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…”

Day 173. Second Chances.

Some days are so stressful that the opportunity to get away is a gift that cannot be refused.  We recently had one of those days.  And we are thankful that we have a little piece of heaven to escape to. 

While there we did quite a bit of fishing.  This trip was Paul’s turn to catch.  He’d throw a line in and it would come back with a fish almost every time.  I did not have such luck or talent.  Saturday, he caught a fish that broke his line and got away with his lure, line and all.  Sunday morning, just when I was about to call it a day, I caught a fish.  But not just any fish…the very same fish that Paul had caught the day before, with the lure still in its jaw.  So Paul got both lures out of its mouth and freed him.  That first lure would have eventually killed him, but because he was willing to open up one more time, he found life. 

Most all of us are given second chances at some point in our lives.  Whether as a sinner saved by grace, our health, our finances, our relationships, or as a fish with a lure stuck in its jaw.  Our God is a God of second chances.   He is merciful and gracious and loving and patient.  And He always has a plan. 

The morning of our unexpectedly stressful day, my devotional said,

“Go gently through this day, keeping your eyes on Me.  I will open the way before you as you take steps of trust along your path.  Sometimes the way appears to be blocked.  If you focus on the obstacle or search for a way around it, you will probably go off course.  Instead, focus on Me, the Shepherd who is leading you on this life journey.

When the road looks rocky, you can trust Me to get you through.  My Presence enables you to face each day with confidence.”

I then read the passage about the Good Shepherd in John 10:14-15,

“I am the good shepherd; I know my sheep and my sheep know me— just as the Father knows me and I know the Father—and I lay down my life for the sheep.”

Isaiah 26:7  “The path of the righteous is level; you, the Upright One, make the way of the righteous smooth.”

Proverbs 24:16  “for though the righteous fall seven times, they rise again, but the wicked stumble when calamity strikes.”

Job 33:29 “God does all these things to a person—twice, even three times—“

Thank God for second chances.  And for fish.

Day 166. Blessings and Prayers

At just over five months post transplant and counting, there are many blessings to be thankful for and many prayers still on the table, for me and for others.  Paul Pavao, who was an immense blessing to me via his blog and email communication to me as he was a few months ahead of me in this journey, continues to struggle along and needs your continued prayers.  Dave Kinler, my business buddy, is currently in another round of strong chemotherapy which will hopefully prepare his body for his upcoming stem cell journey.  Pray that he does not fall prey to neutropenic fever again with this treatment. Finally, an old friend from CBC, Jim McEver, is losing the battle with stage four colon cancer and the insurance company isn’t wanting to pay for a last ditch effort trial treatment.  Pray for these and their families.

I went back to the doctor last week for my check up only to find out that the results we have been waiting for were unable to be attained.  My lymphocytes are so low right now, which is where the T-cells are, that they can’t get enough T-cells to count and compare against donor vs. mine.  My other cells are 100% donor, which is great!  We just can’t confirm whether or not the change in medicine is doing its job with the 66% donor cells vs. 34% my cells that were trying to take charge.  So we have to wait until October 29 when they do my next re-staging.  That’s when they will again do my labs, CT Scan, and bone marrow biopsy.  They can re-do the T-cell tests with this information as well…even better.  More waiting.

My hair has been falling out.  They have done a thyroid test and a hormone panel with results showing that I am post-menopausal.  Duh.  She’s going to speak to an endocrinologist to see if I need a little hormone help.  Maybe it’ll help my hair stop falling out.  Other than that, I don’t feel hormonal.  But maybe you should ask Paul.  :)

The little blessings I referred to earlier is that I have been able to go to a few outings.  However, when I do, that’s it for the weekend!  :/  My son turned 30 recently, and after a really bad weekend the one before, I was able to go and spend FOUR hours sitting and enjoying my son’s birthday party.  I slept most of the next two days, but I didn’t care.  It was worth it!  This past weekend was my uncle’s 80^th birthday.  We again were able to spend three hours sitting and visiting at his birthday party.  Around people and out of the house.  Two things that don’t happen very often.  Double blessing.  But the next day requires extra rest.  I have just come to accept that’s the way it is.  I don’t always want to take a nap.  I have to take nap.  We were also able to attend a memorial service for an old friend.  Not something you like to need to go to, but it was a blessing to be able to and to see folks you haven’t seen in a while.  The fatigue is still there but it is either less or I am used to it’s level and what I can do.  I’m definitely better than when I got home!

Psalm 40:1-3  “I waited patiently for the Lord; he inclined to me and heard my cry.  He drew me up from the pit of destruction, out of the miry bog, and set my feet upon a rock, making my steps secure.  He put a new song in my mouth, a song of praise to our God.  Many will see and fear, and put their trust in the Lord.”

Day 152. Just When You Thought….

