11/30/21 & 5/21/22

(N.B. This is a portion of a larger story, the first part of which will not be published because of sensitive content. Please email me if you wish to read it.)

Carol died in January, 17 months ago, of ovarian cancer, after a brutal four-year siege. She was courageous and a fighter to the end. It took eight things to bring her down: her cancer, chemotherapy, chemo-based pneumonitis, a superimposed viral pneumonitis, a bacterial pneumonia (pneumocystic carinii pneumonia, recently renamed PJP pneumonia), a fungal pneumonia (diagnosed at the very end), a steroid myopathy which sapped her of all her strength, and a malignant ascites which robbed her of nutrients and sodium. At the end she could not even hold up her cell phone, and could not stay awake long enough to appreciate the photos on the digital picture frame that we brought her in the hospital when, because of Covid, she couldn’t have any visitors.

However, she did accomplish her dying wish, to hold and feed her granddaughter Ava. David and Amanda drove up from Alabama during Covid with Ava to spend the last six weeks with his mom. Carol lived the last two weeks of her life in a hospice house which overlooked the beautiful Cambridge Reservoir, being bathed by the love of her family for ten hours a day, which was all she could tolerate given her level of fatigue.

At the end she wanted to write a letter to Ava, for her to read when she was old enough. She started the letter with one line. “Hi Ava. I wish I could be with you.” That was all she could manage, but she had much more to say. Her experienced nurse Mary Jane suggested that I could finish it for her as an act of love. She is the one who called me, very excited, to tell me that Carol had “two weeks, tops” to survive. Carol held on for three.

We did Carol one better. Jonny and I brought our laptops to her room, and she dictated her letter. When she got too tired to do that, I continued to write a draft of what I thought she would say next, and read it to her. I was almost always right. (After all, we were together for forty years.) We wrote up to when we met, which I have covered in my blog.

After we had been in the hospice house for a week and a half, our social worker Janine informed us that we were about to lose our Medicare benefits, because Carol was “too stable”, and not using their resources. I asked her which resources she was referring to, and she said “iv Dilaudid and Ativan, for example”.

When she left, I took Carol’s hand and said “Don’t be a hero. If your nurse asks you if you’re having pain, say ‘yes’. If she asks you if you are anxious, say ‘yes’. If she asks you if you want Dilaudid, say ‘yes’. Do you understand?” She nodded yes.

At stake was $300 a day for as long as she was there, which we were hoping would be a long time.

She was very peaceful and slept most of the day when someone wasn’t giving her stimulation, like Ava. At one point I asked her if she was giving up. “No” she said, slightly annoyed at the question. “I’m just resting.”

The kids had helped me to buy a new laptop, an Acer with a nice 15-inch screen and a solid-state drive (resistant to shock), which they insisted upon. “I am not going to let you buy a laptop that doesn’t have a solid-state drive” Jonny told me.

So one evening I brought my new laptop and my little Blue Bose Bluetooth speaker in to Carol. The day before we had made the plan to simul-watch “Baby Boom”, our favorite movie, but Carol got caught up in something and couldn’t watch it. I watched it with David and Amanda at home, and for some reason which I couldn’t completely understand they hated it. Oh well, I thought, I wasn’t going to worry about it too much.

So I set up the Bose with the laptop, which proved to be a little tricky. I called the kids at home for help, but then it started working, and sounded quite good.

The movie was quite long, over two hours, and so I thought we could just watch until Carol got too tired, and then I would leave. We had watched it many times before, and knew all of the scenes, so Carol “watched” with her eyes closed and a peaceful, happy smile on her face.

We watched until our favorite scene, when Diane Keaton pulls a nutty and collapses in the snow, and wakes up in the office of Sam Shepard, a doctor who turns out to be a veterinarian. She goes postal on him, screaming “I’m spilling my guts out to a VET??!!” and turns to leave. She whips open the curtain only to find a 300-lb sow laying on its side on the examination table. She screams and runs out of the office.

At that point it was ten o’clock, so I closed my laptop and kissed Carol on the forehead, and said “I’ll see you in the morning, honey.” She answered me only with that angelic peaceful smile.

