Saturday, February 11, 2006

coming to terms with my pain

On Wednesday night (day+6), I had a nervous breakdown or total meltdown in my room. I haven't had the opportunity to describe it until now due to my great need to reflect and to take the time needed to tackle the concerns that fostered it in the very first place. It also took me a significant amount of time to compose this very post. It was scary . . . real scary. In fact, I'd say that without a doubt it was the most terrifying moment of my life. I never felt so "out of the element" as I did during those horrifying fifteen minutes or so. It was the product of a mix of emotions and concerns - some obvious and present but others suppressed and unrealized. Some had roots in my experience as a patient here and now, whereas others go back to my original diagnosis in 2003.

During much of the past two weeks, I have had a steady stream of visitors and phone calls. One might be surprised to learn that the very first six days when I was receiving the high-dose chemotherapy weren't the most difficult. For the most part, I was able to tolerate the initial side-effects of the chemotherapy well and as a result, I was able to receive the many visitors and phone calls with ease and happiness. (I threw up twice and had a bit of irregular nausea but from what I have heard from some of the nurses and other BMT patients, I did remarkably well in this department). The company, food, and other generous items were most welcomed and as I have expressed in earlier posts, I have been most struck and humbled by the out pouring of support from so many, strangers and friends alike. The saying that one doesn't know how much he or she is loved until they are sick is true. You do realize who's there for you when you're mired, battling it out in the trenches and on the flipside, who's not.

On day 0, transplant day, my strength and energy started to really dive. I was so wiped out that day that I never left my bed except to go to the bathroom. I remember feeling considerably better the following day, but thereafter I felt more fatigued progressively. The headaches started and these hit me like a ton of bricks. These alone made the next days most frustrating and difficult. It took so much more effort to concentrate with the headaches on the most brain numbing activities like vegging in front of the television. But as I stated in the past, even this was too much and many times I preferred the tv off. The fevers started soon after and this added to my problems.

I had several visitors throughout the day on Wednesday and by the mid-afternoon, the phone calls started. With very little pause in between, the calls came - one after another. And this took a lot of mental energy out of me. I emphasize the mental strain because it took so much effort to concentrate on conversation at a time when my brain needed more than anything just boring quietness. In fact, I'm sure that the recurrent headaches that I had been suffering from worsened or were initated in part by the strain that resulted from the overstimulation that my brain endured. I remember well how I'd sweat and even become nauseous at times by the strenous conversation. By Wednesday night at around 9 (I don't remember the exact time) I had finished the last of about 4 telephone calls (all right after the other with little or no break in between) and as you can surmise, I was exhausted. I sat in the loveseat exhausted and realized that the day was basically over and I hadn't done really anything that I had hoped to do that day. The day's New York Times remained unopened in the same blue bag on the window ledge since the morning. I didn't find the time to even touch and open the bag, let alone read an article or two in the paper. It hit me that my day was gone having been occupied mostly by calls, visitors, and medical staff but where was I in this big picture. Nowhere I felt.

I was, however, aware equally of the fact that no one meant me any harm. Everything was done with the best intentions. The visits and calls were all made out of a sincere interest to help and encourage me as I undergo the difficulties of the transplant. The medical staff must come into my room and do their job. It's for my benefit. This is just the reality of the situation, which I understand. Everyone wants to see me emerge triumphantly and recover quickly, so that I can reclaim my life back from the clutches of cancer. Everyone wants this prizefighter to win. I know this and am forever both humbled and grateful by the boundless kindness that I have been shown.

After the fourth phone call, I called my mom to vent. Giving her a litany of complaints, I told her about how the day had unfolded and that I at the moment felt stuffed, squeezed from all sides. She tried to calm me. I don't remember exactly how our conversation continued immediately thereafter but she said or asked me something about which I snapped and then sunk in a whirlpool of hysteria. Listening to my mom with the telephone in my right hand, I then slide from the loveseat to the floor immediately below it crying and moaning hysterically. Pressing my back against the base of the loveseat, I grabbed the pillow from the loveseat cushion above me and squeezing it fiercely with my left hand, I held it tightly to my chest. I screamed and moaned and cried frantically with my mom on the end of the telephone in my right hand and the pillow held tightly in my left hand and pressed against my chest. At times, I bit the pillow moaning with despair. My mother pleaded to me asking me to calm down. My only defense at that moment as I lay on the floor rolling in front of the loveseat with my IV pole standing motionless above me was that pillow and the assurance of my mother.

