Wednesday, October 25, 2017

Living in a Post Chemo World

Hey guess what?!


You guessed wrong.


Nin doesn't have get chemo this week or any other weeks!!


Celebrating Bubba Dudey's birthday the day after chemo.  Nin looking fabulo per usual!


It's been a surreal few days knowing that Nin doesn't have to get poisons pumped into her body any more. Her hair has started growing back, her immune system has started growing back, and our normal life had stated growing back. Lots of good growth happening.




With all of this exciting news and milestone achieving, people have been asking what is next.  More treatment?  Tests to conclude all disease is eRADicated?  Disneyland trip?  Running for President?  Hopefully all of those things.

Nin will continue her Herceptin infusions every three weeks until sometime next Summer.  These shouldn't be a big deal at all. A simple thirty minute infusion with little to no side effects.  Every ninth week Nin will have an appointment at Big Huntsman in SLC with all the tests and meeting with her nurses, Doctors, and fan club(s). 


Just patiently waiting for Nin's autograph.


Nin will also be starting RADiation on November 16th. You will notice that I capitalize RAD in RADiation. If I make it sound fun, maybe it will be!  These will be daily (each weekday) treatments that will last somewhere around eight weeks or so.  Fortunately we'll be able to do these about ten minutes from our home. That will make it much easier with kids.  We can just turn on the TV then scatter some popcorn and Reese's Pieces on the ground like ET.  They'll never even know we're gone.



I'm joking. We would never do that.



We'd also leave them something to drink...




We honestly don't know much about RADiation besides knowing that it will turn Nin's skin into leather.




Not quite like that but kind of.  You now how your skin is stretchy and pliable?  Apparently radiation causes your skin to lose it stretchyness.  Nin should only need localized RADiation on/in/around/near (choose your adventure and pick the preposition of your choice) her right breast area as well as her right armpit.  So hopefully this won't wreck her skin too bad. We're fairly ignorant at this point because we've been focusing so hard on getting through chemo that we haven't even thought about RADiation.  One thing we were warned of by the Plastic Surgeon is that over time the RADiated tissue can/will tighten. You know how over time breasts stretch and sag?  If you don't, you have my permission to Google it for research purposes.  Well, her left side will follow nature's path but her right side won't. Or it could even be lifted up over time.  So that will be fun.  One day it could put her boobs "out of orbit".  Luckily, breast reconstruction is covered by insurance forever.  





That is what we know about RADiation thus far. Another big question we get is, do the Dr's give Nin a clean bill of health, cancer free medal, or "in remission" sticker?  Unfortunately I don't think she gets any of that.  I still don't fully understand why but these could be some reasons. I've heard the full body scan used to detect remaining cancer cells can cause Leukemia.  Yeah, let's check that you don't have any more cancer by probably giving you a different kind of cancer.




Nin will be monitored every few months with blood tests to make sure everything is functioning smoothly.  Besides that, since we haven't crossed the "end of treatment" bridge, we don't really understand that stuff.  Rest assured that when we learn more about it we'll most definitely probably post about it here.  Maybe. 

Well, I think I've rambled enough for one post. Just want to give a huge shoutout to all of our friends and family that helped us with the kids during the endless appointments and chemo days.  People have helped us in every way imaginable.  Mowing our lawn all summer, brushing our grumpy old man dog and picking up his poo trains (he walks while he poops, setting an intricate series of "poo train" landmines), cooking us fresh meals twice a week for six months, love letters, messages and comments on social media, letters in the mail, stripper-grams (alright, nobody sent a stripper-gram but now you have ideas for the future), helping us clean our house and yard, monetary donations, surprise house decorations, gift cards, hugs, tongue kisses, and endless support. 

We love you all with all our loves and we hope you know it. We aren't great are accepting help sometimes but please know that we've greatly appreciated it. 


If someone out there reading this and isn't telling other people that they are fighting cancer, consider sharing your journey.  You aren't alone and don't need to face this on your own.  Others want to lift you up and support you to courageously fight this battle.  Alone we are just us but together we are unstoppable. 

Wednesday, October 18, 2017

Ringing The Bell!

