Pt. 2: Broken by Mourning: Metastatic Breast Cancer and Alzheimer’s

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I returned from Florida on Thursday night very late. Exhausted. Glad for the small things in life, I’d been convinced to get a wheelchair. Having never considered myself handicapped in any way, I’ve avoided the hang tag for my car. Even when I needed it and it’s mot often I wished for the presence of mind and not the pride get in my way. I had wheelchairs waiting for me at check in and whisk me through security. They were waiting for me at my connections and on landing to pick up my luggage and take me to my car. I was slightly embarrassed but happier and less beaten up by the trip for it. Much gratitude to the men and women who do this job. If you’re in active treatment or have Metastatic or terminal cancer do yourself a favor and get one – there’s no shame.

After adjusting to east coast time when we landed at 10:00 p.m. to my body Bak in California it felt like 2:00 a.m. My circadian rhythms easily shifted to Florida time because I spent the better part of 27 years growing up there having moved when I was eight years old and then back after college in Gainesville, Florida. My first husband and I lived there until the it running away from all I’d recalled I hated about south Florida in the first place came to rear its Medusa head. A job I had, which I was commuting weekly for asked me to move.

Gladly, I said, so we packed up the u-Haul and went to Houston for seven years. We actually loved it there.

Homeward Bound

I also had no idea what the mood would be that I was walking into at home with my current husband but luckily it seems distance makes the heart grow fonder. And all the things I’d been complaining about with the house he discovered on his own and even said we’d go get a new refrigerator. At current tally we’ve had $6,000 of food wasted in the garbage container by a killer fridge that seems to mold anything that enters its doors of hell.

And he’d heard me complaining loudly about it but he’d not experienced life trying to make a simple salad or sandwich only to find two days in the refrigerator could be the death nail of said items. He hugged me hard saying he missed me and he knew what life would be like wen he lost me to cancer.

I said my friend died after a few days of rapid decline and we’d never know when mine would come but I came home. My friend would never come home again. I looked around thinking how I could do without meet with friends as soon as I can. I wasn’t going to leave this plane of existence without having met my virtual friends. Not going to lose another Lori before my time or theirs was up.

The emotional draining of the Everglades

Real live unicorns?

Hoping to have been refreshed I came back learning one of my best friends, Lori Burwell, had died on Wednesday. She was unable to get potentially life extending surgery to blast blood clots on her lungs. However, hospital one had 28 people waiting in ER mostly with Covid to get checked into their ICU rooms. Lori needed surgery immediately.

But by then as far as I can make out by trying to reach anyone and get some status on her when she stopped answering my texts, she had been taken to a second hospital. It had been too late at night to be operated on – by the next morning she had died from Metastatic Breast Cancer.

Another death from metastatic breast cancer. 119 per day (ASCO and the NIH) in the United States

A friend I spoke with biweekly and who I texted with each day or so, died so fast I am unable to take it in that today I couldn’t call her, text her, tweet her. So I tweet my unedited, undigested grief.

She died less than a week after she’d said she’d had enough, “I had a good life, Ilene,” in her darling (a Lori word) southern belle accent. She was more than cancer, more than metastatic cancer. Although we met on the courts of patient advocacy, where by trial and error she and I the older, white middle class women of the group didn’t fit into the marketable demographics. Neither our cancer types, nor our age, our skin color, our passing the ability to have children mark.

We simply weren’t marketable. We helped pave the way to have some success in a Covid-born, Zoom centric virtual world. We tried to schedule monthly meet ups for the group of LBBC advocates who expected an in person more personal beginning at the Philadelphia conference. Planned to room together. Planned all kinds of things we were unable to make happen.

We are (were) both make it happen kinds of women.

Having plans to join a group of friends who were to meet for the first time in person in Florida she determined she wasn’t well enough to go. I begged and cajoled unable to take in the state of her condition and just how rapid her decline would be. Then, too, the arguments that ensued between her and her family really stressed her out but she’d told me directly she didn’t care she was coming.

