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.

February 4, 2015

Chemo. It Ain’t No Party!

I got a call from Dr. Shah this morning to tell me that the 30th birthday surprise party I was planning for my daughter, Bethany, would have to be cancelled…or at least rescheduled until significantly later.  Sorry, baby girl.  (Yes, she and I have already talked.)  Cancer can be a real party pooper!

This whole trial thing was supposedly going to be a walk in the park!  I give them 21 vials of blood; they make little killer dudes out of my T-cells, put them back in eight weeks later, and whalah!  Well, I learned this morning that it’s not going to be quite that easy.  Even though we expected some possible side effects, we did not expect this….

They have now decided that I will be inpatient and receive a 3-day round of two chemos [fludarabine (which I’ve had) and cytoxan (which I have not)], then a day to receive the cells, and a day to make sure I don’t have any weird side effects from the cells.  So just five days or so, as long as everything goes as planned.  Dr. Shah sounded almost as upset as I was when she told me.  Neither of us wanted to have to go through all this again.  But she said that it would be better because it would make room for the T-cells to do the work they are being created to do.   Well, when you put it that way….

I already know the side effects I have with fludarabine :( and cytoxan is the one that makes you lose your hair!  Man, I just got it all fluffy again!  She said that the dose may not be enough to make me lose it, but we won’t know until we’re there.  So, here we go again.  Low blood counts, fever, nausea, chills, no appetite….  Let me see, chemo or planning my baby girl’s birthday party?  Pretty sure I’d rather plan a party!  But if I have another round of chemo now along with these fighter T-cells, maybe I’ll be planning her 40th birthday party ten years from now!  That would be most excellent!!

So, sweetheart, plans have changed for now.  But know that Mama’s got Plan B cooking!  Cancer ain’t gonna take the party outta this gal!

January 14, 2015

All Heart

It was with very heavy, yet thankful, hearts that my daughter, Bethany, and I boarded a plane to Seattle, early last Friday morning.  Our life long friends' dear thirteen year old son had suddenly gone to be with the Lord.  Much too soon.  Much too young.  Jameson was born with severe heart issues, has had several surgeries since birth, and has been their little miracle boy all along.

But not many would know it.  He didn't let what he couldn't do slow him down.  He just found other ways to live and love life to the fullest.  At his memorial service on Saturday, I was overwhelmed by the stories from family and friends, his teachers, his principal, and many others who knew him so well, testifying to his kindness, his love for family and others, his funny antics, his devotion to scripture, and most importantly his love for his Lord.  One comment particularly struck a chord with me.  "He would rather be reconciled than be right."  And he was only thirteen!

This young man may have had a greater influence and testimony to others during his short life than most of us do during a full eighty plus!  God knew that day in May 2001 how many days Jameson would have, just as He knows ours.  Jameson had a vast appreciation for life, for family, for God, for baseball and fishing, and for his friends.  It showed in all he did.  It showed in his words, in his choices, in that quirky smile.

From the time Jameson fell to the last of our goodbyes, his family, though grieving, were firmly grounded by our Lord and in His Word.  Much comfort was shared through verses and passages that shined light back to the glory and majesty of God.  Even Jameson had highlighted Psalm 24 in his own Bible.

"The earth is the Lord's, and the fullness thereof, the world, and they that dwell therein.  For he hath founded it upon the seas, and established it upon the floods.  Who shall ascend into the hill of the Lord?  Or who shall stand in his holy place?  He that hath clean hands, and a pure heart, who hath not lifted up his soul unto vanity, nor sworn deceitfully.  He shall receive the blessing from the Lord, and righteousness from the God of his salvation.  This is the generation of them that seek them, that seek thy face, O Jacob.  Selah.  Lift up your heads, O ye gates; and be ye lift up, ye everlasting doors; and the King of Glory shall come in...."

The Clements and Martin families will forever miss their precious Jamers.  His siblings Isaiah, Shepard, Lincoln, and Avalee will forever miss their big brother.  But God gave the good gift of Jameson for a season, and for that we are all thankful.  As we pray for the hearts of this family, may we be challenged by the life of this sweet be kind, to love God and His Word, to love family, to be a good friend, to have fun, to live life to the have a heart like Jameson.

