Wednesday, April 12, 2017

ITP-a year later

Last week, I went skiing with my girl. It was my fifth (and final) time this ski season, well more than I went last year, or any other year since my teenage days.

A year ago, (almost to the day, it was April 6, 2016) I received the results from a CBC that confirmed what was at that point my greatest fear. The ITP that had hospitalized me in February had resurfaced, and lowered my platelet count to a dangerous level of 9,000 platelets per microliter of blood (normal is 150,000-300,000 per microliter of blood). This development moved my diagnosis from the much hoped for "one and done" classification of acute immune thombocytopenia to the more persistent and more difficult classification of chronic immune thrombocytopenia.

I was discouraged to say the least.

We tried putting me back on high doses of Prednisone, which caused all the side-effect problems that Prednisone often does, but didn't provide any lasting increase in my platelet counts this time around. This was concerning and somewhat confusing to my doctor, because I had responded extremely well to Prednisone during my first exposure to the disease. We gave it a bit more time to work, and then when it didn't, we moved on from oral steroids to intravenous immunoglobulin.

And so it was, that last year, I spent most of April 13 and 14 sitting in the infusion center in the hospital, watching Madame Secretary on Netflix while crocheting and getting very expensive plasma-based antibodies pumped into my bloodstream. When I wasn't distracted by Tea Leoni or my crocheting, I worried. I worried about where this new road  was going to lead me, what kind of changes I was in for, whether my doctor(s) and I would ever find the treatment that would work, how we were going to manage it all financially, and a host of other fears and concerns.

When I would have those concerns, I would talk to Jacob or Mark, my brothers who also happen to be General Practitioners. (My father was on vacation in Israel at the time, didn't know what had happened with my platelets, and naturally I didn't want to ruin his trip with concerns over my health.) Jacob and Mark were both very helpful, particularly as they each assured me several times that in their experience, ITP was something that was manageable, something that lent itself very well to a normal life, something that I would get a handle on. I specifically remember Mark explaining to me that nearly everyone finds a treatment that works for them, and they are able to go on and live as they want to live, but that it generally takes time to find the right treatment. When I pressed him as to how much time it generally takes, he reluctantly gave a time frame of several months.

I remember at that point the clouds of doubt and despair in my mind kind of dispersed, and I asked something along the lines of the following:

"So, I'm going to need to plan on this being something I'll have to work on and deal with and be flexible about for a year or so, but chances are that within a year, I'll be in a place where it's more of an annoyance or inconvenience than anything else?" 

Mark assured me that yes, we had every reason to hope and believe that this would be the case. At that point, life got quite a bit better for me, because while the thought of this being my "new life" was very daunting, the thought of it being something I'd work on for a year felt manageable to me. I mentally set aside the next twelve months as "the ITP year" and got on with living it.

Within a month or two of all this, I was referred to  a hematologist who started me on another medication regimen (steroids again, but this time it was Dexamethasone in super-high doses for four days per month, for six consecutive months),  all the while confidently assuring me that we would be able to get this managed, and it would probably happen sooner rather than later.

The Dexamethasone treatment was difficult of course. I endured brain-fog, exhaustion, irritability, and a host of other side-effects as I went on and then had to withdraw off the medication each month. Still, it did its job, and I didn't have to look too far to see those who were worse off than me. So, all in all, I was grateful, and continue to be so.

As I mentioned, those days in the infusion center were April 13-14, 2016. Tomorrow it will have been one full year since I had that conversation with Mark, and I've been living a steroid-free, active, happy, rich, and full life since the second week in November.

These days, ITP is something I think about when I notice a new bruise or two on my legs or arms. If I get a few larger-than-average bruises in a short amount of time, I generally get my blood tested, but so far, all tests have shown my platelets to be well within the safe zone. I did gain about twenty pounds during those steroid months, and I'm finding those pounds to be more difficult to lose than I would like to be the case. All the same, I can honestly and joyfully say that at this point, ITP is a nothing more than a minor inconvenience in my life.

Mark and Jacob were right.

Boy, were they ever.

Friday, November 25, 2016

Diwali Lights - or Christmas Candles

One day, as I was looking over the Red Ted Art Site, I found a tutorial for making salt dough votive candles. We had recently been to a Diwali festival at our local University, and so these lights were extra interesting to us, since they could double as Diwali lights as well as Christmas Candles. Having a plethora of perler beads at our disposal, and never having found a salt-dough craft that we didn't like, we went ahead and made several, thinking that they would make perfect grandparent and aunt (adopted and otherwise obtained) gifts.
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We were right.
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So, just in case Red Ted Art takes the instructions down at some point, I'll type them up here, using my own words:

You will need:

2 parts flour
1 part salt
1/2 to 1 one part water
a tealight
perler beads (or gems or whatever) to decorate

Mix the flour, salt, and water together in a bowl. Start with 1/3 part water, and gradually add more, until your dough gets to the consistency that you want for it. You can use your hands to to the mixing and kneading (my personal preference), or a spoon.

Take a lump and make a ball. Take a tealight, and push it down into the middle of your ball. If you like, wet your hand and smooth the sides out with your fingers. Then, decorate with perler beads by pressing them into the sides, if you like. Or, you can use gems, or paint, or whatever strikes your fancy for decorations. Let air dry on a non-stick surface for a few days, or however long it takes to become fully dry.

