No Exceptions

Amos is pretty well healed up except a little tenderness from the scars.  Even his regular voice is back.  He is still sensitive to cold.  I’m not sure that will go away.  I am so grateful this wasn’t a chemo weekend.  We got to watch the new Saturday’s Warrior remake last night and we had no idea the writer, producer and cast would be there for Q&A after the movie. It was brilliantly rewritten and performed with a perfect cast. #saturdayswarrior

Today Amos took my big kids to get sports physicals and get Porter’s hair cut.  It’s so great to have him up and doing normal things. Blakely is still sick so while Amos was gone the little girls helped me disinfect the house again.

Amos still struggles with the colostomy.  His skin is sensitive to the adhesive so he left the bag off for a while today to give his skin a rest.  Being in public with the bag is also difficult.  No one notices it but he notices it so much that it’s hard for him to believe no one else does.  I struggle with the colostomy on the left and the chemo port on the right.  I wish they were both on the same side so I could have a safe side to snuggle.

For the first time in a month, his weight went up and mine dropped.  Happy day.  Let’s keep that trend going.

20160514_191101

This evening we had ward temple night.  We got to the temple and Amos realized he forgot his temple clothes.  He’s never done that in his life.  They will only provide temple clothes in rare cases when the person is coming from out of state. No Exceptions!  The matron took Amos up to see the temple president anyway.  The president told Amos he couldn’t make an exception and Amos would have to do initiatories then he could meet his ward up in the Celestial Room after the session.  As he turned to walk away the president asked him his name.  He said, “Bishop Abplanalp.”  The temple president introduced Amos to his wife before he left. As Amos was walking down the hall, he felt a tap on his shoulder.  It was the president.  He told Amos he decided to make his first exception because “the bishop should be with his ward.”  They brought him to fit him for clothes and he barely made the session.  #teamamos

20160514_193936

We went to Cafe Rio after the temple and had a great time with some of our ward members.  Amos was back to his normal, fun, entertaining self.  It was fun to see him like that.  As we left, Amos noticed one of his old students in the parking lot.  He approached him and asked him how school was.  The kid said “It sucks.”  Amos said, “that’s ok, it’s supposed to suck.” The boy said, “It didn’t suck when you were there.”  That made us smile.

Sepsis

Let me start by saying that Amos does NOT have sepsis.  He is having another great day with no issues except blood clots. Yay! I am studying sepsis and septic shock because Blakely (our 7 year old) is home sick with some kind of respiratory illness.  I’m worried about what may happen if that infection/virus spreads to Amos.

20160513_145311

I remember the chemo nurse warning us about sepsis.  Most of my knowledge about sepsis comes from episodes of House where it seems like most of his patients “went septic” at some point before he correctly diagnosed them.

Here is what I found out from MD Anderson about sepsis:

Because of weakened immune systems, cancer patients are at high risk for developing a disorder called sepsis. And because many people have never heard of this disorder before, they don’t recognize the symptoms early enough to get help. That’s why, worldwide, sepsis causes more deaths each year than prostate cancer, breast cancer and HIV/AIDS combined, according to the Global Sepsis Alliance.

Sepsis happens when the body’s immune system kicks in to fight an infection, but instead goes into overdrive and damages its own tissues and organs. This can lead to shock, failure of multiple bodily organs and even death.

Sepsis signs
Awareness of the problem and a high degree of suspicion are key. Sepsis can present in many different ways, but some of the most common signs are:

  • Fever and shaking chills
  • Reduced mental alertness, sometimes with confusion
  • Nausea and vomiting
  • Diarrhea
  • Increased heart rate, greater than 90 beats per minute
  • Increased respiratory rate, greater than 30 breaths per minute
  • High or low white blood cell count
  • Low blood pressure
  • Altered kidney or liver function

Most of the items listed here have already been happening to Amos because of the chemo or cancer. To be safe, the chemo nurse told us to take him to the ER at the slightest sign of fever (Anything over 100 degrees).

We are headed to a movie tonight which in my reading I found to be acceptable by doctors.  Hopefully his work environment at the prison won’t be an issue when he returns.

They said that being around friends and family is important for cancer patients so I know we can’t quarantine him or keep him at home all the time.  I can try to keep sick kids at a safe distance, disinfect, and we can avoid large crowds and people who are sick.  The rest I will leave up to the Lord.  #teamamos

Borning Old Normal Housework

After being in “emergency mode” with the paper plates and untensils and where all the consistency of family management has been on hiatus, it can be difficult to go back to a normal routine.  I tackled the regular laundry and cleaning that I had been avoiding.

20160512_103111

Amos was feeling really well today aside from looking frail.  After breakfast in bed, he did a crossword puzzle, read an awesome letter from Elder Sheperd (our nephew serving a mission) and wasn’t sleepy like he has been lately so he had no idea what to do.  His 30 day leave from work goes until the 21st of this month and his counselors have been handling most of his bishop responsibilities. I asked him if he wanted to mow the lawn.  He said he didn’t have a reason not to.  That led him to realize the sprinklers were a little off which was a perfect project for him and his dad (Evan) this morning.