She’d already had Covid and a bad flu that she caught from her granddaughter the light of her life. She was threatened with not being able to see her and her little grandson for a month after her return; now they’ll never see Lori again. I cannot imagine the guilt that’s part of a death that hadn’t needed to happen so quickly.

But she was tired of the medication and the terrible side effects. She told me no more – she had a good life and was ready to die. Ready to die! Are we ever really ready? I suppose let this be a lesson in bravery and the willingness to not overextend our bodies beyond what we can take. Lori was beautiful- inside and out. She wasn’t defined by her cancer but that became the case as she made her wishes known over the weekend before the trip. She told me she was so stressed out by the discussions that needed to be had with her family that she was throwing up and needed sedation until Sunday.

I knew it was her decision alone although I knew there had to be more chemotherapy and targeted medication for her and she was not under oncology care that was best for her; we were all willing to bring her out to our cancer centers – all of us – to look at better care and opinions but again the arguments against her leaving and leaving with her family to fend for themselves to go. I couldn’t fix or save her – only WE know what’s best for us. Not one person knows better than we do.

Mourning my Mother after Five Years

I also visited my mother’s grave after she’s been gone since January 2016. My family had determined that she was not to know about my breast cancer because it would upset her Alzheimer’s addled brain. Yet as my family suggested I would likely tell her about it, I had no plans to tell her. Why upset her?

One day years ago my mom collected a bunch of bibles and had me put my hand on them and swear to god that I’d never bury her but cremate her and have her put into a mausoleum. I said mom of course we’ve already discussed this. She’d not even shown an inkling of the dementia that would eventually devolve into Alzheimer’s and kill her. She died from a mixture of neglect by my brother and his wife who took her off of her dementia medications because they “weren’t doing anything.” That’s when I called my aunt and step sister to please get there and check on her since she’d been living with them in a house she’d loaned them a substantial amount of money to buy and it turns out was paying enough rent to cover the mortgage.

She was placed in a nursing home and my aunt texted me to say it would be too upsetting for y mother to see me and I’d not be given access to the extended care facility even if I could find the address. I had every intention of going with Craig to find her and it was about 18 months later we were about to buy tickets to Tampa where she had by then resided and I got the text letting me know she had died. I never properly mourned her. I knew I had to see her grave and sit and talk to her and I did.

Victoria Goldberg another Russian Jew came with me to the cemetery and stayed with me – she was one of four people who met up in Florida together; all of us great friends who’d all not had the chance to meet in person but met some of us met many years ago some of us within the last two years. All of us including Lori met in an MBC healing circle every two weeks for the last seven months. When it was decided that we’d meet and have fun back in July for this October the unanimous yes came from us all.

I am so grateful we had the chance to meet before any more of us succumbed to MBC. Please see the last post for the introduction to our get together. It was punctuated by Lori’s death but none of us regretted being there together. Healing circles in person are so much more deeply felt than on zoom. I am still very glad to have had those healing sessions to lean on for the end of the trip. A trip that ended a long term battle with the mourning process of my mother and began one of a dear friend from the same disease that would eventually kill all of of us who met there.

One day we’d become a statistic. But we could count on the others to shepherd our memory as long as they lived.

Four of us are currently known as exceptional responders outliving the six year mark of living with MBC and all the poisons to keep our bodies as close to no evidence of active disease as possible. All of us have had treatments that include or included some combination of being radiated, having IV and pill form chemotherapy, taken targeted medications, taken hormone suppressant pills, infusions of bone strengthening and other hormone suppressants, and yes even surgery as part of our plans we chose along with our oncologists.

Lori didn’t have the good fortune of living closely to as good health care as the rest of us; we all had to sit helplessly by our hands tied. We all wanted to bring her to our cancer centers or suggest others but Lori was not going to have that argument with her family. We wished she’d have done so but we cannot go back. We can only go forward and continue our healing circles every two weeks without her.

What is a healing circle and where can you find one?

In healing circles (healingcirclesglobal.org or commonweal.org (there’s a lot of excellent content there on cancer and cancer resources, healing circles being one of them. I trained for two long and intensive groups over the course of several months plus ongoing mentorship to learn to become a host and a guardian of healing circles.

