Twelve Years and Counting

I know it may seem odd to call this day a “Re-Birthday,” but when it’s the day that literally gives you your life back, the term becomes more appropriate.

Back on August 29, 2011, we first heard the words, “I’m so sorry…you have leukemia.” During the next days and weeks as we dove head first into learning everything we could about my particular disease and as they did further testing and found out that mine was a more aggressive than they originally thought, we were so thankfully and quickly accepted into MD Anderson into both the leukemia and stem cells departments. My original oncologist did his residency with my leukemia doctor and interned with my stem cell doctor…so he had incredible connections to get me to the absolute right doctors for my condition. God was orchestrating this whole thing!

By early fall, the search for a stem cell donor was under way. We had several hopefuls that ended up not working out. It was a real roller coaster. But there was this M-41 that kept popping up. Then it was gone for a while. Then he was back, and he looked like such a good match…I had all these weird markers and it looked like M-41 was the best fit. He was finally contacted for confirmed interest, then for first round of testing, then finally for the apheresis process. [Just a note here…M-41 ended up being a wonderful mailman from Massachusetts who donated AGAIN for me when we needed addition cells for my (2) Donor Lymphocyte Infusions (DLI’s)]

Pre-chemo treatment was more difficult that the actual stem cell transplant! The day before and of the transplant, I was very anxious. And God sent an angel in the form of a nurse named Mira who spoke truth and peace over me in the early hours of transplant Day 0. I will never ever forget her. She was on my floor again when I was getting my CAR T-Cell Trial that didn’t go real well and I ended up back in the hospital with an infection for six weeks…. But she made sure that she found time to get over to my room even though I wasn’t in her route. She was absolutely God’s angel. I was also thankful to be there at that time because she was retiring in just a few weeks! I had the opportunity to write a letter to be included in her retirement package letting her know what a difference she made in my life there at MDA. God’s timing is always right.

While my stem cell transplant didn’t get rid of my leukemia, it kept it managed for a couple years…long enough for them to invent something else to try, which is what my journey has been about. Each treatment has kept me alive long enough until the next thing…and the next thing. Until this last thing…my AVO trial. It has definitely squished it down the best! While it’s still not gone, it’s giving me more time and hope than any other treatment. And I can do this one again when needed. That’s a rare thing.

So, I’ve tried not to go into all the technical stuff because that’s not what really matters. What matters is that by the grace of God and the wisdom of the doctors at MDA and the prayers of many and the care of my sweetheart and many family and friends…I am celebrating 12 years since the day I received my millions of new cells that gave me new life. (Paul knows the number.) And to M-41…I am forever thankful for your gift. You saved my life.

 

 

It’s All in the Numbers

It was exactly 458 days from the day we were married until the day I was diagnosed. May 29, 2010 - August 29, 2011. Tomorrow will be 11 years and 6 months, 138 months, or 4,202 days that I…we have been fighting this insidious disease known as leukemia.  
We have learned how to read my white blood counts, my neutrophil counts, my lymphocytes, my platelets, and more numbers than you could ever imagine. We feel like we could basically have a degree in this by now!
The number that matters the most now is the number of cancerous cells per 10,000. In my testing last fall, I had reached the seemingly unreachable stage of MRD negative, meaning that I only had 1 cancerous cell in 10,000! This was HUGE! But I had five more months of treatment left and they wanted the success to go deeper. My cancer has been exceedingly stubborn and they want to make sure it stays down for a while.
We have seen the results from last week’s test and I have "VIRTUALLY NO B-Cells PRESENT"! PTL! Such a gift! Because this is the end of my trial, they have run a newer, more extensive test that checks to the 1,000,000!! We are hoping those results will be back by tomorrow when we go for all my end of trial results.
My PA, Jill, who has been with us since the beginning, said that it is possible that I will get to “ring the bell!” Never have we ever expected to be able to ring the bell!!!! Having a chronic cancer that we know will come back, we just didn’t think that was in the cards for us. But if these incredibly amazing meds have further shoved this beast down into oblivion, even if it’s just for a few years, this gal will be ringing that bell! And my sweetheart who has been by my side every step of the way will be ringing it with me. Because it’s been our fight, our journey. And then we will be counting different numbers after this! The days that we get to be free from what has enslaved us.

“Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us.” Hebrews 12:1

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

“Count it all JOY, my brothers and sisters, when you encounter various trials. For when your faith is tested, your endurance has a chance to grow.”
James 1:2-3

“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.” Lamentations 3:22-23
 

 

2023...Balance

As another year was drawing to a close, I began to think about what my focus word would be for the coming year.  One year was "transformation." Another year was "growth." So much has been on my plate this past year, I chose the word BALANCE for 2023. Then I started to really research the word....

We ALL have stuff. As I listed out mine to try and organize my mind and life, I could let it either overwhelm me or motivate me. I have my relationship with my God, my husband, my responsibilities in caregiving for my mom, Dixie, taking care of my customers and growing my business, personal development, relationships with six kids, spouses, eight grandchildren, big extended family, church family, friends, taking care of our home (inc. meal planning, shopping, gardening), doctor visits, exercise, Oletha/Fowler Farm & Ranch...and trying to have a life.

Balance. How? What does that even look like? Let's start with the definition. 

    "An even distribution of weight enabling someone or something to remain upright and steady."

    "Having the right amount...not too much or too little...of any quality, which leads to harmony or evenness."

Then I checked the Thesarus and was surprised to see many of the words that correlated to balance.

Harmony, symmetry, evenness, equivalence, stability, steadiness, fairness, impartiality, composure, assurance, self-control, calmness, coolness, ease, tranquility, serenity, confidence, sureness, poise, dignity, presence of mind, collectedness, unflappability.

I could spend a day or more on each of those words! My word of the year ended up being rich in meaning and full of hope and promise. My prayer for these coming days and months is that I will consistently choose to be present in the moment, calm, poised, steady, assured...trusting in Him for strength.

"Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand." Isaiah 41:10

 

A Miracle in the Making

Last week was my month-14 restaging tests for my AVO clinical trial.  I told my team that while I would be excited to see that I had reached full MRD (minimal residual disease), I didn’t really expect to be all the way there.  My body has been a bit difficult over these years in getting to that point. So when the test results came back still positive, I wasn’t devastated or anything.  What WAS exciting to see was that my percentage of cancer burden was down to 4%!!! From 92% when we started!  That just amazes me.  And for that I am incredibly thankful.

But we’re not done.  Soon I will start the “O” portion of the trial…Obinutuzumab.  A monthly infusion, once I get through the ramp up portion.  It’s a third cousin or so to Rituximab, which I’ve had several times over the years.  It is a very effective drug, and I know beyond a shadow of a doubt that it will be the last step necessary in getting me across the line.

Now I could have said all of this in a simple FB post…so why the blog?  Well, there were more conversations last week that reminded me of what God has done in and for me.  

First, I had an appointment with my fatigue doctor.  Yes, I actually have one of those.  Have had her since just after my stem cell transplant almost ten years ago.  As we talked, virtually these past few times, she told me that I am her longest tenured patient.  Most others are either cured/in complete remission or die.  I’m like her energizer bunny.  I just keep going!  She, like many other of my amazing doctors, have become so much more than just my physicians.  They are my friends.

Then I had my bone marrow biopsy.  As I visited with the team of two who were to perform last week’s procedure, I told them that it was my 37th BMB.  The look on their faces!! They said the most they had heard of so far was 20! (And this is at MD Anderson!) Lots of people can live a long time with CLL, but that’s usually when the disease is inactive or in "watch & wait."  I have lived over ten years with active CLL. I was in MRD for a little while after my stem cell transplant, but then it came roaring back.  Six treatment plans, 37 BMBs, I haven’t counted all the CTs, and I wish I had a dollar for all the labs! They wish they had all my dollars for all the labs! :/

God must have a plan for me, a reason that I’m still here.  So I continue to listen each day and embrace every moment.  I have a lot of friends who have had or have cancer and we all agree that it changes your perspective.  As I listen to my doctors and techs and realize that I am one of a few who have walked this path, I am humbled and thankful. Life is precious and He is working miraculous things in me every day.

