Friday, December 27, 2013

Farewell 2013, You Will Not Be Missed!

Yet, taught by time, my heart has learned to glow for other's good, and melt at other's woe. 

It's only been just over 9 months ago that I posted on this blog.  But recently I had this thought after a discussion with Tiffany that I really ought to try to write in it, and then continue to write on an ongoing basis.  You see, putting down thoughts in words allowed me to think through the mess we were in, sort it out, and spit it back into my own mind in a way that helped me see the larger picture.  Therapeutic I guess, in a very emotional way. 

But there is another reason, one I should have known well before now.  When going through the situation Tiffany is going through, she often finds herself putting on a smile while internally she is stricken with pain, fatigue, and worry.  But when she is out and about, she tires of telling people how she is doing and therfore many times she says that she is 'fine' when indeed she is not.  And that, I decided, weighs terribly on somebody.  Especially when she feels like a broken record.  How many people want to here that you are doing terrible?  And what if every time the same person asked you you said the same thing, terrible?  Eventually, this person figures there is no sense in talking to you because 1 - they already know what you are going through (because the answer is always the same) and 2 - they don't really know what to do for you any how and to approach someone with a question you know what the answer will be, a question that you know not how to help, well, sometimes it is easiest to avoid the situation all together.

So Tiffany says she is fine.  For the reason stated above, but in part because she has hope that it will all turn out that way.  But I write - so you will know what she is going through, because what she goes through is lonely, and the only way to not make is so is for others to know.

So what is going on, you ask?  (I heard your question)

Since some of you aren't aware of what has happened since the last post, let me quickly catch you up to speed (note, I won't bore you with many details so just the main issues that have happened)...

 First - Shingles - she came down with Shingles on the left side of her body in April.  And oh, what a terrible time that was.  Shingles, for those that don't know, is basically the chicken pox virus reaking havoc on an adult.  Once you had chicken pox as a kid, your immune system figures out how to fight it and is always keeping it at bay.  However, when your immune system is compromised, like when you take Chemo that kills off the white blood cells, the virus roars back and can attack.  She was in the most excruciating pain for 4 weeks and then it finally started to back off.  However, still to this day she has a few spots she continually has to itch, residuals from the shingles. 

Second - Transfusions.  One of the last posts I suggested was that she had her first and hopefully last transfusion.  Well, our hoping didn't get us far as she has had multiple transfusions.  Every couple of months through the chemo treatment, her blood count would drop low (anemic) and when it got to a certain point, the doctor would order a transfusion.  The last couple of transfusions she had, we both didn't need blood tests to tell.  She just got overly tired, cranky, and not always thinking straight.  Yes, the chemo made her quite tired, but as her anemia would lower, we could see even more tired than 'normal'.  At that point we would try to get into the clinic to get her blood tested and if it was at a low enough level, they would send her to the transfusion room.

Third - the white blood count had lowered itself down and other measurements where lining up and the Doc opted to pull her off the chemotherapy.  It was a joyous occasion and one we were excited for.  They took her off in the middle of October and we were hopeful and even expecting, a great turnaround.  Well, the good news is her white blood count has stayed mostly down, but her red count seems to not be rebounding like we were hoping.  Since she has been off chemo she has had to go back for a couple of transfusions, one in November, and then another one about a week ago.  The doctors have intimated that she may need to go back on it as there are signs that suggest it hasn't done what they were hoping for.

Note however, that this last transfusion may have something to do with cold she has had for a few weeks.  Or so we are hoping.

That all said, this cold she has, has taken what would seem a turn for the worse.  Last Sunday, she started to suggest she felt like she did right before the shingles came upon her.  On Monday, as she was doing some cleaning, she started complaining about some pain in her left knee and shoulder.  By Tuesday morning (Christmas Eve) she could barely walk, and when she tried, she was in 'the worst pain ever' (even suggesting labor pains would be the only similar pain she has felt).  So up to Huntsman she and I went and they started doing some tests.  Everything came back normal and the doctors suggested it was likely the cold virus she had, had moved into her joints.  But, to make matters worse, her platelet count was way down (in the 50's)  and therefore couldn't take Ibuprofen but due to her liver (oh yeah, we had to go see a liver specialist in early December as there are some abnormal liver enzymes in her blood test - so far that specialist is hoping it is damaged due to the chemo and that the liver is a hearty organ and should rebound with time) cant take heavy doses of acetaminophen.  So pain management has been aweful and Christmas she was on the couch in pain for most of the day.  It does seem to be letting up, but there is still a lot of pain.  We were told to contact Hunstman next Monday if it doesn't let up.  We are hoping she will feel much better before then.

Like I said earlier, if you talk to her, she will have a happy smile and a good disposition.  She is trying to show the world what she wants to feel.  But for those of you who want to do more - know this - it isn't in helping clean the house, or even bringing a meal over, both of which we have had plenty of and have been very grateful.  The best thing anyone can do, is to talk to her.  Listen to her, and share your empathy for her.  She is going through what is a very lonely place.  Don't let her tell you she is fine.  Ask her specific questions.  She will open up, and doing so, you will become as our Savior, helping her bear burdens that she has sometimes feels alone in bearing. 



