Tuesday, June 17, 2014

The Fundraiser

 "If the only prayer you said in your life was Thank You, that would be enough."
~Mester Eckhart

We rounded the corner from Antelope drive onto 2500 S.  The theaters were in view and behind it was the park.  We were a little late getting going, we had hoped to be there a little before six o clock set up a little display, and leave.  An awkward position, to tell you the truth.  In so many ways we hoped no one would show up.  If that happened, it seemed, it would be easier.  But as we approached the park, emotions bubbled to the surface and we had to circle the parking lot a couple times, one, because there was no room to park, but two, we were asking ourselves if it would be easier to just go watch a movie instead.

As the park came clear into view, the sheer number of people that were there was just amazing to us.  I cannot explain the feelings one gets when they see such a sight of people who came to be a part of something more than a simple fundraiser.  There was a spirit that was there that made it feel like something special, at least to Tiffany and me.  A cause greater than us.

A few weeks ago, while I was sitting in the hospital with Tiffany combating the fevers she was having, I received a call from a good friend, who is also our Home Teacher***, suggesting that there were many, many people that wanted to do something, but had felt like they were unable to because, simply, we weren't giving anything for them to do.  (Which, by the way, is not true.  Our freezer, which had been donated by a family, was full of freezer meals, and continues to get stocked up from time to time.  We have had many instances where neighbors, friends, church members, have driven Tiffany to Huntsman to get labs drawn, infusions completed and even some long scans.  Our front yard has never looked better, and we are constantly bombarded by well wishes and get well cards.  We have many people taking care of us right now - honestly).

So, he said, that a few of them had come together and were talking and decided to do a fundraiser for our family, figuring that would give people an outlet for their wanting to help us.  Initially, my response was no.  But he is a salesman by trade, and by character.  He has a way that just gets you to accept, and while I combated many of his points, the final one was this... He said he would do it whether I agreed to it or not, setting the date for June 14.

To say it was humbling to be there would be an understatement.  But, the love we felt from the hundreds of people that showed up made us not only feel loved, but welcome.  We were only going to stay for a few minutes.  Leave a thank you display, and go.  But as we arrived even before we were out of the parking lot, Tiffany was swarmed and was surrounded by friends and family all night long.  Any time somebody left her little circle, another one or two people would jump in.  Each and every person there made us feel like we belonged and the spirit of the event wafted over the entire park.

You may ask, why would we not feel like we belonged?  Think about that question and the situation and you tell me. 

So, we just want to say thank you.  To all those that participated.  To those that put it together, who ran the show. To those that donated items and gave of their time and talents to help.  To those that came to support the event.  And also, to those that support us in so many other ways.  We simply wish to say, THANK YOU, though words are not enough.  Indeed, we love each and every one of you and are indeed grateful for everything that has been done on our behalf.

Below was Tiffany's note at the fundraiser, and appropriate here as well.






How do you express the kind of gratitude and love we feel? It is impossible. Our words are so limited. It is our knowledge and belief however, that there are some words that have power to reach the very depths of the soul, to calm a troubled heart, and to change one's very nature. We invite anyone who would like, to accept a copy of one of the Miller's favorite books for yourself, or to share with a friend. The Book of Mormon has reminded us of the greater meanings of things. Because of it, we know, that there are things in this life, that are meant to last forever. Through it we have felt Heavenly Fathers love for us, and for all of his children. We know that with faith, miracles can occur, and through the darkest hours of our lives, we can have JOY!

WE LOVE YOU!

And with that, we had some copies of the Book of Mormon you could take.  Because the gospel of our Savior is truly what gives peace in a troubled world.  What more could we give back than that?  The Book of Mormon is simply another testament that he lives, that he loves us, and that with him, we can have joy and happiness despite what is going on around you.  If you would like a copy of one yourself, please go here.  If you have any questions regarding it, feel free to email me.

