Nov 10, 2019 Latest post:
May 17, 2020
Welcome to Paula's CaringBridge website. I am using it to keep family and friends updated in one place. I truly appreciate your support, words of hope and encouragement, and your faithful prayers. It makes me feel like I'm not moving through this journey alone. Thank you for visiting! You may wonder why I chose to call this site "Pursuing Vim & Vigor" . I chose the title because I am in pursuit of my energy and my "vim and vigor" that I once knew.
I was diagnosed with Chronic Lymphocytic Leukemia (CLL) in October 2018 when my pre-op lab work came back abnormal. At the time, I was also scheduled to have surgery on my left rotator cuff. I ended up having the surgery one week later after going through a number of tests, imaging and lab work. It was a shock to learn of the diagnosis- Blood Cancer. Leukemia. But I was reassured at that time that it was slow moving cancer and there was no need to begin treatment. The plan was to "watch and wait," and I was monitored by lab work every three months. I met people and heard of people that had CLL and they went for years and years without any treatment. A common comment I hear was "If you had to choose a leukemia this was a good one!" I was having some symptoms that became more and more obvious, the biggest one being extreme fatigue. CLL was hovering on my mind, but life went on. Our family had a big move in April 2019 and in June we witnessed a beautiful wedding of our son, Reid to his new wife Grace. Life was good, and it was busy. I was working and taking lots of really long naps when I could. I wasn't feeling like my old self that was on the go and multi-tasking all the time. I could tell that my life was slowing down, and I was beginning to learn to say no to activities.
On July 9, 2019, I was at one of my 3 month check ups. My lymphocyte count was creeping up, but my oncologist, Dr. J ( I adore this man!) thought we could hold off thinking about treatment until my next 3 month visit in October,2019. So off I went to continue on with my life and CLL hovering in the background.
On August 15th, I had another phone call from Dr. J, and he had been reviewing my lab work. He wanted to see me the very next day to discuss my treatment options. My lab work showed that my lymphocyte count had begun to double and change at a faster rate. We discussed treatment options. There was one option that had just been approved by the FDA in May 2019, and I would be Dr. J's first patient to use this treatment therapy.
The drugs were not new, but the combination of the two was a new therapy treatment for CLL. Currently I am taking Gazyva (Obinutuzumab) infusions and am taking a chemotherapy daily pill called Venclexta (venetoclax). My therapy began with the infusion of Gazyva every 7 days for 4 weeks. At week 5 I did not have an infusion, but I started my daily chemo pill of Venclexta at a 10 mg dose. We will increase the dosage each week until I reach 400 mg per day. On Week 6 I will go back for another Gazyva infusion. I will continue the Gazyva infusions monthly for the next six months. The Venclexta is projected to be taken daily for one year at the 400 mg dosage. I began this treatment journey on September 9th, 2019.
You may be wondering what is CLL? CLL stands for chronic lymphocytic leukemia. It is a type of blood cancer that involves lymphocytes— white blood cells that help fight infections. When you have CLL, abnormal lymphocytes build up in the blood and bone marrow. Over time, these abnormal cells crowd the healthy cells. The result is fewer healthy white blood cells, red blood cells, and platelets. This leads to problems such as infection, anemia, and excess bruising and bleeding. Abnormal lymphocytes may also build up in lymph nodes, the liver, or the spleen (an organ in your abdomen). This can lead to swelling of these organs. Symptoms are:
• Weakness • Feeling tired • Feeling short of breath • Weight loss • Fever • Night sweats • Enlarged lymph nodes (felt as lumps under the skin) • Pain or a sense of “fullness” in the belly (especially after eating a small meal) • Infections • Excess bruising and bleeding