Saturday, September 16, 2023

Quality of Life and Hard Decisions

It's been a while since I've done an update here, and I feel like I have more thoughts then I can put up on social media, so here I am...

As some may know, I was diagnosed with stage 4 mantle cell lymphoma in January 2022. I went through with the initial treatment of chemo and it was hard. I ended with a stem cell transplant to lock in my remission for as long as possible, as this is an incurable lymphoma. 

I have been going through the recovery period since then and doing the maintenance immunotherapy that was prescribed and I have been sick for the better part of a year now.

It started in October 2022 and I have had every respiratory infection, 100 times worse then anyone else, along with digestive issues, lightheadedness and not being able to function properly. It has been a long year for me.

Oh the first day of school my mom called me an ambulance, I couldn't move, I could hardly breathe and I was vomiting. They paramedics got me on oxygen straight away, my sats were under 90 and I was rushed in. 

It was scary, I was terrified. They asked me again about ventilators, end of life, did I want everything necessary done if needed for life. Who was my pet of attorney for medical reasons... what a whirlwind.

I didn't eat or drink for almost 2 days, was hooked up to IV, Oxygen, had an X-ray a CT scan, and received 3 heavy doses of two different antibiotics.  I nearly passed out during IV placements and felt awful for the staff.

They said I had pneumonia and they wanted to clear it out as quickly as they could. I was admitted to a private room. I was then told that I also had Covid, so was isolated and everyone who came to see me had to gown and mask. 

I was finally able to start eating again, then they switched me from antibiotics to steroids and I had to start monitoring my sugar levels (steroid induced diabetes is my thing). 

I lost the ability to smell and taste my food, but it felt good to be able to eat again. I was starting to be able to breathe again then my IV line blew up in my arm. They had to remove that one and use the smaller one today had found for my CT scan. 

All this time, I was worried that my lymphoma had returned and I was beside myself at the thought of staying the brutal treatments again... 

The oncology team had a look at my scan and said that it didn't look like it had come back so that was relieving. 

I really started to feel better and after about 7 days I was feeling like I haven't felt in years! I was so happy at the idea of coming home and getting back to life with the kids. 

During this time I started connected with the group of people that I met on facebook who all have or are caring for loved ones with MCL and we were discussing the different treatments.

When the first diagnosis came, I knew nothing, I was scared, looking at the end of my life, and I just blindly followed the plan. It was the right thing at the time for me.

Now, I'm questioning this maintenance part of my journey, I understand the desire to stay in remission for as long as possible, and to do anything possible to get there, but when do we stop and say living a quality life is more important then the treatments?

I have had a good week to process this all and I am planning on stopping the remaining treatments. I'm tired of being sick, not being able to get up and move around, being in bed so much and just not living. 

Some people may not understand this part, buy I'm starting to understand the "quality of life" concept that I've always had a hard time with. 

It is time for me to live and enjoy and create memories with my family, to look forward to trips, to enjoy planning and cooking and having silly movie nights. 

I'm looking forward now to going back to work soon and I feel like my head is completely clear again!! 

It has been a long time since.

And if I don't get the full 5 year remission that was potentially going to happen, and I only get 3, I will have had 3 years of good living before going through the next set of treatments. 

I'm good with that. 

Anyhow, these are my ramblings for today, I'm feeling so good and clear, organized and healthy, and my mental state is in an amazing place right now.


  1. My husband stopped treatment to have a better quality of life. The hospitals basically ignore you after that.

  2. 1 Peter 2:24 By HIS wounds you have been healed. Praying for your healing in Jesus Name!