The Diagnosis

Women of a Certain Age

Today marks the year anniversary of my mother receiving her diagnosis, and I thought I’d write out some of the things that we experienced during that time. She has since passed, but I felt the need to reflect on our experience a year later. The story is pretty long, but I’ve decided to write a continuation and will post in a few days.

In December 2020, I talked with my mother, and she told me that she was in pain. Due to Covid, I was on high alert because she was elderly and lived in Brooklyn alone. It looked like covid wouldn’t allow me to make my annual Christmas in New York visit. My mother always had a quality of life and stayed on the go. Unfortunately, covid stopped her in her tracks, and she was relegated to her apartment for however long this pandemic would last. We would talk 5 – 6 times a week, either by video chat or phone. We had a few Zoom calls, which were the only times I could see her clearly, and I noticed she had lost some weight, but I chalked it up to her being home and not eating like she was used to eating, plus, she said she didn’t have much of an appetite. During one of our video chats, I started to notice that more and more, she was in her bed with low lighting. During one of our phone conversations, she told me that she had lost forty pounds in six months. I asked her what her physician said, and he said that she’s at her desired weight for her age and height, but it didn’t sit right with me, and I told her I would be there within the week. She said, “no, because Governor Cuomo said we should not travel during the pandemic.” I told her that I wasn’t concerned with what Governor Cuomo said with all due respect because I needed to put eyes on her and know that she was okay for my peace of mind. I booked a roundtrip flight for two weeks, and I made sure I was within the guidelines of the CDC.

I arrived at her apartment on December 17, 2020, and when I looked at her, she appeared sicker than she had led me to believe. Her stomach looked like a beach ball, and she was starting to look gaunt. The next few nights were of her moaning due to the excruciating pain that she was in, but she was enduring the pain. The firecracker that I was used to her being was almost nonexistent. I asked her to make an appointment with her primary care physician because we needed some answers, I needed some answers. He was able to get her in the following week, and we went to have a sit-down. He told me the same thing that he had told her. The CT scan came back and said she had a hernia which was why her stomach was so big, and she also had gastritis. He said that he had put in a request to have another scan done, but it wasn’t until January. We went back to her apartment, and her pain persisted. It was approximately two weeks before her next doctor visit, and I suggested that we go to the Emergency room because she was moaning through the night, and it was heartbreaking to hear like that. One night it was so bad that I told her that we were going right now. She resisted and said it was too dark to go because if they decided to keep her, she didn’t want me walking back home by myself (it was one block away, but a mother will mother). I obliged her stall tactic, but she promised me that I could take her in the morning. 

Morning time came, and we eventually made our way over to the emergency room. They wouldn’t allow me to stay long with her because of covid, but they did give me a number to check in on her periodically. As I continued to call, the nursing staff would update me on her status. They took some tests and did find something, but they weren’t 100% clear what it was and wanted to keep her and run more tests. Due to the lack of hospital beds, she had to wait in the emergency room until one came available. She eventually received one within 24 hours of her arrival. I called as much as I could without trying to aggravate the hospital staff. When she got to her room, I would take my computer and sit with her in her room and work from her hospital room until they said that I’d have to leave. At that particular time, she was in a room by herself, which gave me a little more freedom. Eventually, they released her because they said it would take about two weeks for her test results to come back, and there was no reason for her to wait in the hospital. They scheduled a follow-up appointment for January 21, 2021, and the wait was a stretch. We went back home, and her pain increased. She had fluid on her stomach, and we’d have to go back and forth to the hospital for her to have a centesis done periodically. During my yearly visits, I wouldn’t usually stay in her bedroom, but this time she seemed to have comfort when I was in there with her. It appeared that she was dwindling before my eyes. I tried to see if changing her diet would make a difference during that time. She did get her appetite back, but she couldn’t eat all the things she used to eat. Now, I’m not a cook, so it was trial and error, but I made sure she had some pretty decent meals. She enjoyed the majority of them. A handful of them, she said they were too healthy! We’d laugh because that was her way of telling me she didn’t like them. To know my mother, you would know she was brutally honest, but she didn’t want to hurt my feelings by saying they didn’t taste good. One time I overheard her on the phone talking to someone, and she said, “she’s trying to kill me with all this healthy food.” It made me chuckle.

We returned for her test results on January 21, 2021. Due to the uncertainty, it felt like we were both walking the Green Mile. We walked into SUNY Downstate Medical Center to get the results. A team of four doctors came into the room and told us that she had stage IV ovarian cancer. Talk about a gut punch! I looked over at my mother, and I could see the look of defeat on her face. Finally, she received an answer as to why she was in so much pain. Her primary care physician had diagnosed her with gastritis and a hernia. I’ll never forget the look of defeat on her face. She didn’t cry. She just held her head down and nodded as the team of doctors gave her some options. She was adamant that she didn’t want chemo, so we told the doctors that was a no. We received all the information and said we would discuss it when we returned to her apartment. We walked across the street like zombies in total shock. When we returned to her apartment, we sat down, and I asked her how did she feel? (To be continued.)

Happy New Year!!

Women of a Certain Age
Time for reflection

Each year I try to think of a word that I’d like to shape my expectations for the coming new year. 2021 was supposed to be BLISS! Let me tell you that it was anything but BLISS! The biggest challenge I faced in 2021 was the passing of my mother. I wrote down my experience during her last days, and every time I tried to come back and post about it, I just couldn’t. The ability to put words into text was challenging. Since my mother’s passing, I’ve had random moments of breakdown. My community has been an integral part of my mourning process. There are unexpected moments when I’ll be someplace, and I’ll see something that reminds me of her, and it will evoke an emotion; smiling, laughter or crying, sometimes all three. Just the other day, a tv show that mother used to watch was returning from hiatus, and I thought I’d call and let her know about it, and then it hit me that she’s no longer here in the physical. I was blessed to be able to take care of her during her last days, but at the same time, it was mentally exhausting. To watch anyone die takes a toll on you, but it hits different when it’s a parent who was larger than life. During that short season of her illness, I went through many emotions. I was able to talk to her about her life experiences, and we laughed and cried during our time together. When I was a child, my mother wasn’t always present in my life. We started repairing our relationship about 25 years ago when she returned. It took a lot of healing and vulnerability. I would have never imagined that I would become her caregiver, and neither did she. At some point, I’ll post some of the conversations that we had, and they were definitely eye-opening. I learned more about her and myself during that seemingly short time. With that being said, I wanted to post before months slip away and the new year has only a few months left. Winter is always a reflective time, and I’m constantly learning and reflecting. I know this will take time, and I’m not in a rush because it will be at my pace. I learned so much during my mother’s illness, and I wanted to share some simple things that became very clear in 2021. 

  1. Health is wealth, and should be a priority because no amount of money can compensate. 
  2. Be present in the moment because time is a commodity.
  3. Make sure you curate a great community of people, they can make the difference in your every day life. 
  4. Find something that makes you happy, it could be as simple as a walk in the park or eating a good meal, or a simple treat.  
  5. Reach out to those that you had been meaning to talk to, but haven’t spoken to in awhile. Time waits for no one.

Until we read again!!!

The Journey Begins

Women of a Certain Age
Photo by Pixabay on Pexels.com

We have started to look for alternatives, but my mother’s pain has intensified. I ordered some books online about diet and juicing to see if this will help during this journey while trying to buy time. She’ll be 71 in a couple of days, and I wanted her to have a great birthday with hopes to take her mind off the pain. The weather wasn’t that great, so we decided to stay home and spend time together. I’m learning that time is precious during moments like these, and I had decided to stay with her no matter how much time she has. I told her that I’d either resign or take FMLA if necessary. The doctors said that family members don’t unite to help an aging or sick parent, and they told them that they’d have to figure it out. I found that shocking because I thought that’s what you did when the family needed you. So even though my mom was in and out of my life, this was a no-brainer. 

Initially, my mother decided she didn’t want chemo but changed her mind in a matter of hours. The doctors say that it’s not going to give my mother much time. Still, with or without the chemo, all she could think of is her pain with hopes that it would stop. I’ve heard horrible things about chemo, but to listen to someone moan in pain all night is heartbreaking. Now add your mother to the equation, and it’s multiplied. To me, it seems that she’d have more quality of life without it, but she’s hoping that the chemo will work a miracle and kill all of cancer.  Over the next few hours, we find out that she also has nodules in her lungs which are also cancerous cells. I told her she has my support either way. Ideally, quality of life is more important than quantity if that quantity doesn’t provide mobility, but then again, I’m not the one going through this pain as she has been.

My mother has an appointment to start her pre-chemo briefing to let her know what to expect. According to the doctors, the odds are dismal. She has a good team of doctors, and I appreciate everything they do, but I would not want their job. Dealing with death has to be challenging. I’d imagine that you can become somewhat desensitized, and if you don’t, there has to be some form of therapy to decompress. That has to be painful. I’m dealing with one person (my mother). How do you do this daily? Her odds are dismal, and as a believer, I’m aware that the doctors don’t know 100%, and they’re offering their guesstimates at best. The challenge with that is that it’s a person’s life, and while they may go home and reflect, the patient has to sit with the decisions they offer.  

Fast forward to some days later, and we had a follow-up visit with the doctors to get an update on my mother’s status. In the process, she has to get a paracentesis which means that she has fluid on her stomach, and the doctors had to drain it periodically. The goal is to drain when necessary, but this would stop once the chemo shrinks the massive tumor that’s sitting on her pelvis. They emptied her stomach, and it was excruciating for her, but the fluid keeps coming back in due to the cancerous cells. According to the doctors, the chemo will add a few more months to their projected period of her life on earth. As they’re sharing their prognosis, I think that a few months doesn’t seem worth it, but it’s her choice. I told her that we could move out of New York, where she can see something different. She’s lived here all her life and had no desire to go anywhere else. She did get to experience my travels abroad and made a few visits to where I was over the years. As a believer, I know that God is bigger than this, and I know that illness is nothing to him. I am hoping/praying for a miracle, but I struggle with the reality of her condition. Psalm 90:10 says, “Seventy years are given to us! Some even live to eighty. But even the best years are filled with pain and trouble; soon they disappear, and we fly away.” My mother has had her fair share of pain and trouble, and as her child, so have I. 

I don’t want to be selfish, but I don’t want her to leave me. I find myself praying, “dear lord, please don’t take my mother, not now, please.” I don’t want her to be in pain, and I don’t want to be selfish by asking you to keep her here. I love my mother, and I want her to live out her life in fullness. Ideally, I would have the finances to take care of her, and she’d be able to live out her time in peace and pain-free because I realize that those without money don’t have many choices. The thought of my mother not being here is unthinkable to me, and I keep thinking about when that day will come, whether that means soon or years from now. I don’t want to imagine being without her.  

These are the things that women of a certain age (Gen X) experience. Now don’t get me wrong, many have lost parents at earlier periods. My grandmother died when my mother was 31, so the way I see it, I had the privilege of having an extra 20 years. My father died when I was 20, which was a significant blow because he was my everything. Neither of my parents was present when I was a child. They were dealing with their addictions and chose not to raise me. I watched my father’s addiction take over his life, and as strong as he was, he couldn’t kick the habit. At one point, he had gotten his life together, but I believe that once he was diagnosed with a terminal illness, he fell back into the pit that he had successfully escaped years prior. He was the first in our family to receive his master’s degree. I wish I knew what was going through his mind during that time, and he was my hero. 

Growing up, I lived with my maternal grandmother, Madear. Once she passed, I lived with my mother’s sister, who had taken me in when I was twelve. My maternal grandmother suffered from her demons and took a lot of her pain out on me. After years of counseling, I’m aware that she was sick, but it doesn’t make it right. I’ve been able to walk out forgiveness and continue as I unpack my issues of life. My mother and I reconnected when I was in college. She has been back in my life for over 26 years. Before that, she was in and out, but present ever since. The first couple of years of her return was rocky because she was still using. Our experiences have brought us here, and I’m glad that I’ve been able to process all of these past pains because I’m not sure I would’ve been able to be here, mentally, physically, and emotionally. 

We have been able to re-establish a relationship over the years and have had a pretty good ride. A few times, the doctor said r, “look, you took care of your daughter when she was a kid, now it’s her time to take care of you,” I’d often caught a glimpse of my mother’s face when they said that, and I’d instinctively say, “whether you did or did not, I’m here for you.” I feel like the grieving has already started, and she’s still alive. I’m not sure how to shift, but I reached out to a friend of a friend who had a similar experience with her mother, who lived nine years after her diagnosis. I have hope, but there is a lingering “but” as we make pending appointments for her to start her chemo process. I don’t know what to expect because this is new terrain, neither one of us has been here before. My mother had some experience when my aunt was diagnosed with cancer, but this is my first time experiencing this up close and personal. I plan to seek more options and pray for an answer while I’m doing my research. Her first cycle is happening within a week. So until next time, here’s hoping for a positive change.

Trials and tribulations

Women of a Certain Age

In January 2021, my mother and I walked into a Brooklyn hospital to get biopsy results that she had a couple of weeks prior. Months prior, she had been diagnosed with acute gastritis and a hernia in her stomach that made her look like she was giving birth at any moment. As the pain continued to increase, I suggested that we go to an emergency room to see if she could get relief. While there, they decided to take an EKG and a CT Scan. The results came back that there was a mass on her pelvis, and they wanted to admit her to take more tests. She was there for five days. They took a biopsy and told us that they would be following up with the results. It took two weeks due to Covid. When we returned, they said to us that the best option to treat this cancer is chemo. I sat there with a pensive look because the doctor casually mentioned cancer and continued to speak on my mother’s condition. I stopped her in the middle of her spiel and said, “so it is cancer?” Even though she didn’t say that’s what it was initially, and it was evident by the way she threw it into the conversation, but for some reason, I wanted her to say, “yes, she has cancer.” I just needed that clarity so we wouldn’t leave with any foggy brain of what was going on. It was clear, and it was cancer.

At that point, I could tell my mom had checked out. She started playing with her nails which I’d realize was a go-to coping mechanism when she’d receive bad news. The doctor sounded like Charlie Brown’s teacher Miss Othmar. They continued to tell us that they believed she has six months to 1 year without any treatment, and with chemo, it would buy her a few extra months (this was due to the aggressiveness of cancer.) There weren’t many options 1. She could do chemo with hopes to shrink or remove the cancer cells. 2. She could ride it out and let nature take its course. 3. She could chance them going in and removing the tumor around her uterus, but that would still leave the other cancer cells in her body that had taken up residence. 

What do you do with that type of news? How do you console someone during this time? My mother is a baby boomer, and there’s not much emotion with many of them. My grandmother raised them to be tough, which meant you don’t show weakness, and crying is considered weak. As the doctors are giving us the run down, she hangs her head low, and only when she gives a slight nod, I know that she’s listening. We left the hospital with the intent of her starting chemo within the next few weeks. By the time we returned to the apartment and had a moment to reflect, she had changed her mind. Her thoughts were on moving to Atlanta and spending her time with her children and grandbabies. At this moment, I realize that time is of the essence, and I need to move fast so she can have as much time as possible.

My father passed when I was 20. I am now in my 50s. I don’t know what to expect, and I reach out to my tribe and share the news. They comfort me and tell me that they’ll be praying for us. I spend most of my day crying, trying not to tear up around her because I don’t want her to focus on me. I told her that it’s okay to emote, but she has trouble doing so in front of me. I later found out that she was doing it silently in her bedroom. I find it hard to do so in front of her because I don’t want her to worry. We have the same concern (each other.) She told me she didn’t want me to cry because it would be hard for her to take it, and she would worry.

Hence, I oblige and do my crying in silence. I am a believer. I pray and ask for guidance because even though I’ve experienced this type of loss before, it was sudden death. I don’t know what to expect, and I reach out to someone who has had a similar experience. She said that it wasn’t until after her mom passed (9 years after her diagnosis) that she realized that she was living in fear, waiting to receive a call from her siblings telling her that her mother was gone. She said that she didn’t know how much of her time she spent doing that, and it took away from her life. I’m trying not to do that, but this is the hardest thing I’ve had to walk through so far. I’m lost and confused. I don’t know how to navigate through this because it’s new. Where do I go from here?