Thursday, August 30, 2018

The Hard Truth

I've been putting off the hard truth for months now!  I have skirted around it, tip-toed through it, jumped over it...anything to avoid it and pretend it didn't exist.  It was working beautifully until I saw one knot in my snarl of avoidance, break free, and it all started to unravel which ultimately ended in a mess.

A few months ago, or maybe it was just weeks, Sam approached me with the grandest of plans to move to Arizona.  I entertained his dream, actually contributed some ideas and listened with intent.  I was half interested but thought it was mostly just...well, a dream.  He brought it up often until one day a couple of weeks ago, he actually produced concrete plans!  He was moving in Mid-December and his management position at a new trampoline park would start in January. 

Huh? Is he serious?

Ohhhh, he is serious!  How did I miss that?  It wasn't a dream anymore, it was happening and I tried for days to wrap my head around that and figure out the logistics of him moving away.  I came to the conclusion that he really can't move away because of insurance and his health right now.  I did not want to be the one to break it to him.  This would be a fabulous time to be married so his dad could be the bad guy, but I knew it was all up to me.  Still, I danced around the idea whenever he brought it up.  Tuesday night he said, "Mom, we haven't really talked about this move to Arizona, I need to let my new boss know when I'll be there."

"Yeah, so we do need to talk about that.  I think there may be some things we need to work out."

That set him off and into a tailspin.  We had to have the hard talk about why he can't move to Arizona.  I quickly blamed Obama for it of course.  Health insurance is networked to death, there would be no way we could make that work.  He kept telling me he would fly to Utah anytime he needed to see a doctor.  It's hard for him to remember or realize how often we go to the doctor because of his issues with Dyscalculia and processing.  The thought of setting him up with an entirely new team of doctors in a far away State is unthinkable for me.  We just barely got our current team to a place of trust with each other. 

Truth is rarely easy.  The word itself is pointed, with hard edges. Truth just doesn't roll off your tongue.  It hurts to put it out there.

The truth is, he is grasping at life right now.  He feels like he's running out of time.  He is desperate to find his 'thing'; that passionate thing that gives him a reason to get up every day. College is hard for him and not working out at all and that creates even more tension.  And then of course, there's this girl!  Sam loves this girl and she kind of likes him.  She is moving to Mesa in December and worse than dying from Dyskeratosis, is losing the girl he loves.  So, Sam's all a mess this week.

Anyways, I ended up talking to him last night, with his girlfriend present, about all the reasons Arizona isn't going to happen in December.  At first he took it really hard and he fought the tears for a good 20 minutes, but then after running down a long list of all the things I admired and loved about him; his strengths, his gifts and talents, he began to see possibilities for his life here, or even in Utah.  He began to see a way to navigate his chronic health conditions and still live an endearing life of happiness and passion.  He began to see the ways he might start setting and achieving new goals. 

He also had plenty of time to yell and scream and vent and get mad and let all of his hurt and worry spill out of his head, where he often keeps it all buckled down, out of the way.  I love these moments.  I love when my kids feel so safe and validated that they allow me to witness this deep and moving pain.  It's my favorite part of motherhood by far!  The wrestle.  Amazing things happen when someone feels witnessed, loved and safe. Let's not forget how it tears at my heartstrings too. I hate that we always have to make concessions for this awful disease.

Truth is hard and demanding, but its also clarifying and restorative.  Today, he's been a new kid.  I might even use the word happy.  Today, he's been a happy kid...we are going to find a new way to lean into happiness.

Wednesday, August 29, 2018

Almost Comical

Imaging and me is always a joke.  Today was my CT Scan.  I had it done in a different city because I don't trust the Radiologists here.  I think they just keep spitting out xerox copies of past reports on my kidney scans because they read word for word, year after year.  This has been going on long enough, I wanted some fresh eyes on my kidneys.

When I arrived, they asked if I had finished my contrast...but no one told me I was suppose to drink contrast so of course that is what I reported.  The nurse said, "Oh good, we didn't want you to drink it anyways.  We are going to change things up from the way your doctor wrote the orders."

Hmmm...sounds fishy but instead of questioning her, I changed into my one size fits all, mismatched set of hospital scrubs they provided me.  I'm pretty sure the one size fits all came from the Men's, Big and Tall department.  Just for fun, I put the pants on upside down...the ankle of the scrubs, fit around my waist perfectly!!  Ha ha...of course I didn't leave the changing room like that but they were unbelievably large!!  The scrub top was just as big, so I lumbered out of the room feeling like a little school girl playing dress up, which I can't complain...It beats the pink super hero capes they give you for the yearly mammogram stuff.

So, the nurse saved me a spot on the bed of the CT scanner and invited me to lay down.  I asked how we were going to change things up and she said they were doing a more intense IV contrast that would light up my bladder as well as kidney and renal arteries.  She asked why it has taken me more than a year to get another scan and why they haven't sorted things out yet...Fabulous question!  I was hoping she would ask me that.

The short answer is...doctors are becoming lazy.  I have had two doctors and two Nephrologist in 12 months.  They all gave me the same basic answer or variation of, "You're too young for kidney problems, let's just watch it."  Meanwhile, 13 months later, I'm still losing blood and my hemoglobin and red cell count is the lowest it's ever been.  Hopefully, this new Nephrologist has his head in the game.  I had to fire one Nephrologist because he thought I was 65 years old!! He actually said, "Well, this is to be expected with someone your age."  To which I responded, "MY age?!! I'm 49 years old!  How old do you think I am?"  Just kidding, that's not why I fired him.

Funny thing though, as this radiology tech was putting in the IV and getting things going, in a bit of a whisper she said, completely out of the blue, "I think you look good with this color of hair."
I said 'Thanks' but my inside voice was saying something else... Did I start a debate unknowingly about my hair color?  Did I seem insecure about having grey hair?  Did I ask anyone's opinion about my hair?  Most people would say, "I like your hair color."  It was funny, I may have laughed out loud because she sounded so sorrowful that my hair is the color it is!  Poor Me.

Contrast is an interesting beast...There's nothing quite like feeling as though you are burning from the inside out and peeing your pants at the same time.  It's an awesome experience you don't get everyday!  It's something I'll treasure for days to come.

So, that's that.  Now I wait for the verdict in two weeks, unless of course we are going to watch me bleed out for another year.

Because that ordeal wasn't funny enough, I got the last of Shelbie's scans and tests from last week, post surgery.  Never have I ever seen a Radiologist ask a question on the bottom of his notes.  They often say things like, Please correlate these results with further testing or past tests or something like that.  I consider it more of an excuse to not be responsible if something gets missed than anything pertinent.  These last scans and tests are nearly duplicate images from all the testing over the past year and multiple scans in the past 3 months.   This time, at the end of his report, numbering all the nodules, tumors, lymph nodes etc. He flat out says, "Are you sure this patient does not have lymphoproliferative disorder?"

Lymphoproliferative disorder is cancer!  When lymphocytes infiltrate the organs and in Shelbie's case, the lungs.  What a joke.  I understand that this is complicated but I wonder how often they consider what it feels like to be the patient living with this.  It's extremely difficult to spend a week where everyone you meet is trying to stage your 'cancer' or asking you what stage you are in, after they see the images...and then to be told, you don't actually have cancer! It messes with your head in unbelievable ways.  Now a week later, we are back to yet another doctor, a cancer specializing radiologist, who is questioning our entire team!

I can't even.  It's ridiculous.  I don't even know what to do with this.  I think nothing.  I think we will do nothing for now.  We actually laughed about it this afternoon, in a sarcastic, overwhelmed sort of way but it felt good...to laugh, I mean. 

An unexpected, almost comical day today. 

