The Magic of Christmas (Seven ½ months post transplant)

This time last weekend, Paul had taken his last two vacation days of the year (the rest having been spent taking care of me in the hospital or taking me to doctor appointments or ER trips) to take me to the country with the hopes that the miracle healing that God often does in the quiet places of His world would find it’s way into my heart and mind.  While I always enjoy being up there, it didn’t seem to be working.

The meds the psych doctor had prescribed had left me worse than I was to begin with.  (They all react differently on different people.  Not so well on me.)  I was sick to my stomach, crying, tired, mopey, seemingly more depressed than before the pill.  By Sunday we decided to stop the pill.  The nausea resided after a while, and we decided to pack up and go home a day early.  The country therapy didn’t seem to be working.  I know it made Paul sad, and it made me sad too.  He tries so hard to make life good for me.

So Monday we decided to finish all the Christmas errands since I had doctor appointments the rest of the week.  We spent the whole day together in and out of stores, talking, and just being together.  We realized half way through the day that I wasn’t the same sad little girl that he’d been living with the past few months.  I felt almost back to normal.  It was like the fog had lifted.   My mind felt clearer than it had in months.  We had no idea what to attribute it to.  Four days with my sweetheart?  Had the Zoloft helped behind the scenes while I was enduring the horrible side effects?  Will I be this way tomorrow when Paul goes back to work?

Well, today is Saturday and I can enthusiastically say that I have made it all week.  I still have to talk myself through certain things and tell myself what we’re going to do today!   But the progress has been remarkable.  And it helped hearing from the oncology psych doctor that the timing of my depression was completely normal compared to other transplant patients.  Doesn’t make it any easier.  But it does make me feel less alone and weird.  The encouragement continues to stand…you must let the healing continue.  Once you get to your one year anniversary, things will start to turn around.

Maybe Santa came early.  But I believe something a little deeper.  I know the prayers that have been prayed for me.  And in this Christmas season as we prepare to honor the coming of a little baby who was not just any baby but God’s only Son, sent to live among us until His time was come to sacrifice Himself so that we might have a way back to God.  A free gift that all we have to do is receive.  Jesus is the Magic of Christmas, and he touched me with a little of it this week.

May God touch you and your family this year with the Magic of Christmas.

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.”

Day 117. A Little Birthday Bliss for the Caregiver…

…on the heals of a stressful week.  But I’ll talk about that in a bit. 

For the first time since early April, April 8 to be specific because it was Easter Sunday, we traveled back to Oletha for Paul’s 53^rd birthday to spend a couple days in the place that is probably closest to his heart.  He could have gone up during the summer without me, but he didn’t.  Once I was released to go home, they said I was also released to go to the country…as long as we had a plan in case of emergency.  Paul always has a plan.

He had bought a new tarp to cover the porch and a new battery for the 4-wheeler.  Some birthday presents!  He also used his gift cards from father’s day to replace the fishing poles and reels that had been stolen from our garage.  So armed with our new gear we 4-wheeled to the tank ready to greet the fish that have not been visited all summer.

Paul usually out fishes me every time.  But for whatever reason, probably just luck or maybe it was the new rod, I stopped counting after a dozen and caught all three types of fish that we know live in our tank…bass, crappie, and brim.  There are probably catfish as well, but I wasn’t using that type of bait.  I finally put my pole down and took up my camera.  :)

We relaxed, 4-wheeled around the property, hiked a little down the creek (as much as I could), enjoyed the breeze on the porch, enjoyed the company of our best friends, enjoyed food simply cooked, drank plenty of water, and took my nap.  Simple pleasures.  And I still did what I’m supposed to do.  It was good to get away.

The previous week had been a bit rough.  Headaches and tummy aches had been on the increase.  Plus we had some discouraging news at the doctor’s office on Wednesday.  The final results from the last bone marrow biopsy had finally come in and while the donor cells were 100% in one type of cell, the T-cells which had been up in the high 90% last month were down to 66% this month.  My cells were trying to take over.  Who would think?! 

To try and remedy this, the first step was to take me off the prednisone immediately.  Done.  The next step is to slowly reduce my immuno-suppressant drugs (Tacro) starting this Wednesday and either weekly or biweekly thereafter, testing weekly.  That’s a little scary because it is also what keeps my GVHD down, so I can possibly expect more issues with my stomach.  In fact, I have already had more issues just getting off the prednisone.  This will be a balancing act to see if the donor cells will ramp up and become more aggressive without the GVHD becoming too bad.  :(

The next part of the conversation took me several days to digest.  I’m glad Paul was with me or this post would never have gotten written.  He said that I had the “deer in the headlights” look.  I had planned on driving myself for the first time that day, but because of the headaches he decided to take the day off and take me.  I didn’t even know he had done that until the night before.  Like I said, he always has a plan.  It’s like God just nudges him at the right time.  God knew he needed to be there that day. 

If the medication plan doesn’t work over time, the second option is called DLI, Donor Lymphocyte Infusion.  This is where they would ask my donor to re-donate (ugh) and they would infuse me with only his lymphocytes via IV.  No chemotherapy would be needed. 

