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

He is Still on the Throne!

We had our first of three Christmas celebrations yesterday, which has already put me in the end-of-year reflective mode.  So while these things are fresh on my mind, I thought I would write them out.

2014 has been quite a year.  In fact, the last several years have been doozies…each in their own way.  It started out fairly well, actually, as much as I can recall these days!  Then came April 17 when we lost our Kyla.  Life will never be quite the same without her infectious laugh and a smile that could light up the world.  But life, indeed, goes on.  Just as it did when we lost the many before her.  Painful, different, yes.  But God is still good, and He is still on the throne.

Then came May.  Within a three-day period of time, we found out that my leukemia had returned and that Paul had lost his job of 21 years.  Our sense of security, hope for the future, all hung in the balance.  Insurance, retirement, savings, income level all dropped drastically.  I spent the next months back and forth to MD Anderson.  Paul was carrying the weight of the world on his shoulders.  But through it all, God is still good, and He is still on the throne.

Then just weeks ago came an opportunity for Paul that seemed a direct answer from God.  But it turned out to be completely wrong!  We struggled for an answer.  What were we missing?  What were we supposed to learn?  JOY!  We had been struggling with joy.  No matter what situation you’re in, continue to obey God, to serve and love your friends, and you will find joy.  Period.  Why?  Because God is still good, and He is still on the throne.

On December 29, I start a clinical trial that will hopefully get this cancer back into remission.  (I’ll write more about the details of the trial at another time.)  Paul is working for his best friend, as unto the Lord. 

We move forward confident in the fact that God is good, and He is still on the throne!

 “For the LORD is good; His lovingkindness is everlasting
And His faithfulness to all generations.”

Psalms 100:5

Pay It Forward

August 4, 2014

For me, it was just another day on the 8^th floor MD Anderson diagnostic lab waiting for my blood draw.  This time it was to check out what could be going on with this rash that keeps reappearing.

But sitting across from mother and me was a gentleman, a good ten plus years older than I, his wife, and daughter.  He was holding “the packet.”  I KNOW “the packet.”  And I know that look.  The “deer in the headlights” look!  It was his first day.

I quietly listened as they talked amongst themselves, asking unanswerable questions.  I saw the fidgeting, the long stares at others around them.  I knew everything they were thinking.  We, too, had a day one.

The nurse called my name and I took my turn getting vials filled to be tested for one thing and another.  When I walked back to join mother, I stepped across the aisle and smiled at the gray-haired man.  “Is this your first day?” I asked.  With a lost look of appreciation, he smiled and said yes.  I asked what he had, and his wife (the newly appointed caregiver) said that they have had a difficult time diagnosing him but had finally decided on…and then rattled off one of the long, rare acute leukemia’s.  :(  I gave my biggest smile and said, “Oh, you've got one of the long named ones!!” :)

They asked me a few questions about my disease and treatment, and I simply tried to encourage them with the experience that I have had.  To take one day at a time.  That he’s in the best possible place.  To hang on to God and family.  Drink!  Rest!  Walk!  And do whatever the doctors ask you to do…and then some. 

Mother was so funny.  She ran a bit ahead and started asking about things that he had no clue about yet!  It was only his first day!!  One step at a time.

Paul and I feel very strongly that anytime we’re at MDA and see a “newbie,” we should be open to God’s leading to talk to them.  We remember how we felt.  Lost.  Afraid.  While the team there is so incredible, it would have been great to talk to someone who had actually walked the walk!

God has given me several of these opportunities over the past months, and the folks have always embraced the conversation (and me) and seemed genuinely appreciative.  I guess God made me a talker for a reason!

After a few more questions, we exchanged names.  His name is Edward.  I told him that I would not have any trouble remembering his name since my daddy’s name was Edwin and my husband’s middle name is Edward.  :)

So I have added another name to my prayer list.  I don’t know if I will ever see Edward again.  But God placed me there at that moment for a reason.  I believe He wants me to Pay It Forward.  For all He has done for me and for all who have blessed, served, and prayed for me during this journey of ours, I will continue to "do unto others."

For you, Edward, know that you are being prayed for.  Take one day, one step, one prayer at a time.  Hang on to God and family.  Stay positive.  You are in the right place.  And perhaps this past Monday, God had us in the same place for a reason.

