Monday, May 22, 2017

Fanny Packs



If you saw Nicole after her surgery, your probably noticed her bitchin' fanny packs. Arguably cancer's hottest summer fashion trend of 2017. 

(If you are from a country where the term "fanny" has an impolite meaning, pretend I mean it that way. I bet it will make this post much more fun for you.)

Not only did her fanny packs look incredibly good when paparazzi would catch us in public, they also served her great utility. Along with her phone, fruit stripe gum, slap bracelets, and pencil erasers, she used her fanny packs to store her drains. 


Drains are racquetball sized bulbs at the end of surgical tubing designed to pull out any excess liquid from her recently excavated chest cavity.  Why drains? I'm glad you asked. Let's take a journey. A gross journey.

Breasts need support within the chest, it's science. Google "Boobs" if you don't believe me.  In lieu of Nin's own breast tissue that she grew all by herself, she now has a layer of "Alloderm" between her chest expanders (temporary fake boobs) and her chest skin. Alloderm is essentially cadaver tissue that has been repurposed to replace removed tissue.  From what I understand (I'm not even a little bit qualified to explain medical things so please feel free to quote me to any major publications) Alloderm serves two purposes: First, it gives the patient a flesh/tissue later between their skin and implants. Second, it is anchored to her rib cage in a way to provide support for future artificial breast tissue. I like to think of the Alloderm as a hammock of tissue for her temporary and future permanent foobs.


It may serve other purposes but I didn't learn about them at Not A Dr University.  Back to the purpose of the drains. The Alloderm tissue will connect to Nicole's chest skin. It starts with her skin sending tiny blood vessels to the tissue. Think space station docking.


If excess liquid gets in between the Alloderm and her skin, it could compromise the tissue and connection.  If the blood vessels do their job and everything goes well, her body accepts the tissue, supplies blood to it, invites it to meet her family, and the rest, as they say, is history.  That's why if you saw Nin these past couple weeks I warned you not to get near her chest and to refrain from boob touches. 


The slightest bump to her chest could break the connections of those tiny blood vessel bridges. It wasn't at all stressful having two small wiggly children around Nicole most of the time. Luckily, everything is connecting and working well so Nin was able to get her drains removed last week! I recorded it for your viewing pleasure. In this clip, starring Nicole and Dr Crofts, you'll see the drains being removed. This is from her viewpoint. Well technically it was from my viewpoint. I was standing at her head looking towards her feet for reference. That bump under her skin is the port that would be used during chemo. Think of it as an auxiliary cable port directly to her veins, we'll talk more about this in next week's lesson.  This drain is being pulled from her left breast.  

Warning: there isn't any blood but the video might gross some people out. Here it goes:


A few minutes after the drains were pulled out, blood started to fill the space where the drains were. The Dr said, "I've never seen that before," which is what we look forward to hearing after medical procedures. It wasn't a big deal but I wish someone would have taken a picture of the Dr, his assistant, and myself all putting pressure on different parts of Nin's breast to make sure the blood didn't interfere with the Alloderm. It was very romantic. 

For a timeline update, we are doing another round of IVF (to harvest eggs for future Schweppe's) which will be done on May 27th-ish.  Chemo will start on June 1st.  More details to come soon.

Monday, May 15, 2017

Public Service Announcement

I feel like I shouldn't even need to be writing this but I do.

Please for the love of everything that is holy, when talking to Nicole or myself do not tell us a story about a relative, friend, or acquaintance that had breast cancer or another type of cancer and died. Know your audience! Read the room!


Don't let this request detract from the tragedy of losing a loved one, regardless of how long ago it's been. We are so sorry for your loss. Just understand that at this stage in our lives, mid-cancer battle, we need stories of survivors and successful recoveries. Positivity for the win!

Rant over. Love you guys.

Sunday, May 14, 2017

Hair and Makeup and Thoughts by Steph


If anyone knows Steph they know what an amazing human being she is. I don't think she has a mean bone in her body. I met Steph and Kollin about 6 years ago. In that time we have lived together (they rented out our basement while trying to find a home), been our next door neighbors, traveled near and far together from Costa Rica to Italy and so many places in between, we've laughed, cried, had what we thought then was a near death experience, she has seen me on my highest highs and lowest lows. She is one of those women that make you want to be better. I cherish our friendship more then she will ever know.

