Monday, August 25, 2014

Highs and Lows

Fortunately, it's been mostly highs in our lives these last weeks.

The good things are that Mike has finished his first cycle of chemo and done so well we can't believe it.  I think this weekend has been the hardest yet though.  He takes steroids the night before and the morning of the chemo, and they give him pre-meds, including steroids, right before they start the chemo meds.  So for the first few days afterwards, he's usually feeling pretty happy and enthusiastic about everything.  We won't go into the day he almost bought a house up here on a steroid high.

And the lows are not related so much to this illness as the fact that we want to live in WA more than anything and are tied to Montgomery because of Mama.  She can't or won't move with us, and there is nowhere else for her besides a nursing home, and she's not disabled or sick or anything.  We never intended to live in Alabama, but things just worked out that way.  It's not our home, and we don't really feel at home there, but we have an obligation to give her a home.

We go over and over the possibilities and reject them and start over.  It's just a time when we have to stop micro-managing everything and let God tell us what we should do.  As bad as this situation with cancer is, we have to be thankful that it's allowed us this chance to have these months where we want to be.

It would take pages and pages to describe the joy Graysen gives us.  She has changed just in the two weeks plus I've been here, and I told her tonight when we were rocking that I didn't know how I was going to be able to leave Tuesday.  We have a little routine for going to sleep that is so precious.  At the beach when I put her down for a nap or bedtime, I would read a couple of books (quickly because she wasn't interested) and put her in her bed to usually cry and yell a little bit.  It's different with Emily and Ryan because they already have their bedtime routines, but I love figuring out what makes us both happy.

We first start talking about going to sleep and talking about which books we're going to read.  At night I turn on her closet light and the white noise machine, and we settle down for story time with one of her blankets.  She is insatiable when it comes to stories and would listen to and look at 20 books if I didn't mention sleeping.  Once I say something like, "Time to rock with Mimi," she turns around and puts her arms around my neck and closes her eyes and I rock her for a few minutes.  And of course talk nonsense to her.  Then it's just a matter it putting her in her crib and tucking her in.  She snuggles down so sweetly, and that's it.  So much easier on my heart than hearing her cry.

Emily and Ryan went fishing late this afternoon, so we watched her play so nicely downstairs and then fed her supper.  I was washing the dishes when I heard this little voice behind me saying, "Peeee, peeee."  I turned around, and she was holding out a package of the little baby cookies called Mums or something like that.  She had found them in her diaper bag and was sweetly asking if she could have them (please).  Her parents have her sit on the floor for snacks or in her chair, so she plopped right down and said, "Peeee," again.  No way I could resist that.  She crossed her legs and sat there happily munching them and even said thank you when I gave her the second one - or a-ou.  It's amazing how much she understands even though she can't communicate it all to us.

She also has a displeased set of actions that unfortunately makes us laugh, although we try hard not to.  I've tried to capture it with the camera but failed.  She wrinkles her brows and narrows her eyes and puts her finger up in front of her face in a warning.  She does it so seriously.  Tonight she was about to drop some cheese on the floor for the dog, and I said not to, and I really got what I call the thundercloud look.  The word "no" in any form will do it too.

I have to stop typing and go to bed.  I have a few pictures from this week, some from the clinic and some taken here.  Nothing special but just a slice of our lives this week.

The usual look when he sees the camera.

We did get a cubicle this time, so it's a good thing Emily wasn't with us.  A funny thing happened behind that curtain.  There is no privacy, so everything that is said is heard by everyone, although you try not to hear.  At some point, the lady there was talking to her nurse, and we heard her mention Alabama.  There is always some mention of Alabama while we're there, and the nurse Friday said that they had a travelling tech or nurse from Alabama and ran off to get him.  He came and introduced himself and said, "Matt Smith from Hot Springs, Arkansas, but close enough."

So being the introvert he is, Mike waited about 20 seconds before starting to talk to the lady on the other side of the curtain about where she was from:  "Not being nosy or anything....."  She joined right in and said that she lived in WA, but her husband had died, and she was moving to Birmingham to live near her sister.  Small world.  Mike explained our situation to her, and she asked if the female she heard was his daughter.  He said, "No, it's my elderly wife."  She came right back with, "I heard you give your birth date to the nurse, so I know how old YOU are."  Such a sweet lady.  She came by and visited after she finished her treatment and made me wish we could run into her again.  I only know her first name and that she's moving to Homewood.

