Calm Before the Storm

Chemotherapy starts tomorrow. His specific type of Chemo is called Folfox.

20160504_120624

How FOLFOX chemotherapy is given and possible side effects.

FOLFOX for the treatment of Colon Cancer

FOLFOX is the acronym for a chemotherapy regimen used in the treatment of colon cancer.

 DRUGS IN THE FOLFOX COMBINATION:

FOL

= Leucovorin Calcium (Folinic Acid)

F

= Fluorouracil

OX

= Oxaliplatin

Chemotherapy is often given as a combination of drugs. Combinations usually work better than single drugs because different drugs kill cancer cells in different ways.

MOST COMMON SIDE EFFECTS OF FOLFOX

  • Risk of Infection

  • Mouth Sores

We were also told to expect an extreme sensitive to cold, fatigue, nausea and neuropathy .  Amos goes in for a 5 hour infusion at MD Anderson Cancer Center from 10:30 am to 3:30 pm tomorrow.  He will then be sent home with a pump that will run Chemo through his port for 2 days.  He will then return to the hospital Saturday to return the pump.

This will happen every other week for 6 months.  We were told that day 3 usually when the side effects are the worst so we are planning for some tough Saturdays for a long time. #maythe4thbewithyou #teamamos

Dr. Kundranda will take blood every two weeks to make sure the therapy is shrinking the cancer.

Thank you to Nurse Jared for helping Amos with his ostomy today!  He was so ready to change it but had lost his template.

Jared also wants Amos to start tracking his weight daily since he has been losing weight too rapidly.  He started at 205 lbs and is at 183 lbs today.

Cleared for Chemo

Despite setbacks in Amos’s recovery, the surgeon cleared him to move to the next step by getting him an appointment with the oncologist tomorrow morning.

Dr. Gimbel said Dr. Kundranda owed him a favor.  Dr. Gimbel put Amos on new meds and wants Dr. Kundranda to get him started on the Chemo as soon as possible.  He feels that the tumor is causing his back pain and blood clotting rather than effects from the surgery. Shrinking the tumor quickly seems to be top priority.

We have prayed about it and feel that this is the route we need to go right now.  We are also using natural supplements, given to use by friends, to help with side effects and to help shrink the cancer.

Whole foods and alkaline foods are the nutrition plan for now.  He has now lost 20lbs and his appetite is gone. I try not to be jealous of that.

20160503_102748

Amos had no throwing up or fever today, but moments of intense pain and more blood clots.

My sister Phoebe and her husband treated us to a really nice lunch at Outback Steakhouse.  I’m so grateful they live so near the cancer center.

The other appointment we had today was with the geneticist.  They shuffled Amos to her since it is not considered normal for a 40 year old to get colon cancer.  She said 95% of colon cancer patients are over 55.  They are doing some tests on his blood to find out if he was genetically predisposed or if this was sporadic.  It was very useful to be able to pull out our FamilySearch app and look through his close ancestors who died before the age of 50.  Amos has very few instances of cancer in his family. We will let you know once we get those results in a couple weeks.  This is good information to have for preventative care for family members if it is hereditary.

The geneticist was more interested in doing the test on my family since I seem to be the one predisposed.

Amos and I decided that I must have been the one who was supposed to go through cancer, but he made a deal with Heavenly Father in order to take it for me.  #ilovehim

We are looking forward to having Nurse Jared at the house tomorrow after we get back from the oncologist.

 

Suprise Dinner and a Movie!

My original title for today’s post was Hard Day, but just as I began to type we got a knock at the door.  It was a wonderulful family in our ward who knew exactly how to make the day better.  The Staman Family arrived with a suprise; an amazing home-cooked meal, a movie, popcorn and treats!

20160502_161208

20160502_161318

Little did they know I had Amos on a diet today that didn’t work out.  He threw up his lunch and I had no idea what to make for dinner.  What they brought was perfect. Thank you Stamans!! #earthlyangels

Last night Amos had a low grade fever.  This morning we had to call Dr. Gimbel’s office because of rectal bleeding.  He was confused because he felt the urge to have a regular bowel movemet.  Everything has been coming out through the colonostomy, not the rectum.  He realized after the second time it happened today that they were blood clots, not stool.  

