The Kids are Alright, but Cancer still Sucks

The kids are alright (and Wally is too), but cancer still sucks. It’s been 5.5 months since I held my mom’s hand. It’s been 5.25 months since I talked with my mom.

This past weekend, we went back to the cemetery. It was 6 degrees at the burial and 86 degrees this past weekend. A lot has happened in those 80 degrees, those almost 6 months. It was dad’s birthday. It would’ve been mom’s birthday. It was Wally’s birthday. It was Passover. It was mother’s day. Another year of school for Max and I ended. It was father’s day. It’s almost Max’s birthday.

There’s so much to tell Mom- to laugh about, gossip about, roll our eyes at. It’s strange how life keeps going on. Another day goes by that I couldn’t pick up the phone and call her. You start using past tense verbs: she was, she liked, she was, she joked, she was, she said. She was. It’s strange to say “was” because Mom is absolutely still here. Everything I do I think of my mom; what she would say or do, the advice she would give, how she would say it like it is.

Mom always looked for the silver linings. She always said, “Life is what you make of it. Some people will be miserable and complain about the obstacles and challenges in their life. Not me. I choose to accept what is, let go of what was, and have faith in what will be.” I am still in awe of her. She went through one of the worst things life can throw your way and she did it with such grace and dignity. When I’m stressed and want to stomp my feet and pull my hair, I can hear her telling me it like it is, “hey, at least it’s not cancer.” And I have to laugh because yeah, it’s not cancer.

There’s no good in complaining or being miserable. Life is not easy; everyone has something, but Cancer still sucks. We can still be mad at Cancer. Because of Cancer I have shed more tears than I ever wanted to. Because of Cancer we lost some of the most amazing energy and laughter and joy. Because of Cancer my World has stopped when my mom was diagnosed the first time, the second time, and when she took her last breath. What Cancer did at the end is for another blog post, but 80 degrees later and I am still mad at Cancer.

We can take that anger and continue Mom’s advocacy for MBC research. We can take her faith, energy, and positivity forward with us. Mom, we’re alright.

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The Next Chapter

Today is National Cancer Survivors Day®. I paused to see it on my newsfeed because it’s the first one without my mom. I have a lot of thoughts, so this is how I choose to start the next chapter of this blog. This year will be filled with a lot of firsts, but this one is a stark reminder that my mom did not survive cancer. Or did she?

Survivor is defined as “a person who survives, especially a person remaining alive after an event in which others have died.” Based on this definition, my mom did not survive. Is this National Cancer Survivors Day® fair to those with MBC? To those who have lost someone from cancer?

I believe those who went through something weeks or months of treatment, life-changing events, who hear the words “malignant” deserve to celebrate completion of a treatment. My mom was a big proponent about celebrating life, but having pink photo ops in our faces was difficult. Those that got through treatments for early stage disease got to ring a bell, wear a big pink feather boa, and take a photo. I recognize how awful treatments are and that there is reason to celebrate.

When my mom had stage III breast cancer, she smiled and celebrated at her last treatment. I wish we could go back and celebrate, but also be educated. When we said she was cancer-free we should have been saying she was NED (no evidence of disease). I wish then we knew that 30% of early stage breast cancers return as metastatic. That her BRCA gene mutation put her at a higher risk of recurrence. That we should celebrate but cautiously knowing that things can get much, much worse. I wish we could go back and start advocating for MBC research. I wish we knew that malignant does not necessarily mean deadly. Metastatic does.

Max and I both quoted Stuart Scott in our eulogies, “When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live.” My mom beat cancer to the ground. So maybe she did survive by how she lived, why she lived, and the manner in which she lived. But, I don’t like using the survivor terminology.

Neither did my mom. In an October 2014 blog post she wrote, “although we are surviving, we will ultimately not survive from our breast cancer diagnosis.”

I hate the “cancer battle” imagery. I hate “she lost her battle.” When we invoke “survivor” we invoke similar language to battle. I think my mom would say, celebrate life. Have something to look forward to. But, “survivor” should be removed from the dialogue. I don’t like the limbo it puts those affected by cancer into. Instead of saying Happy National Cancer Survivors Day®… I say, here’s to life and remembering. That is the sentiment I carry forward into this next chapter.

Mother’s Day 2018

What a Wonderful Life

Susan Lynne (Shanbaum) Rosen, age 53, passed away on January 18, 2019 from metastatic breast cancer surrounded by her husband Mark Rosen of 28 years, daughter Michaela (24), son Max (19), and dog Wally (8).

Born and raised in Southbridge, Massachusetts on February 20, 1965, Susan was the daughter of Florence and Sam Shanbaum. Susan grew up loving art- waking up at night to draw and paint throughout her childhood. After graduating from Southbridge High, Susan attended the University of Massachusetts Amherst where she graduated with a B.A. in Early Childhood Education. Susan applied her degree as a daycare teacher in Tewksbury and Boston, began her own home daycare, and substitute taught in the Franklin Public elementary schools.

