Update #90: A Successful First Day in Disney

Just wanted to let you all know that today's travels to Disney went beautifully!

Was picked up by our awesome neighbor, Nick, at 5:30.  FREEZING, but easy drive to airport.  No baggage to check so avoided a line about a mile long.  Went through the pre-check security line in less than 4 minutes.  Made it to our gate to enjoy a delicious rubbery bagel and egg sandwich (with chocolate milk, because, why not?).  

Boarded on time in the brilliant sunshine. 2 hours later, touched down in that same brilliant sunshine, plus about 60 degrees!  Easily navigated the Orlando airport and took the Disney Magical Express in record time to our resort.  Met my parents off the bus.   Hugs all around.  Had a yummy lunch in downtown Disney.  Checked into the hotel. 

Picked up my previously-much-dreaded scooter that I'll need to have the energy to go through the parks. Took a joy ride.   Now LOVE my scooter and may just add this lovely machine to my modes of transportation at home!  (See video for a laugh).  

Tucked myself into bed for a little nap. Woke up to the news that my sister's family had arrived.  Heard a knock at the door. Thought it was my sister.  Yelled loudly in FRENCH (with a French accent of course) that she should come in. Chad opened the door. It wasn't my sister.  It was someone delivering a BEAUTIFUL bouquet of roses…one of the prettiest I'd ever seen.  Gave Chad credit for the Valentine's gift.  He sheepishly said, "Well…if it doesn't have a tag on it, it's from me."  Ha!  (Thank you Anne. For a second you made my rock star of a husband look even more like a dream boat!!!!!)  

Had some dinner. Took a long, hot shower.  Got in my jammies.  Just about ready to tuck myself into bed for the night and wanted to tell you all that…

I FEEL GREAT! 

Cancer wasn't silent, but it was quiet as a mouse.  

So…thanks so much for your prayers and your words of support and encouragement.  

Please let your heart be lightened (if it's been saddened by my prior post) by the attached video and know that we are already having a fabulous time! :)

Love to you all,

Kristie

Update #89: The Turn in the Race

This Thursday.  

So so different from last Thursday. 

Because I've been a slacker in writing this update to you all… By now, many of you have heard that I had an unexpected stay in the hospital last week.  You may also have heard that I am now finished with chemo. And you may have even heard that I have officially become a Hospice patient. 

Wow. That's a lot of change in one week.  

Actually, that was a lot of change in just a few minutes. 

In the span of one conversation - about 5 sentences in all -  I heard from my doctor that the chemo options are not helping me and that I'm done with chemo.

I heard that Hospice is the best choice for me and that I would become their patient. 

And I heard that I really needed t be admitted to the hospital until my pain could get under control. 

In the span of one conversation.

In less than 5 minutes.

And, you know what?

I am so thankful for that.

When  I was first diagnosed at 27, one of the things that Chad and I knew after I had completed all my surgeries and treatments, is that we probably wouldn't have children biologically.  Not that I couldn't physically have children, but that there might be a risk of recurrence of breast cancer if I were to get pregnant.  And, guess what? That was totally fine with me.  Seriously. Totally fine.  You see, I had never longed to be pregnant.  But, because fertility issues didn't run in my family, I just always assumed that I would have children the "regular" way.  I didn't long to be pregnant, but since that was just "how you had kids", I just assumed that's how I would have kids.  So, when Chad and I realized that perhaps that wasn't the way God was going to make us parents, I didn't grieve that at all - I mean, ZERO grief.  Within moments of that realization, I was fine with the concept of adoption and was actually looking forward to it.   

And then, a few months later,  we had submitted all our paperwork to the adoption agency and we began to wait for a baby. Although there was no telling how long that wait would actually be, we were told that it generally could take 3-6 months.  But, because there was a high probability that the adoption would happen without a lot of advance notice, I decided to prematurely stop my job as a management consultant. In fact, I would tell people that I was stopping my job "way early."  So…I had my last day of work on a Friday. Chad and I and John and Laura (along with other leaders) left early the next morning to take 100+ kids to Young Life camp and be camp counselors for the week.  And, the following Friday, we returned home at 6 PM, checked our answering machine, and found that we had a message at 4:30 that same afternoon that the adoption agency had a baby for us.  And, within 48 hours, we became parents to a beautiful 5 lb 6 oz baby girl named Emilie Grace.