Friday, March 22, 2013

Good News and Happy Attitudes

"I am determined to be cheerful and happy in whatever situation I may find myself. For I have learned that the greater part of our misery or unhappiness is determined not by our circumstance but by our disposition."
~Martha Washington

Life is littered with good and bad all around us.  Sometimes, we filter out the good and all we see is the bad.  Do this enough and your life and demeanor will match that what you see, an aweful mess and unhappiness.  I think, those that are happy, filter out the bad.  Yes, it's there, but there is generally no need to get mired in it, mucked up and dirty.  A smile, amidst the misery of life, will brighten all those who come in contact with it, but more importantly, will most happily affect the one who smiles.  

We met with Dr. Glenn and her staff yesterday up at Huntsman.  They did their blood tests, reviews and checkup on Tiffany and gave us good news.  Tiffany's white counts have dropped back to her November tests.  There are many other indicators that suggest we are not out of the woods at this time, but a lower white count shows improvement.  This is good news.  Smiles all around.

So we continue on this journey.  Ups and downs, but it seems things are looking up.  The medicine is doing what it is supposed to, and though Tiffany continues to be overly tired and nauseous, thanks to the chemo drug, she continues to look forward to the day she can stop taking it and lead an otherwise normal life.  

But until then, she still flashes her beautiful, contagious smile.



Friday, March 15, 2013

The First (and hopefully last?) Blood Transfusion

So I haven't written in a week.  And I wish I could say that is because there was nothing to share or because of the lack of news.  Really, it was quite eventful.

Tiffany went in to get a blood draw on Tuesday at the local oncologist while fighting a low grade fever and headaches from what we thought were due to the anti nausea drug she has been taking.  After they scanned her temperature at 100.9 degrees and a check of the blood counts well below normal, they told her she needed a transfusion.  Due to the high temperature, she was instructed to go to HCI to get checked out and treated.  So she called me up and off we went, thanking good neighbors, again, for watching Porter as we left.  When we got down there, again, she was taken away for blood draws and temperature readings and, luckily, her fever had reduced enough to not need additional medical attention other than a blood transfusion.  So they took samples of the blood so they could type it for the blood transfusion that they would do the next day.  Because her fever had gone down, they opted that because it was already about 6 in the evening, it would be easier, we thought, to do it the next morning.

So home we went were Tiffany had a hard night sleep with headaches and constant stirring and finally woke up to leave by 8 Wednesday morning to have her first ever blood transfusion.  We arrived at the appointed time and quickly found out that she had taken off her wristband from the night before which we were supposed to have been told to leave on.  Since nobody told us and she didn't have it, they had to retake her blood and type it again.  You would think they could confirm that this indeed was Tiffany, the same person they pulled blood from the night before and the typing they did the night before would match her and work just fine.  But, apparently, to be safe, that can't be done.  So more blood was drawn and set us back an hour and a half to two hours while we waited for it to be typed and matched again.

Once they had the right match of blood they started into it.  Now, I have never needed a transfusion, and she never has, so as they let loose the bag of blood, dripping through the tubes, it was, in some small way, kind of scary.  You are told all your life to always protect yourself from somebody elses blood for obvious reasons and the one person I know who had a blood transfusion ended up getting hepatitis B from it.  So it just seemed a little crazy that she just sat there and had blood from some stranger dripping into her, freely done.  But, grateful that somebody had done so, so she could be helped.  Her red blood count was down substantially where it should have been, largely due to the chemo she has been taking, and without this transfusion, she just felt out of it; tired, lethargic, and just a feeling of inability.  She had worked out earlier in the day on Tuesday, and she said she felt like a 'wimp'  and just couldn't keep up during the workout and fell asleep on the fly later after she had showered and laid down on the bed for a second. 

That said, she was in generally good spirits sitting in the infusion room, getting poked, prodded, and checked every 15 minutes or so.  Our friend and neighbor, who is getting treated for breast cancer, arrived sometime after noon for her chemo infusion.  It was nice to see a familiar face and she came to chat with Tiffany before she, herself, was called in for her treatment.  Our prayers go to her and her family.  They have a newborn and her treatments, though I can't say is better or worse than Tiffany's as they are different type of treatment, will keep her down for many days.  She had good spirits about her and we were grateful for her upbeat nature and disposition among the many issues she has to face.  By far, a blessing for us to see how somebody goes through a similar trial with courage while facing this ugly disease.

Well, after two units had dripped dry, they patched Tiffany up and sent her on her way.  She was feeling much better in many ways, but she quickly noticed her ankles and legs started to swell up.  After walking around for a bit, and even heading to the car to go home, we decided we better go back and make sure everything was OK.  The nurses on hand couldn't think of anything wrong, but they called the doctor up and the doctor confirmed that nothing they did that day should have any possible issues.  The doctor had us go home and watch her and call back in the morning.