Tuesday, August 28, 2018

The necessary lies

The day ebbed and flowed about like any other day.  In fact, it almost felt normal, relatively speaking.  I'm fairly certain there isn't such a thing as normal but it's a convenient word to use anyways.  The morning was a bit rocky but it smoothed out into something tolerable. 

There were the usual amounts of work, emails, clients to visit.  I reacquainted myself with the grocery store.  It feels like forever since the pantry and fridge had anything resembling real food sitting on their shelves.  I stopped in at the pharmacy for our monthly refills, exchanged friendly salutations with the Pharmacist.  Ran in to plenty of acquaintances and gave a cheerful account of "We're doing great!"  From the distance I kept,  it seemed like we were settling nicely back into the rhythm of living and breathing.  

The uneventful day gave in to the sinking sun and after work, I found myself back in the gym after a 3 month hiatus to fix my ailing wrist. 

I found a comfortable speed on the treadmill and little by little, I felt myself unfold from the previous week of tension and anxiety.  I almost remembered how to breathe again, after holding my breath for so long, waiting for what comes next.  I got lost in whatever sound filled my earbuds and put on the miles and nothing dared to cross my mind and if it tried, I ran faster and farther.  

I thought about all the lies I told today.  Things I promised my kids I would do but never did. The lies I told to the people I ran into...  "We're good."  "Things are great!"  "The kids are awesome!"  "Ya, it's been a tough week but honestly, where would we be without our trials right?"   It took absolutely no effort at all to lie.  Even the smile I faked all day was easy.

Of all the lies I told today, there was one that was completely necessary.  It was the lie I keep telling myself.  This is just a medical mistake.  A bad dream. Sometimes, I just get tired of hearing the truth over and over and I want to believe in a different story.  Live a different story.  Be a different story...so I find myself making it up as I go, setting aside the truth for something else, for now...

  

Sunday, August 26, 2018

Adrenaline Drain

I'm feeling the effects of adrenaline drain.   It always come after a stressful week.

Shelbie's been stable and even improving from a physical point of view.  Mentally, she's not in a good place.  I walk a fine line between trying to plan enough in a day to keep her mind occupied and letting her feel the fear.   I know that sounds weird but I'm learning that we have spent way too much time trying to run and hide from our truths.  Sometimes, we need to sit and stew.  It's when we sit and stew in the uncomfortable feelings that we realize what we are made of.  I want her to find her strength again, on her own.  So, this week, I will stand by and cheer her own as she tries to wrap her mind around the situation she faces. 

Things did get pretty rough earlier this evening so I made her go for a drive with me.  It helps if she can get everything out of her head...everything!!  We wandered around the country roads, talking, watching the early sunset and ran into some albino buffalo and elk. 

Upon returning home, we had to start plasma transfusions for Sam and Shelbie.  Over the past 6 weeks, since Sam had to start this treatment, we haven't been able to co-ordinate the schedule enough to do it at the same time but tonight the stars aligned.  It hit me that this is a forever thing for these kids.  Every week, they will have to infuse fresh new plasma in order to survive. 


It's odd to me how things that we have known for some time, all of a sudden seem brand new and overwhelming all over again.  Tonight was just one of those nights.  It seemed extra hard to keep each dose straight and not get them mixed up.  I'm trying to get them to take a more active role in this because I won't be around forever and I need them to know how to do this, but they aren't interested.  It is kind of tough to place two needles through your own stomach.

Not much to report today.  This week, we have a break from Salt Lake but not from hospitals.  I'll be in Physical Therapy nearly every day, meeting with my hand surgeon again, hoping to avoid another surgery and getting the long awaited CT scan on my crippled kidney. 

Saturday, August 25, 2018

The Praying Mantis

Today began way too early for me.  I was at work by 7 this morning after a long 4 hours of sleeping.  I was done at 11 AM and hurried home to get some chores caught up and start my afternoon of designing.

Okay, no judging, but I haven't mowed the back yard in over 6 weeks, maybe more.  I haven't watered it either, or weeded.  It was a wreck of a yard.  So, I tackled that first.  I loaded up the car with all the junk that has collected back there over the summer, bags of weeds, all that stuff, so I could run it to the dump.  As I was cramming in the last of the broken window screen, an enormous Praying Mantis flew on my arm and he was golden yellow in color.

Keep in mind, I have one nerve left after this week and it's debatable if I even have that!  So, I panicked, like any person with one nerve left would do.  I don't like things that fly around.  I was screaming, running in circles and basically scaring the neighbor children.  Shelbie heard me from inside the house and opened the garage door to see my arms flailing about.  Of course she couldn't see the Praying Mantis I couldn't get off my arm so it was not an impressive sight.

Image result for yellow praying mantis

I was able to compose myself...the whole ordeal went down in just a few seconds but it seemed like a lifetime really!   Shelbie scolded me for freaking out..."Don't you know that a Praying Mantis is good luck?  He's not going to hurt you!"  She picked it up off the garage floor and held it on her hand.  He was quite content to sit there.

Apparently, the little creatures are in fact, good luck.  Spiritual luck.

"Accordingly, the praying mantis symbol chooses to present itself to individuals when they have allowed their busy schedules to overrun their intuition, silencing their internal voice and throwing their equilibrium out of balance. The praying mantis always comes to us when we are internally craving peace, quiet, and calm in our lives.
The praying mantis meaning has a variety of traits: temperance, quietness, awareness, calmness, clairvoyance, patience, mindfulness and innovation. These insects are well known for their pre-strike pose, which is a popular symbol of balance and patience in and of itself.
If a praying mantis strikes too soon, its prey gets away. Because of this, it has evolved to be patient: so patient, in fact, that it will not budge unless it is 100% positive that it is the correct thing to do. This acts as a direct message to us, reminding us to contemplate our movements just as carefully and precisely.
When our timing is off, we may generate an unnecessary (and unpleasant) struggle or blow an opportunity entirely. Through stillness, awareness, and balance, we can hear and recognize the perfect moment. We must listen to the voice that speaks to us with openness, not fear. If we have patience and wait before striking, the right moment will come, and we will succeed."
This is only the second time in my life I have seen a Praying Mantis.  The first time was almost a year ago, on the eve of Sam's heart surgery; he sat outside our hotel room door. 
Long story longer...we took that as a sign to change our afternoon plans of work and find a way to balance ourselves again.
We took off to the mountains; our happy place.  It was the perfect way to end the week. 


Our traditional rock stacking- Palisades Lake

It was perfect weather today.  The smoke from all the fires hung low in the trees, but it didn't detract from the beauty. 

Why work when you can lay around looking at this all afternoon?

I found Shelbie's smile!

This view!!
It was exactly what we needed today.  We got home a little while ago and it was nice to have my house back in order, the backyard looking decent again and hopefully, our little Praying Mantis friend sticks around.  We could use more days like this. 

The Cost of Living

I've been thinking about the cost of living this week.

It's expensive to live in America.  The cost of living is high.  Everyone I know, is working just to pay for the privilege of living in this country.  We spend half the year working to pay taxes and the other half of the year working to eat and keep up a two bedroom charmer, and gas in the sub compact car.   There are so many things we need just to survive in this world.  Even the homeless are burdened and weighed down with things they deem necessary to live at the lowest level of poverty.

Whenever I visit Salt Lake, I am always struck with the visions of homelessness I see.  They have so much stuff yet they are so very poor.  There is no escaping the cost of living.

But, bigger than that is the cost of living with this disease.  I'm not talking about the cost of healthcare, though that is puzzling.  I'm not talking about the cost of driving 1000 miles a week and your two year old car has the miles of a 6 year old car.  I'm not even talking about the lost wages and underemployment that becomes the norm when faced with a disease of any kind.

