August 23, 2019: Seven Months

8/23/2019
10:42am

7 months a widow.

2 years ago today, Teresa had what was supposed to be a regular checkup. Maybe get a discount on her work health insurance for having certain exams done.

Our FNP, Sally, said, “There’s a lot to be worried about,” once she saw Teresa. They did multiple labs and sent Teresa for an emergency CT and ultrasound at Bristol Regional Medical Center.

That night as I was getting ready to go to the store for dinner, Sally called to tell us that the radiologist couldn’t find T’s uterus because the mass was so large, and they were sure it was cancer. Even then they thought it was some type of sarcoma; they suspected carcinosarcoma (carcinoma + sarcoma together).

We went to the ER the next night (24th); on top of everything else, she desperately needing a blood transfusion — her numbers were super low. She was admitted. I never made it to the store.

On the afternoon of August 25, 2017, she had a 32lb tumor removed + 8lbs fluid. We got her official diagnosis a few weeks later in her first post-op appointment. While the surgeon’s assistant was carefully taking out T’s staples (surgeon and assistant alike surprised she’d already healed enough for that), the surgeon came over, put a hand on my arm, and said, “It’s really bad”.

Bad doesn’t even come close to the nightmare it was. Is.

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I wish every single day that I had found the general surgeons, that I wouldn’t find until it was too late, back then. Before I went down the path of “must have a leiomyosarcoma specialist”. Now? I think that is utter crap. A general surgeon saved her life originally, after all. The general surgeons I found who could have done the second surgery she needed that none of the leiomyosarcoma specialists had the nerve to do. Surgery that I still believe could have saved her. If not for always, given her much more time — and with so much better quality of life than she was forced to suffer through for the last 3 – 3 1/2 months of her far too short life.

You may see me and talk to me and everything seems fine, and yes, as some of you know, there are some good things happening for me, but nights are agony. Nights are lonely. Unending loneliness. I miss being held and feeling utterly safe, a way I never had before she first held me.

Teresa told a friend of mine years ago that, “We are very happy. She is the other half of myself, and makes me whole.”

Teresa was my other half, too. She made me whole.
I am broken. Shattered.

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I’ve wondered about PTSD and complicated grief, but have little interest in the amount of talking it would take with “a professional” to know for sure. If I could just go and say “this is what I’m going through emotionally and some physically” and get a diagnosis without talking about everything with a total stranger, maybe, but I can’t. I’ve never been a big fan of that. And not helped by that the last person I saw gave me more stress, which I definitely don’t need right now.

So I write these monthly posts instead. I plan to do this through January 23, 2020, at minimum. After that, I don’t know. If you want to see something else from me at this time, I’m learning to use Instagram. I’m easy to find.

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************I miss the future we were supposed to have together.************

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I am ANGRY and devastated, that she will never live in my new(to-me) home. That we won’t decorate it together.

That I have to pack up the only home we had together without her.

That I have a suitcase FULL of photos she wanted to go through and organize, and now I have them, and how do I even begin? Who will be willing to sit with me and patiently identify the people I don’t know? To attach the right years (or approximate years) to the photos?

That even though others miss her, their lives seem to have gone on and mine feels like it stopped dead with her. The huge happy part of my life that made me feel whole and safe died with Teresa and I can’t move on from that. There is no moving on.

That I have nightmares nearly EVERY NIGHT. (Goes *great* with living a nightmare every day. 😕 )

That even though I get visits (they are absolutely visits, not wishful thinking or dreams – it is a totally different experience that I think you can only understand if you’ve been there with such great loss – see link in comments) from her, so many of the visits are angry, raging angriness from her – at the doctors that refused to help her. At the hospital staff that let her get bed sores and then didn’t even treat them until they were freaking stage 4! Anger from her at the people who didn’t visit/call/email her and “why didn’t they want to see me/talk to me?”**

I didn’t know what to tell her before she died, much less now. I don’t (think I) recognize every name she mentions. She cried so many times about people who didn’t visit, or call, or email. She so desperately wanted that reassurance that people she knew cared. When it didn’t happen, even after being hospitalized, she decided that those people didn’t care about her. **It may not be true, but that is how she felt. That was her truth.** And apparently she still feels it. It made her desperately unhappy, and me too, because there was nothing more I could do for her there. I was already pleading in nearly every post for people to reach out directly to her. But I still feel guilty I didn’t find a way to do more.

I feel like I utterly failed my love in so many ways.

Please, please, if you have anyone else in your life in a similar situation now, don’t assume they know you care. Or even if they’re perfectly healthy! Tell them! ***She didn’t know.*** It still breaks my heart to remember how that wounded her.

Anger from her because she’s NOT supposed to be dead. Or she visits and tells me, “see, I didn’t die, I’m okay and the cancer is gone now” . . but then I wake up and it’s like it’s January 23, 2019, and I’m lying next her stillness in the hospital again, holding her cold hand, and the awake living nightmare begins all over again. But I don’t want her to stop her sleep connections either.

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I’m angry that the hospital starved her. I’m angry that they gave her more pain drugs than anything else, including ones that were dangerous for her to have with opioids. Opioids in themselves, fine, but they literally drugged her into senselessness. I am angry we had to fight to keep her on antibiotics. I am angry they often didn’t include her oncologist. I am angry they mostly didn’t listen to me, even after her oncologist told them to listen to me.

