About eight years ago I began having problems with pain and discomfort in my digestive system. More like twenty-five if you count more subtle symptoms. It involved pain where there should not be pain, and time badly spent in the bathroom that I don't care to go into detail about.
It became very distressing six or seven years ago. The doctors had little luck over several months finding the cause. My "bilirubins" (what causes jaundice) were always high. They had diagnosed me as having Gilbert's Syndrome (chronic jaundice unrelated to anything). Still, they kept coming back to my gall bladder, though I had no stones or other detectable abnormality. Finally, the gall bladder marginally failed one test, so they took it out. It appeared normal except for inflamation. I didn't handle surgery particularly well, so when they asked if I felt better, I wasn't sure if it was surgical pain or my orginal symptoms. I suspected it was still my original problem, but the pain gradually faded over the next few months. Who am I to argue with success? Besides, last time I complained loud enough they took a knife to me.
While they were poking and scanning, they found a lump in my liver. The analysis said it was a Hemangioma. This is essentially a birthmark on the liver, a tangle of blood vessels that causes no grief and does not change over time.
I had dropped a lot of weight, to 170 pounds or something. I started putting it back on. Off and on in the years that followed, I felt the pain coming back, but I was ready. I would stop eating for a couple days, then resume carefully. It always worked.
In late 2001, I weighed 193 pounds. I was self employed and paying through the nose for mediocre insurance. I started having problems again. They seemed to go away over Christmas, but came back with vengeance over the 2002 new year.
I had the pain and the many trips to the bathroom. I began losing weight (something I had been trying to do anyway). I also had frequent jaundice, and two other peculiar symptoms. One is that my face would easily flush very red, especially after beginning a meal. The other has to do with white bed clothing near me turning yellow, but since Patti and I disagree on the details, I won't elaborate.
In March, I received notice from my insurance company that they were pulling out of the state, and my health insurance would terminate in September. Great. There was no way I was going to the doctor to add a pre-existing condition for the next insurance company to deny me for.
So I plugged along as best I could, recording my meals, weight, and symptoms, looking for a pattern. Nothing was really consistent. It seemed anything could cause me grief sometimes. In August, at 175 pounds, I went on a backpacking trip in Yosemite for a week with my brothers Terry and Brian. Around 10 miles a day up and down mountains with 50 pound packs. After the second day on the trail, I felt great. All symptoms gone. Well, except for a sprained ankle and blisters.
Off the trail, in the restaurants, still felt great. Got home, had a bowl of cereal the next morning, BAM. Here we go again. But, these were clues and I was on the hunt. Me, my health log, some doctor relatives, and the Internet.
Meanwhile, the hunt for new insurance. We applied to a company. After a few bumps, the wife and kids got approved. Me they kept delaying on. I was running out of coverage. Finally, they told me I was denied. Why? They said they couldn't tell me, because it was confidential medical information belonging to the doctor. About me? I'd have to get it from my doctor. Who of course had no idea why I was denied. After 11 days of hounding them, they finally sent a fax to the doctor with reason for my denial. The reasons? Hemangioma of the liver, Gilbert's Syndrome, and a couple minor things thrown in. All medically benign things. All things that were on my record when the prior insurance company insured me.
The agent told me once one company had denied me, no others would invest the research to possibly cover me. I was screwed. The only option was a group plan at an employer, or Blue Cross/Blue Shield, which was impossibly expensive. I had been independent for a couple years now, and though I wasn't doing very well financially, I was not willing to be blackmailed back into the system. So after 42 years of continuous medical insurance, I gritted my teeth and joined the millions of uninsured. The way insurance works, the odds were very good that I would spend less on medical bills than I save on premium. Very good, but not certain. Oops.
At first I was infuriated that they denied me for medically benign conditions. The doctors shake their heads in amazement. But in retrospect, I understood. Their statistical analysis is not about whether I am likely to get sick. It is about whether I am likely to cost them money. If the doctors found an obscure and benign thing like an Hemangioma, it means they were looking for something else and didn't find it. The doctors might go looking for it again under their policy, or it might rear its ugly head again. That would cost them money. Maybe a lot.