January 5, 2015

Hope for the New Year

I have to admit that we did not mind seeing 2014 draw to a close.  It was a difficult year for us, for our family.  But the word the Lord gave me for 2014 was JOY!

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds,
because you know that the testing of your faith produces perseverance.”
James 1:2-3

As we approached 2015, it was with hopeful hearts for a fresh year.  But then it began with the unexpected loss of a dear friend’s child.  A child who had already been a miraculous gift for thirteen years.  Our hearts were broken for this sweet family.  Where is the hope in this?

“But I would not have you to be ignorant, brethren,
concerning them which are asleep, that ye sorrow not,
 even as others which have no hope.”
1 Thessalonians 4:14

“And we know that all things work together for good to them that love God,
to them who are the called according to His purpose.”
Romans 8:28

The Lord gave and the Lord has taken away;
 may the name of the Lord be praised.”
Job 1:21

"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

We also found out just before the end of 2014 that I would be entering a clinical trial to hopefully rid my body of the remnants of my cancer.  Along with that, they will be removing my parathyroid gland on January 21st with the hope that my calcium levels will begin to regulate and I will stop spiraling downward with osteoporosis.  Quite a busy way to start the year!  And one that gives hope for the future.

For I know the plans I have for you, declares the Lord,
plans to prosper you and not to harm you, plans to give you hope and a future.
Then you will call on me and come and pray to me, and I will listen to you.
You will seek me and find me when you seek me with all your heart.
Jeremiah 29:11-13

“Yes, my soul, find rest in God;
 my hope comes from Him.”
Psalm 62:5

We, as I am sure many of you, have other challenges facing us head on this year.  Many are due to the changes incurred during 2014.  I’ve never been a big “change” person, but when push comes to shove you just keep moving forward. 

"So we do not lose heart.  Though our outer self is wasting away,
our inner self is being renewed day by day.  For this light momentary affliction
is preparing for us an eternal weight of glory beyond all comparison, as we look not
to the things that are seen but to the things that are unseen.  For the things that are
seen are transient, but the things that are unseen are eternal."
2 Corinthians 4:16-18

"Through Him we have also obtained access by faith into this
grace in which we stand, and we rejoice in hope of the glory of God.
More than that, we rejoice in our sufferings, knowing that suffering produces 
endurance, and endurance produces character, and character produces hope,
and hope does not put us to shame, because God's love has been poured
into our hearts through the Holy Spirit who has been given to us."
Romans 5:2-5

“Rejoice in hope, be patient in tribulation, be constant in prayer.”
Romans 12:12

“For whatever was written in former days was written for our instruction,
that through endurance and through the encouragement of the Scriptures
we might have hope.”
Romans 15:4

“Faith is the assurance of things you have hoped for,
 the absolute conviction that there are realities you’ve never seen.”
Hebrews 11:1

"For in this hope we were saved.  Now hope that is seen is not hope.
For who hopes for what he sees?  But if we hope for what we do not see,
we wait for it with patience."
Romans 8:24-25

And so we begin this year full of hope, not based on anything we have yet seen, but simply because of WHO HE IS!  I refuse to let the worries of this world tarnish the truth of the grace, mercy, and hope that we have in Him.

"Therefore gird up the loins of your mind, be sober, and rest your hope
fully upon the grace that is to be brought to you at the revelation of Jesus Christ."
1 Peter 1:13

This year, we also look forward to new lives in our families with two new grandchildren.  Continued hope for the future.

And finally, my verse for 2015….  I’m bringing my Joy with me.  May this encourage you, as well.

“May the God of hope fill you with all joy and peace in believing,
so that by the power of the Holy Spirit you may abound in hope.”
Romans 15:13

My hope is built on nothing less
Than Jesus' blood and righteousness;
I dare not trust the sweetest frame,
But wholly lean on Jesus' name.

When darkness seems to hide His face,
I rest on His unchanging grace;
In every high and stormy gale
My anchor holds within the veil.

His oath His covenant and blood
Support me in the 'whelming flood:
When all around my soul gives way,
He then is all my hope and stay.