We thought about going to the ER, but Dr. Gimbel’s nurse said to watch for larger clots, dizziness or lightheadedness.  Unless that happens tonight, we will hold out until his appointment with the surgeon tomorrow morning.   Praying for a better night for him. #teamamos

 

Fast Sunday

I’m not used to driving.  Amos wants to be able to drive by Thursday.  Just riding in the car is still painful for him.  Getting dressed was fun.  We got him a bigger belt which wasn’t to hold up his pants but to hide the fact that his pants weren’t buttoned.  He wore suspenders to hold his pants up.  His suit was already too big, but now that he has recently lost 15lbs, it looks even bigger on him. He was grateful for the extra room.  He normally stays in his suit from early morning to late at night on Sundays.  Today he got out of it as soon as he got home.

IMG_20160501_185410

We fast on the first Sunday of every month so the money from the two missed meals can help fill urgent needs of families in our area.  We also fast for spiritual strength.  Today we were grateful to have a purpose for our fast.  Amos and I fasted with a hope that it might regulate his insides.  Eating and processing food has been such a struggle for him.

Amos made it through the first hour and a half of church, then needed to go home.  He can’t stay in the sitting position for more than about an hour. I watched him struggling not to weep through the sacrament song In Humility, Our Savior.  I can only imagine what he may have been feeling.  I admire him so much.

I took Kirra home to take care of him then went back to play the piano for Relief Society.  She had dinner ready when we walked in the door which was fantastic since our church is so late in the day.  I love having children who love to help.

We have a follow up appointment with Dr. Gimbel on Tuesday.

All our love and gratitude to each of you! #teamamos

No Pain, No Gain

Amos is off pain meds today.  It has been a very uncomfortable day for him and I think it’s too soon but he doesn’t like how they make him feel.  He does act differently when he is on them and I’m glad to have the real Amos back.  He can focus better and he’s much sweeter without the meds.  The sad part is that the pain is still pretty strong. 🙁

He is making the best of it, reading good books and keeping his mind on other things.  He got up this morning and taught Ruthie how to make French Toast.  She was so happy.

20160430_081342

Last night Amos and I enjoyed a really nice stay-at-home date, but we found out Chinese food causes some problems.  We are going to start considering Cancer Diets.  Nurse Jared talked to us yesterday about an alkaline diet.  We believe that might work to keep the cancer from growing.  We have other friends who know more about this kind of stuff than we do.  We will do all we can this week to gather info on the subject.

My dear friend, Amanda, who I recently served in both a primary and young women presidency with, saw the post yesterday and realized our Nurse Jared is her brother!! #notacoincidence

I spoke to a beautiful lady our age named Heather today who gave us a box of ostomy supplies she no longer needed.  We learned that ending up without a colon is actually an option with something called a J pouch.  She spent moths living at the Mayo Clinic and spoke very highly of the doctors there.

Nurse Jared

20160429_124630

We love Amos’s new nurse, Jared. He’s super friendly and positive.  He said he has been a home health nurse for a lady for 2 years who also had stage 4 colon cancer at age 40.  He said she recently beat it and is cancer free.  That’s what we like to hear.  Nice job Jared! He fixed up Amos’s ostomy and right before replacing the bag, we got a knock on the door.  It was my little brother Charlie and his beautiful family.  He had tiny kids who we may have scarred for life with the sight of intestines. 🙂  Jared was very sweet to explain to my 5 year old neice, Clair, how an ostomy works.  She didn’t seem too freaked out and said she wanted to be a nurse when she grew up.  It was theraputic for both of us to have those sweet babies over to snuggle today.  We also think it’s a amazing that Jared recently started taking the missionary lessons after being an inactive member for many years.  We hope we can help him as much as he is helping us. #miracles

Our kids came home with more student-written letters for daddy.  One of the students wrote ” I hope you feel better and I love you to death.” Haha!

20160429_161512

Thank you all for the notes and bread and goodies and donations and thoughts and prayers and ideas and shared experiences that continue daily.  We also appreciate our ward members who have increased temple attendance this month just to put his name on the temple prayer roll.  You inspire us with your faith and service.

