Questions. Part Three. 3.
(Sorry missed the last in the series that was asked
yesterday)
6) Kyle- do you ever dare to hope that you can beat the odds? What keeps you so positive? Where do you draw your strength from? Do your guy friends do a good job of just hanging out with you doing typical guy stuff or have your friends jumped ship not knowing how to "be" around you?
*Have people drawn closer to the two of you since getting Kyle's diagnosis? Have any of them pulled away instead?
*What were your first thoughts/emotions when the two of you were told about the cancer?
-How has this 'journey' (fighting the cancer and being a support) changed your perspective on life?
-What would you tell someone who just found out they are in the same situation as your family?
-Besides support, love, comfort and prayers etc., what more do you need from any and all
of us?
-------------------------------------------------------------------------------------------------------
Answers
6. With Cholangiocarcinoma there seem to be no odds to beat.
Now I know people get down and say we're being negative
when we say that, but those are the facts with this cancer.
Longest "survivor" out there (that we've found) was a
Stage 1 or 2 that had a COMPLETE liver transplant. The
cancer had NOT spread anywhere else. She's 10 yrs. down
the road and the cancer STILL came back, it's everywhere.
This cancer doesn't seem to EVER go away quietly.
Stage 4, now that's some bad stuff.
It's "out of the house" as I explained in my Cancer 101
post way back when. It's already in Kyle's blood
floating around, looking for new places to grow. It has
already landed in his lungs. It is already in his lymph
nodes.
Does that mean he will die tomorrow? NO! (hopefully
not which could involve being hit by a truck or some
other thing).
But our very long answer is NO. We don't think there is
an alternate ending to this scenario. But that also
doesn't mean we aren't going to fight with EVERY ounce
of energy and gumption to make his life as long as is
possibly possible right now.
If you don't know me in person, I am a stubborn pain in
the arse. There is NO WAY I will go down without a fight
for my husbands life. Nor will he.
I think sometimes people CONFUSE
"accepting reality" with "giving up".
They are NOT the same thing. Not the
same thing at all.
NO ONE in this house is giving up without a fight like
you've never seen.
NO ONE! (Take THAT Cholangiocarcinoma).
Kyle is just a positive person. He is hopeful and
believes in the power of positive thinking (not to cure
him, but to help him through).
We draw our strength (right now) mostly from each other,
our family, friends, and even complete strangers.
We believe also that the power of prayers/good thoughts/
energy (however you want to term it)--is helping us through
as well. We pray not for a miracle, or a cure...we pray
for strength and courage to make it through.
If either of those, a miracle or a cure came, would we
take it? Um yup! That goes without saying. That simply
goes without saying.
-----------------------------------------------------------
*People pulling away and people staying...I touched on this
a little yesterday.
Yes, people have done both.
People that we thought would be around non stop, have not been.
People that we never would have guessed would be around,
have been.
And some people have been exactly how we thought they would be.
Imagine that?!
This is common in so many things I've read and heard.
About terminal cancer.
Facing mortality is hard. Some people cannot do it, it
is just too hard.
WE don't have a choice, but people that know us DO.
Have a choice.
Here's the thing.
We don't fault ANYONE for how they act and react.
We get how hard this is.
(Believe me, we GET IT! If we could trade THIS "hard thing" for just about ANYTHING else? We would. Possibly ANYTHING else.
Kyle and I always laugh (manically and hysterically) when people
throw out the old "Well, if you knew what someone else's trials
were, you wouldn't trade them for your own!"
Snort! HA HA HA HA! Choke! giggle...all in a "ya, that's NOT
funny kind of way!" This one folks??? HANDS DOWN we would trade it with someone else for something else. HANDS DOWN and blindfolded!)
Life is also busy. People are busy.
We bear no ill will, contrary to sometimes differing opinions,
if you are not here, cannot be here, and don't want to be here.
We just always say that for those who love Kyle and those
who care--we don't want you to have any regrets that you
didn't make time, or a memory.
That is the ONLY reason for us...in a weird and odd and
caring way FOR YOU. We don't want YOU to miss out... that is
the truth in our heart of hearts.
