Tuesday, January 25, 2011

Beast Chthulu and bone metastases

In answer to a friend who wants to take me to the "new body store"..

She says, "I am familiar with lymph glands...but I'm not familiar with hilar. Where and what are those? So I am tactless enough to ask, what will the cancer moving into the bones do/mean? Is this unusual or par for this kind of crap? Are you in pain from any of that? I know the chemo is doing a real number on you.... God Chris, I know it's been said again and again, but this is all so unfair. I wish I were out there and could help you and yours in some way. My love and thoughts are with you.."

Hilar lymph nodes are around your lungs and trachea. The lymph nodes are trying to keep the breast cancer cells from moving into other organs, like lungs and liver and brains, so they are doing their job - but they get bigger as they try to fight cancer. (Poor immune system, it never gets a break.) There's now enlarged lymph nodes along my collarbone, down along my trachea, and a couple of other spots where they are doing their level best to contain spreading cancer cells. The human bod is an amazing thing.

Bone metastases can be nasty because they can apparently get very painful. Mine are currently small enough that I wasn't really experiencing any pain, and we caught it fairly early. Here's a cool thing - bones are being eaten up and replaced all the time. Osteoclasts and osteoblasts, respectively, remove old calcium and make new. Who knew? The drug I'm taking (not chemotherapy) partially blocks the osteoclasts, so the bone makers get to work overtime. Chemotherapy kills the cancer cells, osteoblasts come in and make me some new bones.

Breast cancer tends to be "responsive", which means a high percentage of people have their cancer go away or decrease from a lot of different kinds of chemotherapy. I still have many choices, including some new ones, Gemzar and Xometa, and then heavy metals like platinum, and thalidomide, or I could repeat adriamycin. All poison, basically, so all have side effects, and that's the yucky part.

Sweet pea, everyone has to die of something. I will probably die younger than I want to, but doesn't everyone? OK, my grandmother was 94, and I think she felt as though she got fair innings. My mom was 61, and certainly we didn't think she got her fair amount of time. We are just all hyperaware of it in my case because I have a nasty, chronic, incurable and ultimately fatal disease. But it's also just scary because our culture finds it scary. Cancer is loaded with societal mythology, way more so than heart disease, even though heart problems are more common. Part of it is that from about 1940 when cancer started to get more common, until about 2000, cancer death rates were climbing - so it's still considered a death sentence, when it's really not, any more than HIV is. So for our parents' generation, it was something people whispered about.

And don't get me started on the pink ribbon brigade. The message that if I had just been perky enough and pink enough I would have "beaten" my cancer is not, shall we say, a useful message. There's 130-some odd women with metastatic breast cancer in my online group, and to a woman, as far as I can tell, we all HATE breast cancer awareness month. We are the invisible survivors - not members of that club. But nobody dies of stage two breast cancer. Everyone whom it kills, dies from metastatic cancer. Makes you wonder why only 5% of the research money is spent on this stage. Follow. The. Money. Astra Zeneca is making a fuckton of money on, you guessed it, tamoxifen. Prevention? Hell with THAT, when we can make money off of those lucky 1 in 7 women who will have breast cancer in their lifetime.

begin rant - If you give money to a cancer charity, PLEASE make sure they discuss prevention in their propaganda, NOT a cure. If they only talk about a cure, dig down, and I'll bet you they are at least partially funded by a drug company, and insurance company, or both. Susan G. Komen is. WhyMe? is. Thank you. end rant

We, American adults, are still more likely to die of heart disease than anything else. Canadians, interestingly, are more likely to die of cancer. US is 1) heart disease, 2) cancer, and 3) diabetes. Canada is 1) cancer, 2) heart disease, don't ask me why. Differences in the health care systems, I suspect. Here if you can afford it, you can get more and fancier cancer care, and the US has a slightly lower death rate, something like 29% as opposed to 32%. Most first world nations hover in the low 30% for overall death rates from cancer. But a diagnosis of heart disease isn't nearly as scary as cancer. Why? The illness, not the disease. Our ideas and beliefs about cancer, not the actual fact of cancer and cancer treatment, or survivability.

I don't plan to croak any time soon. Think of it as diabetes, something that is being treated, and the treatment is sort of nasty, like I'm sure dialysis is. It's not exactly parallel, but it has similiarities.

Love to all,

Saturday, January 22, 2011

The ongoing saga

Dearly beloved,

I started a new round of chemotherapy Friday. The cancer has shown up in four new hilar lymph nodes. In addition, the PET scan shows that there are now bone metastases, small areas of cancer growth in my spine, ribs and hips. So along with the chemo, which should stop this progression and hopefully reverse it somewhat, I'll also be getting another drug which helps the bones get stronger again, called Zometa.

I'm repeating the same chemo I had last spring, and I'll be tested in about six weeks to see if there's a response. If there isn't, I'll switch to a different chemo regimen, something called Xeloda. (gotta love these names...) If you are a science geek, the latter one turns from 5’-deoxy-5-fluorouridine to 5-fluorouracil in my bod. I'm hoping it will give me magic spider powers, or at least make me glow in the dark.