Meanwhile, I continued the medical hunt. I grew more and more suspiscious that I had something called Celiac or Non-Tropical Sprue disease. This is essentially an allergy to gluten from wheat, rye, barley and a few other grains that damages your small intestine. Many things fail to digest well. The allergic reaction is often not visible - no rash, itching, or breathing problems. Going off wheat for a day or two (even if you know enough to avoid "hidden" wheat in processed foods) will not help much, because the damage is already done. It takes much longer to begin healing.
I dropped a few hints to my doctor father, and he independently suggested that I might look into a wheat allergy. Thus armed, I cut back on obvious wheat for a week or two while I looked up a formal diet. I began to feel better. I broke the news to Patti that I was going to try this. She is generally skeptical of my ideas, but had seen my pain and decided to humor me. In some ways it is an easy diet. Eat meat, vegetables, rice, or corn and you are OK. But most processed foods have the forbidden gluten hidden in them. Bouillion cubes, most soups (thickener), soy sauce, some french fries, canned hash, beer, and the list goes on. The kids wouldn't eat anything I could. Not that they drink beer.
Eureka! After a week or two on the formal diet I began to feel MUCH better. There were still some pains here and there, but the bathroom unpleasantness disappeared. I figured the remaining pains would disappear after the intestine finished healing. My weight by then had dropped to 165 pounds, but it was stable.
Then came the tax man. We were not required to pay estimated tax in 2002. We made more in 2002 than in 2001. A good thing. But Uncle Sam wanted a third of our extra income back in taxes. Plus estimated for 2003. We were not ready. It slashed into our savings. Patti was furious.
I had been wheat free for over a month, but now my stomach hurt. Our first vacation in two years was coming up over spring break. We had a condo in the Poconos reserved. On Wednesday I started getting black stools. I knew enough to recognize digested blood. Great. Now I have a stomach ulcer and it's starting to bleed.
The vacation was paid for and I was not about to cancel it. Besides, we would first stop at my sister Becca's house in Ohio for the weekend. I would make a turn for the better or worse about then and could delay my decision until Sunday.
After all the cleverness I can credit myself with, I was nearly killed by a little ignorance. I knew aspirin encouraged bleeding. I knew Tylenol did not, but that it was hard on the liver. So I brought some Ibuprofen along. I did not realize it also encouraged bleeding. I felt awful on the Friday drive to Becca's, and let Patti do most of the driving. Just before we got there, I took a couple of Ibuprofen.
We went straight to bed. I got up at 1:30 am to use the bathroom. Still felt lousy. After a mental debate, I took a third ibuprofen. I'm a pretty big guy. If a twelve year old can handle two, I can handle three in 4 hours.
I found myself on all fours with a little bump on my head. "Are you OK Rick?". "Mmmm". "Did you pass out?". "No." "What are you doing?". "Crawling. I think I will be more comfortable on the floor for a while."
It is a credit to her living with an eccentric that she did not immediately panic. But after some more conversation, I had to agree that it might be good to find out where the nearest hospital was. She went to rouse my sister. When they returned, I was doubled over on the bed in extraordinary pain. I got some shoes on on, shook the pain off as best I could, and was escorted down the stairs. My daughter asked me something. Not hearing her correctly, and not knowing what she knew, I responded "Just going for a little walk". She knew I was going to the hospital and had asked if I was OK. Her conclusion was that I had lost my mind.
The cool damp night air felt good. I walked up and down the drive. I got into Becca's car. It was a bit of a drive to the emergency room. After a while, the pain went away. Not wanting an emergency room bill that could be avoided, I talked Patti and her into turning around. I would go to a doctor's office in the morning. Her front door was locked, so Patti and I waited for her to go through the garage to unlock it. I came to with my head in Patti's lap.
Apparently I had sunk slowly to the concrete. Patti asked what I was doing, and I responded "sitting down". She sensed trouble and got behind me to catch as my eyes rolled back in my head. I immediately lost all say in health matters and was bundled into the car again heading for emergency.
We got there, and I grumpily got into a wheel chair Patti brought around. I answered questions at emergency reception. I found the list is some what shorter when one of your answers is "no insurance". As I went from clerk to nurse, faces got grimmer. I got onto a gurney. "GI bleed" said the nurse, and moved my gurney to the head of the line.