I'm talking about the cost of living...all that it takes to live in a world of disease that is constantly robbing you of everything- your security, your hope, your connections.  It drains your dreams, the very thing that sustains life, some days.  Before you know it, your resources are taxed.  It's an investment that begs for attention whether you have enough to pay or not.

It's costly.  It's life changing.  It's poverty.  It's scarcity.  It even steals your home, a place of belonging in this world.  It sets you apart in isolation.  It demands it all, and more until there always feels like there's a debt to be paid.

This week, I paid attention more to the cost of living with Dyskeratosis Congenita and CVID.  These diseases have stolen the most precious of my belongings this week; a costly blow.  My daughter's shining eyes and glowing smile have given way to tears and despair. My boys have approached life a little more guarded as they witness what will surely come to them as well, sooner or later.  By all accounts, our sense of security, laughter, and hope have dwindled to startling levels of poverty.

I did hear from the Oncologist tonight.  Shelbie does not have Lymphoma.

This is where I should say things like...God is good!  Amazing news! What a blessing!! Truly an answer to prayers!

But...

She has Granuloma disease and an infiltration of lymphocytes.  In many ways, this mimics Lymphoma.  There is no promising treatment.  It will eventually infiltrate her organs and there is no way to stop that from happening and it has already begun.  Eventually, she will need oxygen in order continue to live.  That may be in a few months, or next year or in 5 years, no one can say for sure.  There are things they can do to try to slow down the process, but that would be the best case scenario, just borrowed time.

It was hard to hear that tonight.  I wanted to cry but I sacrificed my own tears in lieu of hers.  This was her broken moment, not mine.   I stood strong, as strong as any mom can stand, while she fell into me and poured out the weight of this week on my shoulder. There is not one thing I can say to her, to soften the blow.  Not one word will make it better or change the course of things now.

The cost of living is greater than ever.

I know that underneath all the layers of hurt and worry, God is still good.  It is amazing that she does what she does every day.  Her continued talents and gifts are a blessing and the fact that she is still here and beating the odds so many times before, truly is an answer to prayer.

We will pay our dues here.  It could be worse, but for now it's not, and that is a tender mercy.  This is not okay, not today and it probably won't be okay tomorrow but give us a minute and we'll be fine again, someday.  Soon.  I hope.

Thursday, August 23, 2018

Life Goes On

Today was another day of hoping to get this situation under control and I kind of think we are close though I don't want to jinx us. 

I followed up this afternoon with our primary care doc and we are avoiding inpatient and outpatient.  Shelbie is on day two of a fever.  He switched up the antibiotics and increased the Prednisone to calm down the inflammatory process that is getting ahead of us.  Of course sepsis is of concern now.  He also added a stronger ointment for the hives and we will continue with Hydroxyzine, Benedryl and Claritin.  Her incision and welts look hideous.  Her right leg, is swollen and weeping lymphatic fluid out of sores and hives that are raw.  It's just not a pretty sight.

But, the spreading of all the hives seems to have slowed significantly tonight, so I think our aggressive action will pardon us from a total rerun of two years ago. 

What a week.  Aside from the first two days of the week handling the surgery business, Wednesday and Thursday were spent in 4 hospitals, in 3 different cities.

No biopsy results yet, though they said the results would be back in 4-5 days from the surgery date.  It would be nice if we didn't have to wait through the weekend but that might be what we do.

Things are just sort of rough around here and I'm actually kind of okay with it because I have no energy to be any different right now.  We spend so much time trying to pretend that everything is fine, even when it's not.  It feels a bit liberating to just be undone but it's not fun at all to feel this way. 

Anyhow, life goes on.


So it begins...

We weren't even home three hours and Shelbie ended up in the ER. 

It was such a rough morning.  She has been in three different hospitals in three different cities in just 24 hours.  By the time the hospital in South Jordan blew three veins trying to start IV's for the bubble echoes and other tests, we were done.  I have no room to complain.  Shelbie's been through the wringer this week.  It's been awful. I don't understand how the girl is still alive if I'm being honest.

I made the decision to come home as soon as we could after all of the morning tests.  Her hives were still a thing but she kept telling me they weren't getting worse so it seemed like everything we were doing was working. 

We got home, I unpacked the car, changed into a dress, got back in the car and drove down to a nearby city to meet with some clients who have been feeling neglected this week because, obviously, I'm way behind on their project.  After my meeting, I had several missed calls from Shelbie.  The hives had spread significantly.  I got home as soon as I could, changed again and ran her up to the hospital. 

This is almost identical to the situation we found ourselves in two years ago.  I can't even really call them hives.  They are giant welts, that spread into each other.  Not only that, her incision is infected and there is an abscess at one end.  I am honestly beside myself.  The ER was slammed tonight and one woman was slamming her body against our shared wall and screaming at the top of her lungs, police were coming; it was the last thing I needed.  I could tell from her screaming, they were trying to transport her to mental hospital and she was refusing to go.  Seriously, I was sitting there thinking...'Girl, just go!  I'll go!  Take me! I'd give anything for a time out and no responsibilities!'  I know, it's a terrible thing to think but it's been that sort of week.

The doc wanted to admit her but Shelbie flat out refused.  I can't say I blame her.  So, long story short, they did some IV steroids and antibiotics and we will follow up with our family doc as soon as the clinic opens.  I don't think inpatient makes any sense but outpatient IV therapy does.  We'll just have to see.  She is on so many histamine blockers and steroids and nothing is slowing this down.

On the way home, the Pulmonology clinic called to let me know Shelbie doesn't have blood clots in her lungs.  Shocker.   I think sarcasm should be considered a virtuous quality because when everything else fails, sarcasm is still going strong!  I've made it an art, actually.   I can be so sarcastic yet sound so endearing and sincere.  When the nurse practitioner told me, it went sort of like this...

"What? NO!!!  She doesn't have blood clots in her lungs?  I can hardly believe that!  That's wonderful news!"   And then they get all happy with you and a good time is had by all!  I had a hard eye roll to go with it too, but they couldn't hear that part.   I knew all along she didn't have blood clots in her lungs.

Anyways...that's where things stand.  I hope we can avoid inpatient but that remains to be seen. 


Tuesday, August 21, 2018

Read Between the Lines

Today has not been a good day. 

We had pulmonology clinic first thing this morning.  Shelbie had such a great night, pain has been manageable and things looked good from a surgery standpoint so we decided we would go home right after clinic.

But here we sit...still in Utah. 

The Pulmonologist, Respiratory therapist and PA were not comfortable with Shelbie's lung function and blood pressure which has been really low.   After they all met, they came to the odd conclusion that Shelbie had blood clots in her lungs.  I questioned that thought process.  The lung function has been lousy since she failed the PFT tests last week so it is not a new onset at all.   She's been struggling to get air for months and months, it's just that now we know exactly how bad it is.  Blood clots in the lungs would be painful and she is not in pain when she breathes.  I brought this up but I was discounted. 

In fact, I said, "Doesn't it just make sense that the growing granulomas, AVM's and other scar tissue has caught up to her and that is causing the problem?"

"Why don't we not jump to conclusions?"  They responded. 

So, obviously, I just let it go but I'm still puzzled why stating the obvious, is jumping to conclusions but making the assumption she has blood clots is not?  I was a bit bugged but then became really irritated when they added that it's either blood clots or heart failure!!  Talk about the high jump to conclusions.  I could possibly be sold on the idea that her heart is next to go, but still, her heart rate is within normal ranges so that doesn't seem likely.  It could be that the hole in her heart is getting bigger or creating problems but...I don't know.

