In Jan 2022, I was diagnosed with Esophageal Cancer after an ultrasound on a hernia showed something unexpected. A endoscopy confirmed the tumor. Within a few weeks I was undergoing daily radiation and weekly 4+ hours of chemo.
8 mos after discovery I was sent to MAYO for a complete Esophagectomy. My esophagus was removed, and my stomach cut up and remade into my esophagus. After 2 wks I was sent home with 12 open incisions/drain holes and a feeding tube.
Due to the lack of available medical assistance, I was unable to get daily wound care which was required twice a day. Our local agency was only able to send someone out once a week, which often got canceled due to their oveloaded work load. It was a daunting task to even reach most of my wounds much less clean them and pack them twice a day. It took much longer than expected to heal. At which time I was severely limited in what I could do, much less risk exposure to infection.
10 wks after surgery, the feeding tube was removed, and I thought I was on the way to healing. I was told 2 wks later that I would have to start immunotherapy within 2 wks, that it would be once a month and last at least a year.
It is a form of chemo that is meant to target anything in your body that shouldn’t be there, rouge cancer cells and or anything else. To date, I have had six treatments and have been sick for months. My first treatment I broke out in shingles, then had an episode of anaphylactic shock, followed by severe flu-like symptoms, on my 4th infusion my thyroid started failing. The meds for my thyroid have caused so many side effects we had to stop them. I suffered such side effects that severe shaking caused me to break 2 teeth. I now need crowns.
Since it is a new year, all of my deductibles have to be met again. Each immunotherapy is $68,000.00 which my copay for the year is over $10,000.00.
I haven’t been able to work a lot so it is taking me longer to build up my qualifications for coverage. I am looking into trying to get disability, but it is next to impossible to get even an appointment to see if I qualify. Cancer is overwhelming enough, but the ripple effect it has on every aspect of your exisitence is daunting. I am a 62yo single woman who lives alone. I can’t do this alone, and there isn’t a St Jude for adults, and I only learned through this experience that the money people raise to fight cancer goes to research not patient care. I need help. I am emotionally, mentally and physically ill from all of this and can’t keep up. I need time to be able to focus on healing and I can’t afford to not work, but also can’t work several days at a time due to side effects of various components of immunotherapy and my body still adjusting to not being able to digest food normally. I am trying my best to survive, and I am not doing well.
5.27.23
Thank you to everyone who had donated, I have sent payments to both medical facilities who I owe. It’s small dent but what a relief to be able to do so.
Have had a few setbacks. Immunotherapy continues to be an issue. Was to have a treatment last week, but my labs and counts were a mess, so it was rescheduled to this week. Although some of my numbers improved some didn’t.
My team made the decision to hold off taking me down again, to give me some more time to see if the other numbers can come up. I will have a new set of labs done again on Tuesday, to see where I am.
I have been doing a lot of research, have made some adjustments to my diet, and when I take the meds. However, a lot of the information is conflicting. Hopefully I am on the right track.
All of my issues are because of the immunotherapy, or because of the meds to treat what it has affected. It’s kind of a can’t win situation with some of it.
Hope my numbers have improved come Tuesday, as we haven’t discussed what is next if they haven’t.
Fingers crossed, the Cancer Center Social Worker is available when I have to go back on Tuesday, as I just missed her on Friday when they decided to not do treatment.
Thanks again everyone.
Pattie