Tag: family

Desperately Need a Blue Sky Holiday

Wendy K.Leave a comment

3 weeks ago after we got off the video call with my mom’s new oncologist, I called my mom’s cardiologist to request clearance from him for her 6/22/26 scheduled surgery.

I called every week and left messages to follow up on the status. I left a voicemail message with the answering service on Monday night and Tuesday morning, one of the office staff returned my call. They said they received my message but was unclear what I had called in to follow up on. Soooo frustrating! I explain the need for the cardiologist’s clearance for my mom’s upcoming surgery and after digging around in my mom’s file, they tell me that her cardiologist will need to see her and they have been calling my mom to try and schedule an appointment. I understand why they would try my mom first, but I have personally called in every week for the past 3 weeks, why couldn’t they call my number!!!

They put us on his schedule for the next day (today) so I rearranged my work schedule to accommodate this last minute appointment. We show up today and her cardiologist says “I don’t have the test results. Where did she have it done? I will have to review the test results.”

First of all, my mom has been to TWO follow up cardiologist appointments since she was released from the hospital where she received her CT Angiography and Cardiac Catheterization (1/26/26 & 2/23/26) and we discussed the tests and the results during both of those visits!

Second of all, both myself and the oncologist office have been requesting surgery clearance for my mom for the past 3 weeks!

Why are we just now finding out that you don’t have test results?!! Make it make sense, PLEASE!

I was so annoyed, and I’m sure that’s what prompted my mom’s unease on our drive home but my mood went from bad to worse.

My mom started questioning what the surgery was for, why she even had a cardiologist. All this confusion but she rolls her eyes and vehemently disagrees when I tell her to check “issues with memory” on a form she is filling out at her oncologist appointment yesterday. I was triggered! I started lecturing her about what the oncologist had drawn for her and explained, she replied with, I didn’t understand what she was saying. No one talks to me, they only talk to you. We went back and forth, and she got out of the car after I pulled into the driveway and our conversation ended abruptly.

I asked Gemini for advice and got this very helpful response “I am so sorry you and your mom are going through this. Balancing the weight of a serious cancer diagnosis with cognitive changes is incredibly heavy, and it is completely understandable that she feels out of control. When memory slips, the world can feel like it’s happening to you rather than with you, and her desire to be spoken to directly is a deeply human need for dignity.”

I am going to do a better job of making sure her doctors talk more directly to her during her appointments. I also updated a timeline document to print out for my mom to reference. I created the document earlier this year and honestly seeing it all laid out was so overwhelming. It’s hard to comprehend what she has endured, what life has been like for our family for the past 10 months. It made me want to SCREAM cry.

I know our story is not unique. I’m sure every family who has dealt with cancer has suffered similar experiences. But seeing it all laid out is so incredibly surreal. It’s like, we lived it, I know we did, but I don’t know HOW we did it?!? And it’s still not over.

Heartless & Traumatized

Wendy K.Leave a comment

If you have been reading my posts, you may recall my “Bad Guy” post from 4/28/26 when I mentioned this crazy thought:

“Uninstalling the LibreLinkUp app and just live in blissful ignorance about my mom’s blood sugar.”

Well, I did UNINSTALL the app. Jon agreed to keep the LibreLinkUp app installed on his phone so he could monitor his dad and my mom (both diabetics). It was great, until it wasn’t.

On the morning of Friday, 5/15/2026, for the THIRD time this year, we called the paramedics for my mom and she was taken to the ER. A second hypoglycemic episode.

The ABSOLUTE WORST part of this incident was that my 4 year old son is the one who discovered my mom in this altered state.

Jon had left for a breakfast meeting and I had left to take my 13 year old son to school. My 4 year old woke up around 7am and went to see his Ahma in her room. He found her acting strange and non-responsive. He ran upstairs to tell his Aiyee and big sister, “something is wrong with Ahma, call an ambulance!”

