Thursday, September 22, 2011

My Cold Hard Truth

I have a few things on my mind that I'd like to vocalize. Er, uh, type, for the benefit of those closest to me, who ironically will probably not read this anyway. 

1. I STILL have Stage IV Metastatic Breast Cancer. And it's STILL incurable.

Okay, I put you all through that whole  thing in the hospital right after that diagnosis, and I'm sorry for that, but the diagnosis stands!

No, I was not, at any point during the past 2 years, "in remission". Sorry to fool you all with the months of seeming functionality. Sorry for having hair and fooling you all by not looking like I have cancer.

I'm still here at the 2 year mark. The length of time I have lived with this disease is in no way a signifier of how much longer I will be able to do so. There's no magical magnifier formula adding months or years to my life for every month or year I manage to live with cancer.

2. The Tables can Turn Quickly.

I did well this past year. Tumor markers were relatively stable. Scans were good. No spread was found.

My tumor markers, however, specifically the CEA, have risen over the the past few months.

This is not a good trend. It could be from my stint on Aromasin, trying to avoid the monthly weight gain of Femara, or it could be an increase in activity because the Cancer Cell Committee (The CCC) inside my body voted that it was time to get moving again, regardless of aromatase inhibitors.

Just because the hormonals have worked for two years doesn't mean they will keep on working for another two years. Hormone blockers are the first line of defense where bone metastasis is concerned. Eventually, they will fail, meaning that eventually the cancer will again start to spread. Then it's on to the next one. I have a couple of hormonal options left if my return to Femara is unable to bring that number back in line. When the last of those fails, then it's on to the "Hard Stuff"...chemotherapy.

Then we run through those until they all fail and there's nothing left to try.

The cascading failure of treatments can begin without warning, with no relevance to how many months or years for which they worked.

Don't file me in the "doing fine" compartment in your mind because I have done relatively well for a while.

3. I DO need help, and will need MORE as time goes by. Don't judge me.

I openly admit to never having been an organized, tidy person. I was never an organized, tidy child. I wish to say to my family that it hurts my feelings that this is seen as a defect. It's who I am, and how my brain works. We can't all be Martha Stewart, no matter how much we admire organization.

That being said, working full time plus commute while trying to fit in everything else that goes along with being a single parent made any attempts at Martha-dome even more difficult for me.

I know my (extended) family just sees me as a lazy slob, and judges me as such.

I know that now I am home, all day, every day. I think that in the eyes of my (extended) family, I now have all the time I need to whip this place into picture-perfect shape.

Yes, I have time.

What I don't have are physical energy and pain-free stamina. Oh, and money.

It hurts my feelings that because I was never able to keep up with keeping  house then, my family assumes that I therefore do not need / deserve / merit any help in doing so now.

The backward and illogical idea that a woman with one child and no husband somehow needs less help than a woman with four children and a husband is insulting and hurtful. Sure, no one says that out loud, but the fruits of that thinking are manifest in my community and family.

That this same woman with one child and no husband is now living on 50-60% of her previous income, with mounting doctor bills that will not end due to the cancer that will end her life still does not need the same help offered to a healthy married person is ludicrous.

It hurts my feelings that, rather than help out a little, even 15 minutes a week, my own mother and siblings avoid my house.

It hurts my feelings that my mother bends over backward to help one sister, and shuffles me to the back of the line.

I don't want to sound ungrateful, however, and would like to acknowledge the generosity of my other sister, who thinks of me when she has extra food, and who unselfishly gave me her fabulous white fridge when she upgraded to all stainless in her kitchen.
I don't think any of them read my blog, but just in case, I do appreciate her generosity.

4. Don't look at me like I'm fat and should or can do something about it.

Yes, I am fat. I have struggled with my weight since puberty, constantly through my 30's and increasingly so in my 40's.

Then in my early 40's, I started this cancer ride. Now at 47, that cancer is not going away; the treatment for which, and limitations therefrom now make it pretty much impossible to avoid gaining more weight, let alone lose any.