Thursday morning came and she still had swollen ankles, but due to the the lack of other symptoms, the nurse she talked to said to continue watching for other symptoms but they can't think of what is going on.  And now, Friday evening, she just awoke from a nap and still has swollen ankles.  We are, of course, concerned, this isn't normal, but for now, it doesn't seem to be getting worse and she is still able to move around normally.  So we will watch it this weekend and wait and see.

She has another appointment on Monday for a blood draw and transfusion, IF she wakes up and feels like she did earlier this week.  If she is feeling fine, they told her to wait and come in on our normally scheduled appointment next Thursday.

So, for now, she would appear to be in good spirits, but tired and nauseous and ready to understand what this is all about.  We all would.  But until we find out, a smile and a cheerful disposition will get her through about anything.

That and many good friends who make it all that much more bearable!  Thank you all who have helped us, we appreciate it.



Friday, March 8, 2013

A Little Peace and Thankfulness

What do you do when you are taking chemo for cancer and three of your four children get sick?

Head to moms house, of course.

We had my brother and his wife stop in last night on their way up to Grandma's funeral.  In the middle of talking with them, I had to get up three or four times to go help Porter deal with his stuffy nose, croupy cough, and cranky ways.  The second time I was helping him, it dawned on me that Tiffany can't hang around here any longer than she needs to, and since my brother was heading up towards her parents home, why not send her along with them?

She readily agreed, not wanting to get sick and then having to get treated for it along with everything else she is being treated for and my brother and sister-in-law didn't bat an eye at the idea.  So today, at least, she should be well enough away from the kids and give them one more good night of sleep to get over their colds/viruses and allow us to sanitize the house for her return.

We are appreciative to all those who have stepped up and have been good to us.  Not only due to recent events, but also life long friends and family who continue to show love and charity towards us.  We hope we can take care of ourselves most often.  But there are times I am glad we have friends, and especially family, who are willing to go a little out of their way to help us out; drive Tiffany to her parents house, take her in for some time, driving carpools, bringing pizza over, watching kids, and the list goes on.

Thank you.

You may never understand what a blessing you are in our life.


Thursday, March 7, 2013

When We Practice to Decieve

The other night, Porter, 4, almost 5, was called upstairs for family prayers.  As he walks into the bedroom, he is licking his fingers, and Tiffany asks, 'What were you eating?'

Porter thinks for a couple of seconds and says,

'Um, nothing.'

Tiffany asks again, 'Porter, what were you eating?'

'Um, an apple.'

We haven't had any apples for a few days now, so not only is our 4 year old lying to us, he is trying to deceive us.  Two very different things, I think, neither one a good characteristic to have.

Tiffany threatens no TV or computer the next day and asks again, 'Porter, what were you eating?'

'I'm thinking!,' came his obviously frustrated reply.

Why he has to think about this is beyond me.  No doubt trying to figure a way out of this predicament.  But alas, after TV and computer have been taken away, he finally succumbs to forced humility and says he had stuck his hands in the sugar jar.

Not a grave sin, though he knows better not to.  Funny, had he just told us what he did to begin with he would have been told simply not to do that, and we would have moved on.  Instead, some of his favorite things have been taken away.

I wonder, do we do this often?  Perhaps in not so simple a manner, but do we do things that we ought not, and when caught, instead of owning up to it we come up with silly answers that our Father in Heaven shakes his head in disbelief as we try to wiggle our way out of the situation?

An interesting and possible thought provoking question on how we act.

"Oh, the webs we weave, when we practice to deceive."


Wednesday, March 6, 2013

The Beat Goes On

Two days into this whole chemo thing, and Tiffany is sleeping more than normal.  She ended up taking three naps yesterday.  She has noted that though she feels tired like when she has been pregnant, her motivation to get up and do things, is not the same.  That said, she has noted she isn't sure if it is the chemo, the cancer, or the slight cold she has had for many weeks which continues to drain her of her energy.  Likely a mix of all three.

I have a friend at work who has been fighting cancer for about 6-7 years, and has had a similar chemo regimen, though I don't know how similar or how different.  In talking with him, he said to expect this.  There will be days that she will feel able to get up and do things.  There will be days she won't. 

So as we start to get into this new way of living, it is still too early to know how this is going to effect her, but early on, it would seem she is worn down through physical fatigue, though there is likely some mental fatigue as well.

Hang in there, sweetheart, we will make it through this - together.



Tuesday, March 5, 2013

...Survey Says?

Almost 24 hours into the first dosage and Tiffany is generally fine.  We didn't know what to expect, honestly.  She did get a little nausea last night, but after waking up this morning felt mostly refreshed for a new day.  She even tried to go workout.  She came home from that suggesting it took more out of her than she expected, but from everything we have read and from what the doctors said, she should be doing these kind of things.  We are sure that as more pills are popped and she has been on the drugs for a while, she will likely feel the effects of it more, so only time will tell how this will affect her.

