Joan gently explained to me on the phone what was happening.

“After talking to the doctors this morning, they told me the chemo isn’t working….there isn’t anything else they can do…. “

“Are you still there?” she asks.

“Yes, I am listening.” I didn’t want to speak and have my voice crack. She didn’t need to feel my anguish over her own. She continued gently. 

“I know you had a hard time when Mom died, but if you could, I’d like you to come be with me when I transition, but if you can’t, I understand.” 

Transition? Is that what she is calling this? I silently respond.

“So, I’m going to die this weekend. Do you think you can come?”

Geez. 

Joan had endured so much. The doctors had removed her thyroid 30 years ago. She survived and thrived. She finished college with a teaching degree. She built up her painting business. She learned how to do sound for a rock band. Say what? She fell in love. She fell out of love. Fell in love again. Moved to Oregon. Bought a house. Remodeled it. Fell out of love. Found and purchased a new house. She began working for a hardware company managing their paint department. She fell in love again, and together, they built a life with their dogs. 

After the thyroid issue, she attended yearly check-ups, ate healthier, and exercised regularly. A few years ago, she told me, “I don’t know what’s wrong, but my food is getting caught in my throat. I can feel it sitting there. I try to push it down with my fingers.” She found it increasingly difficult to swallow. She increased her liquids and chewed her food more. The problem remained. I don’t remember if it was during her yearly check-up or on a specific appointment, and it doesn’t matter. The doctors did tests and biopsies and identified the problem, cancer. The operation was scheduled to remove her esophagus and use part of her stomach to build a new esophagus, enabling her to eat—piece of cake. 

During surgery, the biopsies came back that her stomach was also cancerous. When she woke, she was sans an esophagus and stomach. She was told she would not be able to eat again, like ever. She would need to feed herself through a stomach tube. She could drink, but all liquids would be deposited in a reusable drain bag below her collarbone. Reusable, as in draining multiple times a day. She had to remain in an inclined position at all times. If she didn’t, she could suffocate. She could not swim or have her tubes exposed to any water. So, no water activities. She was how to protect the tubes during a shower.

After using up vacation days, her partner returned to work. Joan called and asked if my sister and I could take turns and help her for a little while. Carrie and I split up the convalescent weeks to help her through the first month of rehabilitation. We administered meds through her feeding tube. Switched out her liquid food bag. Drained the saliva sack. Fed her dogs. Became an expert with the pooper scooper. We sanitized the house to avoid any contamination. We watched movies, shows and the 49ers. She loved the home improvement shows the best and also, strangely, the Hallmark channel. And we talked. 

“If I had known that this was a possibility, this outcome, I would have told them to just sew me back up and let me run the course. I don’t want to live like this.” This scenario was real. It made me wonder, what would I want? I believe I know, but one never really does KNOW until you are lying in that bed. 

It should be about personal choice.

It was hard to watch her adjust to this new life. She was always so… capable. And now she wasn’t. It was hard for some really weird reasons too. Logistically, it was awkward. I still had to eat and drink. But, damn, if I was going to do that in front of my sister, who could not. I waited until she was sleeping or resting, and I would quickly make a sandwich, gobbling it down. Or when I ran to the pharmacy to pick up meds, I drove through a drive-through. I would take a morning walk and grab an unhealthy snack at the corner store. 

At her first check-up post-surgery, her doctor gave her great news. She was told if she remained cancer free for a year, there was a chance they could take her small intestines and build her an esophagus. This would allow her to eat in tiny portions, and she would have to massage her throat manually. This would help move the food down to be digested in whatever intestines she still had. She now had a goal. And if Joan was anything, she was stubbornly determined and goal-oriented.

When I returned home, we facetimed, sometimes daily. “I went for a walk today. It was really cold, but I made it halfway down the street.” Within short order, she was walking a mile. She also had exercise equipment in her garage. A treadmill, a stationary bike, and some weights. She utilized them religiously. Slowly she built up her strength. It was difficult to gain weight, but she gained a few necessary pounds by increasing the amount of food pumped into her system. 

She marked off the months to her yearly goal. And during that time, she encountered numerous obstacles. The biggest one was her feeding tube which kept getting clogged. She had to have it replaced several times. She became great friends with the nurses. “They appreciate my sarcasm.” she proudly said.

“I have an appointment next week. It’s almost been a year. They will do a body scan to see if there is any issues,” she explained through face time. She looked good. Healthier. Happy. Hopeful.

She went to the appointment, and after the test results, they confirmed that she qualified for the surgery. She was cancer free! She met her surgical teams, who told her what would occur during and after. She wanted the procedure done before the new year. Insurance smart. She also was clear about unforeseen consequences. 

“I want them to understand if they find anything this time, they are to just sew me up and let me go. “

Choices.

The surgery went well. She now had an esophagus of sorts. The bags were removed. She still had to sit and/or lay elevated. A small inconvenience. She was once again rehabilitating. Month after month, the doctors were encouraged by her progress. She was back on the lakes canoeing and paddle boarding. She was enjoying the taste and feel of food again. We could all go to restaurants together, and she would order appropriate food for herself. 