“But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:31

“…the joy of the Lord is your strength.” Nehemiah 8:10 

What Drives Others Apart, Draws Us Together

Yesterday, my mom and I were talking on our way to her infusion appointment about the need to move forward with selling her house and all that entails.  In the middle of the conversation, she said that she doesn’t want to cause a problem in my and Paul’s marriage.  I almost laughed as I reached over and took her hand.  “Mom, your being at this stage in life is the least difficult thing we have endured during the past twelve years!”

 

We have walked through years of cancer, countless trips to the ER, six different treatments, near death, numerous surgeries for us both, PT’s, loss of employment, income, insurance, vehicle, changes in church homes, difficulties with kids, extensive time apart from kids and grands due to my immune system and then distance and then Covid…and through all of it, we have become stronger, more connected, more dependent on one another and on God.  We are better…and we are better together.  While trials often drive others apart, they draw us together.

 

So even though there are days when I all I get done are things for mom, I know that these days are numbered.  When I get impatient, I have a partner who is patient in that moment.  When I get frazzled, I have a partner who is calm.  And it goes both ways. We balance each other.  And isn’t that what marriage is all about? In Ecclesiastes 4 it talks about two being better than one because they can help each other…and if one falls, the other can reach out and help.  There are so many verses about living in harmony, being of one mind, and loving each other sacrificially…there is power in a pair.

 

“Put on then, as God’s chosen ones, holy and beloved, compassionate hearts, kindness, humility, meekness, and patience, bearing with one another...forgiving one another…. And above all these put on love, which binds everything together in perfect harmony.”

Colossian 3:12-14

So This is What Normal Looks Like?!

I sat and stared at my blood work results with a quizzical look on my face.  My PA, who has been with me since the beginning…even through a change of doctors, smiled and said, “That’s what normal looks like!” 

 

It’s been a LONG TIME since I’ve seen those numbers!  I didn’t even know how to respond.  But as cautiously exciting as it was, there were still more tests to perform before we could start throwing a party!  Next up was my CT and Bone Marrow Biopsy.  My 37^th!  These tests would reveal the in depth results of what’s going on in my bone marrow and throughout my body.  I have been on this AVO clinical trial for nine months now, and it was time to see just how well it was working.

 

When you have cancer, you get used to waiting. Waiting to see, waiting to go, waiting to hear, waiting to decide…just waiting.  So as such, we had to wait for results.  We’re used to waiting.

 

But you also learn to be proactive, to take charge of your health and wellness plan.  So you communicate.  You ask.  You participate.  You research.  You stay ahead of the game. 

 

So when I saw that my results were starting to come in on My Chart (online), I sent a message to my team to help with the interpretation.  I can read and understand lab work all day long, but those BMB’s still throw me for a loop! 

 

Shortly, I got a message from that same PA that my percentage of cancer burden in my bone marrow before starting the trial had been at 92%!  That is pretty significant.  It is now, after only nine months on the trial, at 15%!!! WooHoo!!! Now, this does not mean that I am in remission or in MRD (minimal residual disease) yet.  BUT it does mean that I am ON MY WAY!!!!! The next CT and BMB check will be at month 14.  If at that time I am not down to MRD, they will add the “O” of the AVO portion of the trial.  Currently, I am taking Acalabrutinib and Venetoclax.  Obinutuzumab is next on the list, if necessary to get me to MRD. 

 

CLL patients are never really considered “cured” like many cancer patients are.  There is always this little tiny bit left….  I don’t ever get to ring the bell.  BUT, these new immunotherapies are providing longer lasting remissions giving those of us with high risk CLL the chance at a much longer life.  I’ll take that any day of the week!

 

The Lord has seen fit to use the prayers of many and the hands and wisdom of those at MD Anderson to continue to buy me time until this new protocol was created. 

 

God’s never early, never late, but always on time… God’s perfect timing does two things:  It grows our faith as we are forced to wait and trust in God and it makes certain that He, and He alone, gets the glory and praise for pulling us through. 