Wow.  We made it.  Yesterday, October 17 of the year 2017, Nin finished chemo.  Six and a half months ago it seemed like this day would never come.  It felt like an unattainable day. The metaphorical unicorn of days.  But here we are.  Take that unicorns.




This morning there was some unspoken tension in the air.  Nin's chemo treatments are typically every seven days. We requested that this last appointment be moved forward one day because today is Baby Jude's 1st birthday! 


Look at this precious ball of chub!


In order to qualify for chemo your bloodwork has to meet specific parameters.  Not to make it sound like qualifying is an achievement by any means. "Congratulations, you have been granted the blessing of having poisonous medicines pumped into your body, well done!"  These parameters are set to essentially just ensure that you are healthy enough for the chemo to ravage your body.  Since it was only six days since her last appointment, and she's had a minor cold for three weeks (remember the cold two weeks ago that I said went away quickly?  Surprise, it never did), we felt there was a chance that her chemo would have to be pushed back a week. That would have been absolutely crushing for both of us. 

We grabbed some Jamba Juice, dropped the kids off at a friend's house, then went to chemo. Spirits were still high but we were a little gripped and anxious to know if this would actually be the last day of chemo. 




To pass the time we played Harry Potter trivial pursuit. It was a magical distraction (puns intended).  We learned that our Harry Potter nerdery knows few bounds.  In the middle of our heated battle, the nurse came in and told us that chemo was a go!





During every other chemo appointment I have set up my mobile command center and worked during the infusion.  Like this guy. 




Since today was such a special day I took the day off to enjoy this final day of chemo and soak in the experience.  All day Nin was constantly on the brink of crying happy tears.  As we were nearing the end of her final infusion, I went out to the lobby and grabbed our friend and amazing photographer Ciara to document the joyful end of this journey.  If you've ever seen a beautiful picture of our family, you can thank Ciara for digitally sexifying us with her crazy good editing abilities.  Just like this:





Or maybe like this:




I surprised Nin by bringing Ciara back and told her that I invited her to document Nin ringing the bell.  Little did she know that I had arranged for a big chunk of our families to be there to support her and share the momentous occasion of her ringing the bell.  She had absolutely no idea and I can confidently say it gave her and everybody else butterflies inside of their butterflies. I know mine were extra buttery.






After lots of hugs, lots of tears, and lots of tambourine shaking by Penny, it was time to Ring the Bell.  At the Farmington location of Huntsman Cancer Institude, you get to ring the bell when you finish chemo.  The main location in Salt Lake City has a gong.  One thing is absolutely certain, for chemo to officially be completed, you need to make some kind of loud noise with metal.  I'm pretty sure that if you don't, you have to restart chemo all the way over.  So it's a pretty big deal. 





After the auditory tribute to the chemo powers that be, we two stepped it out of there to never return!  

...But in reality we'll be back every three weeks until next Summer to complete her Herceptin doses. At least the future visits will be much shorter, easier, with little to no side effects, and we get free grape juice. 


The army!  Apparently Papa (Dave), (Gigi) Julie, and Mumsie (Kristal) were so overwhelmed with joy that they fell asleep.  There is probably a less blinky picture out there but it's too late now.


We have absolutely loved the nurses and Doctors at the Huntsman Cancer Institute.  We don't recommend anybody get cancer but if you do, go to Huntsman.  They are the best of the best.  Nin's nurses all signed a card with this goosebump-giving poem.



A mighty wind blew night and day.
It stole the Oak trees leaves away,
Then snapped its boughs and pulled its bark
Until the Oak was tired and stark.

But still the Oak tree held its ground
While other trees fell all around.
The weary wind gave up and spoke,
"How can you still be standing Oak?"

The Oak tree said, "I know that you
Can break each branch of mine in two,
Carry every leaf away,
Shake my limbs and make me sway."

"But I have roots stretched in the earthm
Growing stronger since my birth.
You'll never touch them for you see,
They are the deepest part of me."

"Until today I wasn't sure
Of just how much I could endure.
But now I've found with thanks to you....
I'm stronger than I ever knew."

-Johnny Ray Ryder Jr.

Wednesday, October 11, 2017

Six. More. Days.

