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Journal of a Cancer Survivor
Lizards Licking My Lips
To realize there is chronological order in life as we progress through it is an understatement. When we attempt to relate our experiences incurred along the way, logic and chronology quite often become blurred. Thus, the reality of life is sometimes stranger than fiction...........
Our family and friends sat in the waiting room and chatted on about everything except the matter at hand. There were eight in our group. We had gathered early that morning and by nine o'clock the waiting room was pretty crowded. Each group that arrived seemed much like our group. We joked back and forth while some drank coffee and cold drinks or commented on articles in the magazines, and we all enjoyed being together.
Finally, the time had come to say our farewells. Everyone hugged me and wished me good luck. Promises of getting together in awhile were made and I was whisked off on my journey. It was the most incredible journey of my life.
My recall of events is extremely vivid if not accurate in the sequence in which they occurred.
* * * * * * * * * * *
As I pulled into the parking space near the garage I noticed a large group of motorcycles. I had the uneasy feeling of having ventured into a rather unsavory section of the beach, but the club across from the parking area was definitely the place I was suppose to go. I crossed the road and entered the club. It was very dimly lit and I was surprised at how few people were there. The seating was unusual as there were rows of padded benches with backs and each section was separated by a waist high partition. The stage area was visible from all seats, but there was glass all the way to the ceiling directly in front of the stage. Behind the glass were bright colored lights.
Once my eyes had adjusted to the darkness of the room, I noticed off to one side was an open area and there were children sitting on the floor playing. It occurred to me they might be immigrants from So. America, perhaps illegal immigrants. They were all fairly dark skinned, big brown eyes and black hair, similar to our American Indians. None of the children were wearing clothes and they looked so pitiful.
As I sat wondering about these children, a waiter approached and asked if I wanted to order a drink. He spoke was a slight accent, seemed to be of the same origin as the children, and I wondered what sort of club this was and why I was there. I ordered a glass of wine and decided to wait and see what this was all about.
After awhile I was beginning to not feel well. Two women had come in and were in the cubicle next to where I was sitting. One of the women spoke my name and said she was there to take care of me. My vision had become blurred a bit and I sort of reclined on the bench where I had been sitting. Suddenly, there was a huge square blue light shining on me. I had the distinct feeling that perhaps I was part of the show. Why else would there be a light focused on me?
The two women who had come to my assistance reassured me that everything was okay and they would take care of me. I told them I thought my daughter was there somewhere because I heard her off in the distance. She was talking to someone about the possibility of working there part time. I asked them to find her for me because she shouldn't be in a place like this, let alone consider working here. I had called out her name but she couldn't hear me. And that damn blue light; would someone please turn it off!
The street I was on lead to the water and there were homes down there that were worth a million dollars. Most of them had yachts tied up at the piers. The men in the car I was following boarded a speedboat and headed out into the bay. I boarded one of the yachts and followed. They must have a rendezvous somewhere off shore and I was positive they were smuggling drugs. I was also sure there was some connection between them and the club I had been to at the beach.
Maybe I was becoming paranoid, but as I was following the boat out into the bay, I became aware that there was a bright blue light overhead and it was very annoying. Besides, I was afraid it would attract attention to me and the men would know they were being followed. Then I realized that I had lost sight of the speedboat. I turned the yacht and headed back to the pier.
I got in my car and headed back out to Shore Drive and on down to the area where the Mardi Gras was being held. Everyone was dressed in bright costumes and having the time of their lives. I approached the big house with the wrap-around porch. There was a bar set up and people were drinking and dancing. From the porch I went through the gated front door and into the house. It seemed there were hundreds of people inside as well. I recognized some of them even though they were wearing masks, but I didn't have one.
My husband was suppose to meet me here, but I couldn't find him. He knew so many people that I was sure he was just tied up somewhere in the house and would find me eventually, so I sat down and ordered a drink.
Was this some sort of fashion statement that I didn't know about? That big square blue light was shining on me where I sat. I thought to myself, "with all these people, my husband would surely be able to find me sitting under this bright light."
