Friday, June 29, 2018

When and then

Sitting with our oncologist today, I discovered a hard truth about myself. 

My life is a series of 'Whens' and 'Thens'. 

When I get these two projects done, then I will have time to spend with you.
When we get through these next appointments, then things will be back to normal.
When the kids are feeling better,  then we will come for a visit.

Everyday, I hear myself say AND THEN...

The problem is, we never get to the end of then. There is always another then and life becomes nothing but chasing the then. 

For months, I keep hearing other people say, "Things will settle down soon, and then..."

I hear myself telling my kids, "This is just a rough patch and then...you'll be able to do..." 

It dawned on me today, while we listened to the disheartening news from our Oncologist, that we have to stop waiting for the past to catch up to us.  We have to stop hoping for the future to fall behind.  We have to stop living for When, or Why, or How...and live for What Is.

I have to stop wishing and hoping for easier days...this is my day, whatever it is.  When, is never going to happen, therefore, we never reach the then. 

I've been waiting for "When things settle down..." for months and months, years even.  Somehow, when that magical thing happens, then I will start doing all the things I wanted to do in the first place; before Dyskeratosis Congenita side tracked us.

I have missed so many opportunities waiting around for When. 

Things have to change.  I think my little experiment in keeping my sacred bowl ready to receive God's will each day has provided me with some enlightening thoughts.  I know this isn't some original thought of wisdom, but today, it struck a chord. 

We have to face the reality that Shelbie is not going to get better, the boys aren't either for that matter.  We will probably have to get use to her deteriorating health.  The lymph nodes and granulomas are not an easy thing to deal with, in fact, it's downright maddening. 

For the first time, our doctor admitted he was frustrated that he can't make Shelbie better.  The kids are not text book perfect, they don't present in the expected ways for the diseases they have.  They haven't dealt with CVID and the number and size of lymph nodes that Shelbie has.  Is it lymphoma?  Is it something else?  They don't know.

Two years ago, when she had the first PET scan some lymph nodes showed up.  They biopsied the one they could get to easiest.   Now, there are more but a few of the original ones are gone.  Some are bigger, some are stable.  Lymphoma is expected that they would increase in size, not shrink on their own or disappear.  But...it could still be a lymphoma.  It's too dangerous to biopsy them yet.

We decided that in two weeks, Shelbie will have another scan.  If there is any growth in the size of the already enlarged lymph nodes, then we will take the risk to biopsy one and/or start the chemo drug.  If they are stable, we will do nothing at this time and continue to scan at regular intervals.  Being in diagnostic limbo is hard!! It's harder than any diagnosis could possibly be.  It's full of what ifs and whens and thens.   What if it's cancer...then. When...it's cancer, then...

We've been waiting patiently for this to pass so we could get back to our life, as if this was just some unfortunate interruption.  Today, I woke up to the fact that this is life, not an interruption.  Not a side track.  Not the wrong turn...this is it!  This is what we are facing.  This is life.  This is the life that is meant to go on and not go on painfully waiting for better days.  We need to make the best of this day.  In all the mess and chaos, we have to find our best.

AND THEN...

We can say we suffered well. 


Wednesday, June 27, 2018

A long process

The hardest part of blogging is the title. 

This is just an update in the middle of our busy week.

Yesterday was all about lung issues with Shelbie.  It ended up being a short visit because she really can't start treating anything until she knows what she is dealing with.  Our Pulmonologist, quickly said, "Let's biopsy these ASAP."

Until...I told her about the last biopsy she had and how difficult recovery was. Still, she is not feeling good about that PET scan from April the results it showed.  Her biggest worry are the enlarged lymph nodes sitting around the lungs.  She thinks a biopsy would be easy enough in terms of getting to those ones. 

There are basically two different roads this will take...

1.  She wants her re-scanned.  If the lymph nodes are still there, same size or larger, then she will suggest a bronchoscopy with lymph node removal for biopsy.

2.  After the scan, another pulmonary function test

3.  Decide a course of treatment. 

She was actually quite surprised that they haven't already started her on the chemo drug Rituximab.

Tomorrow we will hopefully get a more concrete plan in the works after Oncology clinic but I have a feeling this story line will take us through the summer before it resolves into a decided course of treatment. 

It was a difficult day for Shelbie.  The waiting is hard, especially when these different specialties see the scans and read the reports, they all sort of panic a bit and here we are just la-de-da- ing our way through life, trying to do anything BUT panic.   Our Oncologist is considered the lead doc in this matter because it overlaps immunology and oncology so he apparently, has the last say. 

Sam had another CBC to see if the transfusion made a difference in his counts.  He did get a bit of a bump but not much of one.  His counts are still very low.  His red count is up a tiny bit which gives us a little breathing room.  We are planning to stay the course in treatment for him.  His next transfusion will be on Thursday of next week and every Thursday from here on out.  The specialty pharmacy is sending all of the supplies and the new pump out tomorrow so I will have a few days to get my medical supply closet organized.  We have a growing closet of stuff!

We are taking it all in stride and despite a crummy day yesterday, Shelbie is feeling better about things today. 

Monday, June 25, 2018

Enough is Enough



Everyday Sacred was the name of a book I read quite a long time ago, by Sue Bender.  It's a book that chronicles her quest for joyful wisdom and simplicity.  Who couldn't use a little joyful wisdom? To discover this, she lived with some Monks and observed their life.

She goes on to tell this story about how, each morning, the Monks leave the Monastery with a single bowl in hand.  They walk up and down the streets of the village and whatever is placed in their bowl, becomes their nourishment for the day. Enough.