She recently wrote about me on her blog and she was able to put into words what I try to express in writing but just can't quite get the words right. I thought it might be interesting for others to read her perspective on this whole cancer thing. I decided to just copy her post down so you can read it here or you can go to her blog here and read it. 




From Steph:


::::::::

One of my best friends Nicole has cancer.  It's been a huge part of my life lately, so I wanted to write about it.  She has her own blog if you want to follow her journey.

When you hear that someone has cancer, it’s hard not to think “Yeah, everyone has cancer these days.  My neighbor and my coworker and my aunt and my brother and my sister's dog all had cancer once.”  Up until now, I’ve never had someone close to me have cancer.  My grandma had breast cancer, but she was in her 80’s, so she was already pretty sick and immobile.   All I remember from that experience was that every time I saw her she’d say “do you want to see where my boob used to be?”  and then pull down her shirt and show me before I could say “no that’s ok grandma, thanks anyway.”

One of my best friends has cancer.  I hate writing those words “my friend has cancer”, not because it’s hard to write, but because something so personal and painful can’t possibly be summed up in a sentence so small and generic.  It's impossible to accurately portray those emotions.  In the words of Shakespeare:   “I cannot heave my heart into my mouth.” 

I’m not a family member of Nicole’s, and I’ve only known her for about 6 years which is pretty short compared to everyone else, so I’m really not qualified to write about this at all.    But friends are the family you choose, and writing is my outlet, so when one of my chosen family members has cancer, I can’t help but write about it.   

The complexity of emotions that come with cancer (or I’m sure any debilitating illness) are so deep that it’s hard to even try to put it into words.  When I used to hear about other people who had cancer, my heart would genuinely ache for them, but I’m just realizing now that I had no idea the extent of what they were going through.  It’s not just the life threatening physical illness that’s difficult (as if that weren’t enough), it’s the emotional and mental stress, suffering and sadness that come with it.  In some ways I would imagine the emotional and mental pain would be more trying than the physical pain.  Fear, guilt, anger, confusion, mourning, these are just a few of the things I know Nicole has already been going through. And on top of that, knowing that so many other people are sad and hurting for you would somehow make you feel worse in and of itself.  The debilitating illness you now have is not only consuming your own entire life, but the lives of everyone around you.  Even if you know that those people love you and want to be there for you, it has to be hard to accept, especially for someone as aware of those around her as Nicole.
Through this whole thing so far, Nicole has been so composed, so put together, and so positive.  It wasn’t until the last couple of days that it was almost like the weight of everything was crashing down on her.   She told me through tears how she saw herself naked in the mirror for the first time without her bandages, and that she wasn’t prepared for how she’d feel.  She told me through tears how guilty she feels for even being sad at all, because everyone has done so much for her and been so generous.  She told me through tears how she can’t help but think about how perfect her life was before any of this happened, but at the same time how she feels so bad for even thinking that, because things could be a lot worse.  And then there’s her kids.  Don’t even get me started on Penny and Jude.  If anyone knows Nicole, they know she absolutely loves being a mom.  And they know that both of her kids are extremely adorable and pretty easy.  She’ll be the first to tell you she has amazing kids.  When my twins were born early at 1.7 and 3.6 pounds, the hardest part was wanting to hold them and care for them, but only being able to ache for them while I stared at them through the incubators.  Even though I was grateful they were being taken care of, and that they were doing so well, leaving them every day at the hospital was nothing short of heart wrenching.  Hearing Nicole talk about Penny and Jude right now reminds me of exactly how I felt at that time in my life.  Here she is with two beautiful kids that she couldn’t love more, but she can’t hold them, or take care of them or make memories with them.  Every day she leaves them with a family member or friend because she’s literally not physically able to be with them right now.  She’s knows they are having a great time with their cousins and friends and family, and she’s so grateful for all the help people are offering up so freely, but that doesn’t change how painful it is to think about how much she doesn’t even want to be in this situation, and to wish she could be the one making those memories with them.