Anyways, they rushed around trying to get her in for a CT Scan of her lungs to rule out blood clots. They couldn't use the scans we've been collecting already up to this point because they needed to use special contrast.  Tomorrow morning, she will have some cardiac testing, echocardiograms etc.  and in two weeks, we start formal cardiac work up.

The radiology tech was so cryptic for the CT Scan.  She said, "Okay, you are going to need to read between the lines.  If I come back in and say, 'Just wait for a minute', then that means the Radiologist found something life threatening and we won't let you go.  If I come in and say, 'Have a good day.' then it means you can go."   (they let her go)

HUH?!! 

This day just won't end. 

To top it off, her incision is angry, inflamed and she is covered in raised welts and hives...exactly like last time that put her in the hospital for two weeks.  I called the surgeon's office but he was in a long surgery so instead of waiting, I went to the pharmacy and bought every kind of histamine blocker I could find.  So, she's on Ranitidine, Claritin, Benedryl and Hydrocortisone cream.  It just keeps spreading.  The nurse finally called me back and we just need to keep doing what I'm doing.

It's been so disheartening to deal with all of these unexpected issues.  I suppose we are dealing with things better tonight.  Maybe a good sleep will help.  If I can't get these welts to stop spreading, then we won't be able to come home anytime soon, so I'm really hoping things turn around tonight. 

I guess I shouldn't be surprised.  We know her lungs are not in good shape, it's just facing the reality that isn't fun.  We'll be fine.  We need to find our center again and wait and see what happens and that is what we will do, instead of jumping to conclusions and reading between the lines.

Monday, August 20, 2018

Post Op

The day kicked off way too early after a long day and no sleep.  

Shelbie had awesome nurses as usual.  We were calm but anxious to see our surgeon and get the final word on the PET scan from Friday.  He came in after all the other check in stuff was done and his first words to us left my heart in the bottom of my gut. 

"Getting a PET scan was the best decision and there's no doubt that surgery has to happen. However..."

And then, he pulled up the PET scan.  The large red spot is an extremely "HOT" hypermetabolic enlarged lymph node.  That has been the target everyone is uptight about.  You can see, it is pressing up against a major artery and deep in her abdominal cavity with lots of important things in the way.  It was perfect in every way to biopsy because it is so large and so much activity that, by all standards indicates cancer.  Regular, normal lymph nodes do not show like this on a PET scan. Picture red spots like that all over her body- several in her lungs, heart, aorta, ovary, just to name a few. 

Just above that large red spot is a smaller red spot, shown with an arrow.  It is smaller and not as deep.  This is a new tumor that didn't show up on the CT scan two weeks ago, or the PET scan 3 months ago!  This ups the ante on things but the good news is, that we decided to take out that one, instead of the original one they had selected.  It made everything easier!  The incision isn't as big, he had to go deep but not as deep and it wasn't near any major arteries! 



 I needed to see this this morning.  I've questioned my ability to feel the spirit as of late.  I'm just so tired of life and exhausted and everything feels hard.  If I had not have spoken up last week and insisted on another PET scan before committing, they wouldn't have found all these new issues and Shelbie would have gone through a much harder procedure.

Once he had her opened up, he found another very large growth, beside this new one so he removed that as well, along with a lot of surrounding tissue.   The second one was between the size of a grape and a golf  ball.   The smaller one shown above, with the arrow, was just larger than a large grape.

Our surgeon took some extra measures to have radiology pin point the exact place where he needed to go and that meant he didn't have to dig around for it.  The surgery went well, all things considered.
It's been a little unnerving as different specialties have seen the most recent scans, a few people have already started 'staging' her 'cancer'.   I don't understand that.  I don't understand if they already know for certain and they won't share that with us until Pathology weighs in, or if they are just making early assumptions.  At any rate, in my effort to remain open to without judgement, it's messing with my head.
 The obligatory pictures while we wait and as they wheel her away.


Right after they kicked me out of pre-op, I went up to the library to see if there were any CVID or Lymphoma trials available that we could look at as treatment options.  That was a huge mistake.  I walked in and couldn't hold back the tears.  I sat down at a computer and hid my face in the corner until I could collect myself then hurried out of there.

On the elevator back down to the surgical waiting room, I rode with Ben Tanner, the Executive Director of Huntsman.  I worked with him on the Huntsman Satellite clinic back home that I designed.  He gave us some special attention when Shelbie was admitted two years ago with her last biopsy.  He actually remembered me.  It was weird that two years later, we cross paths again, under similar circumstances.  Anyways, visiting with him allowed me to get my head back in the game and distract me during the wait.

Otherwise, this was my view for the morning with about 30 of my new closest friends.

Insurance denied an overnight stay but they want us to stick around for a couple of days so we are in a hotel.  Tomorrow, we will meet with lung doctors to determine what to do with her lung diffusion problems due to all the granulomas, AVM's and scarring in her lungs.   Pathology will be back in 4-5 days.

I'm really trying not to give meaning and judgement to anything and just wait until we have the facts and just let it unfold on God's terms. That's not easy!!  It would be easy however, to go straight to cancer in my head, and quite honestly by all standards, this looks like cancer. Cancer is the easy answer in this situation.  Advancing Granuloma disease is not a good scenario...but we will wait. It will be a messy wait, requiring lots of energy.

The take away today is that we are so blessed with the way things went.  We were lead along by a loving Heavenly Father, without a doubt.

Sunday, August 19, 2018

Things I can't do

There are many things I can't do...and the list is long.

I can't wiggle my ears. 

I can't touch my tongue to my nose.

I can't sneeze with my eyes open.

Also.

I can't work the TV in my house.  Apparently, it's designed for people under age 35 to operate.

I can't seem to keep my backyard, that is the size of a postage stamp, watered and mowed.

I can't seem to keep anything alive...well, I'm alright when it comes to dogs and humans but not plants.

I can't figure out how to get to sleep at a decent time and sleep through the night.

I can't seem to focus or pay attention for more than 5 minutes anymore.

And then...things get more complicated. 

I can't handle stress like I use to.

I can't live in yesterday.

I can't understand why worrying about tomorrow doesn't actually prevent tomorrow's problems from happening.

I can't stop my heart from breaking or my head from getting ahead of myself.

But here's the deal...

I can't give up on God. 

I've tried.  I've begged and pleaded for answers that never came then shook my fist in the air, as if Heaven was still paying attention to my adult sized temper tantrum.  I gave him the silent treatment once...maybe more than once; even boldly saying, "I have nothing to say to you."  The cold shoulder only worked for a hot minute.

I can't do it; I can't give up on God.  We've come too far together to give up now. 

I believe in His goodness.  His mercy.  His care.  I believe that he will keep showing up, even when I'm late.  I believe that wherever I am, He'll be there too.  I believe He has a plan, a solution, a remedy and a way.  I believe he will move Heaven and Earth for me if I ask and wait and watch. I believe I can expect miracles and unexpected things.  I may not always understand or appreciate His ways but eventually, I get it.  I believe in his patience and love and that He'll let me try again no matter how many times I miss the mark.

The plan that was suppose to unfold so simply this weekend has not.  The surgeon hasn't called with PET scan reports and levels of metabolic activity like I wanted.  I imagine he forgot what our plan was.  I'm guessing since the PET scan was so late in the day on a Friday, the Radiologist was likely out of the building before the test was even complete.  In less than 36 hours, Shelbie will be in surgery and I wanted answers before that happened.  I wanted to know that this tumor, in this spot, at this time was the right thing to do.  I wanted scientific facts to determine the proper course of action.

So, now what? 

Well, of course this is to be expected. Could I possibly expect anything less than hard?  Anything less than hard would be easy and I believe we are far beyond easy anymore.