If that didn’t work or wasn’t available, then option three is chemotherapy.  I responded well to the first round.  While it wasn’t pleasant, it was effective.  And now that I am no longer 17p deleted, I do not have that playing against me.

So after everything having gone so well, it was a little discouraging to hear this news.  But the medication option may work just fine.  It will just take some time to see.  Please pray that we continue on the positive path that we have been on so far.

My main responsibilities are to drink inordinate amounts of water, get plenty of rest, and trust God.

As I looked back to my devotion on the day of my doctor visit, I saw how God once again was there encouraging me.  His timing is always perfect.

Trust Me, and don’t be afraid.  I want you to view trials as exercises designed to develop your trust muscles.  We live in the midst of spiritual battles, and fear is one of Satan’s favorite weapons.  When you start to feel afraid, affirm your trust in Me.  Refresh yourself in My Holy presence.  Sing praises to Me and My Face will shine radiantly upon you.

Isaiah 12:2  “Surely God is my salvation; I will trust and not be afraid.  The Lord, the Lord, is my strength and my song, He has become my salvation.”

Day 106. Learning to Live in the Quiet

My first days at home alone scream the reality of my new normal.  Quiet.  Restful.  This is what is necessary and prescribed as I continue the healing process.  It’s just so different from my old normal.

My Bible devotional on Day 100 was especially appropriate.  I’d like to share it.

Relax in My Healing.  Allow Me to transform you through this time alone with Me.  As your thoughts center more and more on Me, trust displaces fear and worry.  As your trust in Me goes up, fear and worry automatically go down.  Time spent with Me not only increase your trust; it also helps you discern what is important and what is not.

Energy and time are precious, limited entities.  Therefore, you need to use them wisely, focusing on what is truly important.  As you walk close to Me, saturating your mind with Scripture, I will show you how to spend your time and energy.

“My Word is a lamp to your feet; My presence is a light for your path.”

I haven’t yet found a daily routine that I feel good with.  I need to feel a little more productive.  But that’s just me putting that on me.  I’m committed to avoiding too much television.  I spend time in the Word.  I keep up with the laundry and the shopping.  I cook the meals and clean the kitchen.  I have a couple projects that I want to start, but I just haven’t gotten that far.  I have several piles that I need to sort.  I’m not sure what’s keeping me.  I think a lot.  I move less.

Yesterday, I had the first opportunity to have my labs drawn at the much closer MDA Woodlands location and then have a phone consultation with my doctor.  While we are still waiting for the molecular test results to come back, we did find out that I am no longer 17p deleted!  My donor’s DNA has perfect chromosomes and the test came back at 17p negative.  Perfect!  Thank you, M-47!!!

Next week, I will go back downtown to the MDA clinic to see Dr. Shah in person and drive myself for the first time.  We’ve come a long way, baby!  As she continues to remind me, we still have a long road ahead of us, but we have made good mileage so far.  :)  

Day One Hundred

In the journey of a stem cell patient, Day 100 is a milestone day.  Nothing special happened today, but it marks a time period of success. The results from my bone marrow biopsy were not in yet on Wednesday, so I do not know the updated numbers of my donors percentage of cells compared to my old ones. We were at a remarkable 97% last time, so we are hoping for even better figures this time. Hopefully, we'll hear within the next week or two.

Day 100 also marks the day that I can go home. We took mother out to dinner tonight to celebrate the milestone and to say just a small thanks for all she has done for us. I have been packing up, and Paul is working on his last project for now...the bathroom sink.  As  ready as I am to be home, I will always cherish this time with my mom. It's a rare opportunity that you get to go back to your childhood home and spend this much time with your mother at this age.

We will pack everything up in the truck tomorrow morning and head north. While I had a couple friends ready to come over and help me clean, my sweet husband surprised me, took a day off work this week, and cleaned our house from stem to stern, plus did the yard, weeded the beds, all so I could come home to a perfectly clean house. There are a lot of wonderful caregivers out there. There are a lot of wonderful husbands out there. I have the best of both. But I could write an entire book about that.

Our journey began almost a year ago. So much has happened. So much has changed. But some things have not. The love and faithfulness of our God, our family, and our friends. The prayers offered on our behalf are what have gotten us through. We still have a long road ahead of us, but we are thankful to be at this turning point.

Following His lead...

Tamara

Day 97. Joy of Joys.

My oldest grandchild, Dana, a girl, carries this as a middle name. The other two are boys, and they simply are as well.

This past weekend was a milestone for me.  I attended my first major "event". We went to my great nephew's birthday party complete with kids' water slide, swimming pool, trampoline, and play set.  A virtual play heaven!  The kids had a blast. I was able to enjoy watching all three of my grandchildren and all my great nephews and nieces play together while the adults mingled and visited. My kind of party.

I wore my sunscreen, capris instead of shorts, donned a hat, and stayed in the shade as much as possible. I am now, and forever, especially susceptible to the sun and skin cancer. Boo!  I love the sun. But you do what you're supposed to do so you can be where you'd like to be.

