Medical phobia that might not have a name

wire-telegram-medical-phobia

I have had a debilitating relationship with doctors and, by extent, anything medical related ever since I was a child and it’s only progressively getting worse. I have never willingly gone to a doctor. I was forced through routine check-ups as a minor, but I can’t remember the last time I’ve gone to a doctor since becoming an adult.

The implication, no matter how small, of being sick is enough to regularly send me into a downward spiral of paranoid thoughts of having my control taken away and being hospitalized. The amount of panic that I often experience leads to disorganized thoughts of wanting to kill myself to avoid hospitalization. If this doesn’t go treated I fear that I will spend the rest of my life dodging doctors and ultimately cutting my life short. I have a partner I hope to marry one day and a nephew on the way.

I desperately want to get better, but how do I do that when I’m afraid of the people with the best chance of helping me?

What Was The Last Thing You Said to Someone Before They Died?

In high school I was friends with a girl who was very toxic, and when I began digging myself out of depression I cut her out of my life and didn’t speak to her for a year.

We had a very close relationship while we were friends, but for an entire year we never spoke a word to each other, not even a ‘hello’ when we passed each other in the hallways at school.

Then, one day, she texted me, inviting me to one of her parties she held every year. I didn’t want to go, considering I knew nobody who was going and we weren’t friends anymore, but I wanted to get away from my parents for a night, so I forced myself to go.

The party, unexpectedly, was very exciting and adventurous, and somehow I ended up being one of the last to leave the party.

She and I were in the pool together striking up a conversation for the first time in a year. While conversing I realized that she changed in a years time and was now a much happier person.

“It’s late, I better get going,” I had told her while stepping out of the pool.

“Awe really? Okay, well thanks for coming!” she smiled, throwing me a beer and I (surprisingly) caught it.

“Of course. Thanks for inviting me. Honestly, I didn’t think you would.”

“Jane, I know our friendship ended badly, but you’ll always be one of the best friends I’ve ever had.”

“Hey can I tell you something?” She had nodded and I continued, “I’m really proud of how far you’ve come, and if you ever need anything I’ll always be here for you.”

Two days later she was texting and driving on a bridge, hit a car at a fast speed, and her car fell off the bridge with her still inside of it. She didn’t survive the crash.

It was very painful attending her funeral, but I am very lucky my last words to her weren’t “I don’t want to be friends anymore,” and instead more kind, heartfelt, and honest.

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“It’s okay Camper, Momma and Dadda get sick too – you are being very brave, now get some sleep, I love you.”

My two-year and nine month-old son, who’s name was Camper, had the best day of his life on Saturday. Two birthday parties – one at the beach and one at his cousins’ house with great friends and family.

The following day, he woke up with a headache. He was very smart and well spoken and told us (my wife and I) that his head hurt in the morning. We assumed he was probably a little dehydrated and just not feeling the well from all the cake and party action on the previous day.

My wife had to see clients that day, so I spent the day with Camper. We watched the movie A Bug’s Life, but he was throwing up and napping throughout the day. I just thought he had a general sickness. My brother-in-law was a pediatrician at the time, so he advised us to make sure Camper stayed hydrated with some Pedialyte. We did that, then put him down for bed that night, which is when I said, “It’s okay Camper, Momma and Dadda get sick too – you are being very brave, now get some sleep. Sweet dreams. I love you.”

And to be honest, I don’t really know if I said “I love you” – I regularly tell my children that, but for the life of me, I cannot exactly remember. It feels better to think that I did, even though he knew that anyway. I told him a few times throughout the day that he was being brave, because he didn’t cry or complain at all.

He never woke up from that final sleep. We ended up taking him, unresponsive, to the trauma room that night. He had an undiagnosed brain tumor that I guess just slowly grew as he got older. Slow enough that his brain could adjust and we never once saw any symptoms. And finally, on that day, it ruptured an artery in his brain and that was the end of his very bright, very full, very short life.

EDIT: I just wanted to add a couple things. First, I’m a very private person and was torn sharing this story with the public. But, when I saw the question, I felt compelled to answer, so I’m sticking with it. All of your well wishes are very kind and helpful.

Also, I wanted to add that we were able to donate Camper’s very healthy heart to a little girl that now gets to live on. We know that Camper’s time on this earth was short, but very impactful on many lives.