We are counting down the days until Nin is done with chemo.  As of today, Wednesday, there are only six more days!




The chemo treatments are definitely compounding. Before Nin stated this cycle we heard a bunch of different scenarios of what might happen. Everybody reacts a little differently and Nin has definitely fallen under the category "Compounding fatigue and dude effects." <-- I'm typing this on my phone and it auto corrected side effects to dude effects so I'm leaving it.  I'm not even mad about it.  I'm kind of proud that my phone is starting to understand what I truly want to type.






Nin has weathered the side effects surprisingly well.  Even as they get more intense, she's MVPing her way through.

The most obvious, recent side effect, besides hair loss (duh), is Nin's finger nails slowly dying. Over the past few weeks they've turned a little red and have become sensitive. She regularly catches her nails on things which causes them to lift up. [Gross chill shivers] <-- not unlike pee shivers, btw.  She has a hard time with simple tasks like buttoning buttons, opening cans (of Whoop Ass), undoing car seat buckles, or plucking at a harp. I don't think she's ever plucked at a harp but the thought of her playing one with the current state of her nails just made the hair on the back of my neck stand up.










Nin's hair has started to grow back. It's really light (in color and thickness). Here is a crappy quality picture showing what her hair is looking like.





Her head feels like a minkey blanket. I'm not exactly sure what a minkey is but I like to think that it is a monkey with suuuuper soft fur that just gets brushed and conditioned all day long in the salon of nature.  Her hair doesn't feel like it's from a full grown minkey though. I'd say it would be from a brand new super soft baby minkey.




Nin's fatigue has been stepping it's game up over the past couple treatments. She's starting to feel more tired for those first couple days after chemo. Especially the second day.  Even then, she handles it like a trooper.  She rarely complains and even more rarely asks for help.  If the situation were reversed and I were going through chemo, I'd probably be face down in bed for 5 days following treatment, peek outside to see make sure the world was still spinning on the 6th day, then go back to chemo on the 7th day. Nin is seriously so tough.

She just completed her 15th of 16 chemo treatments today. Plus it's her birthday tomorrow! Make sure you wish her this cancer fighting badass the Happiest of Birthdays!  Just do it more gently than this girl...




Thursday, September 28, 2017

Snot Rockets

While I'm the Captain of this blog, I should rename it to "Long Time No See", "Sorry for the Delay", or "I Promise I'll Write More."  I'm the worst and writing consistently, I know.  I'll try to do better.  It's not you, it's me.

Nin just completed chemo treatment #9 of 12!  Three weeks left and she is D.O.N.E!  We're getting pretty excited about it.  As long as there aren't any setbacks (fingers crossed) Nin's last chemo will be the day before Jude's first birthday, October 17th!  It'll make for quite the birthday/post-chemo celebration.  T-Swift will probably even show up.  NBD.




During this whole process we've tried to have things to look forward to.  Nin is turning 30 AND beating cancer, it's a big year.  To celebrate these big accomplishments, we are taking a trip to Paris and Switzerland in November!  We, Nin especially, have always wanted to go to Paris.  We're going to spend five days in Paris then head over to Lauterbrunnen, Switzerland to spend a few days with our friends, the Brinkerhoff's, who moved there for two full months.  Because they're awesome.  If these pictures don't make you want to go to Switzerland, we can't be friends anymore.






I haven't felt the urge to post a lot of updates lately because not much is happening.  Nin is just crushing it, per usual.  Her treatments have been uneventful and have gone smoothly.  I've missed the last two treatments.  One because I was traveling for work and the other because we couldn't find babysitters for our snot-nosed kids.

Over the past week or so our little family has been sick.  Penny got it first, then promptly gave it to everybody else, including Nin.  Amazingly, this is the first time Nin has been sick since she started chemo.  We didn't know what to expect.  We'd heard the horror stories about common colds turning into ER visits but luckily it didn't hit her very hard.  It was a very minor cold and even with a compromised immune system, she got over it quickly.  I would say the worst part about it was that her nose ran a lot.  Normally that's not a big deal but when you don't have nose hair, the snot has no resistance and escapes with great force.  Just imagine that these two Russian dudes are snot and the slide is Nin's nasal passage.  It's a shockingly accurate depiction of her snot life these past few days:




Overall, Nin is still doing great.  It seems like the chemo treatments are compounding slightly and taking just a little more toll on her each time.  She gets a little more tired but nothing too crazy.  This cycle is still very mild compared to the first four doses of the DDAC.  We feel very blessed that she's done this well.  We have no doubt that the countless prayers her positive attitude has made a huge difference in how well she is doing.  Stay positive people and keep praying.  Everyday.




