Sunday, 14 December 2003
I remember telling my friend Rob what had been said to me at the hospital. I was in shock. We were at his house, sitting in the living room at the time. Rob did not seem to take it very well. He didn't say much, just stared at the TV, then got up, put his son to bed, went into his own bedroom and closed his door. I let myself out and went home. I felt totally lost, abandoned and alone.
A Biopsy was scheduled for me for Monday the 15th of December. I was scared. My dear friend, Nicole came with me. It was really no big deal once it was over. No pain, no anesthetic. It's going under anesthetic that I am actually deathly afraid of. But I was awake for this procedure. The only problem was they gave me Valium to supposedly calm me down. Valium does nothing for me, I knew that and I told them as much, but I have found that medical professional will sometimes act like the patient could not possibly know anything. Of course not, I mean just because I am always with my body, have personally been there to experience every reaction to any drug I have had to take, no, of course I couldn't possibly actually know anything about how my own body reacts to certain medications. Needless to say, the Valium had no effect. So I had to take myself away during the procedure, somewhere inside my own mind in order to disassociate myself from what was happening to my body. I did so by concentrating on a piece of instrumental music I particularly like that my friend composed. I just kept playing it over and over in my mind. It was as though I was listening to it. I've now christened that song "My Valium".
The actual Valium really did nothing for me and I was ready to walk out of there as soon as the procedure was over. They made me stay a while, but not the 2 hours they said I would be required to stay, they couldn't have made me stay, although they tried. I had actually laughed when the technician told me prior to the procedure that I would "likely not remember anything because of the Valium". The fact is, I could have walked to the recovery room and I had no intention of staying there for 2 hours. Twenty minutes was all I could handle, and even then I only stayed that long because Nicole was concerned and wanted me to. But the nurse wasn't the brightest bulb in the light socket, because while I was in 'recovery' she put the blood pressure cuff on me on the same arm the IV was still in, right on top of the still accessed IV. The auto blood pressure machine was set to take my blood pressure at certain intervals, I was also hooked up to a heart monitor. Well, as you are probably aware, pain increases heart rate, blood pressure, and in me at least, temperature. So, when the blood pressure machine kicked on, and put such violent pressure right on top of the NEEDLE STUCK IN MY ARM.... it's not unexpected that my blood pressure, heart rate, and temperature rose in unison with the tremendous pain. The nurse came running in when I started to scream out loud. At the time she rushed in, I managed to grab the BP cuff, and rip it off my arm. She began to panic because my BP was suddenly up so high, and panic some more when she realized I had ripped it off. She actually began to put it back on my arm, the same arm. My next comment was something to the effect that at least we had proved beyond reasonable doubt that pain did indeed increase blood pressure. The nurse looked confused when I told her "don't even try it" in response to her attempt to put the BP cuff back on. "seriously, you don't think there's a problem putting that over the IV in my arm? I'm leaving". (Nicole still tells the story of how funny it was for me to make the comment about pain causing PB to rise, maybe you had to be there to get the humour of the moment, but Nicole still laughs.) The nurse, at hearing me say I was leaving, started to fret again, began telling me that I had to stay for 2 hours. I told her that was too bad, because I plan to leave. She insisted that I needed to stay until the meds wore off. I said they only gave me Valium, there is no need for me to stay here. She took my chart as she began to say "no, they did not"... as she started to read the chart she continued "They gave you Diazepam.". I gave her that one eyebrow up, one eyebrow down look and said, "That's Valium". She actually called another nurse over and asked her, the other nurse confirmed it. I then traded my eyebrow look with the "I told you so" look and said, okay, I am now leaving. This poor nurse then tried to tell me that I had to have a wheelchair, it was hospital policy, I could not leave without being wheeled out. I wasn't impressed, and I just wanted to leave, but I waited.... after about 10 minutes I had had enough, I wanted OUT so I said to Nicole, let's go. This is absurd. Poor Nicole, she was so concerned and just wanted to make sure I was okay, she nervously followed me, because clearly I was leaving. I walked past all the nurses gave them a wave and before they could insist I stay until they got a wheelchair for me, I walked out.
