new scan results on different chemo

I have been bad at writing lately...I usually have good intentions, but naturally life just gets in the way.  Sometimes I just don't want to talk about the everyday grind Ashlee faces while being on chemo treatment.  In the Middle of June Ash started a new Chemo regimen called Fol-firi.  When you say Fol-firi is sound like "fury"  I picture that movie with Brad Pitt...and an army of craziness going in to destroy Ashlee's cancer.  I actually never saw the movie, but I heard it was pretty violent...I think sometimes Ash feels like she has a war going on inside of her.  

Anyway, we continue to hope the chemo can keep things in check.

Today we got the results of Ashlee's latest PET Scan.  I think I have mentioned before how much anxiety and nervous go along with these results.  So naturally we sat in the little Dr's room for almost an hour past our original appointment while we waited.  It's never fun going to the Doctors, but when you are sitting around waiting for such serious results, your head automatically thinks the only reason they are taking so long is because we are going to get a bad result.  So after sweating through my shirt and wanting to throw up for about an hour, Dr Sharma and his nurse finally came in.  Luckily we got some good news.  Ashlee's tumors are still lighting up, but not as much as before.  The plan moving forward is to stay on this chemo regimen for about 9 weeks and then they will scan her again and then reassess.

I can't imagine Ash going through the wide range of painful side effects and not having a response, so in the scheme of everything, today brought some good news.

Life continues to move forward, and Ash continues to try to make the most of the days she feels good.  We love all of the people that reach out to us and the many prayers said on her behalf, they means so much to us!   We wish we could spend time with everyone!

Not what we wanted...

I know a lot of people are wondering how things went today.  Unfortunately we didn't get the results we were looking for.
Ash's cancer has spread to her lungs and is showing up again a little in her abdomen area.  That explains why she has been battling this cough for the last 6 weeks.  I was worried about the cough and now we know why.

Ash will be starting a new regime of chemotherapy...They told her that she will probably lose her hair this time, and she will be getting treatment every week...

We are kinda in shock again...even though the Dr's we always clear that it is just a matter of time before the Cancer gets active again and she has to get on treatment..we were still hopeful for a good result.

What is hard is last week Ash road a fun 50 mile bike ride with a bunch of her friends and felt time.  She remains positive, and is trying to be strong... but all of this is scary and dealing with Chemo is always scary because even the Doctors don't really know how each person will respond.

We get more results tomorrow

I guess we should maybe change the blog to 33 and Cancer.  Since I last updated this blog we have been fortunate enough to do a lot of fun things.  Ash turned 33 in May and we are hoping her 33rd year will be a good one.  We also celebrated our 10th Anniversary, and were able to take a trip to the Dominican Republic with some friends.  We made a quick trip up to Jackson Hole/ Yellowstone, and have been trying to take advantage of Ashlee being off of treatment.

It seems like I usually end up writing these posts in the waiting room at the hospital...It usually is the only time I don't get distracted with something else.  The emotions are usually brimming when we are here...it is hard to be here, we both still feel like this is just a dream that we are waiting to wake up from.  I remember a Dr. telling us that after a while you will find your feet, and be able to push forward.  I guess the shock has worn off a bit, but I kind of think that has something to do with Ash being off of treatment for the last 3 months.  Life has felt somewhat normal...as normal as life can be...but there are times Ash says she wishes she could just wake up in the morning and feel ok, and have the energy she use to to have.  Like all young moms it is always an uphill battle to have the energy to keep up with kids, house stuff, and personal stuff...but sometimes I think the mental weight can be just as tiring.

There are a lot of nerves around the Pet scans.  While not on treatment we always worry that the cancer is growing or changing, but the idea of being on treatment is tough because we now know the pain and damage it causes to Ash...As Ash gets closer to the scan days she gets a little bummed and nervous.   Internally I am a wreck, but I think we both just try to hold it together for each other and our kids.  We have been lucky enough to have friends and family distract us the best they can with fun activities, outings and trips to help us focus on fun and happy things.  Looking at Ash you would not know anything is wrong, a have had a lot of people tell me that they have to remind themselves that she is dealing with cancer.

