Wednesday, August 31, 2016

My New Hug

Tomorrow is a significant day.  I'm about to enter my first low nadir period (will explain what this is in a second).  That means I need to come up with a new way to hug because the traditional type is now too risky for me.  My immune system is about to go hugging is out. :(  There are some other things I need to watch out for too...but I'll save those for another post. 

I discussed the hugging situation with my posse and we came up with an alternate plan.  I suggested a fist bump but that would include my hands.  NOT GOOD.  My hands are the A#1 part of my body to keep cleanest.  SOOOOO, we came up with another idea:  an elbow bump.  It's just like a fist bump, but elbow to elbow.  I think it'll work!  Just a quick "bump" to connect with everybody who is taking such super fantastic care of me....and we'll just have to hold the "real hugging" for the celebratory remission party that will be early in 2017. :)  

Ok, now back to what Nadir's the best explanation I found....

What is Nadir?

Chemotherapy treatment will usually involve a number of chemotherapy doses (sometimes called cycles). The period of time beginning 7–12 days after you finish each chemotherapy dose—and possibly lasting up to one week—is when you have the fewest white blood cells in your body. Because of this, it will be extra hard for your body to fight off germs during this time.

This period of time is sometimes referred to as nadir, which means “lowest point”. For example, I had chemotherapy on August 25, so I am at the highest risk of picking up an infection between 

September 1 - 6

This period varies slightly depending upon the chemotherapy drug, or combination of drugs, used.

What Can You Do During Your Nadir?
- Be extra careful during this time.
- Take your temperature 2X/day, and call your doctor if you have a temperature of 100.5ºF 
  or higher for more than 1 hour, or a one-time temperature of 101ºF or higher. 
  (Yea, they told me this one at Chemo College.  If my temp rises, I'm to go straight to the ER 
   and do not collect $200.  Let's hope that doesn't happen.)

I've totally got this...


Monday, August 29, 2016

Oh yea...and about adding comments to my posts

Forgot to mention this...

Lots of people are having problems posting comments to this blog...and then others seem to be able to do it just fine.  I don't know why that is.  I Googled it, watched some YouTube videos, and now feel more confused than when I started!  LOL!

Anyway, I DID make a change to how comments will appear if you click the link at the bottom of a post.  Maybe that'll help, maybe it won't.  Figured it was worth a shot.  

If anybody out there has any ideas about this, please let me know.  I want this to be all good!  NO STRESS!  :)

Where is this when we need it?!?!

I've totally got this...


Side Effects are starting to creep in....

It's a given....when you get chemo there are side effects.
Plain and simple.
But are they worth it?

Today I went back to work.  It was not smooth sailing, but it felt great to be surrounded by my peeps again.

The 2 biggest side effects that I'm feeling so far is fatigue and hunger (to the point of nausea).  

The fatigue is weird.  One minute I'll be a-ok.  Then all of a sudden the bottom drops out and I can't stop yawning.  I feel like I need to crawl into a ball on the floor and close my eyes for just 3 minutes!  Sigh.  Eating seems to help...and drinking something other than water.  And it's not that I feel like that the entire comes in I'll just need to seize the moment when the tide/energy level is high!

At Chemo College (CC) we learned that I would need to "graze"....meaning frequent small meals/snacks.  Yup.  Right on.  Many small snacks during the day is doing the trick.  I'll be eating and then all of a sudden I'll be completely full.  I might even have my next bite in my hand, ready to swallow, but when I'm full, I'm full.  Then about 15 minutes later I'll be ravenous.  It's a vicious cycle.  I'm trying not to totally overdose on junk....but Peanut M&M's SUUUUUUUUURE did do the trick this afternoon ;)  And I've become a soup lover too.  Soup helps with the nausea.  I'll figure out some "go to" snacks and then make sure to keep my cube and house well stocked.

So far it's been pretty simple to distract myself from these miserable feelings.  Today I got a super fantastic magnet from an anonymous angel....
It could not be more perfect!  I kept reading it and smiling to myself....especially #1.  And as a bonus there was a Snoopy Sticker on the back!  In this sticker...I am Woodstock, and everybody reading this blog and sending me thoughts is Snoopy.  ❤️❤️❤️

Tonight when I got home, I distracted myself by breathing in close to the flowers that I got from my Laughing Buddy over the weekend.....then breathing out....and feeling stronger knowing I'm so cared for..... 