Time ticks, it keeps ticking and someday TIME will be gone.
Kyle always says he feels strongly that different people
will step in when they are needed.
So far this has been the case 100%.
Has it always been who WE thought it would be?
Nope.
But someone has ALWAYS been there when we've needed them.
Thank you to ALL of those people.
You are going directly to heaven.
You don't have to stop at GO. Or collect blessings or
repent of your sins.
Free Passes for all!
No seriously. I've worked it out with God. We're tight,
me and the Big Guy.
ANYONE who is kind to ANYONE who has cancer in this life--
they're going straight to the right place. Just count on it.
----------------------------------------------------------
First thoughts when we found out Kyle's diagnosis?
Devastation. Heartache. Sadness. Shock. Tears.
Weeping. Sad. Sad. Sad. Shock. Sad. Sad. Sad....
Does that cover it? LOL
Has this changed our perspective on life?
Yes! A thousand times yes!
How could it not.
It SHARPLY puts into focus what really really really really
matters.
It's not money, or fame, or power, or wealth or success.
It's family. And love. And time. And memories. And making them.
Period.
That is all. (For us)
Those are the basic things, the most important things in life.
The things we ALL know, and loose focus on everyday because
life gets in the way.
Cancer, of the terminal variety, clears the air of ALL
things that don't really matter.
Boy oh boy, there are A LOT of things that don't matter in
this life that we spend WAY too much time worrying about.
What would we tell someone else with this diagnosis?
Do it YOUR way!
Don't let anyone tell you what the "right way" to do this is.
Each person facing this, has an individual journey.
There is NO right way or wrong way.
Be patient.
Feel. Talk. Love. Talk some more.
Work through all the feelings.
Surround yourself by people who love you and support you
and LET YOU express your feelings.
Hold hands. Smell the flowers. Live each day. Cry if you
need to. (Who cares, right?) Get up when you think you
can't. Stay in bed and cry for a day if you need to.
Cling to the things that matter. Go easy on yourself.
Give yourself a break. Smile. Laugh. Love. Get off work
early and go to a movie. Lay on the couch with your kids
and watch TV in the middle of a Saturday when you should be cleaning. The dirty house can wait. Eat ice cream.
Enjoy a sunset. Pet your dog. Tell bad jokes about Moodles.
It's ALL about the little stuff now.
What do we need from people besides prayers, love comfort, etc?
Nothing, honestly. THAT IS WHAT WE NEED!!
Love.
Support.
Love.
Support.
Mostly JUST LOVE.
And not in a benign "they already probably know" kind of way.
Like I mentioned yesterday...tell us.
Tell Kyle. Tell me. Tell the kids.
We love you.
We're thinking about you.
Nothing big.
Doesn't have to be fancy or expensive.
(remember the text thing?)
Texts are brilliant!
Just love us ....it gives us (or helps anyway)
the strength to keep moving forward. It helps us
carry this heavy load.
Those are my answers for today!!!
Thursday, July 18, 2013
Wednesday, July 17, 2013
Answers. Post Two.
Question(s).
Set Two.
1) Kyle- have you ever thought of video taping speeches for your children for all the milestones that you might miss? 2) Are you two mad at God 3) Are you seeking any alternative methods in addition to chemo such as raw foods, juicing and gershon method, macrobiotic, etc? If not, why? (this is just to start)
4) Does it bother you when people seem to avoid the obvious elephant in the room and have you given the elephant a name yet? (LOL)
5) How are the KIDS doing? What are you doing to address their needs? What can we as friends do for your kids now and later?
-------------------------------------------------------------
Answers:
1. Yes, he (we) have thought about video taping Kyle. We haven't gotten around to it yet. (We should, it's really stupid we haven't). We have video taped Kyle just answering some
"fun" random questions about his life, growing up, meeting his
wife (that would be me) :) and a few other things. Not enough
video--I'm thinking in this day of technology it will be a
HUGE regret if we don't do more of this.
GOAL: make more important video messages. NO REGRETS! :)
2. Mad at God?? Nope, not at all. We think that this cancer
and God really don't have anything to do with each other.