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Empo, my mother’s aunt, has been living with our family for thirty years. She died of stroke early last year. She was 90 years old.

I almost didn’t say goodbye. It was eleven at night, and our flight to Japan was in six hours’ time. If I wanted to say that I was leaving, I had to knock on her door that very instance.

‘She would already be sleeping, wouldn’t she?’ I asked Mom.

‘No, she’s still awake,’ Mom said. ‘Go now.’

So I went down the stairs and knocked on her door. The stay-at-home nurse opened. Her room was already dark. Empo was laying on the bed, watching the TV. She noticed that someone had entered the room, and asked, ‘Who is it?’

‘It’s Ella,’ I said. I walked towards the side of her bed, leaning forward and placing my mouth right beside her ear.

‘Po, I will be going tomorrow for holiday,’ I said. ‘Be well, Empo. Eat a lot. Take care.’

Empo nodded and asked, ‘When going back Melbourne?’

‘January ninth,’ I said.

She nodded. ‘Well, then, enjoy the trip. Have fun.’ She put her hand on my shoulder and patted me. This was odd, as she was usually unhappy when we left her for the holiday. I kissed her left cheek and then her right, waving my hands and slowly closing the door to her room.

‘Be well,’ I whispered.

Empo had stroke when we were still in Japan. My parents caught a flight home right away, but my older sister and I weren’t able to get on an earlier flight. Empo never woke up from her coma. But my parents got there in time, Facetimed us and right after my sister and I said goodbye a second time, she passed away.

I almost didn’t say goodbye. But I’m sure glad that I did.

I’m A Cancer Survivor, This is My Story

This is the type of Hodgkin’s that I had when I was diagnosed the second time. Of the four types it is the most common with large tumor nodules. One of them is clearly visible slightly off center toward the bottom left.
In the spring of 1995 I was diagnosed with Hodgkin’s Lymphoma . Of the four types it was the mixed cellularity type. The cancer first appeared as a lump on the right side of my neck and soon progressed as a series of smaller lumps heading for my chest. The way these lumps developed and traveled and the fear with it, made me refer to the cancer as “the beast.” A CAT scan also revealed that I had a tumor in my lower right sinus cavity, which is not supposed to happen with Hodgkin’s. After having four cycles of chemotherapy and radiation to my right sinuses and mouth it seemed that I beat the disease or beast. At least I thought I did. Below is my story:

One year, two years, five years, or the ten year milestone, it didn’t matter, I just wanted to forget that I had cancer. I wanted to put it behind me. During one of my treatments during my second bout with cancer I made the mistake of asking the nurse too many times what each chemo drug was for and what physical effect it had. She seemed to be irritated, lecturing about all the drugs again as she hung the bags on the iv pole. It simply was a matter of conditioning. You learn a skill, such as painting, or playing the piano and you are rewarded, but when you are administered pain, it is the kind of conditioning that makes you forget. I just don’t know why I was so stupid to keep asking, because I really didn’t care too much about the details of the drugs as long as they worked.

After the last time I had cancer, the oncologist told me that if I would have a recurrence it would start where it left off. That was great to know. No matter what, the beast was going to get into my chest anyway. There was no way of winning. The only way was not to get cancer again. That was my only chance and my only choice.

Six or seven years later I stopped going to the doctor for any kind of checkup. I didn’t think it was necessary. I could check for lumps on my own, feeling for them at the base of my neck or under my armpits. So, thirteen years later, when a lump appeared on my right leg near my groin, I didn’t think anything of it. It was early July, after a four mile run when I first noticed it. I always like to do sprints so you have the tendency of hurting all over when you are done. Considering your legs are taking most of the punishment I assumed I simply pulled a muscle. I was concerned that I might have herniated it but eventually I forgot about it because it didn’t hurt. Every once in a while I would check my leg forgetting about it for weeks on end, but the lump was always there.

The “no pain” aspect should have been the alarm. Even though I felt fine, the first symptom reared its ugly head during the same month that the lump showed up. For about two weeks I lost my appetite and ten pounds with it. For me, this was not good since I am somewhat thin anyway, but I eventually regained my appetite and the weight.

