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.