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Thursday, October 27, 2016

a scattered lion post - - OR we could say, it's a dang good thing I named this blog just a little bit of quirky-ness, because this post is pretty random and I'm not going to even try to pull it together more than it already is

I've been remiss in posting Lion pictures (as well as a whole bunch of other stuff) here. Ah well, life gets busy sometimes.

BUT!!! I have a packet of lion pictures, and a poem about lions. I've been saving them up for the day when I felt like taking the time to post them, and today is that day. Yippee!!

The only problem is . . . now that it's been so long, I can't remember where some of the shots were taken. So if you see this, and you know, feel free to chime in in the comments. ALSO, if you sent me a lion via text message on or around August 12, will you tell me? I have a note to myself dated August 12 that says "get lion pic off of phone", but I've looked through my phone and I can't find it, and I'm just OCD enough that it's bugging me, not to mention I feel ungrateful for not taking advantage of the opportunity to have yet another lion. (Sorry about that--lion text-er)

But, enough about my idiosyncrasies, on to the lions!

First off--a poem about stone lions.

Harmony brought this poem to my attention. It was read by the author, a Utah-based poet named Katharine Coles, as part of an interview she did with Doug Fabrizio on KUER (the Salt Lake City public radio station). The entire interview (which is fascinating) can be found here:

But, for now, we'll just post the poem--which is also kind of fascinating, and in some ways (albeit in much more eloquent language than my own) speaks to my thoughts and impressions which led me to start "collecting" stone lions in the first place.

Thirty Years With These Lions
by Katharine Coles

I have seen them in Taipei guarding museum steps,
In Kamakura temples guarding their own myth,
Winged and guarding time's passage at San Marco,
Excavated in Istanbul's galleries
They become inscrutable the further they erode.
Once we took our lions literally.
They stalked our caves and dogged our steps
Before we posed them.
We knew, if we lay down just what we were doing,
What it meant to invite them in.
I don't know why we set them in stone.
Take my neighbor, her tiny bungalow,
Her husband dead, she placed these lions
To flank her abbreviated walkway,
A gate between them, though she has no fence.
Their heads, curled locks flowing European-style,
Almost reach her eaves,
As if they might protect her just by looming.
In their calm they keep confusion at bay,
The local toughs, his ghost.
Look at that paw, its delicate lift,
Claws retracted for the long moment.
Ninety last summer, sharp, still ready,
She moves off the porch to draw me through the gate.

Next--and also by way of Harmony, here is a lion. Would that I could remember where it is found, but alas, that memory has escaped me. Harmony? Any hints?
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This next one is from Ryan and Becca, my brother-in-law and sister. They took a trip to San Francisco last year, and sent me this shot, daring me to guess where it was taken. Alas, I could not.
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So, then they sent me this one. A ha!! Golden Gate Park! Of course!
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And now we have lions from NEW lion share-rs. (Always fun to pull more people into the silliness, wouldn't you agree?)

This from my friend Kristi (formerly known as Katerina here on the old blog). Kristi taught me the joys of Cross-Country skiing. Although I had been on short trips before with my family (one particularly interesting time in Bryce Canyon comes to mind), it wasn't until I moved to Logan and went with Kristi that I found just how fun it could be to spend a few hours on Cross-Country skis in frigid temperatures.

But I digress, and Kristi's picture has nothing to do with Cross-Country skiing. But look at it! It's pink!! Talk about quirky! And what a nice head-garland! That's definitely not something you see every day, right? Right!!
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Finally, here's --a lion from another NEW lion share-r, my dad's cousin (which would make her my first cousin once removed), Becky.

She found this lion in Jacksonville last Christmas. It was dark, and she had to take it from a moving car, so the quality of the photo isn't great, but how fun is that to see them all decorated with Christmas ribbons and tinsel?
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I'll tell you how fun it is. WAY FUN.

And that's what I have for now. Maybe this will be the post that starts me into regular blogging again.

Or maybe not. You just never can tell, can you?

Monday, May 16, 2016

Fiasco at the Bakery

I'm coming up on an auspicious anniversary. Exactly 10 years ago next month, I had what I hope will be a once in a lifetime experience. Recently, it came to my attention that I had never written an account of that experience, and I wish to rectify this situation. Hence, the following:

This particular day in 2006 started out pretty much like any other basic day. I went to work at the opera company, just like I did every weekday. It was early summer, and I had just taken my summer wardrobe off of the shelf and put it in the closet. I remember on this day, I was wearing a favorite pair of sandals, little peek-a-boo toe numbers, lime green, with a small heel. I loved them, but it was always a bit of a trick at the beginning of the season to get myself accustomed to the feel of them.

I believe it was June, and due to our impending summer theatrical season, life at the opera was quite busy on that day. Mid-morning, I left the office to run some errands on the northern end of town.  After I was finished with those, I decided that since I was in the neighborhood, I would stop by my favorite bakery (Shaeffer House) for a little treat before heading back to the office.

That was almost certainly a mistake.

In those days, Shaeffer House shared a parking lot with several other businesses, including a Mexican Restaurant, a fabric store, a carpet store, and the local chapter of Weight Watchers. Don’t even get me started on the irony there.  Also, the sidewalk between the front door of the bakery and the parking lot was a very short little thing, probably three inches tall, at most.