I was soon in Emergency itself. Some nice concerned young nurses fussed over me, taking history, blood samples, etc. I passed out giving a urine sample. Wouldn't have thought that would be so much work. A cheerfully grumpy doctor came by with my hemoglobin results. Seven. Nine is considered pretty anemic. I basically had no business walking. He thought I most probably would need to check into the hospital. It had crossed my mind. "Um, may I have a bedpan please?"
I filled the bedpan three times. First with black. Then with maroon. Then with red.
Patti and Becca were in and out, chatting with me and the nurses. They seemed calm enough when I saw them. I gather they were frantic when they were out of my sight. It occurred to folks that I probably needed blood and a gastroenterologist, so up to the ICU they wheeled me. Still conscious against all odds. Patti and Becca weren't actually allowed in the ICU I gather, but there was a nice waiting room.
I got some blood. A petite and sympathetic nurse struggled to get a lavage tube up my nose. Something tore painfully in my left nostril. She had a little more luck with the right, but despite my best efforts to cooperate, I gagged and coughed it up twice more before she got it down me. I felt it all the way. Blood was coming out of my stomach up the tube. A lot. They could not understand why I had not thrown up. They kept pumping saline down me until liquid started coming up clear.
Then the Gastroenterologist came. He was not pleased that I had waited this long to come in. He said he was going in with an endoscope to see where my stomach was bleeding. He would try to repair it using the scope, but if he could not, he would have to cut me open to save my life. He did not seem to be in the mood to discuss insurance and costs.
They pulled the nose tube out (they didn't want to, but acknowledged it was making me miserable) and I slipped away under the sedative for the endoscopy. While I was still sleeping and getting blood, the doctor talked to Patti and Becca. "He is in deep trouble", he said. Patti slipped into silent shock as he explained that I was not bleeding from my stomach or intestine, but from Esophageal Varices. They had stopped bleeding on their own. Untreated, they have a 50% mortality in a year. He could treat me for them here, but they are almost always caused by a dying liver. I might need a transplant. So what major hospital to transfer me to? He recommended Cleveland Clinic, Patti said OK. A nurse hugged her. This kind act did nothing for her sense of calm.
I was into my fourth pint of blood when the men in black came to take me away. I really could have just gotten myself onto the ambulance gurney. But a large collection of paramedics and nurses slid me and my sheet over. The ride to Cleveland Clinic was uneventful. Two paramedics were trainees. They were all handsome paramedic types in dark leather jackets and shortish hair. The head guy was nearly my age, but looked 15 years younger. He listened with believable interest to my health and insurance woes.
Patti and Becca caught up with me at Cleveland Clinic ICU. They looked tired. They hadn't been getting blood. Or food. Or relief from fear and uncertainty.
In the Clinic ICU, A pair of eyeballs watches you at all times. Some poor soul was at a desk where he could see me and the next curtain at the same time. I sat cross legged on the gurney and stared at him. He looked uncomfortable.
The clinic is a teaching hospital, and you are treated by a team, ala ER. Everyone on the team takes your medical history and reads your vitals. Except the actual doctor. So, we repeated the same very long story over and over again. Becca asked, "Don't you guys ever talk to each other?" Looking around ICU, I was the only conscious person visible. This placed looked expensive. "Do I have to stay here?". The head resident allowed that perhaps I did not. But they wanted to see my blood work results first. The last fellow, Basheer, took an exceptionally long time, and shoo'd Becca and Patti out of the curtains. Partly to ask some private questions, but mostly I think because he didn't like to be watched.
The ladies didn't much care for Basheer after that. Even before, the third time he asked "What brought you to the hospital?", he did not seem to find Becca's reply of "an ambulance" amusing. This bothered her. However, I liked him well enough, and quite a lot over time, because he was the only person to stay with me. The teams rotated this week, and I would get a whole new set of doctors on Monday. Except Basheer, because he was really only a student. He stayed.