Amos had a good afternoon nap and was able to sleep on his side for the first time.  He has bishop interviews tonight and he might even drive himself there. We are looking forward to seeing the movie Saturday’s Warrior tomorrow.  Our daughter played Emily in the 40th Anniversary stage production and we have a cast reunion at the theater Friday night.  

Saturday we are going to our ward temple night followed by Cafe Rio.

I am grateful for a no-chemo-brain weekend and I’m even thankful for borning old normal housework. #teamamos

Strength Entices Challenge

We ventured out to see Captain America today with the whole family since the kids had a half day.  Amos was unsure if he wanted to go after having some trouble with his colostomy bag this morning and an unsettled stomach.  He ended up going and we had a great time.

I loved this line from the move: Our Very Strength Entices Challenge. I have witnessed Amos’s quiet strength over 18 years and I’ve never seen anything defeat him.  I know this cancer won’t defeat him either, but it will challenge him to his limits.  I see the tendency he has had lately to get upset over seemingly small things like the kids making noise.  They don’t realize how their noise is multiplied inside his head and that it affects him in ways we can’t understand.  Despite these issues, he catches himself and redirects his mind so the negativity his body is feeling doesn’t consume him.

Another quote I loved from the movie was this:

18d8b27188f8d38548d239832be97493

I love that Amos does what’s right even when it’s hard.  His example has been so inspiring.  When he see’s people at church who haven’t attended for years but follow his example of strength, he feels it’s all worth it.  When he see’s members of his ward attending the temple daily just to put his name on the prayer roll, he feels it’s all worth it.  I love this man. He is wise and holds to what he believes to be true.  He is our superhero. #teamamos

 

Shockingly Cold!

Most of the side effects from the Chemo are gone today. One that remains is extreme sensitivity to cold.  They warned us about this before he started chemo but he must have forgotten.  He went to grab something out of the freezer this morning and got a pretty good shock.  He also still can’t drink anything cold without having his throat close up.  He keeps saying he feels cold eventhough I keep the house around 77 degrees.  I’m not sure how people who live in cold places deal with this side effect.

Aside from general weakness and sleepiness, Amos is doing much better today.  He drove for the first time in weeks and that sense of normalcy helped.

20160510_105718

Amos’s parents treated us to Firehouse for lunch and Amos actually ate his whole sandwich.  This is awesome since he is down to 179 lbs now.  Earlier this year he was 209 lbs.  Nurse Jared isn’t too concerned about his weight as long as he doesn’t go down another 10 lbs.  Hopefully he can bounce back up after today.

Nurse Jared is so great.  He noticed that Amos’s ostomy bag is causing some irritation so he took good care of it today and got him using some stoma powder.

I am noticing Amos coming back to focus after a couple dark days and I’m so grateful. #teamamos

 

Waves

Amos was  well enough to go to the girls’ America concert at school tonight, but not without difficulty.

He slept really well last night and the nausea was bareable today because it has come in waves rather than being constant.

We went on a walk this morning then he was exausted and fell asleep.

Then we went to lunch with some of his favorite GHS wrestlers then he was exhausted and fell asleep.

20160509_124113

He still isn’t back to normal but we think Mondays might be possible when he returns to work in a couple weeks.

We’ve been told this first one is the worst.  He really hopes that is true although they aren’t giving him the part of the chemo that cuts off the blood supply to the tumor yet.  They say that one will start in about a month to be sure it doesn’t cut off blood supply to the healing areas.

Tomorrow should be a better day.  We are counting on it because of your prayers. #teamamos

This is for Posterity so Be Honest

The effects from the Chemotherapy started yesterday and have continued constantly for the past 27 hours.  I keep asking him how he’s feeling (for posterity) and he can’t describe it or localize the pain very well.  He just makes sounds like poor Wesley made after being tortured by “The Machine” in Princess Bride.

Amos says his body is betraying him.  His stomach is constantly churning but he can’t get any relief from vomiting.  He says it isn’t pain although he does have occasional sharp pains. The terrible part has just been an extreme feeling of nausea with no sign of relief.  He is on Zofran for the nausea but it doesn’t seem to help.  I have to force him to eat and drink. He is extremely lethargic and seems to have lost his motivation to do anything. I have never seen him this way.  I said yesterday that it was like the flu, but this seems to be much different.

Chemotherapy kills cells that divide quickly so while it kills the tumor cells, it also kills good cells like the ones that line his intestines.  Since his cancer was already in his intestines, this seems to be putting more stress on them.

He didn’t make it to the ward party last night, but when I came back to check on him I found him on floor in the bathroom almost asleep next to the toilet.  I read online about how it’s better if we don’t leave him alone.

I am so proud of him for being strong and making it through the whole 3 hours of church today.  That may be the hardest thing he’s ever done with the constant pull he feels to hide within himself.  All morning he kept wanting to get up and be positive, but kept getting draw back to sleep or sadness.  He says the only relief he can find is sleep.  He felt sad about it since he loves to treat me like a queen on Mother’s Day.  I was grateful for a chance in 18 years to get to serve him on Mother’s Day instead.

