

After a bit we travel home and went through a very windy crazy evil storm.  It didn't last long but it was odd.  The wind was stirring up the top soil from all the farms and it looked like fire but it was just all the dirt.  Some tractors were out kicking it up as well.  That mixed with the rain and hail was just crazy!

August 7th - 9th 

Erin and I spend the next few days at my apartment figuring out what things need to go to storage and what will go to the Harper's while we stay there.  It is bitter sweet leaving that apartment.  It has been a great place to be.  I will miss my view of the valley, but it is time move on.  We have out grown it.

What a blessing that we can be with the Harper's and Steven's while I go through this period of time. Abby will have a place to settle in and live while I shuttle back and forth between SLC and Logan constantly.

I am constantly amazed by the love and support of my family.  My blood family and the family that is not blood, but born of the heart! I am so grateful for it!

Wednesday, August 3, 2016

The Doldrums

dol·drums
ˈdōldrəmz,ˈdäldrəmz/
noun
  1. a state or period of inactivity, stagnation, or depression.

    • an equatorial region of the Atlantic Ocean with calms, sudden storms, and light unpredictable winds.


Don't get me wrong I am not depressed but the inactivity and stagnation is wearing on me.

Friday July 29 - 

If you read my post on Facebook this was not a good day for me.  

Yesterday was a good 'ol Bad Day. 😥 I didn't sleep well the first night here. Not a good start to the day. I was put on the antibiotic for my deadly hangnail and it has MESSED ME UP! Apparently my immune system is so horrible at this stage that even a hangnail can be really bad.  That was a wake up call.  I have a couple of wake up calls this week. 

You know what antibiotics are good at doing to your stomach. So no sleep and miserable stomach made me weepy and a little melancholy. Missing Abby, home, work and church. You know...normal life! It's amazing what this kind of change does to you mentally. I have started to realize that when I am really tired I am a big weepy mess.  Aghhhh.  Pull yourself together.  

But don't worry it was only a bad day.  Thank goodness!  We are only at the beginning of this process and I know I will have many days like this to come.  I am writing this post several days later and I am so surprised how much inactivity is not good for me.  

Saturday July 30 - 

All is well today.  A wise man once told me, while sitting around a campfire, that it is okay to sit on the pity potty, but at some point you always have to get up and flush.  Consider yesterday flushed!

We went in for labs and everything looks great. Still no need for a transfusion. The chemo is doing its thing and my body is keeping up. 
Looking forward to a storm rolling in! Yay for rain. We are hearing Thunder!
Heather and I are now back at the Lodge putting our feet up in one of the lounges and reading. I'm letting drugs do there thing. Stitches came out on my central line. I almost past out! I am such a wimp! 
Thank you Heather Williams Cameron for fanning me and thanks nurse Tony for being awesome. 

This central line is NOT my best friend.  At the same time IT IS!  I don't have to have my veins, which can't be tapped, poked over and over for every needful thing. They just tap into the 3 ports and take and give freely.  Awesome!  However; the little bugger hurts like hell.  It has not gotten much easier to get used to as time is moving on.  The last nurse, Tony, put a different dressing on it which has made a HUGE difference!  To peel off the old dressing and then dowse my wounds in alcohol is PAINFUL!  Thus the need to pass out. He also took out the stitches, like I said, and that has helped a ton.  I am at this point thinking it was the stitches that were causing the biggest problem.  Yay for a little less discomfort on the central line!

Sunday July 31 -  Changing of the Gaurd

This morning Heather will be going home on a shuttle back to Rexburg and my sister Erin is flying in from Washington.  Heather and I have had a lot of adventures figuring out the area here in SLC.  Now we need to get to the airport.  As we are signing out of the lodge Erin calls and her flight was early.  So luckily it is only a 14 minute drive over there. 

We get her picked up and we get Erin signed in as my caregiver, tour and all.  Heather finished up some of my laundry while we were doing the orientation.  We then get Heather over to the Conference Center where the shuttle picks up.  I am sad to find out latter her trip took about 6 hours in an non air conditioned shuttle.  BOOOOOO!!!!!!

Erin and I go up to the room and guess what we do?  We are sisters....chitty chitty chit chat.  Oh yes. We just get to yak it up!  My throat gets raw we are talking so much!  The fun thing is when you are with the sisters and sisters in laws, someone can ask what you talked about for hours on end and you can't really say.  What DIDN'T we talk about! 

Monday August 1 - 

Can't believe it is August!  Today I get to meet up with a Jaye Olafson.  She is going in for her last treatment tomorrow.  Yay!  She wanted to meet with me and just talk about some of the things she has done to get through the process.  What an amazing lady.  She had brought me a beautiful flower arrangement.   We were able to talk for about 30 minutes. Her husband even came in and I got to chat with him as well.  I love amazing people who are willing to make a difference in a complete strangers life. Super awesome!

Most of the day is spent taking a nap.  Taking drugs and talking.  We even read a little.  Yay!

Tuesday August 2 - 

Back to the lab to get blood drawn.  Back to the lab to find out I am doing great and can just leave.  I love that I CAN be here at the lodge!  I JUST WANT TO GO HOME!  Especially since there isn't anything going down.  I do know I need to be close just in case, but aghhhhh!!!!!!

We did find out a key piece of information.  The nurse that was here when they admitted me was here today.  He is super helpful.  He used to work upstairs on the inpatient wing, but moved down to the clinic for a change of shift times.  The clinic is only open during the day.  So he knows both routines. 

The difference between a LAB appointment and an appointment labeled CLINIC is whether I see a Doctor.  The Doctor is only there to talk to me at the clinic appointments.  AGHHH!  The makes more sense.  Each time we've gone in for labs I've had a  list of questions and the Dr isn't there. Now we know and knowing is half the battle. - GI JOE

My stomach is still an ornery mess.  It makes me feel weak.  Why hangnail....WHY!!!!!  The hangnail looks great and I am out of the woods on it turning gangrenous and having my finger fall off.  Thank you antibiotics!  Thank you! 

My hair is starting to fall out.  As Erin and I are sitting on the couch I am running my fingers through my crazy hair and it is falling out.   Almost time to go Bald and Beautiful!! 😄