I pulled into the parking lot and made my way to the bakery, choosing to park right in front of the front door. As I was slowing down to park my trusty and beloved RAV4, somehow my feet started slipping around, and I found the big glass doors (which were encased in an even bigger half-moon of a glass window) looming closer and closer.  I panicked, frantically trying to find a way to stop the car, and as I did so, I noticed two girls behind the counter of the bakery, their eyes growing wider and wider as I inched my way to, and then through the glass. A shower of sparkly glass pieces came down, covering the hood of my car, as I finally managed to bring it to a stop.

Immediately, I began a half chant/half prayer. “Please Heavenly Father, let this be a dream!” “Please Heavenly Father, let this be a dream!” Sadly, that prayer was not answered in the way that I had hoped, and as I gingerly opened the door of the car and made my way out, one of the wide-eyed girls met me. Asking me if I was okay, she led me to a table near the back of the bakery, offered me a drink of water, and called the police. I was considerably shaken up, but otherwise completely unharmed. I ascertained that no one else had sustained any damage due to my actions, and tried to calm down, taking deep breaths and sipping my water.

The police officer arrived, took my statement and the statements of the other witnesses, and helped me start my car and back it out of the bakery. (The trusty RAV4 was completely fine, aside from some minor paint damage, and little pieces of glass being stuck in the front windshield wiper area.) He took my insurance information, and let me go on my way, not even giving me a citation.

I got in the car, drove two blocks, and called my insurance agent, a fatherly-type man, who  had previously been an ecclesiastical leader of mine, and for whom I had great respect and admiration. He answered the phone, and in a quavering voice (which was embarrassing for sure, because I was all of thirty-five years old at the time, and felt like I shouldn’t be behaving like a little child), explained to him what had happened.  Upon learning that I hadn’t been hurt and that no one else had been hurt, he turned to the business at hand, assuring me that he would take care of it. We hung up, and I continued on my way to work.

That’s essentially the end of the story. My insurance company fixed the window, and aside from the psychological damage of having to smile through countless itinerations of, “Charlotte, didn’t you know it wasn’t a drive thru window?” I emerged from the whole experience basically unscathed.

I never entered that building or attempted to park near those windows again. Even when I was “auditioning” wedding cake vendors a year later, I studiously avoided Shaeffer House bakery, choosing to eschew what would certainly have been a deliciously delightful cake for the sake of not having to mentally re-live that experience.

A couple of years ago, it was announced that the building that Shaeffer House leased would be torn down, and so the bakery moved to new digs. They now have a regular-height curb at their front door, no large half-moon windows, and (wait for it . . . ) a drive-through window.

I like to think I had something to do with that. 

Sunday, March 06, 2016

A Nature Birthday Party - posted six months late, but who's counting?

So, I'm behind in blogging. Like, six months behind in blogging. That's okay though, right? Right. Totally okay.

For our daughter's 7th birthday party, she requested a "nature" theme.

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We played around on pinterest a bit, and I pulled up some pictures of cakes that were within my abilities, and she chose one. This one, in fact.  I followed their instructions for making the chocolate grass, but naturally, we had chocolate cake and cocoa-laced graham cracker crumbs for our dirt, because really, what kid wants a carrot or spice cake with gingersnap crumbs for a birthday? No kid that I know. Also, rather than attempting ladybugs out of frosting, we just took a bunch of Heather's plastic animals, gave them a good sterilizing, and stuck them on the cake.

She wanted a pond at the top of the cake, so using the same method that I'd used to make the Frozen candy glass shards last year, we made a pond. Worked marvelously.

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As the girls arrived, we had them work on some coloring sheets that I'd found on the internet as a gathering activity. They seemed to enjoy that, and it kept them all busy as everyone made their way to our house and as Eric and I got things ready for the real fun.

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I found a "Nature Explore Kit" work-up on Pinterest, and basically decided to use many of Kara's ideas. We ordered some bug jar craft kits, and just for fun, and because we decided to make non-candy goodie bags, we got some bug tongs and magnifiers as well.

So, once all our girls had arrived, we put away the coloring pages, and got to work making bug jars. They came together pretty quickly (we also the glue dots that Kara recommends), and all the girls were thrilled with their jars.

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After all the jars were done, we sent the girls out to find their nature! I made an impromptu rule that anyone who was five or less needed to have someone with them who was seven or more, just to make sure that we didn't have any girls running into the street or getting lost or something, and then we gave them a perimeter, and turned them loose.

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As it turned out, they all searched on their own for about 10 minutes, and then they all pretty much joined up together and hunted in a pack. So, that was kind of awesome.

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While the girls were filling their scavenger sacks, Eric and I moved the cake and ice cream, the paper goods, and the tablecloth outside.

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All in all, it might have been our most successful birthday party to date. If you ask me, scavenger hunts are the way to go! We may do one every year.

Sunday, February 28, 2016

ITP - on miracles and tender mercies

There are so many things that I learned and ways that I was blessed through what I've come to call "my ITP adventure", and while they are still fresh in my mind, and the experience is recent, I want to get some of them written down.

Miracle--that I was in a car accident while I had an abnormally and dangerously low platelet level, and that I emerged from that accident without even a scratch on me.