I don't know how much time I have left, I have no intention of wasting it sitting around waiting unnecessarily with a nurse who doesn't know what Valium is or where not to put a PB cuff.
Wednesday, 17 December 2003
When the results of the biopsy came back I was told the results were "indeterminate", which means they did not know anything for sure. The pathologist did not see clear evidence for, or against the diagnosis. I was told the sample could be sent away to a specialist pathologist, but that was in another state, and would take several days. The doctors were more interested in cutting me open and removing this lump, which was what I was told they recommended. I said no. Send it to the specialist. I had read enough to know that in order to diagnose Hodgkins Lymphoma the pathologists must find the abnormal Reed-Sternberg cells. Typically, it requires a specialist pathologist for a definite diagnosis. I was annoyed that it wasn't sent to a specialist to begin with. There was no way anyone was cutting into me without at LEAST a specialist diagnosis.
It was Friday December 19th sometime in the afternoon that my Dr. called me and told me "You have Hodgkins". I was stunned, I could hardly hold back the tears long enough to finish that phone call. I remember aimlessly writing down the message she was giving me about my appointment with an oncologist. I wrote the date and time and the phone number, the rest of that conversation was just a blur. I remember being thankful it was Hodkins, I knew if I had to have Lymphoma, Hodkins was the most curable. But even so, the fact remained, I had CANCER and this was like a nightmare.
I could not stay at work any longer, not after the news I had just received. I never imagined that my doctor would tell me that over the phone, so when she called I thought it must be good news - surely bad news would be delivered in person. I expected the receptionist to call and make an appointment for me. But no. My doctor told me that day on the phone. I went to the director of my department and asked to leave work early. I knew by what he said to me that he would fire me as soon as he legally could. (More on that issue later). I knew 2 things that afternoon. I had cancer, and I would be fired. Needless to say, this did not seem like a very good day.
Dealing with the News
Thursday, 18 December 2003
I left work early and I called Rob. I told him I wanted to talk to him and I went over to his place. We first just chatted about a few things he had wanted to chat about. So I just held onto my own news until he had been able to talk about what he wanted to. Because of how he had dealt with this news initially, I was concerned how he would deal with the confirmed diagnosis now.
Of course we had discussed it after that first day, and he had been sorry about his initial reaction. He explained that he had been upset, he said he had never had to deal with a friend of his being diagnosed with Cancer and just didn't know how to react. I understood, but I needed to know if he could handle what was coming. I asked him if he thought he would be able to handle it if it was confirmed that I have Cancer. He assured me that if that's how it turned out, that he would be able to deal with it. So I told him, it has been confirmed, I do have cancer.
He dealt with it so much better than his initial reaction. He held my hand while I cried. What else was there for either of us to do? It was my friend who give me encouragement and strength on the day my world truly fell apart and changed forever.
I basically tried to ignore things until the first oncology appointment which was set for January 6th 2004. I read so very much about cancer, about Hodgkins, treatment etc. Sometimes I became very upset. My friends were there when I just needed to escape, when I needed the company of someone I could trust. It was hard to be so far away from many of my dearest friends who were back home in Australia, or in the UK. But I was lucky enough to have developed the same type of deep, everlasting friendships with some people here, too. Without them, I could never have even started this journey.
I need St Elmo's Fire...
Friday, 02 January 2004
(Journal entry written January -02-2004 6:09:57 PM)
I need St Elmo's Fire...
Watch the movie.... "they made it up when they needed something to keep them going when times got tough"
Times are tough.
What day was it that they told me I had cancer? I don't know anymore. Seems like a million years, seems like yesterday. Seems like a dream...
This can not be real. This can not be me.
I have Hodgkins Lymphoma. I have cancer. People are afraid to say it, but I might not be alive a year from now. I have so much left to do. So much left I want to do. Will I get the chance?
I have things I want to say and I can't even say it right now. So, if I can't say it now, when will I? I am running out of time.