My 24 year old daughter called me. The way she described my mom’s behavior, I assumed my mom was having another low blood sugar incident. I told her to get some orange juice for my mom and I rushed home. I was able to get my mom to drink some of the orange juice, feed her some milk chocolate, and keep her safe on her bed while we waited for the paramedics to arrive.

I called Jon and asked what her blood sugar was, he said it had stopped registering around midnight and sent me this screenshot. UGH!

Before my mom’s phone was turned back on

We thought her sensor had expired but it turned out that she turned her phone off because she did not want to hear notifications beeping while she was sleeping. I HAVE NO WORDS!!! When I turned it back on, this is what registered on her glucose monitor!

After my mom’s phone was turned back on

So many expletives were running through my mind. I had a lot of things to be annoyed and upset about but honestly, I was just NUMB.

The next paragraph probably makes me seem heartless but the harsh reality is that I am becoming desensitized. I knew what to expect and what was next. The paramedics loaded my mom up in the ambulance and I carried on with my day. I kept my CT scan appointment and handled that before Jon and I even went to the ER. I knew it would be a couple of hours before she got settled. We checked in with her and made sure she was ok but we didn’t wait at the hospital with her. I didn’t see a point just staring at her sleeping. After she was discharged from the ER, we took her to her labwork appointment. She had required prep work for her biopsy procedure scheduled for the following Wednesday, 5/20/26. Everything returned back to status quo quickly, everything EXCEPT my 4 year old.

He was (and still is) TRAUMATIZED! He is constantly on edge. Always concerned. There has not been a single day since 5/15 that we have not heard him utter some form of these words, multiple times a day.

“I’m scared for Ahma, she is sick.”

“I am worried about Ahma”

“Daddy, check Ahma’s blood sugar”

“Daddy, check granddad’s blood sugar”

“Mommy, come with me to check on Ahma”

“Ahma, you need to eat something”

“Ahma, you need to take your medicine”

“I’m scared”

No matter how much my mom tries to convince him that she’s not sick, he continues to worry. My son saved my mom’s life and has witnessed things that a child cannot easily process or understand. I know these experiences make him into a caring human but my heart is so very heavy with sadness for my little empathetic boy.

Growing Up is Overrated

Wendy K.Leave a comment

When you’re a kid, you can’t wait to grow up to be in charge. It’s a shame that the price you pay for all that independence is overwhelming responsibility and the byproducts of getting OLD.

Sure, you can stay out as late as you want but once you hit your mid 40s, your vision turns to crap, your metabolism tanks, and the only bottles popping, are bottles of ibuprofen and prescription pills.

Last month (5/8/26), I finally took care of having several legal documents for my mom and sister signed and notarized.

  • Durable Power of Attorney
  • Medical Power of Attorney
  • HIPAA Authorization
  • Advance Directive
  • Last Will in Testament

I am grateful for my friend who is a notary. She scheduled time to come to our house to check off this morbidly uncomfortable task that has been lurking on my to do list for months!

That same day, after all the documents were signed, I rushed my sister to a doctor appointment. We established my sister as a patient with a new doctor because the prior one was not taking my requests for genetic testing seriously. To simplify things, my sister and mom are now patients at the same practice. I can login to a patient portal and communicate with both their medical teams. This is WINNING in your 40s!

These last few months have been filled with a barrage of medical appointments for my mom, my sister, & myself. Dentist appointments, well-women exams, mammograms, blood work, a biopsy procedure, oncologist appointments, an urgent care visit, CT scans, PET scans, ultrasounds, and on and on. Unfortunately, in the month of June we have even more excitement to brave:

– a cardiologist appointment for me

– genetic counseling / testing for both my sister and I

– physical for my sister

– additional dentist appointments for my mom and sister

– and the icing on the cake, a 2-3 hour full hysterectomy and omentum surgery for my mom.

