Treatment 3 and Memorial Day Weekend

Written May 28, 2018 Memorial Day

Still catching up!

Thursday May 24, 2018

On to infusion number 3.  I got a private room!  YAY!  I can pass out in privacy and people can come and go and I'll be none the wiser.  I asked Mitzi straight up if the infusion was going to be 3 hours.  She said yes.  When she went back to her desk and came back she said the infusion should not have taken 7 hours last week.  It was just a newer nurse to infusion being cautious.  So today we are going to dump and run.  I told her all about my creepy sleeping incidents last time and she was dying.  It was really funny.  

Ben came for his visit to knock me out.  They give premeds first so by the time Jen came to be the second signer on my chemo I was wasted!  They always ask for your name and date of birth so I said it but I did it really choppy.  I told them, "I. have. to. e.nun.ci.ate. my. words"  They both started laughing.  I always sound like a drunk when they come ask me questions.  Why is the Benadryl being such a beast!  I didn't have these problems before! 

It was magical.  I feel asleep and them woke up and it was done.  That was super fast!  Woohoo!  I had to go home and sleep for another 4 hours to get the Benadryl out of my system.  The worst part about chemo day is the Benadryl.  I can't complain.  

This is how it usually goes.  

Thursday Day 1:   Infusion - Benadryl Sucks!

Friday Day 2:        I feel like puking.  I am usually good if I stay medicated. 

Saturday Day 3:    I am tired as all get out, but I can usually push through it.

Sunday Day 4:      I am usually on the mends.  Just weak.  

I am finding out how stress plays out in all this.  Remember one of the initial questions being, "what is my stress level"...  Six?

Well on Tuesday I had a really stressful moment at work.  I have the ability to remain calm under pressure but sometimes all the planets align and I snap.  I have felt my blood pressure rise before and have always wondered what it would be if I was took take it during those moments.  Well I happened to have a follow up appointment right when this incident happened.  So I drove to my appointment seeing red and trying to calm down.  The nurse took my blood pressure and her eyes popped a little.  145 over 75.  She asked if that was normal.  I assured her that it was not.  I just left a stressful situation at work. That number was after 20 minutes of me deep breathing.  I can't imaging how much higher it had been moments before.  

That night I was wiped out and my body ached.  This medication does not like me being stressed out.  It is not friendly!  No more stress for me!  

Saturday May 26 and 27, 2018

Nathan was in the SLC area visiting his brother.  Abby was going to drive back with him to Washington.  That worked out perfectly!  We met him for breakfast at IHOP.  We had a good time at breakfast catching up.  

After breakfast Abby and Nathan headed north and then I headed south to go visit Devin and Beth at there new house in Orem.  

I should have know that they would have no more need of assistance unpacking.  They had it all done.  They are so speedy.  When I got there we headed out to Costco to do the weekend shopping and then Devin and I went to Sam's Club to go get a trampoline.  I bought the stuff I wanted from Costco since I don't have a Costco nor a membership.  I have a Sam's Club card and they had trampolines so yay for swapping membership services this weekend!  LOL!

Beth and I put the trampoline together while Devin busted out a new kitchen island.  

Almost done.  Not! I wish!

We had to pull Devin away
from Island Duty for this part.

All Done!

Success!!!

We had dinner and then played games that night.  Sunday we went to church and then came home and played Settlers of Catan.  Good times!  We had a yummy rosemary ranch chicken for dinner and a strawberry pound cake with strawberries, vanilla pudding and whipped cream.  It was divine!  I always love visiting family!

I made it home on Sunday evening without falling asleep at the wheel.  That's always nice.  

Debbie was passing through on their way south to visit family on Monday.  The plan was to help me take more stuff to DI and to the garbage.  I am still trying to get the corner of requirements which used to be the room of requirements, down to a tote of requirements.  I was too tired.  I played too hard last week and over the weekend.  I regret nothing!   So they stayed for a bit and chatted and at least took down my garbage.  Plus they were returning my laptop.  Awesome Brad got it working for me again.  He's the best!

I am sad that I didn't get to go to the cemetery this year.  I was just to weak.  

Gone Fishin' and Rituxen Treatment 3

Written May 28, 2018 Memorial Day

This past week was the last week of school for Abby.  YAY!   On Saturday Erin invited Abby to come up to Washington for the summer.  I am so grateful for that.   It gives Abby a place to be for the summer instead of home all alone while I work and be sick.  Plus kids don't quite understand what it means when you tell them you are sick and you can't move.  "MOM....I'm hungry what's for dinner!?"  Uh...I can't move.  So that will be one less thing to worry about for me.  It will be super fun for her.  I am actually quite jealous.

I spent the weekend thinking through what I would need to pack for Abby.  Also did the normal weekend stuff.  Laundry, cleaning the kitchen etc. I did as much as I could.  I am having to spread more out in the evenings during the week instead of saving it all for the weekend.   I love that my sickest days are on the weekend so it doesn't interfere with work too much.  I also HATE that my sickest day are on the weekend because I just can't accomplish what I need to get done!  So aggravating!

When I got to work on Monday and told Ashton that Abby was heading to Washington for the summer he said we needed to come fishing before she leaves.  He had invited us to come down to the family "pond" and fish and ride the Razor this summer.  We needed to do it this week before she leaves.  So we picked Wednesday night go fishing.

Wednesday May 23, 2018

After work Abby and I headed out to Wellsville to go fishing. We met at his house and then head over to the pond.  Ashton picked up his nephew and we headed out.  Ab and I drove over in the Razor.  I thought it would be a little drive from his house down a dirt access road or something but it was a little ways away.  It was over the river and through the woods so to speak.  So we really got to drive the Razor!  It was so much fun.  Nothing like the wind wiping through your hair!  Abby loved it!

We got to the pond and explored.  This is not small "pond" like I had imagined.  It is quite the body of water.  Ashton had picked up a pizza for dinner and I brought stuff for some s'mores later. So we were all just going to chill and fish.   He had gone down to the pump to clear it of moss with his nephew and Abby and I walked around.  They found a turtle!  It didn't like me much.  Everyone touched it's shell just fine and every time I went to pet him he hissed.  I didn't know turtles hissed!


Next we got to fishing.  Ashton got the fishing poles ready and we then got to it.  I've decided if I ever had to live off of the fish I caught I would die of starvation.  This fish were biting, but I just couldn't get one on the hook to save my life!

I'm sad I didn't take a picture of Abby actually fishing.  Once we started fishing we didn't stop.  We had a lot of fun.  A bit later Ashton's dad and sister joined us, then finally Jodi, his wife, came.  What a pleasant family.  I have know Jim for several years through work.  Jodi and Ashton are the cutest couple on the plant.  They are all just good people.  It was so relaxing chilling with people that you just instantly feel comfortable being around.  Reminds me so much of my awesome family!

Jim helped Abby out.  Once again those fish were teasing us.  They'd nibble the bait right off the hook.  So none of us were catching anything.  The fish were even jumping out of the water really close to where we were dropping the lines.  

