Be your own patient advocate! I was “too busy” with work and “too busy” being a caregiver to find another Primary. I kept going back to the same doctor. I kept taking a list of symptoms to him for over 15-years.

Since my 20s I have had weird infections (respiratory, intestinal, skin), enlarged lymph nodes, severe fatigue, to list a few. My White Blood Count (WBC) was always high and out of range. My Primary said I worked too hard, I traveled too much, I didn’t get enough sleep.

After breast cancer I had radiation pneumonitis and several rounds of pneumonia (because of undiagnosed CLL). I took that list of symptoms to my radiation oncologist during breast clinic in February 2018. Had enough of my Primary not listening and finally I had time.

His jaw dropped! He had tears in his eyes. He immediately scheduled bloodwork and scheduled 2 biopsies. Two days later I had 3 biopsies. Had to be taken by a wheelchair to my car because the fatigue was so severe.

Received the diagnosis of CLL BY PHONE! FINALLY had the answer to what had been going on with my body for all these years! Now the fight was on!! I had been almost paralyzed in my body — knowing I was really sick but not having the answer. I pray this doesn’t happen to anyone else.

Interesting note: I went to apply the brakes as I was leaving the top of the parking garage after having the biopsies (drove myself). My brakes went out! It was a six speed. Luckily I always drove manual transmission cars. Used the emergency brake the entire way home. And so the wild ride of CLL had begun. I’ve been using the emergency brake ever since.😂🤦‍♀️

worldclld23 #WithTeamCLL #mentalhealth #thisisbloodcancer

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