Nicole and Derrik definitely know how to count their blessings.  She’ll be the first to tell you there are worse things happening in the world right now than her breast cancer.  She has so much gratitude, but even still, the weight of this experience is real, and it’s heavy.  This experience has reminded me that life can be painful sometimes.  Really, really painful. And the worst part is knowing that a lot of people have to suffer through their trials alone.  When we hear a simple sentence like “my friend has cancer” or “I have depression” or “my loved one passed away” or “I’m getting a divorce” or any other trial that someone might be going through, we can't forget the amount of emotion and pain behind those words.  All we have is each other. Anytime you feel like someone might need your help, or words of encouragement and love, and I can guarantee you they do.

The amount of love and support Nicole and Derrik have been shown by people from all over the world is overwhelming.  It's not even me that's going through it, and I still get emotional when I think about it.  It makes me wish I would have been more open to sharing my feelings and experiences while my girls were in the NICU.  The love that even complete strangers are willing to give to those who are going through a difficult trial is humbling, and reminds me that the world is a beautiful place.  
Nicole, I love you.  We all love you. I know that you hate that we are all making such a fuss over you, and that you think you aren’t worth it, but you are.  
You’ve got this!!

Here is Nicole's GoFundMe if you want to donate.  




::::::::

I told you Steph was an incredible writer. I hope you enjoyed reading that as much as I did. 

Friday, May 12, 2017

Habdahumbadahubuda SOLD !

That was my best auctioneer voice via type.  I hope it worked because it did in my mind and it was magical.



Our friends put together an Instagram auction with all of the proceeds going towards Nicole's medical bills.  We are absolutely blown away my how many people have donated such great products and are bidding.  If you are interested in bidding or donating something, you can find the page on Instagram @warriornicoleauction. <-- Click the link.  Auction is currently live and ends at 8pm MST today.


We have been overwhelmed (in a good way) by the generosity from family to complete strangers.  This is a tough journey, especially for Nicole, and minimizing the stress of the cost of cancer will be immeasurable for both of us.  We can't say it enough but THANK YOU.  I wish I could wrap my arms around each of you and thank you personally.  Maybe a kiss on the lips too if you play your cards right.

It's been hard for both of us to be on the receiving end of so much charity and generosity.  We can't help but feeling guilty about it all.  This is our trial and part of us feels like it's our cross to bear and ours alone.  In preparation for all of this, we were very blessed last year with the ability to allocate some of our money specifically to help those less fortunate.  The feeling we got from giving was nothing short of spiritual and felt so good that it was almost addictive and made us want to give as much as possible.  We didn't realize how much harder it would be to be on the receiving end.  Knowing how great it feels to give makes it a little easier to be on the receiving end.  As we were hesitant to receive help from someone this month, they said "Don't you dare deny me these blessings!"  So I guess what I'm trying to say to everybody that has and will serve us is you're welcome.  Enjoy the blessings!

I kid.  In all seriousness, thank you all from the deepest depths of our hearts.  We promise to spend the rest of our lives paying it forward and giving back as much as we can do those in need.  Please know that we promise to be worthy stewards of your hard earned money.

Nicole likes to end her posts with quotes so I'm going to follow suit.  I heard this the other day about being diagnosed with cancer and it feels ridiculously accurate:

"You've just been hit by a train.  And it's a long train."




Wednesday, May 10, 2017

Today was hard



Sorry you'll have to take a break from the amazing writer that is my husband and have to listen to me for a post. I'm not near as clever or funny but I can be a lot more depressing, so that's fun. 

Today has been a hard day. My medication is giving me nightmares so I was up, no joke, every 20 minutes last night. I woke up scared and crying out every time. It was exhausting and frustrating. I was so fed up in the morning I decided to get off my pain killers cold turkey, even though my mom warned me against this. I was so tired I totally forgot that she told me to wean off of them. As the day went on I could not shake this sadness I had. It was like a dark cloud following me around ready to storm at any time. I chalked it up to no sleep. I finally layed down to take a nap and woke up with no relief. I moved to my room hoping that would help being in a dark, quiet place. Again nothing. I tried a third time. When I woke up on the verge of tears I knew there was something wrong. I was trying to figure out why I was feeling this way and what had changed. All these thing I said I was okay with, was I really okay or just burying my emotions? When I really thought about it I was okay with it. I had come to terms with these things, so why was I so sad? I finally told Deek how I was feeling. He told me I was having a reaction to the medication. Even knowing that my hormones were just out of balance did nothing to lighten my mood. I still felt crappy. 

