CLL Changed My Life

By Bluizz

1 min read

My name is Lynn. I’m 71 and was diagnosed with Chronic Lymphocytic Leukemia (CLL) in May of 2021. I found my life changing slowly over the past few years; not in a good way. There were appointments every 6 months at Dana Farber to monitor the progression.

In September 2023, I started treatment. I’m on 2 medications (pill and infusion). Dealing with the fatigue, mental confusion, and just coping on a daily basis is proving to be tough for me. I’ve ALWAYS been a very active person; gardening, walking, working 2 jobs and now I’ve become stagnant. It’s very frustrating!

And, I had to put my little girl (Mabel) to sleep in December 2022 because she had lymphoma.

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Amanda Brunson Moderator & Contributor
I’m sorry of the passing of your baby Mabel 💜🫂 our animals are very much family. I definitely understand the frustration of not being able to do the things you know you can do and do them well. I truly hope your activity level is able to come back up. I’ve know of a group called silver sneakers to get people physically moving more. If you’re interested you should see what they offer as far as physical activity check them out. You may gain a whole bunch of gym friends with the same goal‼️🥰 It’s always better with community supporting you✨I personally love joining fitness groups to help my physical activities 💫🐼
Yolanda Brunson-Sarrabo Moderator & Contributor
I know this is a lot and it tends to pile on all at once...my condolences to your little Mabel. Trying to get a grasp of handling everything takes time and sometimes a strategy of how to get over this hill. Perhaps ask your medical team how you can join local support groups in person or virtual as a step to talk about it, or just have the support in numbers to help along the way. You are not alone! Wishing you the very best!
Wendy S Member
Hi Lynn. My story sounds a lot like yours. I used to work at one of the best hospitals in the USA and loved life. I loved my patients, loved going to work every day and often staying long after my shift was over. I have had SLL now for 20 years. Over the course of that time, my life has ground to a standstill. I had to quit my job due to the risk of contracting MRSA or C-diff, or another virus that could now kill me. After going septic in 2011, I resigned my position and have since become the "slug". Not by choice, I just don't have the energy sometimes to even get up to make toast even though I am very hungry at the time. Starving is the option I choose more often than not. Even getting up to go to the bathroom is a job anymore. I found out that my iron is low, my magnesium is low and other things that are supposed to be at a normal level, just aren't. I think when we have cancer, a chronic cancer, we have to have an acceptance that life is never going to be the same. We can't be hard on ourselves, we didn't ASK for this, it's all a lesson. After 20 years I have come to see that this journey has taught me things I would never have learned otherwise. Patience and acceptance of my limited ability now are just a couple of them. Be kind to yourself and remember that this is hard enough without beating ourselves up for something that is way beyond our control. I am sorry to hear of Mabels passing. When I lost my Bernese Mountain Dog, Noelle, I thought I would die right along with her but instead I started volunteering with a pet shelter here and suddenly was needed again. I love my time with the animals! I know I can't give a pet the attention and time it needs right now, I am too busy trying to care for me, but it is nice to have the option to do this. If I am too tired, I don't take the shift and someone else who has signed up to volunteer goes. It's perfect for me. Perhaps in time, when your heart heals a little, it's something you could consider. Stay well. 
1. Bluizz Member
 Wendy when I was first diagnosed with CLL in 2021 I was given a 6 hour iron infusion and an antibody infusion. What’s interesting though is that I didn’t actually start treatment until September of 2023. It did help. I’m getting a new puppy the end of February (Stella). Stella was born August 30th. The breeder offered to care for her until I’m finished with my infusion treatments. I know Stella will give me a purpose. You take care.
2. Angie Netterville Moderator & Contributor
 How wonderful to have something to look forward to! I hope you and Stella bring each other so much joy <inline-mention username="Bluizz" user-id="8774041"/>
Angie Netterville Moderator & Contributor
I think part of living with a chronic cancer is learning to love ourselves through the not so pleasant times. When I first went through treatment 16 years ago, I would mentally beat myself up at times when my mental recall was bad or I didn't have the energy to complete tasks. But now after all these years, I allow a down day to be a down day, I sit with it and say nice things to myself. And in doing so, I notice that my energy improves. I'm not saying it's always as easy as that, but it helps. Sorry to all of you who have lost fur babies. I haven't had a pet for many years, but I know the heartbreak is very real.
Ronni Gordon Contributor
<inline-mention username="Bluizz" user-id="8774041"/> I also go to Dana-Farber. We are so lucky to have such a great institution in our area. If you don't mind my asking, where do you live? I actually live in the western part of the state (South Hadley) , a couple of hours give or take from Dana Farber. I was lucky that my sister lived closer, in Newton, and her house could be headquarters while I was in treatment. I'm so sorry about Mabel. I had to do the same with my little girl in July 2022 . It was a real mess. On top of the normal grieving, I had to cope with the regret after I allowed the vet hospital to pressure me into unnecessary surgery that only prolonged her pain. But we do the best we can, don't we? I was wondering...what helps you cope? And are you able to get little walks in? Even just a little movement helped me when I had very little energy. Warmly, Ronni (blood-cancer.com team member) 
1. Ronni Gordon Contributor
 <inline-mention username="Bluizz" user-id="8774041"/> So do you go to the cape often ? I wish I lived closer to the water and I love the cape . There was a poet I liked , Anne Sexton, and all I can remember of her poetry is that she wrote a poem about talking in her sleep and saying “I am crossing the Bourne bridge.” Odd thing to remember I know! It’s great that the breeder will hold your pup . Like you, I am never very long without a dog . I waited a whole three months after Maddie died . And I got another Lab , Gracie . I am not a spring chicken and should probably have gotten a smaller dog so as to avoid the risk of getting pulled down , but I guess we do what we are used to. I wrote something about all of my dogs. I don’t have time now to find it, but if you are interested, you could browse through my pieces on the site and find it. Actually I wrote a couple of pieces about dogs . I can look for them later. My friend had a Bichon . She was very cute. Growing up, we had a little crazy dog named Sam . He was part poodle and part affenpinscher , a German dog. An affen-poo before they started breeding so many poodle combinations. I will see if I can upload a photo of Gracie . She has really helped me get over my grief. Because I love her and also because I have to watch her all the time! Keep us posted , either about your health or about your dogs … whatever inspires you. <img src="/content/images/2024/01/22/f3eda39c62c4126b6f48fb5f01cdd080_medium.jpeg" alt="" class="uploaded-image"/>
2. Maria Valente Moderator
 <inline-mention username="Bluizz" user-id="8774041"/> I was fortunate enough to have a bichon. George was an incredible snuggler when I was sick and he was a huge comfort. He passed a few years ago. I can understand the purpose our pets give us. I would fight the fatigue for George and to meet his needs I realiazed how much I could do to meet my own needs. Thanks so much for commenting and give Stella a hug for me! All the best, Maria (blood-cancer.com team member)

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