David and I deeply appreciate that so many of you were able to make it to Helena’s memorial service last night. The event was everything we had wished for, and we hope it was the same for you.

I know that Helena would have been delighted at the stories which were shared, and especially that there was so much laughter.

Special thanks to Alex Elder who suggested the “circle” format, to John Marshall for generously providing the delicious food, and to Joan Goh for…well everything. This could not have happened without you.

If any of you have additional memories which you’d like shared with Helena’s parents please let me know.

In gratitude,

Brett

My name is Brett Trent, I am Helena’s ex-husband.

It is my sad duty to report that Helena passed away in the early morning hours today. Although she fought hard to the very end, she did not suffer, and was never alone.

I have written that 62 times today, and I still don’t believe it. I sit here, now, at this moment in her room, looking at her empty bed and I still don’t believe it. How can you believe something that cannot be? How can the world exist without Helena Lin Trent? And yet there it is.

What to do? Good question. I wish I had a good answer.

One thing I know about Helena is that she hated to leave things undone. She loathed the loose end, the unchecked box, the commitment unfulfilled. That I can do something about.

I gather that she started this blog as a way of sharing her journey with others in the hopes of helping them. Full disclosure, I didn’t know this blog even existed for the longest time, and when I found out I didn’t read it. Helena and I were good about keeping parts of our lives together and other parts separate – since I was living a lot of what she wrote about I didn’t think I needed to be reading it. Today I visited the site for the very first time, got through half a paragraph about “new toys” and broke down crying for ten minutes.

So maybe I’ll save that reading for later.

But. Since she went to all this trouble, the least I can do is finish the story. This will not be easy to read, but it is necessary to write.

Many friends have commented today that Helena seemed fine the last time they spoke with her, this was my experience as well. Through last week she was tired, on oxygen full-time, but as restless as ever to get things done, to make things happen. We knew that we only had a week or two or three to get our ducks in a row, so we were talking through that here & there, making plans for discussions we needed to have this week or next.

On Saturday, her last fully-functional day, she went about living her life. We took the cats to the vet for her and she was delighted that it was without incident (because there have been incidents…) She read texts and e-mails, often laughing or smiling at what friends had sent. The weather was fine so she pulled a chair out onto the porch to take in the sun and do a set of tai-chi while sitting. As always, that energized her. She watched a few episodes of “This is Us”, excited to get going through the most recent season.

Helena’s favorite way to say “I love you” was to cook for us. She wanted to make us dinner, pesto pasta, but was a little tired, so she sat in the kitchen talking us through the recipe (a little more olive oil, no not all at once, there’s still a piece of skin on that garlic). It was delicious, one of the best batches she ever made.

While we ate we watched a movie. We didn’t much care for the film, but we did it as a family like always, clustered within 10 feet of each other.

Goodnight, goodnight, see you in the morning, sleep well.

Around 2:00 in the morning I heard her coughing, an all too common sound, and went downstairs to see if I could help. She said that she was having real trouble breathing and would I call the hospice hotline to get their guidance on what medicines might work.

A big shout-out here to UPMC Hospice, they were truly wonderful.

We got her comfortable quickly with medication, and then some more medication, and then some more. A nurse came out to see us, and then some more. She slept fitfully in her bed, and I slept fitfully in the chair next to her. She’ll feel better in the morning.

The morning feels like a slow-motion avalanche. By 10:00 we’re both starting to think this is different (or maybe she already knew).

I sat her in a chair across from her bed as she was more comfortable sitting up straight. Our faces were 18 inches from each other and I start to feel like sand is leaking out between my fingers. I say “I wanted to thank you”, to which she replied “for what?”

“For my entire life. It’s been really good. And it’s all because of you.”

She looks in my eyes, understanding. She says “I should be thanking you. But I have regrets” I cut her off “we all have regrets, but what’s important is what we did right. Look at David, he could have been a real train-wreck, but he turned out great! We did ok”.

She shook her head and corrected me, “we did much better than ok”.

The phone rings or there’s a knock on the door or some other thing which interrupts us. We’ll pick up the dialog later, except we won’t.

That was the last real conversation that she would have with anybody.

She starts to have some pain so more morphine to keep her breathing normal. And something else, and then something else. A nurse visits, let’s bring in a hospital bed, no trouble. We put her in the bed and prop her up. And for the first time she looks likes a cancer patient.

Between the meds and the sleep deprivation and shortness of breath she’s having real trouble forming even short words now. David and I are taking turns being with her.

I have a sudden need to show her something. I search my phone and computer and cloud storage, there!

Taken just outside Alice Springs in Australia, before we were married, but after we knew we were meant for each other. She’s eating some kind of fluffy pastry (so a LONG time ago) and just enjoying life.

