On April 1st, 2009, John had surgery at NIH/NCI (National Institute of Health/National Cancer Institute). We were cautiously optimistic going into the surgery. NIIH had the best success rates with stage IV melanoma and could boast of quite a few people with complete remission success for stage IV. Given our circumstances, we were in the best hands possible.
As I nervously waited watching the clock, I wasn’t surprised when I saw the surgeon just a few minutes before. But my heart dropped when he said, I guess you noticed I’m here sooner. He had cautioned us that if he found anything that would prevent him from doing the tumor harvest that the surgery would be significantly shorter.
He pulled my father and I into a smaller room… private rooms are never a good sign.
He then explained that John had seed tumors in his small intestine and it prohibited him from proceeding with the surgery. He described them as little tiny tumors and said the number was impossible to count… there could be 10 or 20 or even hundreds of them… and they weren’t removable. The surgeon did however say that it wasn’t the end of the world… I knew it was a significant roadblock, but he suggested that there were treatment options available… it wasn’t a death sentence. If we could get the seed tumors under control then John could return to NIH and re-enter the program.
I think at that moment is when the “new” Mary was born. The one who stood up for her husband and fought for him with everything possible. The new Mary did even more of research and made countless phone calls looking for options. The new Mary was going to do everything humanly possible to help John beat his cancer. The new Mary felt that she was the absolute best person to care for her beloved husband and tirelessly devoted herself to his care and well being and always showed him the respect and dignity that he deserved and loved him unconditionally. She still called him “Sexy” even when he was pale and weak… and she still meant it. She loved John with all of her heart and everything she did was for him. The new Mary didn’t take “No!” for an answer. The new Mary believed in miracles and felt that if anybody deserved a miracle it was John. The new Mary was ready to fight for her husband till the death (or till John said, stop) but didn’t want to believe she’d have to worry about that. The new Mary was going to make sure that her husband was treated the way that he deserved to be treated. She had absolutely no problem telling doctors and nurses what needed to happen for John to be as comfortable as possible. Somehow she found a knack for building rapport and laying out her expectations but being polite and firm which usually resulted in John getting superior care from his nurses. The new Mary had little tolerance for stupid stuff, people who don’t do their jobs, and people who complain about stupid things. She used to be very empathetic and now she is very selectively empathetic… hearing of others dealing with serious illness, cancer, hospice, and death really strike a cord. The new Mary gained some sort of superhuman strength in front of John and did her best to keep her tears to herself… crying in the shower, the car, out of sight.
The meek, quiet, roll over sort of Mary was gone.
Some days, I wonder if the “new” Mary is a better person or not. I’m left with no tolerance for many things. I have a sharper tongue and have to remind myself to bite my tongue often. People don’t mean harm… most mean well… but sometimes it is hard to understand. Comments like, “will anybody else be joining you?” have a sharp sting. “I bet he likes to play with his daddy!” “When are you going to have another? You can’t have just one kid or they’ll grow up spoiled…” They’re harmless small talk… human nature… and oh, so painful…
And DO NOT tell me about your marital unhappiness… I’d give ANYTHING to have our worst day together back (quite frankly we had very few bad days, anyway). Enjoy and appreciate the time you have together. Love your spouse and your children like there may not be a tomorrow. And if you’re not happy get the F$#) out, life is too short for bad relationships. Usually, I have the decency to refrain from thinking out loud. If I said what I thought, I’d have very few friends.
But, back to a year ago. I listened to the surgeon. Once he left, I sprang to option and called Dr. Sharfman’s office (he was most highly recommended) explained the situation, the urgency for an appointment, and the severity of the situation. Within a few hours I was talking with Dr. Sharfman and plan B was unfolding. I had taken the initiate to be decisive. Me… yes, me… the person who can’t make up my mind about what I want for dinner or which $10 feed tub I want…
I had asked the surgeon if John knew. He said, “No.” He would come back later and talk to us after John had recovered from the anesthesia. He told me that I could tell him if I wanted to. I didn’t want John to hear the news alone.
A little later that nurse came and said that John was asking for me. She seemed a little flustered and in a hurry… not the typical, “You can come back now, Mrs. Smith.”
I soon saw why and my heart instantly broke. John was crying. Not just crying sobbing. The surgeon had told him and he had interpreted the news that he was dying and there was nothing that could be done.
That may be the first time that I had to be the rock. John had always been the rock. Quite frankly, I have no desire to be the rock. I had to stay strong and comfort him. I told him that we already had an appointment with Dr. Sharfman in a few days. I said that there were still options and it wasn’t a death sentence.
I selfishly want to have my own rock back… I don’t want to make decisions alone, I don’t want to be alone… and dammit… I don’t want to be the driver… I want to be the passenger… John and I had a very partnership type relationship, but as in a dance, I let him lead and I wanted him to drive… I want my John back… I can’t have that.
Shortly afterward, John was doing everything he could to quickly recover to get out of the hospital and on to plan B. A year ago, John was still very strong… you wouldn’t have known he was sick… he had a slight limp and pain in his hip, but that was his only noticeable problems. What a difference a year makes…
Love you, John. Miss you always…