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!

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!

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!! 😄

The Hope Lodge

Wednesday July 27 -

So I got to the point where I needed to go to my apartment and grab some clothes and toiletries that I didn't have before it gets all packed up and put in storage.  I also decided to do a little laundry.  I got up the 3 flights of stairs and had to lay down for several minutes.  Aghhhh.  I did a little laundry. Took a nap.  Grabbed some clothes and shoes.  Took a nap.  Gathered toiletries. Took a nap.  Called Ken to come pick me up. Took a nap.  Love feeling tired.  It's my favorite!

The day was pretty uneventful.  Got a little more energy towards the end of the night and got packed up to go to the Hope Lodge with Heather in the morning.  Why does it feel like I am taking everything but the kitchen sink!  :-)

Thursday July 28 -

I got up and ate my breakfast and took my plethora of drugs and got going with getting ready for the day.  I actually have to get ready today.  What the heck.  I also finish up getting everything I needed.  By the time I was done my central line was on fire.  It still is a little painful and bleeding.  Ow!

I took some good stuff and laid down while I waited for Heather to pick me up.

Heather has the first round as caregiver for me at the Hope Lodge.  In my mind I like to think of them as Amysitters.  We got to SLC in good time and we were able to get checked right at the beginning of check ins.  So we were able to see our room, get food in our assigned area, and then get some lunch before heading of to the hospital.

Ladies and Gentlemen let me tell you that the Hope Lodge is the coolest place ever.  It only opened in October and before that receiving care in SLC was a huge financial strain for cancer patients living outside of the SLC Valley.  Over 800 patients have benefited from the serves since it opened.  Thousands of dollars have already been saved by the generous donations that have been given to operate this facility FREE to it's guests.  Seriously I want to cry.  It is so homey.  So nice and so much appreciated.  We just have to bring our own food and clean up after ourselves!  Wowza!

Heather and I headed to my Dr's appointment.  I get my central lines cleaned! Yay.  Get blood drawn.  Still...yay... I have a central line and there are no needles!  Then I head back to wait in a room for the PA and the Dr to visit.

I get a visit from Barb and a student from the U.  She sees how I've been doing since I left and notice my finger.  Yes I chewed on a hangnail before I left the hospital on Sunday and it is infected.  I. AM. GOING. TO. DIE. FROM. A. HANGNAIL.   Seriously though it is not good.  That is what cancer does to ya. I'm at my weakest right now and the hangnail is serious.  It is supper comical though.  So I have to go on antibiotics for my hangnail.  Bwahhhaaaa!

Doctor comes in later and brings the results from my labs and all is going well.  I am not in need of transfusions at this point.  She feels around my node sites and THEY ARE ALREADY SHRINKING!!!! YAY!  Good signs!

All is well in Amyland we just have to get this hangnail under control!   LOL!

After the appointment we get the rest of our stuff up to the room and then decide we need a few more things from the store now that we know what the facilities are like.  We take a trip to Harmon's in downtown SLC.  What an interesting adventure.  Big city life is really different!  There is no parking lot, just a parking garage.  It was not easy to find.   Now we know.  Once we were parked it was hard to know how to get to the store.  Oh...you have to take an elevator up to the grocery store.  So cool.  It was like going to Ikea up to the shopping area with a cart.  The elevators are big enough to walk in with a cart and they open from both the front and back for those coming and those going.  I am sure it really isn't all that bizarre but I thought it was an interesting big city experience.

We got back and unpacked the food and then went to orientation.  Then we ATE orientation was at 7 and it was time to eat.  We had a lovely taco salad.  Thank you Lauren for posting the cheese sauce fountain on face book.  That taco looked good and this was close enough!

Now Heather and I are chillin' in the room.  It may be time to head down for ICE CREAM!  Ice Cream makes everything better!

Blood work and a Hair Cut

Tuesday July 26 -

I went in for blood work at Logan Regional this morning.  It took just a minute.  While I was having that done Cindy got me set up with a hair appointment.  It has been really hard taking care of my hair while I have been in the hospital.  My central line makes it really hard to move my right arm up and down so it is painful to wash that side of my hair.  It is always in the way and I don't feel like doing it at all, so I usually look pretty special.
 
So off I go to salon.  I wear my mask so I get some pretty strange looks from people.  They were prepped that I was cutting it because I am having chemo and I need it shorter so I don't have to deal with long strands of hair falling off my head.  So I show the gal the picture I found on pinterest.

Does it look the same....not really but it will do!

My hair is really thick.  So things just never look the same!  I have to give it the benefit of the fact that I haven't washed and styled it myself.  But it is still something funny to look at.  I am think a flower in my hair every day will make it bearable!  LOL!  I am just going to have to say this is not my style. I will grow it back out when all is said and done.  But isn't it fun to try new hair cuts when you know you will just be bald in a few weeks!  Hallie suggested we dye it hot pink.

Blood work came back good I am still stable.  Just have to wait to go back to SLC on Thursday.  I am nursing a cold.  It started the day I went in to my oncology appointment.  We are at full force now.  What are the odds.  Is chemo kicking my butt....oh no!  Just my cold! 

A Non Drugged Version of July 22 and 23 and Discharge Day and HOME!

Apparently I already did post for these days while I was in my delirium, but I just spent time writing it.  So I will post it anyways.  Sometime it is fun to see a non drugged perspective.  I feel my posts are better when I can be witty!

Friday July 22 -

I got a visit from one of my other Dr's today.  He is a really cool guy and he explained to me the drug they would be giving today.  They did not give it to me yesterday because most people have some sort of reaction to it.  So it is given a day after the others so it can be monitored.

It is the last drug in this round of chemo.  I will first get pumped full of tylenol and benadryl to offset some of those reactions.  It can cause a rash, itching and in my case something else!