I run into the bedroom to show her. “This is my favorite picture of you, of all time”. She grabs the phone and pulls it away so she can see, recognizes it, gives me a big smile, takes as deep a breath as she can and says “good times!” Those are the last fully coherent words I would hear from her, and it took everything she had to give them to me. It’s a gift I will carry with me always.

We move furniture into the room so we can camp in there. She can’t open her eyes without seeing her son on the bed, or me in a big ol’ rocking chair that she bought me for my birthday.

We call my mom to drive in from Ohio to help, so I can get some sleep that night. Looking back, there were dozens of friends of hers I could have called who would have dropped everything to come and sit with her. Why didn’t I? I couldn’t tell you. She was always better at knowing when to ask for help.

I can’t believe this is happening. I tell David that I think it’s going to be that night. He’s stunned. How can this be? To his credit he’s then at her side most of the night. And let me tell you it’s ugly. He’s not old enough to see this. I’m not old enough to see this. No one should see this.

We play her her favorite song. She seems to notice. I’m running out of things to do.

https://youtu.be/CWzrABouyeE

She’s fighting, hard, for every single breath now. When it’s impossible to take another, she takes it anyway. And then again, and then again. Relentless.

Which surprises us. Not. One. Damn. Bit.

My mom convinces me to sleep while she takes the first shift of the night. David rubs his mom’s arms, holds her hand, and talks to her. She opens her eyes and takes in her surroundings for the first time in many, many hours. For a few brief moments she’s there again. His last gift to her.

Shortly after that he’s at the foot of my bed, waking me, telling me that she’s gone.

That’s the long and the short of it (mostly long).

I wanted everyone who cares to know that she really did not suffer needlessly, that she was not alone, and that for what it’s worth the people who loved her did their best by her.

I firmly believed that she planned this. That she pulled back the bow as far as it would go before letting the arrow fly. That by spending the last few months giving the maximum effort up to the minute when she started down hill, she caused herself tremendous pain, but limited the suffering of those around her to a couple short days.

She met her end as she designed it, like she lived her life, on her own terms and no one else’s.

It is my sad duty to report that Helena passed away in the early morning hours today. Although she fought hard to the very end, she did not suffer, and was never alone.

63.

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We are currently working on funeral arrangements, and how to service everyone’s interests in light of our unique health circumstances. More to come on that tomorrow.

For all of you who have been texting and e-mailing and calling, thank you. Amazing people have amazing friends.

All my best – Brett

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UPDATE: Final Arrangements

There will be a viewing & visitation for Helena on Saturday, July 18th from 2:00 – 4:00 at the Schellhaas Funeral Home in Bakerstown, PA.

https://www.google.com/maps/place/Schellhaas+Funeral+Home+%26+Cremation+Services,+Ltd./@40.6491733,-79.9338349,15z/data=!4m5!3m4!1s0x0:0xa53f0ad2553485b2!8m2!3d40.6491733!4d-79.9338349

We chose a viewing so that anyone how wanted to say goodbye to her in physical form could do so. This format also allows for people to move within the room at their own pace and distance from others. Masks are to be worn at your discretion.

David and I will be in attendance, as well as some of my family. Helena’s family is currently unable to attend due to health risks.

We have also decided to delay the traditional memorial service to a time that is more safe for Helena’s many friends. At that time we will meet to fully and appropriately celebrate this great life.

Helena was extremely mindful of her health and the health of others. So please, if you have reservations about attending the viewing do not do so. Soon enough we will all get together to do it up right. Our memories of her aren’t going anywhere.

In lieu of flowers she asked that you make a donation to your favorite charity in her name, or to her favorite charity, the Taoist Tai Chi Society.

If you have any questions please e-mail me at wbretttrent@gmail.com

Thank you

I signed up with hospice care officially yesterday. They are wonderful!! They provide everything I need for comfort. They will send someone to visit me once a week, more when it’s needed. The nurse will check my vital signs and medication, adjust everything. There are also aides to come out to my house if/when needed. They will give a report to my oncologist every week and if anything needs to be change, they will do so. Everything is covered under insurance including all the medical equipments. Hours after I signed the paperwork, lots of helpful new toys showed up to make my life easier including a wheel chair, a walker, a shower bench, and a portable oxygen tank that gives me about 5 hours of oxygen. I am no longer imprisoned in my own house due to oxygen needs. Someone could take me out for a walk! Any volunteers?? 😉 😊

I am so happy and impressed with their service so far. My nurse came for a visit this morning. Guess what, her name is Diana. That’s my sister’s name. What a coincident! I pretend it’s my sister that’s take care of my on this last leg of journey.

Thank you for all your comments, prayers, emails, pictures to cheer me up. I miss you so!