By the way, are you allergic to hamster protein? I challenge anyone who has not done chemo to know the answer to this question BEFORE you are exposed to paclitaxel NAB. "Yeah, you know, every time I chew on a hamster my lips swell, and I get all short of breath! Who knew?" Pacletixel -NAB stands for "nanoparticle albumen bound", and the albumen it is bound to comes from hamsters. Maybe instead of spider powers, I'll get magic hamster powers, whatever THOSE are.

I am tired, and fairly deep in my cave. It's hard to express to someone who has never dealt with a chronic, incurable, progressive disease the amount of stress we are under, nor what an emotional roller coaster it really is. Kevin is exhausted and thin, vulnerable to every cold and flu bug going around. Not to mention starting a new job. I'm working, and find that I often go in at odd hours, so I don't have to chit chat - I want to go in, work, and then come home and rest and be with my family.

I think sometimes people coming in from the outside are horrified by what stress cases we are, but at the same time, I long for understanding. Lately, my answers to "How can I help?" are...Drop off a meal; fold laundry; take Kevin out for a walk; and sit and listen to us talk (vent) for half an hour, and try to get into my world. Planet Cancer is NOT your world, but sometimes it's too much effort for me to act as if I'm in yours. Every once in a while it's really useful to have someone try to walk in mine. The few people who have done this, I think, have a far better understanding. Interestingly, MOST of them also are living with chronic disease, if not cancer. Maybe that's the only way to make the jump into wanting to understand.

Wednesday, January 05, 2011

Visiting metastatic cancer babe

Wrutten by another person in my metastatic cancer babes group. Brilliant, and to the point. Reproduced here with her permission.

To my very supportive Family,

I thought I would send you all a note just to let you know what is going on and why I may seem out of sorts and short on patience. On top of all the regular craziness of raising four kids, working and having a husband that travels all week every week, being diagnosed with an advanced cancer takes the stresses of life to a whole new, different level. I’ve experienced things and have felt emotional highs and lows like I never could have imagined. Let me try and explain where I am coming from.

Where to even begin? How do you try and explain to the world that you are doing ok and doing more than all the right things, and you can still have days where you are frightened beyond words and have absolutely no patience and feel like you can blow at any moment? Its not easy living with a disease that kills people daily, and the uncertainty of its behavior can literally drive you mad if you let it. I try and find the positive and the humor in all that I do, but there are going to be some days where I just don’t have it in me. AND THAT NEEDS TO BE OK....some days I NEED to be in that bad place and to face those horrible thoughts and feelings. It actually is quite normal and down right therapeutic to be there. I think the key here is that when I’m there, I don’t need a pep talk. Unless you’ve squirreled away the cure, there really isn’t anything you can say that will change the way I am feeling in that moment. I’ve seen and heard one too many stories about people declining and/or dying from this disease (or any cancer for that matter) and I wouldn’t be human if they didn’t affect me. I know their stories are not mine, but trust me when I say, you can’t help but think if that is going to be what happens to you.

What I need is just for everyone to listen and let me get it out. I know what I need to do and I know that I am doing everything in my power. So, what I need in those times is validation and someone to just tell me that, “You are right, this really stinks.”. or “I can hear your frustration and I don’t blame you for feeling like that...”.

I can’t imagine what it must be like having to watch someone you love struggle through all of this and have not one ounce of control or power over what its going to do. Not that I have any more power than you, but at least I know how I feel just based on being in my body and knowing how I literally feel day to day. Watching has got to be beyond maddening. They do say that Cancer is a family disease because it does truly affect everyone in the family in some way.

I know I make this look easy, and for the most part, it's not that bad. But there are going to be days when I am not myself and have little patience. I’m doing my best to find a way to ease those times, but its not always easy. Right now, the stress of having my numbers on the upswing from last month has had me on edge for weeks now. I feel like I’m questioning every single ache, pain, and weird sensation that I have wondering if its cancer related or not. My poor children have seen me blow my stack a little bit too often lately. I hate that I can’t always control my frustration and let something they do be the push that opens the emotional gates. Bryan said to me the other day, “Mom, the next time you get upset with us and yell, could you please watch your language...”....it actually made me laugh, which is probably a good thing...who would of thought my kids would be my moral compass...

Tuesday, January 04, 2011

When did I lose my brave little soul?

When did I lose my brave little mind?
Cancer erodes me, small losses I find
add up, I am not the person today,
Whose mind once sang bravely as I rode away.

When did I lose my brave little soul?
Each time I fight but I've lost the whole
The future feels short, I don't plan ahead
I just stumble forward, my heart filled with dread.

When did I lose my brave little heart?
I don't remember if I felt the start
These changes are quickening, slippery slope
I don't yet give up, but I've given up hope.

I've lost them, I miss them, I sense the the tears' toll,
When did I lose my brave little soul?

For Susan Chung
from a line from her poem
"When did I lose my brave little heart?"