Exhale

“You’re holding your breath. Breathe. You have been here before and each time God has given just what you need. Just when you need it. Breathe. Smile. Breathe. You will be okay. No matter what.”

And so go my thoughts as I sit in waiting room after waiting room. Waiting on tests, waiting on doctors, waiting on answers.  Sometimes I will find myself almost lightheaded and will realize I have been holding my breath. Not sure why I do that. Not sure what it accomplishes, but it seems to be almost reflexive.

As the doctors and nurses come in I am reading their faces, reading their body language, looking for any clue as to whether the news they bring is good or bad. And then they begin to speak— and I hold my breath. The next words they say have huge weight for me, for those I love, for those who love me.

“You’re holding your breath. Breathe. You have been here before and each time God has given just what you need. Just when you need it. Breathe. Smile. Breathe. You will be okay. No matter what.”

“Well, Mrs. Jackson, we have your reports—- it looks like the spots are stable.” And I EXHALE! Then sings my soul, my Savior God to thee, How great thou art!!!!!” I can breathe without needing internal dialogue!! The air, the fear, the hope, and the worry all come spilling out and I inhale the grace and the joy of the moment! How refreshing to my lungs!

Here are the Cliff’s Notes version of our week:
The thymoma spots look much like they did three months ago. That is fantastic news!We will keep moving forward with a watch-and-see approach which brings me great joy! My doctor wants me to visit again with my surgeon just to make sure that we would not be missing a window of opportunity if we delay treatment, but from an oncology perspective, he is comfortable waiting. He wants me to be very clear on the viability (or not) of surgery and the health problems it might create including loss of lung tissue, breathing capacity, etc.

They reviewed the genetic study with me (although I am now realizing I did not ask enough questions!) One of the genetic tests was designed to measure the favorability of response to immunotherapy. It showed a  90% response rate. Super high. The doctor listened to my concerns about that triggering autoimmune diseases that are often associated with thymoma. He felt that risk was fairly low but did share concerns about other health issues it could cause. immunotherapy can trigger any “-itis” encephalitis, pancreatitis, colitis, nephritis— pretty much everything but gingivitis! Lol!

A study they did on my last biopsy shows that the thymoma sample is not secreting parathyroid hormone (PTH) which is running high. That confirms there is an Adenoma (non-cancerous tumor) one the parathyroid glands causing primary hyperparathyroidism. This has led to 5% bone loss in my left arm over two years and a kidney stone. It will continue to cause problems in those areas until treated. Surgery is required for that but they are also good with me waiting if I prefer. I am weighing the pros and cons. And breathing.

When I was a kid we would often throw objects into the deep end of the swimming pool and have contests to see who could swim down and retrieve them. There were times I would get to the bottom, grab the item, and turn to swim back to the surface and start to panic, feeling like I was running out of air. I would kick extra hard and just when I thought I couldn’t hold it for one more second, I would break through the surface, my fist in the air and as I exhaled I called out, “I got it!!!” That is how I feel right now. It has been a time of diving deep, searching for answers and a little more time before the next big step. I have panicked at times feeling like my chest would burst, but today I broke the surface with my fist in the air, exhaling and thinking , “I got it!!”

I am so grateful to God my Father who extends me grace I do not deserve and could never earn. I am grateful for my family and friends who intercede on my behalf and love me through it all! I am grateful for the gift of time! And I am so grateful to EXHALE!!!


Give thanks to the LORD and proclaim his greatness. Let the whole world know what he has done. Sing to him; yes, sing his praises. Tell everyone about his miracles. 1 Chronicles 16:8-9

The Gambler

The Gambler - Kenny Rogers

If you have been around me much then you are probably aware that I have a soundtrack playing in my mind at almost any moment of my life. The songs may be prompted by the rhythm of my steps, the task I am completing, or a key phrase that you probably don't even realize you said. My poor office mates have grown semi-accustomed to my melodious outbreaks throughout the day. They just shake their heads and roll their eyes.