I have visitors today.  Dee McKoy, Debbie Bingham and Karen Budge from the ward come up to visit.  They have a cute bag full of goods from the experts.  Candy for keeping the nasty metal taste out of my mouth,  a cute pillow case to fit the hospital size pillow,  CHOCOLATE,  the cutest eye mask to darken the blink light filled room {fake eyelashes and all}, note books and magazines. All of this was put in such a cute bag that Karen had made.  I Heart Bags! Way to hook a girl up!  We had a good chat and then round two came.

Eric and Heather have brought Sadie and Abby to visit.  I love visitors!  They have come down for Friday and Saturday to celebrate my Birthday.  The nurse holds off the drugs until they leave so that I am not dopey while they are there.  The nursing staff has been amazing!  After a bit of chit chat and hanging out the girls get restless so they leave.  They are going to go stay at Jessica's for the night and will be back tomorrow.

It's go time.  I get the Tylenol and Benadryl in me and they let it activate. Then the drip starts off slow to allow the body to process it.  Then they will ramp it up a few times to get it going quicker.  The tech does frequent vital checks during this process.

I am doing fine with the super slow drip. So lets get the party started....they ramp it up a bit.  I get vitals taken and the tech and nurse leave and Sam say's he will be back in 15 minutes for more vitals.  The door shuts and my teeth start chattering and then my arms start seizing up.  I quickly hit the nurse aid button and tell them that I am shaking.  They come rushing back in.  The nurse says, "well your body doesn't like this stuff does it!  You poor dear let's stop the drip and stabilize you."  My entire body is spasming.  I mean just every muscle group had their own little dance going on. Dance off!  My lower jaw and teeth were going nuts.  Holy cow it hurt.  Oh it was so painful afterwards.  It felt like I just hit the gym after not being there in forever. That was the worst dance off ever!

So they re-administer the benadryl and I will only get the slow drip.  It would take well into the next morning to get that in.

Saturday July 23 -

I get all the mess in me and they take my blood to assess it.  Interestingly enough my platelet count dropped immediately.  Usually it takes a few days.  So I will need to have a blood transfusion and I will get two quarts of blood.  Kidneys are still kickin' it. So is my heart. Things are good.  My color and energy comes back after the transfusion.

I meet with Barb another Dr. on the team and she is getting me prepped for what the next 2 weeks may be like.  She and Dr G are concerned about me going to Logan because of the holiday weekend and whether or not Logan Regional will be able to handle my needs.  Later they decide that I can go home to Logan on Sunday and then get blood work at Logan Regional on Tues and any transfusions that may be needed.  Then I will be doing out patient stuff back at LDS Hospital.  I will be living at Hope Lodge which is a place for patients to stay with a caregiver while they are going through treatment.  What a God send!

Family is arriving today.  Eric, Heather, Abby and Sadie arrive with the biggest Happy 40th Birthday balloon ever and gifts!  Yay!  Happy Birthday to me!  They decorate my IV pole and hang some things here and there.  I get some Birthday buttons that the staff thought were hilarious.  My family has chipped in to fill a bag full of 40 gifts.  So much fun to open!  Also I get the best Birthday video from lots of family members wishing and singing me happy birthday!  So Awesome! Devin assures me the making of video will be released soon and will be epic as well.

Cindy, Ken, Natalie and Bryan come next. They brought me some gourmet cookies from a cute shop in SLC and some fresh clothes!  Barbara and Kristi Rands come for a visit too.  Good times to be had!  Right about the time everyone was leaving I was getting my second pint.

All the partying wiped me out, but it was so worth it!  No fun to be in the hospital during my Birthday, but everyone made it fun!

Sunday July 24 -  Discharge Day!

Barb was setting up my meds and the pharmasist came in with my meds yesterday when Natalie and Cindy were still there so they got the low down on my crazy amount of meds I need to take to deal with everything.

So I was set to get ready to go home to LOGAN today.  Like I said in another post it wasn't the best plan to send me to Logan.  But they finally figured it would be okay.  I was finally off any IV's and it was amazing finally being free of George {My name for the IV stand} I was able to shower and go to the bathroom with out his presence.  Devin and Beth are on there way to come get me and bring me to Logan.  So I have until about noon to get ready.  My favorite Nurse starts getting the last drugs in me and gets my discharge papers ready.  I also get another follow up visit from Barb to make sure I understand what is happening over the next few days.

Devin and Beth arrive and then I get discharged and then I get a shot as an outpatient.  Red tape and hoops.  Insurance won't pay for it as inpatient, but they will outpatient.  Whatev's  It's time to go home!

Devin and Beth rest a minute at the Harper's.  They will take my car up to Debbie who will be my first round of caregiver at the Hope House.  I can't be there with out some one to be my care giver.

So far so good.  I can't imaging doing this with out my host of angels.

Monday July 25 - Home for the first time.   No George.  No vitals being taken all the time.  I have kids running around and happy home noises.  Life is good.  I try to work a little and run into password issues that I will get sorted out.  I took all my drugs and lost my chance to work. I will get that going when I am in a better drug state.

Ryan Raguskus hooked me up with a co-worker that is taking her last rounds of chemo.  He gave her my number and I got to chat with her this afternoon.  She thought at the end of her ordeal that one of the best things she can do to help people out, is just be there as a person who's been through it, to vent to and ask questions.  That would be her cause.  I will meet up with her when I am at the hope lodge and meet her face to face.  Just added another member to my village. WooHoo!

I got a call for my Lab appointments and we will see how my blood counts are doing with the chemo.  May need an infusion on Weds and we will go from there!

It's my Birthday!

Saturday July 23rd

It's my birthday.  I woke up feeling kind of just off.  I find out from yet another Dr. on the team that I have a couple of things going on and that I need to get some blood transfusions.  That will help perk me back up.  My cell counts dove immediately instead of a few days later.  Thus the need for blood.
Yay for being abnormal!

