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.




  1. Thank you so much for keeping us posted. Tiffany will continue to be in our prayers at all times, and each of you as you deal with this emotionally and physically. Tiffany - (and Nathan and kids) - we love you so much. We are grateful that we are family and we are grateful for your love and example to us. Hugs from Missouri!

  2. That is so nice to have some answers & a plan of action!! We will continue to pray for your sweet family & hope all continues to go well!!!
    Good Luck in you journey & once again....thanks for the updates!