Image result for japanese bowl filled with gold
She goes on to make the following analogy.

"The first bowl is inverted, upside down, so that nothing can go into it. Anything poured into this bowl spills off. The second bowl is right-side up, but stained and cracked and filled with debris. Anything put into this bowl gets polluted by the residue or leaks out through the cracks. The third bowl is clean. Without cracks or holes, this bowl represents a state of mind, ready to receive and hold whatever is poured into it. Sometimes I am that first bowl, so busy being "productive" that I don't notice when the very thing I want,  presents itself. Sometimes, I am the second bowl, with such a fierce judging voice that focuses on what's not working that I'm unable to see or appreciate all the things that are going well. And sometimes, wonderful times, I am the third bowl, able to be present and absorbed in what I am doing, whatever it is."  Sue Bender.

It's such a beautiful thought and it came to mind again, over the weekend so I thought...

This week, I am going to practice the art of enough...at least that is what I am calling it.  I am going hold my bowl out each morning and whatever God sees fit to place in my bowl for the day, I will appreciate it, accept it and it will be enough and I will use it for my good.

So often, I find my bowl with cracks and holes and no amount of good remains in the bowl.  It sifts itself through and I am left with what feels like little, to be nourished on.  I know that at times, God is pouring out blessings but my bowl is upside down and they tumble off, unnoticed and I can hear myself complaining that I never get what I need.

This week, I have a firm grip on my bowl and I will accept what comes.  It's already proving to be harder than it seems.

Today alone, I spent, a couple of hours in the hospital for the last of the tests I need before I start my new treatment for my AS- to get it in remission.  It has attacked my ribs now and my lungs are unable to expand as much as they need to because my ribs are no longer moving properly due to the disease process.  I came home to bill collectors calling, insurance issues- both health and car and a young man who thinks it would be a good idea to move to Arizona.  Seriously.   How to tell the certain young man that he can move across town, or 4 hours South but beyond that, he better have a solid plan of making 6 figures to pay for his own health insurance and start over with doctors...AND clean his room....it's all tricky business!

I have a million deadlines since the remainder of the week will be spent in back and forth trips to Salt Lake for Shelbie's follow up appointments to get the final word if she will start chemotherapy next month.  She will also see her lung specialist since there is a new batch of tumors in her lungs, crowding out the healthy tissue.

It's not an easy week to start this experiment in living joyfully, with enough.  At about 4:15, I started to panic that my bowl was filled with too much of what I didn't need or want! I clearly remember not asking for all these problems today.

But, I pictured my beautiful bowl,  a little well worn but filled with the things God gave me today to grow.  So, at 4:35, I took in a deep breath of Faith, cleared my throat of the fear, took a sip of fresh courage and emptied what I could from my savings to keep the bill collector happy for another month or two.  And though I seriously feel like I am going to fall apart at any moment, I didn't.

Looking back over the day, I can see that I received enough... and enough is enough.  I could see through the unexpected turns the day took, that today was a sacred day.  A day that I received with an open heart all that God had to give and though I may not be able to make sense of it today...that day will come soon enough.

Friday, June 22, 2018

The Width and Length of Being Human

"I don't want to get to the end of my life and find that I just lived the length of it.  I want to have lived the width of it as well." Diane Ackerman

We know the length of life...when it's over, it's over but what about the width?

How far does that extend? Farther than the eye can see or just far enough?

The quote above was long gone and forgotten about until I saw it, as I walked passed my daughter's picture that hung in the corridor at the hospital Cancer Care Center.   I remembered it is one of her favorites.

Today, Sam left his mark in the room where we spent many a long days with Shelbie.   Today, he started his first official treatment and it will happen every week for the remaining length of his life.  That sounds overwhelming, and it is.

Things went well today.  He had no reactions or negative side effects.  His temperature is a little wonky tonight and he's been sleeping most of the day, but that is all to be expected.


It's been a big week of getting all of this co-ordinated.  Our doctor has worked endless hours working with our insurance company and the specialty pharmacies, as well as the hospital here and our team in Salt Lake.   It was Thursday night, when I realized, in part, the broad swath of emotion that this disease has covered.

"I have looked through your family's history and what you are going through with your children and I have to say, I have never heard of anything like this before!  You have such a unique set of challenges. I have heard all of the conversations in phone calls, read the notes, listened to your doctors and you have been so patient with us and with this process.  I don't know how you are doing this.  Your son is going to be okay.  He'll pull through.  I will make sure he gets the care he needs. I want to give you my direct number and I want you to consider me someone who will help you through this. We will take care of your family, you don't need to worry. "

This is what God said to me on Thursday, shortly after my morning prayer of pleading and complaining (just keeping it real)  except he said his name was Bob.  Bob, from the authorization department with my health insurance company.

I am not sure how to begin to express what it felt like to hear his voice.  To hear those words and for one of the few times in our history of this struggle, to have someone witnessing the size of the mountain, that can surely eclipse our sunny corner of the world, was overwhelming.  He left me speechless.  It was exactly what I needed to hear in that very moment.

Bob saw beyond the dollar amounts and expressed his compassion for us; the width of our life was witnessed and the breadth of his grew. I fell apart.  I propped myself up on his compassionate words of humanity.  He even called Sam and wished him luck and offered a measure of support to him personally. 

Everyday is a new struggle.  Everyday is a new kind of hard.  Everyday we climb that mountain or try...truth is, we sometimes just sit on the edge of the mountain and dangle our legs.

When I can have a day or two to catch my breath, sleep for a minute, refocus and reset myself on what matters, I can absolutely leave all this with God.  But as you've witnessed from past posts, there are waning moments when I shrink and I can't do anything but snatch it out of his loving care to pour my worries out upon it.

