Diane's story, Part 1: settle in for a long one
Diane & I met in 2013 at
UUMAC: the Unitarian Universalist Mid-Atlantic Community, a yearly camp for
UUs. In 2013 she was doing a metaphysical workshop, a weeklong morning session
that followed morning worship. We immediately bonded over our metaphysical
interests, tie-dye, crystals and weird senses of humor. I'm no slouch in the
metaphysical-energy department, but Diane's abilities were leaps & bounds
ahead of mine: seeing people's auras, spirit animals, ancestors around them,
energy working.... I was more than a little in awe of her.
At that time Diane was living
& working in Cape Cod as an Occupational Therapist. Loving the area I happily
visited her several times. Diane had been diagnosed with breast cancer before
we had met, was already outside the 5-year point where she was considered ‘cured’.
This meant we also bonded over life-threatening medical issues which had forced
us to confront our mortality while in our 40s, an automatic deeply bonding
commonality. We became close friends.
When making the decision in 2017
to move back to Bucks County you may remember that my mother fell and fractured
her pelvis in 3 places. In that time of coping with renovating my house,
moving, selling the Phoenixville house, my mother's deteriorating health,
needing to handle everything for her, including moving her to assisted living,
Diane received the news that she once again had breast cancer. She chose not to
tell me, especially since it was a 'mild' case, ie felt to be easily treated. I
never knew all the details, because everything was 'fine' by the time she told
me, at least a year later.
A couple years after that Diane
decided to move to the Baltimore area for multiple reasons: her son lived &
worked there, plus quite a few people from UUMAC lived in that area, giving her
a built-in support system. It also lead to her re-connecting with her son's other mother, her former partner, who I'll call 'J'. Shortly after moving there she found out that the
cancer had returned with a vengeance--it had metastasized widely, including
liver, bone & brain. Diane knew this was a terminal diagnosis, but cancer
treatment had improved so much she also knew she probably had several years
more of life.
While the chemo was controlling the cancer in her body the tumors in her brain started growing. Diane had told me previously she wouldn't do any extreme treatment with her entire body filled with cancer, so I was rather surprised when she decided to get radiation to her brain. Her thought process was since the cancer was so well controlled in her body it was worth getting the brain radiation. I’d seen patients go through this, but never had seen it up close, and it was absolutely brutal. The tumors were in her cerebellum (lower part of the brain, controls balance), and more on right than left, so the radiation concentrated there. She had visible burns on her bald head, but other changes were harder to handle. Her hearing drastically diminished (and never completely returned) plus she had ringing in her ears, and food wasn't just tasteless, it tasted horrible. She went through over a year of lack of any interest in food, made more difficult by her multiple pre-existing food allergies. There was also a lot of dizziness. Yet, she continued on with the treatment, in hopes of extending her life. She really wanted to see her son settled, and desperately wanted grandchildren. But despite the brain radiation & the chemo to extend her life it was clear that sooner or later the cancer would win.
Diane had spent her life working
in medicine, for decades as an OT and then as a case manager. As an OT she was
involved with patients who were on hospice, and saw their pain & struggles.
Knowing that she would be facing death, and familiar with what the end of her
life would most likely look like, Diane decided to take control. She
started advocating with the organization Compassion & Choices (C&C) to
get MAiD: Medical Aid in Dying passed in both Maryland & Delaware. Please
see my post, Nov 27, 2022, about my mother’s death for more insight into why MAiD is so
important: it’s not for everyone, but it should be available for those who meet
the narrow requirements, to give them a choice to die on their own terms
instead of tortuous suffering for themselves and their families at the end of
their lives. Diane was living in MD, but she registered her car at J's in DE. That meant she had a foot in both states, and if either
state passed MAiD she had the residential requirement covered.
