What Happened Part 2

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? 

What Happened Part 1

My name is Chelsea Burrell. I am writing this as my first ever blog post. My mom is Carolyn Langlie-Lesnik, the person you have come to know through you or your loved ones cancer journey. Many of you know that my mom passed away on 4/25/2024. If you want, you can see her obituary here. We also recorded her service if you’d like to see it here.

I want to first start by apologizing for everyone who reached out to my mom via email, FaceBook or her blog and never received a response. I know everyone here is facing a hard battle and to not have a response is discouraging. I will do my best to make sure this is not your experience in the future. 

I wanted to share what happened to my mom throughout this journey. Maybe this is as much for me as it is for you. For a little context, I have one sister. I am 33 and she is 34. We are both married and I have two daughters, ages 1 and 3. 

I think the story begins in 1991. My mom developed rheumatoid arthritis soon after I was born. The treatment that put her RA into remission caused her to become immunosuppressed. Despite that, she never really got many severe infections. That being said, when COVID-19 hit the country in 2020, she knew she had to be very careful. She didn’t have much of an immune system and live vaccines didn’t work on her. She eventually contracted COVID in February of 2022 and was hospitalized for a month. During that time, my dad was with her every day. She remained on supplemental oxygen for the next 8 months. My dad always took care of my mom. He showed loved through acts of service. 

In July of 2022, only a few months after she contracted COVID-19, my dad passed away unexpectedly from a heart attack. I know my mom didn’t share this with many people, but it really tore her apart. It made me think that losing a spouse must be one of the hardest things you can go through—particularly when your kids are grown and out of the house. My parents were both nurses. They agreed to both start working part time so that they could spend more time together. Ironically, they both would joke, that when the time came, my mom would go first. She has had so many health scares throughout her life and has come out of all of them unscathed. At some point she couldn’t keep getting so lucky. When my dad passed away suddenly, I think we were all in shock for months and the grief was overwhelming. He seemed so healthy. He worked out regularly, was a thin/fit person and was full of so much life. After he passed away, I saw an article in a magazine about “How to Live Longer.” The article was about things you could do to extend your life  (diets, exercise, purpose, community, etc.). It made me so mad. I remember thinking that you can do everything right and still die prematurely. What is the use in articles like this?

My mom and I were always close. Once my dad passed though, we began to see each other daily and talk for hours a day. We were both grieving and I couldn’t stand the thought of my mom being alone. 

As the one year mark of my dad’s passing was approaching, my mom decided that she couldn’t be in the area for it. My dad’s birthday was on the 4th of July. In 2022, he had a heart attack on the 3rd and passed on the 5th. My mom couldn’t imagine being here for the first anniversary of his passing. Especially in the United States where fireworks (which used to be a celebratory reminder of his birthday), would now just be a sad reminder that he isn’t with us. My mom had always wanted to travel abroad and so she decided that now was the time. As a professor, she had summers off. She decided that she would go on a  cruise to Europe in May of 2023 as soon as the semester was over. She then scheduled a trip to Africa from 7/1/2023-7/10/2023, completely missing the anniversary of his passing and all of the fireworks that would go with it. 

We were told that the first year after his passing would be the hardest. I remember after the anniversary of his death, we expected it to suddenly get easier, but it didn’t really make a difference. There was no magic date where it got easier. Little did I know that, in my case, life would just get more complicated. Eventually grieving my dad took second place to caring for my mom. 

The day after my mom returned from Africa, we went to church together. After service, she told me that she wasn’t feeling well. I encouraged her to go to urgent care. If she waited too long, she could get really sick. She went to urgent care the next morning and they found that she had pneumonia. They prescribed antibiotics and released her. After a few days, she was still very sick. She had high fevers and her oxygen was in the low 90’s. She went to see her pulmonologist who prescribed stronger antibiotics. He said that if she didn’t get better, she would need to go to the hospital for IV antibiotics. A few days later, still feeling very sick, she took herself to the ER. She was admitted to the hospital that day. 

Life goes on!

It took me quite awhile after my surgery to get used to living in uncertainty.  It’s a difficult way to live, uncertain if you will be here in another 6 months, or a year.  I had trouble making plans.

But I eventually was able to make plans, and I went back to school for my Master’s Degree in nursing. I committed to new jobs.

Now I am back in school gong for my Doctorate degree!   When I complete it in a year and a half I will be Dr. Nurse!  Don’t know if anyone besides my students will call me doctor, but I call my professors doctor if they have a doctoral degree!

But life does go on, and sometimes just making plans and starting new things helps you deal with the uncertainty.

 

Limbo

I am reposting something I wrote in 2007.  I will be a 20 year cancer-free survivor, my anniversary is in about a week, but I still remember living with the uncertainty I felt after treatment was completed.  Living with uncertainty I think was the greatest challenge in what I now think of as my “cancer career”.   I will tell you the sense of uncertainty fades with time.  Maybe this will help some of you?

Living in Limbo

I loved a book I discovered when I was a 3-4 year survivor. It was written by Glenna Halvorson-Boyd (a 10 year oral cancer survivor) and Lisa K. Hunter (a 3 year melanoma survivor). They said they wrote the book they’d needed to read but that had not been written, “Dancing in Limbo: Making Sense of Life After Cancer”. After interviewing many cancer survivors, they discovered that they all shared many of the same feelings.

