Some Days, You Just Feel Weak and Afraid

Monday began as most of other recent Mondays have, labs, a bite to eat or a cup of tea depending on the time of day, then the check-in at the Stem Cell department to get my vitals then wait to see my PA, Mary and Dr. Shah.  Same thing every week.  But we don’t always get the same results.

Compared to other folks I’ve known or known of, I have done remarkably well with both of my procedures (SCT and CAR T-Cell).  My current side effects can only be classified as annoying compared to what many people have gone through.  But persistently annoying can wear on you after a while. 

So this week, Dr. Shah decided to try eliminating a couple of my drugs for a week to see if they might be the culprits.  If so, they will switch me to a different type.  I’m game.

Then Dr. Shah sat down and got that serious look again.  You would have to know her.  She is very vivacious and high energy.  She’s a great doctor for me!  :)  She might be a bit much for low-key people.  So anyway, when she gets quiet, I know something’s up. 

She had my bone marrow results.  Here’s the good news.  When I had the stem cell transplant, it obviously completely obliterated the 17p deletion issue.   This is excellent because she told me that without those results, I would be gone by now.  So thanks be to God for getting rid of the 17p deletion problem!

The not so good news is related to my 23 chromosomes.  I have 18 normal male (from my donor) and 5 abnormal female (from me).  No snickering in the peanut gallery!  The 5 abnormal do not even form any type of pattern right now and is nothing they have seen before.  Of course, it is!  And the MRD (minimal residual disease is higher in the marrow than it was in the peripheral blood.)

They are going to do another bone marrow biopsy on May 12 to compare to this one.  If the results are the same, then Dr. Shah wants to move forward with the DLI (donor lymphocyte infusion).  I’ve mentioned this before.  No chemo, just cells, probably quite a bit of GVHD.  They would contact my previous donor and see if he would be willing to donate a second time.  Please pray in advance about this.

Many of you have been so kind to tell me that I’ve been so brave, strong, such an example.  But today I feel weak and afraid.  I still know Who holds tomorrow.  I know He has a plan.  But today I am tired and am fighting feeling alone.  I want to feel like ME again!  I want to feel light and smile and feel the sun on my face. I want to run and not grow weary.  Shoot, I want to walk around the pond once and not grow weary!  I want to enjoy my husband, spend time with my grandchildren… preferably without a mask!  

“Because of the Lord’s great love we are not consumed,

for his compassions never fail.  They are new every morning; great is your

 faithfulness.  I say to myself, ‘The Lord is my portion; therefore I will wait for him.’ 

The Lord is good to those whose hope is in him, to the one who seeks him; it is good to wait quietly for the salvation of the Lord.” 

Lamentations 3:22-26

1. I know not why God’s wondrous grace
   To me He hath made known,
   Nor why, unworthy, Christ in love
   Redeemed me for His own.
   • Refrain:
     But “I know Whom I have believed,
     And am persuaded that He is able
     To keep that which I’ve committed
     Unto Him against that day.”
2. I know not how this saving faith
   To me He did impart,
   Nor how believing in His Word
   Wrought peace within my heart.
3. I know not how the Spirit moves,
   Convincing men of sin,
   Revealing Jesus through the Word,
   Creating faith in Him.
4. I know not what of good or ill
   May be reserved for me,
   Of weary ways or golden days,
   Before His face I see.
5. I know not when my Lord may come,
   At night or noonday fair,
   Nor if I walk the vale with Him,
   Or meet Him in the air.
6. Daniel W. Whittle, Pub. 1883

What if Hope DID Come in a Box?

This past weekend, my cousin Bonnie came and retrieved the beautiful HOPE Box to pass along to yet another friend who is beginning her cancer journey.  It has become evident, that even though my hair continues to fall out daily, I’m not going to be bald.  And I have made a few hat purchases of my own along the way, so I think I’ll be fine, just a little thin.

