The Social Life of a Cancer Patient

No matter what was going on with my treatment, I tried to get out. I tried to have the social life of a 26/27 year old. I didn’t drink, (I am pretty sure) I looked horrible, and sometimes, I had trouble keeping up with everyone. But I needed the interaction with more than my parents and doctors. I was determined to go through all the treatments and appointments alone, but I needed something to do in my evenings to keep my mind active and keep a positive attitude.


Even though I wasn’t working I would often have lunch with my co-workers, who treated it like a party almost every time I stepped in the door. On Fridays, I would drive down there a little before noon and then wander around the office for a bit and say hi to everyone while I was waiting for lunch. It was so nice for me to go around and visit. I got hugs, and all my coworkers would talk to me about how I felt. Once in a while, one of the girls that I worked with would tell me that she knew how I felt because she had some sort of flu. We would all laugh about that later, because she really had no idea as to how I felt. 

The Fancy Lunch Crew

My co-workers were so supportive, that even when I wasn’t able to make it down there. Because of my immunities and the fear of catching a cold or something that may be circling the office, or because I was just too sick to drive, they always made sure that I knew they loved me. I would often get a card with get-well wishes, usually on days that I would need it the most. This group of people was amazing. They always just seemed to know. I would get tons of emails. I started running a trivia question of the day via email, and it was so fun to get the funny answers that I would get. It was really uplifting.

My parents threw a get well party for all my friends to attend, and I think to meet them, and know what we were dealing with. My parents fell in love with the ones who came, and I just loved them all a little more. We had a barbecue, and there were few people there, but it was so nice just to hang out with everyone in the comfort of my own home. 


Friends and I would go out, sometimes to bars. We had a favorite one downtown, right by the pier, that had a great cover band.  We would sit outside and I would laugh at them while they got drunk and acted silly. 


One of my favorite times when I went out with my friends, was when a bunch of us went out to this storefront karaoke studio in Fountain Valley (It was called Elvis!? Karaoke Studios).  I love to sing. And I love Karaoke. It had studio rooms, and you could record yourself singing. There were around 7 of us, and we went in and were told “No Drinky,” because they wanted you to buy drinks from them, and not bring in your own. To this day, it’s a huge joke with a couple of us. We were there for a couple of hours, singing away. We sang quite a mix of songs. We had a funny time, as replayed by the tape we made that night. 


My dad had known that I was having trouble with nausea, so earlier in the day, he tried an experiment. Dad made me pot brownies. I had one about a half an hour before we left to go to the karaoke place. It didn’t help much with the nausea, but it made me giggle a lot. By the time we got to karaoke, I couldn’t feel my legs, so I had to be helped. The brownie effect was referenced in several songs that we sang that night. It also loosened me up to where I was no longer shy to sing in front of other people. Apparently, I have a good voice. And judging from the conversations of the night, I was very well loved.  

My parents were really good about letting people visit, too. On chemo days, I often didn’t want to leave the house after I got home. Sometimes when I was feeling down, my parents would call or email one of my friends and they would come over in the evening and visit. My old upstairs neighbor, Dawn came over once in a while with my friend Linda. Linda would entertain me and often bring me animal books to read, while Dawn hung out and teased my dad. Kim would come over every night to give me my Neupogen shot and try to visit for a bit until her husband started thinking that she was having an affair and demanded that she come straight home after work every night. And Sweet Elizabeth who tried to bring her cute little dog, Teddy, over as often as she could. Even one of my best friends, Damon came all the way from Sacramento with his daughter and step-son. It was wonderful to meet them both, and to see him.

Damon, the kids and Me

Friends also offered to go to chemo with me. It was very nice of them, but I only allowed it twice. I always felt that if anyone was visiting or was with me, I needed to be entertaining. It was so time consuming and tiring, it was hard for me to be able to even talk for that amount of time. Elizabeth went with me to my second one, and Linda went with me to my last one. I loved that they cared enough to go with me, and that they took me out afterward, but it was so hard to remain interesting.

I met a few people in chemo that were actually my age. Rachel was a year or two older than me, I think. And Michael - the cute boy from the Gallium scan - who WAS someone I went to high school with. They ended up dating for a period of time, and we often saw each other with our corresponding check ups and chemos - mostly just in passing, but once in a while we’d talk.

On the day that it was Rachel’s last chemo, so I stopped by to celebrate with her. While she was waiting to go in, we started talking about an ER episode that was on the night before. It was one where two of the doctors were dealing with a man that was on the attack around the hospital. He ended up stabbing one of the main doctors and an intern. He killed the intern. It was a really shocking episode. While we were talking about it, Dr. Sapra peeked his head into the waiting room and just blurted out “Shit like that happens!” And then just disappeared again. We could NOT stop laughing. It was so out of character for him. I mentioned it to him and he said to me, “well, it DOES!”

I lived for all the visits, cards, nights out, lunches, dinners and humor that I got from every single person. Those people (and they know who they are) will forever live in my heart for the wonderful things that they did when I was sick. They were what kept me going. Of all the things I take from this illness, I will take their love and friendship most of all.

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.

All Apologies

I'm sorry I haven't been updating lately, there has been some stuff going on that I needed to concentrate on and I haven't been too inspired to write, and I haven't had much time, either.

Please bear with me, and I will update soon. Thanks.

The Hospital Visit

This is the hospital I stayed at. It has changed a lot since then.