God did NOT "give" Kyle cancer. We happen to live in a fallen
world, with mortal bodies--this body just happened to get
cancer, that happens to be terminal.
Are we mad that it happened? I would say much more DEEPLY
sad, oh so sad...but mad at God? Definitely not.
(These are OUR opinions--others that we know, that are close
to us, that are our friends and associates, believe
differently (ie. God DID "give" Kyle cancer)....we just
will always agree to disagree on this point. And someday when
we meet (or don't meet) God, he can give us the real scoop.
Until then, there is really no 2nd guessing what has already
happened. Wish it DIDN'T happen, but it happened.
This podcast (which I have OVER advertised) with the Rabbi
Harold Kushner (of "Why Bad Things Happen to Good People" fame)
explains PERFECTLY our views about God/Us/Bad Things....
Give it a listen:
http://radiowest.kuer.org/post/why-book-job
3. Seeking alternative methods? No. Here is a link
that perfectly explains why not. It's the best answer we
have. Kyle has tried to eat healthy and take care of himself
in ADDITION to everything else, but we won't take extreme
measures. There is a lot of "evidence" but the "evidence"
is not compelling enough to quit conventional medicine, which
we feel is our best option. I know not everyone will agree
with us. In fact we have a friend that did this (one of
the alternative methods)...for 6 weeks he amazed Doctors...and then well, his cancer came back with a vengeance. Please read the article...this woman (who is much smarter than me) articulates VERY well how us "real life" cancer patients feel.
Here's the link (I did a previous blog post on this as well).
http://www.huffingtonpost.com/joannamontgomery/keep-your-cures-off-my-cancer_b_3346767.html?utm_hp_ref=generation-why
4. The elephant in the room...Ah! Such a great question.
YES! It pisses us off, it makes us sad, its pretty silly
that people ignore the elephant (who's name is #*(@&(*#(--
insert your favorite swear word here and that's his name!)
As we've said before (over and over) we/Kyle does NOT want to
be the center of attention because of this...
BUT, if you're going to ask how so and so's test was, or
so and so's job is going, or ask EVERYONE else in the room
how THEIR life is...ask us too! Pretty silly to ignore the
obvious. Remember this is OUR "new normal"...it won't
go away by not talking about it.
Just say, "Hey how was chemo last week?" "How are you
feeling Kyle?" Any old question will do...but PLEASE
don't pretend the cancer isn't there. (See last post--it's
ALWAYS there)--by NOT acknowledging it, it's almost
insulting to us.
One quick question, one quick answer--just let us know
you care. That's all it takes. Easy easy easy. (Oh we
know its hard hard hard for people to ask--it's a HUGE
reach out of "comfort zones"--but do it--it will make
a HUGE difference and let Kyle know you care!)
5. I answered some questions about the kids yesterday,
but this more specifically asks what people can do,
now and later.
Kyle and I were recently talking about this. It's a fine line
for the kids, who don't just want to talk about their dad
and cancer...and YET...they DO want to know people care.
We've pulled extra tight and close as a family and in some
ways have pulled farther away from people--BUT, the kids
also need to know they are loved and people care about them.
Some of the kids lost friends after the diagnosis (Yup, it's
true)--it was too hard for the friends to know what to do/say,
so (oh so sadly) they left.
That was hard and hurtful. But we try and look and see
where other people are coming from. We GET it's hard.
It just is.
We ALSO (us, the grown ups) have had people pull away from us
that we thought would be here for the long haul.
In both instances, people who we/the kids thought would
be around, left... but other (wonderful, shocking and even
amazing people) have stepped in. People we would've never
guessed in a million years would help us down this road.
I have read that this in a common phenomenon with a terminal
diagnosis. Some people leave (it's too much) and some people
you never expected to be there, step up to the plate in a
big way. It happens all the time. So we are apparently
right in "the norm".
We would say for the kids...
1. ASK how they are. (it's that darn talking thing again).
WHY is talking so hard? (It just is apparently).