Yea, the side effects suck.  No doubt about it.  But I've got lots to be thankful the pain sort of forces me to think about all the good in my life.  And let me tell you, there is a LOT of good going on right now!!  There are angels everywhere!  And they know I love tie dye!

I've totally got this...


Sunday, August 28, 2016

The Chemo Shirts are READY!

My energy level hasn't been the greatest, but I did manage to pick up my chemo shirts today from my dude at the flea market.  WOW!  He *EXCEEDED* my expectations!  They have V necks for easy port access.  Some even have hearts on the back (he said he figured out how to do that about half way thru finishing them).  And he even attempted "lime green". ❤️!  

I can't imagine sitting in that chemo chair in anything other than tie dye.  It's my favorite.  It always makes me happy.  It's how I roll! 

When I got out my purse to pay him....he just shook his head and said "get outta here".  ;)  I started crying and he put his arm around me and said "Is your nickname really Bubba?" LOL!  I said "Yep."  Then he said "Get outta here Bubba, you're going to beat this."...and he patted my back as I walked away and put my wallet back in my purse.

I've totally got this...


Friday, August 26, 2016

No One FIGHTS Alone!

My heart just about burst when I saw this picture.  
My sweet little friend Jenna wearing a lime bracelet just for me because
No One FIGHTS Alone!
Does it get any better than that?!  WOW.

I've totally got this...


Thursday, August 25, 2016

Chemo #1 of 6 DONE. End of story.

Today was short and sweet.  One hour from start to finish.  Hooked me up, took some pills, marinated, started the chemo, finished the chemo, done.  BOOM!

I gained 3 pounds from yesterday so am retaining a TON of water.  I think it's because my body is used to being active and yesterday we were so NOT active.  Plus, yes, we gorged on celebratory pizza when we got home...probably not the best choice but I would do it again in a heartbeat!  It was SOOOO comforting.  Anyway, lesson learned.

Bailey, Kelly and I took a 3 mile hike at my favorite park tonight, I feel that good!  It's amazing.  We saw butterflies, turtles, birds, trees, clouds, dirt, am I ever thankful for every single little thing now!  :)  I always was in a way...but now it's even more magnified.  Life is good!

We did have one little glitch today...just to keep us on the edge of chaos.  As Bailey and I were juuuuuuust about to leave the house, my "No One FIGHTS Alone" bag took a kamikaze leap off the kitchen island, the water bottle exploded and drowned my purse!  We both saw it happening and were frozen in was hysterical!  All is fine, I have 1400 spare purses just laying around, so I picked one, repacked the necessities, Bailey refilled the water bottle, and we were on our way again.   GOOD GRIEF!

Here's another picture of the flowers I got from work yesterday.  I absolutely LOVE them!  I put my nose down to them, breathe in, think of all the people pulling for me, and breathe out feeling MUCH stronger.  I totally, absolutely, without a shadow of a doubt, have GOT THIS!

Little secret:  My family has always had this thing about flipping each other the bird.  We decided today that I'm to send a text to my sister every morning and every night to let her know I'm still alive and breathing....the text will be the emoticon for a bird.  I'll save the full story for another time, but this picture just cracks me up because my niece claims that she didn't realize my peace sign was covered by a flower....but in reality when I look at it, she turned my peace sign into a bird!!  LOL!  Priceless!  

I've totally got this...


Day #2 of 2 for Chemo #1 of 6

I am SOOOO ready for today!  WOO HOO!  Today is the final Bendeka.  CanNOT wait!

I woke up with 3 (of course, 'cause 3 is my lucky number!) visuals:

Poor Big Bertha....

Poor Bertha-wannabe's...

There's a new Pac Man in town and she is PISSED!  Non-Hodkin's Lymphoma, you don't stand a chance.....

I've totally got this...


Wednesday, August 24, 2016

How Do I Stay Strong?

My friends and family.
Plain and simple.

The cards, texts, IM's, calls (even though I am not good at talking on the phone), gifts, motivational emails, prayers, vibes, flowers...
The offers to come over, cook food, take care of the dog, whatever I need day or night....