Quite some time went by as I sat watching the festivities. There were a lot of women circulating among the guests and I wondered if they were "ladies of the night". That was a strange thought, but sometimes we sense these things. They were all elegantly dressed and there were a lot of men that seemed fascinated and attracted to them. My imagination amused me.
I was startled when one of the women approached escorting my husband to where I was sitting. The blue light had disappeared although I don't recall at what point, so I'm sure he needed help in locating me. The woman spoke briefly and left. I asked about her and my husband said she was just someone who worked there during Mardi Gras and he knew her from high school.
I was so glad to be back at my apartment. To my surprise, all my relatives were there. Even my son-in-law's mother and his daughter, Samantha, had come all the way from Michigan to visit. Sam had a new puppy with her and he was so adorable. The Christmas tree looked perfect and everyone had put gifts under it. I brought out their gifts and put them under the tree, too. This was going to be a wonderful Christmas. I hadn't expected them all to come, but I was delighted.
The two women who had assisted me at the club when I felt ill dropped in to visit. I have no idea why, but they had brought that big square blue light and told me I had to sit under it for a little while. All of my guests retired to another room, and I laid on the sofa under the light for about a half-hour. I was really getting annoyed with all this. I told them in no uncertain terms to shut that light off!
There was another very annoying thing going on, too. I believe it started while I was at that awful club at the beach. There was something like a glass fish tank but instead of fish and water, it had grass, rocks and lizards in it. Every so often a lizard would lick my lips with its slippery little tongue. It felt cold and wet and I didn't like it at all. Yuck! Between the blue light and the lizards, I just couldn't figure out what was going on and what any of this had to do with the drug smugglers at the bay.
Well, it really didn't matter anymore. I was finished being an undercover agent and was content just being back at my apartment with family and friends. I loved my apartment because it was way up on the top floor overlooking the bay and everything was relatively maintenance free. Although unusual for an apartment building, there was room service available if you didn't feel like going out. It was almost like a hotel. There was a lovely balcony off the living room and watching the sunset over the bay was my favorite past time. And of course, all summer there were boats out on the bay.
I must have been sleeping a lot because I couldn't seem to fully understand my surroundings and had no idea whether it was day or night. There were a number of times I was startled out of my sleep and a nurse would apologize for frightening me but said she was putting some ointment on my lips because they were chapped. It felt cold and wet. It brought back some vague memory that I couldn't put my finger on at the time. Then it came to me... the lizards licking my lips.
My frustrations were beginning to mount. It became apparent to me that I was in a state of confusion. A nurse had come into my room to check on me and I asked her if she would take me down to my apartment. She asked me why I wanted to do that. I told her it was because it had been a very long time since I had been there and I would feel much better sleeping in my own bed. She said "No", and left the room.
Later on my husband and daughter came to see me. They brought me cold drinks and snacks. I asked my daughter to put the cold drinks in the refrigerator and pointed at the door at the foot of my bed. She told me it was not a refrigerator, it was a closet. I could see that it was a refrigerator, but didn't feel up to arguing so I let it go. After she and my husband left, I rang for the nurse and asked her if she would put my drinks in the refrigerator, indicating the same door I showed my daughter. The nurse said, "That's not a refrigerator, it's a closet." I told her my daughter thought it was a closet, too. She asked what I had put in there and opened the closet to check and make sure there was no food or drinks in the closet. This was insane! Nothing seemed to be what I thought it was.
Every day the nurses and/or aides would come in to change or straighten up the bed. As is the usual custom in the hospital, there is a large pad under the patients so they can be easily adjusted when they slide down in the bed. Customarily, two nurses or aides would get on each side of the bed and grasp the top and bottom corners of the pad and lift the patient back into position. Now, I realize they deal with patients of all sizes, some quite large, in the daily course of their work. However, I weighed 103 lbs. and this always seemed to slip their minds. So every day they would grasp the pad and fling me nearly through the window. Then they would comment that, "Oh! She's so light! Didn't expect that!" Sometimes the landing really hurt. I use to accuse them of deliberately trying to throw me out the window. And this would happened every day!