We decided to build a fire and roast some marshmallows for s'mores. I love using things like Reese's Peanut Butter Cups for s'mores.  This time I bought Ghirardelli caramel chocolate squares.  YUMMY! They are the perfect size and the caramel was delicious.  That's a keeper in the gourmet s'mores line up!

Jodi ended up coming when we were doing s'mores.  She cast the line in the pond a few times.  No luck for her either.  She decided to throw a marshmallow on and still nothing.   THEN came the pizza crust.  FINALLY Jodi catches a fish!  

I reeled one in as well once I put pizza crust on the hook.  It never got out of the water though.  I got it all the way in and when it hit the bank he fell off the hook.  Easiest catch and release ever!  Ha, Ha.  {Just so everyone knows.  This is a private pond with stock fish. We know you can't use pizza crust as bait!}

At this point Abby's inner pyro had been born.  She was running back and forth from the dry grass to the fire pit keeping the fire going.   It cleaned up the are quite a bit.  So win win.  

We spent a little more time playing around before heading back to Ashton's and Jodi's house.  As we were driving past the cattle pastures Abby got totally tagged by the irrigation sprinkler.  Ha Ha!  She thought it was hilarious.  We spent a little more time hanging out in the backyard and playing with Zeus there totally cute pup.  We had an awesome time!  Abby would totally do that every single day if she could.  Best Day Ever!!!  

Rituxen Treatment 2

Written May 28, 2018

I got a message from Dad wondering if I everything was okay 'cause he hadn't heard anything in a while.  I have realized that it's been one of those periods in life where 1 day quickly turns into two weeks.  I keep thinking I need to update and then I procrastinate and here we are now.

To date I have done 3 Rituxen treatments.  I posted about the fun times had with round 1.  Round 2 and 3 have gone well.   I have a new arch nemesis named Ben.  Benadryl to be exact.  I get super hammered on 25 mg of Benadryl.

Round 2 - Thursday May 24, 2018

I get put at the end of the "hall" this time.  I have never been that far in to the bowels of the Infusion Lab.  When I was there receiving blood products during chemo therapy last time I was extremely immuno suppressed, so I always got a private room to keep me away from the germs.  Now I just get to hang with all the peeps.  Good times.

There is quite a line up of chairs along the right side.  To my left I had Mr. Old Man. To my right there was a doorless cubby with a mystery person snoring away.  {That's what we do...snore away.. I'm glad we all get knocked out in here}  The gentleman to the left was not to far from me.  If both of us extended our arms and reached we could give each other a high five.   {There was a curtain between us other wise I would have totally initiated that!}

I've decided to draw a diagram.  Otherwise the rest of this won't be funny.  I have never actually counted how many chairs and rooms there are so I just made all this up.

*This particular area that I am in has lots of line of site issues.  With the doors open I am literally able to see into the eyes of every person that was in the rooms around me. Nothing awkward about that!  Not that it would matter for long.  Remember Ben.

I could NOT stay awake for the life of me!  I asked the nurse in the beginning how long this infusion was going to take.  I was previously told that the first round would be 7 hours because of how slow they had to let it drip in. {And...you know...the convulsions}  The second and each following treatment should only take 3 hours.  She was hesitant and said lets just see how it goes and wouldn't promise me anything.  {spoiler alert: it took 7 hours! Boo!}

After the Benadryl was administered I fell asleep.  I didn't even hear her come and up the drip rate.  I really new I was sleeping hard because my neighbor, Mr. Old Man was gone and there was a lady next to me now.  Getting up to powder your nose is also super fun on Benadryl.

How do I know I was sleeping hard?  Mr. Old Man was really Mr. Funny Old Man.  He was chatting it up with the nurses and telling jokes and stories.  You know... "Old Man" stuff.  {Was that "Geriatrically" insensitive?}  He did not come in quiet so I know he didn't leave quiet.  Plus when you get shown in there is lots of stuff that is happening with the LPN/CPN doing vitals and the RN getting things going.  Also, we all come there a lot.  When you start having to go to infusion it's a party.  You've got to say hello to all the nurses as they pass by.  It's a positive social atmosphere.  So even my new neighbor had to have made quite a bit of noise coming in.  I slept through it ALL!  One minute Mr is there and than the next it's Mrs.   Uhhhh????? 

It was very disconcerting sleeping that hard in a public space and we aren't done yet!  Next a guy comes in across the hall.  Again I can make eye contact with him because he is sitting on the bed DIRECTLY across from me.  As I mentioned before there is a lot of conversation between him and the nurse and while this is going on I start to fade out again.  Who knows how long it is before I woke up again.  But when I do there is a little boy staring at me from the doorway.  WHERE DID THE GUY GO!  WHO IS THIS KID STARING AT ME!???   His mom was sitting in the chair beyond where I could see her and he was just looking around.

I just have to say I hate the feeling of being awake on Benadryl.  You're supposed to be able to hop in bed and go to sleep.  I rarely take it, but when I do,  it's right before bed when I have really bad allergies.  Mostly because I know if there is something the Benadryl is working at counteracting it hits me hard.

After 7 unexpectedly hours I finally got to run away!  That experience was just over all creepy.
Also I had to track down a way to get Abby home from school.  The hospital make your phone go into the twilight zone sometimes.  Luckily Don, Heidi and Grandpa Ken saved the day again.  Abby made it home!

Chemo 3!

{I never published this way back when.  Probably because I was updating on Facebook} 

We are already on to Chemo 3!  Moving right along!

                         IN                                                                                OUT



Chemo Cycle {21 days}

Day 1-3:        Chemo at the LDS Hospital

Day 5:           Neulasta Shot Logan Regional - This gets the White Blood Cells in my bone marrow all                       fired up.  It has the potential to cause some serious pain in my bones.  Feels as bad as                           growing pains on crack or as minor as flu aches.

Day 3-10:      During this period they are expecting my blood levels to go down.  This is when I feel                         the crappiest.  The Neulasta Shot stays dormant until the levels go back up and then                             BAM!  Bone Pain.

Day 10-21:    Nadir Period -  Back to Loveland Clinic in SLC.   Meet with PA's and Doctor first day                         and then the days after that I get my blood checked regularly to assess the need for                               transfusions.  This is normally done with me and a caregiver staying at the lodge so that                       I am close to LDS Hospital.  At the end of all this I am reassessed to make sure I am                             good to go for next round.

Tuesday August 30th

I always start in the Loveland Clinic downstairs where we do the PA/DR assessment.  This round I had PA Nom - Dr. G.  He is one of my favorites.  Maybe because I see him more often then not.  He tells me this time that he is fighting to let me do the Nadir Period in Logan.  I have proved that I do well when my counts are low so I should be okay.   I have to be diligent in calling about things when I don't feel well.  Even things that are typically normal, but I would just suffer through have to be called in.  NOTHING IS NORMAL WHEN  YOU HAVE CANCER.  IT SUCKS!

I would like to be in Logan for many reasons but a big reason is I don't have to feel guilty about having someone staying with me at the Hope Lodge.  I feel bad that I have to pull my Sister and Sis in Laws away from their families for a week at a time.  Plus it isn't cheap.  Travel is costly.  I am grateful that the Lodge is there.  It is just hard coordinating people to stay with me and transfer food and packing.  So yay!  I told him I would do whatever they felt was right.  Not every one on the team is okay with it.

