“But if you close your eyes, Does it almost feel like Nothing changed at all? And if you close your eyes, Does it almost feel like You’ve been here before? How am I gonna be an optimist about this? How am I gonna be an optimist about this?” Bastille

Finding my balance, finding my perspective, I was lost when I heard that my tumor marker hit an all time high of 1470 on last Monday. I did the usual analysis only to find that the data wasn’t giving me what I wanted. Each time over the last 3 plus years when I received chemo, my tumor marker always fell even if just a few points. This wasn’t the case. I analyzed my symptoms comparing anything new. I looked at my notes. I was listening to my body, but it was whispering to me. Some symptoms gone and some new symptoms, but what did it all mean? I contacted my doc who decided to move up my chemo and also schedule a procedure to attempt a biopsy and drain the ascites. I never asked enough questions still feeling the weight of confusion of unclear symptoms and cancer growth. My mom arrived for the week. My usual refocusing or redirecting or even trying to detach myself from my discomfort wasn’t working. Every morning I was withdrawn from my circle of love and confused from my body whispering. I was foggy even though each day I found some happy moments. When overwhelmed by my new discomfort only described as heaviness, I was unable to push my awareness away for long moments. The routine that we attempt to maintain for Alex’s sake seemed to exhaust us all. I was happy to have my mom here to push me to enjoy each day something only explained by a mother daughter relationship. Words unspoken, but understood. Less stress of having to explain my thoughts, I felt alone, and wanted at the same time to escape. Not sure where I would go, but it all seemed too much. The confusion by the consistent unexplained caused me to be more withdrawn.

Arriving at Friday, I was definitely not asking the right questions when the doc explained the procedure to us. Lucky for me, my team of Jim and my mom added important information that I forgot. Hours and hours passed. Unable to find the right non allergic adhesive for my port, I had some itchiness. Each step was again a reminder that you need to always have someone by your side. I was pushed on the gurney to the procedure room and there was someone else in my room. I joked that this must be a 2 for 1 day, but all seemed to be confused. I wondered if the person on the other gurney was awake enough to know what is happening. I wasn’t hooked up to any sedation drugs yet. First, the Female Fellow walked in and all I can say is that I blocked out her name because #1 she had zero bed side manner and #2 she wasn’t the doc we all talked to for over 30 minutes in pre-op. She annoyed me with her attitude towards my questions. She annoyed me with her confidence which had no connection to me as a patient. As smart as she was, she was stupid in knowing what a cancer patient needed to hear. I demanded the first doc, I demanded the chair doc who my oncologist expected to do the procedure. As expected, the attempt for this biopsy was not straight forward. She casually explained what she would recommend which sounded like a major procedure, invasive, requiring much recovery, and she said it as if she was just going to brush my teeth. No big deal to her. I demanded to get answers from my oncologist, asked to call my husband, and thrilled I could get my act together to stand up for myself. My oncologist arrived and this long story short turned into having no procedure done. I have chemo on Monday and this procedure would not yield enough tissue safely to help me in any way. I was thankful that my oncologist was there. So, what ends up to be the longest day ever resulted in no clear answers again. The only news was that I had more pelvic ascites, but I never asked if this could explain my new symptoms. We left at 9am and returned home at 7pm. Lucky Alex was taken care of, so he had no idea about the saga.
Monday: I was exhausted. Was it due to the fact that it took 3 calls from me, 5 calls from Hoag, plus an email from my oncologist to get my order right for Monday from the local oncologist? Was it due to the fact that my 8:30 appointment, turned into an appointment starting at 12:30? Lastly, was it the fact that in 10 minutes I missed the mistake that I was given double the dose of  IV anti nausea meds? Just what I needed was an overdose of anti nausea meds. My favorite mixologist pharmacist attempted to lighten the mood by first saying he told them I don’t usually get that and that I will have a bad hangover headache which will now require more meds like Ativan for the anxiety and oxycodone for the pain?! I was beyond reacting telling myself that any energy required to address this should be reserved for Alex in a positive way. My silence had a greater impact with numerous apologies and recipes to avoid the constipation caused by this accidental overdose. Then, my tumor marker was even higher from Monday at 1700 (norm is 35 and my norm we think is 13) and now record breaking for me in the over 3 years of treatment. Shock, disbelief, and frustration barely describes what I was feeling. I was numb to this news and confused. Jim provided constant reassurance even though there were words unspoken for what this could mean. I know both our minds wander to what this rising tumor marker could mean. Instead, my rock star husband made a list of next treatments and focused on all things positive for me. We scheduled a call with my oncologist. Before the call, we decided that I must continue with this next cycle of treatment to know if it is working. We also decided that to be smart I will need another scan after that. My oncologist agreed and was equally agreeable with Jim’s list of next ideas, plus he will attend a conference this week and find some more ideas. So, we can do what we do which is take things day by day. Find the happy moments in these cloudy days and appreciate every single day no matter what!
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One Response to ““But if you close your eyes, Does it almost feel like Nothing changed at all? And if you close your eyes, Does it almost feel like You’ve been here before? How am I gonna be an optimist about this? How am I gonna be an optimist about this?” Bastille”

  1. donna rosin Says:

    i am touched by your blog…donna

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