That said, just as she began this treatment, Logan ended up staying home sick from school with a fever and a cough.  And now, Tiffany just left to go pick Dallin up from school as he called saying he is sick.

And so begins our new life with pill popping Tiffany; quarantining the kids every time they get sick.  The kids want mom when they get sick, now they get dad.  There is just somethings that moms know how to do that dads just don't.  Sure, we dads can treat them just as moms would, but when you are sick, they need mom, and there's no replacement for that.
Lucky for me, they should survive any way.



Monday, March 4, 2013

The First Dosage

***OK, for those that read this, know this, we use this blog as much for our own journal recording and personal use as we do to keep friends and family informed.  So some posts may seem silly or trite, but we are recording it for our purposes and if you find any benefit, more power to it.***
Today, just now, Tiffany took her first dose of the Chemo.  It felt kind of odd last week as we walked out of the doctors office with Chemo in hand since when we went in, we had 3 years of mystery behind us and were surprised the quick turnaround of events.

Since pictures are a thousand words, here are a few paragraphs in pics of Tiffany with her first treatment pills, and taking them.  Awe inspiring, no?  :)

Tiffany with her first set of chemo pills - In HCI elevator - what better place for a picture?

Taking her first pill.
Washing it down.  Mmmm... Poison!



She was 91.  And yet, it seemed like it was too soon.  Too many lives depended on her courage, her wisdom, her love.  She went around doing good, always cheerful, always smiling.  Even the past few years as her physical abilities waned, her mental capabilities were sharp and the attitude of happiness never faded.  The concern for others was strong, never minding her own ailments, just hoping for others to see it through to a sunny day, even if the clouds that hung over her were dark and grey.  She was indeed the very embodiment of charity.  A character trait that seems too few seek for, and even less achieve. 

It was January 4, just two months ago, we had just had an MRI done, but no follow up appointment had been done.  We were struggling setting up an appointment with the correct neurosurgeon and somewhat frustrated in our attempts.  Tiffany and I were keeping most of the information quiet until we knew more, when we received a phone message upon our return home from one of life's activities.  The message, sweet, simple, yet somewhat lengthy, was essentially this...
'Tiffany, I haven't talked to you for a while.  I wanted to call because I thought I should call you.  Wanted to hear about your health, hoping all is well.  Love you, good bye.'
Grandma knew something wasn't right.  She always knew when things were amiss.  Always new when a phone call, gift, or note was needed, and never seemed to hesitate to do something about it.

Almost 14 years ago, I brought Tiffany with me as I went over to help Grandpa with something around the house.  We had recently started our summer fling (which, BTW, has been the longest summer fling ever!) and though the relationship was new, she came with me to meet my grandparents.  Tiffany noted then, and many times since, how welcome she was made to feel, and how a friendship ensued.  Grandma would call Tiffany out of the blue many, many times over the years.  Tiffany would do the same.  I am sure the bond was no different than many others Grandma had within the family, but it seemed special to Tiffany.  Grandma had a way of making you feel special.  And we will always feel her love.

You see, my Grandma Miller, slipped away into the world beyond last night.  We were lucky enough to have made it to her bedside yesterday before she moved on and whisper in her ear our final good byes until such time the opportunity arises to be together again.  We left, not knowing how long she would remain around, but leaving while a large contingent of family was with her.  There was a longing to stay, it didn't seem right to leave, but with a small brood of young children, we knew they would only last for so long.  We received word 3 hours later that she past peacefully from our world to the next surrounded by loving family members, both those physically there, and the many that were unable to be.

Grandma, we will miss you and look forward to the day we will meet again.

Until then, we hope you enjoy your journey in the world of spirits, and we will try to do the same without you here.



Friday, March 1, 2013

Expect the Unexpected

Life is a best selling novel, being written as we live it.  The plots and twists, as in any best seller, has many surprises as it weaves in and out of the many story arcs that keep it interesting.  But in this book, the surprises often surprise the author in spite of the challenges that they go through while writing it.  Never knowing what is on the next page or chapter, good or bad, makes for a thrilling read, if not an emotional roller coaster.

We went into our appointment with Doctor Glenn at Huntsman Cancer Institute (HCI) with a little trepidation and a lot of hope.  Admittedly, Tiffany and I both were gearing up to look forward to whichever the outcome was to be.  We figured that there were 2 options, with a possible third, on the table for discussion in our appointment.

Option 1 is what we have been dealing with for 3 years now, that Tiffany is a 'mystery' and we would continue to do more tests and be patient.  Frankly, we are tired of 'not knowing' what is going on.  We decided, however, if the news was option 1 we would take that as an opportunity to try to live better, with an added dose of meaning and purpose in everything we do until the day came that we could figure out what the heck was going on.