Miracle--that I spent a day skiing on a mountain, 40 minutes away from a hospital, also with a dangerously low platelet level, without having any kind of serious bleed, internal or otherwise.

Miracle--that while on the mountain, I did fall (I generally don't), and I did sustain a bruise that was serious enough to motivate me to get my blood checked out sooner rather than later.

Miracle--the Sunday afternoon nosebleed: I had been having nosebleeds for awhile, but I had attributed it to the dryness of the winter climate. But on Sunday, I got a nosebleed, and although it wasn't serious in terms of the amount of blood I was losing,  I just couldn't get it to stop. I tried every method I could think of, and then went on-line to try all the methods that were there as well. After 2-3 hours, I called one of my doctor-brothers in Cedar City, and following his advice (to get some Afrin, soak a cotton ball with it, and put that up in the nostril) we finally got it stopped.

Concerned, I asked Eric to call our home teacher, and that night he and Brother Bear anointed my head and gave me a Priesthood Blessing. It was one of the most tepid blessings I've experienced, I was promised that I would rest comfortably that night, and not much else. At the time, I found it not at all comforting, but although it was confusing at the time, in retrospect I'm beyond grateful that I wasn't given a promise that "all would be fine", because if that had been the case, I probably wouldn't have gone into the Instacare the next day, and if I hadn't done that when I did, my story might have had a very different and more difficult ending.
A note Eric wrote to himself to remind him of all the things he needed to bring me at the hospital.

Miracle--that when I arrived at Instacare, the nurse that triaged me was a friendly and familiar face. As the situation unfolded over the days and I found myself getting nervous about all that could go wrong, I would think about how she "just happened" to be the one who called me back to that room, and it would remind me that the Lord obviously knew all that was going on with me, and was directing it from the very beginning. That knowledge gave me courage and hope and so much faith. I later expressed this to her, and she confirmed that she too had felt the Lord's guidance in putting us together in that moment, that she had sensed it as she was triaging me.

Miracle--the parking lot phone call--As I left the Instacare to go to the Emergency Room, I was panicked. I sat in the car in the Instacare parking lot and tearfully called Eric, telling him what had happened, and arranging what he and I would do next. After that phone call, I called Mark (the doctor-brother that had helped me with the nosebleed the night before), and told him of my platelet number and what I was to do now. I could hear grave concern in Mark's voice as he reacted to my news, and I could tell that what was happening now was bad, really really bad. We ended the phone call and I made my way to the hospital, taking deep breaths, and trying not to let my tears overpower my vision and ability to drive.

I had just arrived at the hospital and was pulling into a parking space when my phone rang. It was Mark, telling me that he would be quick because he knew that I needed to get checked in. He said that he wished they had told me at Instacare what my white and red blood cell numbers were, because if they were fine and it was just my platelets that were low, then it probably meant that I had a condition called ITP, which was very treatable and not at all life-threatening if treated. I thanked him for the information, and went into the Emergency Department. They checked me in very quickly, having been warned by the Instacare Doctor that I was coming up. As I was led back to the room I tried (unsuccessfully) to hold back tears as the nurses and aids checked my blood pressure, drew blood for tests, covered me with warm blankets, etc. Eric arrived in the room, and asked how I was feeling. I replied that I was feeling fine, but that I was afraid of what was going on.

Shortly after that, the Emergency Room Doctor entered the room, introduced himself, and sat down at my side. Getting right down to the point, he said, "Your blood looks good. Your platelets are extremely low, but your white blood cells and red blood cells are normal. We think you have a condition called ITP." It was as if he was reading from a script that Mark had written fifteen minutes earlier. Upon hearing those words, my tears stopped, my fears were calmed, and my focus changed from "This is so scary, what is happening, how am I going to carry on?" to "Okay--where do we go from here and what do we do now?" I felt immediate peace, and I haven't been afraid from that moment to this.

I think about that now. In this whole dramatic event, I was only truly inconsolably afraid for the twenty-five minutes between the time I learned about the low platelets and the time I heard the doctor say that I probably had ITP.  Now, those twenty-five minutes were rough, really really rough, don't get me wrong--but they were only twenty-five minutes. I firmly believe that the Lord inspired Mark to call me again, a mere 5-10 minutes after he'd just spoken to me, so that he could give me the experience of complete and total relief that came when the Emergency Doctor told me in the exact same phrasing the words that would mean that everything was going to be okay.

Miracle--the Friday Flowers--As I returned home from the hospital, I told myself that I was going to need to be patient, that my body had been through a lot, and would be continuing to go through a lot as I managed medications and whatnot. I told myself to take it day by day and week by week, and listen to my body while gradually (and that was a key word--gradually) taking on the pre-hospital/pre-steroid responsibilities that I had been shouldering before. By and large I did well with this, and my body recovered a little bit every day, and so every day was, on average, a little bit better than the day before.

I came home on Thursday, February 18. On Friday, February 26, I'd been through a week of semi-regular life, and although it had gone well, for some reason on that particular day, I let the fact that my energy was still low and my abilities weren't yet back to normal really get to me. I was down about it all, and by the time the afternoon hit, I found myself sitting on the couch in discouragement, trying to fend of an attack of gold old fashioned wallowing.

