Friday, January 14, 2011

Holding Back

The other night, I was watching My Sister's Keeper with my husband. About 15 minutes into the movie, I started crying. As the next 30 minutes, my crying got worse and worse, until my husband had to turn it off and hold me while I sobbed into his chest. Yes, the movie is sad. It has sad content... It's about a family that is dealing with their oldest daughter having Leukemia, and their youngest daughter was constructed and born to be the donor for her older sister. The younger wants medical emancipation - the ability to make her own decisions about letting them take parts from her body, etc. The story is basically about the turmoil that happens once the suit is filed against the parents. It also includes many flashbacks of the illness of the older girl.

I don't know exactly what made me start crying. The book, which I read months ago, didn't have this effect on me. But once I started, I just couldn't stop. I ended up having nightmares that night that were so disturbing that my husband had to wake me up because I was crying and hitting him in my sleep. I vaguely remember the dreams, but I have no idea why I was hitting him.

I thought about it the next day. There were several things that struck me in this movie. The girl with cancer refused to get out of bed one day. She was depressed, she said. She was ugly. And everyone stared at her. I think this is the point that made me cry. The more I thought about it, the more I think I was catching up with the crying that I didn't do when I was sick.

I understand how this little girl felt, even though I was not young when it happened to me, the cancer that I had was not incurable or even unfixable. But, I had my moments when it was everything I could do NOT to lock myself in a room and sob myself to sleep. I really didn't feel that I had that option. I felt, for many reasons, that I needed to put on a brave face, both for my family and for my friends. I was not going to be "the face of cancer." I was not going to be weak, and bedridden. I was not going to be sick. I was going to laugh and enjoy life like I was doing before I was diagnosed.

I felt I expected to be in good cheer, and happy all the time. So, I did what was expected of me. I would go out, I would go to the place I worked and I would visit people and "be happy." I cried maybe twice. But usually it had nothing to do with being sick. I had a fight with a friend, or one with my dad. Some teenage girls made fun of the way I looked, and I was so upset, but I never cried about that. Most of the time, I kept my thoughts to myself. I was lucky in that first round, though. It seemed that I had a million friends. People seemed so happy to see me, I got cards from work almost every week. The one time I was hospitalized, my room was never empty. It was almost like people were vying for my attention.

After I started getting better, suddenly no one wanted to talk to me. People were cruel behind my back. Friends started dropping like flies. I went back to work and was treated somewhat unfairly. At the same time, my father found out he was dying of lung cancer. I truly felt I had no one to talk to. I couldn't go home and voice my fears or my sadness. Again, I had to remain upbeat, because we didn't want to upset my dad. And I didn't want to upset my mom, either. She had enough to deal with. When my dad died, I got apologies about the treatment I had received. Some people came back to be my friend, others never came around. But again, I never got to truly grieve in my own way. No one ever asked me how I was doing. My friends were more worried about my mom (and rightfully so), and so was I. I had to take care of her the first couple of months, our roles had become reversed. I made that promise to my dad.

Within two years of my dad's passing, I was diagnosed again with Hodgkin's Lymphoma. This time was different. The chemo that they gave me obviously didn't work the first time, and my body had already received the maximum amounts of those drugs in my system. they had to try something different. The day after I was diagnosed, I was formally let go from my job. I wasn't even given a chance to say goodbye. My car - that I picked out with my dad - died, so with the inheritance that I had, I had to buy a new one. I felt like my life was falling apart. Things had finally been going right. I cried about silly things. But never really faced the big picture.

The new treatment I was on required me to be in the hospital for 6 days at a time, every three weeks. So, I was alone. My mom tried to visit as often as she could, but she was still working. Friends stopped by once in a while, but I don't know if it was hard for them, or they just couldn't come by. I had one friend that came by, but as soon as she got there, her husband called and demanded that she come home. It broke my heart. I was in about my third treatment, when I realized something was wrong. I didn't feel right, and my head hurt. I was suddenly vomiting all over the place, which was something that didn't happen before that. The nurses had been treating me like a child, trying to help me use the restroom, and teasing me about things that rather annoyed me. But when I passed out and was scared and vomiting, they wouldn't come. A doctor came and signed my release papers without even looking at me. I went home. I looked awful.

Well, there is cancer awful, and there is this awful. This awful was when I went home that night and had no idea who I was when I looked in the mirror. My head faded into my chest and shoulders. I could barely move, and it caused so much pain just to do that. I finally had to go to bed. I couldn't sleep. My head just hurt so bad. I sat up in bed and called out to my mom. I told her it was time to call the ambulance. I tried to stand up, fell on the floor, narrowly missing the bottom of my dresser, and vomited. I was somehow in the state of mind to remember to turn my head so I didn't choke, and also to remind my mom that she needed to open the gate. I really only remember being lifted over the stairway, and then trying to pee while hoisted up on a gurney. The next few days were a blur.

I was terrified. I was alone, the doctors and nurses weren't nice to me. They put me in positions for extended periods of time where I had trouble breathing. They had me covered in suction cups to monitor my vitals, and every time I'd move, it would set off alarms. I am a side sleeper, and I had to stay perfectly still on my back. I was warned not to move. When they did an ultrasound on my chest area, they found that I had a myocardial infarction - heart attack. There were blood clots all between my wrists. It was caused by a staph infection at the site of my Hickman Catheter (chest tube). So my catheter had to be removed. Oh, and I had a sinus infection. That was why my head hurt. They told me that if I moved too much, one of the blood clots could break free and kill me. Yeah, I wasn't scared. At all.

