Author Trigger Warning: This is not light reading on the topic of cancer. It is what I have had to live through with the disease as I continue to fight for a cure. If you truly want to understand what it is like for a patient to go through this journey from the inside, then read on. If you are not prepared for the sort of darkness this disease brings it may be best you pass on reading this post.
March 23, 2017. 9:27am
That was the exact time my life changed forever. I went to the doctor with something that for over two months had been eating away at my normal life. Before I walked into that office on that fateful day, I had been slipping in my day to day activities. I walked down a long hall at my work literally leaning against the wall. My knees often buckled when I rose from my seat. I tried to make myself eat lunch, buying the smallest amount of food that seemed at the time I purchased it would be enticing enough to eat – it often wasn’t and I’d stop only after a few bites. Nothing tasted right. I knew something was horribly, horribly wrong. For over a month I hid it from my husband. I said nothing, I just did my best to shower and get ready for work and slowly crept out of the bedroom and with wobbly knees I was so unsure of I made my way slowly down the staircase to the car (once seated I was safe for the journey) and then I drove myself to work.
My day to day for the first two months of that year were sketchy. Thankfully, being a network engineer I didn’t have to visit too many people at their desks when things went awry. I could use remote technology to remotely control their systems and rectify the situation. If it warranted further assistance we had it within our power to ask for one of the operations crew to make the physical visitation to assist. So, for the most part I could stay rooted to my chair and desk while I continued to play that things were still somewhat normal. Lunchtimes soon turned into me just putting down the back seat of my car and trying to rest for a half hour or so to gather my energy to finish the day. Once the trek to my car was so bad I nearly fainted in the parking lot. I was scared to the point of absolute silence over what I was dealing with. I tried every way to do things as normally as I could.
It was a lie I told myself. Because I desperately wanted it to be true.
Have you ever watched Lord of the Rings? I’m sure you have. It’s one of my favorite series of films. But lately I’ve come to see it analogous to my diagnosis of cancer.
I even had a moment like Frodo, Aragorn, Gimli, and Gandalf (with the others) at the Mines of Moria where they struggled to find the phrase to open the gates and enter. I called my doctor with the symptoms I’d been having. This was in February. I explained everything that I was dealing with and the scheduling nurse informed me that it would be three weeks before I could see him. I took the appointment. What else could I do? I asked that if there were a cancellation please call me and let me know.
When I saw the doctor on that fateful day, and his preliminary examination startled him, he asked why I had not informed the nurse of the severity of my situation. I told him what I said and he shook his head and murmured something about how they want to hear a certain phrase that would escalate the necessity for an earlier appointment. Somehow I missed the memo on that secret decoder ring phrase that would have gotten me an appoint sooner. I grumbled a bit inside, casting a heated gaze at my husband along the way but it was what it was. We had to deal with where we were at that time. But after he had me wheeled down for the ultra sound it was confirmed, I had a tumor and it was most likely cancerous.
I had no feeling about it. I couldn’t grasp onto anything inside to tell me how to feel about those words from his mouth. I just nodded and glanced at my husband but said nothing. Flash back a year ago and I was eating breakfast at the dining room table, my granddaughter was watching cartoons (it was a Saturday morning) and I remember as I finished up something in the back of my mind said, “You’ve got cancer …” I had to no reason to think that. I felt fine.
It was fleeting and I soon forgot about it. But I recalled it the moment the confirmation of my disease left the doctor’s mouth. I think this is why I couldn’t grasp at anything to express what was building inside over this shocking diagnosis. The next thing he said was that on Monday, the 26th, (this was a Friday morning) he wanted me at the hospital for surgery to remove the tumor. I had two days to prepare over the weekend. Now, up to this point I did everything in my life to avoid being in hospitals. No broken bones, no prolonged diseases or ailments that would require a stay in a hospital of any kind. I detested being there – even to visit others. Now, at 52, I was going to have my first operation. I was terrified.
But I dutifully went to the appointment, went through the process of being prepped for the surgery and even tried joking with the nurses while I was being prepped. Oddly enough, it was an outpatient surgery. As soon as I came out of it I was sent home. Two days later I was back at work. It all seemed so surreal. A part of me was missing, the cancerous part, but still it was something I was born with that was now taken from me – leaving me marked as some sort of freak. It was then that the cancer began to voice itself. Like Smeagol, Gollum began to whisper to me.