Why surgery?!? Well the biopsy (5/20/26) of the mass identified in my mom’s PET scan was not cancerous. Ironically it is probably inflammation or a collection of dead cells (scar tissue) caused by the chemotherapy. As planned, after my mom finished her chemo sessions, her oncologist referred her to a gynecologic oncologist. We had a video conference with this new doctor on 5/27/26, and she recommended surgery for my mom. Her cardiologist will have to give his approval but my mom’s surgery is scheduled for 6/22/26.

My mom is understandably freaked out and is considering not going through with the surgery. Honestly, I’m not sure if her cardiologist will even clear her for it. I called her cardiologist 3 times over the past 3 weeks and have been unable to get a green light from him. My mom has two oncologist appointments this week, Tuesday with her new doctor and Thursday with her original doctor. I encouraged her to share her concerns about surgery and next steps with them. We should know more after this week.

Toys “R” Us had the right idea, I don’t wanna grow up!

Food Fight

Wendy K.Leave a comment

I wonder if other families going through cancer have the same frustrations with food or if this is just a ME thing.

As long as I can remember, food has always been such an important part of my life. Food has always equaled love for me. When I was a kid, I remember my dad coming to pick me and my sister up to take us to McDonald’s on the weekends before we moved out of state (California to Texas). When we would visit him for Spring Break, Winter Break, & Summer vacation, we had multi-dish dinners every night and he would keep his house stocked with all our favorite quick prep microwave foods, snacks, & drinks to help ourselves to when he was at work. My mom worked full-time but still managed to cook dinner for us every night. She always found some way to efficiently create balanced meals with carbs, protein, & vegetables all in one pot. And I have fond memories of weekend trips to Chinatown (Richardson, TX) to enjoy lunch with my mom and sister. Every one of our family / friend get togethers centered around food and lots of it! To this day, if I were to call my mom or dad on the phone, one of the first questions I would be asked is, “have you eaten?” 🥰

The unhealthy side of my relationship with food involved being forced to clean my plate and never wasting food. It led to bad habits of over overeating that I honestly still struggle with as an adult. I am also very conscientious of wasting food and have a difficult time throwing leftovers away and cleaning not just my own plate but my family’s plates too. I was also cursed with digestive challenges. If I wasn’t throwing up from motion sickness or drinking carbonated beverages then I was struggling with constipation. I avoided sodas as a kid and I am still obsessed with getting enough fiber every day.

When I became a mom, my biggest struggle with my children was food related. While my best friend focused on sleep training her children, I was obsessed with their food intake. Her children slept independently within months, while my two youngest still have terrible sleep habits. I was always willing to sacrifice my own sleep, but I was never willing to compromise on making sure they ate balanced meals.

I guess knowing all this about myself, I shouldn’t be surprised that this is the one area that is the most contentious for my mom and I.

Her lack of an appetite, the amount of food, and nutritional quality she intakes has consumed so much of my daily interactions with my mom. I know that both of us are beyond frustrated with each other.

She had her fifth chemotherapy session this last Friday, 2/20/26 and these are the high/low glucose alerts from Friday thru Sunday morning.

We both feel out of control for very different reasons. She doesn’t understand why after being able to control and manage her diabetes for about 30 years independently it has become so challenging now. I feel out of control because she is 73 years old and “she knows her body” better than me and the doctors.

Here’s what I do know, most cancer patients do not actually die from the cancer. At least three people have told me that their loved ones died from pneumonia, and two people have told me their loved ones fell and suffered fatal head trauma.

My mom is scheduled to have her last chemo infusion mid-March and then she will be in “maintenance”. But it’s hard not to be doom and gloom, knowing the dangers of a weakened immune system and the fact that she also has three severely blocked heart valves.

What if…🥺

There are too many things to worry about for this pessimist. My best friend reminds me to consider how I want to remember my relationship with my mom. I know I don’t want our last interactions to be fraught with arguments. I need the strength to keep my mouth shut and letting things be if there is no immediate danger. She has insulin to combat the highs and glucose gummies to deal with the lows. It is what it is.

