By Kim Ringen
Since my last post not much has changed on the diagnostic front. The large wedge resection did reveal enough testable cancer tissue, however no new known molecular drivers for the cancer were identified. Key word is “known” … yet! Even though the driver of my renegade cancer has yet to be discovered I am still very pleased I underwent the tissue resection. What is still pending in the tissue assessment arena is what type of tumor antigens cloak the lymphangitic disease that is causing my gasping breaths. These tests may lead to entering into the antibody-drug conjugate clinical trials. The other trials I can consider are immunotherapy based. The immunotherapy option can be a risky option for me given my current state. One of the side effects associated with immunotherapy is pneumonitis (severe inflammation of the lungs). If I were to have this rare side effect – it would likely be fatal for me given that my lungs are so severely inflamed from the lymphangitic carcinomatosis. This being the case the benefit must out weigh the risk greatly. That is why immunotherapy will be a 2nd option OR if some of the tumor tissue assessment reveals that I may strongly benefit from immumotherapy we will consider it sooner.
I was “holding steady” for the last 4 weeks on crizotinib (Xalkori) alone….these last 2 weeks I have taken a steady spin downward…the last 7 days have been my toughest yet. I can no longer walk without feeling as if I am suffocating while dragging an oxygen tank. Davin has been my wheelchair chaperone as I have spent most days in and out of doctor appointments. I am under palliative care utilizing morphine, fentanyl patches and mild anti-anxiety medications to control the pain and panic one feels as dyspnea (trouble breathing) rattles my body… Through all of this I remain hopeful for the next treatment options… I just have to have my body make it to those options…
I am happy to report that Davin and I were the 1st place winners of the Team Draft Lung Cancer Super Bowl Challenge. We cannot express how fortunate we feel that our friends and family have made this extraordinary opportunity a reality that we are literally packing for! Though we have won the competition – the fundraiser remains open to support Lung Cancer research and Tackle Lung Cancer!
The only times I have left the house were a handful of eating outings and last weeks Bronco Win…We were very fortunate to have wheelchair accessible seats as I can no longer conquer the stairs that I did just 2 weeks prior. I love being at the game and being in the stands is so uplifting… It may have been a tough win, but it’s a win and … just like my current fight, not all wins are easy and pretty! As fan I will take it! We will be attending this week’s game thanks to Chris Draft foundation!
I have been trying my hardest to stay strong by doing home care physical therapy and all the recommended breathing treatments. My body is weaker than my mind and drive are at this moment. Davin has shared with me that it is difficult to witness my fight during these 20 minute very light workouts, not because he is not proud of me, but that it flashes himself back to the cheering sideline at many races he watched me complete past mile 13. He sees my inner fight just as he did in the years prior yet also sees my greatest struggle. No matter how much I fight, I am weakened far beyond my control. Far beyond his control. No amount of positive thoughts can change this situation. It is what it is and accepting that takes strength. Even though these are honest words…please know I choose life…not death.
I have pushed the “panic button” … meaning I will go back to the old chemotherapy, Docetaxel (Taxotere) and oral steroids while I am STILL awaiting clearer clinical trial options. Even though this drug did not greatly kill the cancer in the past, it may decrease the tumor burden that will allow me to successfully make it to the Super Bowl trip and return home to start yet another crizotinib and chemotherapy wash out period to sign up for the frontline again as I enter my 4th clinical trial 2 years.