After the party, Bethany and Kevin had a wedding to attend so we had the opportunity to keep Dana and Ethan. They were busy but wonderful. Tons of hugs and squeals and giggles.  With them recently moved to north of Dallas, I knew this could probably be our last visit until Christmas!  :( They all spent the night, had a leisurely Sunday morning, and headed north sometime before noon.  Wonderful.

We were concerned as to whether or not I could handle that much activity in one weekend with getting sick, but I made it!  We even went and visited Steph and Derek Sunday afternoon after a much needed nap. By Monday, I was one tired girl and stayed put all day. But I didn't get sick. I'd call that a milestone.

We are now counting down the days until this weekend, Day 100, when we go home. We're ready. We are almost giddy!  Paul is putting the final touches on mother's porch and finishing the last few projects she had for him. I'm wondering who she's going to miss more?!  :)

I go back to the doctor on Wednesday to get the results of my bone marrow biopsy. Looking forward to good news.

So it sounds like there's nothing to do but "make a joyful noise unto the Lord!"

Day 92. The Simple Joy of a Shower.

Not since since sometime in April have I enjoyed a shower like I did last night's.  That's because every shower has required being wrapped in Press 'n Seal and waterproof tape to protect my CVC (Central Veinous Catheter).  Monday, Dr. Shah surprised me by ordering the removal of my CVC!  :) Hurray!  So after a 24-hour bandage, we were able to peel that off and enjoy a nice, long shower. Simple joys.

It's been the simple things that I've missed the most.  Not being able to eat raw foods. Not being able to bend down and pull a weed.  Not being able to hug my babies when I wanted. Not being able to sweep the floor.  Not being able to go to church. Needing a nap at every turn.  Having to wash my hands ALL the time. Little things that we take for granted in every day life...eating, energy, medical safety, affection, etc.  I have had to learn to monitor all of these and more. It's not a big deal. It's just a lot of little deals that add up.  However, as I transition home, some of these liberties will be expanded.  Still no gardening!

So last night's shower was a big little deal.

Day 90. Answers...of sorts.

While many questions received their definitive answer, most were given various scenarios and possibilities. We learned that the ever famous GVHD debut was only the beginning. The upcoming show might not start until between 6-36 months. Praying that it's one show that doesn't open!

I have been given the go-ahead to start moving back home, but we are going to wait until the final 100 days so Paul can finish out the projects around here at Mom's and just to be on the safe side until I get my final test results back. Speaking of Paul, please pray for him specifically as his back has gone out in a bad way. Of course, is there a good way?!  He has been in pain since Sunday. He's always in some amount of pain, but this is the "take ya down" kind. Please pray for miraculous relief.

We also learned that when we are allowed to go home, we will be allowed to go to the country, as long as we have a plan of action in case of emergency and a fresh water source. That was exciting news to both of us!  While I have to be careful not to over do it, just getting to that place of rest and relaxation would be heavenly...once it cools off a bit!

We learned more about how long I'll be on my meds. Six months for some.  A year or more for others. Longer for a few. As I transition home, I will also transition back to my home oncologist over by Willowbrook and will hopefully be able to drive myself. I will miss my wonderful conversations with Bonnie and Renee who have faithfully driven me all these weeks.  We will have to connect in other ways.

As I go home, I will need to create a modest routine to include exercise and my nap, being mindful to maintain balance. The headaches seem to behave the best when that balance is kept.

I am going to be able to see my grandchildren as long as no one is sick, has been recently immunized, and my energy level cooperates. That alone ought to make me feel better. I still have to be very careful with any children under 12 for the next two years, until my immunizations are complete. Any children who come over or who are around me must wash their hands thoroughly (to the count of the "Happy Birthday" song) and change their clothes if coming home from school. Sounds drastic, but those are the rules. I'm just thankful for the provision.

One of the scary things we learned was that I will always, as in for the rest of my life, have to watch out for the earliest signs of a cold. I will always be susceptible to pneumonia, even though my lungs checked out great. I will not be allowed to ride out a cold like most of us do. I'll have to go in. :/

I will also have to wear a medic bracelet stating that I am a bone marrow transplant recipient and must have irradiated blood products. If I were in an accident and unconscious and given regular blood, the T-cells in the new blood would mix with mine and my donors reactivating the GVHD and kill me. We don't want to do that.  So I'll be getting the bracelet!

The first words out of their mouths continue to be, "No gardening!"  The are really serious about that one, much to my chagrin.  For a year.  Ugh!  But they have let up a bit on the house cleaning. If I use products that hold the dust down (like Endust, Swiffer, etc.) and wear my mask and gloves, then I can clean in small increments. Yay!  But I'd rather work in the yard....

With regard to energy levels, it has become fairly clear that it's going to be a couple years before I will be close to my old self. And even then, my new normal probably won't be anything like my old normal.  I am learning to embrace that.

