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Elise Manion

Random Thoughts from a Hopeless Romantic

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Cancer

The New Normal

It’s been a while since my last post and the reason for that is that I needed time for adjustment. My mother put it like this, “We’ve been lucky for so long that it’s just our turn now.” She may have a point, but it still hurts like hell. Random attacks of tears are still something that I have to get used to. I’m not really a cryer by nature so when a jag hits, it hits hard. One minute I’m not even thinking about it and the next I’m crying in waves. I’m beginning to realize that all it takes is one random thought to get me going.

The consequences of having crying turrets is that my current manuscript is limping along, stalled out in parts. My Muse has begun creating stories again but my brain has an inability to process them, put them in order, or lay them out in a way that would make sense. I do admit that I had one really good day where a scene flew onto the page, but once it was there it just stared back at me blinking its eyes like, “Okay good. What’s next?”

I have no idea.

I do have the next few weeks off from my daytime job so I’ve set little writing goals for myself. Nothing too strenuous. I don’t want to sprain anything in my head, for crying out loud (no pun intended). I’m satisfied that I’ve managed to make plans to get something done. I made similar goals on our recent trip to visit family but, of course, I didn’t complete any them. I was with family after all but I feel better just knowing that planning to write had been on my mind.

In between the tearful chaos, there is the life chaos. My Man and I are empty nesters and have made room for Mom to move in with us. She’s still thinking about it. Most of her family is here but she likes to spend some time in the house my father built three hours away in a little farming community. It has good hunting, quiet days and sweet neighbors but, sadly, no family. When she’s there, she’s there alone which I don’t really like, especially since there was a snake in her house today! I thank God everyday for technology so that I can check on her… and so that she can look up on YouTube how to shoo a snake out of her house with her broom. EEEK!

For now we are just taking one day at a time, one breath at a time, one crying jag at a time. Until we can make any final decisions, life goes on in this kind of limbo without Dad here with us…which unfortunately is our new normal.

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The Cancer Won; Healthcare Failed

In a previous post, I wrote about my father’s diagnosis of metastatic melanoma to the lungs and liver. At that time it wasn’t known that the nodules had also spread to his brain. Though he fought the good fight, my father succumbed to this horrific disease on March 20th, just two weeks to the day after receiving word from his oncologist that the nodules in his lungs had grown significantly and that the treatment (immunotherapy) wasn’t working. The oncologist recommended hospice for the next month or two. Dad was sixty-eight when he passed away.

Melanoma is a sneaky bitch. In my father’s case, he developed a brownish spot on his cheek ten years ago. It wasn’t dark and we all thought it was just an age spot, even his general practitioner. He said he had a treatment that would “bleach” the spot so it wouldn’t be noticeable. It was an in-office procedure and the spot scabbed up and went away for a few months before returning a hideous dark brown to black. The doctor said nothing.

When Dad went to the dermatologist, it was found to be melanoma and they did surgery to remove it. He was left with a huge “z” shape scar but it healed so well that after a month or so the scar was barely visible. When they removed the section, it was determined that the cancer was “lateral” and that it had not spread. He would be fine.

That was three years ago.

Last year, my father developed a cough; a nagging, nonproductive tickle that was so bad that he would lose his breath. He had other symptoms, too, like shortness of breath and becoming exhausted after minimal exertion. He told his general practitioner, who told Dad not to worry, that he was only suffering from “the hundred day cough.” Then my father told his cardiologist, who monitored him for a possible heart condition, other than his high blood pressure and AFIB (irregular heartbeat). Still the cough persisted, but the cardiologist found nothing unusual otherwise.  Dad then told his otolaryngologist (ear, nose, throat doctor) and was told it was probably allergies. In the mean time, he kept up his regular appointments with his dermatologist who proceeded to burn off any skin lesions or irregular spots that were found on his body, but the dermatologist said nothing about his cough.

No one thought to order a chest x-ray until eight months later. Hello? HE HAD A COUGH.  Shouldn’t that have been the first thing to order, especially with his history of melanoma?