At UMass in 1986, Susan met Mark. Having been made for each other, they were married in June 1990 and lived briefly in Melrose. Susan and Mark then moved to Peabody to start their family. Two kids and several years later, the family settled in Franklin MA in 2003. Devoted wife and mother, Susan enjoyed baking, cooking, gardening, and helping others. Susan loved family vacations- Hawaii, Mexico, the Caribbean, and Disney World- the happiest place on earth.

Susan was originally diagnosed with Stage IIIC breast cancer in August 2010. After months of treatments, followed by almost three years with no evidence of disease, Susan’s cancer returned and metastasized in September 2013. During Susan’s journey with metastatic breast cancer (MBC) she documented her metastasis to the bones, liver, lungs, and brain on her blog letusbemermaids.wordpress.com. As a true teacher, Susan educated friends, family, and strangers about MBC and the lessons she learned along the way. Susan inspired many with her honest writings. She was recognized as a top MBC blog and was interviewed in newspapers, forums, and by Robin Roberts’ production team for WebMD.

“When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and the manner in which you live.” -Stuart Scott

Susan leaves behind her beloved husband Mark E. Rosen of Malden, children Michaela B. Rosen and Max F. Rosen of Franklin, and dog Wally. Susan also leaves behind her siblings and their families: Mark Shanbaum, Cheryl Trombley, Bruce Shanbaum, and Mindy Bessette. She reunites with her parents, the late Florence and Samuel Shanbaum of Southbridge.

Relatives and Friends are invited to attend Susan’s funeral on Monday, January 21st at 12:00pm in the Schlossberg & Solomon Memorial Chapel at 824 Washington St., Canton MA, 02021 followed by interment at the Beit Olam East Cemetery, 42 Concord Rd., Wayland MA 01778.

Zikhronah Livrakha, may her memory be a blessing.

In lieu of flowers, donations in Susan’s memory may be made to the Dana-Farber Cancer Institute to support women’s cancer research.

Online at: http://www.myjimmyfundpage.org/give/susanrosen

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Let’s Talk About Death

Our mom started this blog to educate and we’re not done educating yet. Mom made it clear to not treat Cancer or death as taboo. There’s another phase in this journey.

Recently, mom decided to stop treatment. The last treatment was no longer working and all the tools in the toolbox, all the treatments, have been tried. Upon determining there were no more options, Mom entered hospice and it’s not what you might think it is.

Our in-home hospice nurse, we’ll call her Nurse T, comes over three times a week, but only for one hour. She checks mom’s vitals, administers medicine if it’s the time of day, and asks her pain level if she needs medications. Nurse T set us up with a wheelchair and shower chair. Aside from that, it’s up to us, her caregivers, the remaining 23 hours a day. We are very fortunate to have both the insurance and personal means to receive an in-home private duty nurse if it comes to that. However, finding a private-duty nurse has not been as easy as we would have expected. We’re still trying to figure out that piece of the hospice puzzle. We now use a pill organizer and check off a chart to keep track of medications, we get mom water (with a straw; she stopped eating food), we help her to the bathroom, and to change her clothes. We help her sit up. She no longer can use the stairs so she hasn’t been downstairs. She’s confused about certain things. She’s jaundiced. She’s unsure of her medications. She picks up a TV remote and isn’t sure how to use it. She needs information to be repeated to her, even five minutes after we told her it.

This happened so fast. About one week ago she was still able to go on her iPad, she no longer is on social media. She was able to hold conversations with people, although extremely tired, now she dozes in and out of conversations. She was able to go up and down the stairs, although a struggle, now she stays upstairs in bed. She sleeps about 20 hours. Her body is tired. It is hard for her to speak, she only whispers and in short sentences.

Mom is dying. It’s the awful truth. She’s not losing a fight or a battle, she hated when people said that about others who died of MBC. Mom is ending her journey with MBC, and damn did she show us all how to live with what happens in our lives. We all knew this was how it would end. There’s no god up above that could deliver a miracle where her cancer goes away now. There is no medicine left to help her. She says she’s not in pain, she just wants to go to sleep and not wake up.

We’re mad “Death with Dignity” did not pass in Massachusetts in 2012. It failed 51% to 49%. So many messages sent to us and mom have said people hope she ends her journey peacefully. Death with Dignity would have been the most peaceful way. She would go to sleep and not wake up, just like she wants. But, that’s not the case. Now we drag out this process as her body slowly shuts down, she may enter a period where she is in pain. She is confused. This is not a glorified, dignified, or peaceful death. We’re watching our mom die.