Throughout this entire journey, we have learned to take one day at a time. I may feel fine one day and not so fine the next and have no clue why. What we do know is that God has been and is here with us every day. His mercies are new every morning. Great is His faithfulness!

Day 82. Today's Questions.

While today still holds nothing except questions, later this week and next should start providing some answers. Thursday is our first Survivorship Class, an hour and a half one-on-one class for Paul and I with a nurse practitioner to go over every question imaginable about the steps of going home. Sounds like I'll be taking a lot of notes!

Friday is my re-staging day when they re-do my labs, CT, and bone marrow biopsy. Fun times! It will provide information as to what stage I'm at now. They should have some preliminary results when I go back in next Monday. I have today off.

My headaches have been better this week. Not sure whether to attribute it to the increase in Topamax or simply to your prayers. I can never really find a pattern when it comes to the headaches except for increased fatigue. They just come at will. But I am thankful for a better week.

I am thankful for so many things actually! My daughter and son-in-law were able to buy a house in record time. It's adorable. It was totally a God thing. Paul's job is going much better. Mother got through the neck brace period. I have three adorable, healthy grandchildren who I will hopefully now have a lifetime to love. I got a commission check for work I did last fall. We have had the opportunity to stay with my mom without having to rent an apartment near MDA. I have been able to have several weekend home visits. My sweet husband has used the time here to build my mother a back porch cover. It's beautiful. I have always had a driver when I needed to get to MDA. We have had numerous meals made and brought to us. I continue to get stronger each day. The list goes on. And it's all God stuff. He either provided the way or the people.

Even when things are hard, He is good indeed! When there are questions, He is the answer.

Mama O Update

Yesterday, Mother went and had the procedure done for the BPPV, Benign Paroxysmal Positional Vertigo. From what we understand, it is one of the more common types. However, most doctors do not seem to have the knowledge that world reknown Dr. Horwitz, otherwise known as Dr. Dizzy, does.

For a fee, he does a procedure that is supposed to reposition the crystals in the inner ear and eliminate the dizziness and other issues. Part of the procedure includes wearing a neck brace for three days after the initial adjustment. No looking up, down, left or right. She must keep her head elevated above her body even at night. She has already complained of its discomfort, but we remind her of short term pain for long term gain.

Please pray for her this weekend that 1) she will be a good girl, 2) she will not experience too much discomfort, 3) and most importantly that the procedure will take the first time. She goes back in three weeks for a check up. What a blessing if this weird procedure would fix the problem.

On a second note, mother wore the heart monitor for a month without having one heart palpatation. The weekend after taking it off, she had four! Her skin was so damaged from the electrodes that they were giving her time to heal before starting again. Please pray that the next time she starts that the monitor will actually capture the readings soon so that she could wear it for as short a time as possible.

Thank you for your prayers for my mom and for me. My headaches continue at different levels on different days. I have been very tired this week. Other than that, I'm ok.

We have some dear friends suffering with prostate cancer and a place on his head. Please pray for John and Dian. My buddy, Dave Kinler, finds out soon about the stage of his lymphoma. It's not looking good. He may be next in line for a stem cell transplant. So many prayers. Such a big God!

Day 77. Two Steps Forward. One Step Back.

There have been several ways that I have seen steps forward. Each day, I have seen micro amounts of increase in energy. But it's an increase! One really good nap seems to work most days now. Some days still require two, but not all. Stretching sometimes helps my headaches. Sometimes it doesn't. But it always feels good.

Monday, however, was a step back day. It started with a day long headache, manageable but constant. It ended with it moving to unmanageable and throwing up all night long. I should have gone to the EC, but I just refuse to go back to the hospital and ruin my chances of going home. So we just toughed it out. I had an early morning appointment already scheduled, so I was trying to hold out. Paul toughed it out with me. We only got a little bit of sleep. By morning, I threw up one last time and that seemed to be it. By then, I had depleted my fluids, so when my lab work came back it was evident how much I had lost. They told me that if I threw up even one more time that I'd have to go to the EC. Fortunately, I didn't.

I did, however, fall asleep at every turn! As the appointment was very early, we were taking a different route that Renee hadn't driven. I fell asleep as navigator and we missed our turn. Oops. I fell asleep sleep sitting straight up in my chair in the waiting room, and Renee sweetly put her arm around me and laid my head on her shoulder. This happened several times. I think I fell asleep mid-sentence a few times as well. I fell asleep in the truck on the way home, but she knew the way. I took a nap once I got home and slept most of the afternoon. When I woke up, Paul was already home. I spent most of the evening dozing on his shoulder followed by a good night's sleep. I guess my body was really tired and needed to catch up on that rest. Is it nap time yet?

I learned from the doctor yesterday that these headaches are going to continue as long as I am on these meds, and I am going to be on these meds for a while. The anti-fungal/bacterial/viral meds suppress my immune system so it doesn't take over the new guys. The Tacro, which causes the headaches, suppresses the GVHD and keeps the new guys from completely overtaking the old guys. They change the balance little by little depending on my numbers until they can take me off both of them. It takes a while.