The day and week ended well.  Tiffany was on her feet, and feeling great.  She did note to me, however, that as bad as the week started, it indeed ended in an opposite but equal feeling of joy.  She continued, that she hopes nobody does this wonderful nice thing again for us, because, if to get to the good, she has to go through pain, she is not sure she can handle that again.

HAHA, I love that girl.

Cheers,

Nathan


***Home Teachers, in the LDS church, are priesthood members that are assigned to watch over and take care of a family.  Usually that means a monthly visit or so, watching out for and caring for the family as needs arise.  Somebody we can call on in any event that we feel like we need a little help.


Monday, June 16, 2014

So Many Things To Say...

First off,  we are blessed in so many ways.  And I will share with you why.  But will do it in a couple of posts.

This post, I need to share an update with Tiffany, and would have liked to prior to now but our weekend was a bit crazy and I did not find time to update her status.

In the last post, Tiffany was admitted into Huntsman to try to figure out why she had the pain, get some scans, and hopefully start treatment.  The scans happened, and the results of them came back as noted and the doctors came in and told her about the tumor. 

Well, this is where the story gets a little crazy.  You see, our Dr Glenn has a team of doctors that she works with.  This team includes a bunch of doctors learning the oncology ropes.  Once Tiffany gets admitted into the Huntsman Hospital (vs. the clinic), there is a separate team of doctors that watch the inpatients.  So on Thursday morning, one of those doctors came in to Tiffany and told her about the tumor and left it at that, suggesting we would be in contact with the radiation oncology team to figure out the radiation treatment.  Come Friday morning we had still not heard from this team.  Now from here the details get sketchy, and I should probably have Tiffany write and explain it in detail because I am likely to get the next crazy part wrong in some manner as I was not at the hospital but working (but no fear, Tiffany was not alone - her sisters were with her if I was not).  I will do my best to help the casual follower understand, but will ultimately get the gist of the story correct and the end result is accurate. (Tiff - you can respond below if you feel that I did a poor job explaining what happened).

On Friday morning, there was a Fellow (who is an oncologist in training - as noted in a previous post, a Fellow is already a full doctor, but the Fellow program gives them the specialized training into oncology) working in the Radiation department who came to talk to Tiffany about the tumors and treatment.  Yes, tumors, plural.  Apparently her spine has quite a few tumors running up and down it.  This was nice to know, and not sure why this wasn't explained previously.  Of course, concerning, they set up an appointment for later that day to get mapped and then likely to start radiation treatment on Monday.  That was all dependent, however, on the discussion with the actual radiation doctor, that was still yet to come to see Tiffany.  However, this fellow did note that in the MRI scan she did on Wednesday night, they did find that her Sacrum, which is at the base of the spine, apparently was 'riddled' with cancer and the doctors where worried that it would break.

Of course, this new development was worrisome and did not help the emotional state of all those involved.

But the day was not yet done.

Eventually, the radiation specialist finally came in to talk to Tiffany.  He had taken a look at the scan and told her that yes, indeed there were some tumors up and down the spine, BUT, that they were a lot smaller and less consequential than the previous doctors had suggested.  In addition to that, he also said that most of these were there when they did the MRI scan 2 months ago and most of them haven't changed much in size.  He also noted that although he thought radiation treatment on the Sacrum would need to commence, the other tumors may be able to be fought with a chemo treatment. 

Oh, blessed news!  We of course have questions as to why we were never told that there were other tumors up and down her spine from two months ago, but this was mostly answered by another doctor a few minutes after the Radiation specialist left... Dr. Glenn showed up!

We have been working with Dr Glenn for a few years now, and being our main doctor overseeing treatment, we have created some bonds as well as some trust.  We know that she is qualified and has the experience to treat these rare cancers.  And with that in mind, there comes a peace of mind when she is involved.  We don't normally see her once we get admitted into the hospital as she has a team of doctors who take care of the inpatients.  But came she did and to me, at least, it was a bit of welcome news that she did.  She brought with her some even better news.