Her partner retired. They found a property and a small house in the mountains, nearer the lakes and ocean she loved. Joan was in her element as she planned their future. “I think we might get a motor home and start road-tripping. The dogs can come. I can’t wait to travel again.”

She began to remodel their home. She cleaned and removed all the cat hair from the previous tenants. Major task! A new roof was needed. New exterior paint was applied. A property fence was installed. And a dog yard was created. She loved being in the mountains. She also loved being independent. In August, she took a solo road trip to see family and friends and attend her 50-year class reunion. 

When she returned from her trip, she felt something wasn’t right. Her chest felt heavy and congested. She tried to make an appointment, but they couldn’t fit her in for three months. She opted to go to the emergency room. It was there that she called me. “I have stage four lung cancer. I am going to start chemo as soon as I gain some weight and they can fit me in.”

Biweekly draining of her lung and Chemo started. She had a couple hospital stays. She was losing weight. If she could not gain or at least maintain her weight. They couldn’t continue with the chemo. She drank more calories. She did less work. She became weaker and weaker. Her bodily functions were shutting down. During our daily FaceTime calls, I could see her sallow skin and her discouragement. She asked Carrie to come up for a week to give her partner a break. When Carrie got home, she called me. “Pam, It’s not good. I don’t think she can make it to spring.” 

The call came from Joan on January 29th. “They gave me a blood transfusion today. They drained my lung again. One doctor thought he might be able to try something, but then he met with the other Dr.s. They came in to tell me there wasn’t anything more they could do for me. So no more Chemo. I’m going on hospice. I’m going home. I’m going to die this weekend. I’d like you to come be with me when I transition, but if you can’t, I understand.”

On Wednesday, three days later, my husband drove me to the airport. I clung to the armrest. My breathing was labored, heavy, and quick. Tears floated on the brim. I bit inside my lip until it bled. The taste of rust slithered down my throat. “I don’t want to do this.” My husband reached for my hand. No, don’t touch, my eyes screamed. I will fall apart if anyone touches me. And so the invisible protective shield was set firmly in place. I will do this.

Carrie, my dad, and I met at the airport in Oregon. The sun set as we began the hour and a half drive to Joan’s house. It is a rural community in a pine forest. The trees cast shadows from passing headlights. It got darker as we traveled this road. Carrie drove. My father was in the front seat, and I was in the back. The conversation was strained and forced. Everything felt so off, so alien, so wrong. Because it was.

We drove straight to Joan’s house. We walked in the back door and found her in the front room, laying in a hospice bed. As my father approached his eldest daughter, I reached out to Joan’s partner. She was beyond distraught. She was inconsolable, clingy, and frankly, inebriated. I tried to empathize. “It is so hard to witness this and not be able to do anything. It’s almost harder. They are going through it and have to accept it. The rest of us just feel like we still have choices, but we don’t.” She clung to me and said, “Yes! I just don’t know what to do! No one knows what I am going through!” She fell into my arms. I led her to a chair. I had not anticipated this. I was not prepared to deal with this. I left her there wading in grief and went to greet my dying sister. She pulled me close, “Thank you for coming. It means so much to me.”

Nope, nope, nope. The unwritten rule is not to touch me. If you touch me, I will fall apart. You know this about me. Yes, she knows this about me. So she keeps holding my hand and making me look in her eyes. Wow, the teasing continues to the last breath. Good to know.

I can do this.

Carrie’s decision was that our visit be brief. She explained that Joan would have plenty of visitors, and we needed to minimize the number to a few at a time. The decision was made that I was to take my dad to the hotel as soon as possible. Joan’s friends, Amy and Marlies, and nephew, Cliff, would arrive later in the evening. Carrie decided to sleep there, nurse Joan, track meds, and monitor her condition. She would keep me posted.

The next morning, I drove Dad back to Joan’s house. We limited each interaction. Sometimes she wanted to visit, and sometimes she wanted to sleep and sometimes we didn’t know what she wanted. Cliff and my Dad did a food run. They returned with much appreciated sandwiches.

Hospice came for another visit. “I’m ready to go.” she tells the nurse. The nurse looks at her and then looks at us. “You heard her. You can increase her morphine. If she wants a drink or a joint, let her have it. She should have whatever she wants.”

The law forbids euthanasia. So, no, Joan didn’t get to have whatever she wanted, far from it. If Joan had asked for “help,” she would have had to get governmental permission and assistance from a medical provider. That would take time, paperwork, and a doctor. Joan lacked the energy, time, paperwork, and doctor to comply with government oversight.

So much for choices.

None of us were prepared for what that meant. 

It was time for Dad to say good-bye. “Joanie, I am so proud of you.” He choked the rehearsed words out. Kissed her good-bye and I drove him back to the hotel.