Alas, we wrestle.  We try to be better than we were, what we've been.  It's the width that matters as much as the length.  Bob expanded the width of his life when he extended kindness to me.  We all need to be more like Bob.   In a world where every good word is criticized and many deeds go unnoticed and patience wears thin and we say we care but we care less...be a Bob.  Be the one to expand the width of your life.  Extend to others, deserving and otherwise...a little love, the benefit of the doubt.  Give each other a little Bob.


Thursday, June 21, 2018

Juneteenth

I missed Juneteenth.  June 19th, 1865, the abolition of slavery in Texas.

I planned to acknowledge it and celebrate. I circled it on the calendar, wrote it at the top of my planner, the week of.  I've honestly never thought about Juneteenth before, in my whole life, but for some reason, this year, it was important to me. I was going to gather my kids and it was going to be an epic celebration.

It didn't happen.  I missed it altogether.

I wanted it to be our day of emancipation from Dyskeratosis Congenita.  The disease that has produced nothing but scarcity for us.  The chronic reminders that change what could become of each day.  It would be wrong to suggest that we have no say in this...because we do, and we use to live our best life but then I got tired and forgot against the current of disease and we became enslaved to a different way of living, of thinking or despairing.

Ironically, I was in my own head on the 19th, giving up the day to fight a losing battle with insurance companies, bill collectors, anticipation of transfusions, expensive therapies, the dim future; all the hard things of this mortal world.  It was thrust upon us and I went with it. It's the story line that keeps me dangling on every new symptom because it's all we know now.

I didn't want to take away from the very tragic reason in history, Juneteenth was meant to represent.  I wanted to borrow the idea and have one day that we lived free from worry.  A day that we could celebrate life in a wholly joyous way.  I wanted it to be a day of creation, not destruction. I wanted it to be memorable, compelling, a day we would all remember as the best day.

June 19th wasn't the best day.  Today wasn't the best day but it wasn't the worst day either.

I read recently, that the power to create is linked to the power to destroy.  The same part of your brain that registers trauma, is also the part of your brain where healing happens.  I wanted our Juneteenth to be a day of healing and creation, if even for one day.

I wish every day could be Juneteenth.  Is that too much to ask?  Is it even possible? Perhaps in lofty ways, we can be free from whatever it is that keeps our thoughts enslaved to discouragement.  But let's keep it real...in a perfect world, we would be...well perfect!  Surprise!  We don't live in a perfect world and perfection is not even a human trait...yet. There are no perfect days.  We can have near perfect days, better days, days we manage to survive.  Maybe that's good enough.  Even one little pocket of freedom felt is all we really need.

Wednesday, June 20, 2018

I accidentally grew up

Without any effort at all, one month folds into the next and summer arrives, gives way to Fall, the leaves disappear and a new year is upon us and in these wrinkles of time, I am nearly 50 years old.  

It came quite by surprise.  There were no inspirational talks I can thank for getting me to this nigh on chronological milestone.  No quotes hanging on the walls of my room, reminding me to grow and grow up. Perhaps you could say... 

"It was one of the best days of my life, a day during which I lived my life and didn't think about my life at all."  Jonathan Safran Foer.

So, it just happened.  I grew up, quite by accident.  I grew into this middle aged woman with silvery strands of white hair and I thought the other day, how very strange this is.  I scarcely remember how I did this, yet here I am.

As I wring my hands and pace the floor in anticipation of what is next, I read the scraps and memos of scrawled out notes, reminding me to be happy.  Find Joy in the Journey, one yellow note reads.  There's even a sign on my wall, I walk past daily, a gentle reminder that 'We can do hard things', except, someone added the letters, i-s-h to hard...'We can do hardish things' it reads now.  I laugh at the half truth of that.  I'm not even sure most days that we can do the hardish things.  Reminders and fantastical thoughts urge us on, coaxing us to rise to the life we have been given; and grow!  Grow spiritually, mentally, and emotionally; catching up to what should surely be 50 years of wisdom.

It's not quite as easy, 50 years of emotional work.  Why is that?  Why is it, that happiness cannot be counted on like aging that happens without one bit of attention or intention for that matter?  Why is it we have to work and sweat over the small things like joy, peace, contentment, gratitude, kindness.  We have to pencil those virtues onto the To Do list, of another exhausting day, or the dandelions of distress and despair flourish? 

I don't have the answers.  I keep expecting things to be different, as I continue to allow the most distressful events,  take up the center of my heart and soul, while the things that matter, fall along the tattered, raveling edges of the day. 

Wouldn't life be lovely if were accidentally happy?  Content? At peace, no matter what?  What if we accidentally accepted God's will and all the struggle and dis-ease was not something we had to go "through", it just was....And it really was just fine?  Why do we convince ourselves that sad and hard life events are just something we need to get through and then everything will be fine?  

What if there are no 'events', life just is?  It's not something to get through or endure...til the end. What is the end and we think it's the end when we 'get through' one thing, only to be disappointed when there is a yet, 'another thing' to 'get through' and the end becomes this carrot on a stick we chase incessantly.   

Maybe, the rhythm of all the paradoxes we live through, give way to this beautiful life we don't have to run from, take a vacation from and all of a sudden, quite by accident, we've lived the best life, without thinking about life at all?  

That would be the best life, really! 

Tuesday, June 19, 2018

The Anticipation

It's like Christmas around here as we wait for insurance to determine the fate of Sam...