Resetting The Year

Wendy K.Leave a comment

Tuesday, February 17, 2006 was Lunar New Year! Honestly, January 2026 started off so stressful that I was glad for a redo! I’m officially counting Lunar New Year as the start of our 2026, bidding farewell to all the negative experiences and welcoming positive energy and good vibes!

Year of the Horse

On Lunar New Year’s Eve and Lunar New Year’s Day, I made sure to wear red, down to my shoes! Red symbolizes “good fortune, happiness, vitality, and the warding off of evil spirits”.

My mom and I decorated the house with pops of red Sunday night and we hosted New Year’s Eve dinner on Monday. It was good to see my mom excited to celebrate. I outsourced about 80% of our dinner, and it was the best decision!

My mom really wanted to cook the dishes herself but I told her it would be easier if we just bought prepared food. We drove to Chinatown the Saturday before and purchased duck, chicken, bbq pork, roast pork, dumplings, sticky rice, steamed buns, shumai, & sticky rice cake.

On Monday, I left work early so I could get home to heat up all our prepared food and cook a few additional dishes (rice noodles, cauliflower, & broccoli).

My mom came into the kitchen to help but after a little bit, she said she was tired and wanted to take a nap. She ate 2 shumai dumplings before going to her room and that ended up being the only thing she ate the rest of the evening. This made me sad but I was happy that she had the energy to be physically present with us the entire evening even if she didn’t eat. She did enjoy the food as leftovers the rest of the week.

Today, my mom had an appointment with her oncologist. He shared the good news that her CA-125 level was now at 44 (down from over 200). This means that she does appear to be responsive to the treatment so she will continue moving forward with her original treatment plan. Her fifth treatment is tomorrow and if all goes well, the sixth and final treatment should occur on March 13th! She will still have maintenance every 3 weeks to suppress new cancer growth but it will not be chemotherapy and it should be easier on her body.

Obviously a lot can happen between chemo infusion treatments, but we are going to celebrate the positive news and continue to take it one day at a time.

I may consider wearing red every single day this year, ha!

Side story: In Chinatown, some establishments are CASH ONLY. This past Saturday, I forgot to bring cash with me. I had some cash but definitely not enough to pay for my entire order. This amazing person noticed me panicking after I placed my order. He offered to give me cash in exchange for Zelle. I had no cell service so I had to call Jon and ask him to Zelle money to this stranger. This dude straight up gave me $200 cash and was not even concerned about me not being able to show him proof that the Zelle had been sent. Yes, I could have gone to the bank or cancelled the order but thanks to a nice stranger, I didn’t have to. So Alex, thank you for easing my day! I’m so grateful for your kindness!

Enough

Wendy K.1 Comment

The passing of James Van Der Beek is heartbreaking. It’s a reality check for me that treatment doesn’t always result in cure.

Last Thursday, my mom’s oncologist raised a concern that my mom’s latest blood tests showed her CA-125 (or CA-124?) level was in the 200s (previously it had gone down to 191). He said that my mom may be resistant to her treatment and recommended continued lab work over the next couple of weeks before determining next steps. His hope is to continue with her treatment but hinted that a change in plans may be required.

I recently created a count down calendar for my mom. I pencilled in the last two infusion treatments, showing her that if she stayed healthy enough to maintain the every 3 week schedule, her final treatment would be March 13th!

Now, we are back in the unknown. I am worried that if she has to change treatments, it will mean more than 2 more treatments. I question whether my mom’s heart and mental state can endure it.

All of this has been overwhelming, but we will continue to take it one day at a time, because what’s the alternative?

My mind has been heavy with existential thoughts. No doubt inspired by my mom’s cancer diagnosis and her long hospital stays. The recent unexpected passing of my best friend’s dad, who was a mentor to me early in my career was yet another reminder of the fragility of life. I have been anxiously thinking about what I should be doing to ensure I lived a worthwhile existence. The only thing I can think to do is to just be present. I don’t know what will ultimately be the outcome of my mom’s fight with cancer, but I will continue to be in the day to day with her and make sure she knows how much I love her and how much she matters to me.