I know this blog is about Nin but I'm going to digress for a good cause.

For the past six months, there has been an ever present "heaviness" in our lives.  These past few weeks have been extra heavy.  Nin is doing great but one of my best friends, Jesse Johnson, recently found out he has an advanced form of testicular cancer.




A few weeks ago he had such severe back pain that he checked himself into the ER only to find that tumors on his lungs, pancreas, and other areas in his body were causing the pain.  Turns out it is an agressive form of testicular cancer called Testicular Choriocarcinoma.  They started a light form of chemotherapy almost immediately.  After a few days of chemo he went home for the weekend.  Due to the tumors in his lungs and the toll his body had taken from the chemo, he had to be admitted to the ICU where he was placed in a medically induced coma.  I know, heavy.

He has been steadily improving and isn't completely sedated anymore.  He's doing well enough that they removed his ECMO tubes (life support oxygenation tubes).  It's an uphill battle but Jesse's a fighter and will pull through.  Through the past few months with Nin's diagnosis and treatment, we know now more than ever that the power of prayer is real.  We're asking that everybody add Jesse and his family to their prayers.




To end this post on a lighter note, here is one of my favorite pre-Youtube videos that always makes me laugh.  Words that Jesse and I lived by.  You know, something to take they breff away.




You got this Jesse.

Wednesday, September 6, 2017

Feel it on the First

As a quick update, Nin is doing very well.  She gets a little wrecked a couple days after chemo but overall she is handling everything like a champ.  Today her nurses told her that they concluded "she was the most beautiful bald person they had every seen."  Quite the compliment considering they see bald people all day every day.  She just completed her 6th of 12 chemo doses.  HALF WAY DONE with this final chemo round!


Thanks for the balloons and gift Tori!


The rest of this post is going to be dedicated to breast exams.  I know I did one back in April but I felt it appropriate to post another.  We've been blown away by the number of people close to us that have recently done breast self-exams, only to find tumors.  Most of these lumps weren't cancerous but a few were.  A few too many.

There is a great movement promoting monthly self breast exams called "Feel it on the first."  It simply suggests that you do a self breast exam on the 1st of every month.  I know what you're thinking.  "Well Derrik you done messed up because it's not even the 1st, it's the 7th."  Lucky for us all, your boobs can't tell time.

Take this opportunity to get to know your boobs.  You can even let your significant other pitch in.  As they say "Many hands make light work."  If you aren't comfortable doing a breast self-exam call me, I'll lend you my hands for the greater good.  




A bold strategy, I know.  But in all seriousness I'm no breast exam expert.  For that reason I have copied and pasted some of the key tips from Nalie Agustin's Website below.  Take the time to read them over.

If you're wondering where to start, I'd suggest taking some pointers from my feline friend below.  He looks like he knows the proper techniques.


And yes, I had to Google "cats giving breast exams" to find this gif.  


Here are the tips from Nalie's website.  Happy groping:

FEEL IT ON THE FIRST!
Here’s the secret to examining your breast:
It’s not about doing it right, it’s about doing it REGULARLY!
So on the first day of every month, I want you to feel yourself! Yeah girl. Both literally, and figuratively.
Get to know your breasts and remember what they normally look and feel like! Look out for any changes.
Here’s what to look out for:
Breast Changes:
  • Size or shape
  • Deformation
  • Lumps in the breast, upper chest or armpits
  • Swelling of the breast or arm
Skin Changes:
  • Redness
  • Orange peel skin
  • Thickening
  • Discoloration
  • Dimpling, pitting or puckering
  • Localized feeling of warmth
  • Ulceration or wound
  • Visible vein
  • Skin shrinkage
Nipple Changes:
  • Appearance
  • Spontaneous Discharge
  • Inversion
  • Deviation
  • Eczema or ulceration of the nipple
If you find anything, visit your doctor immediately! And from experience, if you find a lump demand an ultrasound! If you’re under 40, remember… an ultrasound, not a mammogram! A clinical examination just won’t suffice!
Keep in mind, that not all changes are breast cancer! In fact, it’s quite normal for our breast to change due to the menstrual cycle, pregnancy, lactation or aging. But it’s better to be safe than sorry!