Just as I was about to dive headfirst into tears and sadness, I saw a van pull up to our front door. A man jumped out with a beautiful bouquet of roses and lilies, and rang our doorbell. One of my beloved aunts had taken the time and spent the money to send me a little miracle, and it had arrived at the precise moment when I was most in the need of a miracle. The tears of frustration that were welling up behind my eyes turned to tears of gratitude and joy, and the day was saved.

The miracle that once I had received the initial terrible news that my platelet level was 2, every other piece of news that I encountered was encouraging and hopeful.
-That my body was responding to the steroids
-That all my other organs were normal
-That I was testing negative for Lupus and other auto-immune diseases
-That my body was tolerating the steroids well and that I was not having blood sugar issues
-That I could begin to taper off the steroids and see what happens now

The miracle of the love of our friends and neighbors and family members--As I wrote in one of my update letters, I have been absolutely amazed at the ways that our loved ones galvanized together to support and care for us during this experience. First and foremost, family after family after friend after friend texted, called, e-mailed, and in other ways let me know that they were praying for me and for our family, and I felt those prayers again and again. I'll write more on that separately.

In addition to the prayers though, we received more tangible services and care than I had ever expected.

  • Neighbors stepped up to get my little girl to school, from tumbling and other activities, and to care for her during times when it was inconvenient for Eric or I to do so. Other neighbors gave (and still extend) standing invitations for us to call them when we found that we needed more of this, and we have taken them up on their offers to find that they were more than willing to "put their money where their mouth was" so to speak.
  • As soon as she heard that I was in the hospital, my mother offered to come up and be with us to help out. We ended up asking her to come when I got out of the hospital, and she dropped everything and made the drive to be with us. During the time that she stayed, she cleaned our home (which was invaluable to me), played never-ending amounts of board games with the little miss, and just generally gave me the kind of peace that you can only get when your momma is around to take care of you. It was just what I needed, and I knowing that she was happy to provide it made it all the more easy to accept and enjoy.
  • I was able to access all my medical records and lab reports on the IHC website, and as I would email them daily to my father and two doctor brothers, they would look them over, consult together, and tell me in regular language what was happening with my body, what it all meant, and what to expect next. They did this willingly, cheerfully, and without any ego or competition as to who was getting more calls from me at any given time. Having this blessing was huge. As I would explain the situation to the nurses and others taking charge in my care, time and time I again I was told how unique my situation was, and how fortunate I was to have this kind of access to medical professionals that I knew and trusted. 
  • One of my cousins called while I was in the hospital, checking in on me and seeing what I could use. Knowing that she had ties to Arizona, and being in a teasing mood, I told her that what I needed more than anything else was a bag of Arizona grapefruit, delivered to my door. Little did I know, at that precise moment, her parents were visiting Arizona. The grapefruit was delivered to me in person, just over a week later.
  • Another cousin who I hadn't seen in quite a while stopped by with her husband while she was in town for other reasons, leaving me with vanilla scented lotion (my favorite) and lots of love.
  • While I was in the hospital, I received numerous visits from ward members and friends, and would have received more if I didn't beg off on the day when I hadn't slept well the night before. As I heard some of the sounds from the other patient rooms, I realized that not everyone necessarily receives this blessing, and doing so helped me to recognize just how fortunate I have been to have this kind of support.
  • Many relatives and friends who were unable to visit due to distance or other constraints sent flowers, text messages, electronic video well-wishes, and heartfelt cards. By the end of my second day in the hospital, I had quite a pretty collection of plants and flowers crowding out the computer monitor that the nurses would use to track my care. Looking at all of those lightened my heart and gave me peace while I waited for my body to work its way through all that was going on with my blood. The cards and flowers continued into the weeks after I returned home as well, which was a heartwarming and welcome surprise.
  • My visiting teacher went to the library and picked up several books, both audio and print, as well as videos with me in mind, then brought them to the hospital so I could choose the ones I wanted to try. During the time that I was going through all of this, she was in the midst of setting up her own health challenges--one week after I came home, she had a successful gallbladder removal surgery. 
  • I've been the recipient of bath bombs, muffins (because one mother mentioned that when she feels lousy, getting everyone off for the morning can be the hardest part of the day), a chocolate peanut butter cup shake (my favorite), and a front door filled with construction paper hearts labeled with good wishes and love. A friend arranged for Heather and Eric to have comp tickets to see our community theatre production of Chitty Chitty Bang Bang, which they both enjoyed thoroughly.
  •  Finally, and most constantly, we've been fed. From my first day in the hospital, there has been a steady stream of chicken and pork and vegetables and lasagna and salad and beef and rolls and cookies coming through our front door and landing on our kitchen table. Every giver has been gracious and concerned and loving. No one has made me feel "less than" for not trying to take it all on by myself, no one has implied that helping us has been a burden on them, though having been on that side of the coin, I know that it isn't always convenient to come to the rescue like they have done for us. I am grateful.

The miracle of the power of prayer--I remember when my father was treating his cancer diagnosis, reading a letter that my mother had written to our extended family, saying that he could feel the prayers that were being said  on his behalf. Since then, and every time I've head something like that expressed, I've wondered exactly how one can "feel" prayers that are said on their behalf. Now that I've experienced an army of pray-ers focusing at least a portion of their efforts on me, I feel that I know a little more about that now. 