2. Don't pretend their dad doesn't have cancer. It will
not make it go away.
3. Be there! Don't just wait--DO something. Let them
KNOW you care. Call. Text. Send a card. I think people
THINK "something" has to be huge, it does NOT--even for us--
Seriously a text? It goes a long way to say "I'm thinking
of you. I care." A long long long way.
4. Be there to help when things go south. They will need
people to bear them up and help them through. We all will.
Again, in talking to Kyle's brother the other day (Sorry you're getting so much blog time Uncle Bud--hope you don't mind)...he
ASKED (again, had the decency to ask) "What it is Kyle needs right now?" (I would add me and the kids into the mix as well).
WHAT WE NEED.
RIGHT NOW. is emotional support.
Physically, since things are going well, we have all our
"bases covered" so to speak. Our lives are running at 90% of
normal--heck even when we had our "old normal"?? 90% is great!
But we STILL need people to check in and ask and love and
support that way. (See yesterdays post about the "burden" of
cancer that WE never walk away from and everyone else can/does).
HOW? does one do this?
Seriously, it does NOT have to be a big thing.
Little things are the best.
They're easy for YOU. Easy for us.
Text.
Call.
Email.
Drop a note. (Thanks Libbi!)
Ask how we're doing.
Give us a hug when you see us.
Give the kids a hug.
Don't ignore us.
Don't pretend we don't have cancer.
Don't make it a big deal, just do it.
And that's what I've got for today!
A few more answers to a few more questions.
Thanks for all the great questions!
Set Two.
1) Kyle- have you ever thought of video taping speeches for your children for all the milestones that you might miss? 2) Are you two mad at God 3) Are you seeking any alternative methods in addition to chemo such as raw foods, juicing and gershon method, macrobiotic, etc? If not, why? (this is just to start)
4) Does it bother you when people seem to avoid the obvious elephant in the room and have you given the elephant a name yet? (LOL)
5) How are the KIDS doing? What are you doing to address their needs? What can we as friends do for your kids now and later?
-------------------------------------------------------------
Answers:
1. Yes, he (we) have thought about video taping Kyle. We haven't gotten around to it yet. (We should, it's really stupid we haven't). We have video taped Kyle just answering some
"fun" random questions about his life, growing up, meeting his
wife (that would be me) :) and a few other things. Not enough
video--I'm thinking in this day of technology it will be a
HUGE regret if we don't do more of this.
GOAL: make more important video messages. NO REGRETS! :)
2. Mad at God?? Nope, not at all. We think that this cancer
and God really don't have anything to do with each other.
God did NOT "give" Kyle cancer. We happen to live in a fallen
world, with mortal bodies--this body just happened to get
cancer, that happens to be terminal.
Are we mad that it happened? I would say much more DEEPLY
sad, oh so sad...but mad at God? Definitely not.
(These are OUR opinions--others that we know, that are close
to us, that are our friends and associates, believe
differently (ie. God DID "give" Kyle cancer)....we just
will always agree to disagree on this point. And someday when
we meet (or don't meet) God, he can give us the real scoop.
Until then, there is really no 2nd guessing what has already
happened. Wish it DIDN'T happen, but it happened.
This podcast (which I have OVER advertised) with the Rabbi
Harold Kushner (of "Why Bad Things Happen to Good People" fame)
explains PERFECTLY our views about God/Us/Bad Things....
Give it a listen:
http://radiowest.kuer.org/post/why-book-job
3. Seeking alternative methods? No. Here is a link
that perfectly explains why not. It's the best answer we
have. Kyle has tried to eat healthy and take care of himself
in ADDITION to everything else, but we won't take extreme
measures. There is a lot of "evidence" but the "evidence"
is not compelling enough to quit conventional medicine, which
we feel is our best option. I know not everyone will agree
with us. In fact we have a friend that did this (one of
the alternative methods)...for 6 weeks he amazed Doctors...and then well, his cancer came back with a vengeance. Please read the article...this woman (who is much smarter than me) articulates VERY well how us "real life" cancer patients feel.
