I've been debating with myself over the last couple of days on how to continue this blog. When I was diagnosed a friend sent me a link to a site that was one man's journal about his bout with Head and Neck Cancer: http://www.bdssite.com/scc/sscmain.htm. It was very helpful for me and I was in a mind to do something similar. The problem I'm having is that, after going through part of my own journey, I realized that he had to have left out some of the more painful or negative aspects of it, in an attempt to make it more accessible or at least less scary, I assume in order to be more helpful for others rather than as just a chronicle of his own story.
So what should mine be? A true, sometimes brutally honest chronicle of my trials, or a helpful and uplifting telling to help others in my situation. I think I've come to the decision that, while I like the idea of being uplifting or helpful, I value honesty more and I think that the parts he left out would have helped me more. Don't get me wrong, his journal was very helpful for me and I still refer to it when I want to know more about what's still to come, but I'm the type of person who is comforted by knowing almost too much. I want the spoilers. I don't want surprises. I want to know how good or how bad it will be.
Which brings me to the title of this entry: The Cancer Challenge!
Sounds like a game show or a contest and in some ways it feels like both, but no, I call it the cancer challenge because when anyone talks about what's coming, they don't say, "this is gonna hurt like hell" or "that was the worst thing", they say, "it will be challenging" or "dealing with this next challenge is going to be difficult." Which is all true but is also essentially a softening of reality. While I appreciate the wish to buffer harsh reality, I also feel like I was lied to a little. That might be a little harsh, especially since I'm fully capable of reading between the lines and I know that when people say "challenging", they do indeed mean "tough, painful, hard, scary" all that. I would still like to not have to read through the metaphors and similes and softeners. I want to know the true truth. The really real. I'm sure I'll fall to softening some things myself so I'm not bitter about it, I just want to be clearer and more deliberate in the telling I guess.
I haven't written much of anything of what had happened during the surgery and my time in the hospital and I fear some of the details have been lost. Just reading some of my own previous entries tells me that. I had forgotten some things I had even written down before, so this will be by no means a perfect telling, a concise chronicle. Not this part anyway. I'm a detail oriented writer, but I'm sure my memory has been hazed by time a bit as well as simple bad memory.
We arrived at the hospital at 5:30am. My parents, my daughter and my roommate. Registration was painless and quick, with none of the payment scares I had with the biopsy. I sat in the waiting room maybe 3 minutes before I was called up to get my gown and personal effects bag. Another 5 minutes and I was called into the pre-op room. I believe my mom and my daughter accompanied me this time, but I am not positive. Either way, the process was mercifully quick and scarily fast at the same time. No turning back, as if there ever was a chance of that. I met a similar lineup of nurses, anesthesiologists and helpers as I had at the biopsy. My doctor came in and within a short time I was fitted with compression stockings to prevent blood clots (after donning the requisite hospital gown) and was given an IV. As a presage of problems to come, my doctor is already bitching some nurses out because they have a signed order from him for blood work that he "didn't order". The effects of the drugs are that you tend not to remember a lot of things after that point, but I have a distinct vision of being wheeled down the hall, of being pulled into a room full of people and machines but I can't really place a finite visual image on any of it.
And indeed the next thing I knew I was done and in ICU. I later was told the surgery, which was scheduled for about 7 hours, actually only took about 5. I don't know if that's a good thing or not. I choose to think it was.
Post Op. Day 1
That first day is a blur. I remember people I know visiting me but I can't tell who they were. Some are obvious. My parents and my kid and my roommate, Kevin , for sure, I know my daughter's friend Alix came by as well as a co-worker or two, but I can't think of who specifically. I remember being in pain but not as much as I thought I would be. I do know that I pushed that nurse button for meds on a few occasions. I remember that my first ICU nurse was Jolly, a woman with a kind face and thick Southeast Asian accent. I do know my mother slept in the room with me that night. I don't remember who the night nurse was, but I think her name was Sarah. Nicer than Jolly, but not necessarily gentler. I remember thinking she wouldn't bump my bed or my tubes and wires so much if her rear end weren't so damn big. There were hoses and wires and plugs coming from seemingly every spot on my body. I was attached to an IV dripping saline and where I received morphine every couple of hours as well as an artery tap to pull blood for testing. I had EKG patches plugged to my chest, an O2 sensor on my left index finger, a feeding tube in my abdomen and a tracheotomy tube in my neck. There were major staples in my chest and stitches in my neck, chin and mouth. Sensors beep and boop and do their best to keep me even more awake than the pain. I am aware that I can control some of the alarms going off by taking deeper breaths, or not, or changing positions slightly.
