Sometimes you’re paranoid for a reason

Just over a year ago I posted this. A description of my fears into the void in hopes of easing my own mind. My husbands blood work came back with some abnormalities. He was doing monthly blood work at the time to keep an eye on his response to a new diabetic medication, so to have abnormalities show up suddenly within a month was concerning to say the least. His GP referred him to a hematologist, whom we quickly discovered was actually an Oncologist. Fears grew. He was also scheduled for some additional tests and scans. I continued to “accidentally” find my way to WebMD through google searches, and continued to find he had symptoms of a few serious illnesses including colon cancer. I kept reminding myself that if we diagnosed purely through WebMD we’d all be diagnosed with cancer. So I pushed back my fear.

Day of the appointment came, tests results from the few they did were available, and the Hematologist/Oncologist showed no concern. “It’s just Anemia, the other abnormalities are from the lack of iron. Sometimes this pops up suddenly, don’t be worried we just need to get you on iron supplements.” He went on iron and followed up exactly on schedule. No change. “Your body just doesn’t absorb it well. We’ll put you on a higher dosage.” The next follow up appointment showed the iron in his blood went down. “Don’t worry, we’ll get you in for an iron infusion. It’ll take care of it and you’ll feel much better.”

So hubby walks into the office the day of the infusion and they explain that it’ll cost $5000. He asks what kind of payment plans we can do and they say none. The amount must be paid in full before any treatment is done. He continues to try to work with them as we don’t have the money and the doctor had said he needed this. “Sorry, but we don’t do these infusions until paid in full. We’ll go ahead and cancel the appointment and reschedule for when you are ready.” The doctors office continued to call for a while to explain he needed to go in for the infusion. Once he did they would schedule his follow up with the Hematologist. He stopped responding to the calls after a while as they still wouldn’t do a payment plan. He continued to work with his GP, continued to do blood work, always was honest when describing health and symptoms. The GP never seemed any more concerned than the Hematologist/Oncologist, so we trusted them.

April of this year his GP bumped up his iron supplements again as he still wasn’t absorbing it and a week later the occasional stomach pains he’d had for so long grew more severe. After a year of unspoken fear and trusting the doctors instead of my instincts I finally got him to agree to go to the ER. He had been unable to move for 3 days because of the pain of what he assumed was iron poisoning from the increase. The admitting nurse said “well, that could be it, but they’ll run some tests I’m sure to determine the cause.” She looked concerned. The ER doctor listened to his symptoms and asked questions finally asking “And your doctor hasn’t looked into this further?” She got him in for a CT scan. The scans showed dark spots on his colon. She said he would be admitted for further testing, but until they get the results from a biopsy there is still room to think positive. She too looked concerned.

Within 5 minutes of getting to his hospital room he had a gastroenterologist, hospital GP, and his previously seen hematologist/Oncologist standing in the room. They all looked concerned. As the first two spoke on what tests they would do and then left to go schedule them the Oncologist stayed and said “this is why you were supposed to do the iron infusion. So you wouldn’t end up in the hospital.”

Five days, two biopsies, three iron infusions, two blood infusions, and one major surgery later we had answers. Colon cancer, stage 4. A year ago I feared his symptoms were colon cancer or similar, but I choose to trust the doctors instead of speaking my fears. He now has no chance of remission from one of the most treatable cancers because it took too long to diagnose. It is so easy to beat myself up for not pushing for more tests, but that takes energy away from a family that needs me. It is even easier to be furious with the doctor, but he doesn’t care so why bother. Instead I focus on treatment, on hope that doesn’t exist, on taking care of my two young children while my husband lies in bed suffering the symptoms of cancer, surgery, and chemo.

But I learned from my paranoia mistake. The Oncologist wasn’t answering our questions, and was ignoring other symptoms. I didn’t ignore my instincts this time, I changed doctors. The new oncologist had the same reaction as the ER doctor. “He didn’t look into these new symptoms? He didn’t run more tests after your diagnosis? He started chemo that soon?” Turns out the original Oncologist did not preform standard scans to find a baseline which would show the effectiveness of chemo, he started chemo two weeks sooner than he should have after surgery, and he ignored pain that showed possible signs of spread to the bones and spots showing possible signs of spread to the lungs. He also omitted information on a more cost effective way to do chemo that has the same results.

Hubby got all the scans done with the new Oncologist and he has tumors covering his liver and lungs, but fortunately none in his bones. He now has a baseline and while they can’t switch chemo types yet they will with his next round to save him both time and money. He now has a pain specialist, a new GP, and a psychologist who all partner with his new oncologist. He now has the treatment he needs. Too late because of my ignoring my instincts, but hopefully soon enough to elongate his life.

WebMD won’t always be right. It’s usually not cancer. But it is better to ask and push for tests. Be sure to rule it out before assuming the doctor is always right. Trust your instincts even if they turn out wrong. I learned a hard lesson and my husband will now pay the price for that. Beating myself up steals energy from my family but secretly I may never forgive myself. Don’t make the same mistake I did.

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