Almost two years later, another submission of paperwork to the adoption agency. Another projected 3-6 month wait.  Instead, during a rare-turn-off-the-phones-power-nap by me (only ten days after our paperwork was completed), we received another call from the adoption agency that we were to be parents to a 7 lb boy named Daniel Carter.   Two days later, we drove to Buffalo to pick up our beautiful son.   "Mommy and Daddy are going to Buffalo, Emilie, to get you a brother."  

I guess you could say that I do okay when thrown into situations without notice! 

As you might imagine, since the beginning of the Stage IV part of my cancer journey 4 1/2 years ago, I've had countless thoughts about how this last part of this journey might go.  While I don't think I spent time a lot of time dwelling on it, I would be lying to you if I told you I hadn't had countless moments – even fleeting ones – in which I asked myself and God:   

Would I have to be the one who made these decisions?  

Would Chad and I agree? 

Would I just get too tired out and frustrated with chemo that made me feel yucky?  

Would my doctor have to twist my arm to move to palliative care?

Would I have to convince my doctor to let me stop?

Would I have to face my kids and tell them that I just couldn't do it anymore? 

Would the chemo just make me so stinkin' sick that I would be virtually destroyed by the drugs that were supposed to help me fight this disease?

Would…. Would… Would…

So…on Thursday when I left my house at 9:30 AM as a girl who was going to get yet another chemo treatment…and when I returned on Saturday at 4:30 as a girl who was now a Hospice patient, I was incredibly thankful that that's how fast this last turn on the course of my breast cancer marathon had gone.  

So. Incredibly. Thankful.

It was easy.

Don't get me wrong; I'm not saying that it's easy to be a Hospice patient.  

All that I'm saying is that the decision to become one was easy.

So, now that it's been a week, how am I doing with this?

Not sure I can fully articulate it. It's actually a bit surreal. 

Because I feel as if I'm living in an oxymoron.  

In a situation that shouldn't be true, but is. In a situation that is both simple, yet impossibly complex.  Is bizarre, yet totally normal. Is totally acceptable to me and totally not. 

Here's what's disconcerting…

It's incredibly disconcerting that I now have oxygen systems lining my bedroom wall.

It's incredibly disconcerting to have to send an email like I did today to my children's teachers letting them know that Emilie and Daniel's mom is now in Hospice.

It's incredibly disconcerting to feel parts of my body under my skin that normally you wouldn't feel.

It's incredibly disconcerting to make travel arrangements to Disney for tomorrow and have to make sure that you have enough meds…that you know what hospital you'd call…that you have to arrange to have a scooter available so that you can physically make it through Disney since you certainly don't have enough energy to walk through the parks.

It's incredibly disconcerting experiencing your body starting fail in more and more obvious and prolific ways.

Yeah; that's not easy.

But there's also STILL a joy that exists at the same time. A richness.  A fullness.  A peace. 

It's hard to articulate, but I guess you're just going to have to trust me – and my 4.5 years of trying to live authentically before you about all this – that this joy is true.

It's true and it matters and it seeps into all aspects of this part of my journey.

At the same time this journey is incredibly disconcerting, it is - as plainly as I can state I - also filled with a richness that is deep and real and important. 

That's God.

Only God. 

Because it certainly isn't me. 

And to even remotely pretend it's me is just foolishness. Or insanity. Or a downright lie. 

You can't possibly have a positive enough of an attitude or a strength of personality to experience this depth of joy when your body is failing fast. When your lungs aren't working right. When your vision is messed up. When your liver is expanding at a rapid rate. When your bones are hurting and when you have medications lining your counter to help ease that, or alleviate this, or slow that.  When you look at your kiddos who are still so needing of a mom. 

Oh no; it's not because of me. 

It's all because of God.

Because He is present and He promises to make a difference.  

He promises to infuse His hope into the darkest of situations, in the bleakest of circumstances.

He makes promises and, much to my delight, He continues to deliver on them.  

I haven't tapped Him out. 

Even now.

When we're at this new place. 