A few years ago I read “When Breath Becomes Air” by Paul Kalanith. The book is a personal account of a neurosurgeon’s journey with terminal lung cancer. It was raw, tragic, & beautiful. At the time of his death, his daughter was 8 months old and he writes the most powerful message to her:

“When you come to one of the many moments in life where you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more but rests, satisfied. In this time, right now, that is an enormous thing”.

How I interpreted this message was that she will never have to accomplish anything else in her life to matter, just her existence was enough. Ugly tears!!!

Then, I came across this today…

https://www.instagram.com/reel/DG9aMcDOnrJ/?igsh=MTF1eHU2N2lkb2thbA==

…and honestly James’s birthday reflection echos the same message. “I am worthy of love. Because you are.”

I certainly feel this way about my children. I hope they never feel the burden to have to prove themselves, the fact that they exist is enough.

We are all enough ❤️

Back in the Emergency Room

Wendy K.Leave a comment

After less than a week home, my mom ended up back in the ER. The cause, hypoglycemia, extremely low blood sugar. Cancer patients suffer from loss of appetite, BUT when you are a diabetic cancer patient, things are extra challenging.

Horrific does not even begin to explain what can happen to a person going through a hypoglycemic episode. My mom was rolling around, grabbing herself, convulsing, screaming. She remembers NOTHING, but my sister and I will never be able to forget.

This time, when we called 911 right before midnight on 1/24/26, a team of 4 firefighters arrived first, followed by 2 paramedics. They checked her glucose level and it was in the 40s. The paramedics administered sugar water via an IV and she became responsive pretty soon afterwards. Even though she seemed normal, her heart rate was concerningly low. They recommended taking her to the ER.

I could not brave the hospital alone this time around. It was all so overwhelming. My husband went with me and we asked our 16 year old son to keep an eye on his younger brothers.

Fortunately, the ER doctor decided my mom did not need to be admitted. He attributed the low heart rate to new medication she had been prescribed during her last hospital stay so told me to pause that medication and after he felt her glucose levels were stabilized, he released my mom. We were home before 5am on 1/25/26.

Earlier that same day (5pm) I had gotten in an argument with my mom. She was annoyed that I was nagging her about not eating enough nutritious food. She told me that if she could eat then she would eat, but everything was making her want to vomit. She told me I wasn’t sick so I didn’t understand and asked if I thought she was intentionally not eating. I told her that obviously she was not doing anything on purpose, no one wants to be sick. I just wanted to ensure that the little she ate was nutritious. I told her that if she is not able to eat, then at least drink the Glucerna shakes. She asked me why I was yelling at her if I didn’t think she was not eating on purpose. The last thing I said to her that night was, “Forget it, I won’t say anything to you anymore, do what you want!” The last thing she said to me was, “I should just go die”

Not our best moment, It’s a lose lose situation. She’s right, I’m not the one who is sick. But I am the one going through it ALL with her. Going forward, I told her that it’s important she is fully transparent with her doctors. Be honest about the hard days. My mom is such a prideful person, she hates appearing weak. If she was already annoyed with me chasing after her diet, she was really going to loathe me monitoring her glucose / insulin. All of this sucks, because as previously stated…cancer sucks! What can you do when life just seems to pile on and you feel completely out of control? I don’t know, but for us….we are going to just keep on fighting, one day, one challenge at a time.

Positive vibes and prayers appreciated.

Sky High to Rock Bottom

Wendy K.Leave a comment

My mom was doing great! She had completed 2 out of 6 infusions. She had started to gain weight. In between the infusion treatments, my mom was feeling good and even started to have an appetite. On 12/16/25, we received positive news. Her CA-125 (protein released into the blood by some cancer cells) level went from 876 to 191. The 191 result came from labs taken on 12/2/25 right before her second infusion, so that was the result of just one treatment! Her third infusion was scheduled for 12/30/25 and her oncologist scheduled a PET scan for 1/8/26. We would review the results of the PET scan with him on 1/15/26. Things were moving in the right direction.

