My CLL Diagnosis

Last updated: October 2022

I was diagnosed with chronic lymphocytic leukemia (CLL) in 2015. My cancer was discovered at the same time that I was diagnosed with ovarian cancer. Due to the symptoms that I was complaining about, the doctors did extensive blood tests.

Blood tests indicated leukemia

I had a high white blood count. That was the first indicator that I had leukemia.

The other symptoms that I had were running constant fevers and chills. I was having extreme pain in my bones which I still have all the time and I was starting to bruise all the time. So, we just really started to work on finding out what the actual problem was.

Once we found out that I wasn't just sick with the flu and that I had leukemia, the next thing of course was that I had to have bone marrow biopsy. That was HELL (lol!) but it was necessary and after the biopsy came back, we found out that I had chronic lymphocytic leukemia.

The process

I was already going through chemotherapy for ovarian cancer, so I didn't initially have treatment for the CLL. I was on W-and-W (watch and wait) we didn't feel it to be necessary at the beginning but for me it ended up becoming necessary within probably a year. It started to take over my body, I was just getting weaker and weaker. Unfortunately, I just wasn't getting better.

So, I had to work with my hematologist and several other specialists to come up with a plan of action to save my life. I'm grateful for those who've been helping me since it has been seven years since I was diagnosed. CLL is a disease that they say you can live really forever with but some people still do die from it. Considering that I have a unique case, it has been a challenge for me to function with blood cancer. My prognosis isn't as hopeful as others, but what matters most is that I am.

My advice for coping/surviving CLL

  1. Ask all the questions that you need to ask. There's never a wrong question or a small question.
  2. Find the right health care professional and create the medical care team that is best for you and your needs. There's nothing wrong with getting a second, third or even fourth opinion if needed. You may just need to change your medical team all together and that's ok too. This is your life. You must live it. Nobody else has to live it and survive this but you. It took me four times to find the best doctors for me.
  3. Find the best support system for you. Keep in mind that all support systems are not created equal. It may not necessarily be your relatives. It could be friends, co-workers, an online community or real-life support group. However, you find it, embrace it!
  4. Don't be ashamed to ask for help. At some point you will need it. That's not a failure or you letting anyone down because you can't do what you used to do.
  5. It's ok to say NO.
  6. Relax, Rest, Release!!! The only way to heal is to rest. You have to rest in every way the cancer is attacking you and that is physically, mentally, emotionally, spiritually.

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