Cancer survivorship is a new frontier. In my own lifetime as a nurse, I was sometimes part of a conspiracy long ago to help families keep a cancer diagnosis secret from the patient. Sometimes families decided to spare the patient the knowledge of their disease; after all, what could they do if they knew do except anticipate their own inevitable and painful demise? Cancer was always equated with death. BTW, research later discovered that these patients knew their diagnosis, but also knew they weren’t supposed to know, so were denied support. Back then the word cancer often wasn’t even spoken aloud….it was often referred to as “the big C”. It was the most terrifying diagnosis one could receive…..”please don’t let it be cancer!”.

So there isn’t a wealth of knowledge about cancer survivorship. I’m going to quote from the first chapter of the book “Dancing in Limbo: Making Sense of Life after Cancer”. I was ever so grateful someone had identified and put into words exactly how I felt. (pp. 1):

“There is a cruel myth about surviving cancer. In this myth, when medical treatment is successful, the story ends. Having survived cancer, we pick up our lives where they were interrupted and carry on- with increased gratitude for the simple acts of daily life and clarity of purpose that only a brush with death affords. In this myth, cancer is a blessing in disguise.Though this myth has some truth to it, it is cruel because it is impossible to live. The real story does not end “happily ever after”. Instead we live in limbo: after cancer, we know we are on uncertain ground.”

They also point out that we are different from those who have survived other life-threatening traumas in that “as cancer survivors we hope we are cured and proceed as if we are cured, but we cannot be sure”. Cancer outcomes aren’t known for years, so the limbo is a lasting one. Another appendiceal cancer survivor trying to reclaim her life recently spoke of the possibility of recurrence, which is common with appendix cancer, as a ”grey cloud” that is always present.

Someone suggested to me the problem is that we just don’t have enough faith. I disagree. I’ve read essays by clergy survivors who experience the same struggles. Read the Psalms….faithful people struggle.

I’ve been in the cancer survivor community for awhile now, and over and over I see the disorientation of those who finish treatment and try to resume their former “normal” life. They are afraid to say they are struggling, after all, they’ve survived cancer, shouldn’t they feel grateful? They will admit their struggle to other cancer survivors, but not family and friends as they are afraid of being seen as ungrateful. I sometimes want to welcome them to Limbo…….not a bad place really, but a place of transition. A new journey of sorts. The road to creating a new after-cancer normal.

 

Misdiagnosed, misunderstood, mistreated

I have been frustrated lately.  We have had several new people join the Facebook support group who have been diagnosed with appendix cancer and who have said they have been treated or will be treated with a hemicolectomy.  A hemicolectomy is not the treatment for appendix cancer, it is treatment for colon cancer.  Appendix cancer is NOT colon cancer.  When I was diagnosed, I was to have a hysterectomy for fibroids.  It was to be a laparoscopic surgery.  When they got the laparoscope in, though, they saw I had a ruptured appendix, so they just removed my appendix.  They saw it had a tumor, so biopsied it and discovered I had appendix cancer.  

I was a nurse and knew the surgeons at the hospital.  The chief of surgery, who was a wonderful person and an exceptionally good surgeon, told me the next morning that my cancer was very rare, and that I needed a hemicolectomy right away and that they would do it the next morning.  They felt I needed a hemicolectomy, because they felt that since my appendix was part of my colon, that I had a type of colon cancer, and treatment for a cancerous tumor on the colon was a hemicolectomy.  I needed that cancerous part of my colon removed. 

I told him that no, my cancer was exceedingly rare, and that I did not want to commit to any surgery or treatment until I had time to learn about my cancer and what treatments were available and indicated for my type of cancer.  

I went home and spent much time reading all of the medical journals and every article ever published about appendix cancer.  I learned that no, a hemicolectomy was not the surgery I needed for appendix cancer, that was the treatment for colon cancer. 

I needed a surgery called a cytoreduction surgery, a much bigger surgery, called by some a MOAS, Mother of All Surgeries, in which the entire abdomen was searched for any small cancerous tumors and organs affected by those tumors. Those tumors and organs were removed, followed by chemotherapy placed directly into the abdomen.  So, I sought THAT treatment.  I am a 19-year survivor because I was treated for appendix cancer and not colon cancer.   

The sad thing is, those who have the hemicolectomy and have their appendix cancer recur and THEN go to a specialist have a lesser chance of successful treatment.  Successful appendix cancer treatment also depends on a “prior surgical score”.  When you have had major surgery before you have the cytoreduction surgery for appendix cancer, you develop scar tissue and adhesions in your abdomen which makes the cytoreduction surgery more difficult and interferes with the circulation of the HIPEC chemotherapy in your abdomen after the surgery.  I’ve known several people who have had major surgeries more than once for appendix cancer recurrences before they FINALLY went to a specialist. their outcomes were not good.  

Many diagnosed with appendix cancer want to stay with the doctors and surgeons and oncologist that they know and love at the facilities near their homes.   They know and trust these doctors and believe they have their best interests at heart.  And all of that is true!  The surgeons and doctors at my home hospital were wonderful and knew me personally and wanted the best for me and wanted to see me cured.  But they had never seen a case of appendix cancer.  They were very familiar with colon cancer, and since the appendix was part of the colon, it just made sense that it was another type of colon cancer.  They had never been taught about appendix cancer in medical school…. why would they devote time teaching about a disease that will affect .000004% of the population?  

 So many people diagnosed with appendix cancer are not seeking out appendix cancer specialist who specialize in cytoreduction surgery and HIPEC.  I want to do all I can to change that.   It is the most IMPORTANT THING those newly diagnosed can do.