Mistakes

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It’s true, everyone makes mistakes but when the mistake inflicts pain on another person, it’s hard to not beat yourself up about it.

Three times I screwed up and failed my mom:

1. The very first time my mom had a chemo infusion, I forgot to put the lidocaine and prilocaine cream on the skin covering her port. When the infusion nurse stuck the port, she screamed out in pain. The nurse looked at me and asked whether we used the numbing cream. And that is when I realized why my mom was prescribed the cream. I felt so bad.

2. After a week of administering the IV antibiotics to my mom to treat the infection in her blood, I had used all of the first of two boxes the pharmacy had given us of the sodium chloride saline flush solution. I instinctively grabbed 2 tubes of what I thought was saline flush and continued administering my mom’s morning dose. I noticed the tubes looked different than the ones from the first box but I assumed the second box had smaller tubes and it didn’t really matter whether we flushed her PICC line with 5mL or 10mL of the saline flush. It wasn’t until I was cleaning up that I realized what I actually flushed her PICC line with before and after the antibiotic was Heparin Lock flush. I panicked! I called the nurse and she said it should be ok, to go ahead and flush it with the sodium chloride saline and monitor for any new bruises or bleeding gums. I felt like the biggest idiot for poisoning my mom. It was a really careless mistake. The pharmacy sent the box of heparin but since we were administering her medication every 8 hours, the nurse said we did not need to use the heparin to prevent clots in the PICC line.

3. Forgot to remind my mom to take her chemotherapy prep medication before her infusion treatment. She is supposed to take Dexamethasone 12 hours and 6 hours before her treatment. I completely flaked and did not remember until we were headed to the clinic the morning of her treatment. FYI, if you forget but have the medication with you, you can just take a dose at the clinic before they start. But I did not have the medication with me, honestly I didn’t even know where my mom had put it in her room. We postponed treatment a couple of days. I was really upset at myself.

My mom was not upset at me for any of these mistakes. She kept apologizing to me for being such a burden and feels so bad that so much is on my shoulders. Admittedly, all of this is very heavy but it’s not her fault either. No one would choose to be sick. Just a crap situation for all of us.

Underbelly turned Armor

Wendy K.Leave a comment

I started writing my first Cancer Sucks post last year before my mom was officially diagnosed. After her diagnosis, I had zero interest in ruminating the chaos so I didn’t bother finishing the post. Life seemed to stabilize and I was no longer consumed with chasing appointments and following up with insurance companies and doctors.

I honestly did not plan to document anything further. But when my mom was hospitalized for two weeks, I felt so anxious and out of control. There was so much idle wait time and my brain was not in the right state of mind to complete any meaningful deliverables for work. So while I sat with my mom in the hospital, I made hand drawn cards and listened to music. Then after a week, I decided to channel my nervous energy into documenting what was happening to my mom in the hopes of providing some helpful insight for others who were starting their own cancer journey.

I had grand plans to create useful templates for medical contacts and medication lists. Maybe even useful reference guides but then it became too overwhelming to make sure the content was perfect.

I abandoned the need to be productive and decided to just journal for my mental health. I wasn’t sure if I would publish anything I wrote because sharing the news and providing updates to even a few close family & friends oftentimes left me feeling incredibly vulnerable.

But one of the coolest things about opening up to people, is the number of people who have reciprocated and shared their personal experiences with cancer, caretaking, or navigating the healthcare system. It’s incredible how many people were not only able to understand but also taught me many helpful things. I would not wish this experience on anyone but being able to relate to those who have walked the same path has been both validating and encouraging.

Thank you for your positive vibes, support, & prayers. I feel less alone and strengthened to keep trudging along.

Back in the Emergency Room

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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.

Notable Mentions

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We should acknowledge and celebrate those who commit to 12+ hour shifts and navigate the demanding world of hospital life. Their work is far from easy, often involving challenging, gory, and emotional situations. When we come across individuals who not only show up but do so with a positive attitude, they deserve our recognition and appreciation, not harm.

The tragic death of ICU Nurse Alex Pretti in Minnesota is heartbreaking. This outrageous event prompted me to reflect on the numerous nurses, doctors, technicians, and various hospital staff involved in my mom’s care. Some of them, angels on earth, whom I will forever be grateful to for their kindness and extra care they showed to my mom during her hospital stay.

Nurse Tasha, ER Nurse, took such good care of my mom despite being so busy running around handling the insane number of patients in the ER that evening. My mom arrived at the ER a little before 9pm on 1/4 but did not get moved into a room until 4:30pm on 1/5 (almost 20 hours later). She was admitted before 2am on 1/5 but the ER and hospital were at capacity with at least 8 people laying in bed in the open area without rooms. I saw a man getting an open head wound stitched up right in the walkway of the ER. My mom was lucky to have a room. Despite the chaos in the ER, Tasha was very kind and patient.

Hands down, Nurse Wene was my favorite night nurse. She was attentive to my mother, and worked really hard to keep her comfortable. I don’t know exactly how to explain the warmth I felt from her, but it felt special.

Nurse Gene from the surgery / procedure prep team was someone we had met prior to to this second hospital visit. He was one of the nurses that helped my mom when she had her paracentesis procedures at the end of 2025. He also exhibited compassion that felt genuine.

