My sweet, amazing angel. What can I do or say to make this all better? There is nothing left…and it hurts. Everyone who has ever met John will say the same thing, “I wish I could take this away.” I do too. Since the last blog entry, we got the news we never wanted to hear. Let me walk you through the past few days.
Friday evening, John’s mom arrived in town and was put into this whirlwind with us. She is really a strong and amazing mother and I am thankful for her presence this week. She walked right into the mess by getting taken in the hospital hallway by the surgeon who put his larger chest tube in place. He took it upon himself to tell her…rather than the 27 year old man who has been going through all this for the past seven months…that things are a lot worse than they seem and we were not being told the entire truth about his diagnosis and life expectancy. With those few words, he stole the optimism and positivity we had been fighting so hard to keep through this full journey. Saturday and Sunday were spent in a fog with the anxiety of wanting to discuss his options with his oncologist. Soon came Monday and we hurriedly called him to ask of his schedule the following days. He let us know he was to arrive first thing Tuesday morning to look over his chart and discuss treatment options. All the while, John had been draining more, darker, bloodier fluid on top of countless transfusions and xrays to continue tracking his drainage and hemoglobin. Monday did seem to get better and the previously higher blood pressure John was battling, was decreasing hour by hour.
Finally, this morning came. We were woken up by the portable xray team, coming in to do their morning routine of John’s chest and stomach. As I was stumbling in the hallway, still half asleep, I realized….it was Tuesday. Tuesday was the morning we had been waiting for since the dreadful news on Friday. My hair disheveled and my eyes full of morning crust, I made my way back into the hospital room we have now called home for over a week. I plopped down on the couch and could not help but look at my feet and then over to the drainage kit lying beside John’s bed on the floor. I had noticed he was on his fourth kit, each one holding over 2,000 CC’s. The uneasiness and nervousness I felt in that moment was unbearable. Susie walked in the door around 8 that morning, handed me the ritual cup of coffee she stopped to get the two of us and sat down next to me. This wait for the oncologist took me back to the wait we experienced the very first time we sat in the cancer center waiting to hear the results of the first set of scans when John was originally diagnosed. I looked down, realized I was still in my sleeping clothes and proceeded to the bathroom to change into jeans. Just then…I heard the door open. I could not get my pants up fast enough and rushed out the door to find John’s oncologist sitting on the couch. Before I tell you what he said…I want everyone to know, we have been incredibly lucky to have the support of our family and friends, but equally, our amazing doctors and nurses. If we did not have the support and fight our doctors had along the way, we would not have been so optimistic. I sat right next to the oncologist and he began to talk to the room. In this small, cold hospital room sat John, Susie, the Nurse Practitioner from the surgical team and me…all hanging on what he had to say next…“John, treatment is just not an option anymore.” As the words rang through my ears like an ambulance siren, I got up and walked to John’s bedside to hold his hand. The doctor continued to talk about the amount of tumors in his chest, the progression, the quality of life he wanted for John for the remainder of time, how chemotherapy was too much for his low hemoglobin, and how the fluid was coming out pure blood and was preventing further treatment. He was getting transfusions every other day but it was literally coming out the other end of his chest the same way it went in. With those statements, it was like someone ripped my heart out of my chest and stomped on it. It continued when he said, “The tumors were responding but finally outsmarted the treatment and is back with a vengeance.” I squeezed John’s hand and watched him slowly break down. He hung his head and could not believe the news either. We always kept hope that one day he would beat this and now we were told there was no way. It was like a tidal wave…the entire room felt it and we all were sobbing uncontrollably. Hospice was mentioned…pain management…at home care…making John comfortable…and finally, sending him away for yet another surgery this week to put back the at home drainage tube in his chest so we can take him out of the hospital.
Susie and I followed the hospital bed as he was carted down to another floor for this surgery with a new surgeon. We requested a new one after the incident on Friday. It was over in less than an hour and we were met at the door by the surgeon as John was whisked back by on his way to his room. “Everything went as planned and I found another pocket of fluid the previous drain did not access,” he said. The thoughtfulness in his eyes and the way he held my arm showed me how much he really cared for his young patient. I asked if he retrieved a lot from his chest…even with all the draining John had done throughout the week. “Yes,” he nodded, “…a lot more actually.” Where and how was John carrying all this? It boggles my mind. We hurried up the elevators and met John in the room, where he was still coming out of anesthesia. He opened his eyes, saw his mom and me standing before him, and smiled. My angel smiled…then said the funniest thing I have ever heard. “Baby, I dreamed about giant green beans…they were the size of my arm.” We giggled together and it seemed to make every ounce of sadness vanish for a few moments.
After hours of recovery and coming out of the medicines they gave him from surgery….here we are…a mess. We are a freaking mess. These past seven months have been such an uphill battle with the hope of beating this horrendous leach growing inside of him. Our gastro doctor said it best weeks before, “We all want John to prove us wrong. We want him to make us all look like jackasses and beat this thing.” More than anything, we wanted and believed this too. He was going to be that rare case that won…the one who made it in the medical and record books as being the youngest case ever diagnosed with esophageal cancer and on top of all that, beating the bleak prognosis and living years beyond what anyone expected. We wanted this so bad. Today, we realized this was not going to happen. We have all fallen apart several times today and I am sure, as word spread of the results, others did too as if they were right next to us. I cannot blame anyone for feeling this pain because of the love you have for John. I am so lucky and thankful to have this man in my life and I know you all feel the same. We do not know how much time we have left with him, but I am going to be sure to spend every last second I can letting him know how much I love him. So…with that….we are headed back to Indianapolis on Monday after getting things together here in Orlando this week. His beautiful sister will be here on Friday and all four of us (John, myself, Susie and Meg) will fly all together to stay at her house as the cancer continues to run its course. I never thought I would say that…let the cancer run its course. I find myself looking down at my wedding rings, starring at John, or looking at the floor and completely zoning out. I think of all the beautiful memories we have shared and the amazing love we have for each other. It is like I am not even in my own body anymore. Today, a social worker came in the room to check on us and one of the last questions she asked was if we had kids. I told her no….but that we always wanted children. I sobbed and realized this would never happen with John and could not control my tears. One of the many things I wanted to have with this beautiful person is now gone….and I cannot stand it. My world is in shambles and the one person to make it all better, every single time…is leaving. We do have the most amazing support system…we really do…I know that….but selfishly, I only want one person here with me, and that is John. A part of me does not even think this is happening right now. I'm sorry...I know my thoughts are all over the place right now. Please…I beg of all of you…please, send your sweet love, prayers, thoughts, and compassionate words to my husband. This is what we need and this is what I ask of all of you. I just love him so much…