Tuesday, August 29, 2017

Sorry For The Delay

It's been a while since I posted an update about Nin's badassery.  Sorry not sorry.  We've been too busy partying hard in between chemo treatments to type words.  You're probably thinking, "How hard can you party after chemo?"  I'll let our camping/dance party in the dirt video answer that question for you.






Or as I'd say, along with everybody else, in a business email, "Sorry for the delay."




Nin has now completed 4 of her 12 rounds of chemo.  I actually don't know if the term "rounds" is correct.  As far as I know it could be called rounds, doses, acid trips, cycles, infusions, walk abouts, or gentrifications.  I don't think anybody really knows the correct term, and they probably never will. #Mysteries.

Overall, Nin has been doing pretty great.  She got a little greedy after this last dose, which was on a Wednesday, and thought she could attend a work retreat meeting/kayaking on the lake with co-workers day.  Not the best decision. She was worked the next day.




Besides exhaustion, exactly like the anti-drug commercial girl above, Nin has weathered the potential side effects very well.  We're still wrapping her wrists and ankles in ice packs during her chemo infusions of the drug "Taxol" or officially "Paclitaxel" for you medical nerds out there. 




This restricts blood flow, and thereby chemo drugs flowing through her veins, to her extremities. This will hopefully prevent neuropathy, which is the loss of feeling in the fingers and toes.




Obviously, she makes even this look glamorous. I'm afraid that people see her on social media and will think "Oh man, cancer treatment looks so fabulous, I want to try it."  We know it's tempting but don't do it.  Not worth it.

One small thing that has been bugging Nin is the tissue on her gums becoming sensitive and basically falling off.  It's not like she sheds her gum skin like a snake though.  Unless that's what you're imagining.  If you are, keep imagining that.  You do you.  Don't let anybody tell you who to be.


When Nin's gums first started to bother her, she thought it might just be a popcorn kernel stuck under her gum line.  Or "subgingivally" for you dental nerds.  Man, lots of nerds in the house tonight.  Sorry cool kids.

We all went to see "Nana", my mom who is a "gentle" hygienist (according to a little neighbor boy years ago), at work.  I'm not great with grammar or "Englishing" but I just used parentheses inside of a set of commas indicating a nonessential phrase.  Like this: "(___)".  I'm no Leo but I'm pretty sure that is the literary version of Inception.




Guys, I'm sorry. It's taken me four paragraphs to explain that Nin went to the Dentist. I'm out of control.





Make that five paragraphs. Nana didn't find any popcorn in Nin's gums but she gently scraped off some plaque while being very careful to not make Nin's gums bleed.

A lot of people don't understand why I'm so uptight about Nin doing something that could make her bleed, like cutting herself, falling down, or getting shot, as a few examples.  It's a condition called hemophilia...probably, and it is a result of the chemo drugs making some patient's bodies unable to clot blood.  Luckily that hasn't happened for Nin.  In some cases even small things could lead to Emergency Room visits like bleeding gums from brushing your teeth, nose bleeds, and even hang-nails that just can't stop, wont't stop, bleeding.




Another concern is anemia. Chemotherapy attacks and kills cancer cells but it also attacks red blood cells.  This lack of blood cells can cause fatigue and feeling cooler than normal. Nin couldn't get warm the other night and it wasn't even cold.  She bundled up like ET and I piled blankets on her until she warmed up.



Just another fun side effect.

Overall, Nin is killing it. She goes back in for another "gentrification" on Wednesday.  Keep the prayers coming that she continues to do well and doesn't feel tempted to be a bone head and go kayaking the day after.

On a final note of culinary inspiration, and in preparation for the new IT movie that we will absolutely never watch, this makes Nin laugh any time she sees it.  Because it's her.