I'm making a cool thing to hang on my wall to hold all of the cards.  It will lift my spirits on days that suck.

Prayer works.  I learned that with my mom and can feel it now.

Yesterday I got the most super fantastic "No One FIGHTS Alone" bag filled with goodies from some friends at work.  Holy Way-To-Give-Me-More-Hope-Than-EVER!  It touched the deepest part of my soul.  I drank out of the water bottle all during treatment and could feel the love that was put into picking it out just for me.  The green socks are SUPER SOFT!  WOW!  And cards, a journal, hand sanitizer, a blanket (because I will be in treatment thru January!), candies for when I get could not have been more thoughtful.  

Thank you.

Thank you from the bottom of my heart.

It convinces me, more than ever, that I've totally got this.  
No joke.  
I do.

The mojo coming my way right now is STAGGERING! 


It can't be ALL serious!!

I've totally got this...


Chemo #1 Completed 4.5 hrs! BOOM!

It could not have gone any better today!  My body totally accepted the chemo!  Big Bertha is NOT happy right now.
Image result for image smiley face

The timeline went something like this:

8:30A Applied lidocaine cream on my port to numb it for treatment.
           Covered it with Saran Wrap so the cream would soak into my skin vs. my t-shirt.
           Put on my super cool orange/yellow/red tie die shirt!
           Sissy picked me up and we headed out.
           PAUSE:  McD's for coffee on the way!  Medium, 1 cream, 1 sugar.  PERFECT!

9:20A My nurse for the day, Chris, brought us back to the infusion room.  
           4' 11 1/2" Chris.  LOVE HER!  
           Had Marty, someone I know from my mom's treatment days, 
           pick out my chair for me.
           She picked one with this on the ceiling:

            Uh.  YEAH!

9:30A Dr. Kritz came back to check my port because it's still a little red from surgery.  He ok'd using the port.  YAY!  Chris told me to blow up my chest like I was proud of something, I did, she poked me, and that was that.  Didn't feel a thing.  MY BARD POWER PORT ROCKED IT!  She tested it and all was working fine!  BOOM!

NOTE:  Dr. Kritz came back a couple times... I think to check to see how I was doing.  He asked the nurses if I was giving them any trouble ;)  I love him!  He puts my mind at ease....

9:45A  Took my vitals then gave me Benadryl for allergic reaction, Tylenol, Zofran for nausea, Decadron steroid to make the Zofran more effective.

9:45A - 10:15A I "marinated"....meaning we let the drug cocktail settle in which would enable me to handle the chemo.  (Skip to the end for a minute to say THIS COCKTAIL WORKED!!!)

10:25A Started the Rituxan.  This is when the rubber hit the road.  My blood pressure was 136/78 when "normal" for me is 107/61 so even though I was trying to remain calm....I was not.  I knew I would make it thru the infusion (my new friend Dan ROCKS at putting my mind at ease), but I really just hoped and prayed that it would go smooth because Rituxan is Bertha's biggest, baddest enemy.  I need Rituxan.  

Skip forward to 2:30P  ROCKED IT!  They gradually built up the volume pumped into me as the hours wore on and I did not have a single reaction.  WOO HOO!  They planned for it to take 6hrs to administer, forewarned us that it might even take up to 8hrs, but it only took FOUR!  YEAH BABY!  And next time, they will give me a "power infusion" and it will only take 1 1/2 hrs.  SIGH!

Before we started the chemo, I asked Chris, "Can you say 'Buh Bye Big Bertha!' as you turn on the Rituxan?  I explained the history to who Bertha is and why she must be named.  Chris smiled a genuine smile, totally got it, and called over the other nurse who was her "double-check" partner and they BOTH said "BYE BERTHA!" as they turned on the drug.  Then every single nurse that came over to help when my IV was beeping would point at the chemo and yell "KILL BERTHA!" before they walked away (I like their enthusiasm with changing it from Bye to Kill!!).  IT WAS SOOOOOOO SUPER FANTASTICALLY AWESOME I JUST CAN'T EVEN DESCRIBE HOW HAPPY MY HEART WAS!!!  ❤️❤️❤️  

At 2:30P we hit a little glitch because my Bendeka (Bendamustine) had expired.  The nurses are SO on top of things, they caught the error and quickly ordered a new, fresh batch.

