Tomorrow I have an appointment with my oncologist to discuss the results of my latest MRI. Those of you who have been following my blog will know the last results were “unclear” at best and “not great” on the lower end of the spectrum. Both Nicole and I have a lot of anxiety going into tomorrow’s visit. Living in the situation we are both living in is not easy (understatement?). A big problem is the “not knowing”. Sometimes I feel that bad news has benefits over no news in the sense that at least then you can plan for and deal with the future. Nicole and I cannot plan for our future. We find it hard to plan for next week. I feel terrible not being able to commit to our many friends with what should be a fun summer spent with friends & family. Instead my answer is usually “For sure! If we can; which we might not be able to.” Are we able to go out Friday night? That depends on whether or not we are an emotional wreck after having heard potentially bad news from our visit with the doctor. Can we go on a trip in a week or two? That depends on what the next round of treatments for me is and whether I have to be in Winnipeg for blood work or check-ups. Can I even go on a plane? From what I understand I’ve been given a “lifetime dose” of radiation treatments. Simply taking a cross-country flight exposes me to natural radiation from cosmic rays. Is thinking like this just being paranoid? Maybe. But when the thing on the line is your life, paranoia can be justified.
Nicole and I are hoping for the best. We aren’t sure what “the best” is. In another world “the best” is “IT’S GONE!!!” but that is not a possibility for us at this point. The best is to hear that the growth that showed up on the last MRI was pseudo-progression and that current treatments are working well. The other wonderful path would be that the tumour is in fact progressing (growing), but that they put me on some sort of trial drug (treatment) that I respond to and have success with (where success is “continuing to live”). The problem with trials is that they are trials for a reason. They don’t know if they work yet. When they do, it can be the case that they don’t work for most people. They key is that for the “some people” these trials do help, they can be helped dramatically and can live for long periods of time (where long = 10+ years). Neither one of us know what the results will be, but at least then we’ll know just a little bit better what our short term future will involve.
At some point it might come down to the need to have another surgery. This would be a craniotomy along the lines of what I had done the first time in November of last year. This is scary as last time I was lucky to have come out of my surgery with no impairments or deficits. It might go just as well a second time around or it might not. Nicole says it best when she says “I’d be happy as long as you were still you”. If I come out of surgery a quadriplegic I’d still be Tom, just less athletic than I am now (which admittedly isn’t very). It is possible I could come out of a surgery with a worse condition than cancer called “being a douchebag”. There have been cases where people have suffered some brain damage leaving them with completely new and unpleasant personalities. Anyone who has taken intro psych knows the case of Phineas Gage. This is a fear of mine as well. This fear is not exclusive to surgery. I do have a massive growth in my head that is constantly pushing on many parts of my brain. The two areas most likely to be affected by mine would be personality and memory. If I woke up tomorrow and had lost my sense of humour or optimistic attitude I would no longer be Tom. If I woke up tomorrow and forgot all that I had previously known I would not be Tom. So there is a day-to-day fear with many of these things and a fear of the possibility of facing these things at some point in the future.
I have to always remember how fast things can deteriorate. As of November 1st, 2011 life was pretty normal. As of December 1st, 2011 life was anything but. Today is July 7th, 2011. What will life be like on August 7th, 2011? Not I, nor Nicole, nor you, nor my oncologist knows the answer to that. But I have stated before and stand by my claim that it would be useless to sit around in fear waiting for what bad may come, for it might not come. I might respond well to whatever treatments I’m on and live to see a breakthrough medical advancement that allows me to live to the days when the tough question I must ask myself is “Do I really want to become part of the new human cyborg race?”
Another topic I want to cover (and have indirectly if not directly) in prior blog posts is Nicole. I have said and continue to say that she is by far the greatest thing in my life. It is unbelievable the strength she gives me. I find it terribly unfortunate that I get such support for everything I am going through, but Nicole doesn’t (in my opinion) get enough support for all she has to go through. Don’t get me wrong, her sister Jen, her Mom Pat, and her Dad Steve are amongst the greatest people alive and are amazing at offering the endless support to both Nicole and I. My point is merely that even this support is not enough. She doesn’t deserve to be going through all of this. It is terribly unfair that she has to deal even a day with everything she must go through. On November 23rd, 2011 Nicole’s life stopped too. Every day for her is spent facing unimaginable fears, sleepless nights, and she does so all while staying strong for me and keeping me on track.