Option 2, in many ways, was worst case scenario, but based on the original diagnosis two years ago, this is the way we have been heading. This would mean heavy chemo, weeks spent in the hospital, finding a matching donor and doing the bone marrow transplant, all with the hope that it could eliminate the cancer and beat the odds with the hope for a bright future.  Rolling the dice on this one was, well, dicey, but at least we would know and then we could do something about it.

Option 3 was our hope, that it would be something aside from the original diagnosis, and option 1 or 2 would no longer be on the table.  Our focus was on preparing for the first two options as it would seem that those were most likely based off the previous discussions we have had with doctors.  To know what is going on, and for it to not be Hepatosplenic Lymphoma, would be exciting news in almost all scenarios we considered and hoped for, but tried not to tempt fate by hoping too much.

So, the results from the tests came back and after consulting with a consortium of doctors, Dr Glenn and her staff have decided she is no longer a mystery and does not have Hepatosplenic lymphoma!

It was determined that she has T-Cell Large Granular Lymphocyte (LGL) Leukemia.  There are many similarities to this and the Hepatosplinic lymphoma, but as the pathologist looked at it this time, apparently there was little doubt that this is LGL leukemia, in large measure because after a couple of years, the number of cells they could look at were much more numerous and more easily identified.

Leukemia, for those that don't know, is the general term for malignant cancers of the bone marrow or blood producing cells.   LGL Leukemia is a rare (what else is new) form of leukemia, generally known for its slow growth and inadvertent discovery.  Though there is not a lot of reported cases, it shows to be treatable, though Dr. Glenn suggests it is not curable.  Note, when we say treatable, it means that Tiffany should be able to live a generally full, long life without a lot of side effects to the treatment.

That is not to suggest this will be a cake walk, but when compared to the path we were looking down, this is a much better way of going. 

Treatment begins right away, with a small dosage of an oral chemotherapy drug.  Tiffany has been dealing with a cold that has lasted many weeks, and the doctors are sure that part of the longevity of the cold is the bodies inability to fight it efficiently.  Her immune system is somewhat compromised.  She has had a small fever, and as with any cancer patient, fevers and cancer treatment don't mix, so they have put her on some antibiotics and want her to start taking the chemo in the next day or two.

The side effects of this drug is fatigue, and with the small dosage amount she will be taking, will likely see little other side effects, though thinning of the hair is possible as well as a few other odds and ends (which we will spare you the minutia of such).  She will be taking it daily for 6-12 months, and assuming it does what it is supposed to, should go off of it without other treatment.  As this is a treatable cancer and this treatment is just to hold this disease at bay, it could possibly come back within a few months or years after treatment, which we would then start into it again.  However, it is possible it may never really come back, but she will likely always be tested for it throughout her life.

There is a slight chance that the treatment won't work, but the good news is that with this cancer, there are other treatments available, and as Tiffany is still young, many options are available if it goes this direction.

We don't know how fatigued she is going to be so only time will tell once she starts up on her regimen of daily pills, but lately, she has been napping quite frequently in part due to the cancer as well as the sickness she has had, so we joke that things won't change much, though we will keep you informed of what is going on as it progresses.

Is this story arc of her life with cancer over?  No, indeed it may never be.  But the last few years have been interesting and defining.  There has been a lot of change and growth for all of us in that time frame which we think have made us better people.  It has lead us to our knees more often, searching answers through faith, blessings, and scriptures.  The faith shown through prayers and fasting from many friends and loved ones have been amazing, and we feel the blessings of the Lord upon us.  We don't know what is next in this continuing saga, but we have come to expect that which is unexpected.

And for now, happily enjoying the twist in the plot, along this, our joyous journey through life.



Thursday, February 21, 2013

Next Steps

Just a note for those that want to know what is next.

It is simply the waiting game. 

The bone marrow test results take time.  They have to incubate or something for a specified amount of time and there is no way to hurry it up.  The PET scan should already be back, and perhaps Dr. Glenn has maybe even already looked at it.  The initial purpose of the PET scan was due to some abdominal pain Tiffany had been feeling just below her rib cage.  The doc suggested that she expected to see nothing, but with Tiffany's past (for those that may not have known, there was Melanoma found, and successfully removed back in 2003 - though once you had it, you have a higher chance to see it later) and current situation, she doesn't want to leave any stone unturned. 

Our next appointment is next Thursday, February 28.  Which we should have the info back from the tests and have a better idea of what will happen next, or at least the options open to us.

And with that, we will enjoy the next week - trying not to think about the results or what they could mean.  Because, why should we allow peace to be destroyed by what may or may not be?

After realizing how precious life is, we won't take for granted the good times we have together.