But who cares it's my Birthday.  Eric and Heather bring back Abby and Sadie and they get my room including my drip lines decorated.  I get to open some presents! We have fun talking and opening presents.  They stay and chat a while and eventually It's lunch time. Heather takes the girls down to The Grove to eat lunch and Eric stays up with me.  Soon after they get back from lunch the Harpers and the Stevens show.  We all pow wow about several things. Heather was there when one of the team came into tell me about my meds that I would be taking home.

So with the Harpers and the Stevens here we have More PARTY.  At this point my nurse is starting me on a bag of blood. Natalie and Heather discuss what the Dr. said and they get it all written down. We have a fun time together.  Eric and Heather leave with the girls.

We go over some big decisions about things coming up and such.  Soon they get ready to leave and Barbara and Kristi Rands come to visit.

I loved having so many visitors on my Birthday!  I feel the love.

Once the last pint of blood gets in I am free from the IV machine.  I won't hear beeps all night! YAY!

Tomorrow I get to go home.  They finally found out that Logan Regional can handle a few days of blood work.  I am set to go to the Hope Lodge and continue my visits to the clinic here at LDS Hospital on the 28th.

Happy Birthday to me! I had a great day!

Chemo Day 2

Friday July 22 -

I got a visit from another Dr. on the team.  He is a really cool guy and he explained to me the drug they would be giving today.

It is the last drug in this round of chemo.  It has a protein compound that people can have an adverse reaction to.  So they administer it on it's own so they can monitor the reaction. I will get pumped full of tylenol and benadryl to offset some of those reactions.  But the nurse says she will do it in a bit because...

I have visitors today.  First I get a visit from Debbie {Bingham}, DeeAnn and Karen.  They are some awesome ladies in my ward that I have also played bunco with over the year.  They came bearing gifts to get me through many hospital stays.  Love IT!  As they were leaving Eric and Heather have brought Sadie and Abby to visit.  I love visitors!  We get to hang out and chill a bit before they head over to Jessica's to spend the night.  They will be back to party for my B-Day tomorrow!

After they leave they get things going.  The drip starts off slow to allow the body to process it.  Then they will ramp it up a few times to get it going quicker.  Welllll....the first time they ramp it up I go into convulsions.  My teeth start chattering and then my arms start seizing up and then my back muscle and stomach muscles don't wan to miss out and finally my thighs.  Holy cow it hurt.  I barely had time to call the nurses station to tell them I was "shaking".  They had only left moments earlier. Oh it was so painful afterwards.  It felt like every muscle in my body had been stunned with a stun gun.

Apparently I am one of the few that don't like the stuff!

So they re administered the benadryl and only did the slow drip.  It would take into the next morning to get that in.  I was hooked up to the IV drip for the rest of the day and into the next morning.

Next time they give on Chemo round 3 my body will know what it is dealing with.

I fell asleep after all the commotion.  It wiped me out!

Chemo Round One

Thursday July 21 - First found of chemo in my system - DONE!   Lookin' Hot right!!!!

Today was a pretty chill.  After the last two days of torture today was really pretty uneventful. Yay....no more poking me!

I slept REAL good last night.  One - I got phone calls from lots of loved ones that is the best! Two -  I was on drugs! Three - I was on drugs!  I will be honest I don't remember most of yesterday because of being so chill and having drugs in my system.  Didn't even recall the nurses coming in.

I got up ate, showered and went on my walks.  I get to walk a very small area of the wing.  I am the weirdo that says hi to everybody.  Ha, Ha!

I had another talk with Dr. M.  We went over any questions on the paperwork/consent form she had given me.  I pretty much told here all the medical jargon and so forth I am leaving in their capable hands.  I had questions on HOW it all plays out.

It looks like on certain rounds of the chemo I will be doing inpatient like this first round with monitoring afterwards.  I then will go to the Hope Lodge by the Cancer Society of America.  It is a free place to stay while continuing my visits daily.  On other rounds I will be outpatient with follow up visits everyday.  So I have to stay very close. This could go on for 7-8 months.  Here is to hoping that I don't get sick and add to the count!  SO NO ONE EVER VISIT ME IF YOU ARE SICK.  Just skype or facetime with me.

After I had a chat with the Dr.  I had a visitor! Yay!  Jessica {West} Raguskus heard I was here and stopped by with a Birthday gift.  It was nice seeing her.  It was a good way of going into the Chemo process.  I chatted with her for a bit and the next thing.....

Chemo.

My nurse and I watch Ghostbusters 2 as she administered the drugs.  Some of them have to be pushed in to the line over several minutes.  The others just drip in.  Lets just say Ghostbusters 2 wasn't the best.  ;-)

I have to say it was pretty anticlimactic.  Huh....so we are done.  No convulsions or sudden needs to throw up.  So I did okay.  We will see how this goes.

I did need some anti nausea pills before I could attempt to eat dinner.  I got most of dinner down. Went on my walk and I spent the rest of the night watching TV.

Torture Day 2

Wednesday July 20 -

So all the test they didn't do yesterday are being done today.  First I get the EKG.  Then about an hour latter I have the Echo Cardiogram done.  That was cool because I got to hear and see my own heart beat.  It works!

I chill for a bit.  I would eat breakfast but I don't get to.  I am fasting again.  However now I get to take drugs for things.  I take more drugs for the headache and a bunch of cancer drugs that help keep things good while I have chemo.

I get to chill again and then it is time for the bone marrow biopsy.  The lady that came to do that is a spit fire. She is super awesome.  She asks if two student nurse can watch.  "of course!"

So I have to lay flat on the bed.  They pick a site that they think will have good landmarks.  There are a couple of samples that are needed.  Two that I picked up on are the marrow itself and then a bone chip.

She gives me a local which pinches and then burns. Not nice!  Now I can just feel all the pushing around digging.  Well after several minutes there is not success.  "Amy your bones are really tough"! I told them I am Super Girl!  She ends up sending in for a male nurse Peter. I told her it's the pickle jar effect. She gets things loosened up and he will plow right through it.  Well they are still both struggling to get a chip or the marrow.   Thank goodness for DRUUUUUUGS!  That's going to leave a mark!

