This past week was certainly an experience. Following my appointment with the doctor and getting labs done, we were waiting for some definitive result that the severe gastrointestinal issues I was experiencing were due to immunotherapy or due to a bug, an illness, or a parasite. The results never came, and I called on Friday only to find that they weren’t ready. I was bummed and prepared myself to brave through the weekend. Friday evening, I hit my limit; I was crying and frustrated with the situation and the lack of relief. I wanted to go to Walgreens by myself and cry. Have you ever just needed a good cry in a parking lot? That’s what I needed. However, I was not afforded that opportunity, as my family member was concerned and wanted to tag along instead. What a bummer. That trip was not cathartic at all and only added to my frustration and upset. I just wanted time to myself, and instead found myself catering and modifying my behavior to appease and comfort others.
This time really pushed me to my limit, and I really noticed the short fuse I had – how could I not when the main feeling was that my intestines were being wrung out and abused inside. I picked up my medications for the intestinal pain (did you know there are medications to treat the gut pain? The pain is actually coming from the intestines engaging in a spasm movement, and the meds relax it – and goodness what a godsend that was) and made my way home. I prepared myself for a night in and hopefully sleeping so I could be unconscious and not have to deal with the symptoms. Around 8pm, I got a call from the oncologist checking in on my symptoms – he said that based on the increased instances, the increased pain, and the symptoms severity that I should go to the ER and get the tests done there as the results would come faster than waiting for the work week and I could get my symptoms addressed and get additional hydration to help my body navigate this situation. He asked that I call him back when I arrived so he could speak to the attending physician. I cried when I hung up the phone – I felt such relief and such appreciation for the doctor. My family was ready to go, and we headed to the ER. The doctor was kind and ready – it was fascinating to watch the doctor speak with the oncologist and see them interact; they’re so smart, and truly, I felt safe. I had to provide a stool sample, and man, it was such a mortifying ordeal – nurses are really on another level. It was petrifying, but I knew I needed to get this done so I could get some answers. While we waited, they provided me with additional hydration, and I just prayed I could get some relief. I would either start antibiotics or I would start steroids. While we waited, I watched the original Jurassic Park movie and tried to focus on the scenes and not the pain. After a couple of hours, the doctor came in with the results – there were no indications of a bug/ illness/ parasite in me; thus, the culprit was the immunotherapy. I was started on steroids and headed home. I am now on a 6-week regimen, and I hope this will help me heal and return to my baseline.
This ordeal was a lot, and I then had to wait until yesterday to meet with the doctor to discuss next steps. It would be incredibly dangerous for me to start the treatment back up, so I’m left with both relief and anxiety. Does this mean my toolbox of resources to fight cancer is limited? Am I protected enough? My body wasn’t strong enough, but is that the right perspective? Frankly, I am too ignorant of the science behind immunotherapy to truly understand what this means for me.
I am left feeling grief and feeling relief. I am left feeling ragged and still in pain. This will be a long road to heal – I have 5 weeks left of the steroids, and I am still feeling symptoms, and right now, just a bit concerned I have a sore throat, unrelated, but still. I am still at the start of radiation therapy and exhausted already. I’m pushing through, but it’s becoming so prescient just how absurd and ridiculous it was that I actually worked while going through chemotherapy. I am feeling self-betrayal. The self thoughts swirl – why are you like this? Why did you do this? Well, it’s what I thought was best when I was pushed into a corner, being financially unprepared to take time off. I am facing the decision of whether work will approve my unpaid time off, but I am nervous about the endeavor. I need this time off, but I am also realizing how unprepared I am financially. How many others are in my shoes? Goodness, I suck at being an adult.
It’s nearing Friday, and I’m excited for the weekend. I am nervous as I don’t want to overdo it, and I recognize I am still limited by my symptoms. I may not have the gut pain as much anymore, but I still am not out of the grasp of these symptoms yet. Immuno-induced colitis is no joke – though I will likely make a joke about it soon enough to lighten the mood with the caveat that only I or someone who has had it can make the joke lol. Yet another weird experience to relay in this cancer treatment process. The absurdity and weirdness continue. I hope to be able to celebrate and simply spend time doing nothing. I am exhausted, and I am seeing on the horizon the end of this treatment in the next couple of months. Cancer treatment has taken so much from me in an attempt to preserve my life and give me a fighting chance. I am thankful for the insurance and the ability to even receive treatment. I am grateful for my life and the support I receive. Cancer came in, destroying and uprooting everything. Cancer treatment has helped in trying to get me to get it all back in order, or at the very least not destroyed. And now, after treatment, I have to determine what remains, what has been destroyed beyond repair, and what merits restructuring. Questions like, Who am I really? They are being brought up. I think the biggest thing of all for me is the job front. I don’t want to continue here, but I still feel as though I’m trapped. Considering this, I need to obtain health insurance, as I will now have to monitor my health annually. Mammograms to ensure I am clear, testing, and scans to ensure that there is no recurrence. Gosh – it’s just a lot. Again, I feel relief, but now I am grieving. It’s a lot, and I’m not sure what’s worse. Maybe they’re equal in my mind – the diagnosis and what remains. For now, I will have to focus on radiation and ensuring I can get through this treatment component.
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Liminal Leisure 
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