Per usual...it's on INSTAGRAM (thebompie4)
if you want to take a peek at a few pictures of the day.
Kyle gained (GAINED!) a few more pounds.
Listen, at some point it will start to go down again so we
will take "gain" as long as we can.
Way to bulk up Kyle. We're proud of you for gaining!
(Listen how often does one get to hear THAT in their life?
Enjoy it while you can!)
(It could have something to do with all the treats
people kept bringing him.)
We had a constant flow of visitors and got in trouble from our
nurse.
We are only allowed two at a time and we bordered on 4
for most of the day.
They pulled me aside to gently remind me that 2 was the limit.
(The silly thing is that *I* count as a visitor--I mean,
really? come on? I am his wife. I am hardly a "visitor".
I am an attachment. An appendage. A permanent fixture.
In my opinion,
Anyway, we cannot tell you how much we TRULY love your support
and visits...it makes the day, literally, FLY by for Kyle.
We love that you sit and make us smile and laugh. That you
bring a treat, a lunch and a hug. We love all of you that
take the time out of YOUR days to make OUR day! We love sharing
stories and time and memories. It is the brightest part of
a long, hard day.
Nothing makes us happier!
From here on out, we will have to schedule "time slots" so
everyone that wants a visit can have one and no one will have
to be turned away.
For those of you that have our cells, please text or call
and we will let you know a good "visit time" that is not
overcrowded, or filled up.
PLEASE don't stop coming...it SERIOUSLY makes us SO HAPPY
to have a visit and see you.
NEXT CHEMO SESSION: Friday May 3 (We have a FRIDAY visit
next week).
That is the last day in this 9 week "round".
The following week we will do blood work for tumor makers,
PET Scans and Dr Sharma visits.
We will find out what this chemo is doing for Kyle's tumors.
I told Kyle yesterday I'm really nervous to get to that week.
It will tell us how he's responding to the chemo, for now.
We had a long talk with the Huntsman Social Worker yesterday
about terminal cancer and our feelings and dealing with
"the reality" vs "living in the moment and finding joy."
That one is a tough challenge for me folks!
I am a woman, and a worrier (possibly the two go hand in hand).
It's hard to know all the answers about the future, and there are a LOT of things to worry about when things go south, and then when things go more south.
We asked for advice on how to enjoy each day and try not to worry about the very real, very hard stuff, that will come into our
lives.
She said she sees this a lot and it's all still very new to us.
What she usually witnesses is a "shift" in people with terminal illness, almost a release, where they realize they no longer have control of what will happen, or when it will happen and so something in their brain "shifts" and they learn to JUST LIVE
each day.
I'm trying to get there. I'm trying to compartmentalize more.
I'm not very good at it. I don't want to look back and regret not being HERE and NOW and always worrying about WHAT and WHEN.
If any of you readers have any advice, I would LOVE to hear it.
How do we as people learn to "let go" of the future, and worry,
and needing all the answers NOW and just live FOR TODAY?
(It seems to against everything our Western culture teaches us!)
I would LOVE any suggestions ....I'm sure you're all brilliant!
HELP! That's what I've got for today!
I'm a big fan of affirmations, perhaps you could start to write your own list. Here are a few to get you started:
ReplyDeleteI am strong and capable of dealing with the challenges ahead.
I am present with my family today.
The resources I need will manifest when I need them.
The love of the people around me will lift me up.
I treasure each moment.
I live without fear.
Cheesy I know, but I believe it works. Write them everywhere, bathroom mirror, post it note on the fridge, on the dashboard of the car. Fill your life with reminders of how powerful you and Kyle both are.
When Ellie was little and I worried every second that she would die of SIDS - or choke on an apple, or anything else they traumatize you about with you new babies - I learned to sit outside her room and say "I am thankful for this beautiful day with Ellie." I still do it now when I worry about something horrible happening. And just saying "thank you for THIS beautiful day with my family" makes me feel okay about letting the worry about tomorrow go. It's like one of Heidi's affirmations. Saying it out loud is very meaningful.
ReplyDeleteDitto! Dorien I have been through some major challenges these past few years, as you know. Although most people don't know the details of them, I had to move past that first stage of SHOCK and panic and worry and get to a place where positive affirmations and realizing the things I do not have control over. I have witnessed the difference in people who continue to be negative about things they control and their health goes down hill. You can't afford that (as you saw from your bronchitis.) That doesn't mean you stay unrealistically strong - your kids need the truth and to know that you aren't unrealistic, but you all need to find JOY IN THE JOURNEY! That Journey can end for any one of us at any time. You just have more definitive information. You are being such a fabulous support to Kyle and your children - and to all of us. If we can help you stay strong, it will be a joy to do something in return. Call anytime and I can tell you some things I've done. But the positive affirmations (even though I laugh at mine sometimes) really do help!!!!
ReplyDeleteLook to this day
ReplyDeletefor it is life
the very life of life.
In it's brief course lie all the realities and truths of existence.
The joy of growth.
The splendor of action.
The glory of power.
For yesterday is only a memory
and tomorrow is only a vision.
But today well lived makes every yesterday a memory of happiness and every tomorrow a vision of hope.
Look well, therefore, to this day.
Ancient Sanskrit - author unknown.
ReplyDeleteThank you matthew thornton (i don't know who you are) but that is truly beautiful!
ReplyDeletedorien