An Invitation to Angels

As part of our effort to be kinder in tone and in words, Roland asked to be cheered during the final week by having a banner made that reads, "Let's Invite Our Angels to Stay."  We feel like they are here when we are being kind to each other and they leave when we raise our voices or think of ourselves before others. Yesterday he finished the puzzle at the cancer center and so today he framed up the new one. He has mostly remained in bed with pain in his chest and clouds in his head due to the medicine for nausea, anxiety and pain. This has made it easier to be kind since he has had almost zero interaction.  :)  It is spring break, so all the children are home.   He ate a little before noon, but only because he is using the numbing mouthwash and then he has a painful recovery while digesting.   If you haven't given thanks for your healthy esophagus lately, now would be an excellent time for that.  He is supposed to teach tomorrow and wouldn't that be great. 

Dark Days

Oh how I hope this is the worst of it.  He has become quite down and there seems to be little I can do to bring back his winning smile.  He has asked for prayers specifically for help with being kinder with the children.  He has had a shorter fuse than we all are accustomed to and he has a strong desire for that to change.  He has made a goal of it.  His appetite is almost gone.  (Popcicles and crackers and water are all he will eat right now). He is on the strongest anti-nausea medicine we have.  He feels warm to the touch, but he says he feels cold and yet he doesn't have a temperature.  I don't want to leave him alone.  It is difficult to see him like this.  He received a blessing last night for which we are both grateful.  Truly we are surrounded by angels both seen and unseen.  We were not meant to hike alone this rugged terrain.  The view will be worth the toil.  We are becoming stronger.   I wouldn't trade this adventure for anyone else's.  This one is custom designed for our betterment.  "Trust, no matter what."

Nausealand

The after and cumulative effects of his treatment plan are mounting.  Every day it is becoming more difficult to be cheerful.  He has been teaching, so he comes home exhausted. Today he taught for an hour, came home and rested for 30 minutes and then returned to teach for another hour and then took his dinner in his room. The nausea is more constant and pronounced.  The acid reflux symptoms are bothersome.  Roland is very polite, but lately he hasn't been able to control his burping.  It has become painful to swallow and he hiccoughs often.  He has some "Magic Mouthwash" to help with esophagus pain, but he is not a fan of the numbing properties.  He gets dizzy spells and doesn't really want to do anything.  This is normal.  

How am I doing? Well, I feel like I am waiting for him to return to normal and then I realize this may never happen.  I miss doing fun, active things we used to do together. I don't dwell on those thoughts.  I am a little less fun generally and shorter on patience with my children.  Life feels more serious most of the time.  I am tired emotionally which transfers to physical fatigue.  However, I am grateful for all the help we have received.  I try to do something creative for fun everyday for me and something to amuse him; Today I set blueberries into a smiley face on his cream of wheat.  I am amazed by my children and how well they are coping.  I feel loved and not alone.  I know there is a reason for this even though I don't know what it is.  I know I need to not let this stop me from improving on talents I have and strengthening weaknesses.  I really do not like giving Lovenox injections morning and night even though he thanks me after every poke, but I recently learned that it is much better than Coumadin for two reasons: He doesn't have to eliminate vitamin K foods nor have his coagulant levels tested by blood draws at the hospital every two or three days.  (On a personal note, we refer to kissing as "vitamin K", so we really don't want to eliminate that!)  

What can others do for him?  Prayers are encouraged and greatly appreciated.   He perks up for the moment when we have visitors, so if you are thinking about visiting, but you don't know if he would be up for it, he says he would like it.  Phone calls would be a welcomed distraction too.  I am on the lookout for a card table that is just hanging around in someone's storage collecting dust (not one that is needed often) to borrow to set up a puzzle for him to work on.  He likes the puzzle at the cancer center waiting room because it temporarily distracts from the nauseous feeling.

Someone whose week it is to cheer him, gave him this today:

This is one picture, but I have posted it upside down for your convenience.

Final Day of Chemo?

Yesterday the radiation machine was down for repair during his appointment, so he quickly found someone to cover the classes he was going to teach in the afternoon.  He felt really grumpy and though he loved the Thai green curry soup and sweet and sour he requested, it didn't lift his dark cloud especially after our kids left and then last night he didn't sleep well.  Today is a long day of Chemo and could possibly be the last of it.  We will find out in 3 weeks. Just 8 more days of radiation.

