Team Ashlee and moving forward

It has now been just over 3 months since Ashlee was diagnosed with cancer.  I don't think things have gotten any easier, and I don't know if they ever will, but we are trying to find out feet and figure out our new normal.  

Since I last posted Ashlee has started her Chemo Therapy treatments.  The first time she took Chemo she had a very uncommon reaction to one of the drugs in the Chemo, and had heart attack like reactions and had to spend 2 days in the hospital.  They have since stopped giving her that 

drug (5-FU) which is normally taken over a 48 hour period...and she just gets a small short of it during her 5 hour infusions.  Her 2 following rounds of Chemo did not give her those reactions as she did not have that part of the Chemo cocktail.

I had never seen anyone take Chemo before...I don't even know what I expected...It is such a painful and  scary thought to think about.  I imagined it would be a thick black substance with skulls and cross bones on the Chemo bag.  I assumed people would be crying in pain and loosing their hair on the spot.  Luckily it is not that intense.  Ash gets her port (a port is a direct line to a larger vien, that is placed under her skin and is there until it is surgically removed.  They put the port in so she doesnt have to have an IV placed each time) accessed and they hook her up to a bunch of IV bags, with a bunch of different drugs that make up her Chemo cocktail.  Her Chemo is called Fol-fox.

So far she has experienced an array of reactions, most of them are within about 5 days after her Chemo infusions.  Ash experiences nueropathy (numbness) in her fingers and hands, when she touches anything cold it feels like she is grabbing razor blades.  If she drinks anything colder then room temperature it feels like she is drinking razor blades, and if she breathes cold air she gets the same feeling.  When she cries it burns...not the actual tears, but right before the tears come out of her eyes...it is weird so she tries her best not to cry.  The fatigue is pretty strong for the first 4-5 days after Chemo and then she usually gets about 8 pretty good days in between her infusions which she gets every 2 weeks.  This last time her scalp hurt, and she looses a little hair, but more thinning...Hopefully she shouldn't loose her hair (it is a very uncommon side effect with this type of Chemo)  She gets random pains..different then the pains you and I get.  She gets a shot the day after Chemo to keep her white blood cell count up.  Your white blood cells are made in your bones...as a result of this shot she gets bone pains...they ache and are pretty uncomfortable, but Ash seems to be able to manage the pain and discomfort.   She says sometimes she just doesn't feel like herself...and I know there are more reactions, I just can remember then all.

The other day I could tell she wasn't feeling good, and we were out to see a movie with our kids...I just wanted to take her home to relax, but she said this is what it is...if I don't do things because I don't feel good, I would never do anything.  She is tough, and puts on a face that makes everyone feel it is ok, and she is fine.  

Unless you smoke and chose to abuse your body, Cancer is not a choice.  Ashlee did not chose this path, but she has a lot of choices on how she wants to move forward.  She is choosing to be strong, and live life.  2 days after her last round of Chemo we all went skiing.  She was exhausted after, but was so happy to be out on the Mountain, and with her kids.  I think it was important for her to prove to herself she can still ski.  Those little activities are victories.  For her to know she can still do what she enjoys is so important.  The following week she signed up for a few bike rides.

There are a lot of lessons to be learned from people going through challenging times.  Right now Ashlee's best day probably isn't as good as one of my bad days, but you would never know it.  Every time we walk into the Cancer center everything is so real, but Ash shows up all ready to go.  Her Doctor Dr. Sharma always says he can't believe she has stage 4 colon cancer because she shows up "looking like a model with a good attitude."  

My mom Sherri had this idea to get shirts supporting Ashlee, and surprise her on social media with family and friends showing their love and support.  With Seth Bradley from DNA cycling donating the shirts and many others they were able to pull it off.  Below are just a few of the pictures I was able to copy...there were so many more on instagram that I wasn't able to copy.  We continue to be overwhelmed by peoples love and support...there can never be too much of it GO TEAMASHLEE!

Today I am sitting at Huntsman Cancer institute while Ashlee gets her first Pet scan since being diagnosed.  Normally they would wait a few more weeks to get the scans done, but since Ash has had some uncommon reactions and they have had to change her Chemo regimen they want to see how the cancer is reacting.  If it is still growing, or if the Chemo has slowed it down.  We should get those results in the next few days...so please say a little prayer for her :)

I'll try and be better at updating this blog and keeping people in the loop.

Disneyland and an unexpected ending

The happiest place on earth, did not disappoint.  After our first day Finn said "that was the best day of my life."  As parents it melts your heart to see the pure enjoyment and magic that Disney creates for your kids.  Finn and Sophie are at that perfect age for a trip like this, as everything is so magical.

We met up with my sister Hilary and her family, my Mom and Dad from Colorado, Robbie, Lucy, and Caroline.  We had two great days at the Disneyland parks.  I forced Ash into driving one of the little motorized scooters...she wasn't happy about it, but after my sister told me her little foot tracker said we walked just over 10 miles the first day, I think I made the right desicion.  I might get one for myself next time :)  

During our last day at Disneyland Ash said she wished we could just stay there for awhile longer...the thought of what awaits at home is challenging, and to be honest I had the same thoughts.   What happened the night before we left was not what we were hoping for in reguards to extending our stay in Southern California.

