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.