I took my father to the airport early Friday morning, pre-sunrise. “It isn’t right that she goes before me. It just isn’t right.” he cried as I drove in the dark. I made sure he got on his flight and then I drove back watching the gradient of daylight filter the sky. I stopped at a store and picked up snacks for the day. Then I went to the house. Joan was awake. Carrie was awake. Kathy was not. Cliff had left mid-morning. I probably passed his rental car on the road to the airport.

Now there were five of us and Joan. Kathy, Carrie, Amy, Marlies, and me. Joan wanted to sit up and dangle her feet over the bed. We all leaned in and gently guided her to the edge of the bed. Her feet and legs were so very thin. “Thanks. That is all I wanted.” We laid her back down. Adjusted her pillows and held her hands. Amy, Marlies and I left for the hotel late that night.

She took every opportunity to talk with us. To connect with us. To say good-bye to all of us. She expressed her love for all of us. We played her favorite songs. We shared memories. Some of us danced to her favorite Pink songs. She let chocolate Reece’s melt in her mouth and slide down her swelling throat. “Yum, that tastes good.” We received calls from lifelong friends and family. The day’s didn’t seem long. They seemed meaningful. At night we reluctantly said good-night and headed back to the hotel.

A few hours later, Carrie called us and said she thought Joan had started the death rattle. We drove back to the house. Joan was finally resting peacefully. We went back to the hotel for a few hours. I worked on a video of her nieces and nephews who wanted to say goodbye. I didn’t realize it was mid-morning until Carrie called. “When are you coming back? Joan is awake and wants a mushroom and olive pizza.”

Got it. I quickly downloaded the video to a flash drive, and headed to the store. I went to every store in this one light town, and none had a mushroom and olive pizza. I found a pizza joint and ordered one. It was the worst pizza ever! “Where did you get this pizza?” Kathy asked. I told her, and she said, “I know never to go there again.” Joan chewed it up and spit it out. And not because of its nasty taste, but because she could not eat anything. The large growth in her neck had expanded so big she couldn’t swallow. She could chew, and then she would have to spit it out. She was okay with that. She just wanted to taste something. She hadn’t eaten for days.

She was now on a heavier dose of morphine and some kind of anti-anxiety drug. She talked about where she was going to transition. “Soon, I will be on a beach with warm blue water, and a beautiful sunset, and my dogs will be there to greet me. That is where I will be.” And she smiled. 

The saliva would build up every few minutes, with the growth blocking her throat. We could hear the gurgling noises because she couldn’t swallow anymore. She was slowly drowning. She would reach out and yell, “Help me! Please help me! Help me!” Two of us would take an arm. The others grabbed her hands and together we gently pulled her to sitting position. We would rub and pat her back. “Spit it out Joanie, You can do it!” But she couldn’t. She had no strength or muscle to do so. Her big brown eyes bore into mine, quietly beseeching me to do something. Somehow the episode would pass until a few minutes later she would reach out and yell again. Over and over, we tried to help her. It was the longest, darkest day of our lives.

I called hospice. “There has to be something we can do! She is drowning, and it is terrifying her.” Their reply? “We can bring a pump tomorrow.” Tomorrow? Seriously? 

“Let’s all hold hands and touch her. We can all send silent thoughts to her together. Does that sound weird?” I asked. “No! I’m willing to try anything to help her,” Carrie responded. And the others agreed. We gathered around her bed. Each of us holding hands and holding her. Silently, we sent her good thoughts, good memories, and we sent our love. We told her it was time. She led a good life and now it was time to be on her way. She didn’t need our permission to go, but we gave it anyway. But she stayed. “I don’t think this is working,” I said. Carrie replied, “It is! Look at her face. She is relaxing more.” We all wanted to believe that and so we did.

Her breathing became steady. She no longer opened her eyes. She no longer cried out. She no longer reached for us. She slept, and every hour, she became smaller and smaller, skin, bones and breath. We diligently gave her morphine and anti-anxiety meds. We massaged her cheeks to help the meds absorb into her system. Her skin was soft and pliable. We dozed on and off. It was a restless endless night when finally light began to filter through the windows.

Sunday morning, Joan was still here. Her breathing was steady but shallow. The M&M’s, cookies, muffins and such from the last two days were almost gone. I ordered food online. I drove the 12 miles to pick it up. It never occurred to me that she might transition while I was gone. And she didn’t.

The hospice nurse arrived. She walked in with the pump. She looked at Joan and said, “It’s just a few minutes now.” We didn’t really believe her. She started to visit with Carrie and Kathy. I sat across the room and watched Joan go away. I whispered, “She’s gone. She’s gone.” No one understood. They thought I meant the nurse was gone. “No, she’s right there,” they pointed to the nurse.

“No, she’s gone. Joan’s gone.”

And she was. 

Gone to frolic in the waves with her dogs on her warm, sunny , sandy beach, free at last.

That was her choice. 

I went for a walk on the snow covered roads wanting to talk, to touch, to feel heard, but I was alone in the cold. It began to hit me. She was a constant in my life. Someone I knew I could depend on. And now she is gone. How is that possible? I could feel the void in my world.

It was real. It still is.