I get told that I am only in the hospital for 24 hours.  Well great!  I packed for 3.  I had no clue.  So this will be a dump and run chemo session.  I am not going to cry about it too much 'cause as I said in my last post it smells awful and I can't bring myself to eat here.

Speaking of Eating

I feel like the only cancer patient on the planet that doesn't loose weight having chemo.  WHY?!?! Shouldn't that be a perk to all this!  As long as I'm feeling like hell, shouldn't a fatty like me come out on the other end of this having had the best diet plan ever!  Perma-nausea.  But no I still have my appetite.  {Unless I am in the hospital}

I have a theory for why this is so.  My biggest trigger to my migraines is low blood sugar.  I can't fast! If I don't eat once I start feeling hunger pain I am toast!  We've been over this. Remember the fasting for surgery and CT scans.  Just kill me now!  I have a few OTHER triggers, but that one will trigger a migraine all on it's own every time.   Because of this I make sure I am NEVER hungry.  Biggest theory for why I am a fatty as well.  Just sayin'!

So if I get a migraine one of the first things I do is pop pills, and then EAT!  Get food in there to regulate my blood sugar and then go to bed, in my dark room, with my fist in my face 'cause that is were it hits hardest.

So my NEVER BE HUNGRY solution has made me eat when I am pretty crazy sick.  Just so it doesn't turn on me.  So now during chemo I don't care if I feel like puking.  Nothing is worse than a migraine!  EAT!

Then of course on days when I feel good I just eat because I can.  Barb told me now is not the time to loose weight.  I should follow my Dr's orders.  Right! ;-)   Fatty for life!

Wednesday August 31st

I get to Nadir in Logan!!!!  They are going to let me do it! I am sad on one hand because Sarah was going to come stay with me this time.  That would have been a serious catch up session!  Especially since she is the sister I see the least often.  So I was pretty sad about that.  But on the other hand so crazy pumped not to have to sit in that room at the lodge!!!!!!  Plus I just get to be home.  Home is good.

Cindy and Ken come back to get me.  That was quick!  It took a long time for them to discharge me this time.  I JUST WANT TO LEAVE!!!  They must have noted my frustration because the Dr on day 10 mentioned something.  If I can help the process along I am grateful to help.  I will discuss that later.

Thursday September 1 

Happy September! The days and nights are getting cooler and there is that lovely crisp in the air!  Fall is on it's way.

Today I go into Logan Regional for my Neulasta Shot.  In it goes and I get my Daffy Duck bandaid. Even adults in the transfusion clinic love there character bandaids! LOL!

Friday September 2 - 7

I have a post op visit with Dr Woods on Friday the 2nd.  He checks out my incision site and everything is looking good.

The first couple of days after chemo are my big puke days.  Labor day was a doozie.  I take lots of my anti-nausea meds to keep that under control.  The med I like the most works fast, but is also a sedative.  The other one works longer, but not as well as the other.  I also start to weaken because counts are going down in my blood.  I take lots of naps.  There are a few other things that happen as well.  I need to document them somewhere.  It's the TMI list of cancer.  The stuff that you only talk to your doctors about.  It really is just Too Much Info to write anywhere, but it happens.  A lot of that stuff happens the week after chemo.

Thursday September 8 {Day 10}

I am back in SLC for my visit.  I get to meet new people today.

• Get blood drawn by LPN.  She also does line care on my Central Line Catheter.  She flushes the Heparin out and cleans the spigots.  She draws blood and sends it to the lab.
• I go to a room where I wait upwards of 45 minutes. Labs take a while to process.
• Meet with PA and then wait for about 30 minutes
• Meet with DR and then go home. {Chemo round I get admitted upstairs}

That's the run down on my visits at the clinic. 

I meet with Steve today.  Another Super awesome PA.  I talk with him for about a half an hour.   It's nice that I get to spend time with the PA's cause they go over everything thoroughly.   

Rituxen Treatment 1

Thursday May 10, 2018

Time for some chemo at the Logan Regional Infusion Lab.  10:00 am!  I get there and sure enough all the nurses were noticing me and giving me the "glad to see you NOT glad to see you" greeting.  They are all still there!  All the nurses that gave me pints and pints of blood products.  

This time I am led to a chair out in the open.  I used to get a room.  It was odd.  They were able to pull the curtains around it.  I was given 25mg of Benadryl and some Tylenol.  These are the regular pre-meds for Rituxen. 

Let's tell a story about Rituxen.  Once upon a time I had Rituxen for the first time. Once upon a time it gave me major convulsions.  During this first treatment I had the reaction that they always warn about.  Nobody every gets it that bad.  Once again, way to be special Amy! 

Most reactions to these medicine don't happen. Even when they do there are not severe.  Go big or go home!  So the last time I had this I had the big reaction.  When I was talking to Julie during my education class I told her about my reaction last time.  "Wow... You've had the full on convulsions, we've never seen that here".  She told me to make sure the nurse new that so they could be prepared.  The nurse even called Dr. S ahead of time so that she would know what he wanted to do.  He said let's just wait and see. 

We were hoping that since my body reacted the first time and did better every time after, that we would be good now.  BUT I just got a stem cell transplant that resets the immune system.  My body most likely would not remember this foreign protein in my body and attack.  Did I mention that this drug is made with Mouse Protein.  Sounds yummy doesn't it!

So we wait for the Benadryl to kick in and it does.  I was plastered.  It hit me like a ton of bricks!  Once that is in the system the Rituxen drip starts.  I went for 30 minutes on the slowest drip.  I am scheduled for 7 hours in the lab because this is going to be a slow process.  They are just trying to slowly introduce the proteins to my body.  SO after 30 minutes they ramp it up a notch.  I will stay at this rate for about an hour.  IF I MAKE IT THAT LONG.  Bwa ha ha! 

So she leaves me behind my curtain to fall back into my Benadryl induced coma.  All of the sudden my throat starts to itch.  Then it started to burn.  Then it started to swell up.  I've been having some allergy problems lately because of our lovely dry spring and I didn't think too much of it.  I just kept sipping some water.  But then it got really bad.  

THEN my lip started to twitch.  THEN I remember that this is one of the first signs.  In my head I was trying to remember if this is what happened last time.  I started to get really agitated.  Just squirming around in my chair. I was getting really uncomfortable fast!  I hit the nurses button and Jen was with another patient so Mitzy came over.  "What's going on?"  I told her something's not right.  And then BAMB convulsions.  They started off small.  I was under a pile of blankets.  This drug causes mild flu like symptoms in most people.  So the chill before the burn.  

She couldn't really see the spasms at first. The CNA came over with more warm blankets thinking it was the mild chills version of the reactions.  Then they got worse!  "Oh I see them now".  She had to shut off the drip.  Jen gets over there and she goes to call Dr. S.  "She's having the big reaction like before what do you want us to do?"  I got 50 mg of Benadryl on top of the 25 mg I already had in my system.  It took a long 30 minutes for the convulsions to stop.  I'll be honest it made me cry.  It is a very uncomfortable process.  My body was automatically trying to counteract the involuntary spasms in my muscles. It hurt. So I would clench up every time it happened.  And they were everywhere.  The worst ones were up in my right shoulder chest area.  Right where the port was.  That actually makes sense.  They all work there way down to my legs. So everything was convulsing all at once.  

