Always with Us, Always the Activist (and Friend)

LORI

Always with Us, Always the Activist

Lori Lynn Wallace-Pushinaitis will be forever missed after her passing Saturday night, October 20th, 2018. She died peacefully at home after a 7+ year, hard fought battle with breast cancer. Lori was a caring person who touched the lives of so many, but first and foremost, she was a fiercely loving Mother, and a supportive and loving Wife.

Always the activist, Lori was first, deeply committed to caring for the environment throughout her tenure with the City of San Jose, Environmental Services Department. If you decided to throw recycle in the garbage, or let the water run too long in Lori’s presence, you did so at your own risk!

When, in 2011 Lori was diagnosed with Stage lla breast cancer her focus turned to advocating not only for herself, but also for her fellow cancer sisters, of which there are many. She was an active member of the support group BAYS (Bay Area Young Survivors) where she both gave and received endless support to and from young women who were going through similar struggles. As the years passed, so did many of the women she grew to love so much, from a disease that she felt received more funding and attention for Awareness, than a Cure. This is where her activism took wings.

Two organizations that she felt properly addressed metastatic breast cancer and the funding needed for finding a cure are Metavivor, and Metup. She traveled the country extensively attending various conferences to bring attention to their cause.

As Lori’s cancer progression started to take its toll on her mind and body she decided to make sure she had the opportunity to pass with dignity, and on her own terms, when the time came. A fierce supporter of the California End of Life Option Act, she was asked to take part in the documentary Altered States BBC documentary, “Death”, produced by the BBC’s Louis Theroux. Louis and his film crew traveled to our home, visited with us while on vacation, and followed Lori through some of her daily trials, to shine a light on how the California End of Life Option Act can give people some comfort and control as they near the ends of their lives. Lori was extremely passionate in advocating for the End of Life Option Act in California, so terminally ill patients like herself would have the right to die with dignity, and on their own terms. This film is a parting legacy of Lori’s heroic activism and passion for what she believed in.

Lori has also published two short stories,

“Fuck Silver Linings and Pink Ribbons”, can be found in the book Shivering in a Paper Gown

“100% a Mom”, can be found in the book, Agony and Absurdity: Adventures in Cancerland

Lori is survived by her father Robert, sons Evan and Braden, husband Mark, extended family, and so many friends that have been touched by her Love and Kindness.

Patient advocacy and cancer support groups that were important to Lori’s cancer journey and require special thanks, BAYS (Bay Area Young Survivors), Metavivor, Metup, First Descent, Commonweal, and Young Survival Coalition

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What are the statistics on incidence of metastatic breast cancer?

There are estimates that 20-30% of patients with an early stage cancer will have their cancer return as metastatic, even if they were told their early stage cancer had been “cured.” Another 8% of new breast cancer cases are found to be metastatic at their initial diagnosis.

Variability and radiation

It always surprises me to see just how variable Lori’s health can be. Last week she was struggling to breath. This week she is talking a mile a minute (as is her normal) and yesterday it was without oxygen. Her lungs have improved a lot – but she is still very tired and has limited energy. This last bout of progression and allergic reaction has sapped away a lot of her muscle mass, so she is working on regaining some of her strength.

On Monday, she even walked around the park (with the help of oxygen). Walking and getting her body moving almost always make her feel better – however, it requires decent air quality.

After some scheduling issues, she is starting radiation this morning. In theory, she will be doing 10 sessions of radiation, but it is unclear how that will work with her chemo, as the delay has meant that her last radiation sessions would overlap or be too close to her next chemo. We will wait and see. She will get the rest of her radiation schedule today.

I want to highlight how her schedule changes constantly. Even if we have a planned schedule, her health is tentative and can cause a change at any time. I must admit that her doing radiation scares me. However, it is the best approach to help deal with her pain levels, and there is some hope that it will help reduce the size of her worst lung tumor.

For those who wish to visit or help, please take a quick read of the spoon theory.  She has limited energy so doubling up on things really helps – that is a visit in combination with a drive or a delivery. I’ve put together a calendar indicating when she needs help – https://sunshineandbutterfliesblog.wordpress.com/helpers-calendar/. I will say help needed on the days she is wanting drivers or food delivered. Please wait for a confirmation before dropping by. This changes daily.

Please feel free to volunteer by contacting me, and I will pass along a volunteer list to Lori. She has many volunteers, so keeping it all straight is something that I am helping her with here. Lori and/or Mark will be the ones that make the final decision as to who will drive and visit. Lori has so many friends, she wants to see and visit with many people, so having different drivers allows for that. Just be aware that things can change.

Thank you everyone – Lori is definitely feeling the love of you all.

Beach day

DawnLoriBeckyBecky

It was a big day for Lori. This was the first non-doctor’s appointment outing since she had the negative reactions to Gemzar. She has made an incredible transformation – the phoenix is arising again. On Thursday last week she tired easily and lost her breath talking or walking between rooms in her condo. By Saturday she was talking at her normal rate without losing her breath and was well enough that I felt comfortable leaving her in the condo alone – not something I would have done on Thursday.

Monday (yesterday) was a big day. You’ll note that Lori is still on oxygen. She still tires easily and is walking slowly – but she was well enough that we could whisk he away and bring her over to visit with Becky in Capitola, and make a short walk along the beach where we could sit, chat, watch a seal pop up now and then, and generally enjoy the sounds and smells of the ocean.

We, Lori, Dawn and I, had a great visit with Becky who lives in Capitola. It was nice to get out of San Jose for an afternoon. Air quality here isn’t that great right now – and that especially problematic for Lori.

For now she is healing and hoping that navelbine slows the progression of her cancer. Her next chemo option is taxotere which is loaded with horrible side effects.

Right now she is living one day at a time, and yesterday was a good day.