It's been a while since I've blogged on my site. I know I've said this before, but it's been hard to feel inspired to blog when I am still watching and waiting per my doctor's recommendation. However, the psychologist I started seeing recently told me that one of the best things I can do to reduce the anxiety in my body is to make myself more vulnerable. Even if I don't have any new news from imaging or labs, she said I still had many emotions I was dealing with that I should share. So, here goes.
Updates
I last posted in May 2019, about the time I had my liver biopsy done. In the nearly two months since, my biopsy scars are healing nicely, but I am still feeling every other symptom just the same. The shortness of breath continues to overcome me even if I just walk up and down the stairs once to put away laundry. But I have been determined to push through it and have averaged about 3 miles of walking each day over the past month or so.
My weight has stayed around 155# for the most part no matter how many (or little) calories I consume or how much I move. This has been hard in more ways than one. Even though I'm technically healthy as far as my labs, blood pressure, etc. are concerned, I have trouble looking in the mirror. The worst part about this feeling is that I feel guilty for feeling this way since I know my weight is not that high. I feel shame, guilt, and stress from this all at once. The body image issues I once had in my younger years have come back full steam and I have to fight off these feelings every minute of every day to stay sane.
Dealing with my feelings
The fatigue I've been feeling the past two years continues, but I try to push through. I've been keeping myself occupied with work. Writing, working at the hospital, doing household chores, and taking care of my puppy keep my brain and body distracted. This helps me from overwhelming myself with feelings from one extreme to the other that I'm not sure how to deal with right now.
An example of this is that sometimes I'll just be sitting in the car driving home from the grocery store and start crying for no known reason. Or I'll wake up in the morning with a nagging feeling in the pit of my stomach that will lead me to make a phone call to a family member that I will later regret. No matter how hard I tried, I had a deep down anger inside of me that I couldn't brush off. After months and months of my husband trying to get me to talk to a professional about these feelings, I realized I couldn't handle these feelings on my own.
I googled "chronic illness psychologist near me" and read through each profile. I tried to listen to my gut and chose the top five after reading through their reviews. There was one that stuck out and I called and set my appointment. After the first session, I knew she was going to be able to help me. She took her time and tried to understand my past experiences. She looked for a proper diagnosis for me to base my treatment on (panic disorder and secondary anxiety disorder) and after each session I would receive a new cognitive behavioral therapy technique to try.
It's only been three sessions so far, but I feel like real progress is being made. She helps validate my feelings about what I'm going through. And when I doubt that what I'm dealing with is important, she reminds me that I am human and allowed to feel what I'm feeling. That is something I realize that I haven't allowed myself to do over this past two years, and especially in the last four months.
What's next?
My latest MRI this past week showed a slight growth of the tumor from 8X8mm to 12X8mm over the past few months. They still think it's a neuroendocrine tumor, but nothing else is known. My surgeon is reviewing all of my labs again to try and figure that out. I have a repeat MRI scheduled for September since a cut-off measure of 2cm is needed for a consideration of surgery.
I'm not that great at waiting when it comes to this health journey since I have been very patient for the past two years. So, I'm grateful that last week I received a phone call from the previous oncologist's office I visited (where I didn't have the best experience) to see if I was interested in a PET scan with gallium 68 dotatate. I asked if it was approved by my new insurance and they were able to get a pre-determination for it.
I was hesitant about making an appointment at this facility because of the not so good experience I had at the office before, but realized that this was perhaps my only chance, besides in a surgery, that I would be able to diagnose this mass. This test was very new in the healthcare world, and was just being accepted by insurance companies as a way to help diagnose and monitor neuroendocrine tumors.
I had been asking my surgeon to order this test for months after my personal research online, but to no avail. Therefore, I went ahead and I will be having the scan done in about three weeks. Hopefully it will provide confirmation of a diagnosis for this mass on my pancreas.
So what do I do until then?
My psychologist told me that since this situation is not one I have much control over, that I have to keep taking steps to find answers to reduce my anxiety. Ask my surgeon and other doctors questions, get the tests done that will help me figure out what this mass truly is, and maybe even get a second opinion from another surgeon. She said it would help make the three months until my next MRI go by faster and will help me to focus more on finding a resolution to this health issue instead of letting the internet feed my fears.
Here's what I've learned over these past two months to help control my anxiety...
-Accept your feelings. They are your feelings and they are nothing to be ashamed of. We are all human and are faced with different obstacles in life. Just because you don't think your obstacles are that big of a deal, they are still your obstacles and you need to deal with them so they don't eat away at you.
-Let your feelings out in some form that is healthy for you and those around you. Just like you shouldn't "drunk text" or call anyone, also don't "panic attack text" or call anyone. Instead, find a quiet corner, breathe deeply in and out for a few minutes and then find an outlet for your emotions. Paint, write, dance, sing, clean, etc. or see a psychologist or other counselor to talk things out. Don't let your stress overcome you and potentially ruin your relationships with others.
-Reframe your thoughts. If you've been feeling negative for a long time, then that is all your brain knows how to feel. Therefore, you need to work out your brain and rewire it. Each moment of each day, be aware of your thoughts. If you start to get down on yourself, reframe your thought to something positive. The same goes for what you say. If you have a tendency to talk to yourself negatively, then try to catch yourself doing it and and reframe your words. For example, I have a tendency to make negative comments about my body. So when I do this, I try to say to myself instead, "I may not be happy with my body right now, but my body shape does not define me as a person." Eventually I hope to be able to say that I am happy with my body no matter what, but I am not there yet, and that's ok. This rewiring of the brain does not happen overnight.
-Be patient. This is a hard thing to do, but when you are dealing with something that is not in your control, then you have to be patient. To help reduce anxiety and stress during your time of patience, try to do at least one thing each week to be proactive in your situation. In my situation, I made the PET scan appointment this week. Next week, I plan to see my psychologist again and talk things through. I'm going to try and blog once a week too to help acknowledge anything I may be feeling so I can get the feelings out and reduce my anxiety.
Until next time, sending positive vibes for this next week ahead and Happy upcoming Independence Day!