I know it's been a long time since I blogged, but I didn't have anything significant to report. Much of the month of May was spent waiting for insurance to approve this new oral chemo pill and then waiting for the "specialty" pharmacy to contact me and start delivering the package to my home.
Finally, the package arrived on May 18. Whew!!! Since I was attending a workshop at church on that weekend, my oncologist allowed me to start on Monday. I have read online that many fellow ovarian cancer survivors that are taking Zejula, take it in the evening to avoid nausea. Well, I certainly wanted to avoid that!!! So, I actually started on Sunday evening, May 22 after dinner. I went on with my normal after dinner activities and went to bed. Suddenly, at approximately 4am, I was awakened with the most excruciating headache. The pain was intense! Being in such pain, I was only thinking that I couldn't take anything due to also being on blood thinner. So, I did the only thing I could think of ... pray!!! Finally, I fell back to sleep. Well, that was an interesting night. The information I received when they prescribed the parp inhibitor did mention headaches as a possible side effect. I would definitely be taking a nap during the day!
And so, I took the 3 pills again after dinner on Monday night. Watched some TV and went to bed. Again, approximately 4am, I am awakened with another headache. Not quite as intense, but annoying non the less. Again, prayer was my antidote and I soon fell back to sleep. Again, add nap to the list of things to do during the day. I advised my oncologist's office of the headaches and they advised that I could take Tylenol. Thank goodness.
On Tuesday evening I took the prescribed amount of pills and heading to my chair to watch some TV before heading to bed. Usually between 9:30pm and 10pm, the eyelids start to close and I know to either get up and go to bed or just fall asleep in the chair. The chair usually wins!!! However, this night would be different. At about 9:30pm, while watching the Phillies, I am somewhat jolted awake. This wasn't just a momentary thing. I was fully AWAKE!!! I saw the end of the game, watched the late news and even some late night tv. I finally decided I needed to try to go to bed and see if I could sleep. After about 2 hours of restless sleep, I finally sat up in bed. I read, played games, and watched tv. My thought in the morning. This is going to be a really long day!!! With only a short nap during the day, I kept busy hoping that I would be so tired that I'd sleep all night.
Wrong!!! After only about 2-3 hours of sleep, I was again fully awake and unable to fall back to sleep. By my calculations, I had only about 5 hours of sleep in 48 hours. I could not go on like that. It reminded me of the sign at Animal Kingdom while waiting for a ride:
This is totally me! Except for the most active at night part. I need lots of sleep.
With this new, but not unheard of side effect, I called my oncologist's office and spoke with the nurse. After discussion, she suggested that I take the pills in the morning. So, as of Friday, May 27, I started taking the pills after breakfast. It seems like I'm much more awake during the day and sometimes can't even take a power nap. And my sleep overnight was much better, not great, but better. Thank the Lord!!!
Another thing that you need to do is have your blood drawn for 4 weeks in a row after you start taking Zejula. Oh goody goody!!! The reason for the blood tests apparently your hemoglobin, hemocrit, red blood count and platelets can drop quite significantly. If that were to happen, I might need a blood transfusion and/or a platelet transfusion or both. The blood test also tells them if you develop another cancer which is usually fatal. YIKES!!! As of the writing of this post, I have had my 4 blood draws and except for the 2nd one, my numbers are actually increasing. Praise the Lord!!!
The other necessity is a monthly visit with my oncologist. I had my first Zejula visit on Thursday, June 16. Everything was good except my CA-125 number which I was expecting to start going down actually doubled!!! My concern, which I stated to the doctor, was that the drug was not working. She advised that she would monitor the numbers and if necessary, order a CT scan in August. So, for now, stay the course.
Personally, I have been going through a Bible study in Romans using the First 5 app. I'm a little behind, but it's really good. I've been sewing/quilting on several projects. I help my Dad with his computer issues. I've had lunch with friends. And most importantly, I try to stay out of trouble. Sometimes I'm successful and sometimes ... well .......
As a Proverbs 31 Compel member, we are offered writing opportunities/challenges periodically through the year. The latest challenge began on June 1. It was to create a Bible study for their First 5 app on a selected passage in the Book of Ruth. When you sign-up, you are randomly given one of four passages. The passage I was assigned was Ruth 4:1-4. I have been diligently reading, researching, and praying. Yesterday, I sat down and wrote over 500 words on my passage. I'll be editing and editing until I submit it after July 1.
In other news, I will be starting back to work, part-time, on June 29. I'll be back on the same team, doing the same job. Although I've loved not working and setting my own daily schedule, I knew that the longer I stayed away, the harder it would be to go back.
Prayer Requests:
Back to work - June 29 - pray that I would remember policies, procedures, and formats
Writing submission - July 1-8 - pray that my writing would be looked on favorably
Blood draw - Tuesday, July 12 - pray for lower CA-125 and that other numbers would be good
Doctor appointment - Thursday, July 14 - pray that I have another good appointment
Only by His Strength,
Sandy