The night before we left Utah to Disneyland Ash was in a lot of pain.  Mostly the right side of her lower back.  The pain was bad enough that it had her in tears.  She took some pain meds, and went to sleep.  Looking back to earlier that week she had similar pain, but it only lasted for a few hours and she was able to sleep it off...

Around 12:30am Ash woke me up looking for some medicine as she was in excrusiating pain.  I found some pain pills and gave them to her.  I could tell the pain was worse than normal.  She started to throw up as a result of the pain.  At about 3:30am she finally gave up and let me take her to the hospital.  As you could imagine I was scared that something was going on with her cancer.  I checked her into the ER and with her current circumstance they moved us to the front of the line and got her back and on some stronger medication.  It took a few hours to bring her pain down from a 10 to maybe a 5.  The CT scan found that she had a large Kidney stone that was too large to pass on her own and was causing blockage, so they ordered the surgery.   For those of you that have had Kidney stones, we know that they will bring the toughest to their knees in pain.  I have had them twice and I can say the pain is truly unbareable.

I woke Lucy (my sister in law) up at about 5am and asked her to come down from Santa Monica and help my Dad watch the kids.  Ash and I decided it would be best to get the kids home since we didnt really know how long we would be in CA.  I took the kids to the airport and flew them home to SLC and jumped on a flight back to LA 30 min later.  Luckily Lucy was able to sit with Ash for most of the time I was gone.  When I returned to LA Ash was still in the ER...after 18 hours in the ER they finally got her a room, but since it was Veterans day the hospital was under staffed so she could not have her surgery until the following day.

Wendsday they finally performed the surgery, luckily everything went smoothly...and finally after 3 nights in the hospital we were able to check her out on thursday and catch a flight home later that afternoon.

As a husband there is nothing worse than to watch your wife suffer.  To have to sit on the sidelines and watch your beautiful wife be handed one blow after another is almost too much to bare...I know that Ashlee has been an inspiration to many people.  She inspires me daily... to see her strength in the face of being presented with these challenges is inspiring.  That is one of the many things I love about her.  What I hate is the pain, fatigue, and fear she gets to deal with.  The trials she is faced with are what teach and makes others think about how they would handle these challenges if they had to go through it.  Those thoughts envoke a lot of real and raw emotions, good, bad and ugly...

Just now, almost a week post Kidney stone surgery is she starting to have less pain.  The kidney stone ordeal really took a lot out of Ash, so we had to push her treatments back a few more day.  The next few weeks will probably continue to be pretty rough.

Perspective

The last week has felt somewhat normal.  Since we put everything on hold while we wait to go on vacation life has felt somewhat normal.  The evenings are when Ash feels the effects of the cancer most.  She gets tired and has some pain, but she is able to mange things.

In so many ways we feel blessed that the Doctor told Ash she was able to wait a bit to start treatment.  That has provided the time and space to step back from the devastation and try to gather our thoughts.  We have been able to look deeper into diet and alternative treatments.  We have looked at so many interesting options, and Ash is choosing to do many of them.

Her diet is probably taking the most to get use to.  She is trying to eat a very high alkaline diet.  That mostly consists of green veggies, and weird recipes.  She is slowly getting use to it, and luckily my mom Sherri is very familiar with the diet and prepares most of her meals.   I look in the fridge and usually just shut it, because I have no idea what I am doing when it comes to her diet...Hopefully I can get better with it.

One of the biggest lessons we have learned in the last 3 or so weeks is a humbling lesson on Perspective.  When someone tells you that you might lose you life, or that your best friend, wife, and mother of your kids might be taken prematurely everything changes...literally in 1 second everything changes.  You don't care about the stupid things you once did, the things you thought were so important all the sudden really don't matter.  What matters is your family, your friends, the people you care about and the all those people who really do care about you.

One of my best friends always tell their kids "People matter, not things."  It really is just that simple.  We all come from the same place.  At the end of the day, we truly are brothers and sisters and part of something much bigger.  We have learned such simple yet meaningful truths in less than a month.  The most important one being that when we need the most love, support and help...we can know we have an army of people we can count on.

The love and support that we have seem is nothing that either of us have ever experienced, and truly nothing short of a miracle.   Seemingly endless amounts of people from everywhere have been willing to give their time, talents, expertise, money, knowledge, and experiences to us to try and help solve this challenge.  We have been brought to tears daily.

The road hasn't changed, and the mountain hasn't gotten any less steep, but our perspective has changed.  Many of us will face challenges that may appear to be too hard to overcome, and the truth is we may not always be able to overcome them.  So we must not worry about what we can't control, and focus on what we can do.  What we can do is get through today, and do our best to make it a good day.  We can hope that tomorrow and everyday after that will be an even better day...but for now we are just trying to follow the words of Pres. Uchtdorf  and "Treat each day as a gift from the Lord."