They had to wait for the Benadryl to do it's thing.  I had one of the CNA's sit in a chair and say she is there to sit with me, while Jen and Mitzy go take care of the other patients.  They closed the curtains so no one could see me convulsing and she had it open just enough so she could see me.  She said, "don't feel uncomfortable I'm just going to sit here and stare at you"!  I laughed.  That was the least of my worries. 

After the long process of waiting for my body to stop involuntarily twitching we got the Rituxen going again.  With that much Benadryl in me nothing would bother me now!  I was able to finish the last 6 hours of treatment with out anymore complications.  Well except for being able to be awake.  I was incoherent.   Even my speech was slurred. LOL!  I slept really good.

Luckily the Benadryl wore off before I had to leave.  I kept noticing that they asked the other patients who was picking them up.  Or orderlies were coming to take them downstairs for their ride.  I was starting to panic.  I drove myself and I would be driving myself home.

Side Note:  When Heidi was there to pick me up from my port placement surgery the nurse was going over my follow up care.  The nurse asked her if she would be the adult taking care of me for the 24 hours post op.  She said no.  Then the nurse asked if I would have someone with me.  I said uhhh....yes.  She asked who.  I told her my daughter.  "Do you feel your daughter is adult enough to provide the adult care?"  Uhhhh....yes.
I gave Heidi the bug eyes and she knew to just go along.  I can't always have people with me! Dang it!

So luckily I wasn't one of the patients they even bothered asking.  I just ran away after they were done with me. RUN AWAY!!!!! LOL!

Even with 7 hours of a Benadryl induced coma I slept REAL good that night!

That's the end of my super fun week.  I really hope things can mellow out for awhile now that everything has been situated.  I don't even want to bother with the mad scientists down at LDS hospital for a while.

PORT PLACEMENT DAY

Wednesday May 9th 2018 

Today I have my appointment to Chit Chat with the surgeon about getting my port put in.  I show up to the Budge Surgical Center and it's like they knew I was coming and to batten down the hatches. I wasn't sure where I was supposed to be so I walked up to the desk and said, "I'm not sure if this is where I am supposed to be", and she said, "it is".   Did she have a picture of me?  How did she know who I was!?  I hadn't even given her my name. "It's that crazy lady that yelled at us last week is coming!  The crazy lady is coming"!

I get shown back to a room, go over the SAME questions that I have answered ..... 5 times now in just as many days.  Dr Marshall comes in and he is totally cool.  He had gone over my charts/history and was like, "wow.... you have been through the ringer the last couple of years"!  He went over where he was planning to put the port and so on.   He asked when I was doing the first Rituxen treatment.  I said tomorrow.  He then was like, "when did you eat last"?  "I had had a smoothie for breakfast".  "Hmmmm.  Let's do this today"! 

This is one of those times when it is okay for a Doctor to say LET'S JUST DO THIS!

Cindy Mama was having a kidney biopsy done that day so I just had to add another thing to the fray.  I went back to work and they called to say I should be there by 2 pm for a 3 pm surgery.   They then called to bump the time by an hour.  That was very nice.

Ken dropped me off and I skipped up to same day surgery.  I'm becoming an old pro at all this.  The nurses, "uh...weren't you just here"?  Yes. 

I only had to wait an extra 30 minutes.  They had me back by 4:30.  I was under light sedation this time so I remember being there, but it was an hour surgery and it felt like 15 minutes.  They heavily sedate you during the really gruesome parts and bring you back up for the end.  I felt some of the last stitches.  Dr. Marshall could tell because I was cringing.  He blamed that on the anesthesiologist.  "Dang it Brian!"  LOL!

I got back to recovery and only had to wait about a half hour and Heidi came to take me home.  I started to just walk out and the charge nurse was like...."Uh.... no!  You have to get in the wheel chair!" 

SIDE NOTE:

So when I got my first port Carol had told me to get a prescription for topical lidocaine for when they access the port.  The nurse at my education said they would be giving me the prescription for lidocaine for the same reason.   I couldn't figure out how that would work. What are you guys talking about!  I finally figured out that this is not the same type of port that I had before.  The wound was never accessed unless it was being cleaned. I always had bandages over my port entrance.  So I couldn't see how I would be able to put lidocaine on it.

Now I know.

WARNING SKIP THE NEXT TWO PICTURES IF YOU GET WOOZIE! Actually I found some non gruesome ones.

This is a Hickman Port:

Ignore the other writing.  This port is always under a sterile dressing
with what we aptly named the "spigots" always sticking out.
There was no way to put any cream on the wound.  The spigots
are what they drew blood from and administered drugs through. 

And this is the portacath which I just had placed:

Always under the skin. It actually has a chance to heal. This one is healed.

They actual place a line each time they use it to draw from using a needle just like getting an IV. 

NOW I know why Carol said she kept hers in.  I never would have been able to keep the Hickman in.  And now I see that you can put a cream on it. 

It's all so clear to me now.  We had two totally different ports placed.

Even when I was going over things with Dr. Marshall I could tell he didn't quite know what I was talking about.

Dr. Marshall really was cool.  He even placed the access lines since I was going in the next day that way they didn't have to aggravate a newly placed port.

Job well done! So happy something went well this week!

I've got a port Yo!  Broke out my old trusty swim suit
cover up that I used as a robe during all my other treatments.

Oh...What a Week!

Monday May 7th 2018

Debbie has come down again to drive me around Salt Lake.  Last night I took Abby over to Heidi's again so she could get her to and from school.

My first appointment was at McKay-Dee in Ogden for the Lumbar Puncture at 8:20 am.

 {Lost this picture not sure where it went}

We got there and I had to get gowned up.  We always enjoy being weird and taking pictures.   I'm sure people walking by the dressing room were wondering what all the giggling was about.

Ta da!  Ready for my close up!

Cheese!

I got sent back to the surgical room and Debbie got sent back to the waiting area.  I was given the down low by the surgical nurse.  We went over the procedure.  I asked her how it compared to a bone barrow biopsy.  "Well we don't sedate you for this like they do the bone marrow biopsy".  I have never been sedated.  They sedate people!  Why wasn't I given that option!

She also went over the post procedure care and told me I would lay on my back for about an hour in recovery and that I should be on my back for 24 hours after that.  This was to prevent the massive headache that can occur if too much fluid continues to leak from the site.   I told her that would be a problem because this was the first of 3 appointments I had that day.  She would have to check with Justin the specialist doing the lumbar puncture.  I was only given a first name he could be a janitor for all I know.

When Justin came back to start things up the nurse told him about my appointments.  He said, "ahhhh just take it easy, lay in the car flat as much as possible and then just don't lift anything".  So much for going to IKEA while we were in SLC! 

I get up on this super high tech table that floats off  a C, or quarter moon shaped arm.  The table raises all the way up so that I am at the height comfortable for the janitor to preform the Lumbar Puncture.