It's not exactly like Christmas because there are no Jingle Bells, no gifts, no treats but there is a sort of anxiety and sleeplessness that has ruined the last few nights.  His counts are just so low!  He isn't running a fever so that is our only saving grace at this point but the second he does, they will put him in the hospital. For now, we have come to an agreement that Sam will go on an outpatient basis to get transfusions and Neupogen- the drug to coax his marrow to push out a few good cells.

 I couldn't figure out why our insurance denied the treatment Sam needed last weekend until the Specialty Pharmacy called yesterday.

They apologized for not being able to get anything authorized because the only way insurance would cover it, is if it was done inpatient.  She kept talking about Remicade as the drug in question.  I finally questioned her on why they were trying to authorize Remicade?  Finally, it became clear someone along the way had made a medical mistake and was trying to authorize an immuno suppressant drug called Remicade which is not at all what Sam needs.

So, that was corrected and we are still waiting on authorization.  The pharmacist also said, "Next year, we can try to get you set up with some patient assistance to help you cover this cost but this year, we can't do that for you."

"Okay, how much does that help with?"  I asked
"$5000.00 of roughly $15,000." she replied.

I swallowed hard!!  $15,000 every month for Sam's treatment.  Sadly we have the worst insurance known to man and at the rate they are going with denials, I'm scared that once we start, they will drop us, our rates will go sky high-er or we will max out our benefits too fast.   This is a life saving treatment and it feels really scary to be at the mercy of an insurance company and me...I'm am completely overwhelmed with the cost of taking care of my family these days.

I have to pay tribute to our sweet Immunologist Dr. Gundlapalli.  He has been the very best doctor we have ever had.  He texted me regularly through the weekend, even Sunday.  He texted me several times yesterday, today and tonight.  He is so concerned with Sam and he's been working so hard to jump through the ridiculous hoops our insurance company has put him through.  Everything would have been so much easier if I had of consented to take Sam to Utah for a brief inpatient stay but I refused that.  He was compassionate and understanding and worked with me; with Sam.

Sam is very upset and frustrated that this will be his new normal every week.  It's hard on so many levels.  I did talk to our local hospital this afternoon and they are guessing they will have the paper work completed and Sam will spend 12 hours on Friday in the hospital to start his first treatment.  That will be a very sad day. 

I was going to talk about how I nearly burned down the kitchen on Sunday.  When I say I am tired and having a hard time staying focused...I really mean it.  I seriously have no recollection of even putting a pan on the stove but I did.  I was making rice pilaf and put a 1/2 C of butter in a pan and turned on high heat.  I don't know how much time passed but I was jolted back to reality when every smoke alarm in the house went off and smoke filled the house!  FILLED the house. 

Shelbie and Sam were downstairs sleeping and they ran upstairs screaming that there was a fire but I was already dealing with it.  Flames over 12" high flew out of the pan.  The microwave above was black.  I was so disoriented, I grabbed the pan and ran it to the sink to pour water on it but then remembered that water on a grease fire explodes.  I set the flaming pan down on the counter, below the upper cabinets and ran to get a lid from the cupboard across the kitchen.  I didn't think one thing through.  I felt so confused the whole time.  I did get the fire out but melted the counter and black smoke covered the kitchen. 

My house still smells like a boy scout camp.  I finally got the last of the black smoke cleaned off the ceiling!  What a mess!  We are so lucky and I feel so stupid.  Needless to say...we didn't have rice pilaf for dinner.

Sunday, June 17, 2018

Father's Day and Such

Today has been a big day.  Well, of course it's Father's Day and that's big!

 I'm grateful for good parents; a great father.  I'm grateful my dad has been faithful, wise and loving.  He has set an example for me and my kids of faith and charity.  Growing up, he was always helping others and doing wonderful things the money and talents he has been blessed with and without a doubt, his family was on the receiving end of this kindness.  I'm mostly happy that my kids have such a man to look up to.

And these days...good men are hard to come by.

I'm also grateful for my sons who are growing up to be faithful, good men.  They struggle but they hang in there.

Today, also marked the 13th anniversary of my divorce.  It's so hard to believe that I have been doing this single mom gig for over a decade.  13 years ago, I had no hope for surviving my singleness.  I had no hope that I could amount to anything let alone take care of my family.   I often thought, back then, that if I could survive a divorce, I would be able to survive anything at all. 

Funny how our perspective changes; how we grow into our trials, the very things that nearly crush us.  Not a day goes by that I don't feel some regret in some way, over this.  I wonder if maybe there was something more I could have done...I will always wish and wonder, I think.

Saturday, I drove Shelbie to a family photo shoot up in the mountains, by the river.  A young couple and their two little kids were in tow and they seemed perfect in every way.  I wanted so badly to video the moment so that at some distant day, when life is hard and the world weighs them down and they want to give up, and the word 'divorce' is thrown around haphazardly, I would show them the video..."Remember how happy you were this day?  Remember how you made each other smile?  Remember that you thought you were the luckiest people alive and everything was perfect?"

Maybe our biggest crime in life is forgetting to remember.  So, tonight, I am remembering how far we have come and in many ways, we are less broken than ever and stronger than I could have imagined.

We have some rough moments ahead this week.  Spencer is officially out of money and out of work.  He has been fasting and praying and attending the temple and applying for many jobs.  He's in the 11th hour and waiting patiently is almost more of a struggle than the actual trial.

I spent most of Friday and Saturday afternoon in communications with our Immunologist.  My insurance denied Sam's plasma treatments at home.  It's going to be a fight and a hassle to get that approved.  In the meantime, Sam is in a very precarious position.  They wanted me to have him admitted Friday at our local hospital but I told them I wouldn't do it.  Sam has had a trip to a big trampoline park in Utah planned for Friday and Saturday.  He begged and pleaded to not go to the hospital.   He hasn't been running a fever so I let him go to Utah.  I justified this decision with the fact that  he was closer to the hospital there if anything went South. 