When the turn in the race has been quick and sharp and the finish line is almost visible.  

In closing (to this LOOONG update – sorry!), if I could ask for prayer… would you be willing to pray that this trip to Disney for me would be one in which cancer doesn't get to have a loud voice…that my body will cooperate with our plans…that I make it there and back without any incident… that my time with my family would be sweet and special and fun?   I'd totally appreciate it. That would be just an awesome gift. 

Much love to you all,

K.

Update #88: The Longest Day in History Ends with an Ouch!

I seriously think today wins the award for the longest day of my life. If it doesn't actually win it, it is a top contender.

Started at 7:23 am by Chad dropping me off at the chemo infusion center and spending FIVE HOURS there. Easy news is that my mom drove in from Rochester to be with me and the easy news is that my cell counts were high enough to get treatment. Hard news was that, well...I got CHEMO. Bleech.

Then, because of how long chemo took, I had to be rescheduled for an appointment with a retinal specialist from so it couldn't start until 12:45 pm.

Guess how long we were there?

5 HOURS!

Not only did I have to rehash my entire breast cancer story (which always has an element of depression in it and always elicits stares of disbelief and pity from the medical personnel who are recording it), I had to take multiple vision tests which I have always, always found bizarrely stressful. "Can you see better with A or B? With option 1 or 2?  A or B? 1 or 2?"  I don't know. Argh!

Then I waited.

Next, I had to have my eyes dilated to the point where the guy who then looked at them - and who looks at hundreds of dilated eyes each week - says, "Wow. They REALLY dilated your eyes. I can't even see your irises with this incredibly powerful camera that I use every day, all day to take pictures of dilated eyes."

Then I waited.

Next, I had to have fluorescent dye injected in my hand which immediately traveled to my eyes so that said photographer could take 12 minutes of photographs, all the while  feeling like I've been asked to place my eyes against halogen car headlights on brights. And not blink. Unless "told so". Try that one.

Then I waited. Some more. And more.

Then...oh, I am so not done with my story... I finally talk to the retinal specialist who shows me all my images and says...

Easy news: "the edema in your left eye is showing strong improvement. It's actually totally gone in one place and well-reduced in the other place."

Hard News: "But that's actually, surprisingly, not causing your distortion in your vision. That's a now structural problem with the placement of your photo receptor rods (as a result of the lesions to your eye) and I can't fix that." WHAT?? Ugh.

Not easy, not hard news: "BUT because the risk of me harming you is incredibly low and the possibility that I can speed up the edema totally going away, I want to give you a shot of Avastin in your eye. You won't see better but it may actually help your eye in the long run."

So...I then had the joy of having my eye: (1) numbed; (2) stabbed with a needle - that felt like he was going to pluck my eye from it's socket like when you'd put an olive on a toothpick. It hurt like crazy!; (3)  covered with a gooey gel, (4) rubbed with an ultrasound wand, and (5) traumatized by black dots flying at crazy speeds all throughout my vision to the point I thought I was hallucinating.

AND, AND, AND, to top all this off....

Upon peeing after it was over, I realized the hard way that the fluorescent dye travels quickly thru your body and turns your pee, "oh-my-gosh-a-highlighter-exploded-in-my-bladder-and-I'm-apparently-now-eliminating-it" yellow!  I have NEVER seen anything like that!

Arrived home at 6:20. Only to immediately go into homework mode with Daniel. (But, did I mention I can't see anything because you still can't see my irises? Try diagramming sentences without being able to see unless your eyes are 3" from your kid's desk. Yeah, usually not fun to ever diagram a sentence, certainly not fun under these considerations!)

And FINALLY had a two hour "13 year old girl - to mom" talk (which I treasure and was so thankful for) standing over the kitchen island and assuring her all the while that my eyes were pouring out liquid not because I was crying, but rather, as the byproduct of my "not too bad, but tiring day."

Yep. That's a long day.

Super, super long.

So...all that to say...hearing that my vision will not improve was very, very hard to hear. This has had a huge impact on my life,  and I now understand that I will have to learn how to adjust to it, rather than it having to learn the lesson I wanted it to learn: SHAPE UP OR SHIP OUT.

Nope. Didn't get to say that.