On Christ the solid rock I stand;
All other ground is sinking sand.
On Christ the solid rock I stand,
All other ground in sinking sand.

When the last trumpet's voice shall sound,
O may I then in him be found.
Clothed in his righteousness alone,
Faultless to stand before his throne.

December 29, 2014

Round 2…Here We Go Again!

Back in May during my two-year check up, we discovered that my leukemia had returned as “minimal residual disease” or MRD as the powers that be refer to it.  Throughout the next months, they continued to test and check to determine any growth pattern.  While it has grown, it has still stayed at the “minimal” level.  While that is good, it has not made my doctors feel that much better about my being out of remission.  The reason is that they cannot predict how long it will remain “minimal.”  It could be a few months, a few years, or a few days.  And my stem cell doctor did not work so hard to save me just to let something slip in and mess things up!  :) 

So besides other matters such as unexplainable rashes, a throat biopsy that came back with a mixed message, and a parathyroid that still needs to come out, Dr. Shah has been looking at two possible options, actually three.  1) A DLI, donor lymphocyte infusion, which is where they use my donor’s lymphocytes for a mini transplant booster.  The problem with the DLI is that there is a high risk of GVHD (graft versus host disease).  2) CAR (chimeric antigen receptor) T-Cell Gene Therapy, a clinical trial where they use my cells or donor cells (they will use mine in my case) to extract T-cells and engineer them to attack B-cell cancers that have a protein called CD 19.  Or 3) Wait and do nothing until I am more symptomatic.  There are new leukemia drugs that were not available in 2011-12. 

The problem with option #2 was that I had not qualified for the trial, so we have been in wait mode…until late November when the specifications were changed and Dr. Shah shoved me in while the door was open!  The reason she opted for #2 instead of #3 is that while it is a relatively new therapy, it is not far from what has already been done to me, so the side effects aren’t much different than what I have already dealt with.  In fact, they should be much less (best case scenario).  “Lowered immune system, hives, rash, low blood pressure, muscle pain, joint pain”…whatever.  However, since my cells are mostly donor cells, there is still a significant chance of GVHD, even though I am getting “my own” cells.  The greatest, but least likely, risk is that my old cells that get mixed in with the assassin group start attacking my graft.  If that happens, we would have to go all the way back to square one with another stem cell transplant.  :/ 

But the possible benefits far outweigh the risks!  Her thoughts are that if this can get me back into remission while I am still “young and healthy” (I love when she says that) that we’ll still have #1 (DLI) and #3 (new drugs) in our back pocket for the any future bouts.  The more chemo you use early on, the less effective it is later…the fewer options are available.  I’m still young.  I need to have as many options later on when I really am “old.” 

So, today, December 29, I signed my consents; then they proceeded to take 21 vials of blood to use for gathering the T-cells.  (Almost as much as in a can of Coke.)  The first 18½ flowed out fairly well, but then I must have just run dry!  :)  They worked with my veins and re-stuck me, which made #3 for that arm for the day (labs and two draws).  Nothing.  They were about to just make do with what they had, but I insisted that we weren’t stopping until they had all 21!  If we were going to do this thing, we were going to do it right!  So they warmed up the other arm, finally found a vein, and got the last few vials.   Done!

Over the next 50 days, they will genetically modify the T-cells and turn them into little assassins.  Seven to eight weeks from now, I will receive my T-cell infusion, along with meds to help avert allergic reactions.  In between now and then, I will have to get another CVC inserted for the receiving of the cells, just like I had for my stem cell.  Somewhere in here, they are probably going to remove my parathyroid…before the cells go back in and the immune system goes down.  Afterwards, I will start the routine follow up schedule similar to post transplant….  This is a 15-year trial!  Praying that I make all 15 years!!  :) 

I decided to wear my special #BTHOCANCER t-shirt that we have in support of our friend Russell Lambert who is currently fighting a stubborn ALL.  Today I am wearing it for us both.

Please pray with us that this therapy produces the desired effect of remission. 

“May the God of hope fill you with all joy and peace as you trust in Him,
so that you may overflow with hope by the power of the Holy Spirit.”

Romans 15:13