Monday, June 20, 2011

Reality bites

I really hate to be a Debbie Downer, but right now reality is biting my @$$. I try very hard to present the positive attitude and aspects of what I've been through and continue to fight. Apparently, I do really good job most (if not all the time) -- according to how some people perceive me and my situation. Let me explain the realities I face as of now.

1) Cancer is not fun nor is there a quick fix. There is the initial time where the patient is in limbo -- not knowing what will happen next and fearing the worst, while hoping for the best. Then treatment options are presented. The vast array of treatments and the consideration of their myraid side-effects is mind-blowing. Then treatments begin with their own time-line. Eventually treatments end. However, simply surviving the treatments does not mean the patient is back to their normal self. No, the treatments leave their own marks. There is also the ever-present fear of cancer returning or striking somewhere else. No cancer patient that I know (I know many) can truly know they will never get cancer again. We can never know if, when, or where it will strike us again. Therefore, even though I put on a happy suviving face, the fear lodges itself in my heart. This manifests itself as anxiety/panic attacks for me. Most times I can beat it back and truly believe we are cured. However, often, a twinge of pain here, a memory lapse there, etc and I ask myself -- is it back?

2) Chemotherapy only last a finite amount of time, yes. Some of the effects are only temporary - hair loss being the most obvious. Others have longer-lasting effects, but do eventually heal -- for me my blood counts were slow to recover post chemotherapy, but now are at (theoretically) optimal levels. However, some other side-effects (neuropathy, chemo-brain, and random bone pain) can last a lifetime. To my knowledge there is little, if anything, a patient can do to lessen the risk of these long-lasting side-effects or heal them once they arrive. I suffer from chemobrain - loss of some memory capabilities. I also have neuropathy - loss of sensation and/or super sensation (burning in my case) of my fingers and toes. I also suffer from deep bone pain at random times.

During treatment, I tried to make light of the situation even as I tried to explain the truth behind what really happens. Making light of a situation does not lessen the severity of the situation, nor does it mean a darker side is not present as well. The darker side may manifest in obvious side-effects, but the dark can also linger in more hidden areas of the patient's life. There is no denying the lingering presence of chemotherapy, however, it is not spoken of in polite company. It is not something that displays itself. Some doctors even deny the occurrance of some of the side-effects. Most doctors simply shrug their shoulders and insist that these lingering side-effects are simply a normal part of life. Someone like me, with a young family, many years ahead of her (hopefully), and a career tries to overcome these lingering side-effects. However, some are so detrimental to the psyche and body that they disrupt my sense of 'normal.'

3) Surgeries are transient, yes. However, there are multiple surgeries involved (in most cases). Many of these surgeries involve multiple systems. Any disruptions to these systems can devestate the body's ability to recover, adapt, and heal. Each surgery carries with it known and unforeseen risks. Each surgery can have less than stellar outcomes. Not to mention that no surgery (in my experience) can truly bring the body back to its natural and healthy state.

As a breast cancer patient I lost a 'non-essential' part of my body - my breasts. However, as a woman and mother, I feel that those 'non-essential' body parts are actually a physical sign of what I am -- a woman and mother. Therefore, I cannot simply shrug my shoulders and continue without them. That puts me in a dreadful predicament -- reconstruction. A large percentage of reconstructions, no matter what the method, are entirely and wonderfully successful. However, a smaller percentage, while not completely failures, lack the carefree features that nature bestows upon women. Actually, to be honest, even women who count their reconstructions (or lack thereof) to be successful are not always as pleased as they were before cancer struck them.

Again, I tried to make light of these problems. Using the term "foob" instead of implant or reconstructed breast was one way. Focusing on the vanities associated with breasts was another way of making light of the decisions and difficulties I've had. I am not my breasts, foobs or otherwise. I am a whole person that has been made physically less (since I lost quite a bit of breast tissue as well as ovaries and my uterus). However, I try to remain up-beat. I don't want to whine. I don't want sympathy or pity. Heck, sometimes I really don't know what I want except to be normal.

To be honest, a portion of my concern originally was image-related. I did not think I would look like a woman with implants. However, at this point, my complaints are physical. Its not that I have no sensation and the appearance of my implants (and chest) is undesirable; its that I'm in almost constant pain from them. They are heavy and pull at my collarbones, neck, and shoulders. They shift and create tension in some of my muscles. They don't move like natural breasts because they are encapsulated instead of free tissue. The implants themselves aren't the only problem. I also lack the natural 'cushioning' the body has on my breastbone. With two young children, elbows, knees, fingers, arms, heads, etc flail around and strike my breastbone with painful regularity.

4) Having cancer does not mean other aspects of your life gives you a time-out. No, bills continue to be due (and mount to extravagent sums). Children continue to need care and their needs are ever-changing. Jobs require consideration -- especially if that job is responsible for the family's health insurance and financial security. Other family members have their own catastrophies. Other catastrophies can fall upon the patient as well. So even if cancer was simply a short-term ailment, life does not stop to let you recover. In reality, an entire life is affected. That life affects other lives -- families, friends, co-workers, and even strangers. Cancer is like a domino game -- the outcome can be beautiful when viewed from a distance, but devastating to those being knocked down one by one.

5) In a previous post I detailed what survivorship meant to me. I can't remember (chemobrain) if I mentioned that every cancer patient I've 'met' simply wants to be 'normal' again. It's not that we want special status of 'survivors' or to remind everyone of our infirmities. It's that we (or at least I) want to be like I was before. A woman. However, (at least for me) each time I feel the weight of my implants pull me down, each lost memory or word from chemobrain, each time my fingers and toes burn or lack feeling, etc I am reminded of what I am now as opposed to what I was 2 years ago. Honestly, I wasn't entirely happy with my body (vanity-wise) 2 years ago. However, at least then I could stand in front of the mirror and know that everything was God's body design for me. Now if I stand in the mirror, I see scars and cancer consequences. Heck, I can't even look in the mirror at myself au naturale because I have to wear a bra 24 hours a day 7 days a week or else feel pain.

6) I know that everyone changes, sometimes in good ways, but sometimes also in bad ways. Most of these changes are expected and gradual. I have people older than me constantly telling me something like, "Oh just wait, you're going to gain weight, you won't be able to do this or that, you'll lose your memory, your breasts will sag, or whatever." A lot of times, this is said almost gleefully (at least that's my perception), as if the person has already experienced these changes and simply wants me to suffer the same way they are. The same thing happens to pregnant women. Stories come out of the wood-work about horrible morning sickness, late-term miscarriage/stillbirths/fetal deaths, immense pain with delivery, etc.

This 2 year journey for me has been nothing but unexpected and sudden. Unlike the pregnancy (and aging) stories of woe, you seldom find cancer patients talking about how horrible chemo or surgery is with new cancer patients. Most frequently side-effects are glossed over by declaring what a wonder drug XX is or by saying, "You'll look just as gorgeous without your hair." Seldom do cancer patients waiting for chemo share their constant nausea, vomiting, diarrhea, neuropathy, severe bone aches, etc with others in the waiting room. Nor do patients coming in for their 4-month, 6-month, or yearly check-up list the side-effects of their treatments they still suffer. This is a good thing, but it is also bad because in my experience, it fosters a false sense of security. In a way I was tremendously lucky and dealt with my chemo better than mom. However, I was also unlucky in other ways. There is NO way to predict who will suffer from this or that. Nor is the onset of these issues gradual. You begin treatment and immediately you experience some of the side effects, while others (like hair loss) don't become obvious until weeks later.

In essense, just because I am a 'survivor' does not mean my battle is over. I still face sometimes insurmountable issues that are not obvious. Every cancer survivor has their own scars and continuous battles they face. While we want to be just like everyone else, in the back of our minds is always the knowledge that we are not - we will always have to fight something that came from this disease. However, once we are 'cancer-free' the public loses interest in us. We are no longer brave warriors. We are just survivors. I'm sure military veterans, other disease survivors, etc feel the same. I can't speak about them, I can only speak for myself. Treat me as you would have prior to my diagnosis, but know that just because I'm winning doesn't mean the battle is over.

1 comment:

  1. Wow! That was very powerful and well put. I'm right there with you. When your cancer becomes something in the past for everyone else, it's still very much a part of who you are. Survivors have survived but they haven't conquered. They are fighting, but they haven't won. And the battle is long, hard, and somewhat invisible to the outside world. God bless you and your daily struggles. I am very glad that at least you have this outlet for your deepest thoughts and feelings!


My Chemo-Jane hair-style

My Chemo-Jane hair-style
I just had to have my mom buzz my hair because it was falling out so badly.

Pre-op wearing my hand-crocheted cap with my prayer shawl.

Pre-op wearing my hand-crocheted cap with my prayer shawl.
My loving husband is watching me distract myself with a game on his iPhone.

2 days after my BMX w/ 100ccs in the TEs

2 days after my BMX w/ 100ccs in the TEs
I even have a fashionable belt to hold up my drains.

3 weeks post-op w/ 400ccs in each TE

3 weeks post-op w/ 400ccs in each TE
The smile is fake because the TEs were irritating!