Amos’s bishop interviews went well last night except we realized we need to get him a bigger belt before Sunday.  He has lost a lot of weight but he is still swollen and tender around his belt line.

Kirra and Evie have some exciting news we can hopefully share soon about being invited to perform on a certain unamed show on NBC.  We’ll keep you updated on that exciting development as things unfold.

20160429_163856

Tonight is date night! We are planning on some Chinese take out and a movie night at home if Amos isn’t too tired. He’s loving the pink body pillow today. #teamamos

Cleaning Day

The nights are getting better and Amos is healing well.  He looked at himself in the mirror for the first time today and said he now understood why I was so upset about the bruising.  He didn’t realize it goes all the way around his back and down his leg.  We think that since the cancer was lower than the surgeon anticipated the robot arms had to travel far from the incision site, through a lot of tissue, in order to try and reach it.

20160428_131510Today was cleaning day.  I’m not sure why it makes me happy but it does.  It was wonderful to be with Amos today. I’m going to get spoiled having him home for a month. We talked, ate lunch, walked to the mailbox, but he mostly watched me clean.  When I clean I normally rearrange furniture.  It’s some kind of illness I have.  Amos watched me trying to move a couch around a corner and he desperately wanted to help me.  I got it.  He knew I would but I think it is difficult for him not to be able to help.

IMG_20160428_103824He also desperately wanted to go to the girls’ awards assembly this morning.  Having been to many of those, I knew it wouldn’t work for him.  He had a panic attack at the thought of someone touching his stomach yesterday.  I can’t imagine what would happen if anyone bumped into him in that crowd.  We have a girl in almost every grade so we would have had to sit through all of them on hard bleachers.  Thankfully Sandi and Evan are here and able to fill in for us.  I’m sure the girls loved seeing grandma and grandpa Dance there to take their pictures.  The girls got several top awards for grades and behavior.   We are so blessed to have such amazing children.

Grandma and Grandpa Dance will be going back to Idaho tomorrow and we want them to know what a strength they have been to us these past couple weeks.  Amos will be the first to tell you that he is a mama’s boy and he was so grateful to have his mama here during these hard days.  We hope they have a wonderful time in India next month visiting Amos’s sister Jennie. (We love and miss you and your family Jennie!)

20160428_145135

Amos got a haircut today and is going to put on his Sunday clothes to provide bishop interviews from the house tonight.  We are also looking forward to a visit from the stake presidency this evening.  Good thing today was cleaning day.

 

Someone Else’s Story

Amos is feeling a little better today.  We celebrate any good news around here!

IMG_0413

My sister, Phoebe and her husband Ken, brought over an electric recliner last night from my other sister Carrie’s house. It helps him sleep better and we are so grateful.

Amos had his first visit today from a home health nurse.  His nurse, Jason, seemed a little shocked by Amos’s bruising from the hematoma.  It is pretty scary looking, but it hasn’t changed much from yesterday so that is a good sign.  We were more concerned about the blood blisters under the tape on the incision sites so we had Jason call Dr. Gimbel about those.  They said he could cut off the ends where they are causing the irritation.  Jason didn’t want to do it himself for liability reasons.  We changed one yesterday ourselves and it seemed to help a lot with the pain.  We might end up replacing the others too.  His skin is really sensitive to something they used.  Home health nurses will continue to come to the house twice a week for 3 weeks to make sure everything is healing up alright and assist him with the ostomy care.

pam2This journey has been difficult for me because it is too familiar.  Five years ago my mom, who, like Amos, never complains of pain or discomfort, ended up in the emergency room with severe abdominal pain.  This woman who had 9 children without a single epidural was one of the great ones.  Her radiance, optimism and goodness were beacons of light to everyone around her.

We got the word that they had found a large mass in her abdomen that was stopping her from eating and tests confirmed that it was late stage cancer. I remember feeling so sad that she wasn’t able to eat and I remember they had the surgery planned for over a week away.  It was unacceptable to me that she would have to go so long without eating so I found her a different surgeon in Scottsdale who could do the surgery sooner.

The story continues to follow closely what Amos is experiencing as they were also unsuccessful in removing her tumor stating that it was too massive and widespread.  Family flew in from all over and we spent time with mom at the hospital.  They even sent her home just as Amos is now home.