So the prayer still is that we can manage the headaches in the meantime. They increased my Topamax to 250/day. We'll see if that helps. They also increased my magnesium. I think that's because I'm not on IV fluids now. Pray that I am faithful to drink enough, which is a LOT. Please pray that I keep these dance steps moving forward.

Cha-cha-cha!

Day 70. Headache, Headache. Go Away!

Just when I thought I was doing SO good, I realized it was the drugs! The week and a half that I went without a headache was during the time that I was on the higher dose of descending steroids. The day the headaches started back was the same day that I started on my 1/2 pill. Coincidence? Yeah, I don't think so. Oh, well.

Now what? My doctors are convinced that my headaches are caused, or at least highly aggravated, by my Tacro. For now I still need to be on it. I am doing so well, however, that she is debating how soon to start weening me back. I'm a little nervous about that call because that is the med that fights against GVHD. So headache or GVHD??!

I continue to be an anomaly in this whole thing. But I do not want to take anything for granted. There are still side effects that can pop up months out. Because I "look good," the doctor and others sometimes forget that I am still sick. My numbers are in line with where they should be at this stage. Actually, they are a bit ahead. But my energy level is the same as other transplant patients. I just have hair and good skin color.

I have so much to be thankful for that I haven't had! I haven't had any skin GVHD, any blood products, or any mouth sores. I was reminded by my friend and fellow transplant buddy, Paul Pavao, that I am still very young in this process and have done exceptionally well. I have much to be thankful for! The power of prayer is undoubtedly what has gotten us to this point.

I also found out this week that if I can go all month without needing fluids or blood products that they will consider scheduling the removal of my CVC! Joy of joys! No more getting wrapped up before showers. No more doingy decorations hanging from my chest and poking from my shirt. No more being careful how I sleep on it. I too will carry the "badge of honor" scar.

For now, the main prayer request is the headache. It is daily. Constant at various levels. The meds are keeping it manageable, but it is draining. Pray for wisdom for the doctors in knowing how to best manage my meds.

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God."
Phil. 4:6

4th of July Celebration. When Will I Be Able to Really Do This?

Yesterday was an absolutely wonderful day! It started by my fixing breakfast for our little crew. I was excited about getting the day started! Then Paul and I went over to Steph and Derek's for a short visit and to pick up the extra bed to tote back to her mom's. We had already scheduled to drop me back off at mom's so I could have a quick snack and a nap, which I did, in preparation for the rest of day. I thought that would be enough.

An hour and a half later, I was awake and eagerly awaiting the arrival of my brother, Ron and Julie, and my son, Josh and Ky & Caleb. We worked together in the kitchen making side items and Paul got his yummy burger concoction stirred up. Nothing stressful.


Everyone arrived. Toy cars and trucks were retrieved from Mama O's toy closet for the third generation of children to play with. The new porch cover was already being enjoyed and utilized. Conversation bounced around like the balls on a pool table. It was music to my ears. Even on this smaller scale. Once lunch was served, Caleb ate almost two ears of corn! What is it with kids and corn on the cob?! :)

After Julie's 4th of July cheesecake (yum!), it was time for the girls to indulge in a game of cards...Hand & Foot, while Caleb ate watermelon and the more senior guys wandered back for naps. It was about at the beginning of the game that I realized how tired I was.

It doesn't matter that I hadn't actually done much other than conversing and piddling around the kitchen. My energy level is the first to go. People often get confused because I don't look too bad anymore, and I am not really one to let on when I am going down hill in the moment either.

Caleb was very good, but he was a 2.6 year old boy in his 80 year old Mama O's house with lots of things to touch. He especially likes the grandfather clock and the lamps. Your senses tend to be on a higher alert in such a situation, which I'm sure adds to energy zapping.

By the time we finished the card game, I knew that I had over done it. The headache was barreling down, trying to get the better of me. I've learned which drugs to take to try and stay "in front" of the pain. I must have already missed that window. Long story short, it ended up requiring my full arsenal to get it under control and by 2:30 am it was all gone. Slept well. PTL!

I guess my unanswerable question is this.... How long will it be before I can just have a somewhat mildly normal day of activity without it causing a headache? I guess I'll let you know when we get there.

For now, I wouldn't have traded one moment of yesterday. I hadn't seen the kids since May, except on Skype. To be able to just watch Caleb play and interact was precious.

As we celebrated the independence of this wonderful country of ours, I was personally reminded how very dependent I still am on those around me. I too am looking forward to celebrating a return to a higher level of independence while understanding the interconnectedness of all those who care for me.

Independent does not mean alone.

Day 62. Updates on Mom and Me.

Yesterday was mother's all day testing with Dr. Dizzy. Fortunately, the tests produced answers! She has a form of vertigo. This world famous doctor has an hour long procedure that can supposedly remedy the situation by rearranging the "crystals" in the inner ear and getting them to stay there. This is scheduled for Thursday, July 19. What an amazing thing! Please continue to keep her in your prayers.