That happened right in my room.  While we were waiting for the team to have an opening for my Tri-line catheter thingy my Oncologist came in.  She explained in greater detail what would be happening and why they would be doing it that way.

Essentially I am doing what is called Nordic Chemotherapy.  I will have 6 treatments that take about 3 weeks to process.  Every other treatment is a different "recipe" of chemo.  So 1,3,5 will be the same and 2,4,6 will be the same.  When that is all done and IF there is remission I will do a stem cell transplant.  It is my own stem cells that will be harvest and frozen over at the Red Cross.  That is the short versions but the jist of it.   This whole process could take up to 8 months!

Oh Boy.

They finally come grab me for getting in the Tri-Line thingy.  The tecs in this department are hilarious.  I get some good drugs and the line goes in and then tunnel up over my collar bone. So I can take out my IV's!!!! That makes me soooo happy!   I will have everything done through those ports.

I get back to my room and I am able to talk with quite a few people.  I basically get the rest of the day off!  No more torture!

Torture Day 1

Tuesday July 19 -

Natalie and Cindy took me down to SLC this morning for my testing and to get admitted to the hospital.  We went down just knowing the tests they were going to do, but the rest was completely unknown.

We got to Intermountain Regional Hospital in SLC and it is HUGE!!!!  We got to where we needed to go, got registered and then started my torture session.   I was in for a PET scan, and several CT scans with contrasts.  Time to find out were all these buggers are.  This is how they stage the cancer by telling where it is at.  Later the Dr. will tell us they need all these scans so that as we are going through the remission process they can see if "things" have gone away.  These scans will be their baseline.

I had to go in fasting again.  What happens when I fast!?  Migraine!  So here we are again.  I am getting the headache that comes before the storm.  The technician takes me back and he needs to get and IV going.  Where is my beloved Captain IV!?  This guy can't find anything so he goes for the vein on my wrist just below my thumb.  He says it better to go for a sure thing than miss.

I have to drink the drink that cancer loves.  All the cancer cells gravitate to it and that is what helps the scan see what it needs to see.  It almost tastes like fruit punch.  BUT NOT.  It is not yucky and not yummy at the same time.  I then get to rest for about 45 minutes as the liquid circulates through my system.

Into the scan room.  This scan takes 20 minutes to do.  "Don't move."  Okay.  THAT is the worst part of the scans.  Claustrophobia has nothing on having to sit still for that long.  I had to have my hands about my head.  My fingers started to go numb.  Thank goodness they started the classical music.  I know the approximate run time on most classical pieces and new I had to get through about 4 or 5 songs before it was over.

After that scan.  They went and got Cindy and Natalie.  They went and got lunch while I was doing this first part.  I now had to drink more cancer juice.  This is now disguised as lemonade.   It isn 't fooling anyone.  We wait about 20 minutes.  I had to force myself to drink half of one of those bottles.  YUCK!

Time for the CT.  I have to get another IV put in.  I miss my Captain IV.  This tech needs a bigger needle for the contrast material.  So we need another IV.  He finds a vein in my right arm.  I am becoming very holy.  These scans are shorter.  In and out I go.  All done.

At this point I am HANGRY and the migraine is ON!  I call "the Coordinator" and ask if I can eat. She says yes.  BUT I am ready to puke so eating isn't really a very good option.  We head over to LDS Hospital which is right over by temple square.  I didn't know that existed.  We get to the hospital and Cindy tries to find me something to nibble on for me.  While Natalie is parking the car and Cindy is finding food the technician calls from the other hospital and he didn't do one of the scans.  NOOOOO!  He is going to call LDS hospital to see if I can do that scan there.

Yes they can.  So we make our way up to the 7th flood were we will meet with the Dr's.  We are only in the exam room for about 5 minutes and they say to go back down to the first floor and they will do the CT scan.  The gall at the reception table up on the 7th floor gave me crackers and some ginger ale so I am monchin' on crackers everywhere I go with my ginger ale can in my hand.

I have to fill out MORE paper work!  Central Databases people!?  Holy cow!  I now have to take the contrast material twice in one day.  They were taking some time to make sure that was alright.  It was...she would just have to flush me with some fluids to help my poor kidneys out.

That takes a bit of time to do the flush.  Nathalie and Cindy are found and they sit and wait while that goes in.  Still a huge migraine.

Okay IV done.  Head back upstairs to the 7th floor to meet with the Dr.  It is late now and no one is there.  Cindy and Natalie find the nurse that was helping us before and he shows us back.  Finally meet with the Oncologist and the physicians assistant.

They tag team and tell us all about what's going on.  Some of it I remember some of it i don't because of the migraine.  I will get more info from the Dr. the next day so I will save it for tomorrows entry.
They went through my medical history and through my family history.  Then did an exam.

The scans they did show that I have nodes that are enlarged in my armpits, abdomen and upper thigh area.  Also my spleen is enlarged.   The bone marrow is bright in the scans as well so thus the bone marrow biopsy.

All is treatable with the plan they have in place.  Which is what everyone wants to know.  It is complex and hard to explain.  It is going to be hard to plan anything for the then next 7-8 months. Yes that is how long the treatment will take.   The ability to get it into remission depends on my health {which they say is really good} and the risk of getting sick from outside sources.  The treatment plan is aggressive yet it has the higher success rate of having patients in remissions for longer periods of time.   Doctor can see my eyes are crossing.  There are things she'd like to go over with the board tomorrow.  All the cancer patients have a team of Doctors that join there brains to come up with the best treatment options.  I feel confident they know what they are doing.  She sends us off to get settle and admitted up on the 8th floor.