I asked him what the pain scale would be from 1 to... say... bone marrow biopsy.  He laughed.  "Well we don't sedate you for this so it could be pretty bad".   AGAIN why was I not sedated at all for any of the THREE BMB's I have received!  Geez!

I told him I was never sedated so he comforted me by saying this would be a cake walk after that!

I don't know if it's all in my head but I am getting less tolerant of the needles and the "this will be just a pinch" nonsense.  I have never been one to be scared of needles but I was just about done being poked and prodded!

I felt the pinch {sting or burning pain} and then a portion of my back went numb.  I pictured a stack of books resting on my lower back.  The rest was pretty tolerable.  He did nick a nerve and I did the whole scream and grab the table thing.  "Hold still! You're doing great!"  Aghh!

I was a little bumbed that he didn't do a play by play.  Lots of procedures were I am NOT sedated they give you a little move by move narration so you know what is going on.  "I'm just hammering an 8 inch needle into your back".  I was going to ask "what's going on back there!?" ,but felt maybe this guy can't talk and chew gum at the same time.  So it was best to just wait 'til he said something.  It felt like it was going on forever!

Finally he said I just have one more tube to fill and we will be done.  Once he was done I got wheeled back to recovery to lay on my back for an hour. They grabbed Debbie from the waiting room and we hung out for a while.  Discussing how we could make IKEA still work.  Maybe we could make a bed by getting a mattress and one of the flat bed carts.  She could just pile stuff up on top of me.  I think that would totally work!  Then we discovered it is still an hour drive from Ogden to IKEA.  Why does it have to be sooooo far south!

At this point I was beginning to feel very beat up.   I was laying on my new wound and laying on my bone marrow biopsy site from 3 days previous.  My head is still healing from the biopsy on my temple and whenever I lay down flat it throbs.  I had to ask to be elevated so my head was at least above my heart. What else do you want to do to me!  Bring it!   {oh...we aren't done yet!}

Laying flat for a while!  With my heart monitor on.  Vitals?

Well after an hour we get to take off.  Todd the recovery nurse said the same thing as Janitor Justin.  Just take it easy and lay in the car for as long as you can.  Debbie and I have still have about 2 and a half hours before the appointment at the Loveland clinic.

McKay-Dee done!  Where to next?

We decided to go to In and Out Burger.  I haven't been there since we were travelling down to Grandpa's funeral February 2016.  So In and Out Burger it is!  We decided to be rebels and eat in a covered parking garage that said permit only.  Livin' on the edge!  We killed a little time eating before heading to Salt Lake.

It actually kind of worked out that we were able to drive around and look at some of the super cool houses up by LDS hospital and then just head up to the appointment.

They drew labs like usual.  I was brought in by Andy one of the nurses there from last time.  When she saw me she was like, "Booo!  I thought I recognized the name.  We don't like to see this!"  One of many good to see you NOT good to see you moments.

We get put in a waiting room to await the history update and follow up from one of the PA's.  Again I am sure anybody walking by would wonder what all the giggling was about.  I told Debbie about the experience of me trying really hard not to fart while the Janitor was doing the lumbar puncture and you know farts = giggles!  Bwahh...ha....haaa! 

Soon the PA came in and we spent lots of time going over things that have already been gone over before.  I still don't understand the medical professions complete lack of central databases.  Let's EDIT my profile.  Let's UPDATE the information.  Oh no.....they like to start over ever time in EVERY office even though they are all part of the great Intermountain healthcare system.  I'm not bitter.  Lately I've been obnoxiously writing, "please see my charts and please consult the list of meds in your data base" as a subtle clue that they already have this information.

Next came the part where they go over family history.  Which by the way I already did this less then a year and a half ago.  UPDATES people!  I was waiting to get to Debbie so I could tell the PA that she had mental problems and that her twin was still encased in her body and I missed the opportunity.  I though we were on Sarah and lost my chance!  Dang it!  "Oh wait that's Debbie"!

We didn't have to wait for the 3:30 appointment with DR. Gouwe he was done with his last appointment and we got taken to the conference room.

THIS IS WERE I GET REALLY CONFUSED AND I'LL BE HONEST MAD!

So much information was given during this meeting.  Here is the whole conversation in a nut shell.

"We aren't even sure the cancer is back, but lets do a super lethal stem cell transplant on you any ways"

The very first thing he talks about is the fact that we have rediscovered the "cancer" almost too soon.  When we talk about staging I wouldn't even be stage one. The mass in my head is a mystery.  Ever Dr that has seen it say, "that's interesting".

I asked him if the pathologist didn't know what the "mass" was and linked it to my previous cancer cause that is what was on my charts.  The "mass" itself definitely was lymphoma, but did it have Mantle Cell markers?  There aren't even lymph nodes in the area were the mass was taken.  This could be why they did the lumbar puncture.  What is going on in the central nervous system?  The PET scan showed a few lymph nodes in my neck.  Dr. Gouwe suggested that it could be possible that the dye leaked into some of the lymph nodes.  It is normal for the dye to get into healthy parts of the body like the heart and lungs.  The only way to tell if the nodes were really a problem would be to do a needle biopsy.  They are TOO small to do that to!  HELLO!!!!!

So why are we there?  They are going over the treatments we can do at the end of my summer of chemo.

Anybody else confused?

We are told that the Rituxin and Imbruvica can be something I stay on for a long period of time.  Imbruvica is a drug that can keep the cancer at bay.  {Since we don't even know what is going on I vote for that.}

Second he goes over the CAR-T therapy.  They now train T cells to identify specific markers in cancer cells and go after them.  Oh but it is still in trials for Mantle Cell NHL.  It has been approved for all sorts of other cancers.   The trials are full and they only do that in California, Colorado and Washington.  That would be doable.  Erin lives "near" Seattle.  Maybe that could work.  Thanks for telling me about something cool that I can't even do.  MAYBE it will be approved after I stay on Imbruvica for a while.

OKAY here comes the part that really does make me angry.  THE DONOR STEM CELL TRANSPLANT.

Horrible, Horrible, Horrible,  Die, Die, Die,  Low chance of survival, if you survive it a low quality of life,  torture all of your siblings for a match,  they don't pay for lodging or travel for sibling that does match, stay in SLC for at least 100 days and possibly more after that.

Nothing about this sounds good.  Sounds like a last resort type of option to me.

OH and by the way.  IN THE WHOLE WIDE INTERNATIONAL DATABASE OF STEM CELL DONORS THERE IS NOT ONE SINGLE MATCH FOR ME!!!!!!!!!

Not only is mantle cell rare, not only did I come through the auto stem cell transplant in a matter of weeks not months, I get to be such an odd duck that I don't even have any matches for stem cell donors!

Way to be special Amy!

Next Dr. Gouwe tells us all about the match options.  Having a exact match donor would give me the greatest chances of getting through the process with the least amount of long term complications.  IF it even works.

There is also what is called a half match.  This lessens the odds.

This is when he really just goes crazy.  "I think we should do the stem cell transplant NOW.  Your body is disease free so now would be the best time".  Can you just imagine the face I gave him!

What!?