The last procedure she had as a Bronchosopy.  They basically filled her lungs full of Saline and then sucked it out.  They tested the saline for infection and fungus.  Both tests came back negative.  The reason for the tests was due to a few Nodules growing in her lungs...we are hoping they are not cancerous.  The problem with the procedure is that it left her with a terrible cough.  Ash gets coughing fits that sometimes she can't stop for awhile.  They are usually bad in the morning and nights.  She didn't have them prior to the procedure (which was about 6 weeks ago)

Tomorrow we meet with her Oncologist and will get her most recent results, and then know what they near future will look like.  Keep Ash in your prayers and I'll post tomorrow or the next day with the results
Thank you to everyone for thinking of her!

What a night!

(thanks Steve Smoot for putting this video together)

On Monday April 20th 2015 an amazing team of wonderful people put on a benefit concert for Ashlee.  The main goal was to show Ashlee how many love and support her, and to also raise money for her treatments and wellness.

My cousin Jason Hewlett is one of the best corporate entertainers in the business and volunteered his talents in efforts to raise money for Ash.  Along with Lindsay Hadley and her team,  and Anything for a friend they put together an amazing night.  The show sold out and over 1000 people were there.  So many people donated time, money, baskets, and an array of items that were auctioned off.  It is hard to put into words how wonderful both Ashlee and I felt.  To see so many people gathered on her behalf was so powerful.

When we got home that night Ash said she felt bad that she maybe only was able to see 30% of the people that were there.  I told her that no one expected her to be able to see everyone, and that fact that she was't able to connect with everyone was a sign that it it was a very successful night.

For those of you that we did not get to thank, and hug, we love you all so much and are so greatful for everything you have done, and do for us!!!!!!!!!!!!!!!!!!!!

For those that know us know how much we value our family, friends, and relationships.  We feel so blessed to have the support we do.  Ash occasionally says she doesn't feel deserving of the all the things people do for us...it is still hard to be on the recieveing end all the time, but it is also very inspiring and heart warming.  In our lives we have never seen a community, friends, and family all join together for one person.  We both feel so blessed and humbled.

As far as Ash's health goes, we kind of feel like she has been in a holding pattern.  Her last Chemo treatment was in Mid March, and she has to start back up on May 6th.  Her lung test came back negative for infection, but that doesn't really tell us a whole lot about what is going on, it just rules out an infection.  They will watch and wait.  We pray it isn't anything.  After another 2-3 rounds of chemo the Dr's will do another scan and then assess from there.

As I write this post we are celebrating our 10th anniversary today.  We can hardly believe it has been 10 years.  I feel like my greatest accomplishment is being lucky enough to have been married to Ashlee for the last 10 years.  We have 3 beautiful children that we are so proud of, and bring us so much joy.  We love the life we have built...but I think the thing we are most proud of, is we really enjoy spending time together.  In the face paced life we live in it is so hard to find the time to really enjoy your spouse.  I was telling a friend, that Ashlee's cancer is the hardest challenge we have faced but the one thing is has given us is almost a perfect perspective on our marriage.  We have spent almost 1/3 or our lives together, and we have so much faith and hope that we will be able to grow old together and celebrate our 50th anniversary.

newest results

These scan results are unbelieveably nerve racking.   Always hoping for the best result, but trying to not have unrealistic expectations is the hard part.  The Doctors have been good to try to set expectations, but but still give hope.  Ash has been really brave and strong through the entire process...I don't know how she does it, but she tries to maintain life and a normal environment for the kids much as possible.  Almost everyone that knows what she has been dealing with will tell me they can't believe she has cancer, she looks so good, and is positive.  Even sometimes I forgot.

We got Ashlee's scan results today.  We got some good news and so news we are not super excited about.  The majority of the cancer has responded well to the chemo, but the Doctor would like to see her have 2-3 more infusions of chemo before giving her a break.   Ash's blood counts are pretty low again, so they can't give her treatment today, and we will wait until next week...

There are a few nodules in her lungs that the Doctor has recommended for her to do some additonal testing on her lungs and to see a pulmonalogist.   The thought is that the nodules are hopefully not cancerous, but something else...we should know in the next few days.  We are hoping it's nothing to be worried about.