The news was this... the tumors are minor whiffs of a thing.... something not to be overly concerned about, and, that she thought she could get them with a chemo treatment rather than radiation.  You see, radiation treatment is not kind.  It doesn't just break down the tumors, but it also breaks down other tissue, including bones.  And this is not what you want if you can avoid it.  Chemo, is also mean.  But it has a different effect and Dr. Glenn believes it is the better way to go.  When Tiffany asked her what was next, Dr. Glenn put her hand in her pocket and pulled out a paper with a long list of drugs and options written on it.  She said to Tiff that she has been thinking all day of what to do and has been writing notes and possible drugs to use.

And that, friends, is why we love this Dr. Glenn.  We know that what we are battling does not have a documented method known how to fight this disease.  We are going off of her experience and expertise in fighting these rare T cell anomalies.  But above that, there is a compassion that she has.  We know that she is very busy as she runs the department, teaches, and works with patients, we know she cannot be watching over us constantly, but proof that she does think and care was in that paper.  And if that isn't enough comfort, the fact that there seemed to be quite a few different options on that paper gives us comfort as we continue down this path, knowing that there is more than one option left, and that we are not backed into a corner and only have the option of one treatment.  Yes, of course, we wish the treatments were one and done.  But we understand that this disease is not known and unknown how to handle.  We just hope and pray that this next treatment will work.  BUT IF NOT, we still have other options to get this cancer to respond.

So, not to belabor the point any longer, a decision was made and treatment began Friday afternoon.  She started a new chemo drug that is outpatient and will be administered every two weeks.  Normal time frame for this treatment is about 6 to 8 rounds.  It has similar side effects as most chemos.  It will cause her blood counts to drop (and will eventually rebound), will lose her hair (her hair has actually started growing back - the last treatment she had that made her lose her hair has been over two months ago - so it started coming back - just in time to lose it again!), and make her tired for a time.  Though the hope is that with her blood counts much higher than where we started back in January, the downs won't be quite so down and her good days should be better days than in the past.  Though time will tell and by early Monday, so far, so good.

She still has pain from last week, but the good news there is that they have found the right medications to give her the pain relief she needs to be able to function and enjoy life.  It was a rough week, probably her roughest.  But towards the end of it, it became the best.

It goes to show that miracles do come, but sometimes only after a trial of your faith.  And as exquisite was her pain, the week ended with a similar, but inverse, amount of joy.

We know there are so many people praying and thinking about us, it is overwhelming to consider.  We thank you and are grateful to call you friends.

Cheers,

Nathan

Thursday, June 12, 2014

CRASH! BASH! SMASH!


If the track is tough, and the hill is rough, THINKING you can just ain't enough!
~Shel Silverstein

This is how it feels.  You want something so bad, you hope and pray that everything will turn out the way you have it in your mind, then CRASH! SMASH! BASH!  And on to the rocks you go.  Mr. Silverstein said it here, in this little poem...

The Little Blue Engine
Shel Silverstein
The little blue engine looked up at the hill.
His light was weak, his whistle was shrill.
He was tired and small, and the hill was tall,
And his face blushed red as he softly said,
“I think I can, I think I can, I think I can.”
So he started up with a chug and a strain,
And he puffed and pulled with might and main.
And slowly he climbed, a foot at a time, …
… He would not stop — now he neared the top —
And strong and proud he cried out loud,
“I think I can, I think I can, I think I can!”
He was almost there, when — CRASH! SMASH! BASH!
He slid down and mashed into engine hash
On the rocks below… which goes to show
If the track is tough and the hill is rough,
THINKING you can just ain’t enough!

Well.. that is what I said it feels like.  However, I cannot say that this is how it is.