Keeping him eating and keeping his mind distracted have been important.  Beautiful music, beautiful food, pleasant smells and peace in the home have been important.  I am so grateful to my children for providing the beautiful music.  This song contains lyrics from at least a dozen LDS primary songs.  I am so impressed with the lyrical brilliance of Calee Reed.  The lyrics also perfectly describe how I feel about my angel mother.

Happy Mother’s Day to all of you.  Amos is so happy that his mom is coming back tomorrow.

#teamamos

 

 

Too Quiet

I did some juicing this morning.  Carrots and pineapples are supposed to help and Amos didn’t think it tasted too bad.  I added a little of the coconut oil Phoebe gave us to help with the mouth sores.  She had a friend who says she avoids chemo mouth sores with a mouthwash made with 1 tsp of coconut oil dissolved in 1/4 cup water and a couple drops of peppermint.  We’ll see if that keeps them from coming.

Amos was sleepy all morning but no pain.  The nausea started on the way to the hospital.

20160507_142852

And now he feels like he as the flu so he went back to sleep.

20160507_155537

We’ll see if he’s feeling up to going to the ward party tonight. (Thanks for the super hero pillows Cynthia!) #teamamos

So Far So Good

Amos is doing alright with the Chemo so far. We are told days 3,4 and 5 are the worst so we are preparing for tomorrow.  He has been lethargic and pale with a weakened voice and a little nausea today but nothing terrible.

One thing I didn’t realize about Chemo is that the rest of the family has to be protected from it. I’ve been so worried about our germs reaching him, I never stopped to think about the Chemo harming us.

20160506_151059They talked about not using the same bathroom and not washing his clothes with ours among other things.  Having the kids at Aunt Pheobe’s house tonight will be better I think. She is going to have fun with the girls until we go back to the cancer center tomorrow.  Her husband is also kind enough to take Porter on a Father Sons’ campout with his cousin tonight.  Amos is so grateful to Ken for that since he will most likely have to miss ours in a couple weeks. #lovemysisters

Amos just had a visit from his supervisor from work.  He reassured Amos that his job would be secured no matter how much time he needed.  We are both so relieved. #teamamos

The Truth About Cancer

The truth about cancer is that the truth about cancer doesn’t matter to us right now.  This might not make sense to any of you but let me try to explain.

I have had many friends tell me to watch the series “The Truth About Cancer” before deciding on Chemotherapy.  A friend even sent me a code last night to watch it free. Thank you. The premise of the series is that natural cures and remedies have been repressed because they can’t be patented like man-made drugs and therefore can not make big money.  It further claims that this has led to a corrupt system that trains doctors to ignore nutrition and homeopathic medicine to focus only on pharmaceutical solutions.

I don’t disagree with this premise.  I have had personal experience with life-long inflammation of the lining of my chest wall that causes regular, sharp pain.  My sister gave me an oil blend that instantly removes the pain every time.  The Ibuprofen recommended by my doctor is useless because the attacks come on suddenly and are gone before ibuprofen could have time to work.

I have come to my own conclusion through many personal experiences that doctors are generally trained to push drugs and manage pain rather than manage the source of the problems and discover the best solutions to fix them.

I had two other friends send me a link to another video claiming that oncologists specifically get a large kickback when they prescribe Chemotherapy so they continue to do it for the money knowing it has a 97% failure rate.

I have a different friend who is a non-medical doctor.  She sends me regular reminder emails that “CHEMO KILLS.”  She tells me over and over that if we go with Chemotherapy I will be a widow before the year is over.

My friends mean well in their urgent attempts to lead us from falling into these snares.  I love you all and am thankful that you care that much about us.

While it is sad that serious corruption exists in almost every man-made system in our days, none of those things matter to us right now.

We have learned through goodly parents that corruption of the soul is a more pressing issue.  In fact, it is the cause of all other corruptions.  We feel Amos has been given this trial for a purpose that does not involve a crusade against the corruption of the the healthcare system.  We don’t know exactly what Heavenly Father’s purposes are because His ways are not our ways and His thoughts are not our thoughts, but we have seen miracles happen to hearts and souls through this journey and we know there will be more come.  That is what matters to us right now.

After prayerful consideration, we feel that Amos is meant to experience Chemotherapy.  We also feel it is wise to continue with some natural medicines and nutritional remedies as well.

We arrived for the Chemotherapy at 10:30 am.  After waiting and prep time, they actually started closer to 2pm.  He is doing alright.  He really wants to get back in time to do a few Bishop’s interviews tonigh before the side effects kick in.  They said we should be done in time.

It’s been fun having Porter here to entertain us today.

20160505_113305

20160505_140346

20160505_121604

20160505_123124

20160505_121607

#teamamos

We are sad we will miss Sean Astin at Jesterz tonight but were entertained by our favorite local comedians on their new series pilot during Chemo today! #jesterz

A special thank you to Amos’s uncle Kevin who started a GoFundMe campaign today and all who have contributed through that platform and donated here and in person and by mail.  #goodpeople

Thank you to Holly for helping with my girls today!