As soon as I became an End of Life Doula Diane asked me to be with her at the end of her life, preferably the last two weeks. She knew my medical knowledge would be helpful, and she also knew I had the ability one has to learn in medicine: to compartmentalize, be clinical and not emotional. She also knew I would protect her son & J as much as possible. I think she would have asked me anyway, but once I became a Doula it was easier to explain to her son & J why she wanted me there, outside of our friendship. It was, as always for her, pragmatic, and she knew me well enough to know my priority would be her wishes.
In May 2024 Diane texted me and
asked me to come down and help her decide who to give her beloved crystals and
other belongings to in anticipation of her death. She didn't volunteer if she
had a feeling the end was coming, and I knew better than to ask. As open as
Diane was with me about her feelings she didn't love talking about events
leading up to her death or afterward. As often happens she had diametrically
different reactions: she'd done her cremation planning but was not open with
planning her memorial, she asked me if it would be weird if she wrote her own
eulogy (NO, it would not--do it!!) but never did so, didn't write her obituary
when I'd suggested. Generally she'd let me get a couple questions in, ie what hymns, who to contact, but then she wouldn't answer or change the subject, because even when you're pragmatic it's still difficult to discuss the nitty-gritty about your death. But she was ready to give away her crystals, and that told
me a lot.
For several months I went down for a few days to help her get rid of things, and she would casually tell me she expected me to take her crystals, lots of tie-dye, UU stuff...and anything else I wanted, expecting her son would want help coping with getting rid of an apartment full of stuff. When I asked if she had told her son or J that she wanted and expected me to have a bunch of her things she replied 'Uhhh--no, guess I haven't.....' She was comfortable talking to me about her death, but it was different with her son and former partner--that made it more real. Especially her son, who, despite that he was 30 yo she still wanted to protect, didn’t want to tell him how bad things were. Since I'm not a parent I typically refrain from saying anything about someone’s parenting decisions, but I did tell her my opinion that he deserved to know the truth about how seriously ill she was getting and about how she wanted things handled before, during and after her death. But she wanted his memories of her to be positive, to have fun experiences with her, not be thinking about her dying. She chose to keep a lot of things from him, which meant he wasn't prepared when things got worse.
As it moved into fall the plan was for her to finish her lease at the Baltimore apt April 30, 2025, and move in with J in DE. Understandably J didn't want Diane's entire apartment full of stuff (plus a large storage locker), and Diane said it was helpful having me there, although in all honesty we didn't make a lot of progress. She wasn’t really willing to admit she was going to die sooner rather than later, and resisted it in many ways. Example: in her front closet, taking up a lot of space, was a motorcycle helmet. I said to her 'Let's be realistic: you are never going to ride a motorcycle again.' She agreed, yet wouldn't give up the helmet, telling me that she would wear it during kayaking to protect her skull. Exasperated at her stubbornness I pointed out that if she went under with this heavy helmet she'd be virtually guaranteed to drown, but she refused to let it go.
I felt a shift in our relationship once we started dealing with the very practical and real aspects of her dying. Now I wasn't just a close friend, but represented the reality that she would die. While knowing that she trusted me more than anyone with these details it was hard to be the one who she now associated with her end, that her feelings towards me were mixed with the anger & resentment one feels when one is walking towards the precipice of death. But I also understood, because it was two decades ago that I was taking that walk, and even with the distance of 20 years you don't forget those emotions. They don't always make sense, but how can everything be 'normal' when you are facing your death?
After years of constantly beating
the odds, and living about three years past the date the oncologists predicted
she would die, Diane started to worsen last fall and into early winter. We talked
& texted frequently, plus we were both late night people and would talk at
11:00 pm or midnight. I made sure that I never gave my opinion on her
decisions, because they were her decisions, not mine. She was still working
with C&C, testifying in front of both legislatures, but by the end of the
fall 2024 session it wasn't legal in either state. Diane was devastated, in no small part because she saw this legislation as her legacy. And she was clearly
failing.
At the end of November/early
December Diane started falling more, was very off-balance. By this time my foot was broken, and it was frustrating that I couldn't help with anything or see her in person, assess her condition for myself. It became obvious that the timeline of her moving in with J now needed to be moved forward, couldn't wait for another few months. She started spending more & more time at J's, while
still going to Baltimore for chemo.
