It has been two months today since my heart surgery. I am recovering well, although not quickly enough to suit me. We will not know until late summer if the procedure was successful, it takes a long time for the heart to heal and scar tissue to form, which will stop those errant signals from creating chaos in the heart rhythm. The surgeon wasn't able to complete the procedure due to an anatomical aberration in my heart. They were able to do about 70% of what they intended to do. So the odds of a successful procedure went from 90% down to 50%. If my aFib triggers were in the area that they ablated, the procedure may be successful. If they weren't, then I may need another ablation later this year. It will be a much less invasive procedure, and hopefully an easier recovery.
It has also been four years ago today that Tom was diagnosed with appendix cancer. I remember every moment of that day. The waiting room, the sunlight, and the shock. He went in for what was anticipated to be a routine appendectomy. After six weeks of doctor's visits, we were led to believe that they really didn't think he had this rare cancer. So we walked into the hospital that day thinking we would get this taken care of, put the scare behind us and get on with our lives. It wasn't to be. The surgeon got in there and realized what he saw was what he had suspected and that a more invasive procedure would be needed. He closed him back up and sent him to recovery. I remember the surgeon calling me out into the elevator lobby and telling me what had happened. I was not able to retain my composure because I knew what it meant. We were about to embark upon a journey we didn't want to be on. The surgeon had one more case, and he and I would tell Tom together. I sat in the waiting room crying my eyes out. I was alone. There was no privacy. The only other person in the waiting room looked at me and said "he's a young healthy strong man". I just stared at him. I had no words and no idea what to think or say. Later the nurse took me back to the recovery room, where they usually don't allow visitors. Tom was awake and his face lit up when he saw me. He wanted to know how it went. I tried to dodge the question, telling him the surgeon would talk to us. He was insistent. He saw that I had been crying. He knew something was wrong and wanted to know. So I had to tell him. I told him that they didn't remove his appendix. I don't remember anything else I said. And he was pissed off! Really angry, cursing away the way only Tom could do. He wanted it done and over with. The surgeon finally came in. After that I had to go to the pharmacy to pick up his pain meds. I had to stand in line, shaking with fear and tears running down my face, to pick up his prescription. Thinking back on it now, what a brutal, cruel thing to make someone go through. Let's give you some devastating news and then send you to stand in line to pick up a prescription. We came home that night, both exhausted and in shock. We had 200 more days of hospital stays, ER visits, chemotherapy visits, procedures. Ups and downs. Hope and despair. Our world would soon become out of control and all we could do was plod through it, holding onto each other desperately. Every single memory of the hospital includes the lack of appropriate facilities to support a family going through such trauma. Many would not even notice it, but as an architect who has spent my career designing spaces to support healing, the irony was not lost on me of having to spend the most difficult times of my life in an old, cramped, outdated facility that in itself made the process more difficult.
I had my surgery in a different hospital in a different town. But that hospital was also old and cramped and outdated. My room looked and felt exactly like the rooms in which Tom had spent so many days and nights. My only meltdown occurred when they transferred me from ICU to Telemetry and they put me in a two-bed room so small I could lay in bed and reach out and touch the person in the next bed. It was hot and with the curtain pulled I couldn't see out the window and had no idea if it were day or night. Anyone walking by could look directly at me laying in bed. I wasn't having it and let them know that this wasn't going to do, that environment mattered and Kaiser's own design standards were for private rooms. The nurse manager calming listened to me and told me they were having a discharge that afternoon and would transfer me. I was grateful that they did. I had a friend purchase boxes of See's candy that I could give to the staff. I didn't want them to think I was an entitled Marinite. Given all of the interruptions I had all day and night, I can't imagine what it would be like if those interruptions were doubled because of a roommate.
The routine and pace of activities each day were the same as those that Tom experienced during his hospitalizations. I knew what to expect. The only difference was that he wasn't there with me. One of the things he taught me by example was how to be gracious while a patient. I certainly wasn't gracious when he was the patient. I was a mama bear, fiercely looking out for and protecting my injured mate. I didn't intend to be a bitch on wheels, but the most important thing was Tom and his care. My job was to advocate for him so he could focus on healing. During my hospital stay, I had to be my own advocate. I had friends that would do that for me if I was unable to do it for myself, but was able to be clear about my needs. And the care I received was excellent.
When Tom was discharged after his first extended hospitalization, he was weak and needed to build his strength. Every evening, around 7 pm, we would take the dog and go on a little stroll. At first it was to the mail box and back. We extended the distance a little at a time. When I was discharged, I also needed to rebuild my strength and give my heart a gentle workout. So in the evening, around 7 pm. I would take the dog and slowly make the same journey. My friend, who was caring for me, walked with us. At first it took all I had to walk 150 feet to the mailbox. It felt surreal. It took me back to those evening of walking with Tom as he recuperated. The sunlight was the same, the temperature was the same, the smell and feel of the breeze was the same. It has now become a nightly ritual, two months later, that I take Zora on a walk. At 7 pm she sits in front of me and stares. And every single night I remember those strolls with Tom. It is one of the parallels.
During Tom's illness he developed orthostatic hypotension--feeling lightheaded and dizzy when he stood up. He was a big strong fellow and he didn't feel strong during those episodes. It was one of the reasons I would walk with him and stay close when he was up. This week I developed a similar problem. It is a part of the recovery process as the medications I must take for another month have greater side effects at their current dosage. It has happened twice this week, the lightheaded and dizzy feelings when I get up. It can be scary. But I look at it as progress, as my body healing. My doctor has prescribed more salt in my diet and a lot of fluid. It is another parallel.
This last day of June is not a day I care for. I am a person who focuses on dates, and experiences. Even when I don't want to, it is how I am wired. As I experience these parallels, I begin to wonder if it is time for me to consider moving. Our home has been a refuge, a place of comfort. It is the place where we lived our lives, the happy times, the bad times, the ups and downs, the place of laughter and love. It is the place where Tom died. It has been a place of security, of grief, of pain, of memories and of renewal. And while it is still deeply held in my heart, I am beginning to feel that it may be possible for me to let it go, or at least move from it. Perhaps it is time to leave the nest and move into my future. I am now in another place of transition. It seems never-ending, the different stages of transition. I'm in a different waiting room. It has been a long journey, which started four years ago today. I do not know what comes next, but I am willing to be open to the possibilities. As my heart heals not only from the surgery, but from the loss of the love of my life, I search for the next right step in my life.