3:30P  Started administration of the Bendeka, finished by 3:40P.  BOOM!

3:40P - 4:10P Had to hang out for 30 minutes w/Chris just to triple/quadruple check that I was a-ok.  She told us stories, we all laughed, it was AWESOME!

4:15P we were in the car headed for home!  I kept the line in because I figured I'll be going back for more tomorrow...but it's been sort of a pain so I think next time I'll just do two port sticks.  I don't feel it with the lidocaine ointment so it's a no brainer.  Lesson learned.

Tonight it's been low key.  I was instructed not to cook, clean, vacuum, do laundry, or do the Snoopy Happy Dance.  DONE!  I shall sit around, talk to my niece and sister about what a super awesome job they are doing as my caregivers, hang out with the pack, eat pizza and write this post.  OH YEA, and smell the GORGEOUS flowers that arrived at my house just as we had pulled in from chemo from the American Board of Anesthesiology.  My super fantastic job!  WOW!  

Here's some pictures that capture the moments....
 BYE BERTHA!                                               


 YAY!  DONE!                            
          (The socks will be explained in another post :))                                        


My super fantastic caregiver!

 Rollin' rollin' rollin!                

 ROCKIN' IT!                          

I've totally got this...


Tomorrow: Chemo #1 of 6

The countdown to Chemo #1 has begun...


Wow.  I have to wake up and motivate myself for chemo tomorrow.  Unbelievable.  How did I get here?

I remember my mom's first chemo.  I was a nervous wreck!  Once they got her hooked up and thru the first few minutes to make sure she wasn't going to have a reaction, she fell asleep because of all the Benedryl.  I remember seizing the moment and sneaking out because I was about to have a complete meltdown.  Watching that bag sllllllllllllllllllllllllllllllllllllllllllowly drip poison into my mom was more than I could take.  I needed fresh air.  NOW!  I remember opening the door to REX, walking into a side yard, and hyperventilating.  All of a sudden I heard this meek little voice say "Are you ok, Honey?"  I looked up and there was this woman who looked like a walking skeleton.  She was covered in a blanket, but I could still tell that all she consisted of was skin stretched over bone.  I told her that I was with my mom for her first chemo and I felt like I wanted to crawl out of my skin and go find another body/life.  She then held me by both shoulders, looked me straight in the eye, and said "Honey, Cancer is NOT a death sentence anymore.  I am living proof."  She then told me about her extremely rare form of Cancer that they were treating with chemotherapy AND radiation all at the same time.  She had finished with her chemo and was just warming up a little bit outside before starting her radiation.  She had been thru rounds and rounds of treatments and was absolutely sure that she was going to beat it.  

I cried like a baby.  I had found my Angel.  Just when I needed her the most, there she was.  *LIVING PROOF* of what Cancer cannot do. 

She turned around and went back into the hospital after telling me her story. 

I never saw her again...but I always looked for her.  I would love to thank her for easing my mind that day.  From that moment on, I had the courage to face whatever Cancer brought into our lives.  I must have thought of her 1,000 times.  And that fire is still with me, even now.  It burns bright deep in my soul.  I can still remember that lady, fighting for her life with every resource she could muster up.  And now that lady is ME.  I WILL NOT LOSE.  If chemo is what I need to conquer Big Bertha, so be it.  It is what it is.  Bring it.  I can't wait for her to this.... bertha.  

Ok, enough heavy stuff....

I heard that tomorrow it's only supposed to get up into the 80's!  WHAT?!  THE 80's?!  REALLY?!!!!  I LOVE THE 80's!!!  That was my decade!  YEAH BABY!  IT'S MY SIGN!!!  

Here we go...





G I V E    M E   A N   "OOOOOOO"!

What's that spell?!??!  
CHEMO!  BRING IT!!  Image result for emoticon fist


I've totally got this...