I was at my friend Steph's crying to her when the rest of my friends showed up. They had a pear tree to plant in my yard next to my lovely peach tree. The tree was full of quotes and money from them and their families. The rest of the night was spent in each other's company. It could not have been a better distraction from my pity party I was throwing myself. 

The tree is part of the Anything for a Friend.

I hate to write such a negative post, but maybe it might help someone else to know they aren't alone. 

Tuesday, May 9, 2017

Summer of Bubbles

[Closes eyes] There's no place like home, there's no place like home.


Above is an accurate depiction of how we've felt this week.

We've had a constant wave of friends and family visiting this weekend. It's been so good to see everyone. I have a feeling we'll remember this as the "Summer of Bubbles"... [lowercase subtitle] "and that one time Nicole had cancer."



We came home from the hospital last Friday to a lovely surprise waiting for Nicole. [Queue song] Millions of peaches, peaches for Nin, millions of peaches, peaches for din.

Her family surprised her with a peach tree, which she's wanted for years. Her 8-year old nephew Boen had the idea to get her the tree for a service project and the whole Call Family rallied together to get it before she came home. That is way more thoughtful that I ever was at 8 years old. I was too concerned with Space Jam and rollerblading to be thinking about other people. Just a real class act. Not me. Boen.


Speaking of farming, we farmed out the kids to family for the better part of the past week. It was hard to be away from the them but it made us really happy when each time we picked them up and Penny would see us she'd immediately growl, "NNNOOOOO!" It's such a relief to know she is having so much fun that she forgets we exist. When she's 14 that will hurt but this week it's been quite comforting.

Penny is typically a heavy sleeper. For the first few days she was with her cousins and would wake up early (8-9am being early for her) because she knew there were toys and cousins to be played with. All those strenuous days of waking up at such an ungodly hour (for her) caught up to her and she crashed haaaard on Monday. Here is the evidence. Keep in mind this isn't a nap. This is her still asleep from 9:30pm the night before. Check the clock...


That's not a typo. Penny slept in until 12:45PM. That is basically like four hours before old people go to sleep. She then napped from 3-6:30 then went to bed at 9:30. It's tough being Penny.

Congratulations, you made it past my nonsensical ramblings. As a reward I will share the GREAT news we just found out today. The pathology results are back from surgery and the cancer DID NOT SPREAD past the single lymph node they discovered during surgery! This means she remains Stage 2(B).  We're soooo relieved.  Wasn't that a nice surprise? It's like getting two egg yokes in one egg or the fruit at the bottom of your yogurt (if you're a rebel and don't stir it up before you eat it).

Nicole will have a few weeks of recovery, then chemo.  We'll know more details once we meet with the Oncologist. Probably towards the first of June. We'll be expecting all of you to buzz your heads. Mainly the women. 

Thursday, May 4, 2017

The Upside Down

Derrik here again.

Have you watched Stranger Things on Netflix?  If you haven't, put your damn phone down and go binge watch the entire series right this minute.  If you have seen it, congratulations on being one of the cool kids.  Please feel free to continue reading the blog.  And treat yourself to a decadent dinner, compliments of the Schweppe's.  You still have to pay for it though.

I was hoping to add a couple blog updates yesterday but it turned into a pretty tough day with not great news.  I can only liken it to the "Upside Down" from Stranger Things.  Barb wasn't there but it was still dark times.


Picking up where we left off yesterday:

Nicole ended up being in surgery for 9 hours.  Two different surgeons worked on her.  Dr Crofts the Plastic Surgeon did the breast reconstruction and Dr Tittensor the General Surgeon did the mastectomies.  She has a great last name for a mastectomy specialist. She was destined for glory.  Dr Tittensor was in charge of a few things:

1) Removing the tissue out of each breast.  I assume the procedure went something like this but not as delicious:



2) Removing and sampling lymph nodes to determine if the cancer has spread beyond the breast tissue.

3) Being awesome.  Dr Tittensor is fantastic.  We heard nothing but good things about her from Ogden to Provo.  Having worked with her, we get it.  She's great.  Dr Crofts is amazing too.  He's the whole reason we came all the way to Utah Valley for this surgery.