Earlier in the year, I planned a trip to Nashville for my mom, sister, and I to attend the Amy Grant & Vince Gill Christmas Concert at The Ryman. I have fond childhood memories of my mom and step-father listening and singing along to Vince Gill songs. When my mom was diagnosed with cancer, I thought we might have to cancel the trip. However, her oncologist gave us the green light and said the timing of the trip should work out between her second and third treatments. We flew to Nashville on Friday, 12/19/25 and spent three nights in Tennessee. We visited the Country Music Hall of Fame, enjoyed the Christmas Concert at The Ryman Auditorium, hopped on the Trolley Tours, and took it easy and rested between activities and meals.

We returned home on 12/22/25 and the very next day we had family (two cousins and an aunt) from Taiwan fly in to visit my mom. It really meant a lot to my mom that they traveled so far to come and support her. We enjoyed Christmas together and they were wonderful company. She felt so much love. It was a great end to a stressful year.

On 12/30/25 my mom completed her third infusion treatment. Three days later, she stayed in bed and said she just felt tired. She slept a lot the next two days and by Sunday, 1/4/26 she was incoherent. I called the ambulance and she was taken to the ER. She had low potassium, low calcium, and was dehydrated. It was scary. The way she was acting, I was worried she had a stroke. I had no idea potassium was so important! My mom was incredibly weak, she could not sit up in the bed, she could not answer simple questions. I honestly didn’t know if she would survive. The ER pumped her full of all the things and by Monday, she was able to carry a conversation but still really weak. The staff kept asking if she used a wheelchair, walker, or cane at home. I told them she was walking up the stairs and driving before she was admitted into the hospital. I did not understand how she went from being completely independent to immobile. One of the nurses explained to me that all people will experience challenges with mobility if they lay in bed for a couple of days, but for elderly people, the decline is quick. I was horrified just how quickly my mom’s body had deteriorated.

On Tuesday (1/6/26) morning, when I arrived at the hospital, she was shaking and complained about being cold. Ten minutes later, she said she was really hot. Her doctor said that bacteria had popped up in her bloodwork, hinting at an infection. She was uncomfortable and looked worse than she did on Monday. I left that afternoon feeling really worried, I was not sure if my mom would ever be able to walk again. At the very least, she was definitely going to need physical therapy and more than likely would get sent to rehabilitation before she could return home.

When I returned later that day, I was shocked to find her bed empty and her sitting on the toilet. This crazy lady had disobeyed the nurse’s orders and gotten out of her bed and slowly made her way to the restroom by herself. I was SHOCKED! Even though I was upset that she was walking around on her own, I was so relieved to see her on her feet! She definitely still had some fight in her.

Marathon of Appointments

Wendy K.Leave a comment

On 11/4/2025, 64 Days, 2 Months, 5 Specialists, 20 Medical Appointments after my mom was discharged from the hospital; she received a formal diagnosis of Stage 3B Primary Peritoneal Carcinoma.

Training and running a marathon is time consuming, exhausting, and emotional but at the end of the 26.2 miles, you receive a medal. For us, we ended our marathon of medical appointments with a cancer diagnosis. I would say that knowing is definitely better than the unknown but yeah, cancer really does SUCK!

For more than 2 months, managing her healthcare was my full-time (part-time) job: countless calls to doctors, nurses, hospitals, labs, insurance, scheduling appointments, transporting her to and from all the appointments, and constant information sharing with all the various medical staff. I maintained an online calendar of all her medical appointments, carried around printouts of her medication, and kept a binder of all her medical records starting with her hospital discharge papers.

It would be unlikely that any patient going through all these health issues would be able to manage any of this on their own. Brain fog is often common. I am fortunate to have a strong network of family, friends, and coworkers to help support me and pick up my slack as my attention has been focused on my mom. I often think about others who are not as lucky and wonder what happens to those patients and families.

