My personal grief journey- an update on my mom

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Welcome back to Ask Dr.

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Mia podcast.

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Today's a special episode that I debated for a long time whether to record or not because we are getting less academic and more personal in talking about my mom.

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For those of you who do not already know or perhaps heard a previous episode from way back, My mom was diagnosed with ovarian cancer in the fall of 2022 and I wanted to record this episode partly because I know a lot of people are going through grief and that there are things that I have learned through the process that may be helpful for others and also selfishly.

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I don't really want to talk about this over and over and hoping to point to this episode for people who might be interested in hearing about how everything has been going.

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So to review her initial diagnosis, for those of you who don't already know, she was having, my mom lives about an hour and a half away and back in the fall of 2022, she started having some belly discomfort.

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She would wake up in the middle of the night with some belly distension or.

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It wasn't pain, but it was uncomfortable and new.

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When she first told me about it, I thought maybe she was having acid reflux, told her what to get over the counter for possible acid reflux.

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She took those medicines, but it didn't really work.

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And then as time went on over a span of a couple of weeks, we were FaceTiming and She said that her belly was getting a little bit bigger, which when I saw it, I wasn't sure if it was gas or constipation and told her to go see her primary care.

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Unfortunately, I think before she was able to see her primary care physician, she went into the emergency room because her abdomen was getting quite distended and the emergency room saw that she had a lot of ascites or fluid in her belly and at that time it was unclear whether it was a liver process or something else.

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Her initial CT scan was unfortunately not with contrast so they really couldn't see much besides a lot of fluid.

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I went to the hospital and, you know, actually told the hospital list who was taking care of her that my mom is, likely going to self -diagnose herself because she remembered an episode of NPR's People Pharmacy from probably over a decade ago where someone had talked about abdominal distension as a possible symptom for ovarian cancer.

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And I even joke that, you know, if this is not a liver problem, she may have self diagnosed herself, but please don't make me be the one to tell her her diagnosis really wanted to be her daughter, not her doctor.

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For a a lot of how events unfolded, one of which was my mom is very active on my chart and she saw her second CT scan of her abdomen, which was with contrast at four o 'clock in the morning when it was red and she waited till I woke up at six to send me the result.

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And I did end up.

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having to tell her that this was likely ovarian cancer and to wait and see.

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Over that year and a half, two year, almost two year period, she had surgery, a total hysterectomy, debulking of her cancer, chemotherapy, and Initially things were going quite well, but I would say probably over the past six months or so, chemo seemed to have, this is the third round of chemo, chemo seemed to have been causing more side effects than helping.

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She also has Parkinson's disease and...

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after her second hospitalization, which was about probably nine months to a year ago.

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It was really the first time that it was unexpected, not something where she went in for surgery and expected and turned out she was having a medication reaction to Compazine or a nausea medicine that was prescribed after chemo and it made her Parkinson's symptoms much worse.

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Personally, I really felt like I was falling apart after that particular hospitalization because it was the first unexpected hospitalization.

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And at the time I felt a lot of guilt for not being able to be right there with her and didn't know what was going on.

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She was saying that she was stiff and having difficulty walking all of the sudden.

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And maybe it was worse on the left side.

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And so, of course, the nurse triage told her to go to the emergency room because she was possibly having a stroke.

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Thankfully, it wasn't a stroke, but I think I really felt.

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a lot of anticipatory grief in that I could see what was going to happen over time.

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And I was already starting the grieving process of knowing that she's not going to be alive for, you know, decades, like I think we all expected, because her parents lived until their nineties.

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In fact, My mother's mother had just passed away back in February of this year, 2024, at the age of 95.

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So some of my initial emotions were also anger, just that feeling a sense of unfairness that she doesn't get the time in her retirement or the last phase of her life where she could enjoy retirement and have potentially decades for us to improve our relationship over time.

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I lived about 10 years of my life without my parents from the age of two to the age of 12.

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It's one of the...

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most defining periods of my time because I think growing up with my grandparents really contributed to my role as a geriatrician today.

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But when I did come to the United States, I was already 12 and getting to a new country, learning English as a second language.

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and getting to know my parents as people.

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Unfortunately, I think it was a rather contentious couple of years there.

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I still had a lot of anger for how long we were apart.

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And that came out rather often when I was a teenager, but even so until...

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fairly recently.

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So for all of those reasons and how much I felt like my reaction to her hospitalization where she had the medication side effect seemed larger than the actual event, which was a two -day hospitalization and she went right home.

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That was sort of my own to seek additional help.

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And I'm also privileged enough to work with a lot of great counselors, David McLaughorn being one from the previous episode of the memory counseling program at Wake Forest and got connected to a really great counselor who has her own private practice and have been in grief counseling for the past several months.

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Even when I mentioned that to my family, like to my younger brother, I think it came across as a surprise because most people thought that usually grief is what happens after someone passes away.

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But for me, I think because of my job and how much I do see death often in my job.

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I really kind of needed help sooner to be the best advocate and daughter and.

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created the best relationship I could have with her in however long she has left without any regrets.

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other feelings besides anger and helplessness, were the feelings of guilt and, I wanted to to go a little bit deeper into.

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each of those emotions because I think those are common emotions that people feel whenever they lose someone or something that is truly important to them.

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Grief is everywhere.

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We just don't talk about it and it's uncomfortable to talk about.

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The sense of helplessness that I felt, I think I did a lot of self -coaching where I really ask myself, am I truly helpless or am I trying to control a process that I cannot change?

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And I think this is where it's very difficult to know what the alternatives would have been if I did something or didn't do something.

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But I know that despite my best intentions, you know, if I could have been with her 24 hours a day, seven days a week, her disease process is still going to change over time because no one lives forever.

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So I think asking myself the question of am I trying to control something that I actually cannot change really helped sorting through what are things within my power to do and what are things that are not within my control and not to fight the things that I cannot control because I would just be arguing with reality which I would lose 100 % of the time.

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the sense of anger, I think was relatively short lived.

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that sense of unfairness, of the potential decades that she could have had and, you know, she wants to watch my children grow up and I know that's not going to happen.

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And.

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My husband and I were actually watching, or I wasn't really watching, I was just on a catch reading, but sort of watching Shogun, which for those of you who don't know, it's a show that's set in Japan in the ancient times, and most of it was in Japanese with subtitles.

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But one thing that, one phrase that really resonated for both me and my husband, who's a palliative care physician, is the Japanese approach to death, where death is very much a part of life.

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In fact, I think a phrase that they said was that a flower is not a flower if it does not fall.

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And I thought of that sentence a lot.

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Anytime I thought, well, this is really not fair in the sense that we all die and we really don't know when it is going to happen.

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And I've also lost a close friend when we were 21 to a drunk driver.

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So I think I...

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knew from an early age that life is not supposed to be fair.

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There's no one has promised that life is fair.

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And like a flower, we all fall.

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And when a flower is dying, it's really oftentimes not pretty when the petals fall off or shrink and no matter how much you change the water or give flower food, it's not going to get back to when it was in full bloom.

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Somehow that personally helps me to normalize a process that a lot of people are going through, but it feels very lonely.

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It feels like you're the only one going through it, even if intellectually, you know a lot of other people are going through it.

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And then finally, I wanted to talk about guilt, which is different from shame.

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Guilt is when I do something that does not align with my values versus shame is if I'm a bad, if I think I'm a bad person.

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Don't think I've ever felt shame in this process of grieving.

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but I've definitely felt a lot of guilt.

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And sometimes there were both real guilt and fake guilt.

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By fake guilt, I mean when I do something that does not align with someone else's or potentially society's values and expectations.

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One recent example that I really struggled with, was going on a work conference right around the time when she was debating to enroll in hospice.

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And this was only about two weeks ago, so fairly recent.

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It was a work conference that I had prepared for months.

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I was giving a talk with some residency friends and colleagues and a poster.

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It wasn't a conference that I was just going for the sake of going, although there's nothing wrong with that.

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And it was not only happening at the time where my mom's medical status was changing on a daily, but I was also recovering from a fairly prolonged viral illness.

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And my husband was sick before that, and my son was sick.

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during that and it felt like we never got to a point of normalcy and I was going to be away for three days.

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And I really had to ask myself, you know, should I go to this conference or not?

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And one question that helps me, distinguish real guilt from fake guilt is, no, am I doing this to actually make her feel better or to make myself feel less guilty?

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And I felt like sitting by her bed and talking with her would make myself feel less guilty.

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But she actually wouldn't want that very much because she wouldn't, one thing that she hates more than anything is feeling like she's a burden.