Sturgis hospital can turn around a blood profile on Sunday in half an hour. Cleveland charges you for ICU after four hours. I did not get out of ICU until six hours after I arrived, waiting for a new bed assignment (the resident didn't like the nurses on the first floor I was assigned to) and waiting for the blood work. It was marginal, but they didn't like me staring at them up there, and my standing blood pressure was acceptable, so they sent me to the regular hospital floor. They did not charge me for ICU. Patti and Becca had headed home a few hours earlier, confused and exhausted.
Sunday I woke surrounded by the "team", complete with the Doctor they were all obviously in awe of. He did vitals, poked and prodded my belly with his large hands. Not surprisingly, it hurt when he pushed his fingers under my ribs. I had an ultrasound and chest Xray that day.
The kids visited me today. And Patti of course. And Becca and Jeff and my niece Emma. I was upbeat. After initial relief that I didn't look awful, the kids quickly got bored. I called my folks so they would hear my voice and not worry so much. It was a nice visit.
After they left, the chief resident on the team talked to me. She looked rather a lot like "Caroline in the City". She pulled a short stool up by my elbow to talk to me. I have learned this is not a good sign. The ultrasound showed I had a large mass on my liver. It was puzzling, because I was too young for liver cancer, and the protein marker for liver cancer was not present. How large? "10 by 11 centimeters". Centimeters? Not millimeters? That's the size of a duck egg. I don't remember my hemangioma being that big. She also said there were two smaller lumps.
Monday, I got a new team as promised. The head resident of this team took a look at my blood numbers and said, "Whoa! This guy needs to be in ICU." So they sent the ICU doctor down to admit me. He looked around for the guy he was supposed to admit, and realized that would be me. "How do you feel?", he asked rather puzzled. "Much better than my numbers imply," I replied. I was sitting cross-legged on the bed. He took my blood pressure, then had me stand and asked if I was dizzy. No. Would you like me to stand on one leg? He took my blood pressure again, and called in the team that happened to be in the hall. They came in, checked my pulse, took my blood pressure again, and waited for me to fall down. I didn't.
I fell into a bit of a nap, and awoke surrounded by doctors. The team, and the real doctor, an internist. They had been debating my future in ICU. After another round of vitals and some prodding. They said they would leave me here and give me another two units of blood. I said I wondered when they would get around to that. "We don't like to give blood if we don't have to". I've had four. I'll take two more if it keeps me from paying for ICU. I know the dangers come fresh with each new bag, so their concern was reasonable, but not balanced with any economic reality.
Patti escorted me down to Endoscopy for my "banding". They put rubber bands around the base of the bulging varices to tourniquette them off. I was not quite under, and heard them say they put three in. There was no blood in my stomach, despite my stomach ache. I also had a CAT scan.
Tuesday I called Patti early to come to the hospital. It occurred to me I might go into surgery at a moment's notice. I needed some legal stuff arranged for so Patti could receive and write checks for the business. I signed the taxes. We got power of attorney and bank signature cards faxed to us. This scared Patti. She didn't like it. She thought I was being a pessimist. I also wanted my folks to come down soon. There would not be time if I suddenly went into surgery. She hated all of this, but I insisted.
They did an ultrasound guided biopsy of the liver. Just a little pressure they said. Just a little poke. Hah. Sedative, and local anaesthetic be darned. That needle felt huge. And I could feel the tumor trying to run away from it.
They also poked a needle in my belly to draw off some fluid that didn't belong there. It was not infected. It was a pale pink.
The doctors said they took my self diagnosis of wheat gluten allergy seriously. It was on my wristband, and at the nurses station, but they never specified it in my dietary restrictions. I had not eaten for five days. They put me on a liquid diet. They brought me beef broth. I explained to the nurse I had to see the ingredients. My allergy seemed novel to her. Sure enough, I couldn't eat the beef broth. I had the rest. Next morning, chicken broth. That was Ok. At lunch I graduated to "full" liquid meal. The hepatologist suggested I go off the gluten free diet so that they could test me formally during my second scheduled endoscopy. It sounded reasonable, and I had to eat something since the kitchen evidently didn't know from gluten.