“I have you now, my precious …” Don’t laugh. It felt very real. I walked around much better and was able to start eating again in a normal fashion. But still that voice that I had cancer lingered. I knew the battle was far from over. In a week’s time from the initial surgery I had to go for a PET scan to see what residual cancerous cells still existed. This was news to me. I didn’t know that I could have it elsewhere once the tumor had been removed. The PET scan revealed that I had cancerous cells in various places along a chain of lymph nodes that lead to where the tumor was. I would have to have chemo treatment to eradicate them from my system.
The good news, according to my oncologist and my husband (who has a medical background having practiced medicine early in his career) was that the type of cancer I had was 98% curable. I had one of the “good ones” …
Nothing felt great about it. There was no “good” in any of this.
And still that Gollum voice raged inside … with over tones of Darth Vader: I have you now … don’t think you’ll get away that easy.
Slowly I informed a few people I trusted at work what I had. Luckily, the company was a big advocate for cancer (often having huge company wide drives to donate for research for the disease and for additional resources to be funded). One of the programmers, a Brit ex-pat who I got along with came over and revealed to me he was dealing with stage 4 colon cancer. But his prognosis was excellent, he was beating the cancer. He told me that if I ever wanted to talk – during lunch or whatever – he was there for me. Then he gave me two points to take to heart: 1) Allow myself to feel (without guilt of any kind) what I wanted to feel; and 2) Find a support group – “You’ll need them more than you know.”
I have followed his advice on those two profound points and it has what’s kept me sane through out this long battle I’ve been on.
So where’s the darkness I warned of?
It’s been here all along. It whispers to me. When I cut up an apple to have as a mid-day snack, it whispers, “Enjoy this, it might be the last time you eat one.” When I’ve been writing, working on my latest novel, I type out a couple of thousand words and then I feel the need to nap, it’s there too, whispering, “Can’t keep up with what you used to do, huh?” I don’t sleep soundly now. Even with the drugs my oncologist prescribes to assist with that. It’s a restless sleep – with that Gollum voice ear worming into your mind terrible thoughts of how others close to you will deal with your death. You panic, you toss and turn trying to shut it down, find some sort of peace from the constant whispering that it does.
You know what else it does to you? I makes you one of the best actors on the planet. Laurence Olivier (were he still alive)? Bring it Larry, it’s on. I can out act normalcy to yours any damned day. My whole life is one long scene that has no resolution, no curtain call, no bows. I smile, I make jokes, I converse, all the while that Gollum voice has a hold of me inside, eating away at my resolve to present myself as I always have. Make no mistake, it’s an act. Underneath, I am white-knuckling it every damned day. Nay, every damned second.
In group we talk about how the disease affects our lives and those around us – our loved ones (friends and family). It often comes up that there’s that little squinch that happens to their bodies when our friends or family ask, “how are you feeling today?” – it’s almost imperceptible but it’s there. A slight pull back of, “Just say you’re fine so I don’t have to know too much.” So, you learn to edit yourself on the fly. You lie if you have to. To comfort them. Because that’s part of the gig now. This disease has you by the proverbial throat and is whipping you around like a favorite dog chew toy but you’re expected to say, “It’s okay, I’m dealing with it,” and move on so they feel they’ve done their part to inquire, but also your part to not say what’s really fucking happening. As if by imparting some small part of it they, too, will catch it somehow. That the mere exchange will cause those cancerous cells that have clawed their way into every part of you will some how choose that moment to release themselves and fly out of your mouth and into theirs.
It’s absurd, but people react to you very differently once they know you have it. There are exceptions, certainly, I am speaking in broader terms here. Family and friends who have been exposed to others who have had cancer and actually helped them through it, get it. They ask you sincerely and there is no pulling back in their body language. They know all too well what is raging inside: the anger, the hurt, the freakish Gollum like feeling that overwhelms you at every turn.
This disease is insidious. It robs you of your normalcy. It takes, cleaves and eats away at everything you hold dear in your life. I watch others complain of everyday things like co-workers or some asshole on the freeway, etc. I want to scream at them how I’d like to have those troubles again! How dare you give me your common place problems!
Instead, I blink, holding back angry tears, and just smile as best I can and nod while listening to their simple problems in life.