By that time I was able to order food!  Food glorious food! I couldn't really eat it I was soooooo nauseated! I ate as much as I could though.  I met my night nurse and PCA and fell asleep.  Can you fall asleep in the hospital?  The first thing that woke me up was someone dragging furniture on the floor somewhere.  It was so loud!   Just start to fall asleep and nurse comes into give me drugs.  He wants to make sure that we get it under control.  I also have drugs pertaining to the chemo that they need to get into my system.  Just fall asleep and the PCA comes in to get my vitals.  Just fall asleep and they come and draw blood.  Just fall asleep and they need to get a drip in. Just fall asleep and It is time for drugs again. Just fall asleep and vitals.

Oh it's morning.  I might as well stay up.

A big blessing and off we go!

So I failed to mention something pretty awesome.  I got so excited about a diagnosis that I failed to mention something I was leading up to.

I had mentioned that the doctor said it was not likely that I would recover from the cranial nerve palsy.  The damage that is done is usually permanent.  After I got the stitches removed at my last appointment Dr. asked me to stick out my tongue and wiggle it.  I wiggled it all over the place. To the left... to the right. Up down and all around!  I have full function of my tongue again!!! No more Sid the Sloth!  No more almost drooling!

We talked a little more about other things and he asks me to stick out my tongue and wiggle it again. He was so excited.  "Man I wouldn't have given you even a 10% chance of that happening.  What a blessing!"  I am pretty excited too and very grateful!  Small miracles...a big blessing!

Monday July 18th - Meeting the oncologist day.

So Cindy and I get dropped off at the Huntsman center.  The doors aren't open.  They asked me to be there early and my appointment was at 8:00.  So why aren't they open?  Uh...are we at the wrong place? A gal showing up for work walks up to us and determines we are at the wrong place.  We needed to be on the 3rd floor of the Budge clinic.  There is an oncology department over there? Huh...now we know.  So we booked it over to the budge clinic on foot.  Not too bad.  I just hate being late for appointments.

We get in there and get asked a lot of the same questions that I got asked at my other first appointments.  The Dr. gets in and he is a really cool guy, with a really cool accent. :-)

So it looks like my cells are dividing slowly.  He said that is good and bad.  I didn't get to ask why. That goes on my questions to ask the Dr. list.

I will have to go to SLC to receive the chemo used to treat what I have.  It takes the big nasty chemo and the right team of nurses and doctors to monitor that treatment.  Okay.

The Dr. tells me the scans and procedures that he needs before we get started.  The one that he wanted to do right then was the bone marrow biopsy.  Okay

The nurse that is taking care of that treatment gets us into another room a bit later and gets me prepped for that biopsy.  I am lying on my stomach with my hips exposed.  The Dr comes in and says, "change of plans".  LDS hospital wants to admit me and get all the scans and tests done there. They will have the results super quick if it's done that way.  Okay

I get put back together and they tell me to wait for a phone call from LDS hospital.  Off we go.

I go to work.  My Clinical Coordinator with the Intermountain Acute Leukemia and Blood & Marrow Trasnplant Program calls and tells me what they want to do tomorrow.  Her title alone freaks me out. WHO ARE YOU and WHAT ARE YOU GOING TO DO TO ME!  {LOL...It will be okay} I will do the PET scan at the Intermountain Regional Center in SLC and then when that is done I will travel over to LDS hospital where they will admit me and do all the tests.  They will also do the first round of chemo. {Come again...wasn't expecting that so soon} She says to plan on being there......a week. WHAT!?

She needs to talk with some of the specialist and she will call or email me with more info later.

I call Debbie at this point!  "Debbie I know you just dropped Abby off on Saturday, but she needs to come back up again...It's go time".  Of course they are ready and willing.  Bless them.  Once again I can't do any of this with out my people.

I get the email from my coordinator and it says to plan on staying SEVERAL weeks.  aghhhhh....am I packing for vacation at the most expensive hotel on the planet? Yes....yes I am.  Something tells me this won't be any sort of vacation. Still don't know what exactly is happening.  We will find out tomorrow. I will meet with "the team" down there and go over all the details of the treatment plan.  It is all happening so quickly.  I am hoping this also means I will get to the other side of this quickly as
well.

I get to go in fasting {boo} but I get to drink {Yay!}

Oh Boy!  Off we go!

Part 2   Surgery and a Diagnosis 
{Part 1 is further down if you haven't read that yet}

Tuesday July 5th -  Abby has been picked up by Heather to head up to the "Idaho contingent". {Phrase coined by my Dad - Bruce Cameron} She will be staying with Debbie, Brad and Family and  with Eric, Heather and Family.  Thank you!  I worry most about Abby and how to deal with her and her needs and being crazy sick.  I am blessed with great family and a strong village.  It is the only way this will go well!

Wednesday July 6th - I go to work and plow through my work load knowing I won't be there for several days.  I end up not eating lunch.  I tell myself I am just practicing for the fast that needs to start at 12 midnight.  I of course start to get a headache. Oh no!

I get home and eat dinner and then get a text from Natalie. How are you doing? Don't forget to pack a back to stay with us tomorrow.  Do you want a blessing tonight or in the morning?

I am of course worried about being scared and hungry the next day.  After that comes the call. Get your butt over here. {Not quite those exact words} We will keep your mind off of tomorrow, give you a blessing and make sure you are not alone.

THAT is the stuff that gets you through things!  I am learning to accept help.  Not exactly my strong suit.  I will get plenty of  practice in the days to come.  Of that I am sure!

Thursday July 7th - The BIG DAY!  I wake up with a MIGRAINE!!!!!  This is okay actually.  Who has time to be scared when you have a migraine?  I mean you can't think let alone be nervous!  That is my Pollyanna moment.

I called the day before and my surgery is scheduled for 1pm.  Be there at 11:45am.

At about 9am they call me and tell me that things are postponing and not to get there until 12:45pm. Dang it! I'm hangry and I have a migraine!

We finally go.  Cindy Mama is taking me. We get checked in, get into the waiting room, get gowned up and get asked a million questions.  They IV nurse comes in and tells me I'm not "generous".  Ya... she's the one!  I end up with an IV in my wrist!  Maybe that's normal.... but...Ouch!  So they turn the lights out and hooked me up with better ice packs.  I will just chill with an ice pack on my face and neck until it is finally time to roll.