I have had a good week. Up until Sunday morning, I hadn't had a headache in a week! Since then I have had two, but the pattern continues to be confirmed. If I don't get two naps per day, if I over do it, I get a headache. Period. For me at this time in the healing process, it all comes down to the necessary amount of rest.

Today starts my last week of ATC trips...Lord willing. Next Monday, I will start going to labs then to Dr. Shah's clinic. No more 3-hour IV's and free lunch. This, of course, puts a greater level of responsibility on me and my own personal care, which is all part of the process of getting to transition home. Mother, and sometimes Paul, are concerned that I will try to over do it when I get the opportunity to be on my own. What everyone needs to realize is that as much as you want me to get well, I want to get well every bit as much! I never want another round of nausea or another headache as long as I live. Pretty sure I'll have to endure a few more, but they won't be because of my making! Just sayin'.

While I wouldn't recommend this plan to everyone, I have learned a great deal of patience during this period. I have learned how many things can just be let go. I have learned to be the student again. I have learned that there are many things not worth saying. I have learned to be quiet. I have become a better listener. And I have rested. More so than I ever would have on my own.

Please pray as we enter what we hope is our last month away from home for continued strength and that the meds would continue on their current positive course. Pray for mom as she gives of herself to us and as she awaits her procedure. Pray for Paul as he continues to juggle two houses, his job, me, a porch project, and everything else.

Praise God from whom all blessings flow!

Make a Joyful Noise

For those of you who were in the CBC youth groups during the years between 1981-1999, I had a dream last night that included many of you. So many faces. It involved one of my favorite aspects of youth group (besides Tremendous Tuesdays) and that was music!

Getting fifty, eighty, one hundred teenagers to lift their voices in praise could be a daunting task, but when accomplished, by the grace, mercy, and power of the God, it was a most amazing thing. More amazing than the adults. It was something that lifted my spirit to another level.

I was allowed to visit there again last night, not back in the day but back with your children. Many of you have been posting pictures of camp pictures, VBS pictures, and other summer Christian kid activities your children are enjoying that you enjoyed as well. What a blessing to see you pass these things on to the next generation.

My heart sings with joy and is lifted in the same way it was lifted so many years ago. Thank you for blessing your children. Thank you for blessing those of us who had small parts in watching you grow.

Day 56. Latest Updates.

Yesterday was my ATC day and I received quite a bit of information. So I wanted to share a variety of prayer requests and updates.

First of all, my Tacro labs came back very low (2.8) so they had to increase my Tacro meds (the ones that work on my GVHD) from 3-am/4-pm to 5-am/5-pm. An increase of another three pills per day will increase the possibility of headaches. Ugh! However, I did confirm that the increase in my Topamax does allow for three Oxycodone AND Dillaudid for a total of six pain pills per week if needed. However, there have been times when I have needed that many in two days...but not in the last two weeks. So the short of it is, please pray that my Tacro numbers stay between 7-10 and that my headaches would be minimal.

I also learned that they want me to stay at mom's for at least another month, based on if I don't have any more hospital visits, longer if so. Tomorrow will mark two weeks since I've actually been in the hospital, but the incident Sunday a week ago, Father's Day, counted as an "incident" because my bags were packed and they were ready to take me.... So Sunday will count as my true two week mark. Things have gone very well at my mom's. She has been most gracious. And I know that in the years ahead, we will look back at these weeks with very tender memories.

They are also looking to wean me from the ATC. I was going to ask, but didn't want to seem pushy since it's only been a few weeks. But Dr. Shah brought it up since I have been doing some better the past couple weeks. If I do not have any more incidents over the next two weeks, I will continue in the ATC through Friday, July 6, and start weekly labs and seeing Dr. Shah in her clinic once a week on Monday, July 9. I will continue that throughout July, and then we are scheduled for our first Survivorship Class on July 26, followed by another round of tests (labs, CT Scan, Bone Marrow Biopsy) on July 27. After that, we should better know where we stand and what is next in our process.

In the weaning process, I will be taking in one fewer fluid pack each day, so the responsibility of fluid intake will weigh heavier on me to make sure I keep my kidneys and liver flushed with all the meds I'm on. I can't imagine drinking any more than I do now, but please pray that I stay properly hydrated. I should be able to tell by my output.

I also learned that it will be early October by the time I would be eligible to be considered for vaccinations. We talked about the things that I am still not going to be able to do for quite a long while. It's hard because so many are such a part of me. But I continually have to remind myself to look at the big picture. God has given me a new lease on life. The little things, and even some of the bigger ones, will just have to wait. I do believe I have written extensively about waiting on the Lord. And so we continue. His goodness continues. His mercies are new everyday. Great is His faithfulness. How can I give any less?

Day 53. Paul’s New Prayer/Goal. Mine, too.

Sometimes they’re as obvious as the noses on our faces.  Other times, they seem to take some thought.  Either way, Paul is usually the one to know what the goal needs to be.  Right now, the goal is to go one month without being admitted into the hospital!  I can’t say to go one month without “going” to the hospital because I “go” every Tuesday and Friday to the ATC (Ambulatory Treatment Center, for those who have forgotten the term).  I almost blew it last Sunday, but I was determined (as you may have read in a previous post) NOT to go back just three days out from my last release.   That was a close call.