Saturday, it was decided that they will make arrangements for him to start receiving plasma transfusions and IV Antibiotics here at the hospital.  He is congested and getting a cold so that has everyone getting a little anxious considering his counts are soooo low again.  This news was met with a great deal of frustration and upset when I told Sam.  I did convince the team to let him be outpatient at the Huntsman Satellite Clinic here.  I will take him up daily for treatment.  Hospitals are the worst places for sick people so I hate inpatient visits.

So, that's the plan for the week.  And...I almost burned the kitchen down tonight, quite literally so I will post more on that tomorrow!  Whew...it's been a big day! 


Thursday, June 14, 2018

A Bridge Too Far

Me after my doctor's appointment...Shelbie bought a kiddie
pool for a photo shoot she had with her Hedgehog.
Ate my dinner alone- poolside.  LOL.  My dinner was actually
just a stiff drink of coconut-pineapple water. 

I drove home from the surgeon's last night thinking about the boundaries of life.  What they are, where they sit and how we determine them.


I have to have surgery on July 2. I don't think it's going to be a big deal but it's surgery nevertheless.   He will make a 1 1/2" incision on the top of my hand and take out a solid mass that has grown in the joint of my wrist and under the tendons.  It's creating constant pain, swelling and loss of function in my hand.  I asked him if there was any other possible thing I could do to avoid this but there isn't.  It's been a bother for almost two years.  For two weeks, it will be immobilized and for another 4-6 weeks there will be some "difficult" nerve and tendon pain as I retrain my hand to work again. 

As we visited about this procedure, I asked him if I could do it awake?

It was shocking to hear myself say that...He is going to open up my hand, dig around the tendons and all those nerves and I am requesting to be awake.  Awake?!! What kind of crazy notion is that and where did it come from and how can I possibly think this is going to be a good idea?  Then I asked if they didn't give me any narcotics or Versed if I could just drive myself home?

I didn't have anyone there on "Team Kat" suggesting I might want to try anesthesia, so awake I will be.  He didn't argue...questioned my mental status... but he didn't argue. 

He simply said, "Okay, we'll put a blood pressure cuff really tight on your arm to drain the blood from it, and then will just do a local and I should be able to work fast enough to get it out before we need to release the cuff."

Okay, that right there changed the location of my boundary a bit. 

I'm willing to have surgery with a local...and even awake...but I am not willing to have a blood pressure cuff squeezing blood from my arm!  Nope.  That's a bridge too far.  Tooooo far!

I have been living with myself for awhile now and I still don't get how I come to the conclusions I do.  This will be the third surgical procedure I have done awake.  I have had a D&C and uterine biopsy done without even a local...nothing.  That sucked!! It was million times more painful than childbirth.  It was two months after I got divorced and the kids were little and I had no "Team Kat" that could drive me to the appointment that was almost to Jackson Hole, WY so I chewed on a stick...I thought it was as stick, it was my arm, but it healed.

A couple of years ago, I had a lumpectomy with a local.  That was suppose to be a very simple 15 minute procedure but nearly 2 hours, 3 tumors instead of 1, uncontrolled bleeding later, he was able to complete the task and sew me up.  I vowed then, I never wanted to smell my own flesh burning...ever!

Okay, well this has become a longer than necessary post but my point is...it's funny how we determine the things we can and can't accomplish in life.  It's funny to consider the things that break us and the things that build us.  Where one is broken, another is built.  It's interesting to me and often it is the smallest thing that sifts out our strength, courage and determination, not the big, obvious challenges we face.  I suppose that is why we do sweat the small stuff.

In other news...Sam had a CBC yesterday.  We are at the point in time when all the treatment he received three weeks ago is gone from his system.  The IVIG lasts 21 days.  When that is gone, you can get a feel for what  you are dealing with.  If his counts were taken out by a virus or bacteria they could never find, then his counts, theoretically, would resume to his 'normal'.  Sadly, they resumed to almost the identical level they were when they admitted him to the hospital.   I texted our Immunologist right away and faxed the Oncologist.  Our Immunologist got back to me right away and he is very anxious about the situation again...I am too but I haven't heard back from the Oncologist yet about the plan.  Sam isn't running a fever so I guess we will just watch and wait until further plans are  made by the powers that be.


Wednesday, June 13, 2018

Dips and Drops

5 years ago, next month, the kids and I headed to Florida for Sam's Make A Wish.  His wish was to ride the largest roller coaster in the United States.  I'm not exactly sure where that is but they sent him to 5 of the top amusement parks in Florida so he could ride every single roller coaster.  

I do not like roller coasters.  I can't imagine anything worse than riding a roller coaster so I had some concerns about this trip.  One, I had to drive us around Florida.  Two, I didn't want to ruin Sam's Wish by watching from the side.  Once we got to the first park, Universal Studios, and I had the Minions ride under my belt...I noticed that there were small signs at the entrances that described the ride; if there were drops, and how high, spinning, dips, loops...after reading about the terror, you could then decide if you wanted to engage in the paralyzing anxiety that accompanies the ride. 

The only problem with this, was that because Sam was a Wish kid, we all got to go through a special entrance and avoid all the lines, so, I didn't get to see the little sign of doom and make an educated decision if I would ride or not.   

The day was going okay, I was managing most of the rides, even being stuck upside down for 20 minutes in a power outage on the Harry Potter ride, with a 12' hairy spider, inches from my face.  

