Day Off....Not for this Girl!

I was raised to be a hard worker and we can all admit, I took that virtue a bit too far. For years, I would work 18-20 hours a day, 6-7 days a week. I never complained because I loved my work, school, and volunteer commitments that kept me busy. I am one of those lucky people who enjoy what I do for work....it is not only my professional but my personal interest. Everyone kept telling me I needed to slow down. I listed my major weakness as work-life balance and in the past few years really tried to begin working on that. Well then life threw me a curve ball beginning in 2016 when I began not feeling great. Not exactly the way to get balance but it was a start.

Now, fast forward to 2020. When I was diagnosed everyone asked if I was going to stop working....that seemed crazy. However, I did promise that I would slow down and take time off. So several weeks ago, I told myself to begin taking some time off. I committed to myself to take one day a week off so I could rest and get a few things on my personal to do list done. Oh silly girl.....so far my days off have had two themes:

Theme A: Work! Against my better judgement and opinions of those around me, unfortunately many days have resulted in at least a half day or more of work. My fault because I could be like the rest of the world and say it is my day off but it is hard to break some of my habits. 

Theme B: Sick! Several of my personal leave days have turned into staying in bed not feeling well or at the doctors.

It is as if life is continues to give me cruel jokes. I was so excited to finish my doctorate in the Spring so this Summer I could go through this house and everything I neglected finishing my degree and being sick these past few years. See in my world, when I too tired and just didn't feel like dealing with things at the house (like mail), I just put it in a pile and then in a box. I call this my piling system....yes, piling not filing. It is a system that works well. But then April 22 I got the first call that would change my course of plans, which was confirmed May 5.

So back to this week. With having Wednesday off for Veteran's Day I decided to take one additional day off too. Two days off this week!!!! On Wednesday, Princess Pancake had to have her annual EKG to check her heart murmur. We got up and took her to the cardio vet (yes, me and the cat each have a cardiologist). Things went great - no progression of the disease. Then I came home and took two naps. I was so tired from the morning outing. But that is OK, I had a back up day off. 

Thursday morning around 2:30 AM, I woke up. This is not unusual with my new senior napping schedule. My blood work had come into my portal so I took a look. Well, my while my white counts were good, my red counts were done as well as my platelets. The platelets were significantly low so I emailed my oncologist. I heard back at 8:10 AM and they wanted my local doctor who order the blood to weigh in. I explained that he only orders the blood because I ask him too. The nurse from Jax said they would like him to weigh in because he ordered it but if I didn't hear back she would send me to the ER, I just said OK. My local doctor said "we could talk about it at 4." I told his nurse that we could but meanwhile I would be headed to the ER to have the levels rechecked and then move forward with a transfusion, if necessary. This is one of the most frustrating things being 180 miles away from my doctor and locally, well I will say it has just been challenging and typically the answer is, "go to the ER." 

So day off number 2 was spent in the ER all day. The admin nurse was great because the ER was more full then normal and she said that with my compromised immune system she did not want me with others so my uncle and I were taken to our own waiting area while a bed opened up. The next thing that went well was they used my port.

 

Then the doctor I saw today was great. He was very comprehensive but did not over order tests, etc. I had blood work, a urinalysis, chest X-ray, and a CT scan with contrast. Some people take a day off and go to an amusement park, this is just as much fun, right!?! After a full day of running tests, the doctor came in to chat. It was concluded the pain is from the inflammation in my heart. He added a new medicine to help reduce the swelling. I have a UTI so that is one more thing I needed to deal with and was given medicine for that. In terms of my blood work, the numbers had increased a little so he did not feel that I needed to be admitted to the hospital. He suggested talking to a local oncologist about going to the transfusion center. Seriously, this is what I have been asking about forever and everyone to date said I had to be admitted. So, I asked him to look up the name of the oncologist I saw in the hospital so I could reach out to her because she seemed fantastic. After 6ish hours, we were on our way home.

I had a local doctor appointment this afternoon. We chatted. He explained that he had called the local oncologist I saw about my platelet levels. That guy told him I only needed a transfusion if my platelets were at 10 maybe 15. My count this time was 24 on Tuesday and today it was 38. Here is what I know about platelets: 

• a normal platelet count is between 140 to 400
• for chemo my levels need to be at least 60
• at 10 brain bleeds can happen and people can die
• when my count dropped to 14 and then 12, people were very concerned

This doctor is going to really hurt his patients. I am so glad that I am not seeing him. My local doctor, who I spoke to this afternoon agreed that she is a great doctor and he thought I would like her. I explained to him that me and the other doctor he sent me too just did not connect.

What a day! We grabbed food on the way home, ate, and then took a nap.

For tonight . . . I'm just sayin' XOXO