So, cream of mushroom soup. I love cream of mushroom soup. It was delicious. I finished my meal, and was chatting with Patti, Becca, and Nurse Nora. Someone pointed out the slip that came on the meal tray. It had "full soft" circled. Elsewhere on the slip was "Gluten Free". It was not circled. So the kitchen DID know about gluten free if they were told. Becca said, "what are those red spots on your neck?" After a month without wheat, I was having a full blown allergic reaction. Spots, my face turned red, my temples throbbed, my gut cramped as I headed for the bathroom.
I finished my unpleasant business, and came out of the bathroom with my face still red and my temples pulsing. The head resident on my team, who suddenly looked very small, was talking to the women. I raised my right fist to show the allergy band on my wrist and said "Gluten Free". He scurried around me out of the room, looking a bit fearful. He returned a short time later with the nurse to check my vitals and shortness of breath, and told her to give me benadryl by IV. The IV line on that arm did not take it, so I got oral. They put "Gluten Free" on my dietary restrictions. This meant baked fish for lunch and dinner, omelet for breakfast.
I had been a very nice patient. Now I was surly. Patti didn't like it.
I paced the halls. I did pushups where staff could see me. I wanted out. They wanted me out. They did not expect the pathology report from the biopsy for some days yet, due to special staining they wanted to do. They scheduled me to leave Friday afternoon.
Friday morning, the Internal Medicine Doctor came to see me. She was, as Patti can attest, a striking tall pretty woman. She pulled a very low stool up by my elbow and sat down. Where have I seen this before? She said the path reports came back on my tumor. It says "Neuro-Endocrine or carcinoid". Apparently, this is a very rare, slow growing tumor. The doctor teams had discussed this, but dismissed it. They had only read about them in text books, and didn't expect to see one. They all rather looked like bird watchers that had been told a phoenix had been sighted in the area. She said she didn't know much about them.
So, I was out of the hospital, rather wobbly and the worse for wear. I had slow growing cancer in the liver, but it was not liver cancer which I knew to be nasty stuff. Something was wrong with the vein to my liver, but perhaps if the big tumor was removed, it would open back up. Patti and my parents and I headed back to Becca's house. I spent some time in the sunshine, then went to see what the kids were up to at some huge arcade hall Becca had taken them to.
I talked to my doctor brothers about the pathology report. They both seemed awfully sad. But then, it wasn't the best news in the world.
We talked to the kids that night. Patti was crying. I told them what we knew and what we hoped. Their Mom was having a rough time, so everybody help her when they could.
Patti and I went back to the Clinic Saturday with 24 hours worth of urine and a hand written order for a blood test. They took the urine, but the test request was not in the computer. "That's why it's hand written. He couldn't get it into the computer." Patti was off trying to get the preventive anti-biotic prescription we were given filled. None of the pharmacies had it. Actually, not even the clinic had the generic, only the name brand they could scrape up. I spoke to the supervisor, in a mostly coherent towering rage - pointing out that I assume a doctor wanted it for a reason, and that they could jolly well take the blood with hand orders, run the tests, and straighten the paper work out on Monday. He said, "Well, we only know what one of these three tests are. We might have to throw out the blood." Then run the one you know. I'll risk vials 28 and 29 from my arm being thrown out.
Patti was a wreck. Worried about me, the word "cancer", and finances. It was a tense ride to Becca's.
My Mom was worried about the anti-biotic I didn't get. "Rick, you need it." I snapped at her "You don't know what I need." Patti came in. "Rick, stop it!" she warned. "No!" I raged, punching the pantry door. I lost it the one and only time. At least so far. I took everyone in the house with me. I remember shouting, "I will not be wrapped in a blanket and tucked into a hole to die!". The rest was pretty much incoherent babble, but we were all crying. Patti had walked out of the house, unable to cope.
When the storm had passed, I checked on the kids. They seemed OK. I was told Joe had been crying. I picked him up by his ankles and said, you know that was not your fault, right? He shook his head yes. You were just upset because I was upset? He shook his head yes. I told them that this was a hard time, and there may be more adult temper tantrums before we are through. Becca went out in the car looking for Patti. Patti came back long before Becca did.