Or seeing their accomplishments. One part of me, the small part that used to wholly be me, is happy for them and celebrates what they’re going through. But the majority of me grows darker, more malevolent over their happiness. I don’t want it. I fight it. I don’t always win. But I still fight. Please know, the fight is there. Fucking tears …
My husband is a tremendous support. While I try to sleep at night he is busy researching for immuno-therapies that are on the rise and are providing wondrous cures for all sorts of cancer now. We are entering a new age of treatment – one where radiation, surgery and chemo will be a thing of the past. The trouble is, they are all in clinical studies that you have to match up to. So, he combs the net at 2 to 4 in the morning searching for studies that I might be a fit for. This is the same man that examined over 3000 pages of my medical records to distill them down to a narrative that we can present to any doctor or specialist we see that gives them exactly the points they would be looking for from a doctor’s perspective – sparing them the effort to comb through those records themselves. They often thank him profusely for the effort. It shortcuts our time with them and we can get to the heart of the matter. He’s truly a superhero when it comes to my care. And it’s not easy on him. I see the toll my disease is extracting from him. He’s tired, too. Being 16 years my senior it’s quite a bit for him to take on being the caregiver in this situation. I do what I can to alleviate that as much as I can but sometimes it can’t be helped. I hate myself when he has to do something for me. Not because it takes from him insomuch as I can see clearly how much this disease has robbed me.
And to be clear about the rigors of chemo – it is different for each – mine required a hospital stay for six days. The chemo would start at 10am and continue through the day and into the night ending at 6am the following morning for EACH cycle. I had roughly three hours to be free of that pump machine they had me connected to. Oh, and to make sure that the effects of chemo weren’t too harsh I set up a maze with the pump machine that I had to navigate amongst the table tray and the side cabinet next to my bed that let me know if I could do it without hitting anything that I was still in some sort of control of my muscles. That the neuropathy that the chemo causes hadn’t crippled me to the point of not being able to maneuver as I needed to. All the while I had to fucking get through it without pissing myself. But I did it so that each time I could get through the maze of tables, cabinets and that five pronged wheeled pump machine and still make it to the bathroom I was doing good. It sounds meager, I know. But to me, it meant the world. Don’t think I am not crying a bit as I write this knowing this is the level my life has come to.
There is this pervading feeling that like Frodo you are carrying the ring to Mount Doom. And every little horrible thing it does to Frodo along the way you can completely identify with it. You can’t have a moments rest from it. You can’t put it down and walk away just to breathe and feel like it’s going to sort itself somehow. It’s a race. It’s exhausting. And your beat. Like that chew toy you feel whipped around, battered and bloodied lying in a swill of piss and mud and someone inside of you says “Get up! I’ve got more where that came from.” And you’re strong because you’ve endured. But you’re tired.
So. Very. Fucking. Tired.
Tired of editing yourself, tired of lying to others saying you’re getting through it okay when you’re not. Raging at the disease every time it whispers it’s malignance to you. Watching yourself waste away – the chemo it is said adds ten years to your life from an appearance standpoint. I see it. It’s like those years were robbed of me in just one year of fighting this disease.
Yet, I am tempered in that anger and rage because there are those in my group who have been battling it longer than I have. There are some who are resigned that there is no cure for them in sight. They manage the rest of their lives knowing that chemo will be a part of it until they take their last breath. So, I count myself lucky (so far) to be amongst them but not in their shoes. “There but for the grace of God …” right? I’m an atheist through and through but I get the meaning behind that phrase.
I just received a call from the Cancer Center that is overseeing my case as I write this post. My PET scan has been approved by my insurance. With the last of my chemo completed this is the moment where we see if it did its job in getting rid of everything. Even if it’s clean this time, I have to have another six months from now and check it then. This is the nail biting time. A recurrence can spring up at anytime if the chemo wasn’t completely successful. So, while I have gone through two full rounds (four cycles each) of chemo to address my cancer, I am still feeling shaky that it took. The reason I stand on this is that my cancer has not behaved like these types of germ cells should – slow moving and responding well to chemo. I’ve been both resistant and the disease spread from two tiny spots on one lymph node in December to spread along my lymph chain within a matter of weeks. So, no, I don’t hold out that chemo did it’s job. I am expecting something to be there and that my journey to fight this thing will rage on.
And I am scared. I am fighting for my life while trying to keep a smile on for the rest of the world to see when all I want to do is scream to the heavens “Why me?!”
I write, escaping into my novels for some refuge from the Gollum voice telling me there’s no Mount Doom in my future. If I let my characters voices clog my head I can’t hear that Gollum creature trolling around back there. But I feel the blood it extracts from me – even when I can’t hear it. I’m strong … but I’m tired.
So, very, very, tired.
Until next time … (fingers crossed)