Wednesday, February 20, 2013

Biopsies, Children, and Gratitude

So Tiffany and I got another date yesterday.  They have been happening with increasing regularity and decreasing intervals - thanks to all these doctor visits.  We got up yesterday morning early to head off to Salt Lake City to the Huntsman Cancer Institute (HCI) for a Pet Scan and a Bone Marrow Biopsy, alluded to in an earlier post.  We left around 5:30 am and had most of the kids up (Dallin, a preteen, is showing his age - sleep is becoming his favorite past time - especially in the mornings) and had them mostly ready for the day before we left.  Aside from getting their breakfast and taking care of Pogo (our pup), they didn't have a lot more to do.  At about 8:00 they took Porter to a neighbor's house to babysit him before they returned home and waited for their carpool to arrive.

You see, gratitude comes when you realize that two years ago, for us to leave so early, would have been a greater miracle as we would have had to do something way different than how it was handled, likely with even more help from outside sources.  But having all the children two years older and two years more mature, we are able to leave them in these instances which makes it easier on all of us.  We are indeed grateful for the independent people our children are growing up into. 

Of course, that comes with a tinge of sadness.  Who wants their babies to grow up?  (Ummm... maybe us dads, but I  know that Tiffany would ask that question - so I posed it for her.)

We are also grateful for all the willingness of those we get to call friends and family, who have opened their arms, taking care of kids, carpooling them, letting them stay and play, etc.  We had numerous people help us yesterday and even had to turn away a helping hand or two, as we had so many blessings, and not room enough to receive them.  Of which we will always be grateful and appreciative to all of them. 

And for the fasting and prayers that have been offered on Tiffany's behalf.  Thank you.  The bone marrow biopsy went rather well and she is recovering from it, slowly - but surely.  If you were to ask her how it went - I think her response would simply be - 'it's over'.

For now, anyways, it is.



Tuesday, February 19, 2013

Tender Mercies

Right now I wait outside radiology at Huntsman as Tiffany is getting her PET scan. A PET scan, interestingly to me, uses a radioactive dye that is injected into the patient which highlights cancer cells as they do a CT scan. The dye, however, makes her radioactive and people can't come near her for some time.

When she is done with that, we will go down a flight of stairs for a bone marrow biopsy - one that she is not looking forward to. They hurt! But, as we discussed last night, another day and it will all be over. Amazing how the passage of time gets us through things. As do the many tender mercies that are all around us.

We had just finished our church meetings on Sunday when we passed by this sister sitting in the foyer couch. We had known her since we moved in over 8 years ago. Though we can't really say we are very close to she or her family, we can call each other friends. Back when we moved in, we were in the same ward (congregation) and I worked with her husband in many missionary efforts. But within the year, the ward had split due to growth and we no longer saw each other on a consistent basis, allowing us to lose the close ties we had created, though always able to pick up where we left off.

As we passed her, we said hi, and made a comment about how her daughter was all grown up (the daughter was an infant 8 years ago) and how time flies (we swear it seems like yesterday when this daughter was crawling around the Sunday school we attended together).

She smiled as we started walking out the door.

But as we were just about to leave, she jumped off the couch and stopped Tiffany. She looked into Tiffany's eyes and said,

"I feel that I need to tell you that I am glad you are still here."  And continued to say that she felt impressed that everything will be ok.

The moment between her and Tiffany was a sweet and tender one. She doesn't know what that meant to Tiffany, but we are sure this sister did not know Tiffany's current situation. It made an emotional and spiritual impact to her as it continues to prove that our Father in Heaven knows of our concerns, our afflictions, and our joys.

And so we continue to see the tender mercies of the Lord, who provides them for peace and comfort, as we continue down what we see as this joyous journey of life. Grateful there are people who are in tune to the spirit that allows them to be guided to share their life with others.

Are you one of them?



Friday, February 15, 2013

The Joyous Journey Continues

*Just a note - a book follows.  No apologies, just a heads up.*

“You never really know what's coming. A small wave, or maybe a big one. All you can really do is hope that when it comes, you can surf over it, instead of drown in its monstrosity.”
― Alysha Speer

So here we are, a year removed from our last post, and we find that there has been much activity in regards to Tiffany's health that we must begin anew and update all who wish to know what is going on.  Up until recently, we have been sufficiently happy with telling all who ask that all is well, that we are enjoying the miracle we have been given.  And a greater truth would be hard to find.

The miracle was this... That every day we got to be with Tiffany, was a day worth celebrating, and the fact that we were not held to hospital visits, home bound holidays, or scheduling outings between doctors appointments was a marvelous miracle we have thoroughly enjoyed.

But, as it often does after a good period, dark clouds move in and obliterate the rays of sunshine streaming onto our little family.  Lightening hasn't struck, nor has the rain fallen, but as the breeze picks up the threat is upon us and we are moving to shelter as we prepare for a storm.  The size of which, has yet to be determined, nor the damage it will cause.  But shelter is being found due to the auspice site of the approaching storm.  Faith is being strengthened, prayers are being said, and we are doing everything short of demanding another miracle, as that is not ours to demand.  Hope, yes.  Demand, no.