What has been true, so far, about every one who has had the HOPE Box (a box filled with wigs, little soft comfy hats, cute hats, scarves, etc.) is that they didn’t die!  It’s about to go to #6, I believe.  That’s pretty good odds!  :)

I can say with all certainty that Hope does come in a Book!  I have spent countless hours pouring over God’s promises and what He expects from me.  It seems that I have the easier of the two jobs…well sometimes.  :)   At it’s simplest, love God, put Him first; then love your neighbor as yourself…or rather deny yourself for the good of others. 

“Love the Lord your God with all your heart and with all your soul

and with all your mind and with all your strength.’ 

The second is this: 'Love your neighbor as yourself.'

There is no commandment greater than these."

Mark 12:30-31

Then why are there days that I struggle to find hope?  I know where it is!  I know what to do!  I think not getting to hear that simple word “remission” stole a thimble full of hope from me that day.  But hope is not for the taking, it’s for the giving.  And I refuse to give it up!

I saw a young woman bound across a parking lot today much like I used to.  I haven’t bounded in a while, and I’m not quite sure when I will bound again.  It made me cry.  But I had to get myself together and realize that I was out for only the second time without a mask!  Baby steps!  Be patient. 

I’m not sure how things would be for me mentally without Facebook.  While I am thankful for the simple, easy access means of communication, it has cost us the intimate face-to-face communication of old.  I have so appreciated the prayers, the ability to update, the comments and encouragements of older and newer friends from school, church and family.  For those who have never had to isolate yourself, just know if you do, take your iPad!  But for those looking for ways to minister to people who are alone, stop by for a short visit.  They’ll love it.

As soon as I am able, I am going back to MDA to be a volunteer.  I don’t have the energy now, but every time I’m there I’m given the opportunity to share with someone and encourage him or her in some way.  I do not believe that God is going to allow this disease to go to waste.  He allows us to endure certain hardships so we can be a blessing to others.

He comforts us in all our troubles so that we can comfort others.

When they are troubled, we will be able to give them the

 same comfort God has given us.

2 Corinthians 1:4

I have spoken to you with great frankness;

I take great pride in you.  I am greatly encouraged;

in all our troubles my joy knows no bounds.

2 Corinthians 7:4

And what’s that saying about stuff always coming in 3’s?!  Sometimes it just feels so overwhelming.  Two steps forward, three steps back. 

“We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed;”

2 Corinthians 4:8-9

“In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith, the salvation of your souls.”

1 Peter 1:6-9

And my God will supply every need of yours according to his

riches in glory in Christ Jesus.

Phillippians 4:19

What’s in your box?

Some News Takes a Day or So to Process…..

It was a Monday like most every Monday…packed up and ready for my day at MDA.  Though today was slated to be fairly short; just labs and a quick visit with Dr. Shah.   The labs went smoothly this week (I asked for the smaller needles up front).  No bathroom falls!  :)  I even lost a couple pounds.  (Note to self:  no need to pack on extra weight for a T-Cell trial…just a stem cell transplant!) 

When PA Mary and Dr. Shah went over my numbers, they weren’t bad at all.  Many were still a little low; some have inched into the low normal range.  Some were perfect!  This is very encouraging, especially because these were after the neupogen had worn off.  I even got permission to “carefully” see my grandchildren.

Their big concern continues to be this crazy Phantom Itch that I especially get at night.  They have consulted with others and I seem to be unique…of course.  She offered more sleeping pills which I declined, more doctor consults which I also passed on for now.  Paul and I really think that, after reading about all the meds I’m taking, I’m having a reaction to at least one of them.  I’ll survive until they get me off these meds.  If I still have it then, then we’ll see.  As far as the joint pain, it comes and goes, but it’s better than it was.  Hurray for those shots!  Then there’s the fatigue.  Whatever!  That’s what the couch is for!

Then came the drum roll.  I’ve seen this look before.  As much as I love my mother and appreciate her taking me to my appointments, I knew right then that I needed Paul. 

She handed me my Bone Marrow Diagnosis.  For those of you who tire of my techno mumbo jumbo it reads “bla bla bla, bla bla bla….”  SHE STILL HAS RESIDUAL CLL.  The good news is that it has been reduced to the VERY SMALLEST amount.  I couldn’t help but cry then, and honestly and can’t help but cry now.  We were really hoping and praying for remission.

