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.