Monday, August 7, 2017

Making Cancer Glamorous Since 2017

Look at this hot mama making cancer look glamorous!  All the cool kids are doing it.



It's been a couple weeks since I wrote an update about Nin, so learn from this guy and buckle up!




The last update post was right after Nin finished her final dose of her first heavy round of chemo.  At that point she was feeling pretty well.  She drank a ton of water before, during, and after chemo and was fortunate to forego most of the side effects that had laid her out the round before.  Those first few days after chemo were great.  She came home and slept 20 straight hours, you know, as one does.




Then she woke up feeling way better than she had after any of the previous three rounds.  It was a HUGE relief, especially compared to the round before.  I was absolutely dreading her waking up and feeling terrible but she snapped right up and got right back to it.  Like the boss she is.

A few days after her infusion a few side effects caught up to her.  Throughout the four doses there was a high chance of Nin getting bone pain from the Neulasta.  She lucked out for the most part on the first three rounds but unfortunately it caught up to her on the fourth and final dose of the first round.  She described it more as feeling as if the majority of her body was severely bruised.  This lasted a couple days and beat her down a bit but she handled like a champ, like she does.

The second weekend after that fourth dose we were able to spend some time at one of her favorite places on Earth, Bear Lake.  The weekend was filled with a lot of lake time, pool time, nap time, and game time.  Just what the doctor ordered.






Bubba dude was clearly having a good time at the pool with mommy!




We mostly stayed at the resort but we took a quick detour to Minnetonka Cave.





After Bear Lake (two weekends ago), we were dreading the next week. That's when Nin started her second cycle of chemo. We've learned that through this experience, that hardest thing to deal with is the unknown. Not knowing how Nin's body would react was a bit stressful. She received her first infusion last Thursday.  I had to go to Lake Tahoe for a work event from Tuesday to Thursday.  On Thursday morning during our final meeting, as Nin was on chemo, I was pretty anxious. I kept checking my phone, sat trying to pay attention but sat there fidgeting like I was waiting for a call from my favorite drug dealer to deliver some goods.  




One of the common side effects with her new cycle of chemo is an allergic reaction. They loaded her up with Benadryl and monitored her for rashes, hives, etc.  Nin's mom Julie kept me up to date and luckily she didn't suffer any allergic reactions. [Wipes brow]

The next, and more serious, side effect we are concerned about is neuropathy.  Neuropathy is essentially numbness of the extremities or loss of feeling in your fingers, toes, feet, and hands. You know when your hands get so cold that you can't grab or hold on to stuff? It's like that but can be permanent. For-eh-ver.




To combat the neuropathy we uses ice packs around her wrists and ankles which constricts her veins and restricts blood flow to her hands and feet. We used two ice machines that recirculate cold water around her feet, ice packs on her hands, and ice wraps around her wrists. It was a good look.

 


I'm happy to report that since her chemo infusion on Thursday, Nin is doing GREAT!  She is a little tired but didn't suffer the nausea, extreme exhaustion, blurry vision, or any of the other majorly crappy side effects.  If she can keep this up for the next 11 weeks, we'll all be happy campers.  It's been good to have her back with (a little) more energy.  Penny was so happy to have her mommy feeling great that she offered her a free hair styling. "But mommy doesn't have any hair.  I'll make it pretty though."




Everywhere we go, people come up to Nicole and tell her how brave she is.  Or we'll meet people in public who will recognize her from social media or the blog and introduce themselves and tell her how inspiring and brave she is.  Nin is always flattered by this but at the same time she just thinks that she isn't doing anything special.  From her point of view she just sees the day to day grind but what she doesn't see, that we all see, is that she is a beacon of inspiration, hope, and badassery.  We all see it from the outside but the amazing thing is that she doesn't realize how amazing she is because she isn't doing anything that isn't normal for her.  She's not putting on a show to be an inspiration, she just being Nin, which to me is even more inspirational.  She's not doing it to prove a point, she's not doing it for a social media appearance, she's not doing it to impress other people, she's doing it because she's a champ.  

Nin likes to end posts with inspirational quotes, so I'll leave one:

Be like Nin.