The Catheter and The Pig

With the wig my Grandma got me. We named it Sharon Tate.

Dr. Sapra was going to India for a month. I found out later that he went there once a year to visit his family. To have my chemo treatments during the time he would be gone, he assigned me to another oncologist.

Dr. Moss was shorter than me. He resembled my uncle which made me feel that I could trust him. He didn’t spend long with me, but in that short time I learned that he had no sense of humor. At least not like mine! He sent me into a well situated chemo room with big plush recliners, a couple of TVs and lots of reading material. Being used to Dr. Sapra’s office, I came with all my normal supplies.

The nurse had me sit down and she stuck the needle in my arm to take blood for my tests. When she returned, she set me up to receive chemo. She’d started the chemo in the bend of my right arm. It felt kind of strange to me, but I fell asleep before I said anything to her about it. The rest of that trip was uneventful.

I returned two weeks later and received the same treatment. This time, the nurse went into the bend of my left arm. My left arm was pretty useless, anyway, but she was able to make it stick.

I faithfully did my job of healing while Dr. Sapra was away. When he came back, his nurse was out sick. Determined to give me my chemo, Dr. Sapra tried to stick me himself. The only place he could find that still had a vein was inside my right wrist. Within seconds, my wrist had puffed up to the size of a golf ball. Dr. Sapra had gone through the vein with the needle and it was puffing up. Dr. Sapra pulled the needle out and tried his best to bandage up my arm.

“You need a catheter! Tomorrow – we get you a catheter!” he told me. I had no idea what he was talking about. He got his office manager on the phone and they scheduled me an appointment with the surgeon and pre-op starting the next day. After he made all the appointments he sat me down and explained to me what a Hickman Catheter was.

The idea of tubes sticking out of my chest scared me half to death. I was really upset at this point. I went home and told my parents. Mom said she would take me in for the appointment to have this thing “installed”.

I went in to have the surgery two days later. I ended up with the same surgeon. I don’t remember much about the surgery itself, since I was under anesthesia. When I woke up, I had a new addition to my body. I was all taped up all over my chest and neck and I had a long white tube sticking out of my right breast that urned into a Y becoming two tubes. At the end of each tube were little hard lumens, about an inch long each – one red and one blue.

Once I got home, my whole chest became quite painful. I took a lot of Vicodin and tried to sleep. This is when it became increasingly uncomfortable. I am a side sleeper, and with this tube coming out between my breasts, I felt I was in danger of pushing it in or around and dislodging it if I slept on my side. I could not fall asleep while on my back. At this point, I had gained a significant amount of weight because of the steroids that I was on, and it inhibited my breathing while lying on my back.

I had started getting up in the middle of the night because I was restless during the period I was receiving chemo. I would watch TV. Thank goodness for TVLand and Three’s Company! After the surgery was one of those times. I sat around trying to get tired enough to fall asleep in whatever position I was in and came up with an idea! Try sleeping with a towel between my breasts! It wasn’t the most comfortable thing in the world, but it kept me from worrying as much.

The next day, my mom and I tried to learn how to clean the tubes out. There was a lot of maintenance involved in this tubey thing. Once a day we had to clean “The Tubes.” It creeped me out. Mom had to fill up two plastic syringes with Heparin and two with saline and shoot them into my tubes to keep them clean and to keep them from acquiring clots. We had a home health nurse come by to teach mom how to take care of everything. The first time it was done, I could taste the saline in the back of my mouth and in my nose. I could not figure out why. I started being able to tell the difference between the saline and the Heparin. It wasn’t a nasty taste, but it wasn’t pleasant, either. Then the nurse taught my mom how to clean the tube site. This part was much more involved with sterilization. There were sealed packs containing sterile tape, gloves, swabs, etc. It made me so afraid to move.

The home health nurse had me lay on the end of the bed, so I was kind of stretched out in the chest area. There was a clear sheer plastic window taped across my chest and over the tube insertion point. She removed that first. Then she opened the sterile pack after throwing away all the trash and washing her hands. She put on a mask and some gloves, and rubbed a swab of alcohol over the site. Then she wiped any excess goop off of me. After that, she rubbed Betadyne with another swab all over the area. Once that dried a little she placed a new window bandage over the site. It took a lot longer than it sounds. It wasn’t painful the first few times, but it was a little scary. After those first few times, though, the tape started wearing on my skin and it hurt terribly. Because of this, I also was unable to take showers. I had to take baths and be sure not to get any water or soap near my chest. After that, I never did smell too pretty or feel very clean.