Bad Blood

As the weeks continue on Ash has consistently been having issues with her blood work.  Her white blood cell and platelet counts are low.   This causes a few problems.  First, she has to be concerned about getting scratched or cut, and she bruises easily.  Second, her immune system is weakened so she is susceptible to getting sick a little easier.

Due to the low counts when Ash went into receieve her Chemotherapy this week, they told her she can not take the Chemo with her counts being so low.  She is now scheduled to go back on Monday to get new blood work, and hopefully get her Chemo treatment.  I guess there is a silver lining, she gets to feel decent for the rest of the week.  She really wants to get through these next two infusions of Chemo because she will get another PET scan after the treatments.  If she gets a really good result then she might be able to get a 2 month break from treatment.  If she doesn't get the results we are hoping for then she will have an additional 4 infusions before her next scan...and then I guess we will go from there.

Right before and right after the last infusion Ash had some horrible, sever upper stomach pain.  The pain was bad enough that it caused her to throw up several times.  Normally when you throw up you get some relief...When she threw up it caused the pain to worsen.  After about 45 min or so the pain would subside enough for her to get some relief.  I forced her to the hospital to get an ultrasound, and in typical fashion, nothing showed up on the ultrasound, and no one could give her an explanation.  We are hoping that pain doesn't show up again.

For those of you who know Ashlee, know she does not like taking medication.  She is always worried the medicine will only hide one sympton and create a different problem.  She tries really hard to get off the nausea, and pain meds as fast as possible...She is way tougher than I am...I will openly admit that I am a baby when I am sick and will take anything to make me feel better.

I am very committed to trying to fit in as much fun stuff as possible when Ash feels good.  We were able to travel to Dallas, TX to visit Travis and Ashley Miller for their baby's blessing.  They are some of our best friends, and it only took us 7 years to visit them.   We met a lot of wonderful people and had so much fun with them.

We were also able to spend some time with Mike and Brit down in St. George.  The warm weather and sun was wonderful, and we were able to ride bikes, sled down the sand dunes and relax.

When Ash has days she feels good we try not to waste them...I guess it's a good lesson to learn, to not waste the days we feel good, and take advantage of the relationships we have.  We feel like we have the best support system in the world...it is beautiful to see how everyone shows up in ways that we never knew we needed.

PET Scan results...and thoughts

As nice as the Huntsman Cancer Institute is, we are glad it is tucked up by the University of Utah because we never drive past it.  When we aren't there we feel we can live life as normal as possible...

Ash says she knows that her Cancer currently doesn't have a cure, but to live with that daunting thought is too much to think about everyday.  I love that she says she just "puts her Cancer in her pocket and doesn't really think about it until she has to".  She is finding a way to compartmentalize certain parts of her life.  So much of everyday is focused on trying to have her body and mind in the right place to be able to move forward with her diagnosis.  She has changed her diet, sits in a Hyperbaric Chamber  about 5 times a week for 1.5 hours, tries to read good books, and stay as active as possible, she even gives herself these horrible shots that keep her white blood cell count up... all could be small reminders of the cancer, but she is finding away to adapt to her new normal.  I am an impressed husband!

The lonely place on earth

We just finished up with Dr. Sharma and his team.  They shared her results with us and finally after 3 months of bad news, and crappy breaks they said that she is responding very well to the Chemo.  The tumors have started shrinking.  The short term plan is to have 4 more infusions of Chemo and then reassess.

Tasia and Teresa visiting Ash during Chemo

When we walked out of the Doctors office she started to cry...She said she felt so relieved to finally get some good news.  To know that with all the pain and suffering things are moving in the right direction.   We are so new to all of this, but it has been 3 months since she has had encouraging news.  At the same time Ash feels like she shouldn't be too excited, because she will have to deal with the Cancer for the rest of her like, or until the find the cure.  That being said, the goal is to send the cancer into a resting state for as long as possible, and then she will have to resume treatment in some form...as long as it is not spreading she is happy.

Her new moto is "Faith before Fear."  There is so much uncertainty, and fear in life that if you focus on that or live with it, life would be miserable.  Ash is trying to live one day at a time and have faith that this journey she is on is the journey she is suppose to be on.

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.