I had had a breakdown. I had fallen suddenly and unexpectedly into the dark, frightening depths of a cavern about which I had never imagined possible. Talk about low. This was it. As I rolled and rolled on the floor with the pillow pressed suffocatingly tight against me, I screamed hysterically at my mom about my feelings of suffocation and entrapment. Between the visitors, phone calls, and medical staff, it dawned upon me with terror that I really hadn't had any time for myself during this entire process. I needed some Duane time. My time! Time just to be alone with my thoughts and myself. Time for my body to rest and for my brain to not feel compelled to entertain. I had felt robbed, cheated. More importantly, I had felt that my body - the very source and reason for me undergoing the transplant - had been undermined during the past week.

You see, I have my own conception of personal healing and what I need to do to aid this most important process. To me my body and mind make up a team, a union whose bond is so vital to the success of the workings of the high-dose chemotherapy and the autologous stem cell transplant. I reasoned that if my mind and body weren't on the same page - rested and
relaxed - that the combined healing forces of my body and mind would be undercut and therefore, weakened. I couldn't rely on the chemotherapy alone to heal me. It's the chemotherapy in conjunction with the natural healing processes of my body that would cure me and so it was the state of this most important partnership that I was worried out of my brains about. By having too many visitors had I undercut this partnership? By receiving too many phone calls had I irreversibly damaged the work of this partnership? I was never able to have a sound sleep because of interruptions throughout the night. I would wake up 4-5 times during the night to urinate or be awoken by the nurses' wanting to check my vitals or change the bag of IV fluids. Therefore, night, the natural period for rest, was not so but something else entirely. I couldn't think about getting a sound sleep at night especially during the period when I had those pounding headaches and upsetting fevers. The daytime, I felt, was the only time in which I had any opportunity to chill out and when I was feeling lousily, even this time wasn't sacred and it was made only more difficult by the steady stream of visitors and phone calls.

So the anger of my cries and moans was rooted in my feeling of victimization and loss of control, whereas the horror and hysteria of my yells was rooted in my overwhelming fear that because I didn't believe my body and mind had rested properly that ultimately the transplant would not succeed and that the Hodgkin's Disease would return for a third time. It was this thought more than anything that fueled the hysteria that I experienced as I rolled on the floor crying and moaning to my mother. I had never felt so frightened and helpless as I did as I realized the gravity of what this meant. I told my mom emphatically that my body had suffered so, so much during the past two weeks and that it, a sentient being, was hurting. Unknowingly, I too was hurting a lot inside. I basically told my mom that I'd rather go to hell than repeat this process again. It had been too awful to bear.

Witnessing the changes that my body had undergone during these past two weeks has fostered in me a renewed love for my body that I had never felt. Looking at myself in the mirror as I do every morning, I realized that despite the marks and wounds, it was the only body that I have. Indeed, it is the only body that I'll ever have. Yes, it's battered but it's mine. And with this stark realization came a profound sense of responsibility to protect it, which is why in part I felt so defensive as I cried on the floor. I was entrusted with a solemn duty to guard my health - the well-being of my body - and I feared that I had failed. Moreover, I felt that this was my only chance and I worried that I had missed it. I loved my body too much to witness it suffer like this again.

That morning I had looked at myself naked in the mirror before I stepped below the shower. What did I see? Pain. Suffering. Lots of it. Wounds and bruises. Black lines and blotches on my skin. Band-Aids and patches. Peripheral IV lines. No hair on my groin. No hair on my head. A rash. The inside of a purple and blue colored mouth. I think that the grotesqueness of these images - the once beautiful body of a 25 year old now battered and abused - struck me like a sword as I cried on the floor that night. I wasn't aware of how much I had really been hurting emotionally inside. I had cried in front of my folks at the dining table once several months ago and since then, silently only a couple of times. Otherwise, I had been pretty well-composed and collected. I suppose that the feelings of pain, frustration, and uncertainity that I had been bearing unknowingly for months and months came out finally and unexpectedly Wednesday night.

My breakdown was based upon a variety of concerns and frustrations, both past and present. It was, however, my worries about the endless visitors and phone calls that was the catalyst. It was this issue that ignited my scary dive that night and my other concerns and fears arose to light in its wake.