I was hoping to hear from Dr Tittensor around 2-3 hours after surgery started when we expected she'd be done with her portion.  I sat across from the double doors to the surgery area in the lobby watching like a hawk for any movements.  I had the entire hospital lobby to myself. As Bruno would say: Don't believe me, just watch:




I was a bit anxious to get updates because I knew that we would know with 90% certainty if the cancer had spread.  She updated me at around 3 hours then again at 4 hours.  When Dr Tittensor walked out the second time, I immediately knew it was bad news.  Of the two lymph nodes they sample and biopsied from her armpit, one was clear but one was cancerous. This was pretty hard news to receive because the intensity of Nicole's future treatments were riding on the lymph nodes being negative.

Dr Tittensor went back in and removed five more lymph nodes to send in for testing.  She said one looked a little suspicious but the other four looked normal.  These were sent off to pathology and we won't get the results back until Friday at the earliest but most likely sometime next week.  We don't know for sure what these changes mean in terms of the cancer stage and grade.  Before this procedure she was considered to be in Stage 2A.  If the cancer only spread to the one lymph node then she would be upgraded to Stage 2B.  We're hoping it hasn't spread any further and she can remain in Stage 2.  I don't like that I used the word upgrade for that.  It sounds like she's getting promoted to something better.  It's probably more appropriate to say "downgrade".  I could have just gone back and changed the word from upgrade to downgrade but I made it this far and it's too late to turn back now.  We're past the point of no return.  Welcome to how my brain works, it's a bumpy ride but always an adventure.

So that sucked.  It was hard for me to receive the news because I knew that my beautiful wife would have to wake up from surgery to this bad news after going in with so much optimism and hopefulness for good results.  It broke my heart knowing for the final five hours of her surgery that I had to break the news to her.  These results changed the intensity of Nicole's future chemo treatments.  It is assumed that Nicole's chemo protocol will be upgraded to a TCH-P cocktail (I don't have the energy or brain power to explain what that means but Google does so click the link for more info).  This will be a six dose treatment with one dose every three weeks, spanning 18 weeks.  She will then continue to receive antibiotics every three weeks for an entire year.  This treatment will likely wreak more havoc on her reproductive system which could make it much harder to have kids.  This is the hardest part for Nicole.

Nicole was so sweet when she woke up from anesthesia.  She grabbed my hand and just kept saying "I love you so much" and "I missed you so much".  She couldn't open her eyes but had small tears in the corners of them.  At first they were tears of joy.  I knew it was only a matter of time before she asked me how it went.  I kept changing the subject by saying "Just close your eyes" or quickly asking her other questions to divert her attention.  After a few minutes she opened one eye, looked at me, and asked "Did it spread to the lymph nodes?"  I didn't have the heart to lie to her or divert her question.  I just looked her in the eye through tears in my own and said the words that we were hoping we wouldn't have to hear or say, "the cancer has spread to the lymph nodes".  She was still a little groggy from anesthesia but the news shattered her.  She just cried and repeated the same four phrases over and over, "Oh no love, I am so sad, I am so sorry, This is the worst."  For me personally that was one of the hardest moments for me during this whole cancer journey.  It absolutely broke my heart watching that news just crush her hopefulness.

After recovery we were able to go into the hospital room.  Nicole was in a lot of pain last night. To top it off she was nauceous from the morphine.  There's nothing quite like vomiting right after the meat in your chest cavity was ice cream scooped out of you.  It was hard to watch.  Finally around 1:00am she was given an anti-nausea medication that helped with the nausea which also helped her sleep.  We were both able to get a few hours of sleep with the nurse coming in every two hours to check on her.  It wasn't all doom and gloom, there was one fun thing from last night.  Nin's pee was Irish Green from the dye.  So that was fun.


This morning Nicole woke up so happy and optimistic.  It was like she needed those few, crappy hours of sleep to rejuvenate and re-energize her soul.  I was blown away, I thought it would be doomsday when we woke up but it wasn't.  Her bright spirit and positive attitude continues to amaze me every day.  She could have easily woken up and had a pity party for herself but she didn't.  She made the choice to accept the results and prepare herself for the next steps like a complete and utter badass.  Which leads me to one of the best text messages of encouragement she received before surgery yesterday from her boss Adam.  Here it is in all its glory: