Betty’s Story

Site created on April 12, 2022

Welcome to our CaringBridge website for Betty.  This is a place where friends and family can find updates about Betty, view photos of her, and share stories about her. We appreciate your support and words of hope and encouragement. Thank you for visiting.

2021 was a pretty awful year for Betty. Not only did she lose her job, her housing, and her dog, Giordi, but she was unusually weak and feeling ill for the majority of the year. After an emergency hospital stay in August 2021, doctors began running extensive tests to figure out why she was sick. After reviewing the results of her bone marrow biopsy, Betty was diagnosed with a rare disease called Myelodysplastic Syndrome, or MDS. MDS is also known as pre-leukemia, and the chromosomal abnormality that accompanied the diagnosis put her at a high risk for developing acute myeloid leukemia (AML). The abnormality also indicated that she had approximately 6 months to a year to live if she did not receive any treatment.         

Betty had planned to fight this aggressively. She received her first round of chemo in the hospital in mid December 2021 and began taking oral chemo shortly thereafter. She was supposed to have 4 rounds of chemo, one round per month, and then do another bone marrow biopsy to see if the disease was progressing. She knew her immune system was compromised and took all necessary precautions to protect herself.  However, on December 29th 2021, she caught COVID-19 and was hospitalized again.           


Betty was in the hospital for 5 weeks fighting off the virus. Doctors had trouble keeping her fevers down, and despite finally winning the battle against COVID-19, she immediately came down with another bacterial infection that swelled up her throat and prevented her from talking or swallowing. She suffered so much she was considering palliative care at that point. Even so, she managed to not only recover from the infection but push herself to regain her strength and mobility in PT and OT at the hospital, surpassing her care team's expectations. She was discharged home in early February 2022 and continued PT/OT in home health.       

 Once she was finally out of the hospital, Betty was feeling better than ever. She regained her positive outlook and the motivation to keep working toward her goal of longevity. For three weeks she had energy and felt almost normal. Unfortunately, there was yet another setback. She was hospitalized again at the end of February due to an intestinal blockage. Her MDS prevented her body from producing the white blood cells needed to successfully fight off infections, so she would get sick very easily.           

 Luckily, she was discharged from the hospital just in time to have a weekend visit from her son who she hadn't seen since before the pandemic, her daughter, and her two grandchildren. They discussed her condition and care needs and concluded that the level of care she requires surpassed the capabilities of her companion. Betty and her family decided to work together to try and relocate her to Central Virginia to be near her daughter and continue treatment. As they researched housing, providers, and insurance in Virginia, Betty underwent her second round of chemo.         

Things went downhill quickly. Her blood pressure was continuously low. She could no longer drive. The oncology department had to arrange transportation for her to receive fluids twice in one week. Then, it was back to the hospital with another infection and fever on March 26th. She developed a cough, lost her voice, and lost her ability to swallow again. The doctors feared her throat would swell to the point of airway obstruction. They administered some heavy duty antibiotics and gave her a blood transfusion and she slowly began to improve.         

 The last year has been so very tough on Betty, and her quality of life has suffered immensely. Her oncologist believes her MDS has evolved to AML and thus far has not responded to treatment. Betty is not a candidate for clinical trials due to her chromosomal abnormality and other factors, nor is she a candidate for a bone marrow transplant. Her prognosis is poor. With all this in mind, Betty has made the difficult decision to not pursue further cancer treatment and let the disease run its course.       
 Betty's current goal is to relocate to Virginia to spend the time she has left with her daughter, son in law, and two grandsons. There have been many obstacles thus far but her care team and family are working hard to make this a reality.         

Betty is one of the positive people you will ever meet. She is a two time breast cancer survivor and one of the strongest women ever. Her smile is infectious and she gives the very best hugs, which is a skill she learned from her father, Jerry. She loves classical music and is a former cellist and cantor. Betty loves a good mystery novel, Broadway show tunes, opera, good chocolate, fresh flowers, and binge watching shows such as Downton Abbey and The Gilded Age.

Newest Update

Journal entry by Jennifer Richardson

So, I guess this is  just going to be a blog about me writing down my stream of consciousness thoughts and feelings and memories about Betty on a whim.

The holidays have been difficult for me without my mommy.  From Thanksgiving through my birthday at the end of January, it's a time just brimming with memories of her. The past 15 years or so of reclaiming Thanksgiving as a time for our family to reunite and reconnect, making it our own. Getting up and watching the Macy's Thanksgiving Day parade together, keeping the TV on the National Dog Show in the background while I begin to get engrossed in my cooking projects. Chopping, slicing, sautéing, stirring, steaming ingredients as the different aromas of cooking food began to permeate the air and intermingle with each other. Getting out the fine china (which was Betty's, of course) and holiday tablecloths and setting our tiny dining room table so beautifully. Smiling at each other knowingly, lovingly. Laying on the couch together and holding our full bellies, groaning in unison. Playing board games together. Going to lunch and a movie on Black Friday. It was the most time we spent together as a family all year, and I looked forward to it for 364 days each year.

We went to my father's for Thanksgiving this year, and it was nice to be with my father and step mom and brother, and extremely nice to not have to cook, but it was missing that special element. Still, we spent a nice weekend taking the boys around Washington DC, riding the metro. Betty would have loved to hear about Asher's reaction to the metro, the National Mall and Natural History Museum. I wanted to tell her about the National Children's Museum in its new location. She would take me to the Capital Children's Museum so much when I was a child, in its original location in the old brick nunnery with all of its endless possibilities for make believe. It's amazing what that concept has evolved into now. Mommy would love to have seen it.

..............

Last year, Mom was too sick to come for Thanksgiving so we had a pretty low key meal at home. We made plans to drive down to North Carolina to visit with Betty and Shelly over the weekend after Thanksgiving instead. I bought her some of the smoked turkey we bought from our local BBQ restaurant and she loved it and savored it. She said her father used to smoke turkeys for Thanksgiving and she had missed the taste.

Hanukkah was set to begin the day after our visit, so Betty had planned a pre-Hanukkah celebration at Shelly's house. Shelly had Hanukkah lights adorning his porch rails, which Asher loved. She showered Ash with gifts. We watched Hanukkah themed YouTube videos together. She made Challah French toast. She gave me some of her Christmas decorations from her previous apartment with a sad expression on her face.

A few weeks prior to that visit she had her bone marrow biopsy, and she was just starting to get lab results back on her MyChart. She wasn't scheduled to see her oncologist to review the results for another few weeks, so we were frantically Googling and guessing what the MyChart results must mean. Mom pulled me aside into her "woman cave" for a moment to show me the latest results on her phone, to share how anxious she was about them after she Googled the terms. I tried to be reassuring. I told her,  "We don't have the full picture. We're still waiting for more results. Once all the tests have been analyzed, your oncologist will be able to discuss your diagnosis and treatment thoroughly and we can ask questions and get answers. Right now we don't have enough information to draw any conclusions. Let's try and relax until your appointment. "

Yet, I was Googling the entire car ride home. Googling and worrying and unable to ignore the growing pit in my very pregnant stomach, because I was seeing the writing on the wall. I knew what was coming.

.............

Hanukkah and Christmas are hard for different reasons. Hannukah hurts because my son, Asher, is really just embracing Judaism and it's exciting to watch. He loves the traditions and the stories, the rituals and the community. This would have thrilled Betty. There were things she wanted to see passed on to her grandsons and one was the joy of being brought up in the Jewish faith.

Mom's personal relationship with Judaism was complicated. I never realized how complicated until she let me sit in on a discussion she had with Rabbi Chaplain Heena in May. Mom recounted that despite being raised strictly Jewish, attending Hebrew school at a conservative synagogue, going to Jewish summer camps,  and getting the same Jewish education that her siblings received, many did not believe she was Jewish or accept her as such. She said this not only happened in the Christian community but within her own Jewish community as well, and it really scarred her. She either didn't look Jewish enough or sound Jewish enough or who knows what, but this stigma of not being Jewish enough followed her, haunted her  for her entire life. Even in a North Carolina synagogue, a member questioned her Jewish faith. She felt like she was constantly treated like a outsider within her own community.

Mom didn't avoid or shy away from her faith in private. She seemed to enjoy it and take pride in being a Jew. She loved making Shabbat dinner, reciting the Shema with me at bedtime, celebrating Passover with family or friends and teaching us all the rituals. In private, she embraced her Judaism. She was a proud Jew.

In public it was a different story. Betty didn't talk about it or seek out a Jewish community. When we lived in Germantown, MD she briefly participated in founding a congregation there and she served as the cantor. I remember one service held at night at building next to the local pool. Then we stopped going. I don't know why. I wish I had asked Mom what happened there.

We never belonged to a synagogue. Betty gave me multiple reasons for this. It was too expensive to belong to a synagogue. She didn't want to force religion upon us as children (although she did allow our father to take us to Catholic church every Sunday for so long that I wanted to be baptized at age 8, and it was then she put a stop to church), or she just felt that her version of Judaism was more personally spiritual instead of communal, and yet we attended a Jewish preschool. All of these reasons could have been true. She only attended services on High Holy Days, paying for an expensive ticket to sit in a packed high school auditorium for 4 hours twice a month. Or she would attend services if it was for her family, a wedding, a Bar/Bat Mitzvah, or her sister Barbara's many joyous sermons.

When I was a tween, we moved to a predominantly Jewish area. I had Jewish friends and was suddenly attending all of these Bat Mitzvahs. That's when I started to question our level of Judaism. Like, we were Jewish by blood, by lineage, and we did some rituals at Hanukkah and Passover, but because we didn't practice Judaism like everyone else, because we didn't attend Saturday services or Hebrew school or have Bat/Bar Mitzvahs of our own, we were really Jewish? Certainly not as Jewish as our family and friends around us. When I was 13, it felt like we were pretending to be Jewish, and pretending very badly. We we Jewish Black Sheep.

As a teen, I was angry at my mother for putting me in a situation where I would be othered among the Jewish community. I was angry that I wasn't able to receive the same level of Jewish education my friends and cousins were receiving. I was angry about not knowing how to read or speak  biblical Hebrew, or being familiar with the prayers and having to mouth the words so people might think I knew enough to participate. It's hard enough to be a teenager trying to fit into social situations, but I thought fitting in as a Jew should have been a given. It should not have required any effort. I felt like a fraud. Little did I know, so did she. My mom also felt like a fraud, despite her upbringing and knowledge of Hebrew, of Jewish prayers and traditions. She felt like a fraud, so she avoided most public Jewish settings unless it was absolutely necessary. Now I understand it all.

I followed my own chosen path to my Jewish faith and at 38 years old, I feel like I finally am accepted and belong in a Jewish community of like minded people. None of us are what I would have considered "perfect" Jews. We all come from households of mixed religious beliefs and practices. Many of us have only just started practicing Shabbat in our home because our kids do Shabbat at preschool. We're coming together to learn how Jewish faith and learning can fit into our young families organically and it's really beautiful. There is no expectation of previous knowledge. You just show up together with a willingness to listen, learn, and share. My mom would have loved this community I've found here in Charlottesville.

 

..........

 

I think the other reason my mother felt like a fraud was because she really, really loved Christmas. When she was a child, her paternal grandparents in Florida would put up a tree, and I think her love of the season started there. She was totally swept away by the season, by the Christmas magic. She had a Christmas tree as soon as she had her own place as a young adult out of college. She collected ornaments (almost all with a classical music theme, of course) loved to sing carols and contemporary Christmas songs, loved to decorate for Christmas and cook a nice dinner. She insisted on buying a real tree every year when we were little and she always went the extra mile to make sure Christmas was a magical time for her kids.

One year in second grade, my teacher assigned us a project to come up with a way to show proof to the class that Santa had been in our house - this was before we lived in the predominantly Jewish neighborhood. Betty decided that we would put a paper towel in front of the fireplace. That way, Santa would step on the paper towel as he climbed out of the chimney and leave ashen footprints. So of course, this woman gets a pair of her own boots, sticks them in the fire place ashes, and stomps on the paper towels herself while we slept. Because that's what you do when you're a parent and you're trying to make things magical for your kid. She succeeded. I was stunned when I discovered those footprints.

Another year, Mom bought me a copy of "The Polar Express" which we read until the book jacket was ripped and the pages were doggy eared. On Christmas day when I went to get my stocking, I found a little bell on a red satin ribbon. A bell from Santa's sleigh. It sounded beautiful because I truly believed. I believed in the magic she was creating with all of my heart and soul.

Mom took me to the Kennedy Center to see the ballet perform "The Nutcracker" but my favorite performance she would take me to was "Amahl and the Night Visitors", a beautiful opera about a widow and her son who suffers from a disabilty that makes it difficult for him to walk. The Three Wise Men stop at their house for the night while they are on their journey following the star to meet baby Jesus. The mother was played by a mezzo-soprano and her voice was stunning. My favorite part was always the "This is My Box" scene. In 2012, the Charlottesville Opera performed "Amahl" and I was heartbroken not to be able to attend with my mom but I told her all about it in great detail.

We had some truly beautiful Christmases for many years. After my parents separated, my father would still come over when we opened presents on Christmas Day and continued to do so for a few years until one year he stopped. We moved. My father got his own apartment and his mother, my Grammy, sent him her little 3 ft artificial tree for him to use. My mother continued to buy and decorate trees every year, but the presents moved to my father's place, and so mom eventually ended up alone on Christmas, a holiday that she really loved, with just the tree for company. So she stopped the decorating all together.

After the divorce, my mother dated only Jewish men. Most of them did not share her love of Christmas, of course,  and so she just wasn't motivated to put up decorations, which is totally and completely understandable on all counts. I thought it was interesting that once she got her own place again after breaking up with her boyfriend of 20 years, she went and got Christmas decorations. No tree, but some festive gift boxes and tea light holders. After almost 30 years she felt able to decorate again. I had no idea until she gave me her new decorations when I went to visit her for Hanukkah in North Carolina last year.

When we bought our house in 2015, we finally had the space to have a tree. Of course we bought live ones, and the first person I wanted to share my tree with was Betty. She loved sitting by my Christmas tree each year, enjoying the twinkling lights by the fireplace as we snuggled on the couch watching Downton Abbey. Mom was Christmas joy for me.

So yeah, this is a hard time for me. I usually video chat with her when Asher opens his presents and she wasn't there. She's not there.

I drove by her grave the other day. There is a decent view of  Charlottesville behind the treeline now that the leaves are gone. If you look just past the interstate, you can see the city, the University of Virginia. I like the views on Carter Mountain. I'm happy my mother has a plot there.

Yesterday, I went through her purse and wallet because I wanted to give them away. I'd been putting it off for a long time. My mother's purse seemed like a deeply personal thing to look inside, even though I'd been peering inside her purses since I was a little girl looking for Tic-Tacs. All the feelings bubbled up inside me as I took out her lipstick, her reading glasses, her masks,  her "Go to the Emergency Room if You Run a Fever Over 100.4 F" medical card. Everything felt precious and delicate. I kept her reading glasses because when I look at then I can still imagine them perched on her nose.

2022 was awful. Hoping for a better year in 2023. 

Sending warmth, love, and peace to you all.

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