Since the space was so small and the day was so beautiful, I took my lunch and went out on the 3rd floor terrace to make some phone calls.  Lovely.  Although it was sunny, there was the smallest hint of a cool breeze to make it pleasant.




The visit was a good one.  He had lost a pound and had low white counts, so he got a booster shot of Neulasta to build up the white blood cells.  Other than that, Dr. Kaplan was pleased with his progress so far.  He has a 2 week break before starting the 2nd cycle on Sept 5th.  I'm not sure when I'll come back.  I guess we'll see how he does that first time and overall.  There is more tiredness this week than last and again the headache and heartburn.  I guess it's to be expected, but maybe these 2 weeks will get him back to feeling good.

Emily and Ryan were able to spend a couple of days at a cabin by a lake with some friends (I forgot to find out the name).  So beautiful, and they had a great time.  Some pictures Emily texted us.








Alan and Kathy sent up some Alabama peanuts which were promptly boiled and taken to the lake.  This was Graysen's first taste.  The clapping is her signing "More!"



Tomorrow is my last day here for awhile, so I need to make the most of it.  Flying home won't be as nice as flying here, I have a feeling.

Monday, August 18, 2014

I'm not sure where this week went


Emily worked Tuesday, Wednesday, and Thursday, and we got to keep Graysen on Wednesday.  We had plans to take her downtown to the library for toddler story time, and we were there waiting when we noticed that people were reading a sign on the door that said story time was cancelled.  Not to waste a good experience, we, and many others, went on in and let the children play or pull books off the shelf or, in Graysen's case, just stand and observe everything closely.  It was a little new to her, but I think next time she will be comfortable listening to the story and playing with the others.  She WAS the cutest one though, I have to admit, although Emily laughed at my choice of clothing.  I had on a favorite yellow playsuit and green sandals, but the hooded sweatshirt she had to wear because of 60-something-degree weather and rain kind of ruined the effect.  The only one there with bare legs,   After we left, we walked around half a block and came back.  She held my hand so sweetly and enjoyed looking around at new things.  A man in a store window waved at her, and he got "the look."  Later on after her nap, we took her to the grocery store.  We all enjoyed that.  We were just getting a few things, including milk, and when G saw the milk carton with a cow on it, she said, "Moooo."  Grandparents are thrilled over the smallest things, but it did make us laugh.

Friday was the trip to Seattle to the cancer center.  It was sooo much better this time.  We went first to get labs drawn, which was so easy with a port.

At this point, Mike had not yet realized that he left home without his crossword puzzles and his book.


This is what it looked like when he realized it.

Our visit with Dr Kaplan and Stephanie, his nurse, was great.  His labs were perfect, and he had lost only 1 pound and that probably from eating healthier and not from loss of appetite - although there was a little bit of that during the week.  The doctor was well pleased with his good symptom-free week and gave some advice on what to do if and when certain things happen.  He and Mike ended up having a history discussion, and he told Mike a good joke that he can't wait to deliver himself.

The next visit was to the treatment room.  We didn't get a private room, of course, but he did have the one with the best view - the garden room.  
Since there were so few patients, Emily and I could stay there comfortably with him, which may not always be the case.  Once again, the nurses were friendly and competent, and it was just a pleasant afternoon.  He was able to get his lunch - a turkey sandwich, orange, and cookie - and an egg custard to top it off, so it couldn't have been better for him.  Except maybe not to be there at all!


Emily found a trivia app on her phone that kept them entertained for much of the time.


Just a good picture of Emily being able to relax a tiny bit with everything going so well.


I just cannot remember what we did one day ago without writing it down.  We did get out and ride around North Bend yesterday, and that was interesting and nice to just get out for pleasure.

This morning, Mike and Ryan went to see about buying a boat, and Emily, Graysen, and I were going to church.  We got all dressed and were ready for the 9:30 service, but when we got there, there were no cars and a notice on the door that services were going to be held at a nearby park - at 10:30 - for some anniversary.  They are new to this church and don't really know anyone yet, so we just came home and enjoyed a short walk with Graysen in her wagon.

Blackberries are everywhere along our route, and sometimes we will pick one, but they're a little hard to get to.  This time, I was able to get a handful.  Emily washed one for Graysen, and she gobbled it up and wanted more.  She was eating them as fast as we could pick them.  

We managed to get home with a few which she finished up.







