Wednesday, February 19, 2014

Joy of Tiffany's Continued Journey - The Real Journey Begins

The best part of any journey, is that it isn't over in a moment.  And if you are truly enjoying the journey, who wants to be done with it!  (Kind of like reading this next text... so fun, so fun.)

So the last few weeks have been a significant period in our journey. 

Last updated was the crazy, hazy day of bone marrow biopsy, CT scans and a transfusion.  And since then has been a bit of hurry up and wait situation.  We went in to get the results from the biopsy on January 29th, and before we could find out what happened with the bone marrow biopsy, we had seen her liver counts jump and concern from that ensued.  When Dr. Glenn came in and talked to us, she had suggested that only part of the bone marrow results were completed and that it would appear that it was packed full of the cancerous cells, but they needed to do the final tests on it to confirm.  In addition to that, with the high liver counts, Dr. Glenn ordered a liver biopsy and decided also that one of her lymph nodes on her neck was a little larger than normal and wanted to get it biopsied as well.  We left that day, in our own kind of a haze, knowing that things weren't necessarily looking up and not really sure where we were heading. 

February 10th came and off we went to get the biopsies.  The unfortunate thing, the two biopsies are done by two different doctors in two different parts of the hospital.  Of course, we wish it could have been done at the same time and save us time, but that is wishful thinking on our part.  We were lucky that we could get them done on the same day. 

It started with the liver biopsy early in the morning.  And for some reason, which Tiffany still can't understand, they only gave her local anesthesia and she wishes she could have got the same stuff as she had back at the bone marrow biopsy.  But fight for it we didn't and dealt with the pain she did.  Up at post surgery her blood pressure dropped significantly for a time (probably due to shock of the pain) which caused some concern and also caused us to be late to the lymph node biopsy.  Being late, the doctor had to go into another surgery which lasted 2 hours, so we waited for that before it was Tiffany's turn.  This time, they did put her out, not under, but just in a twilight phase.  The doctor was supposed to get only one lymph node, but in the middle of the surgery, decided to take out three, just to be sure they had a good sample for the biopsy.  And then, more of the hurry up and wait scenario.

So here is what happened today.
As always, each appointment starts with a blood test.  Tiffany’s hemoglobin is down significantly from where we were two weeks ago.  The last two weeks for some crazy reason she has dropped over three full units of blood – significantly more and to a point she has never dropped to before.  She has been having high fevers daily (102.8 range) for the last week or so since the biopsies, and has some coughs, lack of energy, headaches, pain in her knees etc, that has kept her mostly grounded, so the fact that she was low wasn’t a complete shock, but that it was as low as it was, was a shock.  A shock to the doctors as well.  They were already headed down the path we are going, but this symptom of drop in blood count seemed to add urgency to the next steps.

Dr. Glenn came in and talked to us after her nurses and assistants came and did some checks on her lymph nodes and gave us a run down of the biopsies.

The cancerous cells were found in both the liver and the lymph nodes.  Long story short, they are suggesting this is still LGL leukemia, but it is not acting like they would expect, and in some ways like a lymphoma.  Unfortunately, this is a rare cancer and treating this isn’t like treating breast cancer where they can say out of the tens of thousands of people who have had this, x percent have been treated this way or that way and they have responded this way or that.  There are no statistics, and therefore no one way to treat it.  Fortunately, Dr. Glenn is a specialist in rare cancers and though she doesn’t know how to treat this exact cancer based on prior cases, she has had some success based on the many different rare cancers she has seen.  Essentially, we could look around for a better doctor, but all roads would lead back to her.  And that gives us some confidence.

So, what…

Well, we are going into what we thought we would have to do 3 years ago.  For the past three years the cancer was there, it just wasn’t showing its ugly head.  Because of that, the doctors are often concerned about treating a healthy person with different treatments because the treatments can be awful.  Hence the wait and watch approach.  Things have been progressing with the cancer, hence the reason we started with the low dose chemotherapy last year.  Again, long story short, it wasn’t nearly good enough, and when she got off it, the cancer came storming back, and evidence started to show up in December with the high fevers, lowering blood counts, headaches, night sweats, etc.  

So after the biopsies confirmed what was happening in the various organs and systems, Dr. Glenn and company have decided that we need to go into a heavy treatment.  Today she gets a transfusion to get her blood counts back up.  Tomorrow, she begins a heavy dose of intravenous chemotherapy treatment.  That is the simplified version: I will update what exactly she is doing once I understand it better.  
She will be doing the treatment three days straight doing in an outpatient clinic, and then will be off of it for 2-3 weeks (normally this drug is done every three weeks, Dr. Glenn may make it a two week regimen).  At which point we start again.  They expect this to go on for the next four months.  She will be tired, she will lose her hair, and of course other fun side effects from chemotherapy treatment, but the hope is it will kill the cancerous cells and then allow the good cells to grow in its place. 
Once we get rid of the cancerous cells, the only way to stop this from being a cantankerous chronic cancer, is to do a bone marrow transplant.  More to come on that later.  But if everything lines up just right (treatment, donors, doctors, insurance, etc) we will be move into a bone marrow transplant phase after the chemotherapy phase, with the end result after 7-8 months from now, Tiffany will be back to enjoying her life pretty normally again.  Maybe not exactly normal, and the time frame may change, but hopefully living a full life with a lot of hope for a bright future and to continue this joyous journey of life. 

We don't expect this to be easy. 

After the last few months though, Tiffany has got to a point that she has said she can’t wait to start something, because she can’t live like this anymore.  She has said this a lot this last week.  So in many ways this is a good thing. 
We have hope.  
We have faith.
We know that things will work out for our good. 
But if not, we are at peace that this is the path we are to be on, and no matter how hard or difficult the future ahead may be, knowing that our Father in Heaven is in charge will continue to give us that peace for many, many days, weeks, and years to come.   


PS – I am sure I have left some crucial things out.  As time goes by I will update you and let you know what is going on.

1 comment:

  1. Thank you for the update. We are praying for you all and have let our kids know and we will be having a special fast for Tiffany. Please, please, don't hesitate to let us know if there is a need we might be able to help with. We are not that far from you so we can come pick up laundry and get it all washed and bring it back to you, help with the kids, meals, cleaning, whatever. We stand ready and willing to do whatever we can to help. We will be praying for all of you. Please let Tiffany know how much we love you both and your sweet family.