Part I: Leading to a Diagnosis (August-September 2000)
Part II: It's Back (January-February 2001)
The first week of August 2000 I was nearing the end of a summer math course at Portland State University and eating lunch out every day. Around August 4th, my stomach didn't feel quite right. I didn't give it much thought. Perhaps it was something I ate. Little did I know how much time I would spend wrongly convincing myself that "it was something I ate."
A few days later the feeling hadn't gone away. How annoying! It was like having gas always trapped in my intestines. Could it be menstrual cramps? I didn't think so. So I dug out the trusty Complete Home Medical Guide--a hefty book of excellent simplified descriptions of everything medical. Or at least everything common, as I would later realize.
I paged through the charts that are meant to lead you to a self diagnosis. Then I turned to the section on the digestive system and read through the diseases. Stomach cancer? No, too young. Peptic ulcer? Wrong symptoms. Appendicitus? Definitely not. Perhaps it was irritable bowel syndrome or lactose intolerance. I thought maybe it had gotten worse after I had had a lot of milk. Yes, that must be it--lactose intolerance. "What a shame!" I thought, "I love almond steamed milk." I stopped having milk and dairy products and the gassy feeling almost seemed to go away.
The feeling came back after a day and it was getting worse. It had become more than just uncomfortable; I was beginning to get some cramps in what I correctly assessed as my small intestines. And when I pressed on my lower abdomen, my small intestines hurt as if they were inflammed. Gas, I thought, gas must be trapped in my intestines. Once again, I convinced myself it was nothing.
On August 14th, I went to the doctor for my yearly physical exam--this was usually the only time of year I ever went to see my doctor because I was always pretty healthy. Everything was normal. That's all I needed to hear to convince me that nothing was wrong.
My doctor suggested I take Lactaid for the lactose intolerance. She said that it could have been caused by a stomach virus. Of course, we were both wrong in the end--I never was lactose intolerant. I could have had all the milk in the world and it wouldn't have made any difference. But I tried Lactaid pills because I didn't know that yet and, surprise, they didn't work. So I went back to avoiding all dairy products vowing to try Lactaid again once I figured out what else was bothering my stomach.
The cramps became really painful. I still went out nearly every day and I had started taking Japanese lessons once a week. But whenever I was home, I had taken to lying on my bed listlessly for hours just waiting for the pain to subside. I tried to relax during the waves of pain hoping that if I relaxed my muscles, my intestines would relax too. It didn't work.
I was still convinced that the cramps were being caused by what I was eating. I would eat a meal, experience cramps, blame it on a certain food, then stop eating that food.
I continued to flip through the Complete Home Medical Guide. I was sure it couldn't be anything serious because my symptoms didn't fit with any of the serious conditions--I didn't have a diarrhea, constipation, blood in the stool, all I had was cramps. I didn't want to go back to the doctor because I didn't want to have any of the invasive gastrointestinal tests that were described in the book. But, I decided that it was either food intolerance, Celiac disease, or Crohn's disease. It had become too painful to be just irritable bowel syndrome or lactose intolerance.
Finally, I went back to my doctor and told her about the cramps and how I thought food was causing them. She told me, "Well Patty, you've painted a classic picture of malabsorption. The only thing I know for that is an avoidance diet. Let's make a list of the foods that bother you." I had not only fooled myself, I had fooled her too. And once again we were both wrong but neither of us knew it. I felt reassured that it was nothing serious and fortunate to avoid any tests. My doctor recommended I take Pepto-Bismol to relieve the cramps--it worked, but only sometimes.
By this time the list of foods I was avoiding had grown to include practically everything. I would no longer eat fresh fruit, fresh vegetables, fruit juice, caffeine, dairy (including milk and yogurt), gluten (wheat, barley, malt, etc), anything which I deamed acidic (including vinegar), and chocolate.
So what was I eating? Not very much. Just some well-cooked vegetables, meat, rice, and soy milk. I was hungry, but I was afraid to eat for fear that the food would cause cramps. I was losing weight. Some people ask how I could have ever given up chocolate. You'd have to know the pain I was in to understand. I would have given anything to make it stop. And ultimately I gave up much more than chocolate.
Even without all those foods the cramps wouldn't go away. I remember thinking, "I can't seem to win. Every time I stop eating a certain food, I feel better but not for long."
In late August I went summer skiing at Timberline. I drove the hour and a half drive to the mountain with my mom. I was on the slope by about 8:30 AM. At 10:40 AM I went in to take a break and never went back out--I was too tired. I couldn't understand why. I normally skied all day without trouble and there I was going home after a measely two hours. I was weak and the thought crossed my mind that I might not be able to function at Stanford when classes began. I wasn't sure how I'd be able to pay attention to lectures if the cramps continued. And I didn't know if I'd be able to concentrate on my work.