This is truly the sweetest baby - or little girl.  She is learning so much every day it just amazes us.  I get to pretty much spend as much time as I want to with her, and this afternoon we stayed in Mimi's Room for a couple of hours.  I let her look at a few videos on my computer, and she is obsessed with "Wheels on the Bus" and "Itsy Bitsy Spider."    I limit it to one session a day, but that doesn't stop her from pointing to my computer and moving her head around and saying "Bus."  We read books and played in her tunnel, but the most fun was playing on the bed and reading under the comforter.  She will now give me kisses and cuddle, and I feel like the luckiest person in the world.  







I see the Parmesan Chicken picture on my screen, which is what we made last night.  Delicious!  One of those simple recipes that never fail.


Mike continues to feel pretty good.  He is not sleeping as much as he would like but seems to have plenty of energy.  Just praying it stays this way.  We know how lucky we are to be spending these treatment days in a place where he is happy and content.  Ryan tapes Jeopardy every day, and we gather after Graysen goes to sleep to play.  Or rather, I kind of listen and toss out an answer once in awhile.  

Tomorrow Emily is off, and I'm not sure what we'll do.  It's time for us to have a girls' day since the guys have been having so much fun fishing.  Tomorrow is Ryan's birthday, and Tuesday is Mike's.  Guess we'll be partying all week.  

Tuesday, August 12, 2014

Busy Monday

I see now why I need to write every day because big chunks of yesterday are missing from my memory.  I do know it was one of the best days we've spent with Graysen - from the time I got her out of bed at 6:15 until her parents got home at the end of the day.

She was talking and pointing as soon as I opened the door to her room and was content to just stand in her bed and jabber and exclaim over things.  Opening the blinds to let in some light was just so exciting for her.

Our favorite thing to do is sit in the den and listen to and watch her play.  She does play by herself well, just picking up things and talking to them and sometimes naming them, or running through the house with any of her cars or rolling things.

Stair-climbing for her is so much fun to watch.  And so nice that I no longer have to carry her up and down.  She goes up very methodically and rapidly, enjoying it so much, but then going down, she starts a few feet away from the first step and backs into it.  Then she starts slithering like an eel and sliding until she reaches the landing.  She gives a self-satisfied little exclamation and does the whole thing over again.  When she reaches the bottom, she gives the gate a firm push until it latches.  I have to admit it took me a couple of days until I was comfortable watching this - and may still need to lurk behind her all the time.






The sailboat dress I made is a little bit too big right now, but she looks sweet in it.  I'll definitely use that pattern again.

Mike was feeling good yesterday - not wonderful - but well enough to spend a lot of time playing and reading, and we even walked across the street to the park late in the afternoon.  I've never been in WA in 99-degree weather, but it was almost like being home.  Even the tree-canopied trail behind the park was not cool like it usually is.


This picture is eerie to me.  Kind of like an abandoned (glowing) baby.  We love the ferns and the coolness.

This is just mean.  Mike's idea of a funny thing.  He is constantly pointing out bear nests and trampled down places and asking what I would do if a bobcat came out of the woods.


Emily and I took her over to the park and let her run in the grass.  They're rebuilding the playground, and we can't wait until that's finished.  In the meantime, a bottle of bubble stuff and some boys playing Frisbee are enough entertainment.








Adding new pictures from today.

Crossing the street with Daddy to check out the future park.

 

 Someone looks guilty, but I'm not sure why.  They wouldn't want it if it didn't pertain to fishing.


Another pensive pose, just waiting for the other kids.


We had a list of chemo side-effects that we refer to, and a headache was one of them to call the doctor for, and I did but was reassured that it would be okay to take something for it.  There was a little heartburn that Emily picked up some Omeprazole for.  I think today the headache is still there a little, but the heartburn is gone.  We're so lucky he hasn't had any of the other ones except being very tired and sleepy - which is fine and expected.

I'm still managing to keep up with work when Graysen is asleep and today when she is at the babysitter's.  We would love to keep her all the time, but they need to keep their babysitter so have to take G over there some.  I have to admit it is nice to have a little break, but I miss her today.



Ryan went off to meet some people, so Mike and I walked to town to the UPS store to mail a package.  It looked a little rainy, and we were sure it was going to start raining on us.  We walked at a pretty good pace and made it and made it back too.  I loved the wind and clouds.  So much nicer than the hot sun.  We had thunder and lightning last night too, a rarity up here, which thrilled Emily and me.