 Now, just to clarify, my kids were aware that I would ride everything but the Drop of Doom and a roller coaster.  They promised me they would allow me these passes on the trip.  I trusted them.  I actually trusted them.  The kids were running to one ride and I had no idea what it was and there was no line so we went through the regular entrance.  They were just boarding the ride but I was trying to stop and ask the guy what kind of ride it was, as they were dragging me along. 

"Just c'mon!  It's fine.  It's not a roller coaster!!"  They all pleaded
"Does this have big drops or loops?" I hastily asked the guy at the booth.
"Nah, it's a kids ride." He shouted back over the clanking metal.

Nope!! Not a kids ride.  It was a roller coaster.  We were going backwards, upside down, falling through 50' drops, loop-d-loops, 200 mph...the whole 9 yards.  By the time the ride slowed back down to the entrance, and I found my stomach that had been left behind, I decided maybe it wasn't so bad.  I know!!  I hated to admit it.  I actually rode it again.  I rode every roller coaster that week in every park, with exception of one that I think actually was the largest roller coaster. 


This week has been a roller coaster kind of week.  Big drops, twists, turns and falling backwards even.  (It's only Wednesday!!)  I'm trying to remember that afternoon 5 years ago and what I liked about it.  More than anything, I think I liked that my kids loved the fact that I bravely faced my fears.  In fact, when we got off that ride, they were laughing and enjoying  my screaming and the faces of sheer terror I made and nothing of how they enjoyed the ride themselves. 

Last night, as we sat around the kitchen table in the late hours of the night, reviewing the day and what the coming one would hold, I realized something.  I actually don't like the dips and drops of roller coasters but it was manageable with the people I had surrounding me.  I am blessed to be going through these hard things with the three people I love the most.  We may be holding on for dear life to one another but we are holding on and holding our own.  

Somehow, as I tried to fall asleep, trying to gather my stomach left behind somewhere at the last drop of the day, I laughed as I pictured God as the guy in the booth...

"Does this ride have big drops or loops?" I asked as I headed to earth...
"Nah, it's a kids ride." He shouts back over the clanking metal.

We are not on a kids ride...that I know for sure but maybe as far as God is concerned it is just about right for us because he's running the ride and I have to believe he has us securely in the place we need to be.  

Monday, June 11, 2018

Enduring...Moving On

Last night, while Sam and his girlfriend built a blanket fort for his little sister, (my Wasband's little 5 year old who I babysit on occasion...and she calls me Kat...I know, it seems weird but I try to be a peacemaker so my kids can build strong roots with her and she's adorable...so it's a win!)   I went through my old drafts folder from all the things I've written that never made it to the blog.

 This is a journal entry from a year ago that I archived but somehow it still fits.

"I could endure, but I could not move on." She wrote.

This, from a girl whose entire family died in a carbon monoxide accident while she was serving a mission for our church. She doesn't write often on her blog anymore but this struck me as feeling familiar. 

Am I in the same place?

It's hard to see any progress in the day to day.  I like to think I'm going somewhere but I also think I often sit on a throne of lies and denial.  Enduring implies a positive thing; to bear with patience, maybe even a joyful thing?  I think I'm just holding on...for dear life, I guess you could say.

I don't like this place.  Everyday feels like waiting for the next crisis to hit.  Everyday feels like I'm holding my breath, just biding my time til I can go to bed and try to forget the angst.

                                                    -----------------------------------------

It is still relevant and current today.   In fact, last week, I was contemplating how to get out of this funk that I have been in for over a year now!  I literally do nothing but take care of my family and work like a crazy person.  I no longer come expect anything different but struggle.  I know that answers to prayers come, but never in the way I expect or think I need.  It has made me question what I’m doing wrong with my life. I don’t think I have a bad attitude, just worn out.

I didn't really come up with any good answers on getting unstuck.  I am trying to do little things to change my focus from holding my breath until the next horrific thing, to taking a breath with one new and small thing that helps change my focus.  The past few days, I've gotten back to some of the books I was reading and trying to finish several months ago. . I miss learning about things other than Medical research. That’s been a good change.
 

Sunday, June 10, 2018

Living in the meantime

We are in a holding pattern of sorts around here.  Not much is going on in terms of kids and health. 

Some of Shelbie's bone marrow reports are back things are looking pretty good.  I have a lot of things to sort out on her this week.  Her plasma came up for re-approval from the insurance company and that has been held up for the past three weeks.  Still no word on approval and I gave her the last transfusion this past week.  That means, we have nothing for this week unless it all gets sorted out tomorrow or Tuesday.  I'm a little nervous. 

Somehow, her appointment with our Oncologist got cancelled and made with the Neuro Immunologist that follows her epilepsy and also co-manages the CVID.  She may be the one that ends up making the call on whether they try the two chemo medications to slow the growth of the granulomas.  That appointment is in two weeks.

We have one more week before we re-run labs on Sam to see if his counts, specifically his red cells are still declining, stabilizing or coming back up.   We will also look at his liver function.  He seems to be doing slightly better.  His eyes aren't yellow anymore which is a good, he is still quite fatigued but managing to do his three part time jobs. 

This past week, I officially got laid off from one of my part time jobs.  It accounts for almost 1/3 of my steady income.  I was hoping they would give me a couple of weeks notice but that was not the case.  I was frustrated for a day or two but moving on.  In some ways, I can see that it will be a good thing.  I needed to let something go anyways.