After everything was said and done and I was in the ICU, people tried to visit. Ok, just two. My grandma flew down to help my mom. My best friend's Kevin and Heidi both came in. Two of my former coworkers tried to visit, but I was unable to accept any more visitors. My coworkers had dropped off a video tape for me. It was many of my old coworkers telling me to get well. A few of them were crying. I couldn't watch the whole thing the first time around because I would start crying and it was dangerous for me to get too emotional. I had to wait and watch it when I was a little bit more functional.

When I finally got moved into a regular ward after the ICU, the nurse I had the first night told me that I could very easily die in my sleep. Or something like that. Upon being released from the hospital a week or two later, this nurse tried to hug me. I vomited on her. This was a glimpse of happiness for me. After I returned home, strange things affected me. Too much noise made me sick. Sudden laughter or crying made me sick. My antibiotic made me sick every time I had to take it. My mom was gone once a week for three weeks, because she wanted to take a class on computers so she would get a free laptop for me. Grandma was around for a while, but had to go home. I was told not to come into work to visit, because it might upset my former co-workers. I couldn't drive myself anywhere because I was confined to a wheel chair. I went to visit another friend and he could barely even look at me. I was told that I was bad for business. Another friend took advantage of me while I was sick and vulnerable. I had very few visits from friends.

Around November, I got some happier news. I had been approved for Italian Greyhound Rescue Adoption. They found a dog that would suit me perfectly. I went to meet him and he loved me. I was unable to pick him up until after I finished my treatment, so they agreed to take care of him.

I finally had come to the bad place in my treatment. I was shipped off to Beverly Hills and Cedar's Sinai Hospital Cancer Center for a stem cell transplant. This may have been the hardest time for me. I was in what was called reverse isolation. Which is basically isolation without people having to wear clean suits. My mom tried to visit as often as she could. But it was over a 2 hour drive. I was there for about a month and a half. Mom was able to bring friends of mine with her a couple of times. My aunt and uncle visited once, but I was feeling so horrible, I could barely pay attention to them. I was lonely and wanted people around, but I didn't because I felt so awful. I had the laptop, so I was able to get some emails once in a while, but mostly I just slept and bought things with my debit card online.

Most of the nursing staff was very nice. And of course, being who I am, I endlessly polite, smiling and non-complaining, unless it was really bad. Then I would just ask for medication. It was loud at night (who actually can sleep in a hospital?), and one night i had to have a blood transfusion. The rule is: two nurses must come in to change the blood bags - one to read off the number and check the blood type - the second to verify that it's correct. One man came in, by himself and changed the bag. I reported him the next day. I worried all night that I would die or have an allergic reaction. Cedar's is a learning hospital, so often, I was pulled out of bed by doctors that were teaching so they could do strange examinations on me. I had a very hard time concentrating on the things they had me do. Then there was the nurse outbreak of chicken pox. Every person in the ward had to have a shot so they wouldn't get that or shingles. I was examined every day by a resident nurse, including between my butt cheeks. I had to have my "output" measured every day. And, as I wasn't expecting this to happen, my period started while I was there, and I had nothing. And none of the nurses would get anything for me. So I just bled for two days until my mom could get up there and bring me something. The whole experience was very humiliating, but I smiled through it all.

When it finally came down to having my stem cell transplant, I was given a Benadryl, and told to sit back, but let the nurse know if it started to hurt. My nurse had to stay in there with me for the entire time, to make sure everything flowed smoothly, and I guess to make sure I didn't have an allergic reaction or die. It was not comfortable. It wasn't painful, but it made me feel like I needed to get out of my skin. I wanted to sleep while it was happening, but I didn't want to bore that nurse, so I tried to stay awake and talk to her and be cheerful. I figured I could sleep when she left. I was fairly sick and weak, understandably, for the next couple of days. Within a couple of weeks, my white count was up enough and I was strong enough to leave the hospital and go home.

On the way home, my mom told me a friend needed to talk to me about something important. I called her and found out that her boyfriend died, suddenly, and in her arms. She was broken-hearted. And I was for her. I tried my best to comfort her, but I don't know how effective it was.

I got to pick up my new dog, and go home.

This time is a long time to hold back tears. Tears of anger, tears of fear, tears of loneliness and tears of sadness. I put on as much of a brave face as I could. Partly because it was encouraged - "It's all about attitude" "You have such a great sense of humor" and "What an amazing attitude you have." It was hard to be myself. It was impossible to show how I really felt. I was extremely hard on myself, and I still am, about that period of time. It felt so much, the second time around, like people I had never met, cared more about me than my friends did. It was like I lost my support system once my dad died. it killed me inside to think about these people that I saw all the time when I was well, that wouldn't even hardly talk to me when I wasn't. And if they saw me, they'd shoo me away. I don't know if this is a good reason for me to cry so hard and so long at a movie, or why I may feel resentment toward people that have been nasty to me for no apparent reason. But it's happening. And I can't control it. Not anymore.

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