Dr. C, the Infection Disease doctor, was wonderful. He was thorough and aggressive when it came to treating my mom’s infection. He checked on her regularly, even late at night. He listened to our concerns regarding the pain she was feeling in the area around ribs, and I appreciated him checking her spleen (behind the ribs) to make sure infection had not settled there.

My mom had two general doctors during her stay. Dr. S and Dr. W. The experience between the two were night and day. I never got the feeling that the first doctor was really concerned about any of the symptoms my mom was experiencing, he seemed dismissive and ready to leave as soon as he walked in the room. Dr. W on the other hand, was amazing. She was wiling to listen to our concerns, address them, and take the time to explain. I was really happy when she took over my mom’s care.

Kerry, one of the hospital staff in surgery, helped my mom get a new bed after her surgery. Her bed was malfunctioning the evening before, and kept auto-calling the nurses. Maintenance was not able to remediate the night before, so the poor nurses had to deal with the constant calls from my mom’s bed. When I mentioned it to him, he made sure to grab her a new bed but even more kind was him taking the time to chat with me while I was waiting for my mom in the surgery waiting room the day she had her port removed. I was really feeling overwhelmed by everything, and just that little conversation brightened my day.

Donna, my mom’s case manager, who helped me navigate a 2 hour call with insurance and then get my mom squared away with her IV Antibiotics delivery and home health care (nurse, occupational therapist, & physical therapist).

I also came to know Kaden, a 19 year old, who cleaned my mom’s hospital room regularly and Jeremy the staff member from the kitchen who delivered my mom her food.

All of you matter, and all of you made a difference in our lives!

TOO WEAK / TWO WEEKS

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My mom was admitted to the hospital on 1/4/26 and discharged on 1/18/26. In those two weeks, a lot occurred…

Day 1 – Admitted, given potassium, calcium, sodium
Day 2 – Chest Xray, Brain CT
Day 3 – Bacteria found in bloodwork, IV Antibiotics started
Day 4 – Pain on both sides of torso (rib area), starts seeing black floaters, Echocardiogram
Day 6 – TEE procedure
Day 7- Surgery to remove her port, confirmed to be the source of the bacteria infection in her blood
Day 8 – MRI of lumbar & thoracic spine to check for infection
Day 9 – Chest pain
Day 10 – CTA (CT Angiography)
Day 12 – Cardiac Catheterization revealed severely blocked arteries in her heart. As a cancer patient, she is not a candidate for heart bypass surgery.
Day 13 – Abdominal Sonogram
Day 14 – Hemoglobin low leading to blood transfusion
Day 15 – Abdominal CT Scan, Chest Xray, PICC Placed, Discharged

On top of all of the above, my poor momma endured so many blood withdrawals, IVs, medications. She was weak, confused, in pain, and frustrated.

It was a challenging two weeks. My mom felt like she was in prison, and I struggled to balance all my responsibilities as a daughter, mother, sister, wife, & employee.

In the end, my mom did not qualify for rehabilitation because she was walking around well enough, so our options were skilled nursing or bringing her home and someone learning how to administer the IV Antibiotics for her every 8 hours. Her oncologist and her doctor both advised against skilled nursing, so…I was trained and she came home.

Sky High to Rock Bottom

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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-124 (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, 12/19/22 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.

Stillness

Wendy K.Leave a comment

After my mom was formally diagnosed with Stage 3B Primary Peritoneal Carcinoma on 11/4/2025, things started moving in fast motion. We were able to get the port placed the very next day and her first infusion treatment was scheduled for 11/13/2025. There were a few other remaining tests her oncologist and cardiologist wanted her to complete, but there was really nothing else to do but wait for each of her infusion appointments which were 3 weeks apart. It was strange, not having to hustle for appointments and deal with insurance and referrals. The hardest part of waiting for a diagnosis was over, and now we had a plan. It was weird, I felt like I was in fight mode for so long, I really didn’t know what to do with myself. All I had left to do was to support my mom as she continued her fight with cancer.

Yo Yo of Emotions

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Receiving any sort of negative medical news brings on a roller coaster of emotions. When we thought my mom had liver cirrhosis and would have to manage ascites with routine paracentesis procedures, it was shocking and intimidating. When we were told that cancer cells were found in the fluid that had been biopsied from her abdomen and all her symptoms pointed to pancreatic cancer, we were scared and sad. It felt like a death sentence. My mom felt like all of it was so unfair, she didn’t smoke, didn’t drink alcohol, and ate healthy. I was angry at her doctors for not checking for cancer earlier. There was so much trial and error with her gastroenterologists with acid reflux medication, colonoscopies, and even gall bladder surgery. I was mad at my mom for not mentioning to her doctors that her older brother had been diagnosed with pancreatic cancer. I was mad at the ER gastroenterologist for not catching the cancer cells in the first fluid biopsy and referring her to an oncologist right then and there. I was mad at God. In between the telephone calls and medical appointments we would cry, quiet sad tears. When we found out that it was not pancreatic cancer, we felt hopeful. When her diagnostic mammogram showed calcification and required a biopsy, we held our breaths. When both her breast biopsy and brain MRI came back clean, we celebrated! Her echocardiogram came back normal, yay! Her stress test came back abnormal, boo! Each new piece of information that is revealed surfaces a new emotion. It is EXHAUSTING!

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

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Are blogs still a thing? A few months ago, while commuting to work, I starting 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.