So this takes us from Sunday December 14, 2003 to Friday January 2, 2004. I know what you're probably thinking, that they can't just fire someone for having cancer. Well, yes, actually they can. Of course they can not SAY it is because I had cancer, but what they can say is that my job was too important and vital to have it left open until I can return to work. And of course, I was so very sick with my chemo that I couldn't hold down a job. I tried, I really did. I thought that I could in the beginning, as many people who have chemo can. But there are many types of chemo drugs and they all effect people differently. I was okay for a few days a month, right before each treatment, and then for 2-3 days after, then I became very very sick and debilitating weak again. I learned to plan my time around the few 'good' days I had each month. I wasn't well on any of the days, as you can imagine, but there were a few days when I was less sick, and less weak and those are the days I had to try and do things I needed to get done. To go out and run errands, pick up medications, buy more bandannas in every color possible to cover my quickly balding head, things like that. So, no, I was not able to adequately hold a job, and I had to take sick leave. I knew all along that they would fire me the day my long term sick leave was all gone, I could have had a betting circle on what day they would fire me. The winner would have been the person who picked the very same day my leave was expired. In fact, the letter was dated, and postmarked, that exact day. They probably predated the letter, if truth be told.
The irony was that I worked for the Hospital Association. I was hired to develop, completely, from scratch the "Health Careers Department", which was to focus on encouraging people to choose a path in health careers to help mitigate the shortages in the state. My first day at that job I had a desk and a chair, they had not even gotten me a computer yet, but I set about designing the logo for the department. I subsequently designed every thing else. All the documents, forms, brochures, website. everything. Nothing existed until I began work at that job and created it all.
I built that department from the ground up, quite literally. I'd never had that much experience with medical issues, but I learned a lot while I worked on developing literature for so very many different health careers. Irony number one, I guess I then got some on hand experience and insights into some of the careers I had been working to promote. Irony number two, as soon as I actually needed some of those medical professionals in the careers I had been working to promote, the 'hospital association' fired me, because I had cancer and could not work. They stated that job was so important that they simply could not leave it open or make accommodations for me while I was unable to work. What I found amusing was that they also could not find anyone to fill that job for a further 8 months.
Was I angry? Yes. But not as much as you would think. This all came about because I had been asked to lie by my supervisor, and I had refused. We had gotten along very well until that point. When I refused to lie, that is when things changed. I was then treated very badly. I could write a whole book on this experience and what went on surrounding this. It's deplorable, and infuriating, but ultimately I knew I needed all my energy to focus on surviving. This supervisor had become very nasty, and had lied to me, and about me. Initially, before I became too sick to work, he had told me that I could exchange some hours I had worked overtime for some time I needed to take off for doctor visits. But after the fact, he claimed I had never been given permission, so not only did they take my vacation and sick time off me to cover it, but I never was compensated for the overtime. He also started to call me on the phone constantly while I was out actually having chemo, presumably to make sure I was actually having poison pumped into my veins, because you know, just because I was going bald, and became pale as a ghost, was weak and ill all the time, who was to say I didn't just do that to pretend I was sick, so I could get some time off, right? He kept calling me to ask me when I would be back at work. He often claimed that I had not informed him I needed time off and that he had expected me in the office. (Yes I quickly learned to BCC someone else on any email I sent to him.)
He even called my friend, Tracey, who was listed as my emergency contact in the personnel file he gained access to in order to get my home address (they only had my mailing address, a PO box on the file he got hold of). She asked him who he was, naturally, and why he wanted that information. He said he wanted to go by and check on me, and send me flowers. I am pretty sure he wanted to go by and see if I were really sick, because you know, flowers were never sent, of course. I don't remember everything Tracey told me she said to him, but she is an Aussie, just like m,e and not apt to fall for such obvious crap. She did not like his line of questioning at all, and she gave him, as we say in Australia, 'a serve'. I believe she followed that up with an email. I still smile when I think of that. Seriously, what type of an ass tries to harass a cancer patient? He deserved whatever verbal slap Tracey gave him, and then some.
As I said, initially I had a good working relationship with my supervisor, but his attitude and behaviour certainly changed when I outright refused to lie when he told me to. So, all of this came about because I wouldn't lie. Then again, I wouldn't have harassed a cancer patient either, so I don't have a problem with my own conscience.
I was much better off away from that place. Can you imagine the added stress I would have endured had I stayed? I can only hope that karma served him up a heaping helping.
Until next time, go hug a friend, and tell them how much they mean to you.