I was hot, cold, sleepy, dizzy, all the things I suppose you would expect, but I wasn't afraid or anything, just glad I was still around. I cannot sleep much at all and the hours drag on in uncomfortable misery, yet still not as bad as I had feared. I do distinctly remember thinking it wasn't worth it though. That I understood why my roommate was mad that they had saved his life after a drunk driver had taken it.
I am reduced to writing everything on a small pad of paper, which is infinitely more frustrating than one would think.
Post Op. Day 2
Jolly is still my ICU nurse. I push that button every time the pain mounts too high and I am rewarded with a Pavlovian dose of morphine. The sensors on my chest beep incessantly, warning me of too-shallow breathing, of interrupted O2 sensors, of things I felt were more dire but had no way of knowing their meaning. More visitors from work and family friends. Alix's parents, my newish friend Amber, my roommate's son Cody. I can smile and write things to them but I still can't talk and it's frustrating for me as well as disheartening to my visitors, who can't do much beyond tell me I look great and ask how I am, only to get a thumb's up or a 50/50 waver of my palm.
My night nurse is Amy. Also nicer than Jolly but not gentler. In some ways she was less gentle but easier to talk to and ask help from. I hesitate to say 'more considerate' because after the entire ordeal I realize my perceptions on this count are a bit bent. I get the impression that these nurses choose ICU because their patients are essentially out of it and unable to complain or protest or plead.
Post Op. Day 3
Sleep is still a lost cause. I think I average an hour at a time with a total of about 4 hours sleep every 24. Hard to tell really though. Jolly is still my day nurse, and we're slowly becoming enemies. I am acutely aware that it is a cultural/communication issue in some ways. She is not being mean, but I feel like she is less than sympathetic. Hoses and tubes are pulled without much concern as to what they're attached to or how the yanking affects me. Gowns are tugged, catching on my drain pumps, which are the more painful of the many things stuck to me. IVs are injected into me at speeds more swift than is comfortable. Food is pushed though my PEG tube into my stomach at speeds that make me nauseous, which prompts me to try and explain why I am uncomfortable with each of these, in writing, which is received most often incorrectly. I think I wrote "mean, lazy, bitch" at one point and showed it to my mother. Too much water in my feeding tube to make feeding quicker, yet makes me nauseous. Meds pushed in too fast, causing pain at the point of injection. I am told Morphine makes my breathing too shallow and that I need less dosage, which makes me anxious because the pain is an 8 out of 10 at times and less meds is definitely not an option. Yet less meds is what I am getting. Each note I write to Jolly is half-read and her assumptions lead to more presumptions and I am getting angrier with her by the hour.
At one point I meet Dr Page, my doctor's associate and I explain my problem in writing. He's a genial man who asks pertinent questions and actually waits for an answer before coming to his own conclusions. I hear him consulting with Jolly and I think Amy and he mentions Dilaudid over Morphine. My heart rises a bit at this and yes indeed, I am given Dilaudid and yes, the pain decreases.
The trach tube comes out today and is replaced by another type that will let me speak. It's not terribly painful, but my doctor, who hasn't visited me at all until now, finishes the procedure quickly and not very gently. He asks me to say "good morning" which I do and then he breezes out. I am told by Jolly that I should cough, but I can't manage to do so at all. She takes to opportunity to show me the suction version of coughing, which feels both like choking and suffocation at the same time and forces me to cough all the same. Not fun at all.