BUT, it’s only been a month.  No one seems to be able to give a definitive answer as to how long the T-Cell fighters stay in there fighting.  If they’re still fighting, then perhaps next month’s bone marrow biopsy may have a different diagnosis.

Or perhaps this is just were God wants us.  Maybe we get just a little too comfortable when I’m in remission.  Perhaps that small percentage of CLL enhances our reliance on Him.  It shouldn’t.  But I’m pretty sure is does. 

In my devotion today, Jesus Calling, it says “At the end of your life-path is an entrance to heaven.  Only I know when you will reach that destination, but I am preparing you for it each step of the way.  The absolute certainty of your heavenly home gives you Peace and Joy, to help you along your journey.  You know that you will reach your home in My perfect timing, not one moment too soon or too late.  Let the hope of heaven encourage you, as you walk along the path of Life with Me.”

This hope we have as an anchor of the soul, 

a hope both sure and steadfast and one which enters within the veil.”

Hebrews 6:19

For Everyone Who Has Had a Bad Day…There is Hope!

One thing that is true about MD Anderson is that not all days end up as they originally were scheduled.  In fact, that happens quite frequently.  You just learn to go with the flow.  It’s best, however, to remember to put a protein bar or your favorite snack in your tote bag.  I forgot yesterday.

My original schedule was going to be quite simple.  11:30 labs.  Go get lunch.  1:30 BMB (more on that later).  2:30 Dr. Shah.  It takes about two hours for labs to be processed, so this schedule was going to allow plenty of time for the labs to get to the BMB folks and to Dr. Shah. 

Well, that would be too easy.  I got a phone call from Dr. Shah’s office while I was waiting at the lab asking me to come straight to their office once I was done.  OK… the labs won’t be ready, but it’s not my call.  The wait had been especially long because it was a Monday.  Always long on Monday.  Then since they took my PICC line out, they have to use my actual veins again.  I have really small, wiggly veins that often do not want to cooperate.  Today was one of those days.  After trying very diligently once, then trying the little hot hand packs, she wrapped my arms in hot towels and left me there to bake for a while.  Finally, just when she was about to think that the second stick wasn’t going to work either, it took.  Fifteen vials and we were good to go.  They are a patient, loving team up on the 8^th floor!

So around the corner, I check in at Stem Cell.  I get my paperwork but need to go to the bathroom before getting my vitals.  I don’t know what happened, if I was just tired or tripped up or what, but I fell in the bathroom.  No one was in there to help, so I just got myself together and got back in line for my vitals.  My mom saw that I was upset.  My BP was 140/103…yes that is high for me!  They kept asking to get me a wheelchair or take me to the ER….  I was fine.  I just hurt my bum and knocked the wind out of myself, which I don’t have a lot to spare these days.  They got me to my exam room and the PA came in who was much more calm.  However, she asked me how long I had had the runny nose, and I said since I fell in the bathroom and it made me cry!  Doctors really don’t always think of the obvious! 

Only a few of my numbers had come back yet, but they were up from last week.  Of course, I had expected them to be up because of the neupogen shot.  My interest will be next week’s counts when I haven’t had a neupogen shot.  She said that because of the number of weeks out from receiving the T-Cells, my body should start to begin to find its way back to normal.  It is difficult to compare because of the variety of cell numbers given to the variety of trial members.  So we wait.

Some of the blood taken today was to do the flow cytometry test, which is the big test that takes a long time to get the results that can detect residual levels of disease and identify disease relapse.  It also assesses my donor chimerism…percentage.  So it will be exciting to hear that news.

Dr. Shah also let me get off my Levaquin, the anti-bacterial drug.  These are all very potent drugs, so to be able to get off of them a little at a time is a good thing.

So after determining that I had indeed not injured myself, she decided on more blood work for Tuesday out at MDA The Woodlands to check for a wide variety of possible viruses and also do a workup on my thyroid to try and figure out why my fatigue is getting worse instead of better.  Hurray for The Woodlands!  They use really small needles!