Once we had done all that, mom and I set out to find a better solution to my sleeping problem. I had taken to sleeping with my blankie from when I was a little kid and a stuffed Piglet (Pig) that my mom bought me a couple years before that, just for some security. We decided that I should try using the blanket wrapped around my pig and sleeping on my side. It worked! It was comfortably soft, and just the right size to fit between my breasts to keep them apart and keep the tube from moving. I know it sounds silly, a 27 year old woman with a security blanket and a stuffed animal keeping her company while sleeping, but this was truly a wonderful thing and a huge relief for me.

This is Pig. He has been through a couple of battles with me and looks it.

The Shot

I am a little fuzzy on the order that the next two events come in, so I will do my best.

At this point, my hair hadn't really started falling out yet. But I was feeling run down, and my ability to concentrate was going down the tubes. I was pretty nauseas most of the time, and dizzy like being severely drunk most of the time. I had a strange taste in my mouth and food just didn't taste. The only thing I could taste was really spicy food or sweet food (fruit soda, juice). So, I ate a lot of all that. The problem with that was the chest searing heartburn. It was so bad, I couldn't sleep at night or even sit comfortably most of the time.

I was ready for my next chemo. It had taken a few days to start getting my chemo reactions from the first round, but they kind of tapered off after a week. This time, I went to work and left early, and I went by myself. The nurse took me into Dr. Sapra's office and he did a couple checks on me, weight, and checked my side effects. Then they drew blood and started me on IV full of saline and had me sit until the results were back. A bit later, the nurse came back in and pulled out the IV. Something was wrong. Dr. Sapra came in and explained to me that my White Blood Cell count (WBC) was too low. If I were to get an infection or a fever, I could die. So, they had a shot prepared for me. It was called Neupogen. What it was supposed to do was artificially raise my WBC count so I would be able to have chemo in the next couple of days.

The nurse came in and plugged a shot right into the underside of my arm. The shot was ice cold, and hurt bad. I made another appointment with Dr. Sapra and went back to work. I was back at work for about an hour when it started. My cube mate and friend, Kim, was in a meeting. My hips started to ache. I shifted positions, thinking it was just the way I was sitting. Soon, the pain was shooting down my legs and up my back. It was so excruciating that I could barely move. I was barely able to breathe and I began to sweat. I didn't understand why I was feeling like this. I thought maybe it would go away if I walked around a little, so I got up and turned around. That was as far as I made it. I just stood there. The woman who sat across from me, Angie, saw that I was immobile and tried to help me. A bunch of people ended up gathered around me, no one knew what to do, including me. I was trying not to scream because of the pain. My friend, Ron brought the fan over and put it up to my face. Angie went to get Kim from upstairs so she could take me to the ER.

Kim came down and called my mom, and told her that she was taking me to the ER. The pains I was having were so severe, everyone at work was comparing it to labor pains. She drove as fast as she could during traffic. My mom said she would meet us there, and she would leave a message at the house for my dad to met us there. When we got to the Hospital, Kim helped check me in. I had a paper from Dr. Sapra saying that because of my immunities being lowered, I could not be in the waiting room for longer than 20 minutes. I was there for close to 2 hours. The pain made me sick to my stomach. Kim went and fought with admitting to get me in sooner. My parents were freaked out. I had rarely ever seen my dad so stressed out.

Kim finally said she had to go to take care of her kids. She left and they finally got us in. They only let one of my parents in, so my dad went home. They ran all kinds of tests on me, but could find nothing. They gave me some muscle relaxers and set me up with an appointment with my primary care doctor, Dr. Don the next day. The muscle relaxers didn't do anything except make me sleepy. The pain subsided slightly as the night wore on. I was tired the next day, but not in as much pain.

I went and saw Dr. Don when I got off work. She had freaked out when she heard what happened because she had given me a PAP the day before all this happened, and she thought for some reason that she had caused my pain. It turned out to be bone pain. No one had explained to me what Neupogen actually does. It pulls blood cells from your bone marrow. It starts from the densest bones – usually being the pelvic area. That's why my hips hurt so bad. It took a few days for all the pain to go away completely, but I was able to finally get chemo.

Questions? Anyone?

I am hoping to jar my memory or something. At this point I am drawing a bit of a blank. But, I'll get back on it.

So, I am opening the floor to anyone who has any questions... I have seen the keywords that people have used to find this blog, and for some of you, I may be able to help you.... that is what this is supposed to be about, well that and tel my story. So, please if you have any questions, please feel free to email me or post a comment. It makes me think more and may help me with some of my memories!

Thanks!