Don't like that I didn't get to say that.

Will probably cry in the coming day or two over this new reality for me.

But for now...

My bed is totally calling my name.

"I hear you, bed. I'm a coming."

Thanks for letting me complain.

I feel much better :)

K.

Update #87: New Chemo

Well… It's happening. 

I'm here again. 

Same chemo chair.

New chemo drugs.

Ugh. 

These past few weeks have brought lots of changes to my body and, as a result, lots of visits to Roswell.  Not to belabor anything but in an attempt to be honest with you, here are some of the things I've experienced and heard and lived through these past three weeks: 

Radiation daily to my left eye – 12 days

Radiation daily to my lower spine – 5 days

Radiation induced vomiting (every 20 minutes on our Rich Family Christmas morning)

CT and bone scans, x-rays, and blood work.

Vision issues in my left eye causing frustration to do simple tasks as well as nausea.

Tumor markers that are fairly rapidly escalating. 

Reduction in my weight.   I'm down about 35 lbs since June. 

New meds at home to manage the annoying cough, the bone pain in my hip, the shortness of breath. 

I probably could go on, but I'll spare us further yuckiness.

You can thank me later.

And, I totally get if you just want to delete this or decide to read it later when it might be at an easier time for you. 

I also totally get it if you read all that and your brain jumps ahead to what you are thinking is probably awaiting me.

And if you're thinking  "hospice" or "palliative care" or any of those types of phrases, you must have been eavesdropping on my recent conversations with my doctor. 

Those terms have either been directly mentioned or certainly implied.

As she has said, "We're not at the Hospice door yet, but…"

Hmm.

So what does THAT feel like?

Not sure.

It's definitely not easy.

It's definitely not fun.

It's definitely not light-hearted.

And it's definitely not what I would choose.

No, definitely not that.

But, thankfully, the physical reality of my situation is not the only voice that's speaking into my total reality. 

There is a spiritual reality that is speaking just as loudly – if not much more loudly - than my physical reality.

And it's a welcomed, peace-filling, awe-inspiring voice.

It doesn't erase  - or, like a good mathematical expression, negate - the physical reality, but rather it puts it into a beyond-important perspective.

As I find myself dealing with more effects of this unyielding disease, I find myself surprised by the amount of hope Christ is pouring out.

And astounded by the unleashing of His voice.

And amazed by the continued sacrificial love of His people toward my family and me.

And it's good.

In the midst of the hard, THAT is good.

So very good.

And I am thankful.

So, again, my friends…thanks for walking this hard journey alongside of us.  You encourage me to endure and be patient. To wait. To watch. To trust. 

Couldn't do this without you. 

So glad I don't have to.

Suckers.

:)

My love to you,

K.

Update #86: Eye

Well… I learned something new yesterday that I wish I didn't know:  you can get breast cancer in the eye!  

Apparently there are two small cancerous lesions on the back of my eye that are, most likely, metastatic breast cancer lesions.  I'm not sure what the treatment plan will be at this point for that, but I know that today at 10 I head off to chemo to start a new medication and I will connect with my doctor sometime this afternoon.

When I came home yesterday and told Emilie that it is, in fact, the cancer that's causing problems in my eye.  Her response was hilarious.  

Emilie: I didn't want to tell you, but I thought so.

Me: Why did you think so, Em?

Emilie: Well because you have cancer in your bones and in your lungs so I figured it had to be cancer in your eye too.  Ya know; 3 strikes and you're out.

[Slight pause] 

Emilie: Hey Mom?  What's for dinner?

I totally laughed. I'm not sure why, but I thought that that was just about the best response I could have gotten from her.  Such a matter-of-fact acknowledgement of the pervasiveness of this disease.  Yet, such a glimpse into the fact that, because we've been dealing with this for so long, it's just a part of our life. 

And then…a few hours later.  I wasn't laughing any more.  After a very frustrating evening trying to help Daniel with difficult homework – with eyes that really weren't working because they were dilated from the trip to the neuro-opthlamologist – I finally passed the homework baton off to Chad andI went upstairs and into my closet, laid down under my hanging clothes and sobbed like a baby.  Having a heart-broken tantrum, in fact.  