Here's the link (I did a previous blog post on this as well).
http://www.huffingtonpost.com/joannamontgomery/keep-your-cures-off-my-cancer_b_3346767.html?utm_hp_ref=generation-why
4. The elephant in the room...Ah! Such a great question.
YES! It pisses us off, it makes us sad, its pretty silly
that people ignore the elephant (who's name is #*(@&(*#(--
insert your favorite swear word here and that's his name!)
As we've said before (over and over) we/Kyle does NOT want to
be the center of attention because of this...
BUT, if you're going to ask how so and so's test was, or
so and so's job is going, or ask EVERYONE else in the room
how THEIR life is...ask us too! Pretty silly to ignore the
obvious. Remember this is OUR "new normal"...it won't
go away by not talking about it.
Just say, "Hey how was chemo last week?" "How are you
feeling Kyle?" Any old question will do...but PLEASE
don't pretend the cancer isn't there. (See last post--it's
ALWAYS there)--by NOT acknowledging it, it's almost
insulting to us.
One quick question, one quick answer--just let us know
you care. That's all it takes. Easy easy easy. (Oh we
know its hard hard hard for people to ask--it's a HUGE
reach out of "comfort zones"--but do it--it will make
a HUGE difference and let Kyle know you care!)
5. I answered some questions about the kids yesterday,
but this more specifically asks what people can do,
now and later.
Kyle and I were recently talking about this. It's a fine line
for the kids, who don't just want to talk about their dad
and cancer...and YET...they DO want to know people care.
We've pulled extra tight and close as a family and in some
ways have pulled farther away from people--BUT, the kids
also need to know they are loved and people care about them.
Some of the kids lost friends after the diagnosis (Yup, it's
true)--it was too hard for the friends to know what to do/say,
so (oh so sadly) they left.
That was hard and hurtful. But we try and look and see
where other people are coming from. We GET it's hard.
It just is.
We ALSO (us, the grown ups) have had people pull away from us
that we thought would be here for the long haul.
In both instances, people who we/the kids thought would
be around, left... but other (wonderful, shocking and even
amazing people) have stepped in. People we would've never
guessed in a million years would help us down this road.
I have read that this in a common phenomenon with a terminal
diagnosis. Some people leave (it's too much) and some people
you never expected to be there, step up to the plate in a
big way. It happens all the time. So we are apparently
right in "the norm".
We would say for the kids...
1. ASK how they are. (it's that darn talking thing again).
WHY is talking so hard? (It just is apparently).
2. Don't pretend their dad doesn't have cancer. It will
not make it go away.
3. Be there! Don't just wait--DO something. Let them
KNOW you care. Call. Text. Send a card. I think people
THINK "something" has to be huge, it does NOT--even for us--
Seriously a text? It goes a long way to say "I'm thinking
of you. I care." A long long long way.
4. Be there to help when things go south. They will need
people to bear them up and help them through. We all will.
Again, in talking to Kyle's brother the other day (Sorry you're getting so much blog time Uncle Bud--hope you don't mind)...he
ASKED (again, had the decency to ask) "What it is Kyle needs right now?" (I would add me and the kids into the mix as well).
WHAT WE NEED.
RIGHT NOW. is emotional support.
Physically, since things are going well, we have all our
"bases covered" so to speak. Our lives are running at 90% of
normal--heck even when we had our "old normal"?? 90% is great!
But we STILL need people to check in and ask and love and
support that way. (See yesterdays post about the "burden" of
cancer that WE never walk away from and everyone else can/does).
HOW? does one do this?
Seriously, it does NOT have to be a big thing.
Little things are the best.
They're easy for YOU. Easy for us.
Text.
Call.
Email.
Drop a note. (Thanks Libbi!)
Ask how we're doing.
Give us a hug when you see us.
Give the kids a hug.
Don't ignore us.
Don't pretend we don't have cancer.
Don't make it a big deal, just do it.
And that's what I've got for today!
A few more answers to a few more questions.
Thanks for all the great questions!
Tuesday, July 16, 2013
Answers. Post One.
We've had a lot of questions.
I will try and answer them.