About a year ago Tiffany started complaining of a pain in her back.  She had been exercising and we wondered, somewhat, at the time if this was something she did as she was running or doing aerobics.  The pain initially was subtle and infrequent, but as time passed on, it seemed to grow both in intensity and frequency.  Tiffany ran a half marathon with her sister at the end of August, and though she was in good shape and felt great through most of it, her back seemed to be especially painful after the run.

During this whole time, she has continued to visit her doctor on a regular basis to get check ups and run blood tests.  Around January 2012 there was a concern with her platelet count dropping a bit and he asked for her to come back every couple of months.  Towards the end of the year, there seemed to be no hint of anything going wrong until the November checkup.  During that checkup, there was an indication of continued platelet drops which concerned the oncologist and made mention that he would likely be asking for a CT scan after the next checkup in January or February.  Not really so much out of concern as it seemed that time had sufficiently passed that he wanted to check a new CT scan and compare it to the one she had a year ago.

Meanwhile, her back continued to ache and give her problems.  She had asked the oncologist about it once or twice, but he mostly blew it off as a little concern, something more for her family doctor to look into.  At the beginning of December, Tiffany's back started giving her problems to such an extent that sitting was uncomfortable and sleeping on our otherwise comfy bed would prove to exacerbate the problem and I would find her sleeping flat on the floor on numerous occasions.  The discomfort of the floor was less than the discomfort of her back in the soft bed.  Finally, after much consternation and stubbornness, Tiffany decided to talk to a doctor about it.  We were hoping that we would find a slipped disc, out of place due to her exercising or something, and that we would just move forward and work on that little issue along with everything else she has been dealing with.  However, in the back of our minds (mostly hers - I was honestly simply hoping for the slipped disc issue), was a slight concern of a mass that was found in her back two years ago when she received the PET scan prior to her splenectomy two years ago.  The results from that suggested there was a small mass in her spine, which our doctors at the time blew off as the issues at play at the time were much more pressing and urgent and this appeared small and inconsequential.

To make a long story short, she went to the family doctor in December after she had tried to talk to the oncologist, and understanding her history, he ended up ordering an MRI.  The MRI showed the mass on her spine as indicated by previous tests and the family doctor took this sufficiently serious and referred us to a neurosurgeon in Ogden.  As this was Christmas time, this neurosurgeon or his staff didn't get back to us for a week or two and once he did, he suggested that the placement of this mass was of such concern to him, that he didn't want to touch it and suggested we talk to the chief neurosurgeon at the University Hospital in Salt Lake City who dealt with more cases similar to ours.  However, the fact that Tiffany was not a patient of this initial neurosurgeon proved problematic as they had no info to give her off to the University Hospital which delayed a response from them, obviously to our frustration.

Through this, Tiffany ended up having an appointment with her oncologist to get a routine check up and blood test.  The blood test showed a spike in her white blood count to levels much higher than normal which caused the oncologist to order the CT scan - targeting her liver.  That was completed the last part of January and we went back to the oncologist to find the results.  The CT scan had nothing new to report from previous reports.  But as the oncologist talked to us he suggested that he didn't believe the pathologist reports.  In the report, it suggested her liver had small pockets of fatty tissue on her liver, and suggested this was normal.  The oncologist suggested that he would expect to see fatty tissue on somebody who was diabetic or on the obese side of heavy - of which Tiffany is neither.  To find out what those pockets of fatty tissue are, a biopsy would have to be done, the CT scan just shows that something is there.  He then showed us a couple of graphs of the blood tests she has been given over the last couple of years.  He said his concern wasn't so much the spike in white blood count as it was the continued increase in white blood count since her surgery two years ago.  It has been a relatively steady rise while her platelet count, which initially jumped to normal levels after the spleen had been removed, had continued to decrease to concerning levels.  The white blood count jump and the mass found through the MRI had just been the final straw that put the doctor in a position to finally do something about what he had been seeing all along.  He was sufficiently concerned and suggested we needed to talk to doctors up at Huntsman Cancer Institute with consultation with him for what the next steps should be.  We have been waiting and watching for a couple of years and things continue to appear to not be getting better, and since this is not a normal case, he wants to get a gaggle of doctors together to come up with the next steps.  Normally, he suggested, with the blood counts he sees, he would likely be treating Tiffany with chemotherapy and would have likely already done so.  The fact that other symptoms that should be showing up consistent with the original diagnosis are not showing up (such as waking up drenched in sweat, fevers, headaches, etc) he has not wanted to treat her as she is living an otherwise normal life.  But his concern for her well being is evident as the blood tests suggest that something needs to be done.

So he got us in contact with the chief neurosurgeon at the University Hospital and with Martha Glenn at the Huntsman Cancer Institute.  We had two appointments that happened earlier this week.  Tuesday we met with Doctor Sarah McEvoy, from the neurosurgeons office, and met with Doctor Glenn on Thursday.

