June 6, 2018
We met with Dr Kota last night to hear the results of mikes latest PET/CT. You may know already (I hope you don’t ) that these scans use radioactive material ,that is injected into your body to find disease on the cellular level. They are extremely sensitive and pick up most anything therefore sometimes hard to decipher exactly what is going on . They use something called Standard uptake values, SUV to measure the disease. Not exactly the same SUV mike has his PhD in 😉, so forgive us if we get this wrong.
But to the best we can understand - when the light is bright and the SUV is high it’s easy to see disease. However they also use the SUV to see the response to treatment . So when the numbers are middle range they are not sure which directions disease is going.
Pet scans also leave you radioactive for some hours after the test making it against the rules to hug your kids after. I know that’s minor side note but still, while I’m complaining will go ahead throw that in too.
They also do a CT scan at the same time , this gives the doctors what’s called image fusion and allows them to see different views making the scans a little more accurate and able to read.
So Kota showed us the images from his scans from all the way back in 2016 when he was initially diagnosed. (I know why no one offered to show them to us then and I’m grateful we never asked . He was more lit than our Christmas tree that he rolls his eyes at with the amount of lights each year ) He showed us different angles and views of his different body parts that have been effected at different times from this disease. In comparison- for there to be only one spot of concern at his time is a miracle. ( and of course modern medicine and the gift of life from the cells of another human ).
The best news was that his lungs are cleared of the GVHD. This is most likely due to the medication ( Ibrutinib ) the latest fad and super drug in the cancer world. Thank the Lord , for this medication.
So we share all these explanations of the scans because we learned they are monitoring a spot on his pelvis. It is very near the same spot that was radiated before. When they decided to radiate the last spot back in November the SUV reading was in a 10-12 range.
The spot they are monitoring now is around a 4.
Kota wants to do a scan in a short 5 weeks to see what happens with this spot. He will start his next round of treatment Monday. And continue for the following two Mondays. And have the scan on the 27th of July.
If it is gone at that point and no others are there , they will leave the treatment plan as is for now. Three weeks on of chemo ,2 weeks off. And his chemo pill (ibrutibib) for both leukemia and GVHD.
If it is still active or worse they will change plans for treatment all together. Because his lungs have gotten better, there are many more options for treatment.
This was the best news we heard.
Mike in true Mike fashion- “ So I got a month to get in shape to pass this next test , no problem doc. “
So we keep waiting. Hoping. Singing along with zac brown tonight . And dancing 💃🏾 🕺🏻 at a Wedding in the meantime.
The worst news that we have been trying to wrap our minds around is that Kota is leaving Emory. Like ...today is his official last day !
He has pulled us through 600 plus days in the Leukemia world and we are grateful for each and every single one .
He and his family have moved to Augusta. He will be head of Bone Marrow Transplant at Augusta Regional.
So he won’t be far and he will continue to care for Mike . He will still get his chemo at Emory and have a doctor here but we will go to Augusta for scans .
This is the plan for now. Not the plan we would have chosen for ourselves. But life is ever changing and nothing stays the same.
So .....we keep trusting the journey.
A friend brought me a book called - Everything happens for a reason and other lies I’ve loved- by Kate Bowler.
She was diagnosed with stage 4 colon cancer at 35. And somehow in some weird way these books provide much hope to me. She said something that I have been trying to put words to since the day Mike called me telling me he was headed to Gwinnett medical center to see an oncologist.
“ The way doctors are delicately picking up and handling the words “stage 4” suggest that I am a spaghetti bowl of cancer. And oddly, this reality filled me with love. Love for my son. Love for my friends and family. Love for my husband, sitting beside me ,squeezing my hand moment before the surgery. “
I called , my mom, my dad, wes and rob. All within minutes on my drive out to meet Mike that day. I was frozen in fear but full of nothing but love. Suddenly nothing else in the world mattered. I had regrets of every thing I ever did or said that may have hurt those I loved. I could think of no way I had ever been wronged or disappointed and only wanted to make sure everyone knew how much I loved them. Especially Mike. We knew deep down he was a Christmas tree of cancer and yet love was the only reality that stood true. That kept me hoping. If only we could all be filled with this kind of love everyday with everyone one cross. I wonder what the world would look like then.
Why does threat of death bring on this kind of love. God’s love. I can’t explain it. It’s only something I have felt. And discovered through the deepest of suffering.
I know there is a God. I have felt it. I have felt the peace that day when Mikes card , trust in the lord with all your heart , fell out of his pocket as he undressed to be weighed on the first day of this journey. I felt the same fear last night as I drove to meet Mike at Emory for the results. And still I felt that same peace yesterday as I cried in the car on the way home after we met with Kota. I don’t understand where the peace comes from in the midst of all the unanswered questions. I don’t understand this journey as I am mad as hell this has happened to him.
It almost seems ridiculous. It is ridiculous. This is unfair. Unfair for Mike and our family to go through this. But it is for the next person too. How can I be so sad and everything still be at peace. I wish I could bottle up the love and peace I feel in my heart and save it forever. The love for mike. For our children. For our family. For our friends. And for Kota. Since we aren’t able to bottle it up we try and share as much as we can with you.
This God , whatever the force or spirit may be , will guide us through all the days ahead.
We keep swimming.