I told you this would be a messy journey!

From laughing  at 4 PM and being "okay" with this new news.
To sobbing at 7 PM and being anything but okay with it.
Nutty, right?

More later my friends,

K.

P.S. Chemo was long, but went easily today.  I will meet with a Radiation Oncologist tomorrow at 1 PM to hear a treatment option. 

Update #85: The Ugh Revisited

[Do you like the new subtitle I've added to the Update #??? :) ]

So…here's what I know medically so far:  I will start a new chemo drug on Thursday morning.  I'll get it once every three weeks and the potential side effects are what you would expect in a chemo drug. How exactly it'll impact me is yet to be seen.   Because this drug is harder on your heart,  I'm getting an EKG today to get a baseline on my heart health.  I don't expect there to be any issues, but I guess I need to leave room for a 5th Ugh!  As for my eye…I learned today that breast cancer can metastasize to your eye.  Oh how fun. I will meet with a neuro-opthalmologist on Wednesday at noon to have a better idea if cancer is causing my eye problem or something else.  

Breathe. 

Breathe.

Breathe.

On Sunday we were at church. We're all standing singing a song. A great song. A song I love.  And as I'm standing there, my body is starting to tell me that it's getting tired and wants me to sit down.  

"No, I can't do that.  I want to stand and sing.  And besides you're supposed to stand and sing.  If I sit down, what will people think?"  

As I"m having this conversation with myself, all of  a sudden I realized that I let something so important slip to the background.   

This church is my family.

And this sanctuary is like my family room.

If I were at home with my family in my family room and I felt the need to sit down, I'd do it in a heartbeat without apology.  What's more is that I wouldn't even think twice about asking someone to get me a blanket so that I could snuggle under it and take a nap.  

While I wouldn't expect someone to fetch me a blanket in the middle of the morning service(!), I was reminded so clearly that that's what church is supposed to be: a family.  A family that cares for one another and loves one another and sets aside "what we should do" for "what we need to do".  It made me fall in love with my church all over again.  And it made me wonder if someone today needs to know that church isn't supposed to be the place that you wear your "Sunday Best" and put on your "best face" and follow a program to know how much longer it will be.  A place you just walk in and walk out.  I can promise you that Jesus would run far, far away from that definition and beg and plead for us to return to what "church" was in the years while He walked this earth and in the 1st century following His resurrection. 

He would tell us to 

Just come. 

As you are. As you really are.  

Like a little child.  

Loving one another.  

Walking with one another.  

Teaching each other.

Encouraging each other.

Giving to one another.  

Laughing and crying with one another.

Praising His name together – whether that's done standing up or sitting down or laying flat on your back because all your eyes want to do is close.

That's church.

How I pray you thirst for it. 

How I pray you experience it.

How I pray you participate in it. 

How I pray you treasure it.

Yes, my friends, this journey is super hard.  Yet, I know that I don't walk it alone and that lifts my heart.

Be back in touch on Wednesday or Thursday.

Love to you

Kristie

Update #84

Well….I wish I had easier news to share.  The truth is that I don't.  

In fact, I have a "3 ugh" news report for you on this beautiful snowy night in Orchard Park.

I went yesterday to Roswell for what I thought was going to be a quick appointment with my doctor to review blood work plus pick a date after the New Year for a set of follow-up scans.  

If only that actually happened.  

Instead, when I shared that I was out of breath from doing fairly routine activities (due to what I thought was a low hemoglobin count) I was given a few different tests.  Let's just say that I failed them all and that won me the prize of having a special CT to check for a pulmonary embolism.  Good news is that I don't have that.  The hard news is that the cancer continues to progress in both my lungs and liver.  And, my shortness of breath is not due to the low hemoglobin count as much as it due to fluid build-up in my left lung from an increased tumor load.  

Ugh. 

So…on Friday I will be going in at 8 AM for a procedure to drain that fluid from my lung. Then on Monday I will meet with my doctor to review the next options for chemo (thankfully, there are several options remaining) that I will start either Monday or Wednesday of next week.  The side effects of those chemo options are unknown to me at this point, but I'm not anticipating that they will be a walk in the park. 

Ugh.