They ask Cindy if she'd like a drink.  She says yes and they bring her a Diet Coke and a cup of ice.  We'll she ends up spilling the ice and making a huge icy mess all of the floor! Ha! I think it's hilarious.  She doesn't.  Ha Ha!  No she does too.  Talk about an ice breaker to relieve some stress!  {I'm here all night} She gets things cleaned up and gets settled in.  We are going to be here a while.

Another doctor has a patient that is taking WAY longer than scheduled and my time keeps getting bumped.  Once again, thank you for the migraine, I could care less what time it is or what's going on. I am in pain!

While we are waiting the ice pack on my face has done a thorough job of pretty much freezing my forehead solid. I flip it up on top of my head AND all the ice and melted water dumps down my head and down my back, completely soaking my pillow and the blanket I was using.  OOPSIE!!!!  They are going to ban us from having any ice in this hospital!  Cindy gets a new pillow and blanket and we get settled again.  Aren't we quite the pair.  :-)

The Doctor comes in and draws the line on my neck where he will be making the incision and tells me he is ALMOST ready to go in with the patient that was scheduled before me.  We still need to wait.

Next thing I know the anesthesiologist is coming to take me back.  As he wheels me back he is asking about my migraine.  He asks what sets them off and what I do to relieve them.  I tell him: stress, lack of sleep and hunger, to the first question.  Sleep, food, drugs and caffeine for the second.  He tells me that maybe he can get some caffeine in my drip so the migraine is gone when I come out of surgery.

In I go to surgery.  One minute I am getting on the table and we are laughing at joke* the Doctor made and the next minute the nurse is saying, "there you are", as I am coming out of anesthesia.

*The joke:  Dr comes in out of the hallway through the flappy doors. He is laughing at something someone said in the hall.  "Oh....I am just a little disoriented! Chuckle Chuckle".  I laugh, cause I know how funny my doctor is.  The anesthesiologist pipes in, "Oh...he isn't really disoriented"!   Ha Ha I wasn't worried!  No one like a disoriented surgeon! 

She gives me ice and I am having to tell myself to swallow.  My brain doesn't want to.  It hurts!  I can feel where the incision was.  The nurse asks if I am in pain and she ups the meds and gives me more ice.  Doctor comes over and see's how I am doing.  I smile.  I cry a little.  He tells me it's definitely lymphoma.  I cry a little more.  I hurt.  He asks if it's because of the diagnosis or because of the pain. *** It's the pain!  She gives me more drugs.

Next thing I know I am being wheeled to recovery.

***Before I get to recovery the Doctor asks Cindy if I understood what the possibility was that it was lymphoma.  She said yes.  Not until she heard my end of the story did she understand what had happened.  He was concerned that the tears were because of the diagnosis.  He was happy that I woke up with a smile.  It was a risk taking the nodes on the nerves.  It could have caused paralysis.  Yay for waking up with a smile! 

Another nurse comes in and tells me we can finally get something to drink.  Let's get rid of the migraine.  She asks what I'd like to drink.  I tell her I better have water because the anesthesiologist put some caffeine in my drip.  She looks at Cindy and gives her a "what the heck" look and they start laughing.  "JUST BRING ME A DR. PEPPER!"  Apparently there is not a caffeine drip!  All these doctors are clowns!

We take a bit coming out of recovery and it's time to go home.  The nurse is awesome and sends me home with two cups of warm chicken noodle soup.  How stinkin' awesome is that!?

The Doctor was hoping for an immediate understanding of what I had.  The pathologist said I have "old man" cancer.  Then he looked at my charts.  Well that doesn't work.  SO off to SLC with the nodes and they will see what they can determine.

Home and DRUGS!!!!

I know we got home and I parked it in the living room recliner at the Harpers and that is were I stayed for a bit.  The rest is foggy.

I remember getting up to go to the bathroom. YAY!  Cause it took a lot of effort.

and....that's it!  DRUUUUUGS!!!!!!


Friday July 8th -  I have to get up to go get the drain taken out.  I wear my pajamas cause I really don't care.  Luckily I got lots of compliments on my sweet pants at the hospital the day before so I know they don't look too bad.  {False Security}

Cindy and Ken take me in.  Ken waits in the waiting area.  We get to the room and Doc comes and says, "Amy...you are a bit of an anomaly".  I am thinking..why! ...is my heart on the wrong side of my body!  Am I a medical freak!?   He just tells me that it's rare to have patients deal with the information I have been given and be so good about it.  I've always been so positive when I see him.  I just told him that's the way it's got to be.  We can write a whole 'nother post on that later.

Doctor starts taking out the tube.

Let me tell you something about myself.  I can NOT give blood.  I faint.  It's not the needles it's the feeling of things exiting my body that weirds me out.  I can't control it.

The feeling of the tube coming out is ten times worse.  I grab his hands with my eyes open wide and I start to loose it.  He says it's pretty long and to hold on he almost has it out.  He gets it out and I'm going south.

Cindy is calling my name and I tell her I am trying to breath through it.  The Doctor and Nurse get me over to the chair with arms and out I go.

Then I come back... "oh...that's better I see the color coming back".

Good grief!

I go back to the recliner at the Harper's and reside there for the next few days.  We all watch "ALONE" on tv that evening and get hooked.

Saturday July 9 -  I remember Natalie making sugar cookies, because it's National Sugar Cookie Day!

I remember Cousin Owen coming to bring me flowers and meeting his awesome sweetheart.

I remember watching Parks and Rec with Hallie and laughing really hard even though it hurt to laugh.  I remember zoning out because of the drugs, but still laughing when everyone else laughed.  It was involuntary and super hilarious in my mind.  I am laughing just as an auto response to other people laughing and I giggle to myself.  It was loud enough that I don't think anyone noticed I was doing it.  DRUGS!!!!