He goes on to say that it is a big debate in the stem cell transplant arena.  He was at a symposium were it was so heavily debated that people were YELLING at each other.  I can see why.   Why would you take a person who is showing no disease and drop a bomb in their body on purpose.  That would be knocking on Death's door.  No thank you.  I would rather die of natural causes.

Don't tell me in on one breath that I have no tangible sign of pin point-able disease and then tell me in the next that you want to try and kill me!

He then leavse to go to another appointment.  He really wants to do this.  Thank goodness there is a tumor board and there are SEVERAL Doctors that will think that one through. If they don't come to a decission they will consult Texas the Mantle Cell research capital of the world. 

We stay with Cindy the coordinator and she goes over the sibling donor match process.  She is ready to take Debbie down right then and there to get her typed.  I said no!  We will wait 3-4 months 'til after the Ritximab/Imbruvica process before we even think of doing that!

I am starting to feel like a Guinea Pig.  Like it was prearranged that they would come to that conclusion.  Lets use the girl that went through the auto stem cell transplant in record time to see if she can do a donor one just as well.  Even if there is no reason to do it yet.

He came BACK into the room and said he really thinks we should do it.

Again....WHAT!?

I left there just a little peeved.

I'm just going to put myself in a blissfully ignorant bubble for the next 3 months. I'm just going to plug along on the treatment schedule that Dr. S has prescribed and hope for the best!  La, La, La!

That was only Monday.  I need to start a new post for the rest of the week.

A lovely view of the State Capital during the spring.

I do have to mention that Debbie wants a T-shirt that says  "I am an adult. I can drive in SLC!  Thanks Debbie for getting us there and back again without killing us!  Your an adult!  Gold Sticker for you!

Thursday May 3rd

I had my doctor's appointment today to tell me all about what they are going to do to me.  Boy is this the beginning of a wild roller coaster!

First of all I came with my list to make sure that I asked all the right questions.

Besides finding out that the cancer is back I still had questions from all the medical mysteries from before.  Like for instance my Thyroid.  At my last appointment he had the nurse draw some bloods to do some labs.  So I asked how those turned out.    Crickets.... Uh nothing is there.  Apparently they didn't send anything over.  Don't know why.  So this is when the whole appointment goes kind of weird.  I'll be honest I still don't think I have any labs being sent over for my Thyroid.  I will keep that one unchecked. ???

How about my Liver?  It is on the fritz.  I am sure more "chemo" is going to make that feel real good!

I should have written all this down that night but I was so frustrated. Chemo brain is making it hard to remember the details.  Between the appointment on Thursday and what happens on Friday it is all a blur.

Back to this appointment:

Next question. Will I loose my hair?  NO.  Thank goodness. That was easy!

Next:  I am nauseated and dizzy.  That's weird.  This may be from the surgery I just had...right!?

Next:  What are we doing? And for how long?   How long...3-4 months.

What are we doing?  I was told that I would be getting the pill Imbruvica, and I told him that the Biologics Pharmacy had called. Those would be arriving at work that day.  They were over-nighted and had to be signed for.  So work it is.

He asked if I had a port.  I said no.  NO... I DON'T HAVE A PORT!  WHY WOULD I NEED A PORT!!!

So I am NOT just taking two pills.  He explained that the pillzzzzz... plural... he was talking about was the Imbruvica.  Sometimes it comes as multiple pills. In this case it is all in one dose.  So I AM having to do the Retuxin at the infusion lab!!!! Aghhh!   Booo!  Hisssss!   Whine!!!!! Grrrrr!!!!  On the floor rolling around throwing a fit.  (Just kidding that is only happening in my head.)

He then leaves the room (probably 'cause I'm loosing it) to see if Jody the scheduler was there.  We have to start making appointments.  Don't start the Imbruvica cause that causes weird bleeding and then you can't do your surgery to place the port again.  We need to do a bone marrow biopsy.  (Which I was hoping they would have set up for THAT appointment but they didn't.) WHERE IS JODY!   Oh and we want to do a lumbar puncture cause that sounds fun! What... what!  Slow down I can't write that fast.  (Oh...hey...I wrote stuff down I should go get my notebook.)

What is happening!

We finally find Jody and I get set up for the Bone Marrow the next morning at 8am.  Yikes!

I go to work.  I was planning on taking that day off thinking that I would have just had my biopsy but I didn't so off I went.  Good thing I did because friend at works Grandpa passed away and he wasn't there.  That was really sad because his Grandpa lived with his family since he was 3 years old so it was a rough blow.

Now the rest of the day was super stressful.  I am so glad I have chemo brain and can't remember the details, but it was one of THOSE days.  Were everything that happens you yell REALLY! in your head, because it is ridiculously ironic that that much crazy shiz can happen in one day.  We will forgo the details.

Oh...I might mention.  When the pharmacy called to go over things with me they asked 3 questions.

Are you taking any other medications?   No.
Do you have any other issues that are being treated?  No
On a scale of 1-10 what is your stress level?    I just chuckled.  I'm a single mom, working full time at a CRAZY job and I just found out my cancer is back.  Six.... I just told her six.   I guess stress is a bad thing for this drug.

I might need to put myself in time out from time to time. 

Friday May 4th -  MAY THE FOURTH BE WITH YOU!

It ends up being a funny day because of the Star Wars phrase.

I am always excited to wear my Star Wars shirt on May 4th.  That's it.  I do get reverential nods when people see it.  It's cool because it isn't obviously nerdy.  So it gets a second glance.  Wait.... was that Star Wars!  Mmm Hmm!





So I go to my appointment and hop up on the table and face plant it into the pillow.  The nurse has everything set up.  Petri dishes, microscope slides, testa tubs, aspiration needles, bone saw {just seeing if you're paying attention} etc, etc.

The doctor comes in and he is filling in some paper work.  "Man they changed the forms again.  I just got used to the old ones.  I knew where everything was that I have to check things off."   I tell him it really stinks because then you have to read everything again.

Let's go off on a tangent:  My Doctor is from Latvia.  I am not sure how well versed he is in American sarcasm.  I am not well versed in his reverse sarcasm.  Did I offend him with my comments or can I not decipher the sarcasm in is responses?

Yesterday I was telling him about my other bone marrow biopsies, because he wanted to know how they went.  I told him the first one didn't go well.  He made me stand up and he felt my hips where they do the aspiration.  He was nervous about what size needle to use and if they even had one.  I told him that my bones a really dense.  First time they had to go get Peter.  "Who is Peter"  Oh....at LDS hospital. 

Tangent to the tangent: It has been really interesting as I am doing this again that I really didn't get the full presentation before I started things last time. I will go over that in detail later.   I really was kind of this odd duck being tossed around.  Who did I belong to??  When I went in to get my PET scans they were puzzled about who I was.  "Oh...you did your treatments at LDS?"

Back to Tangent ONE:

Who is Peter...?  When I was getting the first BMB the nurses could NOT get into my bone.  "Are your bones made of steel!" So I told that to Dr. S only I said, "they asked if my bones were made of frickin' steel"!   He just says, "well I hope they didn't say it like that".  Just in a flat tone in his latvian accent.  Didn't know if he was being serious or sarcastic.  I may never know.  LOL!