That led us to our final appointment on Monday.  Bone Marrow Biopsy.  Actually, it was downgraded to Bone Marrow Aspiration.  I have NEVER only had an aspiration, so I chalked this one up to making up for falling in the bathroom.  For those who may not know the difference between the two, or may not know what it is at all… A bone marrow biopsy removes a small amount of bone and a small amount of fluid and cells from inside the bone (bone marrow).  A bone marrow aspiration removes only the marrow.  The process starts the same in that you get a deadening shot (ow!) in your backside, but I can attest now having had them both, the biopsy is much more intense!  No need to put it on your bucket list if you don’t need to.  However, my backside is still indeed sore today.  Neither is a walk in the park!!

Thankfully, mother drove back to her house where we finally ate and I took a nap before driving the rest of the way home.  No one would have wanted me on the road that afternoon!

So even on rough days, there is hope.  We wait expectantly for news from these tests.  We wait expectantly that tomorrow there will be more strength.  We wait expectantly to hear the words “remission”! 

  

In the morning, LORD, you hear my voice;

 in the morning I lay my requests before you and wait expectantly.

Psalm 5:3

For I hope in You, O LORD; You will answer, O Lord my God.

Psalm 38:15

There’s Hope in that Shot!

UPDATE:  To Creekside Church, Spring, and all my praying friends and family, thank you for your continued prayers on our behalf.  All day Monday and half of Tuesday were spent at MDA trying to figure out where we are and how to cope with the current on-going side effects.  My numbers are still "in the tank," lower than last week's actually, so I am still quite immunocompromised.  (I have been asked to explain some of my technical terms, so for this first one, it simply means that I basically have no immune system and am highly susceptible to infection.)  So they gave me another neupogen shot that will help boost my WBC (white blood count).  The neupogen usually causes long bone pain but it will just get lost in the shuffle this go around! 

Dr. Shah was very concerned about the severity of my joint pain and the resulting lack of function.  The Car T-Cell trial requests that no steroids be used.  Dr. Shah is more concerned about me than the trial, but I encouraged her to try to stay within the parameters.  She asked them if a steroid injection would qualify since it is not systemic (is not ingested into my system). They said yes.  So she sent me off to have my PICC line removed (an intravenous access central catheter that can be used for a prolonged period of time for blood products, chemo, nutrition, antibiotics….), :) and for knee x-rays to finish the day Monday.

I started Tuesday with the oncologist orthopaedist.  After a consult, he gave me the good news that the x-rays did not show any arthritis, so the inflammation is just from the T-Cell activity.  He did decide to do the steroid injections in both knees.  He hoped that I would see some relief within the next few days.  For now, I walk kind of like Tim Conway (playing the old guy) on the Carol Burnett show.  :)

I got some other good news!!!  I get to re-introduce thick skin fruits (that we purchase, wash, and eat at home) into my diet. So just before running off the road for the fourth time, (I don't think I should drive myself to any more appointments for a while), I stopped and bought banana and watermelon!  Hurray!!!!  Plus, Dr. Shah said we could take a short trip to the country, covered appropriately AND I could attend Easter Services on Sunday IF I wear my mask, sit in the back, and don't touch anyone!  Oh, Creekside, you know that I want to hug you all, but that will have to wait.  Please just see the smile in my eyes and know that I am hugging you from the inside.  

On a side note, my hair started falling out one week ago, exactly three weeks from the start of chemo.  Right on track.  It is not coming out in clumps as is typical for those who lose all their hair.  It is coming out all over in MULTIPLE strands, filling the sink like it did before.  So I will probably just end up with really thin hair like I did last time.  Not sure which I prefer. But I will be content with what I have.  I do have a lot of hair to work with, so it takes a while before other people notice.  It’ll grow back.  It’s just hair. 

As far as prayer requests, please pray that the phantom itch stays away, that the steroid shot to my knees proves beneficial, that all the other joints that couldn't get a shot will be managed by my meds, that those killer T-Cells are in there doing their job, for my counts to come up which will positively effect my stamina and endurance which are currently minimal.  Thank you all!!  Cyber hugs!

“Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us, to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen.”

Ephesians 3:20-21