I’m sure no one (not even I) can fully and truly appreciate or understand what Nicole is going through, but I think I am best poised to give a glimpse into her world. Nicole loves me more than anything in the world. I know this because she tells me all of the time (and I’m a pretty smart guy who can pick up on most things). She knows that I love her more than anything in the world (she’s a smart cookie too). For her the prospect of losing me is beyond upsetting. It is beyond fear-induced paralyzing. It is enough emotional pain that she feels it physically. She has had several panic attacks and after even the best of days is left to ask “I wonder how many of these I have left?” She says the nighttime is the worst. That is the time when all of the distractions are gone. There is no TV, no horrible Sears return to deal with, no “Papa?” to listen to. I think there is a spot on the ceiling that might wear through sometime soon.
She has put her life on hold for me. She has all but left her job, discontinued her studies at university, and dedicated her every waking moment to me. This allowed me to complete my university studies and earn a commerce degree that should rightly have her name somewhere on it. She never has complained or been bitter for a single second about any of this. She has assured me she’d rather incur a hundred years worth of debt so that I may enjoy my time, only for her to deal with it all later.
What Nicole is going through is like some sort of pre-death mourning period. She is constantly grieving a future loss that I am doing my best to avoid. She doesn’t express these feeling and emotions very much to anyone. She doesn’t want to burden me with any negative feelings and so often suffers alone. I always tell her to be honest and open with me, but ultimately it is too upsetting to watch the person I love so unbelievably much suffer and I end up breaking down myself. She, seeing me break down, then feels guilty for having told me anything and feels even worse. An important step for us both has been (and continues to be) the understanding that we are not a couple of people going through a crappy situation. We are ONE COUPLE going through a crappy situation (again… understatement). Her pain is my pain, and my pain is her pain. I have had to learn that I must tell her any symptoms I have, even though I know it will worry and upset her, because it is important for me to do so. She must know that she must not suffer alone and keep me from knowing her pain. We’ve gotten better at this, but I think we both still have room to improve. I now tell Nicole every time I have a pain or physical issue, but I sometimes have to convince myself to do so thinking “I don’t want to worry her” but then quickly remember “We are a couple. Any pain I am experiencing is a pain WE are experiencing and she has the right to know”.
I have cancer. Everyone knows this. Nicole has something worse than cancer. She has a husband with cancer. People know this, but probably don’t stop to give it much thought. I honestly believe I have it easy compared to her. I 100% mean that. #1) I would rather not have cancer. #2) I would rather have cancer than face the prospect of living a life without Nicole in it. I didn’t marry her thinking “Ya, she’s pretty cute. I could see spending some time with her!” I married her realizing I’d found my soul mate. I’m not a fate-believing astrological-sign-following hippie (my apologies to all the hippies out there), but truly what I have with Nicole is beyond words. This is not to say we don’t argue or agree on every issue. Alas I must at times compromise (which is how I view the toilet seat debate. She thinks she’s won, but really I would have left it down about 18% of the time anyways, so really I “met her in the middle”, or upper quintile if you will). She is my everything; she is my wife, my best friend, my pill sorter, my needle injector, my chauffeur, my grocery bag carrier, my confidant, and my therapist; she helps me become a better me. People often say, “You are so strong” to me. I am not strong. I just have Nicole. She is my strength, and yet I do not often hear people say to Nicole, “You are so strong, I can’t imagine what you are going through.”
This leads me back to a point I believe I had made at some point in the past (if not on this blog, then to some of you in person)… it shocks me and boggles my mind that anyone could ever accuse Nicole of being selfish or doing anything less than looking out for my best interest, but nonetheless this is exactly what was put before me. Again I return to a request for you to jump into Nicole’s white DC’s (step into her shoes). Here you are spending every waking hour at a hospital, scared out of your mind (but keeping it together for your then boyfriend’s sake), and doing all you can just to keep him mildly comfortable, only to have people question your motives for doing so? To say that would hurt would for sure be an understatement.
While I’m on a bit of a rant (minus the back alley, graffiti, and cool camera shots) I’ll bring in the issue of “things not to say”. I’m not so much doing this for the benefit of Nicole and I personally, but for the general understanding of what people like us go through in a situation like this and how NOT to say certain things.
For example, don’t use the word “just”… ever. Saying to either one of us, “You guys just need to stay strong” is not a smart thing to say. While it conveys a mild sense of support and well wishes, it also elicits an angry/sarcastic “Really? That’s it? I wish the doctor had told us that!” Take the word just out? Much better. Though still even without the word “just” such obvious statements are best left unsaid (I find). I realize in these situations no one knows what to say, but in such times simply being there for the person is more than any words could say. I myself recently faced such a situation myself after my wife’s best friend had her Grandfather pass away. Upon seeing her off to visit with her family that day I gave her a hug and said “I hope you have a good day”. I later realized how stupid that was to say, but Nicole reassured me “I think she was just happy you were there and gave her a hug” which was true. I would just say you don’t have to say anything to show support, and sometimes saying the wrong thing is worse than saying nothing at all.