 It's called Faith I guess; the real reason I can't seem to give up on God. All we can do now, is move ahead with the plan that was made and wait and see how it all unfolds...and it will unfold according to a higher plan and I have no idea what that is going to look like.  I'm actually going to be waiting and wondering just like every stranger reading this, waiting to see what happens next.  I'm a spectator in my own life!  That's a weird realization...a little existential perhaps.

Oh, one more thing I can't do?

I can't wait to see what happens next in this chronic life of mine. 


Saturday, August 18, 2018

Another PET

We made it through the PET scan yesterday. It was not easy for Shelbie. We worked so hard all week to keep our heads in a good place and not panic or worry.   I guess at some point, you have to face the reality of the situation.  PET scans sort of ensure that that happens naturally.

I'm not sure what's harder, watching Shelbie struggle and suffer with all of this or worrying about what is coming.  So, I'm back to the great internal struggle of life...My head knows that we are in a serious situation.  My heart should know that God has got this covered but knowing, feeling and doing, all seem to have their own agenda.  It is taking a lot of energy and effort to stay in a place of faith, not fear.  All of these feelings have wrestled one another through one long night, under a dark sky, with just enough light from the moon. 

I was actually doing pretty good yesterday.  I really felt stable and reassured, even when Shelbie bounced between anger, fear and sadness.  I had to field a lot of calls yesterday to get all the Pre-op stuff done so that helped to keep my head in a productive state. 

Surgery is scheduled for Monday morning at 7:30 AM.  Insurance has denied an overnight stay which is irritating.  I discussed with the nurse, and she reviewed the complications from surgery two years ago and the fact that less than 24 hours afterwards, Shelbie was admitted to the hospital here at home for a week and then transferred to Huntsman for another week.  In light of all of that, they have asked if we would stay at the University of Utah Hospital Guest House for two days so they can monitor her in case she has to be readmitted.  I guess that's what we will plan on.

Tuesday, we meet with the Pulmonologist to find out if they will be starting Shelbie on medication for her deteriorating lungs, or supplemental oxygen.

Driving home last night was awful!! Between all the fires in the area and a massive wind storm, this is what we faced for a lot of the way.  I was weary by the time we got home just before 11:00 last night.

 Today is proving to be more difficult than I anticipated.  I just have so much to do in order to be ready for next week.

Spencer threw a wrench in my mental state.  Last month, when he was in the 11th hour for looking for a job, he was asked to do a project with a large production company but they said they couldn't pay him.  He volunteered and they loved him.  They started him out as a Gaffer, then moved him to pull focus for the cameraman.  That job requires that you anticipate where the cameraman is going and make sure you are constantly focusing the shot on a computer connected to the camera.  It's all beyond my realm of understanding.

Anyways, they were so happy with him they gave his name to another producer who then had him pull focus for a film about suicide and mental illness that will debut at the Sundance Film Festival this Fall.  They too were extremely happy with his work.  Since both of those volunteer projects, both companies have offered him paid projects.

Two days ago, the first company called and asked if Spencer would be the Director of Productions for a 3 week project on the West Coast of Mexico.  He will be shooting for the surfing and motorcycle company called Deus out of Australia.  For 3 weeks, they will be road tripping from LA down the Mexican coast with a production team of 30 people and Spencer will be the main camera man and director of the entire production.   This will be an all expense paid trip but a small payment.

I'm excited for this opportunity for Spencer.  He has definitely worked hard and deserves this break.  The only problem is, his contract runs out on his apartment September 1.  His new apartment won't be ready to move into until next week but Spencer will be gone from Monday until the second week in September.  He has today only, to move out and clean the apartment.  And...there's the little problem that Spencer has C-Diff again!! He has been so sick for two weeks.  There's no way not going to Mexico is an option so, once again, my mamma heart is a little worried.  He says the company is taking care of travel insurance but who knows.

The next few days will require a great amount of faith and trust as we do some really hard things.

But, today.  We need to get through today first.  I am waiting anxiously for the PET results.

Wednesday, August 15, 2018

Creative destruction

Did you know that creation resides in the very same part of the brain that trauma does?   So, you don't have to travel far in your mind, to create something different from a traumatic experience that threatens to destroy you.

Last week, knowing we would have a week of anxious waiting, I made some calculated decisions; we would spend the week in creation; a week of creativity and access a part of our brains that would keep us from dwelling on a hard reality.   What I neglected to calculate though, was the time it would take to make this happen for Shelbie.  It has become an additional part time job which means I work my regular jobs from about 7:00 at night until the very wee hours of the morning, sleep for 3 hours or so, get up at 5:30 or 6 and work a few more hours until Shelbie is up and ready for more distraction. I'm still working about 9 hours in addition to driving Shelbie to photo shoots every day and creating things with her, and physical therapy for me.  I am tired.

I found 30 minutes this afternoon that I could take a power nap and I napped hard!  So hard in fact, the phone rang half way into it, and I woke up completely disoriented about where I was, what day it was and even what year I was in!!  It was awesome and miserable at the same time!  Ha ha.

Here is what we did for today...We did some serious creating, not some little putzy crafts!!  We completely redid her bedroom.

Here is the 'Before' picture of her bedroom from about 5 years ago.

The before bedroom
 And, her bedroom after a long day!

 Isn't it beautiful?!!  I hand painted this forest scene!  Just kidding, I didn't.  It's wallpaper from Sweden.  I did hang each of the 9 panels, matching every little branch of those trees! I couldn't have done it without Shelbie.  She was a big help!  I have only hung wallpaper two other times in the past 15 years so I wasn't sure I could pull this off, but we did it!!

Prior to hanging the wallpaper, Shelbie painted the walls this dark charcoal grey.  I have always had a policy that my kids can do whatever they want to their rooms without any question or hassle from me.  I've seen it all! Spencer's bedroom walls are wheat-pasted in newspaper we collected when we were in New York and then in graffiti font across the entire wall it says, "Hope is not lost"  He did it all himself.  Sam's room is covered in doodles and graffiti.

Anyways...back to Shelbie's room.  Here it is all done up.  It's so beautiful.  I even love the actual cow skull we found awhile ago.  The nighttime lighting makes the paper look extra pink but it really isn't that pink.  The comforter is a blush pink, new gold night stands and I even installed a brand new modern light...not shown.  Apparently, I'm an electrician now too!

I'm so happy we got it done.  It will be a beautiful room for her to recuperate in when I get her home from surgery next week.

Tomorrow, I will post our other creative ventures!

We were suppose to be in Salt Lake tonight for Spencer's Cardiology appointment early tomorrow morning but there has been an unexpected turn of events for that young man and we had to cancel it.  So, that saved me an extra day down there.  We will head out tomorrow night instead or super early on Friday, depending on how dead I feel tomorrow after I get done with work.

I will write more about Spencer's new complicated life tomorrow.

Tuesday, August 14, 2018

Family Shenanigans

Yesterday was Shelbie's birthday!  26 years...it seems impossible that I have a 26 year old.  Ugh.

I'm still look around for an adult every single day to help me but then I realize that by some twist of sick fate, I am the adult!  I hardly seem like the best candidate to be a mom, I still feel like I'm an awkward 14 year old. 

At any rate...the weekend was incredibly difficult.  It's been a long time since we felt such blows.  Shelbie struggled every minute of every day and I was worried about how her birthday was going to turn out.  Spencer made it home to help celebrate and Sam arrived at about the same time as Spencer, from his week long trip to Oregon.  It was a huge blessing for them to be home.  They are Shelbie's 'Disco Ball' of fun!  The whole day turned around.