In addition to that goal is one that has hit me squarely upside the head this past week.  That is how very weak I am.  While the med balance is fair to middling and on the improving side, I am skinny as a rail and losing muscle mass.  My energy level is 0 to 1.  I try to “do” and I end up with a headache.  And with the increase of my Topamax, I am now limited on my pain meds to three per week, so I don’t have the luxury of a headache!  So I have to do a little at a time, take a nap, do a little more, take a nap….  For those who have known me more than five minutes, you know this is very difficult for me.  If the fatigue of last fall was difficult, this is impossible!  Of course, nothing is impossible with God.  But it would be without Him! 

So Paul’s prayer (and mine, of course) is to keep me out of the hospital for a month, then we will re-goal.  My prayer is for the patience to endure the slow process of rebuilding strength.  Oh, wait.  I know what happens when we pray for patience!!!  Let’s change that to praying for small daily successes in rebuilding strength…with patience along the way.  :)

Now maybe I can go back to sleep.  

Have I Mentioned.....?

For the past four days, I have called Bethany and asked, "Have I mentioned that the tests results came back that I have level 1 of 4 of intestinal GVHD?". She very patiently answers, yes...each time. And then with a smile in her voice tells me that when I ask the next day, her answer will be the same.

I'm not sure if this memory thing will be permanent or not, but I am thankful for loving and patient family and friends who have fun with me without making fun of me.

Have I mentioned....?

Days 44-48. It Got Scary, But I'm NOT Going Back...today!

We got back home to mom's Thursday evening to a lovely dinner from my HS friend Mary Meadors Payne. Friday, Day 44, Bonnie took me back for me ATC follow up. It was amazing to see how quickly my BP had come back down to normal, 120/69. Saturday, Day 45, mother and I took an outing to Lowe's to look at paint chips for the porch cover Paul is building for her then to Kroger's for just a few items. By the time we were back, I was exhausted and it was time for the Walgreens Infusion Home-health lady to come and teach me how to set up my home fluids. After that, I ate lunch and took a much needed nap.

By that evening, I had the headache that wouldn't quit. It required three different types of meds to finally bring relief, over a 6-8 hour stretch. By morning of Day 46, Father's Day, it was better but I was very tired. We enjoyed koloches on the "porch," then drove Mama-O to Bridget's to celebrate Father's Day and my brother's 58th birthday (you heard it here) and to get some hugs and waves, came back and napped until 12:30, awaiting the kids to arrive to celebrate Paul's Father's Day. Was ok for the afternoon.

Napped again as soon as they headed their various ways. Paul woke me up to remind me that we still needed to run out to the house to pick up a few things. So we headed out. Before we ever arrived, the nausea began, with roadside stops along the way. I don't really remember what all we got at the house. He took care of that. I napped and/or stayed in the bathroom. When we left, I brought a bucket with me...much needed. By the time we got home, Paul was on the phone with the doctor, throwing my stuff back in the truck, telling her that he's bring me back in, and me hollering in the background that I'm not going back! I won! It was a long night, but I just could not go back. I was finally able to keep down the meds they would have given me there and practiced slow deep breathing until I could get it under control.

The payoff was that Paul would have to get me to the ATC Monday morning, Day 47. No problem! More questions, more ideas. But I did get a much needed 3 hour nap!

Today, Day 48, Renee drove me to my Neurology follow-up appointment. The long and short is yes, I can touch my nose, my peripheral is fine, I can walk toe to heel, and they are going to now again double my Topamax to 200mg per day. That's a lot! Just an FYI. I still have my 25's so I can take 75 or 100 when they bring my doses back down. I am not allowed on this level of Topamax to take Dilaudid or Oxycodone more than 3 times per week so PLEASE pray that the Topamax keeps my headaches at bay. And Maxalt is still on a let's see basis.

The nausea...I think I'm just supposed to breathe, or was that.......

Day 43. Lots of Questions. All the Same Answer.

Yesterday brought very good news! But with it brought a ton of questions.

Can I be around children now?
Can I go to family gatherings now?
Can I go to a restaurant?
Can I go to church?
Can I go shopping?
Can I clean my house?
Can I even go home?
Can I work in my yard?
Why do I still feel bad?
Why am I still so tired?

The answer to all of these questions and more come down to the simple fact that I am still just over a month old! I have no immune system, no natural immunities, no immunizations, and I will not qualify to be re-immunized for quite some time. So the simple, deadly, forgotten things like measles, mumps, rubella, and all the other diseases immunized during infancy, I am susceptible to. Currently, I have the sniffles. Most of you probably do too. But this is not a good thing for me.

When will I be able to do more? Good question! We don't know. We ask permission about specific things. I went to the store once or twice with Paul (when I was doing better), donning my mask and either wearing gloves OR washing my hands immediately before and after touching anything. I didn't last very long. But it was nice to get out! Though I looked like a crazy germaphobe!