Everything was back to normal until November and December when some truly bizarre symptoms showed up. The first real noticeable one was drooling. Yes, I was drooling. Even though the radiation more than a decade before dried up my saliva I still slobbered all over everything when I slept. I put stains on all my pillows. I put a stain on my winter coat when I fell asleep on the couch. I tried desperately to counter it by sleeping more on my back which I am uncomfortable with and I hate to do. At first, I was inclined to think this was a good thing. Maybe the saliva gland on the right side of my mouth was now back to normal, but this unfortunately wasn’t what was happening. The last time I had the disease, before the lumps showed up on the right side of my neck, I would sweat from my right armpit for no reason. I wouldn’t even have to exert myself. Standing, sitting, it didn’t matter. It was so random. It was like turning on a faucet and the odd thing was, it was exactly like a faucet. The sweat didn’t smell. It was only water! However, as sudden as the drooling started, it just as quickly stopped a couple of months later.

The next weird symptom, which occurred at the same time as the drooling, is my becoming a human candle. It first started in the morning when I was still in bed. I could actually feel heat coming off the top of my head. Soon it progressed into my waking life. I was on fire any place where it was cold, the heat just bobbing off the top of my head, whether I went out to get the mail, walked to my car at the supermarket, or if I stuck my head in the freezer. This symptom lasted longer and got worse as spring rolled around but it never morphed into night sweats.

These two symptoms however paled in comparison to what was to come next. By mid January of 2009 I ended up in the hospital. It started one Sunday when I ate too much. By the time I went to sleep I did not sleep. I couldn’t because the bed wouldn’t stop moving. My heart was racing and it would not stop. It pounded so strong and so fast that I couldn’t keep still. In the morning my sister took me to the hospital. In the emergency room I laid in bed with a heart rate of 120 beats per minute. Any attempt to bring it down did not work. I was then admitted for the night where again, I did not sleep. Yes, stay the night where we will take care of you and find out what is wrong. Don’t worry. Get a good nights sleep.

Well, that is what should have happened, but instead, I was harassed every hour or two by a revolving door of nurses. Let me check your EKG. Let me draw some blood. Let me take your blood pressure. Then is started all over again. I started to doze off initially but I eventually gave up. This was compounded with an iv in my arm that prevented me from moving much in bed, and then considering that the iv was a blood thinner, I had to get up constantly to urinate. Obviously that night was not very good. My heart rate should have been 220.

By morning I was taken for a stress test. I was convinced that they were going to find something wrong. They had to since I had a family history of heart disease, but to my surprise they found nothing. I was fine. The explanation for my racing heart rate was a combination of acid reflux and stress. A few hours later I was home and my heart rate was somewhat back to normal.

The second serious symptom started innocent enough with my simply going to the bathroom more times at night than usual. At first I thought it was only a bladder infection. Some of the times I had some low level pain but it always seemed to go away when I drank cranberry juice or when I drank a lot of water. Then, one day, while working out in my basement on the treadmill, I thought I pulled a muscle. It didn’t really hurt. I only felt some discomfort at the crease between my right leg and my groin area. I tried to continue exercising but it only got worse. One day, after using a rowing machine, I was horrified when I urinated pure blood. Now, did I go to see a doctor. No. Despite how shocking it was I believed that I only injured myself and that I would heal on my own if I was careful, and this is what seemed to be happening. The blood diminished over a period of two days and then it disappeared. I guess I didn’t want to see any evil.

However, once I started any physical activity the blood would return. I still wanted to cover my eyes, not wanting to see the inevitable. The main reason is that I always seemed to rebound quicker. Eventually I didn’t notice any blood for a couple of weeks. This really shows how stupid I was. One day I felt the area between my groin and my leg and noticed a number of small lumps. It reminded me of the small string of lumps on my neck more than a decade earlier, but this time I felt quite a few more. What did I do? I did nothing. When I noticed a slight swelling on the right side of my groin, what did I do? I did nothing. It wasn’t until the blood returned and a parade of family members calling one after the other that I finally relented.

The whole blood incident began in late March. Four weeks later I saw the doctor. The first thought was that maybe I had a kidney stone. I was reluctant, but I showed him the lump on my leg. He was concerned. This was the first time that it hurt since he pressed on it pretty hard. After I told him how I noticed it after running, he even thought that it could be a herniated muscle.