Sunday, January 22, 2017
The war rages on
The battle is over. My body is waking back up after being put to sleep, the pain that followed the violence is subsiding and my wounds are softening and healing. As I get back to my normal diet and activities and return to myself I can now afford the mental energy to reflect back on what has happened here and reach back out to all of you.
I went into surgery on Wednesday in the midst of a heavy storm. The burden of the clouds was hastily released onto the city and the unprepared roadways swelled with the rain water. We played cards to still our nerves as we waited for all the members of my surgical warrior team to make their way through the panicked city and find themselves ready to do battle. At this point all we knew was that the surgeons would place a scope through my navel and look around instead to see the extent of the cancer in my abdomen. If (and this is a very big if) there wasn't extensive disease they would move forward with a surgery to remove some of the tumor for TIL, a cutting edge new therapy available here at MDACC. They had specialists in place for any number of scenarios and planned to remove as much as they could. I was told it could take up to 6 hours. Once everyone had arrived I was dressed for the occasion and tagged on all four limbs then rolled into the room. I smiled up at the nurses as the fluids reached my veins. Then I was asleep.
I've had surgery and medical procedures that involve general anesthesia before and I was always struck by the distinct feeling of waking up in a complete state of disorientation. Coming out of a dreamless state and waiting for my neurons to fire and remind me that I am a person and that I was once alive and that I still am and then the other details find their way to me one by one. This time was different. I had a dream. I don't remember the dream but I remember waking up smiling and fully aware of who I was. The first thing I looked for as I pulled open my heavy eye lids was to grab the image of the clock on the wall as I rolled away. 3:38. Too long to have just been a scope and close up. They did the surgery. I smiled again and let my eyes comfortably close again, sure I could handle any news that might come at this point. I recall a doctor placing a hand on my knee. I opened my eyes to hear him saying "...went very well, you did great..." I had many questions but only the will to nod my head and smile. I kept my eyes mostly closed but didn't attain sleep again, instead contenting myself with attending to the murmurs of the nurses around me and piecing together the snippets of information about me that they shared with one another.
I was in recovery for a few hours before they let my family come back and see me. I remember inquiring about the burning pain in my arm and requesting that someone bend it for me as I couldn't move my limbs of my own accord. The obliging nurses were there and immediately responded to my every need. I was nauseated, as expected. A nurse shoved an alcohol soaked pad under my nose, which I violently rejected (no, worse, worse!). I then noticed and inspected the various painful and sore spots - surveying my battle wounds. When my husband and sister were allowed back they were full of smiles and I finally mustered the strength to ask for details.
According to the surgeons, the scope showed nothing else concerning. They made a long midline incision in my abdomen and found the tumor. It had an impressive network of vessels running to it, cancer loves and needs ample blood supply. There were no large vessels involved so they decided to remove the whole tumor including the vessels that it had taken over. Once a tumor has been attacked with immunotherapy/the immune system it can become somewhat "sticky" and it can be hard to "liberate" from the areas. The team noted some microscopic or suspected microscopic metastatic areas in the sticky parts where the tumor had been so they brought in the radiation oncology team to blast these suspicious areas. A vascular surgeon had also been brought in to help with "liberating" the tumor and to seal off the vessels while my surgeon took the egg-sized mass over to get a look at it. She needed to take some of it for TIL and the remainder for pathology and research. When she cut into it, however, it appeared to be almost entirely necrotic (aka dead!). She said there was 5% or at MOST 10% active tumor left, which should be able to be used for TIL harvest. They would investigate the active areas to see if the immunotherapy had stopped working in those areas or simply hadn't had the time to work. The jury is still out with that one, but overall - what a wonderful surprise! At the last scan it appeared to be growing so we thought it was possible the nivolumab wasn't working at all.
Recovery has been seemingly long and arduous although the distance covered since Wednesday has been impressive. Mostly, the issue has been pain control. We did the usual song and dance of "narcotics don't work for me and make my stomach hurt" "really? just try this one" "nope, not working and sick" "okay how about this one" "nope, same awful thing." And on an on until finally my bleeding risk dropped and I was able to take some ibuprofen. Now I'm up and hobbling around with the help of my belly wrap. I have been freed from the IV pole and I'm now just waiting for my blood counts to return to normal and then I will be released to the care of my family back in Tennessee.
My next planned treatment has been cancelled to give me more time to recover, physically. We need to keep on top of my immune system because even though all visible cancer has been removed or blasted I still have mucosal melanoma cells in my body and blood stream. The good news is that I can likely receive much of my next treatment at home in Tennessee. From here it will be scan, wait, scan, wait, scan, wait...
The battle has been won! And now- on to win the war.