It's funny as I am writing this a couple of days later.  I can't remember what I don't remember.  I am sure something will trigger a memory but right now...Drugs.

I slept A LOT.

Ended the night with another few episodes of "Alone" it's sooooo gooood!

Sunday July 10 - I am now sick of being on drugs.  It is making me feel crazy and I can't stand how much I am falling asleep.  I want to read my book and my eyes keep crossing and then I fall asleep.  Priorities!  Sleep all day after surgery and get the rest I need OR read my book. Come on!

I try taking just ibuprofen on my next round mid morning.  As Natalie is leaving for church at 1pm she asks if I need anything and I couldn't respond.  As I start to talk I can't form the words and my jaw starts quivering.  It is NOT time for lighter drugs.  Back on the heavy stuff.  That was weird and scary.  Another day of sleeping for me.

We have just a nice evening of reading books {trying on my part} taking naps {had by all} and just relaxing.  A nice storm came through on Sunday and cooled things off quite nicely.

Monday July 11 -  Still feeling like crap.  Today I make a concerted effort to bounce between Tylenol and Ibuprofen today.  I also decide to head home.  I am more alert today so I though I should get home and see what that does.   The Stevens and the Harper kids drove me home.  We stopped by Sam's on the way home and it got me moving.

I did pretty good.  I tried sleeping in my bed.  It did not go well.  I am going to have to sleep on the couch.

Tuesday July 12 -  I went back to work.  Not too bad.  I got a few hours in and came home at 2.  Went home and slept the rest of the night.

Wednesday July 13 - Wake up and need to get in early for a meeting.  I now know how people feel that can't wake up in the morning.  I have the opposite problem.  Can't stay asleep past 5 am.  NOT anymore! It is hard coming out of a drug induced sleep.  I am super nauseated today.  I only last 'til 1pm.  I can't get rid of the nausea.  The migraine comes back like it usually does when I get them.  Super rough night.

Thursday July 14 -  Didn't sleep well at all!!!!!  I've fallen off the med cycle and I've had a hard time keeping track.  I let the pain get out of control.  I wake up just sick!  The migraine is one of those "after migraines" the ghosties that come back.  They aren't as bad.  I think I will be okay.  Still can't get the nausea to go away.  I take my Zophran and it helps a bit.

Off to the doctors to get my stitches out.  Again Ken and Cindy take me over.  Ken waits in the car this time.  He is getting smart.  We get in and he takes out the stitches.  No fainting spells this time!  YAY.  One yank and it was all out! Phew!

The results are back.  I thought I would have to wait until I meet with the oncologist on Monday.

I have MANTLE CELL LYMPHOMA  I do have old man cancer!  I feel entitled to buy my own recliner now!

The nodes were HUGE.  6 CM on one of them.  Holy Gravy!  There are 11 nodes with this happening to them.  The other term they used was Low-Grade lymphoproliferative disorder.  Someone can google that.  I am abstaining from google searches.  I will keep with the information I am told by the Doctors.  I have chosen not to worry about things that come from over exploring the topic.  This is just my way of staying blissfully ignorant!

I see the Oncologist on Monday the 18th.

That concludes getting everything up to date.  I will try and post regularly to keep everyone informed. I don't really want to use Facebook as the medium for communication.  I know group texts are awful and I will gravitate away from doing that now that this is available. 

Please ask questions.  I will get them answered.  For everything one thing that I have written I am sure I have left out about 10 more items of information! 

Love you all!  I feel your prayers, good thoughts and happy juju!  

We can do this!

Welcome Back!!!

Welcome back to the blog!

It's been SIX years since I last used this!  Holy Cow!  It still exists so I am going to use it!

Well I've told several people that I just need to start a blog so that everyone can keep up with the juicy details of the latest and greatest drama of 2016.  Drum roll please.......CANCER!

So let's start from the beginning.  This is going to be long so get comfy.  No...I don't do short versions of stories.

October 2015 - I start getting ill.  First cold/sinus juju of the fall/winter season sets in.  It's a doozie and kind of opens the Gateway to Hell.

Just as I am finally starting to feel good again...

November/December 2015 - SHINGLES  I. Have. Shingles. They hurt like hell! Imagine sharp needles in your skin and they are electrified.  This on top of painful blisters. That was some serious sadness.  My lymph nodes are swollen.  I don't worry about it.  I'm just really sick.

December/January 2016 - By the time I go to the Doctor in January she thinks I've had MONO through New Years.  What were the symptoms?  I can't move a muscle.  NO ENERGY! My everything hurts.   I get blood work done and what does it say?  I have a high white blood cell count. Don't worry...my body is fighting a nasty infection! My lymph nodes are swollen. I don't worry about it.  I'm just really sick.

That's puzzling.  I feel sick, but with no direct symptoms of any illness in particular.

Soooo.  My wisdom teeth had been bothering me and I had the sudden thought to go to the Dentist.  I get seen by him right away and sure enough the X-rays show I have a jaw infection!  Phew... that would be a good reason to have a high white blood cell count! Right!?  My lymph nodes are swollen. I don't worry about it.  I'm just really sick.

January 2016 - I take a course of antibiotics.  The wisdom teeth come out.  All is well.  They came out well. No real drama there.

February 2016 - We head to Grandpa's funeral.  When we get back it isn't even a solid week and I get a sore throat from Hell.  Remember the Gates of Hell have been unleashed on me at this point!  I go BACK to my Doctor. She says I don't have strep, but a really bad evil sore throat upper respiratory bad juju thing going on.  "Take this....with that....if this isn't gone by Friday go to the emergency room you will have pneumonia if it hasn't gotten better"  My lymph nodes are still swollen. I don't worry about it. I'm just really sick.

So a few months go by.  I didn't have to go to the emergency room with pneumonia.  No colds or nasties going on.  Life is good. Until...."man my lymph nodes are still swollen"! They hurt! WHY!!!!!  Now I am worried!

