Once my mom was on the right antibiotics, she started feeling better. I visited her every day. We would talk, play games and drink coffee. A few times, I actually took a nap and shower in her hospital room. It was a small reprieve from being a mom of two little ones, always on the go. Five days later, the doctors were ready to release her. They didn’t give her any oral antibiotics or other medications to take home, which was concerning. But she felt well. She was well enough to drive herself home, just like she drove herself there.
She was so excited to be home that day and started trying to get some things done at home that she neglected while in the hospital. However, the next morning, my mom called me to say that she didn’t feel well. She was okay, but needed to relax that day. Her oxygen sats were dropping and she had a low grade fever. Luckily, she had a portable oxygen machine that she purchased when she had COVID-19 in 2022 that she could use. The Ibuprofen was keeping her fever at bay. She told me not to worry—she just wanted to keep me updated.
About 8 hours later, I got a series of 3 texts that made my heart drop.
“103.8”
“70’s”
“very sick”
I was at a play date with my kids when I got the texts. I quickly left, met my my husband to dropped off the kids and rushed to her house. When I got there, my mom looked terrible. She was in the recliner that my dad used to always sit in, but she couldn’t get up. When I talked to her, she seemed impaired and confused. I asked if she had taken any Ibuprofen or Tylenol for her fever so far today and she said, “no.” She told me that she wasn’t able to get up to get it. I told her that I needed to take her back to the hospital and she had to help me get her to the car. She tried to get up. I tried to pick her up. But we could not get her up. If I couldn’t get her up, I would have to call 911. When I told her this, she said I couldn’t do that. An ambulance would take her to the closest hospital—one that she didn’t particularly like. As a nurse, she knew the hospitals in the area. She said that se wanted to go back to the hospital she was just at, where he doctors knew everything about the disease she had. I remember thinking that if my dad were here, he could have helped me lift her. We could have done it together and gotten her in the car. But, it was just me now and I needed help. After a little more time trying and having no success, I called 911.
When the paramedics showed up, they took her vitals and checked her out. I explained the situation and asked if they could help me get her into my car rather than taking her in the ambulance. They said that, so long as she can help a little and they aren’t carrying her against her will, they could get her into my car. With the help of three big men, my mom was finally in my car and I could take her to the hospital of her choice. Before I left, I asked the paramedics a question I really shouldn’t have to think. “How much will this cost me?” A question that now seems silly since she has had a total of 9 ambulance rides, 8 months of hospitalizations, 5 ER visits and hundreds of diagnostic tests with much of the above mentioned not being covered by the health insurance as ‘medically necessary.’ “Its free, ma’am. So long as we don’t take her, we don’t charge.” That was a relief.
Once we got to the hospital, I got her in a wheelchair and pushed her into the ER. Even though the room had about 6 other families waiting, we were called back first. She was admitted to the ICU with pneumonia and now COVID-19. She likely contracted COVID-19 during the first five day stay. The pulmonologist on the case told her that, had I not come to get her, she would have died at home that day. (We started referring to him as the “Dooms Day Doctor” because he always told my mom the brutal truth. We have since come to love him and would be our top recommended doctor.) She restarted the IV antibiotics, but her oxygen demands were so high. She was put on high flow, 70 liters. For reference, she was previously discharged on 2 liters the day before. She got a little bit better and the doctor said that she narrowly missed going on a ventilator.
Over the next few days and weeks, she would have bad days and okay days, but she didn’t really get any better. There was no more playing cards or drinking coffee during this hospital stay. She was so sick and so scared. Since the antibiotics didn’t seem to help too much, they did a bronchoscopy to determine what was in her lungs. This showed that she had three different types of pneumonia, fungal, bacterial and viral. I still visited my mom every day, but it was harder on her. She had to be on BiPap and was on a schedule of proning ever two hours. This meant that she laid on her stomach so that her lungs could expand more. Studies showed that proning was good for COVID-19 patients. Rather than talking, we communicated through text or by writing on a dry erase.
The doctors kept trying new medications and new strategies to help her recover. My mom even found a study where very high doses of steroids helped a COVID-19 patient turn a corner with their lung damage. This was similar to how she approached her cancer diagnosis. 23 years ago, she did research and found a treatment plan for her Stage 4 Signet Ring. The doctors followed her recommendation with the steroids, but it didn’t help. Talks of a ventilator were brought up often, but she always said she wanted this as a last resort.
Her breathing got worse and worse. She was now on constant BiPap, so a mask which high flow oxygen was pushing into her. This meant she couldn’t eat or talk. The air was so dry and powerful, she had frequent nose bleeds. She started having panic attacks where she felt like she couldn’t breathe, even though her oxygen was in the high 90’s.
On 8/26/23, my mom texted my sister and me. She was ready for the ventilator. She just couldn’t do it anymore. She said she would wait for us and her pastor to visit and then she wanted to go on it. My sister visited her first while I stayed with my kids. As we were trading spots, my mom texted me to say that she wasn’t sure that she could wait for me to come anymore. She wanted to go on the ventilator right now. I made it there just in time. The last thing she wrote to me is “I think Jesus will cure me of this.” She felt confident that her life here wasn’t done and that she would get better. It’s what made going on the vent okay to her. Sometimes I look back on that and think God misled her. I guess it depends on how you view it. She is in heaven now, with a new body—cured of this illness. However, the next 8 month just seems cruel and it was hard to not be mad. The hope she had, was it false hope?
Chelsea, what was your moms treatment plan for her signet cell,my wife had the exactsame thing stage 4 signet cell appendex cancer.My GI doc found signet sells in me after upper scope.He sent me to my hemotoligest fast he said in 35 years of pratice he never saw any thing like it.Hemotoligest did ever blood test he had but no bone marrow biopsy he said its inflamation not cancer.I’m still here 3 and a half years later.Paul
Hi Paul, my mom had debulking surgery, which was successful in removing the tumors in her abdomen. She had peritoneal chemotherapy (EPIC) administered directly into my abdomen beginning the day following her surgery and for several cycles thereafter. After the peritoneal chemotherapy, she began treatment with a combination of three IV chemotherapy drugs for the next ten months. EPIC really isn’t done as much any more and you usually see HIPEC done.