If you follow any number of higher profile cancer warriors - from bloggers to doctors to celebrities - you may have heard about the articles that appeared in The Guardian (now down) and the New York Times by a married couple of "journalists" - a term I use very loosely for the Kellers. The wife got information from a cancer blogger via private messages with or without full disclosure that they were not only the subject of an editorial, but that it was using her blog as a means to "debate" the "ethics" of blogging about one's cancer journey, particularly if the end is sooner, and more grueling, than one might hope. It was a despicable piece. What was worse was that the "author's" husband then, in the New York Times, essentially re-wrote his wife's article, even admitting to loosely "perusing" the cancer fighter's blog, and stating that because his father-in-law died one way, it was "unethical" and "unbecoming" to share one's journey any other way.
I lost my mind. I really did.
I'm not going to speak for all of us cancer fighters that choose to share our journeys and fights through blogs and the like. I'm going to speak for myself, because I know there are a lot of folks out there who feel the same way, and to educate the morons like this husband/wife pair who, rather than ask why, suppose they know best and then impose their beliefs as the moral standards.
First, I was a LIVESTRONG Leader first, which meant that my involvement in the cancer community was that of a leader publicly. So, it was natural that I share my fight in the same manner - it would have been hypocritical of me to be asking those fighting cancer in my community to come out and talk about their journeys when I was silent about mine.
Second, from a practical standpoint, I have friends, families and colleagues all over the world. However, I only have one set of hands, one mouth, and two phone lines. Unless I had absolutely nothing to do all day but to call, email, write and Skype with every individual that wanted to be kept up to date, I had to find a more universal means of letting folks know what was going on - my blog accomplished that. My fellow LIVESTRONG Leaders, high school friends, college buddies, family, colleagues etc, could simply check out my blog if they couldn't connect with me, and I could rely on that one outlet to share the basics. Obviously, I spoke with folks in other forums as the relationship and events dictated, but this was a resource for anyone to check in and catch up.
Third, there were days when I didn't want to talk to anyone. There were days I didn't want to see anyone. There were days when I didn't want a dialogue - I wanted a monologue. I was too uncomfortable to have the patience to deal with responses. I wanted to just get things off my chest, share my thoughts, and that was it.
Fourth, I didn't know if I was the only one who was experiencing what I was experiencing. I shared things I lived through hoping to get more experienced cancer fighters to respond with advice, information, etc. And it worked.
Fifth, I did it to share so that other women who were diagnosed similarly knew what the general path could be like, in a non-clinical fashion. I wanted to share the funny experiences and thoughts I had in hopes that I could make someone going through this farcical situation laugh when they needed. I wanted to share the absurdity so that I could waylay someone else's fears.
Lastly, I honestly wanted to lay down in writing what I was thinking in case a) I forgot what my journey was years from now, b) the cancer and treatment didn't go well and affected my memory, c) I needed to document what tests and treatments I had in case I had to provide a doctor my medical history for future treatments and d) in case I didn't survive my cancer, my children could read in their mother's words what her journey was. I wanted to leave a legacy of my voice. I wanted to tell my own story so they wouldn't have to try and remember on their own.
I assure you, if my tale ended grimly, I would have continued to write just the same.
You do not have the right, however, to judge how I share my cancer story. You have the right not to read it, you have the right to say that you wouldn't do the same. But you do not have the right to tell me that what I am doing is not "ethical." Keeping silent is unethical. Judging a woman who is dying and is reaching out for support is unethical. Talking about the realities of this disease is not.
Good for you, Lisa. So many of us have your back.
Tuesday, January 14, 2014
Thursday, January 9, 2014
In the week or so it's taken me to recover from the emotional roller coaster my "Big C" Marathon caused me, I think about what a friend reminded me when I expressed my reborn anxiety - "But, Rica, you're 'Cancer Free.'"
I will never, EVER be "Rica" - with no state of cancer at all. State 1 will never exist for me again.
I try and remember what tasks I have to do today, and I find that I can't remember what they are. I take a minute and try and remember what day of the week it is. I have to resort to peeking at my iPad or iPhone to check the calendar. Since chemo, I still find that I have trouble remembering which day of the week it is. (Sorry, Dr. Tepler, you can't tell me there's no such thing as chemo brain.)
Is there ever such a thing as being "Cancer Free?" It's not like I'm a can of soda - when I have zero sugar in my ingredients, and there is a governing body that approves of the label, and I'm declared "Sugar Free," therefore I feel sugar free. I would just BE sugar free.