My feelings were very hurt by the implicated suggestion from my own mother yesterday that I should be getting out and walking. This as I am struggling through a shopping excursion through Walmart, leaning on the cart, gritting my teeth through increasing pain and fatigue.

Stop blaming my weight on lack of exercise. Stop blaming my weight for my pain and lack of stamina. Maybe that was true five or six years ago, but now it serves no purpose, and is not entirely accurate.

I have a tooth I have wanted to have pulled for the longest time. The crown was ill-fitting and it bothers me all the time. Currently I have a cracked tooth that also requires a root canal and crown.

Since I have been treated with bisphosphonates for cancer on my bones, I am at HIGH risk for the development of osteonecrosis of the jaw (ONJ) should I have any dental surgery or trauma to my jaw bone. Necrosis means death. Dead bone. No resurrection possible. To me, this would be worse than the cancer itself.

So any teeth with which I am displeased, I am unfortunately now stuck. If my teeth start to shift because the Wisdom teeth I never had removed decide to start changing position, TOO BAD. I am stuck. I cannot have a tooth pulled.

PC (pre-cancer), I would have said, if this cracked tooth is cracked and moving because the Wisdom tooth is pushing on it, let's pull this cracked tooth and let the Wisdom tooth and neighboring molar go ahead and shift, and try to fill in the space. It would be a simpler extraction than the impacted Wisdom tooth, and be cheaper than a root canal and crown. 

Thanks to cancer treatment, I no longer have that option.

I have the same teeth I had before cancer, but I had different options for them, before cancer.

I have the same body composition that I had before cancer, but I had different options for it, before cancer.

Don't judge me for my body composition, any more than you would judge me for my dental shortcomings.  I'm stuck with both at this point, thanks to this cancer.

5. Yep, Metastatic Breast Cancer is still aiming to kill me.

I know I was obsessed with death shortly after my diagnosis. I talked flippantly about dying quite a bit. I lost social invitations as a result of that phase of my coping.

That's what it was - my way of coping and coming to terms with the prognosis attached to my diagnosis. The prognosis nondetachable from my diagnosis. 

I don't talk about it a lot now, like I did at first. I know that makes people around me more comfortable, but that's not why I stopped talking about it. 

Talking about it was a part of ME being able to accept and be at peace with it. If I was annoying because of it, I apologize. If it made you uncomfortable, too bad. Too frickin' bad. I'm not here to make others more comfortable with MY CONDITION by sugar-coating it or keeping it to myself. 

I do my best, however, to get to church on Sundays and serve and participate. Don't be fooled if I look good. I still have this cancer that is not getting better, even under make-up and a good hair day. 

I have a realistic acceptance of my prognosis now. If that makes you uncomfortable, if you judge me as negative, or silently accuse me of not having a positive attitude, I will cut you out of my circle first, before I try to fake what makes others feel more comfortable.

On the other hand, sorry to keep looking so deceptively capable most Sundays, and not dragging myself around on Sundays looking like I'm on death's doorstep. On Mondays, I recuperate from Sundays. Sunday is my big spurt of what energy I can muster. I drag around the rest of the week. But I still have no desire to actively work at eliciting sympathy, patience or understanding.

I'm not on death's doorstep, but I am on the sidewalk that leads up from the street to that doorstep, and there really isn't space for a U-turn.  I won't talk about it every time you see me, but don't mistake that for me being "OKAY". 

I shouldn't have to remind you that I DO still have cancer, and it WILL eventually kill me.

And while we're on that vein, I HATE the BUS any of us could die tomorrow being hit by a the Mythical Bus. Yes, we are all dying...literally progressing toward death from the moment we are born. Some of us will live to a ripe and probably annoying old age. Some of us will be cut short. MOST of us will not have the advanced warning that the bus has turned onto our street and is gunning for us, whilst we become increasingly unable to jump out of the way, and despite the increasing money spent on that new crosswalk and reflective tape. 

To that end, the next one of you who gives me that damn bus scenario will be flipped off and kicked in the shin. 

I swear I will do it. 

Don't push me on this one.