Day 211. The Silent Symptom

It’s been a while since I’ve written for a couple of reasons.  One is that nothing much has changed physically.  My T cells are still low and my donor vs. my cell percentage are still at 60/40 in one area.  My doctor continues to reduce my Tacro, immunosuppressant, with the hope that it will encourage the donor cells to ramp up.  I have only have some very mild GVHD skin symptoms.  All in all, no change.

The real reason I haven't written is that I have developed a new symptom that no one likes to talk about.  Depression.  I didn’t believe it at first.  Then I tried to self talk myself out of it, pretend it wasn’t happening.  I have always been an upbeat, outgoing, independent, get a grip kind of gal.  I don’t get depressed!  And I don’t know what to do with myself now that I am.

I share this now because the purpose of this blog is not just for prayer support but to inform and prepare those who walk this road after me.  Just as I read and learned from others before me.  I have already heard from so many who have benefitted from our story.  It is important to tell this part too.

Chronic fatigue can cause depression.  The sheer length of recuperation downtime can cause depression.  The feeling of dependency, of not contributing, of feeling like you don't have a purpose can all lead to depression.  My doctor told me last week that over 50% of her transplant patients are on some sort of anti-depressant.  First you’re given a fatal diagnosis, then you spend months going through the rigors of transplant, then you spend months in quiet healing.  There is a lot of alone time with no productivity.  I am continually reminded that my job is to heal.

The fatigue leaves you too tired to do much.  There was a stretch when the fatigue was improving and my few chores were being accomplished easier.  I manage to do the laundry, grocery shopping, and the cooking.  (This came with time.)  But now the depression makes me have to talk myself through each step.  Depression makes you tired and not feel like doing the things that you know would make you feel better.  It’s a vicious cycle.  All you want to do is sleep, but sleep no longer comes.

So I try to focus on thankfulness.  I am thankful that God decided to save me.  I don’t know why he chose to let me live, but I am grateful that He did!  I am thankful for my donor.  I am thankful for my husband/caregiver.  He has been my strong, loving supporter through it all.  I am thankful for my doctor/medical team.  I am thankful for my mom and how she has cared for me throughout this year.  I am thankful for my cousins, aunts, friends who have taken me to my appointments.  I am thankful for the countless family and friends who have prayed and sent notes and cards of encouragement.  I am thankful for wonderful children and grandchildren who I love and adore and want to spend years of quality time with.  I am thankful for our place in the country where we can go and relax and do the things that bring so much pleasure.  

I have to believe that this is just another bump in the road.  Right now it feels huge and overwhelming.  I can’t see around it.  All I can do is believe that there will be a tomorrow when it will be better.  We’ve come this far.  We’ll make it through this as well.

6 Months. Looking Good.

This week was spent at MD Anderson undergoing my re-staging tests…bone marrow biopsy, CT Scan…all my favorites.  Yesterday, mom and I met with Dr. Shah for some preliminary test results.  The rest won’t be back until my next appointment in two weeks.

The good news is that my bone marrow biopsy shows no residual evidence of any leukemia!  We’re still waiting to see how my percentages of cells compared to my donors stack up.  And my white blood count is still low, but that is normal for someone who is in my shoes.  The good thing is that my neutrophils are normal so I don’t have to get neopogen shots.  Just the other aspects of the WBC are low.  My lungs are good.  My scans are normal. 

Plus, for whatever reason, probably someone’s prayer, my hair has stopped falling out like it was, and I can see little baby hair coming back in.  It’s still thin, but it looks better.  Thank you to whoever prayed.

The extra fluids that I have been getting from my twice weekly IV’s plus the water I’ve been drinking along with the reduction of Tacro have all worked together to reduce my headaches.  We have perhaps found a connection with hydration and the headaches.  Or maybe it was just the Tacro.  Either way, they’re better.  We are, however, going to start reducing the IV’s to once a week for now with the goal of cutting them out entirely, so we shall soon see.

The intestinal issues have improved drastically.  Again, everything seems better with the reduction of Tacro.  And they have taken me down one more this week.  So far so good with no uprising of GVHD. 

There is still much to do.  I still have to start getting my immunizations.  They have been waiting until I have enough T-cells.  I still get fatigued, but I am able to do more than I was.  I still need my body to grow and develop just like a baby grows and develops.  My cells are just six months old and still trying to figure things out.  I am finally gaining a little weight, so that tells me that my body does not have to work quite as hard as it was.

This has been a long six months.  But God has been faithful.  My family and friends have been faithful as well.  Thank you for your prayers and thoughts. 

Philippians 1:3-7

“I thank my God in all my remembrance of you, always in every prayer of mine for you all making my prayer with joy, because of your partnership in the gospel from the first day until now.  And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ.  It is right for me to feel this way about you all, because I hold you in my heart, for you are all partakers with me of grace…”