On the Saturday of Labor Day Weekend my mother was inquiring about gastroenterologists that I might see. I was preparing to leave for SoCo (Sophomore College, a two and a half week intensive program for selected Stanford sophomores) that week. After talking to several people, it was determined that I could go down to Stanford and see someone at the Palo Alto Clinic. "These things take several weeks," we learned. "The doctors do some tests, wait for the results and then do more tests. It takes a long time to figure out what the problem is."
No one knew how much pain I was in--not because I was trying to hide anything, but because I don't show pain the way most people do. Even my parents couldn't tell exactly how much it hurt. It took all my energy to deal with the excruciating pain; I didn't have any energy left to talk. The cramps were severe and would last for fifteen to eighteen hours. At times I would get very quiet. Other times I would lie on my bed and stare at nothing. Most of the time no one would have known anything was wrong. The times when it was noticeable, no one would have known the level of the pain I was in.
Keep this in mind for the future: I may look healthy and be sick, I may look okay and be in pain, I may look rested and be tired. In general, I may look fine and not be. And if I don't look fine, then something must really be wrong. If my parents can't tell, you probably can't either. As I said, it's usually not that I try to hide anything, but rather that it takes so much more energy for me to act sick or injured that I tend not to. My mom tries to remind me to TELL PEOPLE when I don't feel good. But it's hard to remember that kind of thing when you're feeling drained. On the other hand, if I look fine, I may be fine too. It's hard to tell sometimes.
That night I slept next to my mom--that is, if you could call it sleep. The cramps would wake me and keep me up for hours. I would lie there and groan. The next day, my mom called Dr. Baumeister who said he'd see me that day.
After an hour of detailed questioning followed by a physical exam, Dr. Baumeister was very direct. "I think this is something serious and we need to figure out what it is. The fastest way is to admit you to the hospital tonight, I'll scope you tomorrow, maybe get a CT after that." And what about Stanford? What about SoCo? I had spent my whole summer looking forward to it. Couldn't I go down to Stanford for the tests? "I don't think you should," he told me. I said I'd think about it.
I only really had a few minutes to decide. By then even I was questioning whether I could sit in a class and function for even an hour. So I conceded to the tests with the hope that maybe I could still go to SoCo. I was admitted to Good Samaritan Hospital shortly thereafter and given a nice single room on the medical floor.
An IV nurse came in to start an IV in my vein, but she didn't attach it to anything (i.e. bags of saline). Then I saw what I'd be swallowing all night. It was a 4 liter bottle of salt water called Colyte and affectionately known to the medical community as GoLightly for its capability as a laxative. "We try to have you drink it within 3-4 hours," the nurse told me. I was given a styrofoam cup and left with my enemy for the night.
I'll admit, the first time I saw the GoLightly, I didn't think much of it. I'm used to drinking a lot of water, I thought. So I poured myself a cup of the clear fluid and took a sip. It had a startingly salty taste, but worse yet, it was luke warm. I gagged. I don't know why, but I tend to react that way to even mild bad tastes and sometimes, to pills. At the time, I didn't think it that bad, but after a few cups I was gagging so often feared I would throw up and hence all my effort would be in vain. So I pressed the call button for a nurse and asked if there was anything that could be done to make it easier to swallow the stuff. She left to ask the other nurses and returned with a cup of Sprite.
The Sprite, for the most part, kept me from tasting the GoLightly and I managed to drink quite a few cups right away. Unfortunately, this made me feel terribly bloated and even slightly nauseaous. For this I was prescribed 0.50cc of Inapsine all of which was injected into my IV. This gave me terrible jitters while also making me slightly sleepy--a bad combination. I felt both like jumping up and down and crawling under the covers and sleeping. If you think that sounds contradictory, imagine how it felt. As I described this feeling, the nurse explained that that was the same feeling that IV drug users wanted when they tried to get high. I can't imagine that that would be the case. I don't think anyone would ever want to feel that way. I later learned that 0.50cc was twice the dose any anesthesiologist would ever give to a person my size. I also made sure that nobody ever gave me Inapsine again.
I eventually finished the GoLightly at 4AM. I didn't actually finish it per se, but rather drank enough to satisfy everyone. It hardly mattered that I had stayed up until 4. After getting the Inapsine, I could hardly sleep anyway. Not to mention, I had to keep going to the bathroom. And all that really mattered to me was no more GoLightly!
I was woken the next morning at nine. It seemed early to me, but the nurses had tried hard to let me sleep as long as possible. I was beginning to feel the rhythms of the hospital.
After a few hours, I was taken for the colonoscopy. When I saw Dr. Baumeister, he said he hadn't gotten much sleep and I said I hadn't either. I was thinking, "Great. A doctor whose about to do an invasive procedure on me is sleep deprived." I am not naive when it comes to sleep and sleep deprivation. I have paid attention and read the studies. Unfortunately, since I didn't get enough sleep after reading the studies, I'm not sure how much of them have remained in my memory. But, that aside, I understand the general gist: sleep leads to fewer mistakes, better learning capability, and better overall health. With that in mind, I was sedated.