Recently the lyrics that have been on a continuous loop in my mind are "You gotta know when to hold 'em, know when to fold 'em, know when to walk away, know when to run"  (Thank you, Kenny Rogers). I hope it doesn't sound sacrilegious to say that it has become somewhat of constant prayer in my mind. I am praying that I know when to be still, that I know when to let go of things, that I am wise enough to know when to walk away from something and sharp enough to know when to run!

When we found out in January that The Nuisance was back I had one goal --- to enjoy the boy's senior year and graduation. I was eager to postpone treatment while we ran a genetic study.  When MD Anderson called and said, "Mrs. Jackson, we noticed you have postponed some appointments and just wanted to see if there was a reason" I replied, "Yes, ma'am, two of them! Their names are Sawyer and Spencer."  It bought me the time I needed to soak in every moment of this special time in their lives. It has been a gift that I cherish, but it doesn't mean that I haven't fallen into a rabbit hole of fear a time or two along the way.

Having a rare cancer means that I have a greater responsibility to do some of my own research. It has saved my life multiple times -- literally, but it is also a very slippery slope. It is EXTREMELY easy to get focused on the nuisance and on trying to fix things myself. Shifting focus to the research can easily move my mind from God and fear will POUNCE! Like a beast! It will make me stand in Walmart thinking that I might scream. It will rob me of sleep. It will make it hard to breathe and feel like a huge weight upon my chest. It will isolate me even in a room of people. That fear was exacerbated a few months ago by the loss of my dear friend Jenny. She lost her battle with Thymoma, but it wasn't cancer that robbed her. It was autoimmune diseases associated with the cancer. That has made thinking about treatment options seem even more frightening. What if the treatments trigger a whole new set of issues? I feel so great right now and to think of sacrificing that doesn't sound so great.  AAAAGHHHHH!!!! ("When I am afraid, I put my trust in you! Psalm 56:3" Sorry, I had to type that to get my head back on straight!)

So today I find myself on the road to Houston. I will have CT scans, bone scans, and blood work. I will see a variety of doctors. I will get the results of my genetic study. I will find out what the Nuisance has been up to in the past four months. And I will have decisions to make. I need to know when to hold 'em, know when to fold 'em, know when to walk away, know when to run. Boy, do I need to know that!

So here are my prayers:
I pray for a miracle! What a blessing it would be for the scans to be clear or even stable so that I can go longer without treatment! Oh, what blessing that would be! But even if He doesn't I will praise him still!
I pray that if we need to take some action that I will know what option is best -- the cards on the table appear to be two trials or chemo, but who knows what the dealer will add this week.  One thing I have come to realize is that there are some things worse than cancer - sometimes the treatment is worse than the disease. I know that we may have to jump here sometime and will do so if that is what is required of me, but I am praying that I can buy time as long as possible before we go there. (hum the chorus with me, You gotta know when to hold 'em, know when to fold 'em, know when to walk away, know when to run).
I am also prayerful that if it is time to get additional opinions that I will know that as well. Maybe someone else needs to look at the hand I am holding.

For all the things I don't know right now, here are the things I do:
1) I cannot heal me. Doctors cannot heal me. My healing can only come from my Father. He may use me and physicians, but HE is the great physician.
2) Sometimes, like the thorn in Paul's side (2 Corinthians 12:7-10), God, for whatever reason, doesn't heal like we wish. Instead, he sustains. Instead, he uses the thorn for good purpose. Instead, he uses our weakness to show his power. HE loves me more than I love me and if for some reason this is for my good then this is for my good. I surrender to that.
3) This Nuisance WILL bring glory to God. That doesn't mean I don't get scared. It doesn't mean I don't sink sometimes. It doesn't mean I don't wish it would go away, but BY GOLLY I WILL NOT LET IT RUIN MY LIFE OR STEAL MY JOY! My joy comes not from my circumstances but from the savior who sustains me THROUGH my circumstances.
4) We don't control the hands we are dealt, but we can control how we play the game. "So if you're gonna play the game boy, you gotta learn to play it right." I am trusting God to teach me how to play it!

Please join us in praying for this week and the future. Pray that as we make decisions that we will clearly hear God's prompting and will know when to hold 'em, know when to fold 'em, know when to walk away, know when to run...