 

“My times are in your hands; deliver me from my enemies and from those who pursue me.  Let your face shine on your servant; save me in your unfailing love.  Let me not be put to shame, O Lord, for I have cried out to you; but let the wicked be put to shame and lie silent in the grave.” Psalm 31:15

 

Be silent, Cancer.

 

 

“You’re Still Alive!!!!”

As I walked back in the front entrance of MD Anderson after having been across the street getting my CT, the masked nurse handing out yet another new mask to don wildly exclaimed, “You’re still alive!!!!”  “Well, yes ma’am, I am!” I replied!  Cathy had been my first nurse in the Stem Cell department years ago.  I’m amazed that she still recognized me after all these years, wearing a mask, and with all the patients that she sees, but we did spend a LOT of time together.  She was my beloved Dr. Shah’s nurse before she got whisked away to mentor a new doctor and teach him the MDA ropes.  (She’s now been through several newbie’s! Bless her heart!)

 

We caught up on all my treatments and her assignments and I went on to my next appointment.  But that encounter pretty much wrapped up all I wanted to say.  For those who would like more of the actual details, stay tuned.  I have neglected writing my blog for a while.  Life has gotten even busier with juggling my business, my MDA schedule, taking care of my mom, plus regular home and family stuff.  This outlet has unfortunately gone to the bottom of the list.  But with Cathy’s exclamation, I knew a blog post was in order…then with the news I was about to receive, there was no doubt!

 

After all my pre-tests in January (when they found the dreaded spot in my kidney), I started my newest leukemia trial on February 11…just before the infamous Snowmageddon here in Texas!  Brrr!  Still makes me shiver just thinking about it!  And many are still recovering from its damage.   Mercy! 

 

I am part of the AVO trial…Acalabrutinib, Venetoclax, and Obinutuzumab.  I know…who makes up these names?!!  As a randomized trial, ½ of the participants got the O drug up front and the other half (including me) went straight to the A drug for two months, then on to the V drug, starting with the ramp up dose of 20 mg and increasing each week until we got to the full dose this week of 400 mg.  If at month 14, I am not where they want me to be, I’ll get the O drug on the back end. 

 

BUT, my counts have already dropped from the crazy high numbers they were to the high normal range as of this week!!!  I have NEVER experienced a protocol that has worked this well, this fast!  What’s even more exciting is that I learned that folks who have been on Venetoclax prior to this trial have experienced long term MRD (minimal residual disease)…4-5 years!  In my disease, there is no cure.  But detectable and/or undetectable MRD is achievable. U-MRD is determined by a Flow Cytometry test and defined as not finding any CLL cells down to a level of one in 10,000 cells.  It helps determine decisions about therapy, is a marker for being progression free, and determines overall survival.  We’ll do that at month 14.

 

On a second let’s see how great of a 60^th birthday a gal can have note…I met with my kidney doctor for my CT results.  After asking me all the typical questions, the results were pulled up on the computer and with quite an air of confusion, excitement, disbelief, and relief…announced that my mass had reduced in size by HALF!  All by itself!  What?!!  How?  Well, we don’t know!  I asked if it was possible that my leukemia drugs are positively affecting my kidney cancer?!  They said that typically cancer drugs do not cross over.  A few do…but mine are still relatively new and have not been tested in this area.  Well, maybe they should! 

 

They are going to check me again during my next scheduled CT with my leukemia folks at month 9, which will be in about six months, to see if it is continuing to shrink or what.  But for now, my kidney function is normal!  And the mass is much smaller!  

 

So this AVO trial has been a complete WIN/WIN so far!!!  Other than a few minor side effects that are really no big deal in the big scheme of things, I am beyond elated!  Yesterday as I celebrated my 60^th birthday, I could really for the first time in years, confidently believe that I could actually see 70…75!! 

 

I can see my grandchildren graduate.  I can dance at their weddings!  I can hold a great grandchild.  Paul and I really can retire to Oletha.  We really will be able to empty some of that bucket list.  I AM GOING TO LIVE!

Thank you for praying with me.  Thank you for believing with me.  And thank you MD Anderson and all who do research for saving my life. 

 

To God be the glory forever and ever.  Amen.