When my father passed away I experienced countless expressions of sympathy from people. Some might say, “I’m so sorry.” Or “Don’t worry, things will get better with time.” The best words of sympathy I received from anyone were spoken by my then neighbour Jeff, who said three words: “That’s shitty man”. It touched me as no other words did because it meant simply “I understand”.
I had mentioned the possibility of the need for future surgery, which is in part why I am writing this blog update now. Once you are in the hospital, you don’t get to go for “Facebook / Blogger update time”, so best to say things now to cover future possible incidents.
#1) Nicole and I love the support we get from everyone but love and support are sometimes best from a distance. When you are in the hospital you are in a small, noisy, uncomfortable space. As nice as it is to see visitors, it can be overwhelming to deal with. I was terribly uncomfortable (physically and mentally) during my hospital stay 7 or so months ago. When guests arrived I felt the need to stay awake and talk to them, despite often being in pain and very tired (the hospital is not a great place to find good sleep). My social worker assured me this is a problem faced by the majority of hospital patients. I would not want to tell people not to come for a visit, however short visits to say “Hi, how are you doing?” are preferred to longer visits of people sitting in chairs staring at me for prolonged periods of time. During my rougher periods in the hospital I had made it clear to Nicole that I did not want visitors. I just wanted to sleep (or better yet “try to sleep”) which was not possible with people coming in and out. She indicated to others that it would be better not to come, which unfortunately some people took as Nicole trying to keep them away from me. Of course this is only natural given that from their perspective the (then) girlfriend is saying, “stay away” and when they show up the patient is saying “HEY GUYS! SO GLAD TO SEE YOU!” I truly was glad to see everyone who came, and it meant a lot to me. I just needed a lot of rest at that time. Perhaps a better future method would be to have designated “visiting hours” within the hospitals own allotted times such that I could get my rest guilt-free and be more alert for my visitors and be mildly awake to enjoy their company.
I’d like to repeat that I’m saying all of this in part to prepare for possibly finding myself in this situation again, but also to tell the patient’s side of the story to give people an understanding of what it is like to be in the hospital bed. If a patient tells all of his (or her) coworkers they’d be best not to come visit, it doesn’t mean there is some sort of issue between them, it just means they are in a lot of pain, on a lot of drugs, and less comfortable than time spent camping in the woods in a two person tent on top of a twin deflating air mattress.
#2) No whispering. Maybe this would not bother other people, but it bothered me. I found that a lot of the time my visitors would whisper to one another likely to avoid creating noise that would keep me from getting my rest. Instead it freaked me out and I became paranoid believing everyone was keeping secrets from me and that they all knew things they were not telling me. Maybe it was because some of the drugs I was on? All I know is that I far preferred it when people spoke at an audible level, even when speaking to one another, over the whispering.
#3) I want Nicole next to me as much as possible and as close as possible. Nicole often asked me “Do you want time to yourself?” offering to leave me alone in my hospital room while she went for a walk or some such thing. She was concerned I’d have “too much Nicole” and get tired of her being there. That was never even close to the case. If Nicole wasn’t there I was often panicked and felt anxious. More Nicole is better than Less Nicole. I think some people took this as Nicole trying to monopolize my free time (those times I was not in some sort of morphine-induced semi-nap) not allowing them to have such a time. Nicole never prevented anyone from having such a time and would have certainly left to allow anyone to have one-on-one time with me. No one ever asked. Perhaps some were thinking she would (should?) offer this up, but this was not the reality of the situation. For future, know that anyone (family, friend, tax collector or otherwise) is welcome to ask Nicole or anyone else in the room at that time for such time with me. Nicole would welcome it as I’m sure she had times where she was hungry or had to use the washroom but couldn’t bring herself to leave my side.
I think those are the most important points. Anyone who knows me knows that my number one concern is always “everyone else” and I am slowly learning to put myself somewhere on that list. This blog is being writing to express myself honestly without fear of “stepping on anyone’s toes” or feeling guilty for upsetting any of my readers. Those closest to me I have thanked a million times over for their love and support. I have discussed many of the above points with many of you one-on-one, but I felt it was necessary to have this discussion with everyone for the reasons I have already mentioned. I hope that I do not find myself in a hospital bed any time soon, but that if I do, everything will go smoothly and I won’t be in there long enough to have to worry about any of the above. I go for my results in about 24 hours +/- from now. I don’t expect I’ll be updating the world immediately afterwards or perhaps that day at all. I will try and make a point of giving at least a small update this weekend.
Cheers!
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Tom
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