 Jay gave him this t-shirt which he was happy to wear to the clinic to amuse the nurses.

He loves the hat my mom knitted for him.  It is soft on his tender head. He and I are so grateful for the many scout leaders who helped both Reece and Jay to complete their requirements last week to earn their Eagle Scout ranks in boy scouting.  Roland says he will be at the ceremony--he will wear a mask or whatever it takes.  He is so proud of them.

One More Day

These are a couple of partial tunes Roland sings about his situation.

To the tune of "One More Day" from Les Miserables:
"One more day of Chemo-therapy... We will nip it in the bud."

To the tune of "Alouette"
"Ra-di-a-tion, this is radiation. Radiation the game is really fun."

It has been a fun-filled weekend beginning with a visit from his dad and Donna.  They brought games and stories and a Soda Stream to make carbonated water for Roland and flavored soda for the kids.  Dad took him to the hospital Saturday morning for radiation and Chemo.  The IV worked.  Whew!  Then Saturday night Austin, Tikla and Tori came for a visit, so that has also been wonderful.  He has rekindled a love for the game of Rook.  He was able to play Scrabble with his Dad.  They both love that game.

So, how is he doing?  Well, surprisingly well.  He does have his bad days and even hours of the day when he just wants to be in bed in a semi comfortable position, but overall, he is doing well.  he has been eating well and gaining back the weight he lost.  He is going to substitute at work this week.  He only has one more day of Chemo (like the song above) and radiation until the end of the month.  We don't know if this is the end yet, but it could be.  :)

He hasn't been shaving his head nor his beard.  At first it was a little joke. (I am not a fan of facial hair)  He said he thinks he looks like a "tiger." Maybe he has read a little too much Calvin and Hobbes?  The unusual thing is that what is growing in is mostly white whisker hair and very fine and sparse white hair on his head.  He is turning into a dandelion puff.

Forecast is Sunny

The peripheral IV wasn"t working today, so the nurse had to find a new vein.  Roland really doesn't like this.  I asked about getting a PICC line like Kaitlyn had, but Roland's treatment time is so short that she couldn't justify it.  I guess we can be thankful for that.   In fact the oncologist is leaning against going two more rounds.  She is looking into the research and observing how well he is handling the Chemo so far.  She is amazed with how healthy he looks and that his side effects are so few.  She did caution us that sometimes the effects will kick in after treatment is complete. 

And Thus Begins Round Two

It was a long day at the Cancer Center.  The radiation doctor was impressed with how good his lungs sounded and his general demeanor.  He said he could expect that the little cough he has developed would get worse.  He coughs especially when he laughs a lot, so we have to make sure not to expose him to too much humor.   :)   

He got the only private room in the clinic again because no one else needed it.  In fact he was the only patient in the whole place!  It was hard to find a good vein.  The nurse explained that his body protects itself from getting Chemo by blocking the previously used veins.  Unfortunately, this was explained to us after she tried a vein that "wouldn't take."  Ouch.  She found a better one in his left arm. 

We meet with the oncologist tomorrow.  The nurse indicated that the doctor has been talking about how he might need to go another round.  I can hope he won't need to, but it is good to have some time to brace myself.

I got some lunch from the hospital cafeteria when he ordered his lunch so we could have a little date, but he was kind of out of it, so he said he really couldn't classify it as a date.  He enjoyed channel surfing when he could stay awake.  He told the nurse that he was thankful for Chemo.  She said, "You might need an appointment with a therapist!"  ;-)

He is home resting and not complaining much and not coughing.  I think it went well.

Making it Better

Roland's stomach has not been feeling well.  I am pretty sure this is normal and is related to his tender esophagus.  He asked for some ginger ale.  Ginger is supposed to be a great stomach settler.  I don't usually buy soda so I read the labels to see what I was getting for him.  One brand didn't even have any ginger in it the other had high fructose corn syrup as the second ingredient.  I got some S. Pelingrino and set out to make my own better-for-you ginger ale.  First I chopped up some ginger (that seemed like a good place to start) then I heated some water and honey and steeped the cheesecloth wrapped ginger in it.  This became the concentrate.  I put some crushed ice in a glass, added some concentrate and topped it off with the soda water.  I think it is a fine alternative and more importantly he likes it.  Now I am working on making my own better-for-you protein shake.