This has been a hard one.  Hard largely because I wasn't expecting that news.  While I know my body isn't doing great, I thought I understood the cause of that to be from the effects of the chemo, not due to the effects of the cancer.  So, yesterday was a very teary day for me and for Chad.  And, while it wasn't teary for the kids, it was difficult for them to hear as well.  

But wait!  Just like a good informercial…I'm not done yet!  It's not just a "2 ugh" report; it's a "3 ugh" one, remember?  

So…I thought I would send out this update early this morning, but instead, I awoke last night not feeling good at all. Headache and upset stomach.  Hmm…I really must be STRESSED about this new information, I thought.  And, then, about 20 minutes after I awoke feeling crummy, a little boy entered our room and, in tears, complained that his stomach and head were hurting him and he wanted us to set up a makeshift bed for him on the bathroom floor.   Yep; you guessed it…. The STOMACH BUG!  So, rather than taking advantage of my last day of "freedom" to become better prepared for Christmas, I spent the day next to Daniel on the couch.  

Ugh. 

A 3 Ugh report?!? I don't even want 1 ugh.  But I have to have THREE of them to tell you about?!?

I want to be the girl with the No Ugh story.

With only victories.

With only easy stuff

With only things that, if you saw this on Facebook, it would take you 0.10 seconds to click the "Like" button.

Don't we all want that, at least a little bit anyway, for our own lives? 

As I drove into Roswell yesterday, I was listening to a CD that I made last spring for the girls who are in my Tuesday morning Bible Study.  There's a song by Bethany Dillon on it called "Hallelujah".  Here's a link to it and I would encourage you to listen to it. https://www.youtube.com/watch?v=Y-W7Md6mv74

Here's the first part of the chorus:  

"Hallelujah. Hallelujah.  Whatever's in front of me, help me to sing hallelujah."

You know what my prayer was to God right after I pulled into the parking spot and the song stopped there?

"Please don't let this song be a preparation for any news that I hear today."

Does that sound like the prayer of a superhero?

Nope.

What is that prayer?  It's the honest prayer of a girl who has been walking this road for a long time and knows what it's like to hear easy news and what it's like to hear hard news. And who knows which news she'd take each and every day if it was her choice.  

Several hours later, when I got back into my van after hearing this hard news, the song wasn't done yet.  I will admit that I turned it off as soon as I realized that it was still on, but not before the second part of the chorus came on.  

While it  may seem similar to the first, it's totally different.  Totally.

Here's the second part: "Hallelujah. Hallelujah.  Whatever's in front of me, I'll choose to sing hallelujah."

Did you catch it?

The first part asks God to work in our minds and hearts and spirits to empower us to face each and every circumstance with the ability and the desire to praise Him.

The second part tells God that you'll cooperate with Him and you'll actually do it.

The first is the recognition that, no matter what news is heard, no matter what circumstance comes into our lives, there is always something – many, many, many things in fact - to praise Him for.  

The second is the commitment to actually do it…to willingly trade all the frustrations, sadness and fears for the hope and the joy and the peace released by trusting in those He promises.

The first could be considered an act of desperation. 

The second, though, well…that's a choice of the will.

When Laura and I were first diagnosed years ago, we both made a commitment to praise Him no matter what.

In some respects it was a silly commitment.  

We had no idea what depths of circumstances He would have our feet travel and what it would take to utter those words of praise and trust. 

But, over those years, here's what we both learned: The place of Praise – which really is the place of Trust – is the only place we want to live.

We may visit Sadness.  

We may visit Frustration. 

We may visit Anger. 

We may visit Pulling Back.

But we don't have to live in any of those places.

Those are not our home.

So, tonight, as my stomach is churning and I'm praying for the stomach bug to flee quickly so that I'm well enough for my lung to be drained tomorrow (see what I mean…how ridiculous that I'm picking a thoracentesis  over the stomach bug!!)… I'm making my way Home.  I'm stopping the tour of those yucky places and returning Home.  To the place where Rest. Peace. Joy. Purpose. Hope. And Life live.  And I hope I'm not the only one. I hope that if you've been visiting places that have left you empty and dry, that you're headed Home too.   

With love and a humble request for prayers for my family and me, 

Kristie  

.