I was called to service after attending my first “coming together through covid” circle towards becoming an MBC host of an MBC circle outside of the HCG organization, which is up to anyone to do, and helped me jump right into working with two organizations with healing circles global. All circles are still currently held on zoom. I’ve been part of a long and ongoing cancer circle, to wit one person I do know who joined as well said this was “the best thing I’ve done for myself since my (terminal cancer) diagnosis.” I’d tend to agree.

Prior to that I was in a monthly writing circle and was asked if I’d like to join the HCG writing team; my answer of course a rousing yes.

I currently co-host a cancer healing circle beginning this week Saturday at 3:00 pacific. It’s for all cancers not only breast. And the writing circle publicly opened last month, which I co-host with another delightful woman, with whom I meet a couple of times a month to plan, prepare, and get to know more fully.

Each healing circle runs for 90 minutes. I co-host a writing circle that’s oversubscribed but do put yourself on the waiting list if you’re interested. There’s new circles opening all the time. In the writing circle you’ll have no no pressure to share what you’ve written and we will give a writing prompt that you can work on off camera on zoom. When you come have an opportunity to read what you’ve written or not share it all or share a small part of what you wrote. There’s a healing circle she was part of and the agreements are ones you may be interested in:

  • Intention
    • create a safe space to heal ourselves, each other, and the world.
  • Agreements
    • We treat each other with kindness and respect.
    • We listen with compassion and curiosity.
    • We honor each other’s unique ways to healing and don’t presume to advise, fix or save one another.
    • We hold all stories shared in the circle as confidential.
      • (I’m adding this for clarity – we also don’t cross talk meaning using someone else’s feelings and discussion for our own jumping off point, we never interrupt, and we do not critique anyone’s share in circle or outside of circle. It’s a safe, confidential, container where no one is judged.
    • We trust that each of us has the guidance within us and we use the power of silence to access it.

There’s circles for caregivers, grief, death and dying, cancer, writing, LGBTQ, women, men, environmental stress, nurses, and several others. Check out the healing circles web site, as I am certain you’ll find something that suits you. What’s the comment I get the most from people who share what they feel about being in circle? 1. I don’t feel judged in any way. 2. This is the only place where everything I say outside of my therapists office will be confidential and I can say whatever I feel.

It’s a safe container that the above agreements are read at the beginning of each circle for everyone to thumbs up that they understand and agree. I highly recommend you check them out and if you might be interested in joining an MBC circle get in touch with me I will open a second one every other Thursday from 3 – 4:30 pacific if six of you show interest and can commit that time. I’d be happy to – I too get much from it and I’d love to include you, too.

5 comments on “Pt. 2: Broken by Mourning: Metastatic Breast Cancer and Alzheimer’s”

  1. Thank you for sharing Ilene. I can only imagine how painful the circumstances surrounding your mother’s death were and I am pleased you’ve been able to see her stone. I am so thankful for Lori, her death came quickly, too quickly for us but perhaps for her it was for the best and I hold on to the hope of eternal life, where there is no more pain or suffering. Grace and peace to you xxx

  2. I’m glad you included the photo of your mother’s stone. And I’m more glad that you finally saw it. Grief is so physical and emotional. When I think of Lori, one of the recurring thoughts I have is that she did go home. It just isn’t the home we expected so soon.

    1. You know Marie the one thing I can’t share is what takes place in our healing circles but I am open to sharing my experiences with grief and mourning honestly and openly so that others can share their experiences or as with you find a person with whom their experiences resonate – I think the human heart is a complex place of emotions we sometimes cannot fully explain but there’s a commonality to death – it’s the worry of the loss of our sprits and the concern for those we leave behind in their grief. We dont want our death to be painful for anyone else who wants to create more pain in an already difficult time – our time of leaving the world of the living. No one knows where we go or what happens to us but there’s still a common way in which we all will one day leave this world. It’s walked with us hand in hand through the lives we’ve led. Now it’s time to say goodbye from the living and that’s the mystery we walk each other towards to then part the here and now. We cant skip the death of our lives, we can hope only for a good death and that’s indeed what I hope for.

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