Eventually, we got the van packed, the folks loaded and headed back to Sturgis. The folks headed straight home to Fennville from our house. We unloaded, got a bite to eat, and pulled out the ice cream for a dessert treat. The power had been out. The ice cream was melted and ruined. Bad end to a bad day.
I had a dark stool Sunday morning. It didn't really look like the ones that started the adventure. Patti wasn't satisfied. "You've got to go to the emergency room". Which one, Sturgis or Kalamzoo, if that's where we're going to end up? I convinced her that it was 12 hours old, it could wait till we went to church and asked a few people for advice. She allowed me. Word had already gotten around. Patti was nearly crying before she got into church. Against her better judgement, I got up front to sing with Ember. Patti wouldn't go. During the passion in the pews, I saw how long it was going to be, and allowed how I might sit through it rather than stand.
Thought and advice led me to decide on Sturgis emergency room. We took the kids home, took our sample, and went. I explained why we were there. I just need this checked for blood, and if present, I should have a hemoglobin test done. There was no blood in the stool. "I'm outa here!". No go. This is why health care is so expensive. They stripped me down. They weighed me. They poked and prodded. They drew blood for a full blood and chemistry panel on me. Why? Because that's what they do. Yes I know the liver enzymes are screwed up. I know the bilirubin's high. I know I'm a bit anemic, but I left Cleveland Clinic at 9.1. I'm at 9.8? Great! Why was the stool dark? Probably because I took Pepto-bismol the night before.
We can't be doing this every time my stool is dark. Can you prescribe some of those little test kits for me, or is there a home one? No one had heard of such a thing, but the nurse called a pharmacy, and lo and behold there are home test kits! $8. Rather cheaper than the emergency room.
Sunday and Monday were rather a blur of well wishers as we began to discover just how many people knew our situation. Patti gradually got to where she could talk about it without crying. We got meals. We got hugs. We got many, many prayers from apprently every denomination in Sturgis.
Tuesday we headed back to Cleveland. Patti was dreading it. I wasn't sure why. We had the seats out and the air mattress in the back of the van in case I had pain or was woozy from testing. We got there just barely on time. They were prompt ushering us in, but then of course we had to wait a half hour in the little examining room.
The Saturday testing had all been for naught. There was no results from the twenty-four hour urine. The blood test had never been entered into the computer. We were not pleased. Then the oncologist started talking. She didn't have that much to say. She rather looked as if she expected we already knew. Knew what? The cancer I have is incurable and essentially untreatable. They can treat me for symptoms (ie pain) only. Chemo will not work on slow growing cancers. Radiation kills the liver. Surgery can be done to remove a lobe, but besides the three larger tumors, my liver is riddled with tumors the size of sand and gravel. I will not be eligible for a transplant because it is a metastasized cancer. It is coming from a mama tumor somewhere else in the body that will just fill the next liver with cancer.
We went next door to get the blood tests done again. We also found another container for a 24 hour urine. This one said "refrigerate". Must be why they had no results from the last one.
We stopped at Becca and Jeff's and filled them in. We asked them not to tell anyone until we talked to the kids. Of course, they couldn't honor that request. It was too hard. I drove part of the way home. Patti was crushed. We got home, the kids didn't ask. They were showing us the planets outside. We thought we would wait till the weekend, but realized we would be lying to people all day. Too hard. So we talked to them Wednesday night. We told them everything we knew. We said I might have weeks, months, or years. We just didn't know. We said the doctors have no treatment for it, but once in a great while, there are stories that people get better from cancer miraculously. Depending who you are, it is cited as proof of the power of prayer, or the curative power of ginseng.
We put the air mattress upstairs, and all slept together that night. Except Ember, who finished her school work and retired to her own bedroom.
Today was a hard day. I could not focus all day, except to walk off meals. But I mostly skipped supper, and by night time I was fully alert. I spent this night (Wednesday 4/16/03) writing this down.
Copyright 2003 by Rick Clark and heirs. Non-commercial users can link to or copy freely, so long as copies are in whole and include this copyright notice. Commercial users please contact firstname.lastname@example.org or the current address at web site rbclark.sturgis.mi.us. If you found a way to make money off this my wife and kids (or I. I might be around a while yet.) could use a piece of it.