“Beloved, if God so loved us, we ought also to love one another.”  1 John 4:11

It’s Always Something! :/

Many of you have been graciously asking for updates regarding my recent and ongoing doctor appointments.  This summer, it seems that we keep going from one thing to another, with grandchildren visits interspersed throughout.  I am thankful for the fun times with the kids!!

The last major trip down to MDA left us with the decision that we would wait until October before doing the next round of bone marrow biopsies, flow cytometry tests, CT’s, etc.  Well, that was before this nagging cough that I’ve had since last December got uncontrollable.  MDA had already sent me to all of their folks to check for the big stuff, so we had decided that it must just be allergies (which I did not have before the transplant).   :/  So I started on several allergy related meds, sprays, etc.  It seemed to help…for a while.  Then a few weeks ago, it came back with a vengeance that nothing would quiet! 

During this same period, after a weekend at the country, I acquired a weird rash.  Well, at first we thought I had major mosquito bites all swollen up, but it didn’t take long to figure out that wasn’t it!  Four days of insanely itchy whelps followed by red splotches jumping from one area to another finally got my attention and I made an appointment to go to an allergist and sent pictures to my docs at MDA.

Ahhh!  Prednisone!  Relief.  But he didn’t know what on earth was the cause.  It seemed to be heat related, but it was very “atypical.”  Then he gave me some wonderful nasal spray with an antihistamine in it and some cough medicine with codeine.  First night I’d slept in ages!! 

While this was all great, my docs at MDA were not happy.   They do NOT like rashes!!!  So Monday, even though I was cleared up for the time being, I went down for labs and a “viewing.”  Unfortunately, some of my lab numbers that I have had trouble with in the past were stirred up again.  Things that sound completely benign and silly compared to talking about cancer and the like. 

First, my Potassium serum count is up again.  It has done this many times over the months, now years.  Doesn’t sound like a big deal, but it has to do with your kidneys and can affect how your heart works.  So it’s kind of a big deal. 

Second, my Calcium serum count is up again.  This is a bigger deal.  I have already been to the endocrinologist at MDA and been tested and discovered that I have a goofed up parathyroid gland.  (Not the same as the regular thyroid gland.)  The parathyroid hormone regulates the amount of calcium in the blood and in the bones.  So my calcium is continuing to leach out into the bloodstream and not be absorbed into my bones, thus worsening my osteopenia/osteoporosis condition.  Long story short, they have been watching this number waiting to see if they are going to have to remove my parathyroid gland.  Looks like they probably will.  :/  The frustrating thing is that I have had my whole body rebuilt without being cut on, and now I’m going to have to have surgery because of this silly little gland.  Oh, well.

Next Monday, they want me to come back to see the GVHD doctor and the transplant dermatologist (who knows a whole lot more about rashes in transplant patients than the normal allergist or dermatologist!).  Plus, I have to re-do all my labs.  They are pretty sure that my rash is due to “immunodisregulation.”  Yeah, I don’t think it’s a word either, but it just means that even though my immune system is better than it was when I was right out of transplant, I will never, ever have a normal immune system again, and I will be prone to get weird stuff.

Then, instead of waiting until October, Dr. Shah wants to do another bone marrow biopsy, flow cytometry test (blood and bone), CT, chimerism %, etc. in August instead of waiting until October.  Sooooo, besides my granddaughter’s birthday, Paul’s birthday, great niece and nephew’s birthdays, trips to the country, still trying to figure out the details of Paul’s new job/insurance/retirement plans, projects to do now or later, and when to go back to Dallas so my daughter can catch a nap and a break from those three adorable little hooker dookers…August is going to be full.

So as I keep saying…one day, one prayer, one step at a time. 

I sure am glad the fatigue is better!!  :)

He Called!!

June 10.   My stem cell coordinator called today.  They finally made contact with my donor.  Rather he finally contacted them back saying it was ok to tell me who he is. So I'm about to send the letter I wrote over a year ago to Mr. Richard Maloney of Massachusetts!  Thank you for saving my life!! 

June 11.   He called me this morning!  He read my letter and my ENTIRE blog last night!  What an awesome conversation! It's like having a brand new old friend.