The first thing I was told when I woke up was that I had a tumor in my intestines and that I needed surgery. Dr. Baumeister had already contacted the surgeon. It was not until later that I learned exactly what was inside of me.
The tumor was in a peculiar position. I was attached to my small intestine and had been pulled into my large intestine effectively pulling my intestines inside out. The term for it is intussusception and it can be very dangerous--even cause death, but I did not know that until just recently.
It did not occur to me to be worried for there was no time for me to become worried. The next thing I knew, Dr. Schuman came in to discuss what he would be doing in surgery. Then I was signing a consent form and being wheeled into surgery--the same day as the colonoscopy--my 19th birthday.
The plan was to make an incision, pull the part of my small intestine that had moved into my large intestine back to it's rightful position, cut out the tumor, and put everything back together. That is exactly how it went.
When I woke from surgery, all I remember is being wheeled into a hospital room, seeing my parents, and having to go to the bathroom. It was disorienting to me that I was in now room 604 which looked exactly the same as my previous hospital room 404 except that it was on the sixth floor (surgical floor) instead of the fourth. As soon as I got in bed I fell asleep, groggy from the anesthesia.
I spent a couple of days recovering in the hospital after surgery. I walked around a lot--dragging my IV pole and I was constantly hungry because they wouldn't let me eat or drink anything. The surgical residents woke me up every morning at 6AM just for the sake of examining me and asking me how I was feeling. Eventually after a few days of this routine, Dr. Schuman came in to tell me I could start eating real food again--that was the good news. The bad news was that the tumor that he had removed from my intestines was lymphoma. Dr. Baumeister had already contacted an oncologist whom I would soon meet.
January and February (2001) were the best months of the year. Why? Because I spent nearly all of both months at Stanford. My friends were wonderful, my single room was fantastic, my classes were fun! I made it a point to go to as many events as I could--speakers, performances, basketball games.
On January 12th, I flew home for my last (6th) cycle of CHOP chemo. I was back at Stanford within a week feeling pretty good. I had some follow-up visits with the doctors at the Stanford Medical Center for the usual blood tests and injections. And by February I was free--no more doctors appointments, no more shots, I was done! To celebrate this accomplishment, a rather large group of my friends held a wildly successful surprise party for me. They took me out to dinner at a nice restaurant in Palo Alto and then we all went bowling. It was certainly a highlight of my quarter.
As good as life was at Stanford, I was not recovering from chemo as I had expected. I was not regaining energy the way I thought I would--in fact, it seemed as if the fatigue was increasing. During previous cycles of chemo I had experienced some mild abdominal discomfort usually about three weeks after the chemo. Sure enough, by the beginning of February I was feeling the discomfort again, but it seemed to linger. There were even a few days when I felt like I could not stand up straight because of the pain. Still, I expected it to disappear so I waited.
Over a week passed and the discomfort remained. It wasn't too bad, but I went in to see a doctor anyway. I learned that there were several things that could cause such a feeling, the primary thing on my doctors' minds was scar tissue which formed after surgery which could cause temporary and usually self-resolving partial small bowel obstructions. This seemed like a reasonable explanation. My (Stanford) doctor did not think that the pain was related to chemo or lymphoma. This also seemed reasonable. There was no reason to worry.
But when the pain got worse, the cause became much clearer. The night of February 23rd the pain woke me up several times. At 7AM the next morning (a Saturday) I lay in bed in pain I thought to myself, "Something is not right with my body." I took an extra strength Tylenol which made me feel better just long enough to get through a 9AM-2PM activity that I had that day. But when 2PM rolled around I found myself on the other side of campus with only a bike to get back to my dorm (which was about a mile away)--eventually, I made it back. At that point, I was certain not only that something was not right with my body, but that I needed to do something about it.
Since it was Saturday, I called the oncology physician on call at the Stanford Medical Center and told him I was coming in. As I grabbed some stuff to take with me, I jotted a quick email to my Stanford doctor and my home doctor. I was about to run out the door when my Stanford doctor called my room, "I got your email," he said, "What's going on?" He said he'd meet me when I got there and he did. (I thought this was rather exceptional considering it was a Saturday.)
The doctors did their usual questioning and examination. I said the pain was about a 7 on a 1-10 scale. [If you're wondering how that compares with how I felt in August just before my lymphoma was diagnosed, the pain was much worse in August--probably like a 12.] I explained how the symptoms I was experiencing were similar to those that I felt in August. I said, I thought it was the lymphoma. And the doctors listened. "Patients sometimes just have a feeling about these sorts of things," said my doctor. But what I was feeling was NOT some sort of psychic premonition. No, it was merely a flashback to my pain in August. I recognized the pain as the same pain I had experienced when an enlarged lymph node partially obstructed my gastrointestinal tract in August. A CT scan confirmed that I was correct.