The next morning we had an appointment with the new palliative care doctor at 10am, but I got up at 630am full of beans. I checked my email and wrote a message to my old psychotherapist Dina, explaining that Carol was dying and asking her if she could see me again. Then I grabbed a box that had about five vacuum bottles for her peritoneal catheter, threw in a few more items, and headed off to the hospice around 830am.

When I got to Carol’s room she was sleeping. “Your hubo is here!” I announced cheerfully, putting the box down on the chair next to her bed. She didn’t stir. I reached down for her wrist, and her skin was unusually warm, even hot to the touch. Usually her skin was cool.

I reached for her face, which was turned slightly away from me. I tried to turn her head. It was dead weight. I felt for her radial pulse, and couldn’t find it. I went to my fanny pack and fished out the new sat probe (oxygen saturation) which I had received from Amazon the day before. Carol didn’t trust my old sat probe, which constantly needed new batteries and required a lot of fiddling before it read. I thought it was accurate enough, but gave in when she told me that she had bought one for Jonny for twenty bucks. I opted for a 45-dollar one which had an onboard pulse display.

I put the probe on her finger. It showed a flat line. She was dead.

I went outside, where Mary Anne was washing her hands and gowning up to come into the room. “She’s dead” I said. “No, she isn’t, I was just in there!” she said. We both went back into the room, and she saw the flatline image on the sat probe. “I’ll say that you pronounced her at 835am” she said, reaching for her clipboard but keeping eye contact with me. As her husband I was not supposed to pronounce her dead, but Mary Anne honored the fact that I was a doctor, and had indeed been the one to find her dead.

I reconstructed Carol’s final hours. Shortly after I had left, her nurse Tracey asked her if she was having any pain. She said “yes”. She asked her if she wanted iv Dilaudid. She said “yes”. Tracey gave her 1 mg, the maximum amount allowed by the doctor’s order (and twice as much as I would have ever given her, unless I was TRYING to overdose her.) She slept for ten hours, and let go of life one or two minutes before I arrived.

Her oncologist Alexi said to me “I find that patients often choose to die when there’s no one around. I think it’s because they don’t want to upset their loved ones.” If Carol had tried to die while I was present, I would have shaken her, held her airway open forcefully to stimulate her to breathe, and done CPR if necessary, disregarding the DNR (Do Not Resuscitate) order which she had signed the previous week. It would have been futile. Even if it prolonged her life for another day, in the long run it would have been meaningless.

So, I reflected, her last words to me were “I’m just resting”. Her very last words, spoken in my absence, were “Yes” and “Yes”, as I had instructed her.

Regarding the large dose of Dilaudid, I realized that the job of the hospice nurse is not to prolong their patient’s life at all costs, but to give them and their family the gift of a peaceful death. Tracey had done that for us.

5/21/22

Yesterday was the six-month anniversary that I am sharing with my new love Sheila, who is upstairs in bed sleeping. I am sitting on the sofa in the living room of her townhouse in Fall River with a heating pad under my butt and sacrum. My back is suffering from a busy week: on Tuesday I played golf with Jonny, who is recovering from Covid, and on Wednesday I played with my friend Jack. Between golf and making love, my lumbar area is in a state of indignant shock.

When I played with Jonny, I was climbing up a bunker and feeling the strain in my legs. I began to curse my permanent neuropathy, but then remembered that it was the result of the ECMO life support that saved my life three and a half years ago. So I reframed it to, every time I feel the stiffness in my legs, I can be grateful to have been granted this “bonus time”, this cherry on the hot fudge sundae of my life.

Last year I was lying in “my office”, the loveseat in my living room on which I spent almost all of the first two years after my arrest, staring at the ceiling and asking God why no one was answering my phone calls, even my two sons, and why he spared my life. What was my purpose? Did I even have one? Around that time my older brother said to me in a phone conversation “Hey, Ed, maybe God spared your life so that you can take care of Dickie!” Dickie is my kid brother who is afflicted with a severe endstage case of schizoaffective disease. When I heard him say that, I got pissed. God didn’t spare me to babysit my hopeless brother Dickie, he spared me so that I could bury and honor my wife Carol. At that time I didn’t know that he would send me Sheila as well…

Sheila is sleeping in the master bedroom which we renovated over the last two months. It turned out beautifully.