No one asked here, but lots of people asked on Facebook.
Here is question #1, and the answer.
1. What physical symptoms is Kyle experiencing now that chemo is in full swing? Is he still working? What have the kids dealt with emotionally? Is there a book to help them (that sounds condescending I think, how does anything HELP)? Counseling? Are you getting enough "couple" time together in addition to the family time?
Answer:
Kyle's cancer symptoms have pretty much all gone away at the moment. (the fatigue, vomiting, coughing, fevers and pains)
Chemo has been a HUGE help to him feeling good again.
He is taken the chemo VERY WELL so far and after about one month
he actually felt back to about 80-90% of normal depending on the day.
Chemo is pretty well regimented these days and goes a LONG way to stave off nausea and other side effects. People are not immune
to bad side effects however, it is just that each person responds
differently to the chemo. And each person, and cancer, gets
a different regiment of chemo as well.
His main side effects from chemo are a hot red face the day after (this is from the steroids they give him to help him tolerate
chemo) and exhaustion. He's pretty tired (some rounds worse than others) and takes a nap or three in the 2-3 days following chemo.
He has had ZERO nausea or sickness from chemo.
This is a REALLY great thing!
-------------------------------------------------------------
Yes, Kyle is still working. Full time. With cancer and all
the other stresses of life. If you know Kyle in person, you know why. He will not quit until the time comes when he cannot
physically get out of bed and go. He would MUCH rather be
doing SOMETHING, than nothing. And he says it helps take his
mind off of things.
He also still folds laundry and cleans bathrooms and has enough
energy to mow the lawn again.
------------------------------------------------------------
The kids are all dealing with this VERY differently. As you can only imagine, there were MANY tears shed upon telling them the news. Devastating is the word we ALL felt. Keenly.
As Josh, our 19 year old son said, "Who wants to hear their dad
has terminal cancer?"
Josh tends to be more realistic about things. And his attitude is "My dad is still here, I don't need to be sad until he's gone."
Which in some ways is really great.
Grace (16) and Eliza (13) ADORE their father (not that Josh and Olivia don't adore him), but they have a special bond with their
daddy.
Grace snuggles a little longer and hoovers a little closer.
Eliza is 13 and it is just hard being 13, right?
Add THIS on top of 13 and what do you get?
A LOT of emotion that she doesn't know how to feel/deal with/process, and a lot of emotion. Period.
Swirling around in the space of our home, manifesting in many
ways. All understandable.
Olivia is 10, and while she "gets" what her dad has. She
doesn't "get it" at all and probably won't until the time comes
when we ALL have to "get it."
Honestly there is NOTHING that can really help, in my opinion.
We talk a LOT. We ask a LOT of questions. We keep communication
very open. It's how we have always done things anyway. So
we've just thrown cancer into the pot and stirred a little
longer. But as a family, we have always tried our hardest to
talk about things very openly. Maybe too openly, but I prefer
open to not at all. It's healthy to talk and work through
our feelings. Especially now. Holding it all inside will
only cause more problems coming out the other side of this.
I'm sure there will be some problems, anyway.
It's like another blog post where I asked how does one really prepare for this? Do we read books about cancer and dying?
I think we just live it and take it a day at a time.
We have all attended group meetings at the Cancer Wellness House here in Salt Lake. Kyle and I go and talk to the support group,
while the girls attend a group for children of cancer patients.
The Huntsman Cancer Institute also assigns a social worker to
each cancer patient. Our Social Worker is Angelique, she gets
the terminal patients. (Lucky her!)
We meet with her almost every week and have also sat in a private one on ones with her to discuss our concerns, feelings and anything else that comes to mind. From religion to movies.
Does it help? I don't know. She's great and we really like her-but again--does ANYTHING really help? It's a process, definitely.
Some days the cancer weighs a thousand pounds,
and some days there is just the whisper of cancer
floating in the back round of all we do.
We've tried to explain this to people, but for everyone else
OUR cancer gets to go away when they leave us. Poof, gone.
They have their own life. And this is HOW IT SHOULD BE!