It has been a beautiful sunny day today so he has taken the opportunity to sit on the back porch  like a lizard to get a little color to his pale face and newly shaved head.

Holding On

It has been about two months since being discharged from the hospital. Lately, Roland has been doing about the same.   His work days were exhausting and he came home and just wanted to rest.  He loves it when the college kids come to visit as they did this weekend.  When we play games together he forgets his discomforts for a while.    He usually enjoys the distraction of visitors, but yesterday and especially today were not good.  He didn't want any food.  I played the guessing game, but didn't have many victories.  Anti-nausea medicine was the clear winning answer.    He would get cold easily.  I have been taking his temperature several times a day, but it hasn't gone above 99.  Reece's idea for cheering him this week was checking out several Calvin and Hobbes books from the library.  This did bring lots of laughter.  It was a great distraction.  I came into our room a few times when Roland was asleep and an opened book of these comics was on his tummy.  Our neighbor is a fabulous trumpet player.  He and his wife asked if they could visit.  I suggested that he bring his trumpet and play some uplifting tunes for Roland.  When they came, Roland didn't want to get out of bed, but of course he could hear the trumpet well from the bedroom.  :-)  It was beautiful.  Today it occurred to me that many of our family, friends, and neighbors have been figuratively running ahead on our adventure trail and planting flowers so they would be in bloom when we would reach that stretch of the path or laying stones into inspirational messages for us to read on the steeper rugged climbs.  We are so appreciative of these kind acts of compassion and thoughtfulness.

Connecting with His Inner Child

Today Roland went to work substituting for one of the ESL teachers at SUU.  When he came home his leg was more swollen.  He will be working tomorrow too.  He sent me these Photo-shopped images.  I think the first one is for his dad's amusement and the second one is for Euna. The last one is just gross. (Tori warning)  So now I know what he has been doing while keeping his leg elevated.

"Sometimes I wonder if I am reverting to a child."

Another Wanna-be?

'The kids say that I am finally looking a little like Gollum, but I
don't know.  Maybe it's the way I've started eating fish more.'

The Quest for the Perfect Hat

 While studying, Roland has shown me many images of Scythian artwork and stone engravings of the people depicting their clothing styles and armor.  So I shouldn't have been surprised when I asked him what kind of hat he would like and he said he wanted a Scythian cap.  "What does that look like?" I asked.  He said it was a little like Robin Hood, but when I showed him Robin Hood hats for sale, he made a scrunched up face which means, "That's not it."  After some research we found it was more like what is now referred to as a Phrygian hat, but he didn't want it made from felt or fleece. He wanted a hat that looked like what these people are wearing, but with a Robin Hood feel to it.  After all this is an adventure!
.

  Since I couldn't find what he wanted for sale, I decided to make one.  I had a skirt that I knew I would never wear made from a tan suede fabric.

I used the only hat pattern I own which happens to be a Vogue lady's hat from the 1950s, I think.  Thanks Mom.  I figured I would alter it and make it work.

I lined it with the same suede as the exterior.

It took a few revisions like adding a hat band and some feathers and lots of trying on.  Here is the final result.

 

It covers his bald head and he is really excited about the connection he has with the Scythians. Let the new adventures begin!

The Mohawk

I have cut Roland's hair since we first started dating.  I have always preferred it to be longer than he wanted it, so he would often ask me to cut it "as short as you can possibly stand it."  Tonight he started noticing hair on the keyboard of his laptop.  Then it started falling in clumps. I was not enthusiastic about cutting his hair short, but he was in such a fun mood about it and involved the kids.  Sterling was especially excited about styling it into a mohawk with gel. I tried to be a good sport, but needless to say it was much shorter than I could stand it. I was enjoying the "event-ness" of it, but then I started getting a little emotional.  If it weren't for the exuberance of the kids, I would have needed a time out to compose myself.  I saved the trimmings in an envelope.  I don't know why, but I figure I can always toss them later.  

