April 18, 2015

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?

April 14, 2015

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

April 7, 2015

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 8th 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

April 1, 2015

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

March 25, 2015

Good News, Bad News

I went back to the doctor on Monday hoping for some answers to the latest set of side effects I was experiencing.  For several days, my joints had begun to ache to the point that I barely had the strength to get up and down.  It was the worst in my knees, then ankles and feet; but my shoulders and elbows hurt as well.  It was very discouraging.  I couldn’t imagine how it had gotten so bad so quickly.

I described the pain to the PA who seemed a bit at a loss, but as soon as Dr. Shah came in, she seemed to know just what it was. The T-Cells are busy at work seeking and destroying the cancer cells!  And in doing so, they emit a protein that causes inflammation in my body and makes me feel like crud.  So the good news is that the T-Cells are working hard.  The bad news is that it makes me feel lousy.  It should not be permanent.  Thank goodness.  In the meantime, the doctor decided to break her cardinal rule and give me NSAIDs (which she doesn’t normally do to avoid any risk against my liver and kidneys), but I am going to take 2 Ibuprofen 3x/day to help with the inflammation.  Steroids are not an option on this trial.  She is also switching one of my antihistimines to see if it will better help fight the invisible itch without bring back my undeterminable rash.  :/

As always, she was very encouraging.  I was worried that I had done something wrong…allowed myself to get weak.  She just hugged me and assured me that I had not done anything wrong.  Just listen to your body and rest when you need to rest.  We’ll get through this together, just like last time.

And just like last time, we will take this one step, one day, one prayer at a time. 

March 19, 2015

T-Cell Update – The Itchy & Scratchy Show!

I got an email yesterday from someone who follows my blog asking for an update.  I realized that I have only been updating on Facebook.  I am honored that there are so many folks out there who follow our journey and take encouragement for their own.  So let me catch you up a bit on what’s been going on….

MARCH 4, 2015

A morning of labs, followed by a lengthy, difficult time getting a PICC line put in.  Hours after expected, we ended up in Dr. Shah’s office to sign consents and proceed to admissions.  Since it was already late in the day, they actually had a room ready.  But the orders weren’t there yet, so there was more waiting.  Paul wore his #BTHOCANCER shirt in case we ran into my friend, Russell, who was also being admitted that day.  (Paul had been praying but had never actually met him.)  

We finally got to my room around 6:30-7:00pm.  Then comes the lengthy check in paper work.  By the time we were all settled in, we couldn't imagine that they were going to start my Day 1 chemo that night.  But that’s what they did.  However, Paul had already gone home by the time this decision came down…which was ok.  I was fine.  He was not fine.  He likes being there with me.  ☺  Someone, though, had ordered Zofran as the anti-nausea to go with my chemo.  It is written on my chart that Zofran causes “adverse reactions” and they ordered it anyway?!  Fortunately, I am always on top of these things and ask lots of questions and caught it before they gave it to me!  I refused to take it, told them that they could order Compozine or Ativan and we could move on.  They just looked at me.   This was not my first rodeo!  They changed the order.  Chemo didn’t start until after 11pm.  It was a long day!

MARCH 5-6, 2015

Because they didn’t give me my chemo until late the night before, all three chemo doses would have to be given late at night.  :/  They have to be given 24 hours apart.  The fortunate thing is that this is a relatively short dose compared to the 2-4 hour doses that I have had in the past.  These days, I just tried to get my walking in, went to the exercise class, visited with our old pastor friend, and gave my mom a birthday hug and card.  

MARCH 7, 2015

All I remember about Saturday is that my friend, Kay, came all the way from Nacogdoches to visit me; and our dear friends Gene & Deidra drove down to spend time with us.  I did not get to enjoy or even remember much about their visits because I was sick as a dog all day long.  Headache and nausea.  I couldn’t even keep down a sip of water.  It was a bad day!  I don’t remember anything else.

MARCH 8, 2015

The nausea finally subsided, but I felt like I’d been run over by a truck.  All I ate that day was a peach smoothie and a pineapple smoothie.

MARCH 9, 2015

CELL DAY – I posted on cell day.  The thing that stood out was that God once again sent Myra!  Sometimes God just cracks me up!!  ☺  The cells only took about 20 minutes this time.  Very quick.  I felt so much better by Monday.  I have also learned how to stay “ahead of the pain.”  I learned this during my last stretch.  I used to think that I needed to be brave and not ask for pain meds until I really needed them.  Wrong!!  As soon as you feel the least twinge of nausea or you have that indication of an oncoming migraine, take the appropriate medication.  Trust me on this one!  Ask the nurses.  It’s huge.  So even though I felt better, I still felt headaches and nausea coming, but I stayed ahead of the pain!