Tangent Three:  Dr asks about my other BMB's.  This comes into play later as well.  First time they have to go get Peter to put some "man" strength into it.  (By the way there were two student nurses there and one of them almost passed out.  They really have to lean into it and dig around.)  The second time I told him I was clotting fast and the numbing agent was wearing off.  So they said if I stop now I will have to start over and re-drill.  I told them to just do it.  I will do lamaz or something and just breathe through it. Every time they sucked the plunger to aspirate the marrow there was terrible pain.  THEY HAVE TO GET LIKE 10 slides, 1 petri dish and 3 VIALS OF THAT STUFF!!!!  I was sweating by the time they were done that second time.

Okay back to the appointment.

I've possibly offended the Doctor by telling him he may have to actually read the paper work!   This is the guy that is about to hammer an 8" needle into my bone.  I may want to be careful from here on out.

Nope.   He then asks the nurse what day it is.  He says I think it is May 5.  I say, "Nope...it's May 4th.  Why do I know this?  Because I'm a nerd and it is Star Wars day.  May the FORTH be with you.  Get it"?   Doctor says,  "what?"  Nurse goes off on how her soon to be daughter in law is a big Star Wars fan and would love if she texted her that phrase.  So we talk for a bit about Star Wars while the Doctor is getting geared up.

I get numbed up.  That hurts.
I get stabbed. That hurts and I almost puke. (Remember I've been nauseous because of the surgery)
It takes a minute to get all the marrow out because again I am clotting.
He then does the part were he really has to dig around and get a chunk of my bone.  AGHH!

Yes you can feel it.  Not like going to the dentist were you are numb but you can still feel them moving around in your mouth.

THIS HURTS!  Just breathe!!!!  They can't numb your bone.  They only numb the nerves and tissue surrounding the bone.

Okay so it's done.  He asks how it went.  I said, "it hurt".  Doctor, "Well I hate Start Wars!"

What did I say?  It must be a doctor thing.  Maybe there is a competition to see who can make a BMB not hurt?  I don't know!?  Apparently I hurt his feelings.  LOL!

All is well.  He has two more bone marrow biopsies to do so he takes off. He gives me a hug like he normally does so he can't be too mad!  Hopefully no one else mentions Star Wars.

I get some other blood work taken and then I have an education session with Julie the RN.

This is were I get back to the second tangent.  She educated me on EVERYTHING I needed to know about what was happening.  Every side effect.  Every drug that Dr. S has scheduled to counter said side effects.  How to treat secondary discomfort and EVERYTHING! 

There was sooooo much stuff I found out about AFTER I was done with chemo the last time that no one ever told me about.  Here they did education. 

I love the Loveland Clinic but there are almost too many people involved.  Each person there is great, but it comes down to the too many cooks in the kitchen thing that I feel led to some things falling through the cracks.

I am glad that I get to have a little more personal focus this time.

ALSO I found out that I CAN go to the emergency room here and they are GREAT with cancer patients.  LDS made it sound like I was risking my life going home in between treatments last time because the neanderthals up in Logan would kill me before they figured out what was going on.  Julie told me IF I was to ever have to go to the ER that they have Oncologists on call 24 hours a day.  All of whom are connected to the Intermountain network.  The first thing I should tell them is that I am getting treated by Dr S and have they contacted the Oncologist on call.  Done.  Geez!

I got a SWAG bag full of goodies and a list of questions about what I have to do next week.

The rest of the day I field a billion phone calls from the various hospitals and pharmacies setting up appointments and drugs for the next couple of months.

At this point I have not updated any of the Facebook groups.  So I called Debbie.  I wasn't in the mood to type it all out yet.  I told her straight up I would have to hang up on her if I got a call because I was expecting all those phone calls to make appointments.

We only had to hang up about 4 times.  LOL!

Here is the low down:

Monday:  8:20 am      McKay-Dee Hospital for Lumbar Puncture
                1:30 am      LDS Hospital to do the things.  Paperwork??? Labs????                                                      3:30 am      Meet with Dr. Gouw and go over Stem Cell Transpland or other newer options                                     to keep me in remission.   {Dr. S already told me what they are but they will                                                                                       give me the finer details}

Wednesday:  9:40 am  Consult with the Surgeon about port placement.

[Commence Rant]   I got the call to schedule my consultation on Thursday.  {If you recall this was not a good day for me} When she said it was just a consultation for the surgeon to go over my records and explain the surgery I told her I have already had this surgery.  This is my second port placement.  Also if he has questions wouldn't he "consult" with my doctor?   Every other surgery I have had the surgeon quickly tells YOU what they are about to do and then they just do it.  I was just ready to get this stuff going.  She tells me he won't even schedule it until the day of the consultation.  At that point I was ticked.  I have to delay my first treatment because I have to "chit chat with the surgeon first"!.  Yes that is what I said. Not my proudest moment.  

"Fine I will be there at 9:40 on Wednesday to CHIT CHAT with the surgeon.  What a waste of time and money"!

So I hung up the phone and call Dr. S's office.  What the heck!  They said that is what they do if you haven't had that surgery before.  "Did you tell them you had one before?"  Uh...yes!  And I told her all the horrible things I just said to the girl setting the appointment.  In that moment I realize that this time around I am just going to be more angry and inpatient.  The nurse on the phone understood and said that she would talk to Dr. S. I told her she could tell me to cool my jets and chill out at any point.  I have given myself a talking to and I won't lash out like that again.

Don't worry! Now I am told that I will be doing the first treatment through a standard IV.  Then I will get the port put in and THEN I will start taking the Imbruvica pill so I don't bleed to death.   Glad that is all straightened out.


Thursday:  10:00 am  -  I will start my first Retuxan treatment.  SEVEN glorious hours in the                                                     infusion lab! Can't wait!

TBD: Surgery for Port Placement - Still to be determined.  Chit Chat first. {Still bitter}

Abby will be spending the night with Aunt Heidi and Uncle Don.  Thank you!  She is at the same school as Nick and Noah so they can all get to school and come home together.

Debbie is going with me to transport me.  I am super glad all the "appointments south of Logan are on one day.  I don't know how a lumbar puncture is going to feel.  Not sure it was a great idea to do that first, but there you have it!


Well it is time for me to get the CINCO DE MAYO dinner started.  So off I go!

Chit Chat

There and Back Again

A Cancer Tale

by Amy Cameron

Am I allowed to steal lines from Tolkien?  

or maybe.....

Cancer

the Desolation of Mantle Cell Non-Hodgkin's Lymphoma

nah...too wordy.  I like the first one better.

Anyways....   It's back!!!!

Story time!

I guess I can recap a little of my post chemo and stem cell experience up to this point.  

February, March and April 2017

I couldn't move after about noon each day.  Like physically... I couldn't move.  I was running on batteries that couldn't physically recharge.  My blood cells just couldn't do it.  This was normal and to be expected.  I went to work for the morning and then came home and passed out.  I couldn't eat.  My appetite was still suppressed. So seriously NO ENERGY.  I was still getting really bad and scary debilitating pains as well that would come and go. Boo! That is what was physically going on.  