Diane had, in the past, sent me her MRI results, but she hadn't in months because she no longer could figure out how to access the patient portal. What she did tell all of us was that the tumors were increasing in both size and number--not good. In early December she discussed with me the possibility that the brain tumors had invaded her CSF (cerebral
spinal fluid), which would rapidly decrease her life expectancy. Medical
explanation: there is a difference between having brain tumors, which are
encased, vs having cancer invading your brain cells and CSF. Tumors grow, and
squeeze normal brain tissue, since it’s all encased in the skull, and as the
space gets tighter symptoms increase. But if the cancer cells are in brain tissue it advances much more quickly. It made sense that it was in her brain,
since she was rapidly deteriorating neurologically, falling more, having to use
a rollator all the time. She made the decision to get a lumbar puncture to
decide, and I asked what the treatment would be for that if positive. She said
the oncologist had explained that she would stop her current chemo, get a port
put in on the top of her head so the chemo could be directly given into the
meninges, but the oncologist warned her that the treatment usually didn't work. To me it sounded perfectly horrible, and not at all what Diane from a year ago would have even considered. In a very neutral tone I asked 'So, what are your thoughts about doing that?', her response was 'I'd do
it--I'm not ready to die yet.' There is a very large difference in looking at your death from a distance as opposed to weeks.
In anticipation of positive
results, as her symptoms had gotten so much worse, Diane arranged for a
party of her closest friends on January 4th. She told me that it would either
be an 'I'm moving to southern Delaware and don't expect anyone but Laurie to
come down there' or 'I'm dying soon, so this is goodbye'. Her blunt, pragmatic
reaction was typical. But I still couldn't get her to write her eulogy or tell
me what readings she wanted at a memorial service.
I was at Aunt Beth's for the holidays, so she & my cousins could help me stay entirely non-weight bearing. Thanks to my cousin Susan I got to the Jan 4 party, and knew everyone but a tall blond woman who identified herself as a reporter for Delaware OnLine, a news agency who reported on events in the state. She had approached Diane after seeing her testify at the DE legislature and asked if she could follow her story, including the end. What's funny is that Diane hadn't shared this rather important with her son, J or me: the three people who would be most involved in her last days. Her son & I both liked Isabel, whose mother died several years ago of breast cancer, which was when she got interested in MAiD and following the bill through the Delaware legislature.
I asked Diane what had prompted her to allow a reporter follow her through such a difficult time, and her response was 'Because I want my death to mean something.' She also said that she wanted Isabel to know everything, and I made sure to qualify exactly what 'everything' meant to Diane, and it included following her through to the end, including being unconscious and, if it happened, being present as and after she died. Getting her story out, with the hopes that it would help others, and hopefully get the legislation passed, is what was important to Diane. I asked her about my writing this on my blog (not that anyone but Deneen reads anymore), and she said 'yes', so, this is the reason for this lengthily post. It's also because I need to vent, and you'll soon understand why.
Going to take a break now, before relating the last several weeks.
4 Comments:
At 5:00 AM,
Anonymous said…
Hi Laurie,
Thank you for sharing this story.
Although I am a huge believer in Hospice programs and have been with two grandparents and a friend during their Hospice. Your writings have opened me to sides of dying they never talked about, so thank you.
As always your writing style lets me "feel and see" some parts of the story. Allows me to visualize as I read..
You are in my thoughts ,I know how I feel reading this, I can not imagine how you feel going through it. She is blessed to have a friend like you.
Deneen
At 5:27 AM,
Anonymous said…
Everyone have a Blessed Holiday
Deneen
At 7:47 PM,
Anonymous said…
Laurie,
Summer finally arriving , it feels like it's going to be a hot summer. Be safe in the coming hot weather rain
Deneen
At 8:11 AM,
Anonymous said…
Just checking in , hope all is good
Deneen
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