It's hard being in this space of waiting for outcomes, especially after such a stressful few weeks of hospitalizations.  I learn to live in high alert all the time.  When things calm down, that almost feels harder.  I've been so tired.  Extra tired than usual.  A couple of nights this week, I had to go to bed at 8:30.  The last time I went to bed at 8:30 I think I was 10 years old.  Today, I came home from church and went straight to bed.   I woke up when someone knocked on the door to see if I could watch their daughter on the spur of the moment...so currently, I'm babysitting. So glad I got a "nap".  She has more energy than I will ever have again!

This week, will be a busy one.  I am meeting with a surgeon on Wednesday to see about operating on my wrist.  I've had a lump growing and it's starting to cut off feeling to my fingers, not to mention, I've lost my strength and mobility in that hand and its super painful.  I have taken the month off from playing the organ in the temple because it hurts too much. 90 minutes of continuous playing is too painful. My Sunday playing is a struggle but it's only a few songs so I push through.  Anyways, maybe I'll be surprised and there will be some non-surgical options. 

I have been using this time to think a little more about life and how we will move ahead with things so precarious right now.  Everyone is feeling a little drained, a little depressed, a little overwhelmed.  It's one thing for me to feel all of that but it's another to watch my kids feel all this.  It makes being a young adult extra tough.   More thoughts on this tomorrow...


Wednesday, June 6, 2018

Enjoy these pictures...

I feel like everything has been so hard and depressing here on the blog...mostly because life has been hard and also depressing.  

In all the hospital stays and trips to Utah, we did manage to do a few fun things to get a break from the heaviness.  Instead of 4 pages of words, here are a few pictures I manage to capture that didn't involve a hospital.

Before we knew Sam was in critical condition and would end up inpatient, we went to the coolest museum in downtown Salt Lake called the Leonardo.  It was a hands on kind of place.  We LOVE museums of all kinds.  If I could live and breathe at the Museum of Modern Art in New York, that would be almost Heaven to me. Anyways...the Leonardo was fun for the few short minutes it lasted.
The Wishing Trees.  You could add a tag with your greatest wish written on it.  I could have spent all afternoon reading the wishes of strangers. 
I love this happy picture of Spencer trying to land a virtual plane.
Sam also landing a virtual plane but I think he may have crash landed.  I love seeing that smile on Shelbie.



This was fun...we had to look at ourselves in a mirror and without looking at the paper, draw a self portrait without looking down or lifting the pencil!!  We all did surprisingly well and you can really see the resemblance of each of us!  Ha ha...Sam looks a bit like Picasso though!

















Tuesday, June 5, 2018

No Return Ticket

Man, it's been a struggle around here the past few weeks.  I have found myself on more than one occasion thinking..."I can't wait to get back to the way things use to be."

I'm not exactly sure what time frame I was thinking I wanted to go back to, just anywhere but here, in this moment, I suppose.  The more I think about this, the more I realize, you can't go back.  You can never go back.  Life is lived moving forward.  Even when it may feel you are sliding back, you aren't. It's just that moving forward can often come with more struggle and resistance than usual.

I will never be the person I was 5 years ago, 1 year ago, even one month ago!  Every day, the experiences we have, change us into something else;  a continual evolution.  It has been a disappointing revelation to me because I just want to go back to when life was simple; easy- easier compared to this.  I want to go back to the time when I felt like I had a handle on things and when the laughter came naturally and joy was just there, I didn't have to go hunting for it.

Everything is different now, scarce.  Health, money, peace, friends, time, confidence, courage, joy, hope, security- it's all scarce now and we live in days filled with isolation.  I can see each one of my kids struggling in much the same way.  They are tired.  We 'do' things; wander the stores, just to make us feel like we can still break into the world beyond chronic illness.  We mingle with strangers, even if at an arm's length and that seems to be enough to trick us into thinking we might still belong in that world...instead of all alone in ours. On more than one occasion, they have asked why I can't fix things anymore like I use to?  They get frustrated with me.  Things are beyond fixing and none of us can bear to state the obvious, so we go on hoping for a fix that may never come.

Two weeks ago, when Sam was in the hospital, I would sit on the couch beside the large window that looked out on the terrace and I watched patient after patient lap the perimeter of the large terrace, alone.  Slowly, they would push their IV a pace or two ahead, mechanically, their feet would follow.  It's a different world in a cancer hospital.  There we all stay in our loneliness, together.  And we may say that we 'know' what the other person feels like, because we paced off the terrace too, but we don't.  We can never know what they are experiencing anymore than anyone can say that they know what we are going through.  Maybe it's not that physically, we are alone, but certainly in our heart and mind, it feels that way.

I know it won't always feel like this.  These feelings seem to ebb and flow.  Still, what becomes of us when we can't go back to what we were, and what we are becoming feels like someone else, not to mention hard. The thought of feeling this tired and overwhelmed for much longer is not appealing to me and I'm frustrated that I even exist in these deep thoughts for more than one quick minute.  Intellectually, I knew we would find ourselves here but to actually be here, feels different than what I expected.



Monday, June 4, 2018

Bone Marrow Biopsy 3

I just realized I didn't post about Shelbie's biopsy.  I've been so tired.  Tonight's the first chance I've had to sit down and focus on writing.

Her biopsy went alright, all things considered.  Going into the morning was a bit unnerving since it was an entirely new team of Hematologists, nurses and phlebotomist.  There was nothing familiar about this.  They were nearly 2 hours late in getting started and even that seemed out of the ordinary. As we sat in the waiting room, I just kept thinking about how odd it was, that here I sat with child number 3 for a bone marrow biopsy.  Just 8 weeks ago, only one of my kids really needed a biopsy due to abnormal cells in the peripheral blood.  Shelbie and Sam were given a pass from the Oncologist to wait another year because things looked so good as far as peripheral counts go.  My kids' counts are never normal but they've been stable-ish.  One by one, they all went downhill and the one who looked like they had trouble brewing in the marrow, actually tested okay. 