I was talking to Kyle's brother and he had the DECENCY to
admit that he DOES forget...it's true. (and again, it's how
it SHOULD BE!)
For us??? It is ALWAYS here. Always.
Now does that mean we're always crying and sad and depressed?
NO! Absolutely not!! But even on good days, the cancer is
ALWAYS there. What is coming, is ALWAYS there. It doesn't ruin
our life, but it never goes away. I don't know how to explain
it any better than that.
Couple time? Are we getting it? Yes. We try and make time
JUST for us. If that means going out with friends for dinner.
Or chips and salsa. Or grabbing Kyle after work on a Weds.
afternoon to go see a movie and eat a dinner. Yes. We
run errands together, or go shopping or to Home Depot. Even
if it's just to hold hands in the car or talk. I think this
is one thing we are actually doing pretty well.
Seizing moments of time to make memories while the making is
good. There is never enough time, but we're making the
most (usually) of what we have.
------------------------------------------------------------
Angelique, who has been a Social Worker for 20 years now asked me this question in a one on one I had with her.
She said, "Without thinking--tell me the ONE THING that is
the very most important to you right now. At this time. During
this experience."
It LITERALLY took me ONE SECOND, maybe half of one second, to tell her my answer, "My family. Time with my family."
A warm feeling of peace washed over me as I said this.
THIS, my family, is THEE most important thing to me right now.
Having time and memories with them. Coming to chemo with Kyle.
Holding his hand while he takes this journey.
She said to me, "That is YOUR answer about where your priorities
need to be then in this journey. The rest will come. Things will fall into place. Everyone's answer is different. But
that is YOUR answer. That is the thing YOU will regret if
you don't do it NOW."
She told me she's seen this enough to know, it's NOT easy, but
people NEED TO stay true to what matters the most to them.
If not, they will have regrets when it's over.
We're taking steps for the future. We are waiting on answers
to questions. We are processing this a day at a time. That's
all we can do.
The rest will come. When it comes.
One answer to one question.
That's what I've got for today!
Have a great day everyone!
I will try and answer them.
No one asked here, but lots of people asked on Facebook.
Here is question #1, and the answer.
1. What physical symptoms is Kyle experiencing now that chemo is in full swing? Is he still working? What have the kids dealt with emotionally? Is there a book to help them (that sounds condescending I think, how does anything HELP)? Counseling? Are you getting enough "couple" time together in addition to the family time?
Answer:
Kyle's cancer symptoms have pretty much all gone away at the moment. (the fatigue, vomiting, coughing, fevers and pains)
Chemo has been a HUGE help to him feeling good again.
He is taken the chemo VERY WELL so far and after about one month
he actually felt back to about 80-90% of normal depending on the day.
Chemo is pretty well regimented these days and goes a LONG way to stave off nausea and other side effects. People are not immune
to bad side effects however, it is just that each person responds
differently to the chemo. And each person, and cancer, gets
a different regiment of chemo as well.
His main side effects from chemo are a hot red face the day after (this is from the steroids they give him to help him tolerate
chemo) and exhaustion. He's pretty tired (some rounds worse than others) and takes a nap or three in the 2-3 days following chemo.
He has had ZERO nausea or sickness from chemo.
This is a REALLY great thing!
-------------------------------------------------------------
Yes, Kyle is still working. Full time. With cancer and all
the other stresses of life. If you know Kyle in person, you know why. He will not quit until the time comes when he cannot
physically get out of bed and go. He would MUCH rather be
doing SOMETHING, than nothing. And he says it helps take his
mind off of things.
He also still folds laundry and cleans bathrooms and has enough
energy to mow the lawn again.
------------------------------------------------------------
The kids are all dealing with this VERY differently. As you can only imagine, there were MANY tears shed upon telling them the news. Devastating is the word we ALL felt. Keenly.
As Josh, our 19 year old son said, "Who wants to hear their dad
has terminal cancer?"
Josh tends to be more realistic about things. And his attitude is "My dad is still here, I don't need to be sad until he's gone."
Which in some ways is really great.