So, in the last post, I noted Tiffany was having some pain.  And this pain lasted into Wednesday morning while we got up and headed out to the doctors appointment.  Of course, the doctors aware of the pain the previous few days and the fevers she has had, quickly ordered a series of tests to confirm 1 - if it was bacterial, 2 - if it was cancer related, or 3 - possibly something else.  The consensus among the doctors supposed that it was cancer, and only time and tests would confirm.

After being admitted into the hospital, she was eventually taken to get a CT scan and then a 3 hour MRI, finishing up at about 11:30 pm last night (Yikes, not only was this late, but talk about an uncomfortable position and she said she was also extremely hot - poor girl).  This morning, they had confirmed that they found another tumor in her spine, at T7 (for those that know where that is - basically the middle of your spine).  And here, you would see the CRASH! SMASH! BASH! and onto the rocks we go... at least as far as our hope goes.  We were hoping beyond hope, and praying that they would end up finding nothing and come to a conclusion that it was simply the cancer causing pain and all we needed to do was to continue the treatment we were already then following.  Because at this point, emotionally and physically, the process can drain even the most positive of people.

But you see... after having talked to Tiffany, she corrected me.  There is no CRASH! SMASH! or BASHING going on.  Maybe against our hope, but not against our Father in Heavens plan.  She reminded me, as she often does, is that He is in charge.  He knows what is going on.  He hears the prayers of not just us, but the hundreds (and maybe thousands) of others who are praying for her.  Having received multiple blessings and many fasts done on her behalf - we KNOW He is aware of her and her situation.  She reminded me of that this morning.  And up the hill we go.

So sometimes, THINKING you can is truly not enough.  You are only part of the equation.  The more powerful part of the equation is the Lord and his plan for you.

And with that, chugging along in an otherwise beautiful landscape, she continues her joyous journey of life.

Cheers,

Nathan








Monday, June 9, 2014

C'mon... Can't we Just Have Normal Cancer?

Ha...

I laugh right now.  Because sometimes you just have to laugh at life.  And also the title.  What is normal cancer?  Isn't it where you get a diagnosis, you treat it with a few rounds of chemo and hope that it all works out?  So much for that dream!

I guess that is what I had in my mind.  Oh, sure, there are those moments in between treatments that are pure joy... when she has energy or when she has the big smile on her face.  And yes, we have had a good number of those days.  But just when things are supposed to be getting better, she starts to have days like yesterday.  And today.  And probably tomorrow too.

She is in some excruciating pain.  Debilitating pain.  The pain where she can't decide if it is better to sit down, lay down, stand up or walk around.  Each comes with its own kind of pain. 

Last Thursday she started to complain about some achiness in her joints, specifically her hips and knees.  This was a little concerning, but we were hoping it was truly because she had spent some time walking around with some friends. (BTW, friends, we are pretty sure that has nothing to do with what she is going through, I truly hope you can come and take her for walks and outings again).  But that would be more in her muscles, not her joints.  And with what happened at Christmas this last year, we have to believe there was a flare up of some sort to start causing this.  However, she lasted through Friday OK, and Saturday it seemed to flare up a little bit more.  She wanted to get to the Temple as she never is quite sure when she will get her next chance, and so after my siblings took the kids off for a night away, we took off to the temple.  On the way home she felt her pain start to come back a little stronger.  Sunday, she awoke to even greater pain, this time, debilitating pain.  She got up and got dressed, trying to go to church, but after doing so, the pain was just too hard to bare.  So she stayed home and rested - hoping to alleviate the pain in some way.

Well, day turned to night, and night turned into a nightmare for her.  She awoke at 3 am to some awful pain and took some pain medication to help.  But this time, it did absolutely nothing for her, didn't touch the pain, which to say was excruciating.  She woke me up and after some prayers, blessings, and a call to the doctor, we finally got some relief from a combination of all three by about 5 am.  And then she slept peacefully until late into the morning.  She has continued to have the pain and agony all day - but kept at bay with medication and a lot of faith. 

And so today - as I try to get through it sleep deprived and busy, I pose the question - Can't we just have normal cancer?