Just when I thought that I was getting a little better, BANG!  Saturday morning at 7AM on the dot, I woke with the worst migraine I’ve had in weeks.  We threw everything we had at it to no avail.  Nothing worked.  Saturday was horrible, and Sunday was a pretty good repeat except that we had layered so much pain meds on top of me that the multiplicity finally bullied the migraine into submission for periods of time.  Monday, I felt like I had been run over by a truck, but Paul had already spoken to Dr. Shah on Sunday who worked me into an appointment on midday Monday.  She was as confused as we were. 

She considered sending me back to the neurologist, but Monday wasn’t her clinic day.  She was actually glad because Dr. Shah didn’t want her to put me back to steroids when she just got me off of them.  So the consensus is back to the lack of fluids, so they went ahead and gave me a couple hours IV right then and put me on schedule for Tuesday and Fridays now and I have to be more and more determined about my drinking.  Paul is now numbering my bottles and putting them in the refrigerator (rather than refilling bottles or cups and not knowing for sure how much I’m getting).  Since they had already checked my thyroid, they’re going to do a hormone panel on my next set of labs because hormones can have an effect on migraines and hair loss as well.  It would be nice if we could pin an answer on something other than hydration.

She took my Tacrolimus down another two pills per day.  She is convinced that as we eliminate the Tacro, we will minimize the headaches while working toward the chymerism situation.  I’m all for that.  And so far, I have not seen any new GVHD symptoms.  That continues to be the prayer request. 

The weekend was a horrible blur except for the caregiver in shining armor who continues to care for me in love and patience. 

I also felt the Presence of the Gentle Healer.  There were times when I didn’t think I could take it and just stopped and laid very still and spoke to Him in my mind and asked Him to help me relax and be still until the medicine could take effect.  I know I could feel His Presence.

Romans 8:6  “…the mind controlled by the Spirit is life and peace.”

1 Peter 5:7  “Cast all your anxiety on Him for He cares for you.”

Zeph 3:17  “The Lord your God is with you, he is mighty to save.  He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing.”

Day 138. Thankful for the Feast

Today is my prep day for tomorrow’s colonoscopy.  For all who have had one, the day before is much more difficult than the day of, as you sleep through the test.  Today’s diet consists of hot tea, broth, jello, water, and the prep meds with a gallon drink.  To start the day off even better, I woke up with a headache!  Joy of joys!!

In trying to have a better attitude about the whole thing, I turned to the Good Book.  The Bread of Life.  God invites us to Feast on His Word.  He doesn’t want us to be babies only taking the milk, but rather eating the meat of what He has to teach us. 

Psalm 119:103  “How sweet are your words to my taste, sweeter than honey to my mouth!”

Jeremiah 15:16  “When your words came, I ate them; they were my joy and my heart’s delight, for I bear your name, Lord God Almighty.”

Psalm 19:8-11

“The precepts of the Lord are right,

   giving joy to the heart.

The commands of the Lord are radiant,

   giving light to the eyes.

The fear of the Lord is pure,

   enduring forever.

The decrees of the Lord are firm,

   and all of them are righteous.

They are more precious than gold,

   than much pure gold;

they are sweeter than honey,

   than honey from the honeycomb.

By them your servant is warned;

   in keeping them there is great reward.

I could keep going.  There are so many references.  “You prepare a table before me
in the presence of my enemies.  You anoint my head with oil; my cup overflows.”  Psalm 23:5 

My cup does overflow!  And I am truly thankful. 

Now, back to my tea.

Day 128. The Vacation.

Paul scheduled a week of vacation time with nothing big planned other than time to relax from work and get started on the table project.  Almost two years ago, dead oak trees were cut down with a new 36” chain saw purchased for the project and then milled with an Alaskan Mill also purchased for the same.  All these tools cost less than a table of the quality wood that will be produced…and he’s making two. 

After a year or more of the wood drying, some in the barn, some in the garage, it was time to buy a planer and start planning the wood.  He could have done it all by hand, but this was too good a price and sped up the process immensely.  He didn’t splurge for the table and other accessories that he could have added.  He just did it all on the floor on the garage.  As a plus, it made great mulch!

He has now decided which boards will be the table top, which will be the pedestal, and which will be other support pieces. 

He has done all of this while wheeling me back and forth to the hospital and seeing after me here at home.  It seems that for whatever reason, the mix of the change of meds and overstimulation and getting overly tired send me over the edge.  The migraines and nausea get the better of me and the vicious cycle takes over.  It seems that I need an inordinate amount of fluids and rest to maintain my balance and certain drugs to break the cycle.

I keep wishing that this whole process would hurry up and be over; then I started thinking about how long Paul has been working and waiting to make these tables.  It’s been almost two years since he cut down the first tree.  The second came down six months later.  Then the milling began.  The whole thing has been a long process.  One of patience and waiting.  It has taken time. 

I am only four months into my process.  In four months, the first tree hadn’t even been milled yet!  Paul is much better at waiting than I am. 

Isaiah 40:31  “But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.”