Needless to say,  my faith in the medical profession is greatly shaken.  I am beyond angry that my father lost his life because this wasn’t detected a year ago. I am frustrated that no forewarnings, no scans, no check-ups were advised after the initial lesion was removed from his face. I’m heartbroken that he wasn’t given any information about melanoma; no brochures, no literature, no anything. No talk about metastasizing lesions or survival rates by stage.

None of us saw this coming because we were told they “got it all.” Had my father been given some basic information about melanoma instead of just a pat on the back and shown the door, maybe, JUST MAYBE, he’d be sitting next to me right now helping me blog something different, like good treatment options, diet, sun protection, CBDs, etc. But no advice was given. He was just sent on his way.

Through the course of his short illness, there were roadblocks left and right in treatment and in the way insurance handled billing. He was even denied cough syrup! Ironically, once he was on hospice, the cough syrup was covered. Nothing made sense.

I have a lot of questions, lots of thoughts going through my mind but trying to remain objective is difficult because Dad is in Heaven now. Though I know that he is no longer in pain, and in a much better place, Mom and I are still missing him greatly. I can’t help but think that the gaping hole in our lives left by my father’s death could’ve been avoided if only ONE of his physicians had taken him seriously and looked at his chest last April.

My advice to anyone diagnosed with this heinous form of cancer is to make your doctors listen to you. Don’t let them sweep your symptoms under a rug or offer antiquated diagnoses like “the hundred day cough.” Make them do their job.

Run Over By The Cancer Truck

My dad was diagnosed with cancer a week before Thanksgiving. To say that we were hit by a truck would be putting it mildly. My father is only sixty-eight, far too young to receive such devastating news. I’ll be blogging more about this as his treatment progresses because there have been some snags—for lack of a better description—that involve Medicare, scheduling, and the general attitude among the medical field that I want to discuss in finer detail.

Today my question is this: Do you think that your doctor should have the final say in your treatment or should your insurance <insert company name here>?

My dad has metastatic melanoma in his lungs and liver. Melanoma is not treated with radiation or chemotherapy anymore. Today it’s treated with either immunotherapy, which helps the body fight it on its own, or if the melanoma has a mutated gene (BRAF) it can be treated with a new medicine that targets the specific mutated cancer. If my father is found to have this mutation, his oncologist believes that the treatment for it works faster than immunotherapy. The plan was for the oncologist to order more pathology on the biopsies taken from his liver to determine whether or not the mutation was there. Once the report was back from the pathologist, the oncologist would meet with my dad and a protocol for treatment was to begin. His appointment was planned for yesterday.

Keep in mind that through this whole process, a weekend or holiday would interfere with scheduling. So even though the oncologist would say we needed a test or scan done ASAP, we were still waiting a week in between these “ASAP” tests and appointments. Frustrating doesn’t begin to cover it.

After some confusion and delays, my parents finally met with the oncologist yesterday for the results. Here’s where the question above comes into play. The pathology report was sent directly to MEDICARE, not to my father’s oncologist, so the doctor has no idea whether or not my dad’s melanoma carries any kind of mutation. It will take Medicare (read GOVERNMENT) two weeks to process this information and get back to the doctor on whether or not THEY will APPROVE his treatment for the mutated melanoma, if he indeed has it. Let me say it again; the TREATING PHYSICIAN does not have access to the pathology report until after Medicare has read and processed it.

Am I the only one who thinks this is wrong? Granted, there’s only a fifty-fifty shot that my dad has this mutation. Thank goodness that his oncologist will begin immunotherapy treatments—once every three weeks—beginning next week (eh hum, this will be discussed in another blog), as a proactive measure for now. If the report finally comes back saying he has the mutation, he will finish out the immunotherapy and then begin the new treatment.

Again, am I crazy to think that that report should’ve been handed to the DOCTOR first and then submitted for insurance and not the other way around?

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