And the answer is - I think this is normal.  I would not be justified to suggest there is anything normal any cancer patient and family go through. But therein lies the crazy truth about cancer - there is no such thing as normal, I guess what we are going through is just par for the course - never really sure where things are going, until we get there. 

So Tiffany has been using the hymn, Lead Kindly Light, as fodder for her faith.  The line where it says, 'one step enough for me', has caused her to know that we take this journey, one step at a time, until we come to the 'calm light of everlasting life'.  A day she looks forward to with increasing intensity.

As I close this post, may God grant unto you your daily steps in this journey through life, I leave you with the full words to the Hymn...

Lead, Kindly Light
"Lead, Kindly Light, amidst th'encircling gloom,
Lead Thou me on!
The night is dark, and I am far from home,
Lead Thou me on!
Keep Thou my feet; I do not ask to see
The distant scene; one step enough for me.
I was not ever thus, nor prayed that Thou
Shouldst lead me on;
I loved to choose and see my path; but now
Lead Thou me on!
I loved the garish day, and, spite of fears,
Pride ruled my will. Remember not past years!
So long Thy power hath blest me, sure it still
Will lead me on.
O'er moor and fen, o'er crag and torrent, till
The night is gone,
And with the morn those angel faces smile,
Which I have loved long since, and lost awhile!
Meantime, along the narrow rugged path,
Thyself hast trod,
Lead, Saviour, lead me home in childlike faith,
Home to my God.
To rest forever after earthly strife
In the calm light of everlasting life."

Cheers,

Nathan

Friday, June 6, 2014

The Joy of Friends Along the Journey

"Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around."
~ Leo Buscaglia

The medications Tiff has been taking for her pain has also caused her to be very sleepy.  But, when she is active, she not only has pain relief, but also can enjoy life a little bit.  So a big thanks goes out to friends who have taken care of her, getting her out of the house and helping her to enjoy life a little.

Including the ladies below.

Sorry - red eye removal didn't work (And too lazy to get the real software out and fix it)


One of her friends grandmother just lives a few houses down from us (sweetest lady you'd ever meet) and this grandmother had a wheelchair.  This friend took Tiffany, the wheelchair and a couple of others out for a walk along the path in front of our home earlier this week.  They allowed her to walk as far as energy would allow, and then they all had fun pushing her in the wheelchair to the park and back - a 3 mile journey, laughing and enjoying the summer evening.

Tiffany came home with a smile on her face she hasn't had for a while and feeling like there was renewed life in her.

Whether a walk on the path, a trip to the zoo, or an impromptu BBQ with friends, she is finding that there are ways to happily cope if friends are involved!

A big thanks to those who have given of themselves and put a smile on her face - in turn - putting a smile on the rest of the family.

Cheers,

Nathan

Thursday, June 5, 2014

Waiting a Week

With her esophagus still giving her some pain while eating, as well as an emotional state that asked for it, Doctor Glenn has given Tiffany another week reprieve before starting the next round of chemo.

We went in for our appointment, bags packed, schedules for kids and Tiffany-sitters set, and were going through the normal hospital motions.  But that all said, Tiffany has been feeling a bit more anxious as this process wears on, having to pump herself up to start the next treatment or take the next test. So when Dr Glenn suggested we could take another week before the start of the next treatment, she was relieved, and a little overjoyed that this could happen.

Also - a couple of other pieces of  good news...
1st - her blood counts and platelet counts are up, which suggest the treatment is working.
2nd - Dr Glenn suggested that we would go through this next treatment and then start doing some scans and tests to see if we are ready for the bone marrow transplant.  We were a little worried that this could go into more rounds of chemo, and while it still could, the fact that we are moving towards bone marrow transplant is great news.

That is all I have today... but I know many of you were aware she was supposed to be in the hospital this week - so this is to inform you that this is no longer the case and it will now be next week.

So, Cheers, and have a good day!

Nathan