Saturday, August 20, 2016

Chemo College

I learned something at Chemo College yesterday that has made my entire YEAR!!!  Here I thought of burning my 2016 calendar once this year is finally over, but now....NO WAY!  I am.....oh my gosh I can hardly type this....I am.....I'm.....sniff!....sniff!....happy...happy.... I am

Somewhere along the way, I GREW AN INCH!  HOLY COW!  This is HUGE!  GARGANTUAN!  THE BIGGEST THING TO HAPPEN TO ME SINCE I GOT MY DRIVER'S LICENCE WHEN I WAS 16!  All these years I thought I was only 5' tall.  I could have told Pat Benetar that we are BOTH 5'1" when I met her a few years ago!  OMGosh...every little thing is going to be alright!

They had to measure me *exactly* and get my exact weight yesterday so when they mix my chemo, it is specific to ME.  I had no idea that this would be SOOO SUPER FANTASTIC!

I wish they had a Chemo College when my mom was diagnosed.  It was AWESOME.  We reviewed all of my drugs and their potential side effects.  We talked about things I need to be aware of, numbers to call, etc.  It was VERY, VERY informative.   It was a bit overwhelming at times...but not as overwhelming if I hadn't already been down this road with my mom.

The biggest issue is going to be my immune system.  It will be non-existent.  I am going to have to be extremely careful not to come into contact with any germs.  I am starting a regimen of antibiotics next week, and will continue to take them 2 months *after* I finish 6 months of chemo.  I'm also allergic to about 10 antibiotics already, so hopefully the ones I start taking on Monday will be compatible with my body.

Besides infection, I also have to watch out for blood clots.  My mom had one of these, so I'll be keeping a close eye out for them.  There is a list of other things too...but as long as I stay aware of how I'm feeling, I'll be fine.  I don't need to be of the mindset, "Oh, I can just take a nap and I'll probably start to feel better later".  Nope.  If something changes, I need to call my Cancer Center.  And for some of the changes that might happen, I'll need to call 911.

I'm going to make myself a new "In Case of Emergency" card.  It's now gotten a LOT more complicated.  But conquerable.  Definitely conquerable and manageable.  

Tomorrow I'm going to put my pills into one of those little daily dispenser things so I don't have to think about what to take each morning and night.  This will just become part of my Sunday "get ready for the week" routine.  I can do that.

The countdown to chemo has started. 
I'm ready.
I'm definitely ready to get this party started!

I've totally got this...


Thursday, August 18, 2016

Care giving is NOT for sissies!

I lied.
It IS for I'm totally honest about it, it is for just one sissy…MY SISSY..….so maybe I should have used a different word, like “faint-hearted”.  
Yea, that works….
Care giving is not for the faint-hearted!
Ok, that sounds better.
Now what was my point?!? .......oh yea!
So, being a care giver is TOUGH.  
I've been there, done that MANY times so I'm speaking from experience.  
You are constantly on pins and needles hoping that you're doing absolutely ALL that you can do to make your loved one comfortable but you never quite feel up to snuff.
It's a bit like riding a roller coaster because you go to doctor appointments or procedures or whatever the moment has presented to you, and you have NO freakin' idea what is about to happen, but you just go with the flow anyway because that's just what caregivers do.  
You hold on for dear life and hope for the best.
It's also VERY frustrating to try to figure out how much do you need to help...or does the person want space...did you ask too many questions...are you remembering everything that needs to be done...are you watching out for all the things the doctors warned you about....what time is the next dose of medicine.....AGH!
It's hard.
Really hard.
And *THEEEEEEEEEENNNNN*, just when you think you've got it all under control....a big ass, gargantuan 8-legged MONSTER of a spider invades your space!
This really happened on Saturday.
I was less than 24 hours out of surgery and we had ourselves a situation.
So, what do you think my posse did to get control of the situation?
      a.  Both ran in different directions, their butts puckering, screaming like little girls.
      b.  One grabbed a shoe that was nearby and squished the beast immediately.
      c.  We called Moose to come take care of the situation.
      d.  We left the house immediately in hopes that he would not be there when we got back.

Ok, before you pick your answer, a little more detail:
1.  I was in severe pain, taking meds exactly on schedule, even cheating a little bit because I could barely move.
2.  The spider, in some people's eyes, was this big:

Have you picked your answer yet?
Ok, one more hint....
Know now?