I have been granted a new life by God, and, I am convinced, by Carol as well. This morning in the bathroom I imagined that Carol was looking down at me from heaven and saying “Ed, where are you? Who is this that you are in bed with?” but thought again, and heard her say “Good for you, Ed. This is what I wanted for you. Enjoy it and milk it for all it’s worth.”

Last week for the first time I dreamed about seeing Carol. She was young and radiant, standing beside an empty tennis court. Her hair was uncharacteristically straight, like Sheila’s. I went up to speak with her, but she turned and walked away from me.

I didn’t have the sense that she was mad at me, but that she was instead envious of what Sheila and I now have. After we married in 1985, we turned our attention away from each other and onto the job of having kids and building a family. We overcame infertility by Carol undergoing a major pelvic cleanout operation, and we saw David born with a life-threatening meconium aspiration and a friend lose their baby to SIDS. When Jonny was born we dealt with a mysterious ascites which turned out to be due to an iatrogenic hole in her bladder. By the time the kids were out of the house, we were dealing with a litany of medical problems which culminated in my cardiac arrest and Carol’s ovarian cancer and death. So for the last 35 years of our relationship we didn’t have the luxury of being alone together, working on us and growing our love. Instead, our love was forged in the crucible of life’s struggles and hardships. Maybe that’s why at the end it was so strong.

Sheila and I will never have children together. (Not even by adoption, which I half-seriously asked her about last week. I got a hard “no”.) We do have three grandchildren, ages one-and-a-half, ten, and twelve, and are expecting our fourth in six weeks or so. And of course we have Max, our 17 year-old Bichon dog (who is 99 in human years)…

As a result, we have the luxury of working on us, and we are doing that very intensely. We are careening together down a double black diamond ski trail, holding on to each other for dear life. And life is dear to us these days, every day an amazing blessing.

Yesterday I had my biweekly phone call with David, and we talked about the tomatoes that they had planted in their garden. That reminded me of when Carol ordered a small tomato plant through the mail and planted it next to the fence between our backyard and Bev’s. Every day she went out to water it until the prednisone took her strength away and she was too weak to climb up and down the four steps to our deck. I took over the care and feeding of the little plant, and took pictures of it on my phone to show Carol how it was doing. It grew one edible cherry tomato and several smaller ones. In the past we had grown tomatoes and they had metastasized to take over the entire side of our lawn. This time the little plant fought for its survival, much as Carol did for hers. In the end both of them died.

When I got out of Tufts Medical Center after the six weeks that the nursea and doctors there fought for my life, I worried about how long I could expect my coronary stents to hold up. A year? Two? But my doctors didn’t seem worried about that. They were just checking me and checking my numbers, and the future was pleasantly uncertain.

This is the first time in my life that I have been able to use that phrase “pleasantly uncertain.” Uncertainty has usually been the enemy, the thing that I dreaded the most, for example how long was Carol going to live?

But now the only certainty is that I am going to eventually die, as is Sheila and everyone else in my life and on this planet. The only question is, how long is God going to give us? Life is a gift, not a right. Every breath we take is a gift. The only questions are, how many breaths do we have left, and how well are we going to use the precious time that God has given us?

When I asked my younger brother to help pay for Carol’s gravestone, I asked him if he thought putting my name on it was a hypnotic suggestion that I had died too. He said “come on, Ed, who else are you going to spend 40 years of your life with?” I went ahead and did it.

But now, I am with a wonderful woman whom I have known for 15 years. If we are blessed with 25 years together, that will add up to another 40. That’s what I’m shooting for, 25 years. We are celebrating our six-month anniversary. I just want to string another 49 of these suckers together.

Now it’s time to wake Sheila up and go celebrate.

God has given me the blessing of two soulmates in one lifetime. I’m not going to waste it…

As always, friends, thanks for reading.