We didn't do anything special.  I worked my tail off on Monday, the boys took Shelbie in to Idaho Falls to buy a new camera.  Her camera broke on Saturday during a photo shoot.  Thankfully, it was in the last 10 minutes of the photo shoot.  Cameras have a shutter life.  You can get roughly 75,000 - 100,000 shutter clicks before it gives out.  Shelbie had 177,000 shutter clicks on her 2 year old camera!!  Just think of all the moments that girl has captured in two years?  It's amazing to consider.  It's also staggering what a new camera of her quality costs...Over $2000.  She had some savings and drained her bank account but she's back in business.

We had dinner in Idaho Falls with my nephew and his wife and came home to eat cake and watch a movie.  Pretty low key but it kept Shelbie's mind occupied.  It was such a fun night watching the kids relax and laugh.  I've decided that is my favorite thing. 

My other favorite thing today, was talking to Sam.  I have this amazing relationship with my kids and we have the most candid, deep talks.  This afternoon, he was laying on my bed and I was on the computer trying to finish up some drawings and he said, "Mom, hypothetically, if I obey and honor you does that mean I will actually live a long time on earth or does that commandment mean something else?"

"Sam, yes it does.  If you obey my every word, you will be immortal, so might I suggest you go clean your room and bring me a Diet Coke."  He did not find the humor in that!  But seriously, it was a 45 minute conversation that lead to so many other interesting gospel discussions.  I'm never quite sure what Sam is thinking about, let alone if he's even concerned with anything religious.  He was admonished in a blessing he received a few years ago, that he was to honor and obey his parents and he would live a long time. 

It was a serious conversation and I know that Sam is stuck right now.  He is worried about his future and there's a girl involved...With Shelbie's upcoming trial, he is a little anxious as well, because he seems to be moving in the same direction Shelbie is, when it comes to health issues.  Sam has a tender heart and is trying to live bravely and boldly without worrying about what the future holds.  I can't imagine how hard it really is for these kids, to watch one another suffer.

Well, here are some  pictures from Shelbie's birthday.

Shelbie's birthday cake- I tried a naked cake this time.  The layers were separated with a lemon curd and raspberry filling.

This might be my favorite picture of all time.  I want to blow this up larger than life and hang it in my living room.  These kids have learned to laugh in the face of overwhelming sadness and I love this most about them. 

It took 20 minutes to get this picture because they didn't want to stop goofing around. 

I can't imagine my life could be any better than this...if was a perfect evening.

Thursday, August 9, 2018

The Day After

A day later, we have managed to keep breathing...figuratively and literally.

Things feel better today, in a odd sort of way.  Shelbie has been in a pretty decent mood all day.  I asked her how she managed that and she said she just feels numb.  Sometimes, numb is okay. I'm a little grateful for the week we have to let the reality settle in.  I am the kind of person who needs pondering time in order to make sense of it all.

"You can't be brave if you've only had wonderful things happen to you."  Mary Tyler Moore

I have had so many opportunities to practice being brave and I never seem to pull that off very well.  This morning, I rededicated myself to the idea of bravery.  The more I thought about what that meant, it really only boils down to one thing...trusting in Heavenly Father; being brave enough to just let go of how you insist life should be and accept what is.   There isn't a huge laundry list of line items that require bravery and courage, just one simple item...

Put your hope, your courage, your faith, your bravery, your kids, yourself...everything in the hands of God and leave it there.  (Leaving it there takes strength)

I don't know why I can't just do that as easily as it sounds.  He has seriously done nothing to deserve such mistrust but half the time, I treat him like an irresponsible pre-teen who we expect to mess up.  When you think of God in this way, it's ridiculous that any of us struggle, with anything!

Anyways, I don't want to dwell on the idea too much because surely, a huge test is going to land in my lap this week to see if I really mean what I say so I need to keep this enlightening moment on the DL!!

So, we have some great things to look forward to over the next few days.

I have this amazing client right now and he has entrusted me to several projects he has going.  He drove me up to the site of his new cabin earlier this week and it was breathtaking.  While they wait to get the cabin built, he has made a bunkhouse out of a shipping container!!  He was kind enough to let me look around and it was like Heaven!!  My dream of all dreams is to live in a shipping container.  I seriously can't think of a better home.   When I was talking to Spencer later that same evening, I told him how excited I was to see it in person.  We got to scheming and talking and planning.  He is running with my idea and maybe it actually could be a reality!!  So, that's kind of exciting to plan out a home with him.

Sam gets home from Oregon this weekend.  I miss that kid.  He's been visiting his girlfriend's family.   On Monday night, he texted me at 3A.M. and said, "Hey mom, I'm just laying here thinking about life.  I was thinking about you.  I know how nervous you were to let me go on this trip.  You always let me do things even tho they stress you out. Anyways, I'm sorry it's late.  I love you even though I don't tell you enough."  I am looking forward to having him home for just a few more weeks before he moves out to an apartment with his friends on campus.  I so appreciated his sweet text message.

Monday is Shelbie's birthday!!  I try to give my kids an experience for their birthday instead of stuff.  Shelbie's bedroom has been kind of an outdated design from her late teens.  I am helping her with a bedroom makeover, so this weekend, we are going to paint her walls.  We ordered a wallpaper mural and while we were in Utah found some bedside tables, new bedding and I'm going to make her a headboard and actually buy a bed frame so she doesn't have to sleep on the floor anymore!!  (No comments on that)

We have a lot to look forward to and that is the general direction I think we are going over the next couple of days.

Wednesday, August 8, 2018

The Beauty of Ruin

This beautiful, man made structure of majestic architecture, was built in the Land's End District near San Francisco in 1896.  It must have been stunning to see in person.  It is called the Sutro Baths; a privately owned, saltwater swimming pool and bath house on the edge of the Pacific Ocean.

Image result for sutro baths san francisco

Sadly, it burned to the ground in June of 1966.  Today, the Sutro Baths look like this.

Of all the pictures I took and places we visited last week, this was my favorite.  The sun was nearly set and the 'blue' hour was upon us.  Just a few people mingled on the beach.  We walked down to the edge of the ruins, still high above the beach below.  Our legs dangled underneath us as we teetered on the concrete wall.  The waves rolled onto the beach, steeping the sand in it's salty, watery serving of sea. Everything about this place was a paradox of beauty.  A testament to me that God does make beauty out of ashes, in a way that only God himself can do, and even more beautiful than anything man made. 

Today, the waves of sadness rolled in as a rising tide. We stood in another hospital room, feeling our world start to crumble.  I caught her tears with my broken heart and open hands, pleading for words to turn this ruin into beauty.  

First, a last minute, pulmonary function test.  It was much different than I have ever known it to be and took longer than usual.  I assumed we would get the results with the upcoming Pulmonology visit in a few weeks but the news wasn't good and he gave us the results within minutes.  Shelbie has lost about 75% of her lung's capacity to exchange gases.  The tumors and granulomas have begun to scar her lungs, thickening the tissue and the ability to move oxygen in the way it is suppose to move.  The official diagnosis is Interstitial Lung Disease.  They gave her breathing treatments but there was little change in her lung capacity.  I don't know what happens next but it blindsided us. 

We finished there, just in time to get up to the Surgical Clinic for the consultation on the upcoming biopsy.  This surgeon is the senior most surgeon at the University Hospital and Huntsman Cancer Center.  He was blown away by the complex health issues Shelbie is living with.  He showed us the CT scan from July and compared them to PET scan in January of 2016. He showed us the enlarged lymph nodes and tumors that are in question.  He and our doctor had decided which one he dared to biopsy.  It is in the very lowest part of her pelvis and extremely deep.  In 2016, the lymph node showed up as barely a spec on the monitor.  Last month it was the size of a large grape on the monitor but in reality, it's size is much larger even than that. The 'small' one they removed two years ago, was actually the size of a golf ball and this one is measuring larger than that one had ever shown up on the monitor.  