I was watching the ACC basketball tournament on TV one evening and got the urge for pizza. I rang for the nurse and asked if I could order a pizza. Instead of simply telling me yes or no, she asked if I could pay for one. I thought this was stupid because obviously if I couldn't pay for it, I wouldn't ask to order it and that is exactly what I told her. Then, she said, "No." I found out the next day that such a request is allowed, but only up to 9:00 p.m. I had asked to order pizza at 11:00 p.m. The nurse could have explained that instead of being so rude!
It was a Sunday and visitors came all day and into early evening. It was great to see everyone and we laughed and talked and enjoyed the whole day. Even though I was exhausted, I hated to see the last visitors leave. When they were all gone, I watched TV for a while when I realized I felt chilly. Someone had left a fleece jacket on the hook by the door and it looked so warm I just had to have it wrapped around me. I called for a nurse and asked her to get me the jacket. She promptly told me I could not go out anywhere. I informed her that I did not want to go anywhere, I couldn't even get out of bed. I just wanted the jacket around me because I was cold. She left my room in a huff and promptly returned with a blanket and put in over me. sheesh........What a grouch!
There was another incident that made me chuckle. I'm not exactly sure if it had to do with the bed pan, or spilling my coke, or what, but something I said upset the nurse and she told me she didn't think I was "stable", and she left the room. I guess it was her polite way of telling me I was crazy. After all, I was at a stage of recovery where I was somewhat aware of my frail condition and irrational state of mind. I would have thought the nurse (or aide) would have been a tad more indulgent.
There were other such episodes, but they seem to elude me. Time has made much of my experience vague, and the lapse of memory is probably for the best. I look back on most of it and have to laugh because I realized my behavior was "drug induced". It is only that which I recall with clarity that I relate here. It is true that most of it did not happen, but it is what I remember, exactly as I remember it!
To explain this rather bizarre journey, one has to understand what happens when undergoing major surgery. In my case, although the surgery went fairly well, the day after surgery I was stricken with Acute Respiratory Distress Syndrome (ARDS). It is a condition in which the lungs "freeze" or become like "brick". It is a condition with only a 50% chance of survival. This condition lasted somewhere around 16 days when the doctor asked permission from my family to use an experimental drug being developed at Eastern Virginia Medical School. It worked.
It is for the patient and the close family and friends that I attempt to shed some light on what occurs when we are undergoing surgery. I feel compelled to recount my experience in hopes that others who are facing cancer surgery will understand that through all of it, for the patient, there is no pain, there is no sense of fear. There is only a drifting off into a fantasy world where the imagination takes you on a wonderful journey that perhaps you will recall in detail when it is over. But you will have absolutely no recollection of the surgery or any of its complications should there be any.
As for that big square blue light; it was not that "light at the end of the tunnel". I can only assume that it had to do with the OR because the two women who kept popping up in my story always came when the light was on. They were obviously the nurses taking care of me in intensive care. I was able to make the connection between my dream state and reality after my husband and daughter and my best friend recounted over and over what I had gone through in the 36 days I was in the hospital. Having no recollection of that length of time can be a frightening experience. It is during these times that family and friends are distraught beyond consolation. It is important that they understand the drug induced state the patient is in prevents any memory of what is happening. Although the patient may be connected to all sorts of scary machines with tubes coming from all parts of the body and needles from IV tubes, the person you are watching over is unaware, completely oblivious and most likely off on some wild adventure. If there is any pain or discomfort, it will likely come during the lengthy recovery period when the patient is awake and rational.
It is amazing to me that I survived after hearing about my ordeal. The up side to all of it was that I have participated in an ARDS research program being done at the Medical College of Philadelphia and perhaps will have been of some help in finding out more about this condition. I also have a very strong feeling that there is more I am suppose to accomplish. I hope that by telling my story it will, in some small way, help others who are facing serious illness and major surgery. If I could give just one small bit of advice it would be, no matter what you are facing in the hospital, dignity goes out the window; there is no pride, no shame, and the only way to get through it is with a sense of humor!