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And she doesn't want to take me away from something that I really think is important because of her.

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And I'm also grateful for my dad and my brother who both live locally and live with her, not my brother, but and that I'm not the primary caregiver.

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So I ended up deciding to go on the trip and it was, it turned out great.

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And I learned about guilt and fake guilt during that conference actually.

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And.

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and journaled about the decision and how I was feeling and how it actually ended up being quite a mental break for myself.

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I ended up cutting the trip short to come home early, but it was still a worthwhile thing for me to go.

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I think if I had spent that time sitting with her, I think I would have...

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not necessarily made her situation better, but would have walked away with a sense of possibly regret.

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So the last thing, well, the second to last thing I wanted to talk about is how to process grief or really how to process any emotion.

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And this is one that I think I'm continually practicing because it's not something that comes naturally to me or for most of my life.

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It's not something that I've been.

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taught until probably within the past two or three years, where, you know, anytime that there is an emotion that is unpleasant, grief being one of them, instead of trying to push it away or compartmentalize it, which I would say is probably my default response, I would try to notice it in my body and describe it to myself mentally how it feels.

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And oftentimes it feels like a heaviness in my chest and in my throat.

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And sometimes I would cry, other times I can't cry.

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And when I do sit in that discomfort of watching my grief in my body, it actually goes away after a few minutes.

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And it comes back, but it doesn't actually last as long as I think it is, or it's not as uncomfortable as I initially think it is.

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And other things that have helped me and I'm still using to help me process the grief is, lot of journaling.

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I've always been someone who journal, exercise, which is really great for anger and angry rowing.

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I have a rowing machine in our basement that has really helped in many, many instances of working out the anger.

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Meditation, I went on it.

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silent meditation for a few days recently for my birthday and learned more techniques that have been better in terms of incorporating into my daily every other day habit.

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That has also helped with sleep because otherwise I think my mind is oftentimes still processing everything.

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in the middle of the night and have a hard time going back to sleep.

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If I wake up at two or three a walking in nature and actually listening to what I call mountain songs really make me get in touch with how I'm feeling and fills my bucket in terms of energy and...

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and small moments of joy.

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So to summarize for folks, my mom is now currently in hospice and both the hospice nurse and I think she has weeks left.

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Not sure how many weeks, but also not six months.

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And I am in the...

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messy middle of everything even if I even though I have done quite a lot in terms of processing everything that's happening.

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And to summarize a couple of tips for those of you who might be handling loss of your own.

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One thing that I have to continually remind myself is that there's really no right way to grieve.

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And when I don't cry, Sometimes I ask myself, I wonder if I'm doing something wrong.

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And when I do cry, sometimes it feels like I can't stop.

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But I have to continually remind myself that there's no right way to grieve and there's no timeline to grieve.

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And I'm sure as the time goes on, I will be having...

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more intense waves of grief, grieving, and probably will be grieving for the rest of my life in some way or another.

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And Other times I find that I have moments of joy and grief in the exact same moment, which oftentimes is more emotional than having feeling those separately.

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And just a small example of driving back home.

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After visiting her over the past couple of days, I was noticing the beautiful sunset on the highway and the light that shades the clouds and this pale pastel pink and blue and The sun was setting to my left and I was thinking that...

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I wouldn't be watching these sunsets with her for that much longer and...

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It's those small moments where I see her with my kids or I want to share with her something that's beautiful and exciting.

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She won't be there, but we both talked about how we both believe that one's soul is still connected to the people they love, even after the body is no longer there.

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So.

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I think I'll still be able to share those moments with her, even if it's in my mind.

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But...

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I don't know if I'm just believing that because that's the more comforting way to think about the afterlife.

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But I'm glad that she's not.

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afraid of dying and I'm not afraid of her dying and for that you know I'm grateful that she's not in pain or in fear and that you know I am proud of using my knowledge of Being a physician and knowing the healthcare system to help my parents navigate things as best as they could without me physically being there.

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And I may or may not talk more about this in the future, but this is way more of a vulnerable episode than typically.

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But.

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I hope some of what I've shared may be helpful for you and I am okay.

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Everything is going to be okay in there.

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And it's just part of living life.

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So I appreciate you listening.

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And if this is at all helpful to you or people in your life, please feel free to share.

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Thank you and talk to you next time.