We talked a little, he gave us our options.  His hope was that Interventional Radiology would be able to slide a thin needle in and extract a core of tissue.  He left the room for a few minutes to visit with IR and get their opinion.  Several minutes later, he returned and they are not willing to go near any of the tumors.  So, our only option is to cut her open.  He reiterated several times how risky and serious this surgery will be.  The incision will be over 6" long.  He will have to move all of her muscles, ligaments, organs etc from the right side, over so he can get to the lymph node in question.  It is sitting right on some major arteries.  He said, "I'm willing to do this.  I'm familiar with the incision but you need to prepare yourself for this surgery.  It's BIG but let's get it done." 

Everyone was in agreement and it was decided that she would be cut open and we would face this risky surgery and hope for the best. 

I'm not sure if it was panic or shock or the spirit but I couldn't go through with this.  I wanted to call the whole thing off and just let it be whatever it is.  I said, "Wait.  What if this isn't hypermetabolic?  What if this isn't even 'hot' and we get it out and it's just an enlarged lymph node for whatever reason?  Then what?  Then we have to open her back up and go after the ones in her lungs or around her heart?  What then? And then we've removed a lymph node she has to have  for that struggling lymph fluid" 

So, a little back story...The PET scan she had in April was messed up because they used the wrong tracer.  Instead of using the tracer for Lymphoma, they used the tracer for Carcinoid Syndrome, a completely different kind of cancer.  Even though it showed startling levels of metabolic activity in these lymph nodes and granuloma tumors, they won't use that test for diagnostics...so that is the big problem.  A plain CT that she had 3 months later doesn't show which areas are "HOT" or in other words, considered cancer because of the metabolic activity.  It only shows the enlarged size. 

The doctor was a little surprised that I had blurted that out but he agreed with me.  "You're right!  You are absolutely right.  We have one shot to reach our target and we can't miss it.  Let's redo the PET scan and measure the metabolic rate of these areas.  If it's 'hot' we go after it.  If it's not, we meet with your oncologist and decide the next best one to go after.  Honestly, you better pray it's hot because if I have to go to any of the other areas..."  It's dangerous.  That's what it is.  Risky and Dangerous and life threatening. 

We could do nothing.  We could just watch these things continue to grow.  Either they are granulomas or they are lymphomas and the only way we will be able to tell is with a biopsy.  If they are cancer and we do nothing, she will certainly die.  She has lost 24 pounds in just over 2 months.  If they are granulomas, there is nothing they can do to stop them but some chemotherapy drugs will slow their growth and give her more time but her lungs are in much worse shape than anyone realized due to these tumors that have sat in there for 3 years now.  Honestly, a granuloma diagnosis is the worse scenario.  If we want to treat her, we have to do this surgery so we know what we are dealing with. 

This has been by far the hardest thing I have had to face.  There are no easy answers or solutions and without a doubt I am out of my league.  This has to be completely determined with Faith.  We went around and around, visiting various scenarios, weighing the pros and cons.  The other complex part is that her right leg is already over 3" larger than her left in diameter because she is not able to move lymphatic fluid properly.  Taking out that lymph node that is so huge is going to aggravate an already complicated situation.  

There I sat, trying to look brave and strong and capable; with a Faith that no mortal could possibly possess.   Shelbie looking to me with tears streaming down what looked like her little 5 year old face, to make the decision on how we move ahead.  My Wasband looking at me to make the decision he didn't dare to take responsibility for and the surgeon saying, "Mom?  I'll do whatever you think is best."  I was pleading for Heavenly Father and what Angels I was hoping stood by, for an answer. A clear and certain answer but nothing came.  I recognized that nothingness feeling.  I've felt it before. 

I stood in a ruined mess of mortality.  I heard in my mind the question Shelbie asked on the drive down...Am I God's mistake?  With every heartfelt pleading for God to just answer me...he gently said, "It doesn't matter what you decide, trust me."  So, not with renewed faith, but rather my thin and frayed faith, I said that I want a PET scan first.  If the target is hypermetabolic, we operate.  If it's not, I will decide what we do next.  

With confidence, the surgeon said, "I would have made the same decision.  To make sure you don't spend more time with this hanging over you than necessary, I will schedule surgery as soon after the PET scan as possible.  If we cancel the surgery, it's not a big deal to me but it's important we have it scheduled."

Shelbie's PET scan will be next Friday with surgery to follow on Monday- if it is in fact, hypermetabolic...By the way, everyone thinks this is the right one to go after but me, I'm not sure I have made that clear.   

It's a hard day but we are going to move ahead with faith and watch this unfold.  I mean, when I'm not freaking out, it is an interesting way to live and actually quite fascinating to see the works of a merciful and loving Father in Heaven.  

Tuesday, August 7, 2018

In a blink

Sometimes, all it takes for life to change, is a blink.  A fraction of a moment and the whole scene changes.  What is, becomes a, once was.

There's been an angst in the air, undertows of change.  I'm not sure what that is but I feel it coming. 

I had a lot of time to think over the past week, clear out a little space in my head to breathe.  I don't venture into my head very often, if at all.  Like a bulldozer, I just keep moving on through, pushing aside what isn't urgent, whether it's important or not.

So, in the blink of an eye, I took a plunge and registered for school...in Alexandria, Virginia.  It all happened slowly at first...but then all at once, before I even realized what I had done, I received a scholarship, paid tuition and class starts on Monday.

I scraped together a little hope, some extra faith, a lot a prayer and now, I'm headed in a new direction into the field of Health and Wellness.  I am going to be focusing on functional medicine, not making symptoms the problem like we are so accustomed to.  I know it seems like I just decided today but I have been studying already for months and months with countless hours of research.  The idea of school has been in the back of my mind and it's taken a lot of time to find a program that I believe in.  I'm sort of creating my own niche but in a nutshell, I am combining biology and nutrition to work with people struggling with depression, anxiety, addiction, eating disorders from anorexia to overeating, MS and possibly helping people with cancer.

I'm not giving up on design.  I love being a space planner.  My job is fun to me, even energizing.  I love creating and seeing a plan on paper come to life.  I love helping people, listening and empowering them and creating homes and businesses that bring peace and joy to people.  This new adventure is something I will do in addition to design.

It feels big and scary.   

Monday, August 6, 2018

Therapy

Today I had my first Occupational Therapy appointment.  I had no idea what to expect.  It was interesting and sad. 

I am not acquainted with the therapist but he is a member of the same church as me and I believe he is a Bishop or in a Bishopric.  He asked me what kinds of things I need to do with my hand.  I told him first and foremost, I need to be able to play the organ.    When he asked me, I had no idea he was a Mormon but I soon found out. 

He said, "Oh, an organ player.  Of course you can't play the organ with your hand like this.  I bet your Bishop is pretty worried about your hand?"

"Well," I said, "I don't believe he is.  Why would he be worried?"
"You have no idea how much a Bishop protects his organists do you?"  He said with a grin.

Ha ha...I guess we are few and far between at times.   I feel like I'm in a bigger mess than I thought but he is sure he can get things working again.  I have a lot of nerve damage.  One of the things I had to do was pick up a handful of beans from a bin and then turn my hand over and let them spill out into another bin.  That was a disaster.  My fingers were trembling and unable to perform that task.  The Therapist pointed out that that is why I couldn't hit the right notes in the run of notes yesterday at church. 