MARCH 10, 2015

We thought I might have to stay until the 11th for observation, but they decided they would let me go home.  So Paul came back on the 10th and re-watched the video on how to flush my PICC line and change the dressing.  After seeing all the appropriate folks and signing all the appropriate papers, we were on our way north.  It was so good to be back in our own bed…without being tethered to a pole!

MARCH 11-13, 2015

I had to go back to MDA each day for labs and clinic.  My WBC continues to drop.  My platelets bottomed out and are beginning to come back up.  I’m tired.

MARCH 16, 2015 

I went back to MDA again today after having the weekend off for labs and to see my doctor rather than just go to clinic.  My WBC had continued to drop and is now down to 1.0, so I am extremely immunocompromised.  I also got fussed at (reasonably so) for spending too much time outside this weekend "supervising" Paul’s yard project.  No more yard projects until my numbers come up!  I did wear my mask and gloves!!

I also had some oral "mucositis" which is not what it sounds like.  Chemo patients often get mouth or throat sores, or worse.  Mine is mild.  Please pray that it stays that way and gets better soon.

I had to get a neupogen shot which will help stimulate growth of white blood cells and help my body fight against infection.  The one unfortunate side effect is that it causes bone pain...because the cells are so busy in there reproducing that it makes your bones ache.  Really bizarre.

Other than that, she told me to stay put, read a book, write a book, walk, that's it!  No gardening, no kids, no painting the house.  She's no fun! 

So thankful for a great doctor.  So thankful for a great God!

MARCH 17, 2015. 

After a long MDA day, I was exhausted and achey and looking forward to sleep.  Just as I was about to doze off, the second side effect suddenly hit.  My entire face started itching, then my whole head, then body.  Then we remembered when I used to get this the last time.  Two Benedryl didn't even knock it out, so I eventually got up and wrote until 2:20.  Slept a few hours until the itching woke me up again. 

My friend, Russell Lambert, who just went through his SCT, is struggling with side effects at a much higher level right now.  Mine are just tiring and irritating.  His are painful and exhausting. Thank you all for your continued prayers.  God gives grace for the day.

"Trust Me one day at a time.  This keeps you close to Me, responsive to My will.  Trust is not a natural response....  Don't let your need to understand distract you from My Presence.  I will equip you to get through this day victoriously, as you live in deep dependence on Me.  Trust Me one day at a time." (Excerpt from Jesus Calling)

"O Lord Almighty, blessed is the man who trusts in you." Psalm 84:12

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34

"In Him our hearts rejoice, for we trust in his holy name."  Psalm 33:21

"You will keep him in perfect peace whose mind is stayed on You, because he trusts in You." 
Isaiah 26:3

March 9, 2015

T-Cell Day...And He Sent Rest

I opened my Jesus Calling devotional this morning, and the first word was "Rest."  How appropriate on a day that could be filled with apprehension. It went on to talk about a "cushion of calm at the center of your life, where you live in union with God...where you are energized, filled with His love, joy and peace."

My hospital door opened first thing this morning, and who should walk in but my sweet Myra!  For those of you who have followed our journey, Myra is the nursing assistant who ministered to me in such an incredible way the morning of my SCT in 2012. We looked her up a few months ago, when we were here visiting Matthew, and got to hug her neck and talk with her for a while. We learned then that she was planning to retire April 15, just after her 65th birthday on April 9th. We couldn't have been happier for her, but we were also hoping that if I were to be scheduled for anything (I hadn't been at that point) that it would be before April 15!

After we got settled in here last Wednesday, we made a point to find out which wing Myra was working. I am in the southwest wing, and she is assigned to the southeast wing. Pooh!  Well, I got to see her during my walks, and she is as loving, kind, and encouraging as ever. She asked me my room number and said she would make sure to get by on my cell day. Which brings us to today.  She walked into my room and told me that they had reassigned her to my wing for the day!  She had forgotten that this was my exact cell day. She was just tickled to have a day with me. When I told her what day it was, we both knew right then that God had orchestrated that move!  Myra had been with me on cell day #1 and she would be with me on cell day #2.

The last line of this morning's devotion reads "Live in the light of my presence, and your light will shine brightly into the lives of others."

"But the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control."  Galations 5:22-23a

Myra has spent a lifetime exhibiting these characteristics to her patients and I'm sure to her peers. She was a huge blessing to me on one of the biggest, scariest days of my life. And now God has sent her to me again. She is like God with skin on....

"No one has ever seen God; but if we love one another, God lives in us and His love is made complete in us."  1 John 4:12

"Let your light shine before men, that they may see your good deeds and praise your Father in heaven."  Matthew 5:16

Myra, as you begin this new phase of life, as you visit your mother in California, as you dote on your grand and great grandchildren, may "rest" be part of your reward. You have "finished the race," you have "kept the faith.  Now there is in store a crown of righteousness, which the Lord will award you on that day, and to all who have longed for his appearing."  2 Timothy 4:7-8

Thank you, Myra. Well done.