She didn’t do well at home and ended up back in the hospital where they decided there was nothing else they could do for her and had her transferred to hospice where she passed away from kidney failure within 10 days of her initial visit to the emergency room.

I have to remind myself daily that this was someone else’s story.  This was my mom’s story.  As she peacefully passed away just days after her 70th birthday, she had fulfilled her mission.  I believe that Amos, on the other hand, has not yet fulfilled his mission.  There is a purpose for what he is going through.  His story will be different.  He will heal from this and survive every other treatment and future surgery until his body is well and whole.

Amos’s oncologist estimated that with treatment he could survive for another 36 months.  I believe we will have our friend, dad, son, brother, husband, counselor, teacher, coach and bishop much longer than that. I love my best friend.  #teamamos #trustinthelord

 

 

Once a Tiger, Always a Tiger

378976_2516829039069_10464465_nToday reminded me of a wrestling match.  Amos was a Tiger at Gilbert High School as a teacher and coach for over 9 years.  He coached wrestling and taught math and science to the emotionally disabled students.

There was about a half an hour today where Amos seemed to be defeated.  Pain and despair and even panic overtook him.  He cried out that he didn’t want to do this anymore.  One of his incision sites has become infected, pain and nausea are overwhelming and he couldn’t find a comfortable place to sit or stand or lay down.  He can’t take blood thinning pain killers because of the internal bleeding.  The non-blood thinning pain killers aren’t quite reaching his level of pain, but I watched him turn things around and calm himself.  He asked his girls to come in and sing to him.  He took the power that provided him and did a reversal.  He has been at peace for a couple hours and explained his regret for losing hope that relief would come.  He is learning to manage moments of despair.

13051567_10205909061916964_1337859932030933794_n13113309_10209176953760108_326921585_oThis morning I went to Gilbert High School to get some more Team Amos wristbands from Char Fujino ( I love this lady.)  She handed me a large stack of cash and told me the students and staff had raised it for Amos.  I couldn’t believe how incredible this was.  She told me donations kept coming in and she would hear them say over and over, “once a Tiger, always a Tiger.”  We are so humbled by the good hearts of those students and teachers.

I took the cash directly to the bank where I repeated the story to the 3 bank tellers who were floored.  They wept as they counted the money and said they couldn’t believe high school students would be so considerate to a former teacher.  Amos is one of those people you just can’t help but love and everyone who spends enough time with him realizes how special he is. #teamamos #reversal #twopoints

 

He’s Home!

After a super sleepy day,

20160425_152114

Amos was finally released from the hospital at 4:30 pm.  Another Psychologist from the prison just visited and told him they came up with a new prison name for him…

SEMI COLON

20160425_174249

We are so happy to have him home! The majority of the right side of his body is black and blue and the left side has the colostomy which will take some getting used to.

Evelyn woke up with a temperature of 103.6 degrees.  Not only is this difficult timing because of the germs, but tonight is also her school’s musical The Wizard of Oz and she is The Wizard.   We’ll see if she can pull it together before then so her teacher, the fabulous Faith Flores, doesn’t have to step in for her.   Sweet Grandma and Grandpa Dance took care of the girls today and dinner and everything in between.

We came home to a beautifully professionally sanitized house thanks to Sister Wheeler – or Super Woman as we now call her!  From the moment we found out what we were up against, our ward members, family and community have rallied around us and taken care of our every need.  I just bought a large pack of Thank You cards and realized I still wouldn’t have enough.  We are overwhelmed with your service and goodness.

Tomorrow Amos’s dad, Dean, goes back to Florida and I’d like to publicly thank him here for his boundless charity towards us.  I believe possessing this level of charity is a rare gift.  He also has a talent for seeing things that need to be done and doing them.  I am amazed by his energy and grateful that he could be here with us for the past two weeks.  Now we need to learn to get along without him here.  At our last few minutes at the hospital today Amos said he was thirsty and Dean automatically jumped up, then stopped himself, sat back down and told me to go ahead and get Amos a drink.  He said he was preparing me for tomorrow when he would be gone. That made me laugh.  He reminds me so much of my sister Phoebe.