The trouble is, I remember what it was like to truly BE Cancer Free.
Maybe it's a little more like being decaffeinated coffee - I once had caffeine, but it has been stripped out of my being. Caffeine was inherent to my being coffee, but after an extraction process, I'm now lacking my caffeine, left a sad, watery shell of who I used to be.
So would that really make me "Decancerated Rica" as opposed to "Full Strength Rica?"
Still, no. Because the coffee only went through two states - Caffeinated, then Decaffeinated.
I actually went through FOUR states - 1) Rica 2) With Cancer, Blissfully Unaware Rica, 3) Full-on Cancer Rica, 4) Now "Cancer Free" Rica. But, note, State 1 does NOT equal State 4.
I will never, EVER be "Rica" - with no state of cancer at all. State 1 will never exist for me again.
I have been permanently changed. I have the scars to prove it. There isn't a morning that goes by when I am not immediately reminded of the fact that I had cancer in my body. Reminders surround and are within me. From the fact that the house has been under 60 degrees every morning I awake this week since the polar vortex came into effect and, while I have goosebumps all over my body, my breasts are just there and my nipples no longer react nor do they perk up - because they are numb chunks of thigh skin, tattooed in a faded pink. When I rub my eyes, and begin to scratch itches on my shoulders, and I brush against my cleavage, the skin on the top of my right breast senses my finger tips normally, but on the left side, there is an irritating tingle, barely cognizant of the fact that it's not an unpleasant scrubbing action triggering a response, but a gentle touch.
My bones and joints ache more than ever in this chilly weather. I cannot tolerate cold the same way I used to before chemo. While I was always a "Summer Baby," and I hated Winter, I could endure it. My elbows didn't ache from the core. My knuckles didn't stiffen. My spine wouldn't surge with prickly cold. But it does now.
Once in the shower, I realize that I really don't have to do a self-breast exam anymore, even though it's become second nature. Instead, as I begin the futile, and irrelevant exam, I feel the horrible horizontal scar that I had assumed would have completely disappeared on each breast where my areolae used to be. I feel the strange pucker around that line, so the breast skin doesn't hang correctly on the lower right half of the right breast, and there is still a tough, thickened patch of subsurface scar tissue on the inner side of my left breast.
As I sit on the commode, facing the cabinet with glass doors in which I kept my feminine products, I see the package of maxi pads I'd picked up right before my oopharectomy, out of habit, forgetting that just a couple of days later, would become irrelevant and would sit dormant unless a visitor needed one, or my daughter has her first "visit from her cousin." I see the last of my tampons, which haven't budged since April.
When I make it back to my room, and I sit at my vanity, I measure the length of my hair. Now, it's just tickling my shoulders. I pull at the longest piece and measure to see how long the curl now unfurls, and to see if it hits my shoulder blades yet. I shake my head, as I still have a way to go. I reach back and see if I can reach the back of my hair. It's nowhere to be found. I have at least another year to grow my hair to the length where I felt comfortable.
I look in the mirror. My eyebrows have grown back, and they are starting to get unruly. But I'm scared to tweeze them. And, now that they are back, I find I can't pencil them in as well as I used to when there were no hairs there. Ironically, my eyebrows look far less realistic now when I try and do them than they did when I had no eyebrows.
I see a double chin where there wasn't one before. I see a puffy version of myself. When I started chemo, I was told to eat when I could, as likely, I would lose my appetite. Ironically, of all the cancer patients I knew, my appetite never died. In fact, I ended up gaining weight. Whether it was from the steroids I was put on heading into chemo, the fact that I was pretty much "benched" from physical activity after I tore mastectomy souchers and gave myself an infection, and never recovered from the atrophy that induced, or that my energy post-chemo has never recovered, I am in a terrible physical condition.
For the first time in my life, I'm not physically fit. I was never a twig, but I was always fit. Not since chemo.
And, at this point, it isn't even a full hour since I've awoken, and I've recounted how many reminders that I had cancer?
How can that be called "Cancer Free?"
This year, I will be "Cancer Free" in March. Oh really?
So, here's what I've realized:
I don't care if you survived the surgeries and treatments a day, a week, a month, a year, or a decade ago - we are never "Cancer Free" again. We may be "Decancerated," but we'll NEVER be "Cancer Free" again.