For me, having prayers said on my behalf means that I have peace. It means that things that ordinarily might send me for a tailspin don't really impact me all that much, mentally or emotionally. It means that I can trust my Father in Heaven with ease, knowing that He has all power and all love, and all wisdom, and that I can depend on Him to work his work in my life and in the lives of my family as well. It means that all the other miracles that I've described here came to pass. It means that I know I'm not alone, not today, not ever. Having prayers said on my behalf has lightened my burdens considerably, even to the point that, as it says in the scriptures, "Even [I] could not feel them on [my] back." (Mosiah 24:14). I don't know how long I'll be able to be the recipient of such a wall of faithful prayers, but I hope that I'm learning what I need to learn and growing as I need to grow while I have them, so that when the prayers need to go to others in trouble, that I'll be able to remember these things and use them.
My daughter performs as part of a school assembly that I was able to attend on the day I was released from the hospital.

The miracle of appreciating what I have--Like many of us, I struggle sometimes with focus--in that I focus on what I want, often to the exclusion of focusing in gratitude on what I have. This experience has given me the opportunity to shift that focus, and it has been undeniably sweet to be able to enter back into regular life again. From having the luxury of sleeping in the same home with the two people I love best, to being able to brush my daughter's hair and give Eric a sneaky kiss on the back of the neck, to turning up the peppy tunes and dancing around the kitchen while putting away the dishes from yet another friend-made supper; life at home has felt more enjoyable than I think I ever remember being the case. And if that weren't enough, as I've gone into work for the hours that my energy allows, I've been reminded how much I truly enjoy my job, how fulfilling it is to me to shuffle numbers around, organizing them into areas where they can be used to tell stories, to pay accounts, to gain interest. I've  reveled in listening to music on my pandora stations, feeling the calm of a gentle harp or the excitement of a good beat.

A few weeks ago, when I was reeling from the accident that totaled our Veracruz, I dusted off my old gratitude journal with the resolve to get back into the habit of making a short daily entry there. In the beginning it was a little bit difficult to find areas that merited gratitude, particularly in the evenings, when I was tired and careworn from the day's struggles. Gradually though, it became easier and easier. And then this all happened. Now, time that used to be spent searching for something to write is spent mentally sifting through blessing after blessing, trying to determine which is the most worthy, and thus, which will be written down in the book.

I don't think I'm naive enough to think that life can go on like this forever. Sooner or later, I won't need to be carried on the wings of prayer as I surely am now, and real life will encroach and I'll probably go back to being annoyed by incessant questions from my kid, and first-grade humor, and some of Eric's little habits will cease to be endearing and go back to being more on the frustrating side than otherwise. My job will have stressful days, and the laundry will pile up, and I'll get overwhelmed and worried about finances and safety. But, even when that happens, and it surely will, I think and I hope that I'll take a piece of this experience with me throughout the rest of my life. I think that this has changed me, for the better, and forever. I think I've learned some valuable lessons throughout all of this, and I think I'm a better person for it all. And for that, I'm grateful.
Home from the hospital, having energy, and dancing in the kitchen.

Saturday, February 27, 2016

My adventure with Immune Thrombocytopenia (ITP)

So, it's been kind of eventful around here. To sum up, just under two weeks ago, I went into our Instacare Clinic for what I assumed was some kind of anemia or middle-age-related malady, and didn't come home until three days later.

I wrote out much of the story as it was happening, in order to keep my siblings and friends updated. So, I think I'll let those letters tell most of the story now.

Monday, February 15, 2016

So, some of you have heard some of this but not other parts, and some of you have heard all of this, and some of you have heard none of it, but I now I have access to a device so I don't have to type everything out on my phone, so I thought it would be easier to keep track of who knows what if I just wrote out what was happening and sent it to you all.

So--here's the situation:

I'm in the Hospital.

I've been having some issues with bruising lately, and I made an appointment for a physical with my doctor for the end of next month. Then, on Friday I went skiing. I fell once, not a huge fall, but later that night, I noticed that I had a huge goose egg and purple bruise on my hip. That was concerning, and I decided that once the weekend was over, I'd see if I could get into my doctor sooner to see what the deal was with all the bruises.

Sunday I got a nosebleed that took several hours (and two calls to Mark (my brother who happens to be a general practitioner)) to get stopped, so today I called my doctor to see if I could go in. They couldn't see me, and I knew I'd just worry about it until I knew that I didn't have leukemia, so I went into the instacare. 

They took my blood at instacare and found that my platelet level was 2 (150 is normal). They told me to go immediately to the emergency room, and told me that "I might want to have some emotional support" there as well. Naturally, I panicked, picturing everything turning out the worst it possibly could, etc, etc. Eric took our girl to his parents house and met me in the ER.

In the ER they told me that my blood cells were good, that it was just my platelets that were low, which was a really good sign as far as cancer and the scary stuff like that goes. They ran a few more tests, and they diagnosed me with an auto-immune  disease called ITP--its a disease where the immune system attacks the blood and destroys the platelets for some unknown reason. Apparently it's a common, and treatable condition, so that's encouraging. Way better than leukemia.

So, they put me on iv steroids in hopes that that will calm down my immune system. I feel fine, but they can't send me home because my platelets are so low that I'm at a very high risk for an internal bleed. In fact, my doctor told me that someone must be looking out for me because I really should not have gotten off the ski mountain with something as simple as a big ugly bruise. So, I'm feeling very fortunate and blessed.