Once they got her on the table, our old PA that has always done them came in to say Hi.  Somehow, I felt so much better.  As it turned out, I did like the new staff and the PA who did the biopsy was very nice and did a great job with Shelbie.  She was a tiny thing...barely over 5' but she was strong and able to get through Shelbie's hard bones, not once...5 times!! That was the part that wasn't so great!

The aspirate part went fine but retrieving the bone for biopsy did not go well.  These are the moments you miss, when your kids are taken to a surgical suite and fully sedated for biopsies.  You sit in a room by yourself and wait, and are none the wiser to all that can go wrong in the procedure.  The first sample of bone was too small by a fraction.  The second attempt, the bone fragment wouldn't come out.  The third attempt, the sample was too small again.  The final attempt was rocky.  The needle kept sliding off the bone.  That was painful to watch.  The PA put all her strength into it and it seemed she was on the bone because she was struggling but then it would jam down past the bone.  That happened two or three times and then she asked our regular PA who stayed to watch, help out.  By the time she was scrubbed up, the first PA was able to get it into the bone.  They had to use a little suction through a syringe before pulling it out. 

So, that was crazy to watch.  Keep in mind Shelbie was awake and talking throughout this so she was fully aware of the struggle it was...she felt it all.  I felt it in my heart... She's had an awful time getting it to stop bleeding.  It seemed fine on the drive home and even when she went to bed but through the night, it bled...a lot!! She didn't discover it until morning. 

By Sunday, she was doing fine.

So, now we wait.   I'm just tired and exhausted from the past two months we have had.  Shelbie will go back in 3 weeks to get the results and see the doctor to make the plan for how to put her granuloma disease in remission- if that's even possible at this point.

I have a busy, busy brain as there is so much going on in every area of my life. I've got to find a way to slow down but that doesn't even seem possible.  The future is very unsure right now I need to work while I can to prepare for what may be waiting down the road.

Friday, June 1, 2018

What a day!

Every night, I go to bed and have convinced myself that I can not do this one more day.

Every morning, I wake up and manage to do this one more day.  Honestly, today has done me in.   The idea of trying to work full time while taking care of three sick kids is becoming a joke...a sick joke, a bad dream.

This morning, Sam and I left early to get to Salt Lake for his follow up Oncology appointment from his inpatient stay and bone marrow biopsy two weeks ago.  Shelbie was suppose to come because her bone marrow biopsy is in 5 hours...but as is customary for us, nothing quite goes as planned.  To make matters worse, there have been tornado warnings and severe thunder storm warnings at home so she was dealing with that, all alone.  That only added to my stress.   We have a security system and it patches in warnings and alerts so all afternoon, sirens were going off in the house to warn of the crazy weather.  It really is a little unnerving.

Anyways...

She had booked some family pictures quite some time ago and they were happening today.  She couldn't move them to a different day because families had planned around high school graduations happening in the area.  So, Sam and I came down, did 4 hours of oncology clinic, left immediately after and drove home to get Shelbie, and with a 10 min. break, turned around and drove back to Salt Lake.  That's nearly 12 hours of driving time!! Ugh...I'm so tired.  Sam had to be back to work so I really had no other choice but to do it this way.  Originally, he was going to bring his own car and drive back himself.

Sam's appointment was not especially good news.  His liver is struggling again!  I couldn't believe it. Sam also had a pretty loud murmur in his heart which was surprising.  Our oncologist had met with our Immunologist and he agreed that Sam needs to be on weekly plasma transfusions.  He has a few things going on that aren't looking good.  His immune markers are very low so that alone is reason to start.  I did learn that when you have any sort of device implanted, like a pacemaker, your risk for serious infection increases a great deal.  So, when Sam was running that high fever and his counts tanked, part of their worry was not only sepsis but that the infection they were hunting would settle around the pacemaker.  If that were to have happened, it would be very serious and they would likely have to pull the pacemaker.  Thankfully, that didn't happen.

They have still not been able to find any reason for the fevers so they are going with a neutropenic fever.  The thought is still an autoimmune issue resulting from his CVID but that doesn't explain the whole picture.  I saw the same pattern with Shelbie though, where counts would rise temporarily with plasma. Sam's counts went up with the Neupogen and IVIG but they are back down again and his red cells are even lower than they were two weeks ago at the time of his admission.  This is very concerning to our doctor.  The plan is to follow up with a CBC and metabolic panel in 4 weeks.  If his counts are still low, or lower, Sam will have another bone marrow biopsy right away.  The Pathologist and our doctor are concerned that Samuel has Aplastic Anemia or bone marrow failure.  I saw that mentioned in the preliminary marrow results but didn't invest much worry into that.  Our doctor explained that his marrow had diminished cell growth in the white cells and red cells.  His platelets were back up this week, at 200 which is awesome.

Between Sam's poorly functioning liver and his low hemoglobin, I understand now why he is so tired all of the time.  I'm still processing this.  I haven't had a lot of time to think.  My boss has been waiting on some plans for a twin home I've been working on for him.  He has a crew showing up at 7:30 in the morning to start digging and I still haven't finished the plans...so, I'm madly trying to finish those before 7:30 am.

Hoping and praying Shelbie does alright for her bone marrow biopsy in a few hours and I survive this week!

Snippets

Life's been cruising along... Shelbie is doing so much better as we wrap up the week.  Last weekend, I attended a Neuro-Immunology con...