|Storm Approaching (M.A. Reilly Tuscany, 2014)|
On September 8th we learned Rob's lung cancer was either stage 3 or stage 4. On September 11, we packed a portable oxygen tank and had dinner with our doctor and his family--close friends of ours. Rob was still recovering from a 7-hour VATs procedure he had at the end of August. And though Rob would live for almost 6 more months, this dinner would be Rob's last social outing of his life. The health complications and cancer would keep him from most everything. And though he was exhausted by the time we returned home that night, he was joyful at having spent the night doing what he most loved--interacting with others...sharing stories...thinking and loving. The visit was good for both of us. It went a long way to restore our fragile sense of selfhood. We were more than lung cancer could dictate.
On the next Monday, September 14, we were up and out of the house by 5:30 a.m. in order to be at the hospital for the insertion of a power port. It was a quick procedure--one done in anticipation of chemotherapy treatment. As I have written before, the surgeon on that early morning would inset not only the port into the upper right side of Rob's chest, but also HA-MRSA--- hospital acquired staph infection that is resistant to antibiotics. At the end of the next week, instead of having the first chemotherapy treatment, Rob would be transported to the hospital by our local ambulance squad where he would spend 12 hours in an emergency room being diagnosed with staph before being admitted to the hospital. He remained in the hospital through October 6. Once home, I administered IV antibiotics daily and Rob had radiation treatment. He was cleared by an infectious disease doctor for chemo and had his first treatment at the end of October--two days before Halloween.
We thought this was nothing more than a one month delay. But this was not to be. After receiving chemo, Rob developed a massive abscess in his chest. The first staph infection hadn't been treated correctly and with his suppressed immune system, the staph infection grew and grew. The abscess required thoracic surgery, the removal of a rib, and after he was released from the hospital mid November, I administered for another 4 weeks antibiotics, 3 times a day. Rob had chemo treatment in December and was supposed to have it again on December 30th but he was again transported from home to hospital because he could no longer walk. A diagnosis of spinal cord compression required emergency spinal surgery followed by rehabilitation which was interrupted by yet another staph infection which returned Rob to the hospital towards the end of January. In early February he was supposed to receive immunotherapy treatment (Opdivo) but was unable to because of a fever he spiked. After multiple chest x-rays and a CT scan, we learned that the cancer had spread through Rob's body and his illness was no longer treatable.
In the space of a few months, Rob shifted from being an actor to being acted upon; from laughing often, freely, and with great expression to being dulled and confused by massive amounts of narcotics used to relieve pain. Rob enjoyed chatting up the barista, the dry cleaner, the pharmacist--just about anyone. He went from being out and about to being housebound and later bed bound. He shifted from a man who had recently taken up walking in July to one who would no longer be able to stand by the close of December.
It was all so quick. These changes didn't even have time to rock us. They buried us instead. Each time we thought we were out ahead of the staph infections, the lung cancer, the cord compression and we could live a bit we were faced with a new and more deadly complication.
What I could not know then, was that I too was undergoing changes. It was so hard to be cognizant of myself as I was so directed to caring for and about Rob. Fundamental definitions of self I once took for granted were crumbling. Who was I now that the man I had loved for nearly 3 decades was battling cancer, then dying, leaving here, leaving me? When Rob died, a part of me did too.
Some days when I am home alone I sob loudly and shout. Mostly I yell things like, I want you to come back to me, Rob. I want you now. At these times I feel cheated. Abandoned. Lonely. Sad. Bereft. I say out loud, It was not supposed to be like this. Rob was not supposed to leave me. It's like I want a do-over as if Rob's death was some kind of error that needs to be corrected.
Later, after the wave of tears has subsided I turn again to C.S. Lewis's A Grief Observed--a touchstone book, for sure. There he chronicles his range of responses when his wife died. I am stopped by his insight as to why he wants his wife back when he writes, "I want her back as an ingredient in the restoration of my past" (p. 41).
And I nod, knowing the desire for this ingredient all to well. For it is the restoration of my past that I am most seeking. I want what I have had and I want it at a huge cost. Lewis asks, "Could I have wished her anything worse? Having got once through death, to come back and then, at some later date, have all her dying to do over again?" (p. 41).
This makes me pause and recall what Rob went through. He worked for four weeks to die. Four weeks. He worked to first remember he was dying after the terrible shock wore off. He thought he would be getting a new lung cancer treatment--a promising one--and instead he received a diagnosis that his case was now terminal. Four weeks earlier he was told he had at least six months to live o he would not have been able to have the spinal surgery. He worked to accept he his life would end and that he would need to leave Devon and me. He made provisions for us in so many ways. He refused food and suffered through increased pain. He lost touch with this reality and seemed to enter another world populated by people he knew before who had passed. He forgot he could not walk. He refused all fluids. His blood pressure dropped so low it could no longer be read. His oxygen level dropped as well. He was frightened by the quick build up of fluids in his lungs, waking from sleep to gasp. He felt his jaw unhinge, his circulation slow, his breath rattle, until finally there was just the absence of breath and then the absence of him.
Would I wish that for him again just so my past could be restored?
My past with Rob cannot be had again. It is over.
Live brilliantly he told me an hour after we learned his illness was terminal.
I'm trying, Rob. I'm trying.