They are also trying to desensitize the rawness of the nerves from having one of them cut apart during surgery.  That treatment is called Fluidotherapy.  They put my hand in this enclosed box that is filled with ground up corn cobs.  It looks like ground wheat and they heat it up to 115 degrees and a fan blows the fine corn cobs all around.  While it's doing that, I have to just keep grasping at handfuls of corn cob.  The fine mixture hitting my arm is painful just because of those darn nerves being so messed up.  Anyways, it did feel good-ish and was pretty interesting.

I have hope this will work with enough time.  Fingers crossed.

Sunday, August 5, 2018

Vacation Time




We made it home from our winter vacation in July!

Somehow, I missed the memo that winter is July and August in San Francisco.  It was freezing the entire time.  So cold, we had to buy warmer clothes because we were dressed for a heat wave.  Instead, it was a cold snap.  Mid 50's were the high, with a brisk wind.

This was by far, one of the best experiences we have had in so long.  I think the one thing that made all the difference was that we didn't have any expectations.  We promised each other we would be laid back and let each day unfold.  Each evening, we talked about the must see/do for the following day and that was as far as we planned.  None of us were allowed to say NO.  Which meant...

We did things we would have never done.  We watched the Pelicans dine on an ocean buffet at sunset.  We fed the homeless.  Found ourselves in a back alley with a Hispanic gang.  We bought lunch for a man who spent 20 years in a Federal Prison.  We watched Sam do a back flip at every landmark and activity we did. We ran on the Golden Gate Bridge. We stacked rocks on every beach.  We rode on a double decker bus with bitterly cold winds in our face.  We laughed and laughed.  We talked and talked.

When things didn't go as planned, we leaned into it, and kept a perspective and things did go wrong plenty of times.  Shelbie had a few seizures, Sam had some vision issues, at one point, someone said, "We are like a bunch of escapees from a nursing home." It was true, we hobbled along.  Our toilet broke in our hotel room.  They tried for one entire day to get it fixed but it took a second day so we had to keep running down to the lobby to use the public bathroom.  I think the manager was caught off guard that we didn't whine and complain but rather, laughed and waved to her as we passed the front desk on our way to the bathroom at 2 in the morning.

Sam at the Salt Flats PC: Spencer

Me at the Salt Flats PC: Spencer

Sam doing a handstand on my hand!! 

Monterey Bay. We went to the awesome aquarium and played on the beach. 
The next stop was Santa Cruz and the Mystery Spot.  The Mystery Spot is a place up in the mountains where gravity is all messed up.  This place just about killed us all!  It messes with your brain and equilibrium and blood pressure and the boys' pacemakers.  We all just about puked in the middle of this cabin.  Even though it looks like we are standing at an angle, everything was perfectly level. The boys could stand on the side of the wall without holding on to anything and just balanced there.


Our tour guide wanted this picture.  Sam is actually not at all in danger of falling, it just looks like it.  
I was holding on to Sam and Shelbie for dear life because we felt like we were going to topple into the wall. 



frIt was a weird place but fun. 
From the Mystery Spot, we drove into Santa Cruz.  Another freezing cold day but we hung out on the beach anyways.  We flew little kites, stacked rocks, and played on the board walk.

I use to do a lot of weaving as a kid so I thought it would be fun to weave something at every beach with whatever natural materials were available to use.  This was my second one- kelp, driftwood and feathers. 


My kids said I had to get a tattoo.  Mostly because they know how much I hate the idea of tattoos.  I guess I just have never loved something so much, I felt compelled to ink it into my skin.  Since this was a vacation of YES, not saying No, I sat for a fake tattoo.  I had to close my eyes while they chose the subject matter.  Of course, they picked the dumbest thing- a fat panda bear but it was funny!!  It was right after that, they dragged me onto a roller coaster!


 We tried to be at a beach for each sunset because my kids all love taking pictures.  Santa Cruz has this beautiful lighthouse and as we watched the sailboats and sun set, Shelbie's eyes filled up with tears and said, "This is one of those moments I hope I never forget."  It was a moment when we were filled with so much love and gratitude for each other.  Honestly, we could have just come home and it would have been perfect!

Our last two days were spent in San Francisco.  I did not want to drive so I bought a bus pass that allowed us to get on and get off at 34 different places around the city and even went over the Golden Gate Bridge to Sausalito.   It was about 53 degrees and the wind was wicked as we spent the day on the double decker bus.  San Francisco has some interesting history.  It seems like they just keep rebuilding the city from all the earthquakes. 

 One of the kids' must see things, was called Clarion Alley.  It is located in the Mission District which I believe is the Artsy area.  It's just one long back alley of graffiti and street art.   The streets were lined with questionable people selling what appeared to be stolen items.  The stuff wasn't in stores, just literally laying on the sidewalk, like a big yard sale.  I called them 'Entrepreneurs'.  Car theft is the number one crime in the city.  I wasn't too keen on parking my car here and walking around but that is what we did.  There was a Hispanic gang in the alley and while we were there, the police came to pay them a visit...I was a little out of my comfort zone you could say!!  But...the art was cool!



We stopped to visit with this guy learning to play the guitar.  He was nice, a little out there but nice. 

Several times, we heard people say we needed to visit Baker Beach. It's close to Golden Gate Bridge and a beautiful view of area.  As we got there, just a little before sunset, the beach was nearly empty.   We headed down towards a beautiful outcropping of rocks with a nice view of the bridge. Of course, more rocks to stack.






Here's the deal, we spent quite a bit of time at the rocks on Baker Beach, by the time we left, more people had arrived and were walking around.  As we came around the bend of the rocks, we ran into naked men!! Shocking to say the least!! They were just standing around!  It was 50 degrees!! Who does that?  As we were scurrying on down the beach, there was a fully clothed man standing at the shore line and I said to him, "Can you tell me what is happening here?  Why the naked men?"
In a very quiet, awkward voice, and without making eye contact with me, said, "I'm not from here.  I was wondering the same thing."  

Turns out, after further research it is also one of the best known nudist beaches!  There were no signs posted and everyone who recommended the  beach said it was popular for families during holidays. Only awkward things like this happen to me...






Our last stop was the Sutra baths.  This was once a bath house but after many years of earthquakes and destruction, this is all that is left.  It was a breathtaking view and a beautiful hike down to the water's edge. 

So, it was a perfect week.  I did have to deal with some health stuff.  The surgeon's office called, they were hoping to have us come last Thursday.  The most Senior Surgeon at University of Utah/Huntsman has reviewed all of Shelbie's scans.  He has also met with two other surgeons who will be with him in the surgical suite.  We will meet with them this Wednesday and the procedure will follow soon after.  He still has hope that they will be able to remove the necessary tumors in a less invasive way and they are trying to come up with that plan before Wednesday.  If they determine a safe way to do that, they may be able to accomplish that the same day, otherwise, surgery will likely be next week. 

My hand became much worse while being gone.  I will start Physical Therapy tomorrow.  I had to play the organ in church today and it was my first time attempting to play.  During a quick run through, I could not for the life of me, get my left hand to co operate when there was more than just one note.  I ended up having to change the songs at the last minute to something with fewer notes and as it was, I couldn't use my left hand.  Some people mentioned afterwards that they saw I was playing with one hand and asked how I could still make it sound okay. I don't know how I did that.  It kind of breaks my heart that it's such a struggle.  I realize it was a calling I dreaded and even hated but it has become something I love.  It was stretched me in ways I didn't think were possible.  When I sit at the organ to play, I think of my grandma who taught me to play and shared her love of the organ with me throughout the years.

Here's to a big and busy week as we watch life unfold.  I hope I can maintain my new perspective and let God put his meaning on things before I rush in to make it all a mess.


Out to the porch

Today was an impossibly long and difficult day! It was move in day for Sam.  He got out the door way before I was ready because he wante...