Game plan for now is for me to stay in the hospital until they get my platelets up, the hospital doctor says probably 2-3 days. If the steroids don't work, they will look at transferring me to another hospital about 90 minutes south of here, where there is a hematologist on staff, but we'll cross that bridge when we come to it.

So, not the best day or best news I've ever had, but I'm really grateful that what I have is most certainly treatable and not terminal. I'm also really glad that I didn't have some kind of awful bleed out in some kind of inconvenient or dangerous place. Of course I will welcome any prayers you might say on my behalf, and I'll keep you posted as news develops.

Love (and thanks) to you all,


Tuesday, February 16, 2016

Met with my hospital doctor, the steroids are apparently working, because my platelets are up to 11 (from 2 yesterday). He's pleased with that level of progress.I had an ultrasound of all my abdominal organs yesterday, and they all look completely normal, so more good news there. I'm getting another dose of steroids as I write this, apparently the plan is for me to get this dose today, another dose tomorrow morning, and if my platelets keep responding as they have, then he'll send me home tomorrow afternoon/evening with oral steroids. I was kind of hoping for an earlier release than that, but there's been no more talk of being transferred to the other hospital or anything like that, which is nice. 

Love to you all,


Wednesday, February 17, 2016

Good morning, all!

Platelets are up again today, this time to 19. For reference, 150 is the low end of the normal range, but apparently as long as the level is 50, you generally don't treat the issue. My doctor is pleased with the improvement in my level, but says I need to stay here another night, do another round of IV steroids this morning, and then start oral steroids tomorrow. If my labs continue to improve, he said that I should be able to leave tomorrow. I'm disappointed that I'm not leaving today, but I kind of had a feeling that this might happen, so I consciously tried yesterday to keep my hopes and expectations on the medium side, rather than on the high side. So, I'm feeling okay about it I guess. Not thrilled, but not crushed either. 

I slept MUCH better last night, only waking when people came in to check my vitals and take my blood. They let me have benadryl before bed, and it worked like a dream. It's always amazing to me just what a difference a good night's sleep can make.

It's probably a good thing that I'm not sleep deprived, because the relief that I don't have Leukemia is starting to recede, and now my thoughts are turning to concerns about what I actually do have, and how it's possible (and even maybe likely) that this is something that I'll need to deal with for the rest of my life. That's kind of dangerous mental territory for me right now, because it will be quite a while before I have a clear picture of what my prognosis is, and so to worry about it today is definitely counter-productive. From what I've researched and gathered from conversations with my team, there are all different kinds of levels of ITP. A small percentage of adults have one episode, and then it goes away and they never deal with it for the rest of their lives. A larger percentage have it more often, sometimes it will go into remission for awhile and then crop back up, some people deal with it for 6 months to a year, some deal with it all their lives, getting periodic blood tests, and treatment as their levels dictate. I don't know which group I'm in, and I won't know for awhile. 

The first-line (i.e. least invasive) treatment that is used is Prednisone, and while taking Prednisone is definitely preferable to walking around being a ticking time bomb of internal bleeding possibilities, it's not exactly a side-effect free medicine. On the inconvenient side, it causes water retention, and weight gain; where I've spent spent the last year diligently losing 35 pounds, I'm not terribly excited about that prospect. On a more serious side, when used long-term, it raises blood sugar levels and and can cause Type 2 Diabetes--something I'd just as soon avoid. And then there's the fatigue and emotional and mental side effects, which don't sound fun either. 

But again, I'm not at that bridge at this point. So, I'm trying to focus on the good in my situation, and have faith that all will work out according to the Lord's plan for me and for our family. 

Having had some time to reflect recently, I can see how the Lord prepared me spiritually for this experience. When we crashed our car (two weeks ago yesterday--it seems like a year ago now), I had quite a bit of anxiety about that, and as can be a problem for me, I started down the mental road of letting the anxiety of that situation spiral into anxiety about a million other situations that I could conceive. That's dangerous territory for me, and I know where that road can take me, and I don't like the destination. So, I made a concerted and conscious effort to turn to faith and hope and gratitude the scriptures and prayer, and in doing that, I received answer after answer and guidance after guidance pointing me to choose faith and trust in the Lord, who is all powerful and all loving and all understanding and a worker of miracles. That's the place where I was when this new and more difficult journey cropped up, and while my first inclination when it all happened was to think, "Really??? This on top of all the rest?? Why??", I can now see how the  previous struggles have been an opportunity to grow spiritual muscles and skills, and the beginnings of what I hope are habits--muscles, skills, and habits that are proving to be invaluable to me today.

On a somewhat related note, it's been really amazing and humbling to me how so many small things have come together to make this whole experience easier for me. Starting from the random selection of my Instacare nurse on that first day--she "happened" to be a member of my stake, and was the Stake Primary Music Specialist when I was primary chorister, so we got to be friendly with one another. Having her there when I got the scary news of a "2" platelet count (I later found it it was the lowest platelet count she'd ever seen in 20 years of nursing) was so comforting, and she came by my room to visit me yesterday, sharing in my relief that my diagnosis wasn't more serious, and laughing (and crying) with me while telling me the story of praying for me in her family prayer that night, and how her kids wanted to know who I was and what was happening, and her not being able to tell them because of HIPPAA, but just telling them to trust her, that I needed their prayers right now. That was just the beginning, of the help I've received--if we took advantage of all the offers of meals we've received, I probably wouldn't have to cook until Easter or later. I've been AMAZED at the sheer force of the goodness of people, how they have rallied around me and our little family through all this. I've always known I had a great circle of support, but truly, I had no idea people were so good.