If you picked "a", you are exactly right.  
Sissy and Monster scattered like a dandelion on a windy day!
*I* had to grab the shoe, bend over, and smash the little beast.
 Luckily, my caregivers made sure I was medicated so I didn't feel a thing!  LOL!
And honestly, the spider was only about as big as your hand....

I will tell you though....other than this little incident, I give my caregivers an A++.  I have not once worried about not remembering something.  I wholeheartedly know that they've got my back.  And I am not going to hold anything back, because I learned with my mom, it doesn't help anybody if you're not completely transparent and honest about absolutely EVERYTHING.

Tomorrow we have Chemo College, where we learn about the next phase of this journey.  
And as I go to sleep tonight, I have ZERO worries.
With all the vibes and prayers and positive thoughts coming my way....

I've totally got this...



Wednesday, August 17, 2016

Follicular Center B-Cell Non-Hodgkin's Lymphoma, Grade 2 - Stage 3A !! :)

My favorite number has *ALWAYS* been 3.  
A 3-legged stool doesn't wobble.
3 most important words you can ever say to someone "I LOVE YOU."
3 flavors of ice cream in a banana split!  
When emoticons came out, 3 is half of a heart!  <3!!  
When I was a pitcher in high school, 3 strikes and the batter was OUT!
I could go on and on and on.... today when we were shown to room 3, I knew every little thing was going to be alright!

Dr. Kritz showed us the Pet Scan (and let me just say, I looked pretty good in 3-D - lol!) and the NHL is primarily Big Bertha.  She is a BEAST and when we looked at the "slice" view from the CT scan, there were some slices where she took up my entire insides, but she has nice round edges, and is definitely conquerable.  She will probably be with me forever because she is so gargantuan, but she will NOT always be active.  Chemo will NOT be her friend.  Her life span just got shortened.

So, now the answer to the question SOOOO many people have been asking about.... TREATMENT:

We're going to start with 6 rounds of Rituxan +  Bendamustine.  Both of these are called "targeted therapy", meaning they know how to find Lymphoma.  They won't mistake other fast growing things in my body, like hair, as Cancer.  They know Lymphoma (...can you just feel Big Bertha's blubbery butt quivering as I type this?!!!).  

I found this article:

Targeted Therapy Combination for Lymphoma Is More Effective Than Standard Chemotherapy

ASCO Annual Meeting
June 3, 2012
A long-term study shows that a combination of bendamustine (Treanda) and rituximab (Rituxan) keeps two uncommon types of non-Hodgkin lymphoma (NHL), indolent (slow-growing) lymphoma and mantle cell lymphoma, from worsening longer than standard chemotherapy. Bendamustine and rituximab are drugs called targeted therapies. Targeted therapy is a treatment that targets the cancer's specific genes, proteins, or the tissue environment that contributes to cancer growth and survival.
This coming Friday we are going to a Chemotherapy training session, then first treatment is next week.  Treatments will be 2 consecutive days, 28 days apart.  My immune system will take a big hit and I will have to take lots of antibiotics, keep my hands super clean, and stay healthy, but it will be an effective treatment plan.  And I won't get side effects like neuropathy, loss of hair, nausea, etc.  The party has officially started!  WOO HOO!  On my way home, I listened to:
  • Staying Alive
  • Somebody's Watching
  • Faith
  • Brave
  • 3 little birds
  • What doesn't kill you makes you stronger!
We had a celebratory lunch at Neomonde's Bakery and Deli:
(yes, there is a certain sister of mine that needs to wait for us to have our eyes OPEN, but that's ok, she captured the moment!)

And here's a picture of a new t-shirt that someone (someone that I have never met but has faced Cancer) gave me!  PERFECT!

Dr. Kritz said this has probably been in my body for quite a while.  That makes me feel a little better because I know the stress of earlier this year took it's toll on my body...but this would have been there anyway.  And there IS a chance that Lymphoma might be hereditary....but proving that is still in the preliminary stage.  I think my Mom and I were just exposed to the same damn environmental trigger.  GRRRRR!!!! 

I felt SOOOOO strong in Dr. Kritz's office today!  WOW!  The support I'm getting is lifting me more than I have words to describe. ❤️ It's impossible for Cancer to win this.  Absolutely impossible.  :)

I've totally got this...