Post Op. Day 4
More of the same, except that my day nurse has changed from Jolly to Lorna, another Southeast Asian woman, but much more petite and quiet than Jolly. She seems downright skittish, but more gentle as well. Communication is still a problem. Not that we can't understand each other, but the feeling that there is a cultural problem doesn't go away, indeed it gets worse. Each complaint is taken more and more as an attack on her abilities rather than a complaint about the specific issue. Yes, I am in pain and need more meds. No I don't think you're keeping them from me out of spite. Yes I understand everyone's afraid of my doctor, but I am in pain now and need help now, not later when the doctor can be there to 'yes' or 'no' the dosage size or frequency. At one point I am in such pain from the lack of meds that I write a long treatise on why I need meds and how I feel like I am being treated like I'm already fully addicted to narcotics and need weening already. This becomes the worst part of my entire experience. The feeling like everyone is more concerned about me becoming addicted and therefore possibly a lawsuit threat rather than dealing with the very present and real pain right now. In fact, simply by including the word addict in my writing, all the discussion turns to how she feels I am accusing her of treating me like an addict and how she feels hurt that I would put that on her. "What will you do, when you are home and there is no dilaudid?" "I will cry like I am now, but my pain is right here, right now and it can help me right now. I will deal with the 'no-meds' then!" It's all I can do to not grab her and scream voicelessly "I'm the patient, you big baby! I need help and kindness and I don't need to worry about hurting your goddamn feelings!!"
In the morning I am greeted by Sam. She says she's my respiratory therapist and writes her name on the white board; RT:SAM. That is the extent of what she does. I never see her again.
One of my nurses, a male nurse I can't remember the name of, takes the day shift, I think. He's pretty much an absentee nurse and he informs me that my drains will likely come out tomorrow. He warns me that Dr. Rothman is less gentle than he could be. Great. Dr. Rothman comes in sometime in the morning and changes out my trach tube, from the plastic one to a shiny chrome version. It's not as bad as the suction but only slightly. I don't choke at least.
Sleep is still a long missed dream. I get an average of one hour every ten.
Post Op Day 5
My day nurse is the male whose name I can't remember for the life of me. My doctor has visited me again. This is not a good thing. He sweeps in, reprimanding me for asking for too many meds and lecturing me on addiction and such while he snips at fishing line sutures in my lip and mouth. It feels like punishment for being bad, how rough he is, and all I can muster is "I understand." He continues his monologue about addiction as he moves to my drain tubes. I have 4 of them and he pulls them out two at a time, like he's starting a lawn mower. They look like small hoses going in, but under the skin, they spread out wide with many holes for drainage, like the tentacles of some plastic squid snaked under my skin. This is by far the most painful thing I've ever felt but I'm glad they are out and over with. He chastises me one more time and drifts out, griping at the nurse because there's no cork on my trach tube to help me speak better. Since he did the entire changeover, I can't imagine who he thought was going to install that thing, whatever it was. The staff look like they're thinking the same but say nothing.
Post Op, Day 6
I feel rather neglected now. Apparently I'm off of ICU status but because of my doctor's pull at the hospital, I stay in ICU like all his patients. This apparently gives the nursing staff the freedom to ignore me more. I stop pressing the button and grit my teeth through most of the pain. Diane is my night nurse now and she's an angel compared to the others. She gives me a rough bath in my bed. Heaven. She gives me meds when she can. Only Lortab (vicodin) at this point, which doesn't nearly mask the pain at all. I stop complaining about it and accept that I am going to have to deal.
The male nurse is again my day nurse and he's a nice guy, but still rather absent. Various hospital help drift in and out offering advice on feeding at home, physical therapy and such. All very routine and perfunctory, but pleasant nonetheless. A nurse representative shows up to ask how my stay has been. My parents were present at the time and we nicely, but specifically talk about the many problems I have. She is of course very concerned and kind and consoling, yet clearly too late to do anything for me. Despite my experiences and my mother's ire over earlier nursing staff behavior, I do tell them that at this point, with the perspective of five days behind me that I would welcome Jolly back with open arms, despite my feelings about her care. As hard and harsh as she was, in many ways she was much more professional and thoughtful than the others, with Amy and Diane being the exceptions.
Post Op. Day 7
As if the hospital gods have heard me, Jolly is my final day nurse. She takes out my staples, something I had dreaded, but she does it absolutely painlessly. We joke about what a big baby I am and how I don't trust her not to hurt me, but it really does come across affectionately on both our parts, like she knew I would realize she was better than most, despite my issues. I am discharged in the early afternoon and after much waiting around for paperwork and food and supplies and such, I am finally free and on my way home.
Exhausted and happy to be out, my parents drive me home and I go to bed. To not sleep. Still the only meds I am allowed are weak ass hydrocodone (vicodin). The dosage I receive is in no way going to last the 11 days the bottle say. In fact, it is gone in two. But that's a later post.