Mentally I was depressed, confused and frustrated.  I cried a lot.  Often for no reason.  I was illogical in my thought processes.  I kind of just survived day to day.  I'm glad Abby is still here.  I'm not sure how.  I must have fed her enough.  That's a plus.  I am actually super surprised I made it through that part of the whole cancer process.  It was no good it was way worse than going through any of the chemo part of things.   I should have written more down it's all getting pretty vague at this point.  Chemo brain is real.  It was hard to function. 

Summer 2017

 I started my post chemo follow up schedule.  I hadn't heard from Dr. S and when I called to set up my follow up visit the office was a little strange.  Since I was juggled around in the beginning I wasn't really an established patient with Dr. S and the staff didn't quite know what to do with me.  Unfortunately right at this time I had gotten really sick and couldn't breath.  I called them because everything relates back to the cancer.  If I went back to my primary care and told them I wasn't doing they would freak out and call the oncologist anyways so they don't mess up.  Dr. S was out of town that week and they just told me to call LDS.  So long story short I ended up having my first follow up treatment with LDS hosptial Loveland Clinic instead of Dr. S.  Dr Ostranoff called down while I was there and made sure that Dr. S was on board with taking on my follow up care and all was well after that.  It wasn't really him it was his staff getting confused.  Oh well. 

Still feeling sluggish at this point, but not completely drained in the afternoon.  That is progress.  Appetite is getting better.  Brain function is improving, but still feel slow as snot!  I'm no longer completely depressed and my reasoning has come back.  Even looking back a year I was not right in the head.  

I spent a lot more time this summer going places with Abby.  One nice thing about surviving cancer is the I couldn't give a crap about anything attitude.  We went to the pool several times and I could care less that I'm a chubby lady with no hair.  I'm taking my kid to the pool and you can kiss my tiny hiny.  

We went on hikes and went and visited different lakes and streams that I never took the time to go see since we've been here.  It was good.  I think Abby felt like I was dragging her all over kingdom come.  Just a few years earlier and she would have been all over our adventures.  Now she is a pre-teen and disgruntled by everything.  LOL!

October 2017

My appetite is back in full swing.  In fact it has gone too far.  I gained all the weight I lost during cancer plus some.  I mention this to my Dr. at my October appointment.  He just said, "why do you think that is...hmmm?" In his Latvian accent.  I am concerned because I am not the typical cancer patient who starts to loose weight as a sign of problems.  I am a weight gainer.  Having a ravenous appetite plus being complete devoid of any muscle and energy is not a good combo. 

Plus my kidney's aren't happy.  Still my energy levels are getting better just not to what they were before.  At this point I don't even know if that is possible.  

Dec 2017

At my December appointment I find out that my Kidney's are fine but I have elevated liver levels.  Say that ten times fast!  He said there wasn't anything on the scans from October so in March when we do scans again we will see what is going on with the Liver.  At this point.  We only do scans every 6 months.  So every other appointment. 

March 2018

I finally get CT scans in my abdominal region prior to my next appointment and sure enough I get a call the next day from the nurse.  "You have fatty liver".  Diet and exercise.  Man....if I knew how to be skinny I wouldn't have been a chubby girl my whole life. 

I am still not feeling great.  Can't say at this point that surviving cancer is as amazing as they say. Don't get me wrong.  I'm grateful to be alive, but come on.  It was no new lease on life.  I don't feel any better that I did before so I'm just kind of existing in that regard.  

When I finally go to my appointment I have a new concern besides just being fat.  I am getting my headaches again.  One day during a nasty migraine I was rubbing my temples and noticed a huge goose egg on my temple.  What the heck!  I didn't hit my head.   I mentioned this to the Dr and he felt that since I was concerned we should get a CT scan done on my skull.  That got scheduled and this time Dr. S called the next morning and said that it isn't looking good and that Dr. Wood's office will be calling me.

THIS IS EXACTLY WHAT HAPPENED LAST TIME!  I started freaking out at work.  Not so much because of what it might be, but it was total de javu and that was weirding me out!

So just like last time Dr. Wood's office squeezes me in.  He looks at the scans and says, blah blah blah.    I will fill in the gaps from here down later.

It is now later:  

Funny Dr Woods

At his office they have several computers outside of the exam rooms where they look at scans.

Remember the first scans from before wouldn't pull up so I just got some really crude drawings by Dr. Woods.

This time the beautiful scan of my noggin pulled up.  He started looking at all the parts of the skull, zooming in and out.  "oh...look at these sinuses....this scan is REALLY clear.  Oooo and look at that....this will be on the test!"  At that point I finally realize the guy following us around is a "student".  In my mind I didn't think there would be a test.  I turned around to the student and asked if he wanted to get closer to the screen.  I don't want him missing anything on the test.  Ha Ha!

After a bit, in my mind, I was like can we get to the problem at hand.  Where is the creature in my head that needs to come out.  He finally zooms in on it and sure enough sitting right above my left temple is a nice almond sized growth.  It hasn't eroded the skull which was a good thing.  Don't want it getting into my brain!  So it needs to come out.  So I get scheduled for surgery and just like last time.....they are squeezing me in!  {Shall we count how many times that happens.}

Surgery : 5 hour wait for 30 minute surgery

Nothing really happens at the surgery except for the wait time.  Same day surgery is jam packed on any given day so having an ADD ON just take longer.  I can't complain....they are squeezing me in!

I really was there waiting for 5 hours for a 30 minute surgery.

He ended up taking the whole thing out along with the muscle it was attached to.  Post op he came by to tell me what he did and then he stopped mid-sentence and started laughing.  My mess of curly hair was sticking up out of the bandage like a mushroom cap or a chefs hat.  He really is the funniest guy.

Debbie came down and was there to help with Abby and get her to and from school.  She is also the Amy-sitter for 24 hours post surgery.  Cindy gets to wait with me for the whole duration. She's always a champ!

The mass gets sent out to pathology and I get a call later saying that it has markers for lymphoma. I need to get PET scans to see where else in my system this has gone. 

PET SCANS -   I show up to the Huntsman here in Logan and it is under major renovation.  I get to take more witches brew to light up any cancer cells.  Ground shaking.  45 minutes in the tube.  

I was told that they had ordered scans from the top of my head to my thighs so I would be in the tube for a while.  The scanner gets taken all over the place so it is a mobile unit outside.

Notice the machinery right next to the unit.  The ground was shaking so bad.  The team was assured that the vibrations do not cause problems with the machine.  I had to sit still but the machine doesn't!?  LOL  When they got me in the tube they said that DR. S just ordered a head to toe scan so just kidding I will be in there even longer.  I was in the tube 45 minutes.  Two thirds of the way through I had to get out and go in feet first.  The table isn't long enough to do head to toe in one scan.
Good thing I am not claustrophobic!

Later I get a call from Cindy Nordling my LDS Loveland Coordinator.   They are super bummed that I am coming back.  She was shocked by my cheeriness.  I don't know if most people go into total shock and get all down in the dumps.  That would be total normal right.  Why do I just roll with the punches.  She even said, it is okay for you to be sad.  We were commenting on how positive you were during your treatments before.  Maybe I should break down into hysterics for them.  I don't do sad.  I do mad and happy.  That's just me!