Thursday June 16 - I am starting to feel crappy again like I did when the whole jaw infection thing was going on.  My jaw and ear are starting to hurt and I don't know why.  I schedule an appointment with the Dentist to see what's up.  Maybe the jaw infection is back?  I don't know.  He takes X-rays and tells me nothing is indicating that there is anything wrong.  There is a slight swelling along the gums on the right side, but I may have bit down wrong on something and irritated it.  I am still healing.  Don't worry about it.

Sunday June 19 -  I start to get "sick" again!  This time I have shooting pains behind my right ear. Do I have an ear infection?  The pain starts at the base of my skull and shoots up to the middle.  It feels like a migraine, but it's in the wrong place, and it's not a "head ache".  It is stabbing pain.   I take some medicine to bring down the pain.  Am I a hypochondriac?

Wednesday June 23 - I went to bed with a tingly numb tongue.  Didn't think much of it until I woke up, brushed my teeth, and I couldn't spit out my toothpaste.  It just went everywhere.  I open my mouth and look in the mirror and my tongue is swollen! It is swollen right down the middle on the right side. I can't move my tongue to touch where my wisdom teeth used to be.  This had become a habit since they were removed.  I can not physically move my tongue to the right.  My speech is slurred!  CRAP! I mumble a call into the doctor to make an appointment TODAY!!!!

They get me in and it is busy!  I have been blessed this entire experience for being seen, same day, no matter what the wait time.  It takes a while, but I final get in with the Doctor.   She asks me what's going on and she takes a look at my tongue.  Her eyes got really big and she says, "I need to step out and contact another doctor."  She leaves.  I crap my pants.  I sit there for about 15 minutes and she comes back in.  "I've made you an appointment with a specialist.  He will see you TODAY at 3:30 don't miss that appointment!"

I text my Cindy Mama and she gets my Ken Dad to come over and give me a blessing.  It was a great blessing that will set the tone for how I handle what is to come.   He takes Abby with him back to the house so I can sleep until the next doctors appointment.

I get to the ENT's office and again, I need to wait, but I am being seen same day!  Super grateful!

He looks at my tongue, has me stick it straight out and then move it side to side.  "Wait... do that again"!   My tongue won't move to the right.  He feels my swollen lymph nodes, but with the hands of a specialty doctor, he feels what the others didn't.  A mass.  There is something on my 12th cranial nerve.  It's pretty much making it so the signals don't get to my tongue.  I sound like Sid the Sloth at this point.

He orders CT scans of my brain and deep tissue scans of my neck.  As the front desk is making the appointment with the labs at the hospital the nurse comes out and says, "he wants them done today...tomorrow at the latest!"  Ughhh....now I'm getting nervous!

Thursday June 23rd -  Off I go to radiology.  I have only been in the hospital to give birth to Abby. That's it.  I have had no major medical anything in my life.  So I go to the appointment and they hand me the consent form.  They should have a consent form FOR the consent form.

This consent form releases us from any mental or physical damage that may occur from reading the next consent form.  Secondary consent form may cause major stress, diarrhea and the inability to control it.  Known side are and not limited to:  heart palpitations, nausea, high blood pressure and in severe cases....fainting.  Please sign before reading the next consent form.  

I get tagged and signed in and then taken back by the guy I now call "Captain IV".   I go into the CT room and it is just me, "Captain IV" and the big scary scanner!  The equipment is so big and powerful it is shaking the room.  The humming it makes is really loud!  I get to sit in a really fancy chair while I wait though.  That is cool.  I feel like a princess!

He gets everything he needs going and gets me on the scanny moving table thingy.  He then has to get the IV in.  NOBODY gets an IV in on this chick.  I am not a very "generous" individual as another nurse put it.   I tell him this while he is rolling veins.  "Nobody can ever find them, they always end up in my hand".  He tells me to just keep pumping my fist.  I tell him it sucks because it hurts in my hand.  He tells me he is already done.  I tell him he is my hero and I am going to call him "Captain IV".  He smiles.

In and out I go.  Luckily it is not what I thought.  Only my head goes in the tunnel of claustrophobia. I am able to handle it.  He warns me that he has to do the next scan which is the contrast that needs the iodine.  He tells me it's gonna feel warm going in and possible taste funny.  It's definitely going to make me feel like I pee'd my pants.  I am very glad he warned me!

All done.  He says he needs to take out the IV and I start to whine about how that hurts and he says he is already done.  I tell "Captain IV" that he gets 5 gold stickers today.  I need him to come to every appointment where they have to give me an IV or take blood.  He smiles.

Tuesday June 28 - Results time.  Now Cindy Mama has banned me from going to appointments on my own.  I don't ask enough questions.  It's true. Plus you just need another set of ears.  Did I hear that right?

He starts reading the radiologists written results.  He is reading then thinking, reading out loud, processing..."huh that's weird.  They didn't find anything".  "Oh...wait that's your brain scan.  Nothings wrong with your brain"!  YAY!!!  So onto the neck results.  Yep you have the likely hood of lymphoma.  The lymph nodes are huge, round and dense.  Not just angry.  If they were they would have clear fluid in the middle.  Mine did not.  We will have to biopsy and see what we are dealing with.

Well....

We went to look at the scans and the lab sent them wrong or they wouldn't pull up.  So I got some really sweet hand drawn pictures from the doctor.  I joke that I pay LOTS of money for scans and then get crude drawings for the results.  Gotta love modern technology.  It's only a modern marvel when it works! Still I got some pretty sweet drawings!

I asked if the surgery would bring any of the feeling back to my tongue or was it permanent?  "It's usually pretty permanent".  Once nerve damage occurs there isn't much hope for fixing that.  Yet he was going to try.  I am good with trying.

I get set up with a surgery date. He is going to do a node dissection.  I was asked when the last time I took Ibuprofen was and of course it was that morning.  The surgery can't happen until at least 10 after that.   I get set up for Monday the 11th. Until later that day I get a call. The Doctor said no and moved it up to Thursday the 7th.  Let's move this along.


End of Part I