Tori reminded me of this scripture: "The soul shall be restored to the body, and the body to the soul; yea, and every limb and joint shall be restored to its body; yea, even a hair of the head shall not be lost; but all things shall be restored to their proper and perfect frame." Alma 40:23

These ones are similar:"And not one hair, neither mote, shall be lost, for it is the workmanship of mine hand." Doctrine and Covenants 29:25

"But the very hairs of your head are all numbered." Matthew 10:30

"But there shall not an hair of your head perish."  Luke 21:18

"Let him trust in me and he shall not be confounded; and a hair of his head shall not fall to the ground unnoticed." Doctrine and Covenants 84:116

And then there is this one that makes you think,  hmmm?  Really? "But even the very hairs of your head are all numbered. Fear not therefore: ye are of more value than many sparrows."  Luke 12:77

And these two funny ones:"And the man whose hair is fallen off his head, he is bald; yet is he clean." Leviticus 13:40

"And he that hath his hair fallen off from the part of his head toward his face, he is forehead bald: yet is he clean."  Leviticus 13:41

And so now he is in the market for some hats.

Ready

So Serious

Warrior

Just for fun

Almost gone

Sharing hers

Wow!

Based on MariLou's comment below, I felt like I should add one more photo.

Casey Conner Wanna-be

Disguises Distractions Diversions

Roland would rather not eat or drink, so there are two tricks I use to combat this.  One is to make eating also part of our entertainment.   We have had more eating "dates" lately because of this.  The other is to bring it to him and present it so it looks as pretty as possible.  I like to give him drinks or smoothies in goblets and serve meals in red bowls and plates because warm colors are more appetizing.  It might not really matter, but it is something I can do and that is important to me in this adventure when so much is so out of my control. 

Friday night there was a nice surprise at the doorstep.  Someone had taken the time to prepare a special movie night for our family.  There was a movie (The Sorcerer's Appentice), movie popcorn,  and movie candy all packaged up so colorfully.  What touched us most was the card written with kind sentiments and encouragement.  What a thoughtful thing to do and since we don't know who to thank, we just feel thankful to everyone we see.

We have gotten to know our neighbors better this year.  One of these is a woman who recently lost her husband.  Our kids find her delightful because she laughs so much.  She has shared old time movies and eggs from her chickens with us.

Tori came for the weekend and brought Star Wars candy dispensers that make techno noises or Darth Vader breathing while dispensing. Someone left them in her apartment when they moved out.  She also brought lots of surprises from her roommate's gluten free bakery. She brought the card game Five Crowns which Roland learned from his Dad and Donna when he stayed with them.  Most of all she brings joy.  She loves being with us.  She helped Reece ask someone to Prom. She conducts PTIs (Personal Tori Interviews) with each sibling and makes each of us feel like we are the one she came to see.

All these diversions help distract him from the general crummy feeling he has most of the time.  I think his favorite is the research he has been doing.  Today it is Herodotus' history.

He is feeling well enough to substitute at the ESL program at SUU next week for a few hours.

We are going to try lavendar oil on Roland's feet tonight to see if it helps with restless leg syndrome.  Now, if anyone knows a remedy for ringing in the ears... we are *ahem* all ears.

Painting Adventure

To celebrated the end of week three of radiation Roland dusted off his oil paints and brushes and pulled out a very old painting of Lewis, Clark, and Twisted Hair at Canoe Camp that he started when we lived in Idaho.   He put on some painting clothes and drove a half a block to Del Parson's house to paint with him in his studio.  This is so good for him to be able to socialize and improve on a talent at the same time.  I imagine him sitting on the floor cross-legged (Del usually stands when he paints, and Roland does too, but he can't right now. ) with a pallet in one hand and a brush in the other surrounded by an assortment of photos for reference.  (When we lived in Idaho, he went to the actual location of this event and took photos of this place as well as of statues on the campus of Lewis-Clark State College reenacting the scene.)  Del gave Roland a few suggestions and then asked him to critique the painting he was working on which is of Jesus taking the hand of the woman caught in adultery lifting her up.  Roland gave his opinions and Del agreed! :-)  He came home very happy and promptly fell asleep.