Before Bethany & Co. move to Frisco, you can guarantee that I will be asking permission for some sort of visit. Mask, gloves, and gown if necessary. But if it's been a certain time frame since Ethan's immunizations, the answer will be no. I cannot begin to say how hard this is!

But Paul is in this for the long haul. He makes the tough calls when I can't. Even when he knows how much it hurts me. We have to stay focused on the big picture. There's going to come a day when a white Ford truck is going to fly up I-45 and find the new Hopson home for the first time. Until then, thank God for Skype!

The last question of the day was whether or not I was going to get to go home to mom's. The team just came in with the partial results of yesterday's upper/lower GI scopes. Initial results look good. Final biopsies next week. So....hi-ho, hi-ho, it's off to mom's we go..... :)

Maybe she can put some weight back on this 113 lb frame.

Day 42. REMISSION!!

I guess I could have chosen a title that would have kept you guessing a bit further into the post, but I just couldn't. My team came in a while ago to review my current situation regarding the ongoing headaches and nausea and to let me know that my MRI came back completely normal. (I'm thinking of having that one notarized!).

They have had me on no food or drink since midnight (it is now 1:30pm...), and I have an endoscopy scheduled at 3pm. They did approve for me to take my meds with the tiniest sip of water. I have ended up napping more today. If I can't eat, sleeping helps me not think about it. This test will hopefully rule out GVHD as the last possible culprit, leaving drug balancing as our final act.

Just as they were about to leave, I remembered to ask for the results of my bone marrow biopsy and DNA analysis. Because the focus has been on the problems at hand, the big picture news got swept under the table. The rounds doctor quickly gave the good news and went on her way, then sweet "too tall" printed the results and fully explained them to me. The DNA results indicate that M-47 "comprises approximately 98% of the total DNA". This is remarkable, incredible, miraculous, and totally God! The bone marrow biopsy shows that "there is no diagnostic morphologic evidence of lymphoma" (or leukemia). I am officially in remission! Praise God from whom all blessings flow!

There is still a road to walk. The reason I have been in the hospital is still before us. GVHD is a creature that can still attack in months to come. But God is faithful. He has brought us this far. He will continue to carry us through. We have shed tears of fear, tears of pain, tears of the unknown. Today, we shed tears of joy as we give thanks for this amazing answer to countless prayers.

Psalm 100
"Shout for joy to the Lord, all the earth. Worship the Lord with gladness; come before Him with joyful songs. Know that the Lord is God. It is He who made us, and we are His; we are His people, the sheep of His pasture. Enter His gates with thanksgiving and His courts with praise; give thanks to Him and praise His name. For the Lord is good and His love endures forever; His faithfulness continues through all generations".

Amen.

Days 38-41. Still Pooping after All These Days

While this is not the primary issue, it does seem to make the top three questions of the day. How's your poop? How much is there? What is the consistency, frequency, and general make-up? Where does your tummy hurt? How do these coordinate with your headaches? Which came first, the nausea or the headache? Which is worse, the headache or the nausea? Is the nausea always productive or does it just make you feel queasy, or better yet, does it just make you feel like poop?! :) How often do you throw up? The list goes on.... How I long to just have a normal conversation that has nothing to do with my own personal poop quantities or feelings. We can talk about your baby's poop. That is perfectly acceptable!

For those who have been praying and asking about my numbers, they look good. My "numbers" officially consist of my WBC (white blood count), HGB (hemoglobin, to see if I need a unit of red blood), and PLT (platelet count, to see if I need platelets for clotting). Mine are great. I could probably donate platelets!

Yesterday, Day 40, I had two consults with my regular stem cell team plus the neurology doctor. The stem cell team was considering sending me home, but nothing has changed; I'm really no better, just medicated. So Paul and I had already decided to decline that offer, as attractive as it might sound. We prefer answers and a plan. After discussing further, they agreed. Especially the others on the team, like brown eyes and too tall.

They have gotten with Neurology and scheduled an MRI for today, Day 41, to rule out anything that direction. It is highly probable that they will also partner with the endoscopy team and schedule a scope to rule out GVHD. That will leave us with what it probably is...the vicious post transplant meds that could be the culprit of these headaches and nausea. However, we need to find a better way of managing the pain without relying solely on opioids, which continue to require more drug to do the job, and can create physical dependence then lead to a difficult withdrawal process. I have heard from several friends that it can take months to finally happen upon the mix of meds that works best for your mix of mess. So patience is key.

It looks like I will probably be here at least until tomorrow after the scope. If so, I would imagine they would schedule me for ATC on Thursday and Friday and hope to get back to the twice a week, Tuesday/Friday ATC trips by next week. Now this is me talking. I don't get to make the schedules. A girl can only dream...... My dream is to get back home to my hubby and start moving forward little by little.

For now, my numbers are good.  My potassium is good.  My Tacro is good. Our God is good!  Everything is going to be fine...in His time.  Thank you for walking this walk with us!

Anything less would just be poopy! :)