Speaking of my little family, they are doing well. I think being the mom and the dad and the husband of the invalid has been a bit of an adjustment to Eric--he was remarking yesterday about how he spent pretty much the whole day in the car, attending to my needs and our daughter's needs, but he does it all with his trademark good humor, which is such a blessing to me. One of my co-workers brought dinner to the two of them last night, and he raved and raved about her food, telling me that she made "the best chicken breast he'd ever eaten". I'm trying not to get offended by that, but I know that making moist flavorful chicken breast isn't my forte, so maybe when things settle down a bit I'll see if she can't give me a lesson or two. Now, if she had brought him tamales or another of my "specialties" and he had raved about those, he might have ended up in the doghouse--but for chicken breast, I'm okay. :)

And I think that's enough for this message. I've got a big day planned, and I better get started on it. That Netflix isn't going to watch itself you know!!

I love you all, and am so grateful for your love, your support, and your prayers. Thank you.


Thursday, February 18, 2016

My platelets are 49 today. Hooray!

The doctor says I can come home. I have to finish my IV steroids, and he has to do all the paperwork and stuff, and then they'll send me on my way.

I'll need to follow up with my Family Physician on Tuesday, take 70 mg of Prednisone orally until my level rises to 100, then taper off and see how things go. 

He's recommending that I do a consult with a hematologist as well, just to make sure that nothing is being missed, but my hospital doctor says that my body responded to the steroids extremely well and extremely quickly, which is awesome. Pathology reports and other reports are coming back encouragingly clean as well. 

So, things are looking good. :)

Love you all,



Celebrating being home together again

Tuesday, February 23, 2016

Just got updated labs this morning--my platelets are at 361. Normal levels are 150-400.


I won't be able to see my physician until tomorrow afternoon, but my "real" doctors (Jacob, Mark and Dad) say that this looks great, that my doctor will probably start easing me off the Prednisone tomorrow. 

In other good news, my blood sugars were normal, which indicates that my body has been tolerating the Prednisone well.

Physically I'm doing pretty well.  I'm still low on energy, taking it easy, spending a lot of time on the couch. Our ward has arranged for meals for us this whole week, and honestly, it's been really nice not to worry about that.  I've been going into work and catching up on some things there, but only pushing it as hard as my energy allows. 

As always, always, always, thank you for the prayers and the help and the love. I've often wondered what people meant when they've said that they can "feel the prayers" said on their behalf. Now I know. For me, it means that I feel calm in the midst of change, confidence instead of fear, and that a burden that could be heavy and really should be heavy is actually quite light. 

It also means miracles--miracles as my body responded to the medicine effectively, miracles as I have encountered only minimal side effects, miracles as I recognize just how perfect and sweet and uniquely ideal my life is, just as it is right now. So, thank you for those prayers.

With love,


Tuesday, December 01, 2015

Good Tidings, Great Joy

If you've been following my Christmas decor/ornaments posts through the years, you just might remember that I have a collection of angel figurines and ornaments.

Or maybe not. Either way, we're going to talk a little bit about that today.

I think my collecting goes back to a time when I was young and we were visiting my Grandma and Grandpa Willis at Christmastime. While there, I noticed a trio of singing angels that they had on an end table or something. The angels were fairly simple, made out of strong cardboard and fine (as in thin) yarn, but to me they were all that was magnificent about Christmas. I don't remember if I asked or hinted, or if my grandmother just saw my fascination and indulged me, but when we went back to Cedar City at the end of that trip, one of those angels went with us.

It sat atop our Christmas tree that year, and has every year since. I keep threatening to take it to my own home, since grandma did give to me after all, but my parents love it, and to be honest, it might not feel like Christmas to me if I didn't know that "my" angel was on top of "their" tree.  So, there it stays.

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As I became more of an adult, I started collecting an angel or two on my own, and Heidi has followed what my grandmother started, by recklessly indulging me in my pursuit of beautiful Christmas angels.

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It's one of my favorite (albeit selfish) Christmas traditions, getting an angel from Heidi.

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As I've pondered my love of Christmas angels, I've wondered why they might hold special meaning for me. Perhaps it's because I warm to the roles that different angels played in the Christmas story, telling Mary of her impending role as mother of the Son of God, telling Joseph not to fear to wed Mary, telling the shepherds of the marvelous miracle of Christ's birth just a short distance away. I especially love the "multitude of the heavenly host" that joined that announcing angel, singing their joy, simultaneously adding solemnity and celebration to the best announcement that ever was or ever would be made. 

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In each of these situations, an angel was a bringer of marvelous, peace-filling, life-and-world-changing, good news. So, I suppose it only makes sense that I would enjoy a visual reminder (or two or ten) of those events and that news in my home.

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And if that reminder happens to be pretty as well, well, what's not to like about that?

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