If there’s one thing that I’ve learned over the past few decades, it’s that you have to keep a monitor on your health. Research everything. Don’t just take a medical professional at their word. They can be wrong just like the rest of us. If I didn’t know this before, watching my father be diagnosed incorrectly and living with one disease while he was diagnosed with another opened my eyes in ways I don’t wish anyone to have to endure.
Several years before my father was diagnosed with a Stage IV glioma that would eventually claim his body, my parents went to a research hospital in the nearby area. Dad went to see a neurologist because something was off. He had gotten slower with reflexes, and he had been losing his voice. He had some shaking in his hands and my mom, who is a nurse by trade, arranged to get him seen for tests. They went to see the head of the neurology department. I won’t name the hospital name for legal reasons but the head of the neurology department never bothered to do an MRI or CT Scan. Instead, he had my father walk down the hall and said “Yep, it’s Parkinson’s”. For two years, he was treated with medicine that would help him or so we thought. About three years after he’d been, I had been going to the park a lot to get my exercise in. I was living with my folks at the time because I was trying to get back on my feet after a very painful divorce. When I got to the house, my father was collapsed on the floor. My heart sank. He’d been there for several hours. He could barely talk. I helped Dad get up, and helped clean him up. He was beyond embarrassed. He confided that he was scared to death to take a step forward. He leaned on me to get from point A to point B. That was just the start of him collapsing. My father had never been an alcoholic. He’d only have one drink each night. However, the alcohol mixed with his meds made him lethargic. He cut out the alcohol after he had multiple episodes thinking that was what was causing him to fall so often.
Within the course of three months, my father started falling almost daily. My mom’s job had her traveling all over the US so she wasn’t seeing the same things I saw. I finally called mom sobbing and told her that Dad wasn’t dealing with Parkinson’s. I didn’t know what he had but this was not normal behavior for someone suffering from that disease. She agreed. Dad had gone with me to our family farm. While I was out mowing the grass, Dad stayed inside, sitting in his favorite chair, watching TV. I came in hot, sweaty, tired, and ready to fix some lunch. Dad agreed. The next thing I heard was a thud. Dad fell out of the chair. He was responsive. I called 911. The paramedics came and they took him to a local hospital. I don’t know what it is about healthcare in this area but it was the pits. It took forever for him to be seen. He then had a nurse who really didn’t want to be there trying to get Dad to go to the bathroom down the hall. Dad couldn’t walk. When I explained to her that he needed help to go to the bathroom, she retorted, “Well are you going to whip it out or what?” My jaw hit the floor. We have a healthcare system here that claims it’s among the best in the country but if that’s the best, I’d hate to see the kind of care that is given to those who can’t afford any care at all. Everywhere else in the country, a urinalysis is done to rule out several different issues. They didn’t do one. They did do an MRI and didn’t call us on the results. My mom had enough of the runaround. Having worked in healthcare, she went to our family doctor who is six hours away. She got an appointment for Dad, the Doctor got the MRI results sent immediately to him.
What he found on that MRI infuriated the doctor. Dad had a brain tumor. It showed up on the MRI and no one had told us anything. We took Dad to the nearest hospital there. This was in Hilton Head, SC. They ran a barrage of tests and told us that he needed to be evaluated when we got home. So what do you think we did? We set up the appointments, took Dad to the hospital, and once again, he was diagnosed incorrectly. One of the oncologists said it was a stage 2 tumor. Dad started crying. He couldn’t speak. His voice had been stripped from cancer. I’ll never know what he was really thinking. They hospitalized him and ran even more tests. This time, they determined that it was a stage 4 tumor. They kept Dad in the hospital for a week, running more tests, having him in and out of ICU. By this time, mom and I were in shock and numb. I can only imagine how my dad felt. Mom went into her consultant mode. She was a professional nurse consultant who helped facilities get to JCAHO standards. For those who aren’t familiar with JCAHO, this stands for Joint Commission on Accreditation and Certifications. It’s the Crème de la crème of evaluations within healthcare. She had contacts all over the United States. She took Dad to Atlantic Care in New Jersey. It was there that Dad underwent the cyberknife treatment. This was an alternative to chemo. We knew the chemo wouldn’t really help Dad’s cancer. There were unfavorable odds for Dad to beat the disease that was running rampant throughout his body. He was really hot after the Cyberknife. Mom went on a consult while I took Dad back to the hotel after his treatment. He wasn’t able to walk but I had made provisions along with Mom to help Dad get comfortable as best as was possible. Dad’s favorite treat from McDonald’s was Ice Cream Sundaes. I got him some while we were there. The ice cream helped him to feel cooler. We had tried to keep him off sugar for virtually his entire treatment but he deserved a treat after all the emotional and physical upheaval that he was undergoing.
Eventually, Dad was hospitalized again. Only this time the hospital added enough fluid to him to make him swell up like a balloon. It took us a month to undo the damage the hospital had done. In fact, not too long after this happened, Dad had to return to the hospital. The doctor who was treating him wanted to know why I wasn’t wanting to leave him at the hospital. When he said that Dad was going to die, I retorted, “He’s going to die anyway, there’s no sense in you blowing him up for him to be miserable.” He responded with “Touche”. I’ve never been someone who likes confrontation. But when someone I love is being mistreated or mishandled, I have an explosive temper. I’m not physically violent unless my life or those I love are in physical danger, but I have no problem with using my education to get my point across. One of the nurses had bound dad’s hands because he kept pulling out his foley. It didn’t occur to her to read the chart. Had she read it, she would have found that the only way my father could communicate at that point was to squeeze hands. Once for yes. Twice for no. I wasn’t allowed in the room with my father because he had tested positive for MRSA. I’ve had MRSA before. It isn’t fun. Ironically, I got it in a hospital while visiting a friend. My friends say I’m a mini version of my mom when I get mad. In part, because I grew up in a medical world but didn’t pursue it as a career. I know enough to be considered dangerous with knowledge but not enough to go into a certification or degree. Nor would I want to. To the men and women who help save lives every day, please know that I commend you. It isn’t an easy job that you have. For every bad medical worker out there, there are many who excel at their jobs and don’t get the credit they should. We just ran into some of the worst during these experiences.