Doctor McEvoy looked at the scans and is 95% confident that the mass in Tiffany's back is a Peripheral Schwannomas Nerve Sheath Tumor.  And from what we understand, this is good news as this is benign and though surgery will likely have to take place some time, for the time being we can treat the pain without worry of it doing additional damage.  Dr. McEvoy suggested that this tumor has been in Tiffany's spine for many years, maybe even a couple of decades.  It has either gotten to the point where there is a bit of pain now, or the area has been inflamed due to outside influences (sickness, exercise, lack of exercise - a myriad of reasons).  Either way, we have opted to currently deal with the pain, wait another three months, have another MRI done and compare that to the one she just had to see if it is growing and if so, at what rate.  Once we have that information, we can then make decisions as to what to do next.

However, after meeting with Dr. Glenn on Thursday, there may need to be additional considerations depending on what happens in her office.

In meeting with Dr. Glenn looking into Tiffany's blood count and other cancer considerations, she suggested that the blood counts aren't helping our cause, but that she wants to have another bone marrow biopsy, a liver biopsy, and a PET scan (Tiffany has recently had sharp pains under her rib cage and Dr. Glenn wants to rule out some things - hence the PET scan).  The assumption that Dr. Glenn has, is that we will likely see similar diagnosis as we had two years ago and with the current state of blood counts, it is likely time to start doing something about it, meaning chemotherapy treatments and a bone marrow transplant.  We were hoping that in the two years since the original diagnosis we would see some different treatment for this, but though we didn't hear that, Dr. Glenn did suggest that there is more information now that the treatment is working. 

Of course, more information as to what the next steps will be are forthcoming once the test results are in.  To that end, we are seeking the strength of prayers from those that are reading this.  Faith precedes the miracle.  And faith is shown in many ways, but prayers are one way people can help when nothing else can really be done.  Again, we do not wish to demand a miracle, though we would be pleased if the tests came back clean.

(Though, in some small way, this would exacerbate our frustration - why would the blood counts be helter-skelter if there wasn't something causing it to be that way?  We would likely just have to endure more tests until an answer was found.  Sometimes, answers, even ones we don't want to hear, are better than no answers.  Sometimes.)

 As dark clouds gather, and the portent of a storm is around us, I wish to share something that Tiffany said about a week before this all started crashing around us...

She had been preparing for a lesson in which the Jaredites were crossing the ocean in their boats put together with the help of the Lord.  The story is told that the 'ships were tight like unto a dish' and they were tossed to and fro by the waves of the sea towards their destination - caused by the Lord himself.  And they were 'buried' many times in the depths of the sea 'because of the mountain waves which broke upon them, and also the great and terrible tempests which were caused by the fierceness of the wind'.  But - after 344 days - they arrived to the promised land.

Tiffany asked me,

"Are you ready to get on the boat with me?  I think there are turbulent waters ahead, and though it won't be fun, perhaps we can look forward to putting our troubles behind us with a great future."

She said it to me as a serious question, somewhat knowing, foreshadowing, of events waiting around the corner for us.

I'm not sure what my reply was right then, though it was definitely in the affirmative.  But I suggest that at the end of the our story, just like these Jaredites, we will be more than just joyous that we made it to land, we will be joyous for the 'multitude' of tender mercies given to us throughout the process - no matter what the promised land looks like.  

We are appreciative of all your care and concern, and most importantly, your prayers as we look forward to the day the dark clouds disperse, and the rays of light surround us again.

“Our most significant opportunities will be found in times of greatest difficulty.”
― Thomas S. Monson



Either 6:5-12

5 And it came to pass that the Lord God caused that there should be a furious wind blow upon the face of the waters, towards the promised land; and thus they were tossed upon the waves of the sea before the wind.
 6 And it came to pass that they were many times buried in the depths of the sea, because of the mountain waves which broke upon them, and also the great and terrible tempests which were caused by the fierceness of the wind.
 7 And it came to pass that when they were buried in the deep there was no water that could hurt them, their vessels being tight like unto a dish, and also they were tight like unto the ark of Noah; therefore when they were encompassed about by many waters they did cry unto the Lord, and he did bring them forth again upon the top of the waters.
 8 And it came to pass that the wind did never cease to blow towards the promised land while they were upon the waters; and thus they were driven forth before the wind.
 9 And they did sing praises unto the Lord; yea, the brother of Jared did sing praises unto the Lord, and he did thank and praise the Lord all the day long; and when the night came, they did not cease to praise the Lord.
 10 And thus they were driven forth; and no monster of the sea could break them, neither whale that could mar them; and they did have light continually, whether it was above the water or under the water.
 11 And thus they were driven forth, three hundred and forty and four days upon the water.
 12 And they did land upon the shore of the promised land. And when they had set their feet upon the shores of the promised land they bowed themselves down upon the face of the land, and did humble themselves before the Lord, and did shed tears of joy before the Lord, because of the multitude of his tender mercies over them.