My advice for anyone going through health challenges:

  1. Do not accept poor service / care. If you have concerns or are unhappy, ask for a new doctor / nurse / etc.
    • The GI doctor assigned to my mom while she was in the hospital was disappointing. During our 9/18/25 follow up appointment with him, he spent the entire time looking at his phone and computer screen and he made my mom feel like a number on a piece of paper. We left that appointment with no answers, still thinking she had liver cirrhosis. I called her PCP that same day and requested a new GI referral. The PCP referred my mom to the GI doctor who she had visited earlier in the year for all her digestive issues. The experience with this other GI PA was night and day difference. She was warm, listened to us, and said she did not believe my mom had liver cirrhosis. She began questioning the results of the hospital discharge and ordered another paracentesis with a more comprehensive biopsy of the fluid than what the hospital GI doctor had ordered. This second GI office called on 10/7/25 to notify us that cancer cells were found in the fluid biopsy and referred us to an Oncologist.
  2. Scheduling appointments is exhausting. Sometimes the only available dates are so far out in the future. Ask for alternate locations or staff with earlier availability. Additionally, I encourage you to call the insurance companies to question and push authorizations through. Take an aggressive and proactive approach.
    • During the 2 months, I drove my mom all over the Houston area. We had appointments in Kingwood, Tomball, Woodlands, Spring. I asked for anything within a 50 mile radius. I made multiple calls to the insurance companies and Medicare. I also picked up imaging CDs and personally delivered them the same day in lieu of waiting for records to be sent by staff electronically or mailed. I genuinely feel that it made a huge difference in how quickly my mom was able to schedule appointments, complete all her tests / labs, and receive her first chemotherapy infusion treatment.
  3. Keep thorough notes of any interaction you have with nurses, doctors, different specialists, insurance companies, lab technicians, scheduling.
  4. Repeat the same information to EVERYONE. It is important to make sure everyone is aligned and every specialist, doctor, lab, knows everything you know.
  5. Advocate for yourself or your loved one with kindness and understanding. It is challenging not to take out our frustrations out on others, but important to keep in mind that everyone is working in the confines of their jobs. Several times, I felt that being nice to people made them more patient and willing to go the extra mile to help me or share helpful information that would push the process further along.
  6. Confide in trusted family / friends. Dealing with all of these health challenges can be overwhelming and isolating. Ask for help and take care of your own needs. It’s not selfish, it’s necessary!

The Ground Starts to Crack

Wendy K.Leave a comment

Are blogs still a thing? A few months ago, while commuting to work, I started thinking about keeping a journal to serve as a processing tool for myself. I decided to brush the cobwebs off this site and hijack it to use as an outlet. Maybe others will find my experiences helpful.

Here we go…

In March of 2024, while vacationing in New York for Spring Break, my mom started complaining about heartburn. The discomfort continued after we returned home, so she went to her doctor who suggested that she start taking Pepcid AC. After return visits with no improvement, my mom was eventually referred to a gastroenterologist (GI) who prescribed acid reflex medication, advised her to eat small meals, and avoid spicy or greasy foods. After numerous visits to her GI with no relief, she was informed that she had some gallstones. Her gallbladder was removed on July 26, 2024. She still continued to experience digestive challenges. She complained that her food felt like it would get stuck in her throat and she had to drink a lot of water to force it down. Her portions were so small and the variety of food she ate became so limited she was starting to lose weight. After a scan of her esophagus, she was told it was inflamed and was prescribed pantoprazole at the beginning of August 2025. After about 2 weeks of taking the pantoprazole, she started feeling tired and noticed her abdomen swelling. She did some research online and noticed that stomach swelling was a side effect of the medication so she decided to stop taking the medicine (RECOMMENDATION: speak with the prescribing doctor about any side effects you may be having prior to stopping said medication as some medications require the patient to wean off of it to prevent more adverse side effects)