I am angry that there wasn’t one damn person certified in lymphedema. I’m angry that PT gave up on her after she refused twice or so…those times either when she was trying to eat OR right after she’d had her legs, where the lymphedema was, rewrapped. Sometimes this included surgical intervention where they removed large sections of her skin and tissue because of the extensive damage. But, please PT, assume that this means she never wants you to return.

I am angry we had to fight for every blood transfusion, that they kept her blood volume low enough that it severely diminished her ability to eat or communicate. I’m angry that while I have photos, even of the bed sores, it’d be about impossible to prove how big a part the hospital played in her death.

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There’s been all sorts of awake time connections too, not just sleep connections — like her urn moving despite being on a totally flat, stable surface, her urn *opening*, NY and VA quarters being flung onto the floor from bookcase shelves … and the quarters are on the back of deep shelves, etc…

She said she’d find a way to come back and visit me physically. She said maybe as a cat. I would have liked that. But for now, I’ve been inundated with spiders. They literally show up out of nowhere. Loads of them. Spiders are supposed to represent the presence of feminine energy but….a cat would be so much less alarming… 🕷 🐈

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I’m angry that I’m not old enough to collect SSA widow benefits. That I have to wait TWENTY YEARS to be old enough, and on the chance that I met someone else in those 20 years, that I would lose my widow benefits from Teresa if I married someone else. The age policy needs to change. Widows are widows, no matter how old we are when we have the misfortune to become one.

******Help me change the policy??? Anyone know where to start?******

Angry (and depressed) that I still have to finish writing her obituary. And publish it. That it has to be written in the first place. If you thought you missed seeing it, you didn’t, it’s still unfinished. Please have patience.

She liked reading the ones online that were funny and really helped you get to know the person. Humorous writing has never been my strong suit, even in good times. So, I’ve opted for the style of sharing a lot of things she liked. And didn’t like. She liked reading those too, so I hope she likes hers.

[No class lesson on writing obituaries ever prepares you for writing one for someone you love so deeply. Lesson learned the hard way: write obituary drafts for you, your spouse, your loved ones *now*. You can always edit them later. Don’t make someone, in the agony of grief, write yours from scratch. I’m writing mine along with hers so that whenever it is needed, someone else isn’t in the position I am in now. There’s a great template online to go by, I’ll put it in the comments.]

We had living wills, power of attorneys, medical directives . . . but they leave so much out. We’re taught they are the documents that provide and cover what we need in these situations. But they don’t. Not really. You need SO MUCH MORE.

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I miss Teresa.
I miss us.
I miss the future we were supposed to have together.

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Being a widow SUCKS. And makes me depressed and furious and lonely.

And, yeah, I still cry until I can’t breathe when I write my monthly posts.

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If you honestly read all of this, thank you.

The meaning/origin behind the band/artist name Glass Pear:

Origin of the name, “Glass Pear”:
“A lot of the songs I write are about the fragility and transiency of life and love. So I wanted to find a name that expressed that. Apparently the ancient Chinese believed that the pear was a symbol of immortality (pear trees live for a long time). It’s also a symbol of affection in other cultures. In Chinese the word li means both pear and separation, and for this reason, tradition says that to avoid a separation, friends and lovers should not divide pears between themselves. So for me a glass pear is a pear that is fragile, breakable, needing protection, just like love.”

Lyrics to My Ghost:

[Verse 1] Lovers come and lovers go
Once they lived, but now they’re ghosts
Walking the streets they used to know like shadows

People disappear
Every hour and every year
Sometimes I believe they’re here, like shadows, like shadows

[Chorus] Who can you trust in this place? In whom can I put my faith?
If you’re real then show me now who you are
How can I love without grace? Shine a light on your face
If you’re real then show me now who you are

[Verse 2] Blowing like a secret wind
Pouring on my naked skin
Like a river flowing in the ocean

And when I turned to see your face
I saw a joy I could not place
Vanishing without a trace like a shadow in the sun

[Chorus] Who can you trust in this place? Where can I put my faith?
If God is love, then why’s the world the way it is?
How can I love without grace? Shine a light on your face
If you’re real then show me now who you are


** Not counting people who physically couldn’t visit because they too were going through treatments, or had other health situations which made traveling impossible. She totally understood not being able to travel in extenuating circumstances.

She didn’t understand why people couldn’t call or email or PM Or FaceTime or FB video chat.

To those who did, she was so happy even if she could not express it easily. Writing became very difficult for her, but she could still slowly read emails/texts. Thank you those who continued to text even if she didn’t reply. She read them, or I read them to her, and replied to you for her when I could.

Maria, thank you for all your video calls with her, Jimmy, thank you for dropping everything at work to call that day. And Jeff, thank you for continually texting me to work out times you two could call each other.

Sara, we could not have done so much of this without you. From that first night in the hospital in 2017, through the bitter end. 💕

Thank you to those of you who left her voice mails on the phone I got her. Anita/Mom, Peg/Mom, Pete (one of my brothers), Jeff, Maria, Vanessa, Cathleen, Heidi, Maura, Sally. She was able to listen to all of them except the one that came in on January 21. She really, really enjoyed hearing your voices. Especially the recordings where people just rambled on about their day; a normal call. She didn’t understand the differences much between voicemails and an actual, live call, by then, so she talked to all of you. I wish I’d thought to record it so you could hear her responding to each of you.

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