The most difficult decision I will ever make
I have pretty much 5-6 days to make a decision about my treatment going forward. I have spent many hours and days researching and speaking to many people about a variety of issues related to my specific diagnoses. Thinking and obsessiving a lot. The particular compromising challenge for me is that I am mentally ill. I tried to simplify my life to such a point where I didn't have to make major decision and avoid stressful situations and people. Because my decisions would all be skewed and influenced by a fractured mind and a flawed thought process. I suffer from Major Depression PTSD, OCD, and worse of all Panic and axniety disorder. The only medication I am able to use is clonazepam for anxiety. My depression is treatment resistent.
I also have physical challenges. I was diagnosed with a mild for of gastroparesis, IBS-C, and tinnitus. I cant take anti depressants because it causes the tinnitus to get worse. I thought having a loud and intrusive ringing sound in your head was worse enough. I was wrong. I also have been diabetic since a teenager. My kidney functions are low, I have bad neuropathy in my feet, and im slightly blind in one eye. I have damage to the vagus nerve which can cause a whole host of issues but probably most of all is slow motility, painful digestion and flare ups that leave me constipated for weeks or even close to 2 months.
Ive been taking tramadol and reglan on and off, since 2013. It baffles me noone thought to say hey maybe we should give him a CT scan or MRI. I was just told I have IBS and its nothing they could do and just take miralax, gasx and tramadol. Right now im on digestive enzymes, probitotics, and a strong laxative called Amitiza.
I thought I was doing the right thing. Being persistent and aggressive despite not having medical insurance. Id go to the ER, wait for 9 hours, lay in a bed for another 3-4 hours waiting for a doctor, and they jus tell me the same thing and give me a script for miralax. I did get them to x ray me a few years back but everything was clear. I took several stomach emptying studies and even though they showed my stomach was slower than normal they said it was manageable. Told me to take B-12 vitamins and find a mexican pharmacy where I can purchase Cisapride. A black listed drug not approved in the US.
I had a endoscopy/stomach biopsy a couple years ago and had Pylori bacteria and redness in my stomach walls. I cleared it up taking anti biotics. And then at age 39 I decided to... well demanded a colonoscopy. And after the test everything was and I quote "perfect." No polyps, no spots, no bacteria, it was all clear. This was about 8 months ago. Fast forward to a few weeks ago, im having the worse stomach pains ever. I know when tramadol doesn't work, something is wrong. I had to schedule 3 Doctor appointments, the first guy gave me zantac and more reglan. The 2nd guy told me to see a gastrologist, and finally this compassionate gastrologist pressed down on my stomach, to which i responded with a loud groan, and scheduled me for a CT scan. Two days later I took a CT and I left feeling optimistic that finally we were going to get to the bottom of these relentless abdominal pains, and 3 hours later I was told I had a 4.7 cm mass in my colon and two 2cm lesions on my pancreas.
The shock has worn off after about 20 days and my mental health is cratering. My depression and anxiety has never been worse. Even im stronger and more resilient than I was in my 20's, this is just new territory. I used to fear losing my job, or my car breaking down. It would take me months to recover from even the most trivial things. I had so many anxiety triggers. Panic attacks were just a normal part of my life. I had very intense ones just going for a colonoscopies and scans even though insisted. I would often reschulde the procedure for a week later due to anxiety. Now I have realized my worse fears. My nightmare come true. The worse possible thing someone with debilitating anxiety and depression can go through. Fear of dying itself.
Since my particular case is quite uncommon, colorectal cancer metastasizing to regional lymph nodes and to my pancreas, my Oncologist, like I assume most in his field wants to do the conventional route. Cut out part of my pancreas and most or all of my colon, install a colostomy bag(as bad as my OCD is its the ONLY thing i haven't google searched) and blast me with the highest possible dose of chemotherapy drugs possible until I glow in the dark.
I see what it does to people. Ive watched countless youtube videos of cancer patients vblogging their entire experience. By the end of it, theyre unrecognizable. I remember what it was like for my aunt, who at the time my mom would visit to check on her, only to find her laying in bed vomit on the bed sheets. With this look of exhaustion and deliriousness. I never forgot the stare in her eyes as to say, please help me.
I know I just turned 40. I think a lot of people would say that is motivation enough to fight with all you have. Of course I will fight. I will try very hard, the best I can. But if my best is not enough, I cannot die feeling guilt and regret. I know chemotherapy is different for everyone. But I know myself pretty well. Im already a very sickly, mentally and physically compromised person. I will commit to one or two cycles. But if I feel the side effects are making me suffer in a way that feels like im being tortured, then I dont think the choice would be that difficult to stop treatment. Painful yes, but not difficult. Yes im 40, but I have had a very lonely insignificant dull existence. And there will be times when im taking anti nausea medication, sipping on water, eating small bits of whatever I can hold down, and God forbid I catch a cold. Ill sit up in my bed, probably staring at the floor trembling and ponder what im doing this for. A few more lonely, insignificant years of life? I don't have a wife to wake up next to, or to hold my hand and keep encouraging and supporting me. I dont have kids I can stumble across the hallway at night to watch sleeping to remind myself I want to be there for them when they get older. I dont have a mother who is the type of person I can talk to, hug, having meaningful conversations with, without being ridiculed about being deeply distraught. And because shes religious and im agnostic, shes easily annoyed at the fact I dont believe in miracles. Im stage 4 with cancer spreading to my pancreas. I would be very lucky to live another 3 years. I think I would rather go buy a dog, increase my clonazepam and tramadol and live the last 3-8 months i may have as comfortable as possible. Instead of the rinse and repeat of 6-8 months of being sick as a dog for 2 weeks, recover 2 weeks. To maybe live another year waiting for it to come back. Fearing every scan result.
I have been privy and awed by many of the amazing and strong people of this forum. That have a will, grace, sense of humor, and passion for life I cannot relate to. Thats why you are all survivors. You cannot go into a battle without those elements. Not to mention being a lower working class male with no insurance.
When I see my oncologist Monday, if hes willing, I want plan A to be to commit to metronomic low dose chemotherapy in pill form and see if I can even tolerate that. Maybe a few cycles of radiation. See if we can shrink the mass and two lesions. Then surgery. And again with a low dose regiment with a drastic change in diet, and loading up on garlic and cruciferous vegetables. And go from there. And whatever happens happens. If he doesnt agree to it and gives me a ultimatum to just chop out my organs and blast me with the highest dose of chemo possible, then ill probably try that too, And fail. But if he does agree which I believe they are suppose to tailor your treatment to your specific needs. The maybe I can take back my hijacked mind one day. Stop waking up thinking about cancer, spend hours a work grieving about cancer, come home researching about cancer for hours, watching videos of scientists debating the afterlife, and pondering my own beliefs and mortality. Maybe I can just come home, enjoy my dog, watch my favorite shows, and sleep more than 2 hour increments. Focus on having a peace of mind, accepting my fate, and forgiving myself. Seems like I have to go through a lot, for so little. Having to be treated with something that will make me feel like im dying just to keep me alive. Simply put, I just cant accept protracted suffering.
I hope its not as bad as it seems. But its always worse than I hoped.
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