Richard is a mailman, father of two.  His girlfriend is a nurse.  His daughter works oversees with children.  His son is in the medical field in the NE as well.  He has only been to Texas while on a flight stopover in Dallas!  He was given many opportunities to change his mind after finding out that he was a perfect match for me, but he never did.  He kept going.

How do you thank a complete stranger for giving you a second chance at life?  Are there enough words?  Fortunately, stem cell donation does not require the same TOTAL commitment as organ donation!!  But it IS a commitment!  He had to take time off work, take certain meds, and undergo some uncomfortable days and recuperation time.  And he did that for a complete stranger with no idea of whether or not it would work. 

It did, Richard.  There have been a few hiccups, but it’s working.  This is about how long they would have given me without the transplant.  And I’m still here!!  I have seen another grandchild born.  Had another anniversary.  Spent time with family and friends.  And I have simply loved living every single day that God gives me. 

And that’s what I plan to continue doing.  One day, one prayer, one step at a time. 

Thank you, Richard.  Thank you for giving me back my life.

Summer Shockers

I’m not sure why I have waited this long to document the news and happenings of the past weeks.  I think perhaps that I needed some answers, some resolution, before I put it here.  Of course, everyone else already knows!  Family, friends, Facebook!!  Everyone has been praying and encouraging.  So I’m really not sure why I waited….

Early May.  I had been waiting for my call from Dr. Shah regarding my bone marrow biopsy (BMB) results.  I had already gotten a good report on my labs and CT for my two-year post stem-cell check up.  I missed her call on Friday, May 9, while at the grocery store.  She had left a message asking for a good time to call back.  Her message seemed odd to me.  If everything had been ok, she would have just left a message saying so….  Hmmm.  It was Mother’s Day weekend, and we were busy with family.  I didn’t mention the phone call.

Monday afternoon, May 12, Dr. Shah called with results that none of us were expecting.  Minimal Residual Disease (MRD).  And my donor cell count had reduced back to 96% from the 100% it had achieved.   It doesn’t sound horrible where you may be sitting, but it was not good news.  As the eternal optimist, Dr. Shah scheduled another biopsy to rule out a false positive and/or check for possible growth.

Almost immediately, Paul went back into research mode, but there just wasn’t enough information for anything conclusive.  We would just have to wait.

Three days later, on May 15, after 21 years with the company, Paul lost his job.  Out of the blue, unmerited, managed out.  Well, that’s one way to get your mind off cancer!  They not only took his job, but our health and life insurance, his truck, his phone, his retirement plan….  He had been completely devoted and dedicated to his company.  This was more than just losing a job.  It was like losing a part of him. 

The one highlight of the last few weeks was our fourth anniversary.  This was Paul’s year to plan, so of course it was already paid for.  :)  We first spent time in Fredericksburg, got rained out of Cascade Caverns again, climbed Enchanted Rock, visited some old and new wineries, and then came the surprise…Cypress Valley Canopy Tours.  We stayed in a tree house in the woods!  There was a beautiful private bathhouse with a rock waterfall spa across the bridge.  The next morning, we enjoyed the zip-line tour on the property.  Amazing.  It was wonderful to put all our concerns aside for a few days and just enjoy each other.

June 11 was my follow up bone marrow biopsy.  June 12, Paul accepted a position with Graco Mechanical, working for his best friend.  How cool is that?  They have been in the same field for all these years but never had the opportunity to work together.  Paul is looking forward to working in a more positive environment.  There are some concerns regarding such a big change in our insurance, etc., but God is bigger than insurance! 

June 18, I got my call from Dr. Shah with the results from my follow up BMB.  The good news was that the abnormal cells (MRD) had not increased.  The bad news was that it had not been a false positive as was hoped.  The leukemia is trying to inch back slowly.  She did not have the results of my chimerism test (donor %), so we would have to continue to wait on that.  If the % continues to fall, then action will most likely have to be taken…such as a donor lymphocyte infusion (DLI).  It’s like a stem cell booster.