After my mom discontinues the medicine, she continues to feel discomfort. After a visit with her primary care (PCP), the PA diagnoses her with a urinary tract infection (UTI) and prescribes antibiotics. At that time, she mentions that her abdomen felt swollen. The PA noted that she had gained 6 lbs. since the last time she had been seen and it was probably just weight gain. This was a dismissive response to her concern! When she told me his response, I decided I needed to get involved. I suggested going to the Emergency Room (ER) but she wanted to see if the antibiotics would help. She finished the antibiotics and could urinate without discomfort but still felt “off” so she scheduled a follow up appointment. I told her we should just go to the ER because she should not suffer over the weekend, but she insisted to wait for her scheduled doctor appointment on Monday.

On August 25th, 2025 I experienced first hand how challenging it is to navigate the US healthcare system. I took the day off work and went with my mom to her PCP appointment. I told him that her stomach swelling was abnormal. I questioned how the rest of her could look so gaunt and her stomach be so distended. Something was wrong. We brought up our concerns about the pantoprazole medication that she stopped taking. He recommended that she take magnesium citrate to relieve possible bloating and constipation and also submitted a referral for an abdominal CT scan. (RECOMMENDATION: ask for a printout of ALL the medications each doctor has on file). The PCP was naively hopeful that we would be able to get the CT scheduled that same day. After calls to the insurance company, the imaging center, and a request for an updated referral from the PCP, the earliest date we could schedule the CT scan was Thursday, August 28. (RECOMMENDATION: if you are planning to call the insurance company on behalf of a patient, request a HIPPA form to be mailed to the patient so they can fill it out and give you authorization to speak on their behalf. Their verbal authorization is only valid for 7 days).

On Thursday, 8/28/25, I take my mom to get a CT scan and the PCP gets the results and confirms that her abdomen is filled with fluid so asks her to come in and get some bloodwork done. She is told that they will call her with the results, probably on Monday. The PCP states that if she is not in any pain and does not have fever there is no need to go to the ER.

Fri. 8/29 -Before going to work, I check on my mom and she tells me she isn’t in pain but is feeling “weird” and had to take 2 Ibuprofen every couple of hours throughout the night. She was not in pain, just extremely uncomfortable. Also, my cousin got in touch with her and shared sad news that her sister had passed away earlier in the month. My brain cannot even process that news so we put a pin in that and I order her to get dressed so I can take her to the ER. The ER performs a CT scan and runs some bloodwork. The ER doctor notes her esophagus is incredibly inflamed and she has signs of liver and/or heart failure with dangerously low sodium levels (seizure inducing). She is admitted into the hospital. The hospital performs a paracentesis and extracts out 6.7 liters of fluid from my mother’s abdomen. When she was admitted into the hospital, she weighed 124, after the procedure, her weight was 109…what in the actual…?!? My mom received a voicemail from her PCP while we are in the ER. Apparently they received the bloodwork results and noticed the low sodium and recommended that my mom go to the ER immediately (ANNOYING).

It happened to be Labor Day weekend, so things moved slow at the hospital. During her hospital stay, she is seen by two specialists: a gastroenterologist and a nephrologist. The doctors will not release her, they continue bloodwork and monitoring and schedule an endoscopy procedure on Tuesday (9/2/25). Frustratingly enough, the endoscope showed nothing concerning so the doctor discharged my mom that same day. After 5 days in the hospital, they sent us on our merry way. The staff did not even offer her a wheelchair to the car. After days of being labeled a fall risk, they just expected her to walk herself all the way downstairs to the car…how bizarre!

Her hospital discharge paper was covered with scary words: Liver Cirrhosis, Congestive Heart Failure. My mom does not drink alcohol and aside from having diabetes and high blood pressure, her heart health has never been a concern. The hospital staff stabilized my mother and now we owned the responsibility to follow up with her PCP, gastroenterologist, & nephrologist. I had to request a cardiologist referral from the PCP, because for some reason even with the congestive heart failure note, the hospital had not assigned my mom a cardiologist during her hospital stay.