At work, I was having a little trouble concentrating and remembering everything that I was supposed to do. Normally, I was very organized and on top of things. My calender was constantly updated and I had reminders all day long of things that I was supposed to do. I guess I kept missing things, and a co-worker decided to tell my manager. My manager proceeded to come to my desk in the middle of the office and yell at me for not doing my job properly. I was understandably stressed out by this and struggled not to cry. My coworkers were shocked at this behavior by my manager, and tried to console me while doing their own jobs. I went home that night and complained to my parents. I wasn't feeling well, so I went to bed pretty early.

The next morning, I still wasn't feeling well. I had a bad headache, and when my mom came in to take my temp, I was running around 100. I was still determined to go to work, but I just couldn't get the energy to get out of bed. My mom panicked, and decided she was taking me to the hospital. She packed me all up in the truck and drove me to the ER. I slept most of the way there, and I really don't remember much about being admitted, just that I kind of “came around” when I was in a bed. I was hooked up to machines, and my mom was next to the bed half asleep, holding my hand.

When I was awake, I realized I had an IV drip of saline, and an oxygen monitor hooked up to my finger. I also had a blood pressure cuff that was on my arm, and was pumped up automatically every few minutes. It was really uncomfortable. Everything in the ER was blue: the curtains, the walls, the chairs, even the scrubs that nurses were wearing. I signaled to my mom that I was up, and told her I needed to call in to work. She said she had left a message with Maryanne's voice mail. I said that I still needed to talk to someone, just in case Maryanne wasn't in. So, they brought me a phone. I called and talked to Maryanne. At the point when my mom called, she would have been the only one there, since it was before 7. Now, it was after 10, and Maryanne had gotten my mom's message and had passed it on to my manager. She was terribly worried and let me know that everyone at work was thinking about me and were also worried.

I was running a low-grade fever and was dehydrated. They decided to admit me into the hospital for a couple of days. I was put on a gurney, and the cutest orderlies (do they still call them that?) wheeled me into an elevator and took me up to the women's ward of the hospital. There was not enough cancer patients for the hospital to justify having a chemo ward, so they put me in the next best thing. I got a private room, and a really nice nurse. She introduced herself and wrote her name, my room number, and the hospital phone number on a dry erase board, along with her pager number. I was feeling a little better, but they said I was still dehydrated, my blood pressure was too low, and my temp a little too high.

Soon, my oncologist, Dr. Sapra, came by to see me. He asked me lots of questions about the days leading up to all of this. Including – did anything happen to stress me out? I told him what happened at work the day before. He practically yelled at me - “What are you doing, still working???” I laughed and said that my family and I had decided that I should stick it out as long as I could. He stared at me for a minute and told me – no more work. I breathed a sigh of relief. I really didn't want to continue there while I was sick. I had tried so hard to make a good impression and I was screwing it all up with this cancer crap. I didn't want my good impression to turn into a bad one. So, I was ordered to relax and take it easy for a couple of days in the hospital.

I had a steady stream of visitors. Kim came by, and Elizabeth, Kari and Mark, and my parents. I was admitted on a Friday, and ended up being there the whole weekend. My mom had to work during the day on the weekend, so my dad would go pick up lunch and bring it by and hang out with me. Dad and I really didn't hang out a lot, so this was a rare treat. It still brings me to tears just thinking about it. He was so sweet. We watched bad TV, and talked about nothing. It was just nice to not be alone and to have some time with him. My mom would come by after work for a little while, and then she would need to go home to rest up for the next day. People brought me presents, and flowers, and cards. My parents brought by my blankie and my Piglet stuffed animal for comfort. If I hadn't actually felt like crap with a painful needle in my hand, it would have been fun. Except for the TV. I didn't have much to read, well I actually read through everything pretty fast, after my dad picked up a bunch of music magazines for me. So, I tried to watch stuff on TV. There were only about 5 channels and a movie channel. The movie channel had two movies playing on the weekend, so I think I watched Save The Last Dance 7 times. I never EVER want to see that movie again.

The food was surprisingly fabulous. I had filet mignon on Friday night. My dad was very jealous. He bragged to everyone. The breakfasts were pretty good and I think at one point, I even had a Caesar salad.

On Sunday afternoon, I was told that I would be discharged once the doctors filled out my forms. My dad waited with me for a while, but he got bored and asked if someone could pick me up. I called my friend Elizabeth who said she would, and came by at around 7. Finally, at 9:30, I was wheeled down to the door and she drove her car around to get me. She had a get well card and flowers in her front seat for me. She had also brought a very special friend, her Corgi puppy, Teddy. He was brand new and the sweetest thing ever. He cuddled up in my lap and made me feel so wonderful. Elizabeth was so nice to take me home and make sure I got inside.

My dad was still kind of up, and my mom was all ready for bed. She helped me to my room, and tucked me in. I tossed and turned for a while and finally fell asleep. Even though the hospital was nice, and the people were great, there is nothing like the quiet and comfort of your bed at home. And I never did figure out how the hospital pagers worked.

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!

Update and Disclaimer

Thank you for your patience (and your wonderful comments!) in my next blog. At this point is where things start to go hazy or run together for me. I still have a terrible time remembering certain things, and I may get some of my memories a little mixed up. I will update soon. I am still unpacking from my move, and working on finding a job, catching up, etc. So please bear with me, I will update.

Thanks again.