After repeated attempts to calm me down, my mom told me to hang up as she called the nurses' station for assistance. I had stopped rolling on the floor by this time and instead was sitting motionlessly on the floor leaning my back against the base of the loveseat. I continued to hold the pillow tightly to my chest although by now I pressed it against myself with both arms. I waited anxiously for Aion, my night nurse, to walk in my room but she didn't come immediately. During the few minutes I waited on the floor, I began to relax a bit telling myself what a scary moment that was. This must be how visits to the looney pin are started, I joked to myself. After a couple of minutes, Aion walked in and asked me how I was. It was clear that I was distressed. She said my mom was very worried about me. I don't remember what I said to her but I recall she making me laugh a bit and this remedy of laughter lightened the thickness of the atmosphere at the moment. She told me that most BMT patients have a breakdown at some point, whether it's while they're receiving their transplant in the hospital or when back at home. I wasn't alone. After I assured her that I was feeling a little better, she left to contact the on-call doctor, who Aion said could prescribe something to help me go to sleep since I was so wired. My mother and I spoke again and I told her what had just happened and that at the moment I was waiting for the doctor to come. She volunteered to come down to the hospital, but I reassured her that I was okay and just needed to sleep.

After cleaning up the mess that I had created in front of the loveseat, I prepared methodically for bed. As I lay under the covers with the lights on, Dr. Green, a very warm and sharp middle-aged woman came in and introduced herself. She pulled up a chair beside my bed and sat down giving off a very strong yet inviting presence. Having noticed that I was wearing a Vassar shirt, she asked me if attended Vassar. I replied yes - Class of 2002. She responded, "Class of 1986." I found this commonality to be comforting. We talked about Vassar briefly, conversing about the different dorms we lived in during our careers there. Then, we got to the nuts and bolts of why she was in my room. I repeated everything that I described above. Dr. Green expressed her understanding of my concerns and views with comforting nods and okays throughout my narration. At the end of my narration, she told me that control seems to be the issue and we, then, discussed briefly ways to improve my control of the situation. I told her too of my interest in exploring psychiatric counseling, which she thought was wonderful. Unfortunately, she said there's a stigma attached to psychiatry but it's in fact something that many people could benefit from. Several people had told me about counseling in the past and with all that I was undergoing, it was something that could be of great benefit to me. After my breakdown that night, I decided that psychiatric counseling was indeed something that I should investigate.

Dr. Green visited me again the following evening and she was pleased to see that I was doing much better and that I made efforts during the day to take more control of my life. Still worried that my transplant had in some way been undermined and thus, my long-term health, I asked her if there was any validity to my concern. She looked directly at me and told me that I should drop that worry for that wasn't something to worry about. I asked the same question to Dr. Javier and he reiterated the same response. Dr. Green, by the way, didn't prescribe any medicine for me the previous night. I was able to fall asleep without a problem.

Last night, I met with Dr. Freyberg, a resident in psychiatry. Although I'm very bad at guessing ages, I'd say he's maybe 30. He is very slim and both light-hearted and affable. I retold him everything that happened on Wednesday night and he asked me questions about my past. Like Dr. Green, he agreed that control was the paramount issue here and so, he asked me about past experiences in which control was a similar concern. After a little reflection, I of course remembered about my first diagnosis in 2003 and how after learning about the presence of the tumor from my pulmonary doctor, my mom shared the diagnosis with two relatives upon returning home from the doctor's office without asking me first. (For her, she had to grieve and let the weight of the awful news off her chest by sharing it with two of her closest relatives. I understand this need. As my mother, she was hurting too by the news, but I still felt that what she did was wrong and that she should have asked for my permission first). I felt violated totally by her action, because in my mind after learning about the diagnosis the only sense of control that remained was my control over the knowledge of my diagnosis and its dissemination. But with my mom telling others, even this last sacred right had been snatched from me. I surely didn't have control over my body. The cancer showed me that. So, what did I have control over now?

He asked me about past experiences of fear similar to that experienced Wednesday night. I told him that I had never felt as fearful as I did that night. Never. The gravity of my fall Wednesday night became apparent to me, I told him, afterwards when I reflected over it and spoke to others, such as Dr. Green, about the experience. It was as if I was being pulled up slowly from the depths of a vast, bottomless cavern and as I ascended, I looked down and realized how far I had fallen. It was a frightening realization. Although maybe some good came from my meltdown. I had no clue that the transplant would be this difficult. Absolutely no idea. How could I? Despite all the books that I had read, there was nothing to prepare me for it like experience. Now, however, I'm more aware and sensitive to the blunt reality of the experience that I have had and the challenges that I will face in the weeks and months to come.

Dr. Freyberg said that I had endured a lot indeed during my stay in the hospital and it was understandable and therefore, encouraged to find a medium whereby I can discuss my experiences. Dr. Green had told me the same thing. He agreed to see me again on Monday.


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