The First Chemo

This is my Grandma and I right before my diagnosis. And my beautiful hair.
I will post more pics of this period of time in my next entry. We can't find our USB cable right now

Before I started chemo, my office went out to a bar. I don't really remember what it was for, but it was really fun. I had made so many new friends and we just had a blast all hanging out and having a good time. I made my peace with the person that I had pissed off when I had sent out my e-vite for the party that I was supposed to have when I had surgery. Before everyone got there, I had dinner with one of my co-workers and it was really nice to have someone to talk to for a bit. We took tons of pictures and I had a ball laughing at everyone as they got more and more inebriated.

My mom decided to go with me to chemo. I was terrified. I had seen movies where people leave and immediately started vomiting, and I was scared that was going to happen to me. I had a terrible fear of throwing up, especially throwing up in public. I also was scared of needles. I couldn't imagine having an IV hooked up to me for several hours. I was also scared of the unknown – what was going to happen once the chemo started? Would I feel different, would I even notice? Would I feel it actually go in? All these questions plagued my mind.

Around 11 am, we got to the office. We sat in the waiting room for a while, again. Things seemed very disorganized and slow. It seemed like forever before we finally got to go back. The nurse weighed me, and took some blood. She led me back to the infusion room. The room itself was small. There were cabinets and a sink at one end and an exam table at the other end. In between, there were two recliners, a pink one and a black one, across from each other and a stool and a folding chair. I could see that the black recliner was the coveted one. There was a small TV/VCR by the door.

There was only one chair available, and it was the pink recliner. The rest of the chairs were taken up by people, most of them in blankets, who were in various stages of receiving their chemo. The exam table was occupied by a Vietnamese man and his daughter. I later learned that he was a single parent, receiving chemo and there was no one to take care of his daughter. Once I sat down, I was prepped for an IV line. The nurse gave me a bag of saline and it had begun. My mom had pulled in a folding chair from outside and sat down next to me. She had read somewhere that the chemo makes a bad taste in your mouth, so she had brought some hard candy with her. So we had one of those and sat back to survey our surroundings.

Dr. Sapra ran in around noon and turned the TV on to the stock channel and pushed a VHS tape in. And then he ran back out again. Soon, we noticed that my saline bag was running low. I called the nurse in. I was terribly afraid of the bag running out and then air getting into my veins. She turned the IV off and prepared another bag for me. This one was the beginning of chemo. I didn't really feel different, just a little anxious. The needle was uncomfortable and I was very careful not to move m arm. In return, my arm was very cold.

We talked a little bit to the people sitting around us. The Vietnamese man promised me that he would teach me his language. Everyone else seemed kind of out of it, or just not really wanting to talk. I started to get tired and encouraged mom to go take a walk or get something to eat. I just wanted to rest. Pretty soon, the nurse came back in and had a needle with a very large syringe attached to it. It was filled with a bright red liquid, like Cherry Kool-Aide. Slowly, she filled my line with this fluid. It was ice cold. I could feel it going in, and it wasn't very pleasant. Once she was done with that, she gave me a new bag of clear fluid. I didn't look to see what was in these bags, I just accepted it. Within a few hours, I was done. Once I was finished, I was pretty much the only person left in the room. The nurse removed my line, and gave me some basic instructions: Don't take aspirin, ibuprofen, pretty much anything without consulting Dr. Sapra first. Call if I get a fever above 99 degrees. Stuff like that. We got plenty of paperwork on the side effects and things to avoid. It was pretty scary.

We finished up with the instructions and went on our way. Mom took me to the salon to have my hair cut. The lady that was going to cut my hair was a gardening customer of my dad's. She was nice, I guess, but kind of standoffish. I had gone to school with her sons and daughter. This may have scared her a bit. We explained that I wanted to save my hair and she looked at us as if we were nuts. But, she cut my hair. Short. I looked down when she was done and saw all of my beautiful thick, long hair spread all over the floor. I guess she wasn't sure what to do with the hair that we wanted to save, so she just swept it up and put it into a bag for me to take home.

By the time we had finished that, I was famished. We went home and it was all I could do not to eat everything in the fridge. My dad laughed and decided that they put THC in my chemo. So far, I hadn't felt too different, no nausea, no pukes, nothing like that. I was hungry. That was probably all. I supposed that was a good thing. I had several calls from friends to find out how I was and how I was doing. I told them all that I was fine. I had trouble sitting still, I was very energetic and almost twitchy. I had a lot of trouble sleeping that night. My parents were surprised that my face was bright pink after I arrived home.

I tried to drink a lot of water, because I was told that it would help me flush all the drugs out of my system. It was also supposed to be the cure all for headaches. And I seemed to get a whopper of one. I don't know what I thought would happen, but I really didn't feel that different. There were some little things, the hunger, the headache, but nothing like I originally expected. That was good, right?