Grace (16) and Eliza (13) ADORE their father (not that Josh and Olivia don't adore him), but they have a special bond with their
daddy.
Grace snuggles a little longer and hoovers a little closer.
Eliza is 13 and it is just hard being 13, right?
Add THIS on top of 13 and what do you get?
A LOT of emotion that she doesn't know how to feel/deal with/process, and a lot of emotion. Period.
Swirling around in the space of our home, manifesting in many
ways. All understandable.
Olivia is 10, and while she "gets" what her dad has. She
doesn't "get it" at all and probably won't until the time comes
when we ALL have to "get it."
Honestly there is NOTHING that can really help, in my opinion.
We talk a LOT. We ask a LOT of questions. We keep communication
very open. It's how we have always done things anyway. So
we've just thrown cancer into the pot and stirred a little
longer. But as a family, we have always tried our hardest to
talk about things very openly. Maybe too openly, but I prefer
open to not at all. It's healthy to talk and work through
our feelings. Especially now. Holding it all inside will
only cause more problems coming out the other side of this.
I'm sure there will be some problems, anyway.
It's like another blog post where I asked how does one really prepare for this? Do we read books about cancer and dying?
I think we just live it and take it a day at a time.
We have all attended group meetings at the Cancer Wellness House here in Salt Lake. Kyle and I go and talk to the support group,
while the girls attend a group for children of cancer patients.
The Huntsman Cancer Institute also assigns a social worker to
each cancer patient. Our Social Worker is Angelique, she gets
the terminal patients. (Lucky her!)
We meet with her almost every week and have also sat in a private one on ones with her to discuss our concerns, feelings and anything else that comes to mind. From religion to movies.
Does it help? I don't know. She's great and we really like her-but again--does ANYTHING really help? It's a process, definitely.
Some days the cancer weighs a thousand pounds,
and some days there is just the whisper of cancer
floating in the back round of all we do.
We've tried to explain this to people, but for everyone else
OUR cancer gets to go away when they leave us. Poof, gone.
They have their own life. And this is HOW IT SHOULD BE!
I was talking to Kyle's brother and he had the DECENCY to
admit that he DOES forget...it's true. (and again, it's how
it SHOULD BE!)
For us??? It is ALWAYS here. Always.
Now does that mean we're always crying and sad and depressed?
NO! Absolutely not!! But even on good days, the cancer is
ALWAYS there. What is coming, is ALWAYS there. It doesn't ruin
our life, but it never goes away. I don't know how to explain
it any better than that.
Couple time? Are we getting it? Yes. We try and make time
JUST for us. If that means going out with friends for dinner.
Or chips and salsa. Or grabbing Kyle after work on a Weds.
afternoon to go see a movie and eat a dinner. Yes. We
run errands together, or go shopping or to Home Depot. Even
if it's just to hold hands in the car or talk. I think this
is one thing we are actually doing pretty well.
Seizing moments of time to make memories while the making is
good. There is never enough time, but we're making the
most (usually) of what we have.
------------------------------------------------------------
Angelique, who has been a Social Worker for 20 years now asked me this question in a one on one I had with her.
She said, "Without thinking--tell me the ONE THING that is
the very most important to you right now. At this time. During
this experience."
It LITERALLY took me ONE SECOND, maybe half of one second, to tell her my answer, "My family. Time with my family."
A warm feeling of peace washed over me as I said this.
THIS, my family, is THEE most important thing to me right now.
Having time and memories with them. Coming to chemo with Kyle.
Holding his hand while he takes this journey.
She said to me, "That is YOUR answer about where your priorities
need to be then in this journey. The rest will come. Things will fall into place. Everyone's answer is different. But
that is YOUR answer. That is the thing YOU will regret if
you don't do it NOW."
She told me she's seen this enough to know, it's NOT easy, but
people NEED TO stay true to what matters the most to them.
If not, they will have regrets when it's over.
We're taking steps for the future. We are waiting on answers
to questions. We are processing this a day at a time. That's
all we can do.
The rest will come. When it comes.
One answer to one question.
That's what I've got for today!
Have a great day everyone!
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