I have now found myself in a place that I never wanted to be especially just a week or so later surrounded by a circle of love and friendship along with far away friends and family holding my hand both physically and virtually. You can only rationalize symptoms and data for so long and I knew on Thursday after my doc’s message that things were not going as expected. It is a scary place to be when one moment I can hike for an hour and the next day I am unable to waddle up the stairs. Appearing to be pregnant with nothing other than cancer is also into a very positive reminder of the situation.

On Monday, Jim and I took the drive to UCLA for my scan. Besides what we were both experiencing what is commonly called scanxiety, I was physically unable to sit in the car. I could not bend, sit, move in any position. I could barely whisper a word since I later learned that the fluid compressed my lungs. It wasn’t possible to hide the pain from my boys. Whimpering and tears falling were not the music we wanted to hear for 3 hours while Jim drove us. I felt horrible for Jim having to try to drive in non stop traffic, passing multiple accidents, and hearing my whimpers. I tried every trick to take myself to another place, but gasping for air made this more challenging.
Of course, my journey has had its share of encounters of unacceptable healthcare situations. Remember the blood letting a while ago with one nurse not willing to do her job at a pet scan? This UCLA scan exceeded that event by a landslide because all 9 staff members (some nurses, technicians, and admin) all failed at every aspect of their job. I have given up long ago about healthcare workers enjoying their jobs. I am a firm believer of always informing managers when anyone goes above and beyond to show compassion and care. I do have low standards in this regard, but I have a zero tolerance with any healthcare worker who is not doing their job and impacts the standard of care and my treatment. Without having to re-live the entire ordeal, the highlights include lack of instruction or care for drinking contrast, lack of care for any of my allergies to tape and adhesive, improper access of my port including spraying disinfectant in my eyes, dripping down my neck while I had to sit like that the entire scan (imagine having an itch on your nose and being unable to scratch), and to top it off was the nurse who responded to my concerns with, “I’m only the nurse” and yelling angrily when asked about proper instructions about drinking barium “beverage”, “don’t take your frustrations out on me.” The unfortunate result of this scan is that the lesion that grew in my pelvis was not lit by contrast and contrast did not reach the lower bowel. Now, if I approached my scan like I do every aspect of my treatment, I would have found out how much I should drink, the timing of the drink, and the entire process, but since I am not a fake scan technician or even a fake nurse, I never “learned” these details because for the past 4 years a scan is a scan is a scan. This was not debulking surgery. It was supposed to be simple as far as procedures go. What was my sunshine moment for the day? Talking to the patient advocacy at UCLA and Director of CT who assured me this would never happen again to any patient.
I saw all the images the next day with my doc. Also, prior to the scan and horrific drive, I called my doc who had seen a photo of my belly (we sent via email) and begged him to have me change procedure to Monday. He made a lot of effort, but sometimes things are out of his control. The fluid I had seen on my scan was in every area of my abdomen surrounding every organ below and above. The entire cavity was filled in days.  Thank goodness he tells me I never smoked and was not obese. Good, 2 positive things! Also positive is that I have no metastasis in lungs or outside the abdomen. It is difficult to be positive given this is the worst scan I have ever had since my diagnosis in 2010, but have to say that I’m happy to be alive. Perspective is what it is all about and focusing on the moment, making the most of each day, AND not sweating ANY small stuff.
Tuesday came for the procedure and I knew I had to be in a better place for this process. I also knew that nothing could be as bad as Monday plus this was an outpatient procedure. My wonderful doc was there waiting for me, grabbed my hand and told me I will be able to breathe and get relief. At that time, I had no idea what the scan showed. We looked at frame by frame of the scan after my procedure. Procedure had the usual high level of competence expected at UCLA plus compassion and understanding, a plus!
Now, it is Friday. I’ve had a fever since Wednesday. I’ve learned that all this fluid pressing on my lungs can cause these pockets to possibly become infected. The trick is to avoid pneumonia. Not that dreaded illness…bad images appear in my mind from May 2013. My doc wants me to get drained again Monday, so here goes that effort. Tuesday I’m scheduled for procedure LOCALLY!!! Here is what I know: I hate that this has caused me so much down time. I’m in bed unable to take even multiple trips up and down the stairs. I hate that this impacts Jim’s work, Alex’s every day fun, and has caused me to break dates I’ve made for our family. What I hate the most is that my big plan for daily life is to always be as “normal” as possible is greatly impacted again. Even though the normal has changed, I am sad with this situation. What I also know is that I’m a trooper, more than a trooper with a high tolerance for pain, and I know how eating is important even if it takes all day to eat a bowl of soup. I also know that I have all of you who continue to cheer for me, pray for me, send me great messages in text or email, and I’m surrounded by love. I know NEGU and I know I can find sunshine in each day even in these days. It can be the photo you send, the message, the text, the music Alex plays, the laughter of my boys rough housing. These sunshine moments keep me motivated. Please I encourage you to listen to your kids, the sounds around you, and appreciate every moment. Don’t sweat the small stuff…it really doesn’t matter! Take it from me!

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