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When Ron was first diagnosed with terminal cancer he asked me, “what if I choose to do nothing?” The doctors in Singapore told him he had 4-6 months to live and that the final cause of death would likely be starvation. Sitting on our bed in Jakarta, I told him I would support any decision that he made but that we had to get home and find out what the oncologists said. They had not yet identified the spots in his lungs and we didn’t know what, if any, his options were. The urgent thing at the time was to get him home and treated for the severe jaundice he had and to prevent his body from going septic. I said I would support his decision but I don’t know if I meant it fully or if I even understood what that meant. The World Bank medical staff called me in Jakarta to make sure I understood that all that could be done for Ron was to slow the disease down. Everyone seemed to feel it was very important that I knew that the cancer was terminal. They believed what the doctors in Singapore believed which was that the cancer had metastasized in his lungs, lights on PET scan or none, even with no biopsy.
After that long month of racing around to various doctors, which doctor should we choose, what course of treatment, maybe it isn’t cancer but an IPMN? Maybe it is cancer with an IPMN? Each doctor who saw the lung scans said, “that just doesn’t look like cancer”. Can we do Whipple surgery? We met with the doctor who has done more Whipple surgeries than any other doctor in the world. Part of that is because the dude was OLD. We had concerns that he might not make through the surgery without a nap. He was condescending and harsh but in the end as unpleasant as he was to deal with, everything he told us was correct. No blowing smoke up our asses….to put it crudely. The surgeon we chose to do the Whipple (not old dude) cried when he showed us the final biopsy results that confirmed that Ron’s lungs were filled with cancerous tumors, not a weird internationally found infection like we were all hoping for. That took survival off the table where it has perched so carefully and delicately.
During this time we were also deciding where should we live until we got our house back? Which hotel, which short-term apartment, rent furniture, borrow stuff, what to do with our completely uprooted, chaotic lives?
While the doctor cried and gave Ron his death sentence, Ron never did. He even thanked the doctor very graciously for his time and expertise and clear explanation of what was going on. Ron comforted him and said, he knew how hard it must be to give patients this kind of news. I put my head between my knees to make the room stop wobbling and to make sure I didn’t throw up. I looked around the room for a trash can and didn’t see one. No way was I going to puke on the floor. I couldn’t even look at the doctor again. I just wanted him to disappear. I was in such a disembodied shock I couldn’t drive home and Ron had to drive. He didn’t feel that bad physically at that moment.
When we got back to the apartment where we settled for two months, I experienced a shut-down of my body. I had this overwhelming need to sleep and I couldn’t fight the urge. I slept for a while. We had to tell our families.
So back to “what if?” What if Ron chose to do nothing? Would he have suffered less? He likely would have died sooner but as he said, he was going to die anyway. I so desperately wanted him to live as long as possible, to have him with me, with us. I wanted to believe as his world shrunk to the infusion center, oncologist’s office and our house, that just being with us would be enough for him to want to live—in spite of the pain and Ron’s rapidly decreasing ability to do anything that he enjoyed. I didn’t truly support the decision to do nothing and the oncologists gave us various options and sounded so optimistic. Ron chose a course of treatment that surprised the oncologist because it was less aggressive than what most men of Ron’s age, in the doctor’s experience, would have chosen. Ron made it clear that he wanted quality of life over quantity. And yet, what if I supported him at the beginning better? What if we started out with palliative care only? Chemo can be palliative. For Ron it may have prolonged his life but it did not give him quality. He suffered so much and every procedure that was supposed to be a piece of cake, that was supposed to be painless or uncomplicated, never was any of those things. At one point he asked me in anger and frustration if I (and other family members) just wanted him to subject himself to any and all procedures. Now I look back and think, hindsight is for shit. If I had loved him selflessly would I have been able to give him the chance to choose to do nothing? Did I love him enough? Did I put his needs first or my own? Are people really capable of unselfish love? Even now, I just want him back so badly I could scream until I bled. (Do you know there is no place I can scream. There is no place to go where no one would hear me.)
We talked over each decision and chose together. Ron was too strong, too smart and independent, and often stubborn a person to be pushed and manipulated. We had the enormous love and serious support from all the Kim family doctors—and by that I mean family members who are doctors and were deeply involved in helping us understand what the hell was going on and what our options were. Even now I say “our” options only it wasn’t my option, it was Ron’s. I never wanted him to be alone or feel alone and I always said “we”. Now I can see how much I didn’t understand about what he went though, the constant discomfort, pain, nausea, fatigue, and diminishing clarity. I don’t think that I pushed him or controlled him much. I did sometimes though. I managed his care and as he weakened I took over more and more. I made the appointments, talked to the docs and nurses, explained the medicines to him and told him what to take and when. I hooked him up to the TPN and then the PCA. I really tried to give him space to decide what he wanted for himself but I also told him over and over that I didn’t want to lose him and I cried so much.
During the first two weeks that we were back in the states I got the best advice I received during the entire 8 months. Ronit, a counselor from the World Bank, called me a few times to see if how she could help us. I remember talking to her in the hallway of the second hotel and saying to her that I didn’t know how to act in front of Ron. We had only been back in the states for a little over a week. Was it okay to cry? Could I show my fear and weakness when he needed strength and confidence? Did I even know what he needed or how he needed me to be for him. This is what Ronit told me: “Ask him”. Oh. Right. I hadn’t thought of that. Seriously, I hadn’t. She also told me that what he needs or wants might change so to ask him often and then, as best as I could, to respect his desires.
During his illness, Ron’s choices sometimes were baffling. He resisted pain medication for so long and it was awful and scary for me and the girls. He would sit at the kitchen table rocking back and forth and I would get so uncomfortable watching him, I would get angry at him. He moaned in his sleep and kept me awake. I couldn’t understand why he didn’t want to take the meds and why he was putting us through such a rotten time. After things got worse over time and the doctor and nurses and all of us wanted him to start controlling his pain and talked to him about it over and over, he finally did. I am writing this because I didn’t understand why he wouldn’t take pain meds and sometimes it seemed like he wasn’t fighting enough. Maybe he was trying to retain a modicum of control. What I realize now and want everyone who has ever spent even 3 seconds in his presence to know with every ounce of their being is that Ron fought like HELL. The chemo, otherwise known as poison in the form of hope, the procedures, the meds to counter the chemo, the pain, the endless doctor visits and consultations for additional treatments, and all the other physical indignities. He put up with all that shit and complained so little. He did it because he loved me, the girls, and our families. He did it, even though he knew he was going to die. Every day that he got up and took handfuls of pills and every time he sat in that chemo chair and allowed them to inject him with poison, he was fighting. Every time he forced down only two bites of food when I wanted him to eat more, he was fighting. Every time he let me hook him up to the TPN, he was fighting. He put me and the girls first and yes, he wanted to live for himself but he did all those things for us.
So, what if? Could I have helped Ron suffer less? Could we/he have made better choices? Maybe what feels like selfishness or self-absorption continues in that kind of thinking. Do I really believe I had any control over the cancer? Any control over the pre-determined outcome . There are no answers to this and the what ifs are melting away my insides. People say, you can’t think that way, don’t think that way. But, oops, too late, I already did.