The hospital finally got me to go home after 3 days of no sleep. My friend Darla took me home and let me get some food and crash for a couple of hours. She took me back to the hospital later that day. When I got there I was livid. Dad’s blood pressure was in the 180 range. It made things worse when the nurse said it’s been like that all day and no one called me. I could have helped keep Dad calm. Dad’s hands were bound, food was in front of him with no way to eat, Darla saw smoke come out of my eyes. I marched over to the nurse’s station and asked to speak with the charge nurse. The nurse that was in Dad’s room, came in to shut a machine off and never acknowledged me. Little did I know that my mom was on the phone with her at that time. What I did know was that she was not a kind woman. She tried to get me to leave because Dad had MRSA. I put on the required items. I stayed there from that point on. I was so mad that three hours later when the charge nurse finally came in, I started listing off the things that we had encountered. In case you all think that I was just some uneducated person in with my father, let me assure you. I’ve learned more about brain tumors than I ever wanted to learn. Darla, who is a professional caregiver by trade, helped my father eat while I went to bat for him. The very next day, one of the lead physicians was doing his rounds with many residents watching. He took me to task for getting the cyberknife procedure done.
By this point, my give a damn was busted. When I challenged him back about keeping him on a keto diet because sugar feeds the tumor, he said that they didn’t know that’s what we were doing and I asked him if he had bothered to read the information that was presented in the chart. Had he read it, not only would he have discovered that tidbit of information but he would have discovered that we did the cyberknife option because it was the best of the choices we had available. He even went so far as to remind me that it was expensive to do that procedure. You should have seen the look on his face when I asked him if he was placing a value on human life. It was like I slapped him. The residents were all looking around by the time our conversation ended and one of them even came up to shake my hand. I don’t remember ever being so angry at the ignorance that was displayed. To make matters worse, that same physician had the gonads to ask if I was single because he thought I was spunky and feisty. Dude. Get real.
We had one last shot of getting Dad’s help. Mom found a company called Camelot Cancer Center. They were located in Tulsa, Oklahoma. They were not legit but we didn’t know that at the time. Mom paid the money she didn’t have to them and Dad was dead within a week. His cancer had become aggressive and we had tried everything to no avail. If any of you go for treatments, stay away from Maureen Long and anything associated with Camelot Cancer Care. There have been numerous issues with them and the FBI has investigated them. All this happened after Dad had already been and died.
The reason that I’m talking about this is simple. When you know something isn’t right with your body, and you go get it checked out, you must make sure you stay on top of monitoring your own health. Dad tried and he trusted the system. We all did. But when Dad died, the ambulance took him to a hospital I didn’t want him to go to. Had a neighbor not called to let me know where he was actually being taken, I would have shown up at the wrong place. Dad had been revived by the fire department against mom’s wishes. She had the healthcare power of attorney but did not have a DNR form in the house. Word to the wise, if you don’t want to be revived, get one. I was forced to lose my dad twice in a twenty-four hour period. The admitting doctor pulled me into a waiting room for those who are losing family. He told me of his plans to cut him open. I looked him dead in the face and explained the ordeal that dad, myself, and mom had all been through. I reminded him that they were making me lose my father twice in twenty-four hours and that he wanted to cut him open when dad had a brain tumor. What good was that going to do at that point? I told him my father had died in my arms and to let him go. This wasn’t what he wanted nor did mom and I want him to suffer any more than he had. The room was full of loved ones and a chaplain. I’m not proud of what I said next but I looked at the doctor and told him, “I don’t care if you think you know what’s wrong with a patient. Never assume. Run the damn tests. I don’t care if you think you know everything, still run the damn tests. The minute that you think you know it all, get the hell out of medicine. Because when you get that cocky, you make mistakes. Those mistakes are costly. If you don’t like what I’m saying, tough shit. You can suck my dick.” Everyone fell out in laughter when I said that except me. I was stone-faced serious. For the record, I don’t have a dick but I was so raw at that moment that it felt like I had gonads. After I said that, he looked at me and said he didn’t have the heart to cut him open. After an honest exchange, I told him that as long as he listened to his heart and gut, he would make a great doctor. Just don’t let the rest of the world turn him into a godlike complex. There is no doubt in my mind he’ll ever forget me. For the record, I did apologize to the chaplain and he told me that it was refreshing for someone to speak as honestly as I did. Just as we were about to leave the waiting room, a young admissions rep came bursting in and said she needed to get information on Dad. Please keep in mind I had already been there for hours. They had plenty of time to get the information and she didn’t need to be so rude. Thankfully, the Chaplain took care of it. Right after we left, I called her supervisor and raised a complaint.
While we don’t have guarantees in life, there is such a thing as quality of life. Keep monitoring your health and don’t settle for one diagnosis if you aren’t getting relief. Research everything and ask a lot of questions. Find what helps you have a more productive life and remember, you know your body better than anyone. You know when something’s off. Trust yourself. Communicate with those who can help you. It could make a lot of difference in the long run.