Dr. Shah is consulting with my leukemia doctor, Dr. O’Brien, to determine the ongoing course of action.  She feels like a less invasive course is best for now.  That would include regular blood draws to check CBC counts and flow cytometry via blood instead of bone marrow.  I have an appointment to see Dr. O’Brien on June 30 and am scheduled for another BMB in October. 

We were able to take an additional week off before Paul started his new job and go back to the country for several days.  My daughter and her family came for four of them, and we had a family get together for my brother’s birthday.  I love our time in our little slice of heaven, and I love sharing it with the people dear to me!

  

June 26.  I got word from Dr. Shah this morning that my chimerism results (donor %) came back at 97%!!  That's UP a % from last month!!  Thank you, God!!!  They still want me to meet with Dr. O'Brien, my leukemia doctor, on Monday to re-do my labs and set up a new follow up schedule.  But for now, as far as I understand, I do not have to proceed with a DLI or any other procedures.  Thank you, thank you, thank you to all who continue to pray for me!!!

The past couple months have felt like an emotional roller coaster, but God has continued to ride it with us!  What a difference that makes!!!

Romans 8:31  “What, then, shall we say in response to these things?  If God is for us, who can be against us?”

What’s Your Resurrection?

As we have begun to prepare our hearts and minds this week, first with the celebration of Palm Sunday and continuing with the remembrances of Passover, Good Friday, and Resurrection Sunday…or Easter…my thoughts turn to how He has brought me and so many others back to life.  It’s amazing how surviving a thing like cancer can make you stop and realize how many things He has already saved us from!  We just don’t always take the time to think about it.

2 Corinthians 1:10  “He has rescued us from a terrible death, and He will continue to rescue us.  Yes, He is the one on whom we have set our hope, and He will rescue us again.”

Colossians 1:13  “God has freed us from the power of darkness, and He brought us into the kingdom of His dear Son.”

2 Timothy 1:9  “He saved us and called us with a holy calling, not according to our own accomplishments, but according to His own purpose and the grace that was given to us in the Messiah Jesus before time began.”

Over the centuries, God rescued His people countless times.  He rescued them from slavery in Egypt.  He rescued them from numerous enemies and afflictions.  And time and again, they turned back to their own ways.  We read those stories and wonder how they could have been so dumb!  Yet we do the same things…just sometimes with a bit more sophistication or secrecy.  We don’t all get together and build a big idol because our leader didn’t make it back down the mountain in time; but we do have our idols…things that we can touch and see and put ahead of our Lord. 

What has Christ saved you from?  What has He saved you to?

Romans 6:4  “We were therefore buried with Him through baptism into death in order that, just as Christ was raised from the dead through the glory of the Father, we too may live a new life.”

Romans 13:11-12  “Do this, knowing the time, that it is already the hour for you to awaken from sleep; for now salvation is nearer to us than when we first believed.  The night is almost gone, and the day is near.  Therefore let us lay aside the deeds of darkness and put on the armor of light.”

Ephesians 5:14  “For this reason it says, "Awake, sleeper, and arise from the dead, and Christ will shine on you."

Blessed Easter week!

Tamara

World Cancer Day - He's Not Done With Me Yet!

"Therefore if any man be in Christ, he is a new creature: old things are passed away; behold, all things are become new."  2 Corinthians 5:17

Today is +644 days since my transplant.  It is also the day the world shines a light on cancer... celebrates survivors, mourns the lost, and focuses on the need for continued research.  It has occurred to me recently that this is about how long I would have had to live without my transplant.  Instead, I am in remission, regaining strength and energy, and about to witness the birth of my fourth grandchild.  Amazing!

I chose the verse above because I AM a new creature!  So many things have become new!  But this isn't just because of the transplant.  I think of what my life would have been like without God.  I think of what my choices would have been like without the guidance of the Holy Spirit.  I made enough mistakes as it was!  I have spent quite a bit of time lately looking at the choices of this world, and it is quite saddening.  I look at what our society finds appealing, and I find it appalling.  I am not ashamed or afraid to walk a road less travelled.  It was what I was taught, and after a lifetime of comparing the alternatives, it is what I choose.  

I wish I could just implant this knowledge to others, but it seems that all I can do is continue to live and speak the same tune.  Maybe that's why God gave me these +644 days and counting.  I guess He's not done with me yet.