Still Fighting CLL After 12 Years and Still on Top

by GregP_WN

"Still_Fighting" is a 12-year survivor of chronic lymphocytic leukemia (CLL), although she is still on maintenance treatments, and likely will be for the rest of her life, she says she is still doing well and living her life. Take a look at her story, and drop by her Homepage at WhatNext and giver her a big CONGRATULATIONS for staying on top in her fight. In this guest blog post, she details her fight with CLL.

Still Fighting Cll After 12 Years

I really didn't have any indications that I had CLL that I was aware of or my family doctor was aware of. My boys were young and always bringing home some kind of illness, I would get sick and it would take a long time to get over it. I had a large lump on the back of my neck that my doctor said was a lymph node but I had strep throat so it was a justified call on her part. I didn't find out I had CLL until I had multiple surgeries at one time in February 2006. I had my gallbladder removed, I had a hysterectomy, I had a hernia and I had a bladder sling put in all at once.

When I went in for post op visit to see my surgeon with my husband is when I found out I had CLL. My surgeon said they found CLL in my organs that were removed and he had sent it off to MD Anderson to verify and it was confirmed. He told me it was incurable and I needed to find an oncologist. I found an oncologist fairly quickly and she proceeded to do extensive testing. She called us into her office and told us I had CLL for sure. We talked the CLL and wanted treatment right away but she said it wouldn't do any good because I was at a "watch and wait" stage and trying to treat CLL at this point wouldn't do any good anyway. She gave me a lot of information and told me she wanted to see me every 3 months and have my blood tested.

I was in "watch and wait" for 2 years before I had to start treatment. When I started treatment my oncologist explained everything to me and told me I would start chemo school the next day and chemotherapy the day after that so it moved really quick for me everything happened in a week. I can't remember exactly what treatment she had prescribed because I've had so many now but I do remember that she told me that it was a once in a lifetime treatment. It was pretty rough and didn't work well for me so she switched me to Doxorubicin, also called "The Red Devil", a hard-hitting chemo treatment for people who need treatment right away to kill off as much of the cancer as they can. It worked for me and I went into remission. I was in remission for a year and a half.

Some of the most difficult times were going to treatment in another town, driving back with my pic line all wrapped up in time to pick my boys up from school, get home, help with homework, make dinner, clean up, get boys baths and ready for bed so I could finally lay down. Some of the surprisingly easy parts of chemo were my chemo team, the people were all so nice and helpful and would work with me for my boys' sake. Everyone went above and beyond.

A year after I was diagnosed my husband and I got a divorce so I was a single parent having to deal with my cancer and treatment by myself. My ex Husband was wonderful and helped all he could. My family helped when they could so I had a great support system. Having CLL is HARD, as any cancer is. It changes the way you think and feel about yourself, your family, life and all that entails. I was and am determined not to hole myself up and not live life. Even at my weakest and sickest I still did what I had to do to keep my family intact and functioning as close to normal as possible. There were times during treatment that I was really sick and had to take it easy and my boys understood that. I think they gave up way too much of their childhood because of treatments and me being sick but they never complained.

Venita And Her Boys

Venita and her Boys

I am on maintenance treatments now and have been for a couple of years. My CLL hasn't progressed much so maintenance is working for me so far. I take treatments every two weeks and have been taking biweekly treatments for over a year and a half now and will continue as long as it continues to work. I am in semi-remission.

I have met some of the most wonderful people through this journey. On the What Next site, the cancer patients, their families and so many great doctors and nurses. I started crocheting during treatment to help pass the time and I give away what I make. I enjoy that and think they enjoy receiving it.

For someone newly diagnosed I would recommend a good oncologist. They are invaluable! Mine has saved my life more than once and I love her. She makes sure I am seen right away and get the tests I need as fast as possible, she's very good and I am thankful. I found What Next from our cancer center here. Someone from American Cancer Society gave me information on the site and I have been a member since then.

Do you have an inspiring cancer story to share? If you are a WhatNexter, contact us and let us help you inspire thousands that will see your story! Email us here about sharing your story. 

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