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|Sunday, June 11th, 2006|
Karen Anne Heinzeroth
September 25, 1973 - June 11, 2006
Please see my journal (blakeh
) for more about Karen. Thank you.
|Monday, May 22nd, 2006|
Hi there. This is blakeh
(Karen's husband). Karen is currently in the hospital and has no internet access, so she wanted me to link to the latest post I made about her current situation. You can read it here
. Thank you.
|Sunday, May 14th, 2006|
|Finally! I've got access to one of the Internets!
Okee dokee. We finally got our Internet service back on Friday, but unfortunately I've been too sick to do any updating or anything. I haven't even checked my email in--get this--ELEVEN DAYS. This is a personal slacking record for me. God, when I think back to when I was working...I was lucky to go thirty seconds without glancing at my inbox. Now...I have to say that I am seriously thinking about unplugging everything in my life now (except LJ, of course!) and going back to the good old days when you actually had to pick up a phone or walk over to someone else's house to visit. I am really enjoying NOT having email at the moment :)( What"s Happening in KarenlandCollapse )
|Wednesday, May 10th, 2006|
|Alive and Kickin'
Due to the shitty internet service provided by Insight here in Rockford, I have been unable to access email and LJ since last week. Proper service is not intended to be restored until end of this week (ha ha...don't hold your breath).
I managed to sneak two minutes in here at Blake's office just to say hi and that things are OK here. Hope all is well everywhere else!
|Thursday, May 4th, 2006|
Bleh. I feel like warmed over dog food today. I don't really know what that means other than it's my way of expressing that I feel all squishy inside...you know, like when you're coming down with the flu and your entire body has that really langourous feeling to it, like all of your connective tissue is made of Play-Doh.
I had an absolutely spectacular day on Tuesday, but then yesterday things began to go downhill. I DID manage to get up in the am and go to the farmer's market over at Edgebrook, which ended up being a huge disappointment. Yesterday was the first day of the market, and as usual not a lot of vendors were there. The ones that were there were all selling plants and flowers, which is fine except that Blake and I have the fortune of having a yard that is completely full of overgrown perennials including about five dozen hostas, each of which grow to the size of a small car.
So I came home empty handed and disappointed. Oh well. In about two weeks I should expect to see some fresh cherries and strawberries, so here's hoping I can make it over there then.
Anyways, after I got home I felt really, really tired so I went upstairs to take a nap. Over the course of the day things got worse. My head began to ache like nobody's business and my limbs began to hurt all over. Around 3 pm I began to run a temperature around 101. I took some ibuprofen, but it only dropped it to 99.6. And even though I was tired, for whatever reason I just could not sleep. I was kind of just drifting in and out of consciousness for most of the day, feeling very confused and getting very dizzy anytime I would move around.
On the FLIP side, though...my abdominal pain has been vastly improved lately! I can handle fatigue and listlessness and all that...pain, though, is a different thing. It's really, really nice to have a break from it.
Other than that, not much going on. It's a gorgeous day and I'm enjoying the nice breeze from my window. Life is good.
|Tuesday, May 2nd, 2006|
Ok...drum roll please...
I ACTUALLY GOT OUT OF THE HOUSE TODAY!!!!! Woo hoo! I met Blake for lunch, ran to Walgreen's, ran to the pet store to pick up our special "medicated" cat food (yowza on the price!), and then decided to treat myself to an ice cream cone at Dairy Queen. You know, I've got to say...one of the best silver linings to come from dying is the fact that I no longer care about what I eat. I mean, don't get me wrong. With the current state of my GI tract I'm doing my best to make sure I eat enough fruit, vegetables and other fibrous foods, but this whole line between "good foods" versus "bad foods" has completely eroded for me. Eating has taken on a completely new meaning and let me just say...NOTHING in the world makes food taste better than when you remove the guilt from it!
So, yeah. It was a damned tasty ice cream cone. Probably the best one I've had since the day I hit puberty and became body-conscious.
So today's been pretty good so far. It seems like I've got a 3:1 thing going here. Three days in bed yields one day of feeling decent enough to have a life. Not a great ratio, but hey...if it holds true then at least it will make it easier to plan things in my life.
Like the ERASURE
concert that is happening in only SIXTEEN DAYS. I haven't had a chance yet to talk about it much because I've felt so lousy, but trust me...it's what's keeping me going at this point!
And to honor my enthusiasm, I'd like to offer yet another shameless plug for all of you to go out and buy Erasure's latest album, Union Street
. Seriously good stuff, even if you are not a die-hard fan. You can also read a short review of the album here
I still haven't made any sequined hats for the occasion being that my hair has not yet fallen out from chemo. In fact, the hair loss that I was having on the Taxotere has IMPROVED since going on the Doxil. Can you believe that? Watch...I'll probably be the only woman in the world to go through eight lines of chemotherapy and not go bald (and yes, I know I just jinxed myself by typing that). Not that I'm complaining about this...it's just that it's so ironic, with my OCD past and all. Anyways, because of this I have been remiss in making the hat that I'm going to have to eat in ethel
's presence. I suppose I better get to work on it, as I don't want to get the reputation of being someone who welches on her bets. ( Just some ramblings...nothing important, really. I"m just bored.Collapse )
|Monday, May 1st, 2006|
It's Monday and the weather is lousy and I'm behind on comments, emails, phone calls, thank you cards for the wedding, shopping for baby gifts, and just about everything else in my life. Bleh. I hate being behind in these things.
Oh, and today is my "Cancerversary." It's officially been four years now since the "phone call that changed my life" (or whatever cliche you want to call it). I suppose I'm obligated to say something profound about it like I do every year, but eh. It's kind of like October 31, the day my Mom died. For the first few years after she died I memorialized that day out of some sort of obligation that it was expected of me or something, but after the grief and novelty of her death began to fade the date became once again just another date on the calendar. That's kind of where I'm at today, and it's nice.
So no cancer lecture today. Instead, I'd like to turn this day on its head and take the opportunity to say the following to everyone:
Thank you for your friendship over the years. I first began my LJ as a simple little project to document my cancer and it was something that I never really expected would go beyond my own entries. I never thought that it would bring me the opportunity to meet so many wonderful people in the world. I am humbled by all of your lives, and there isn't a day that goes by where I don't learn something from each and every one of you. I deeply, deeply admire you all for your honesty, your compassion, and your acceptance. Through your words, you have made my life better and you have made ME better, and as far as I'm concerned, that is one of the greatest gifts that you can ever give a human being. If there is nothing else that you take from my journal or from knowing me, please at least take this: you have made a difference in my life, and it is good.
So in honor of May 1st, please accept my sincere gratitude that you are in my life and have chosen to share some of my experiences with me. It truly, truly means a lot.
(P.S. also please know that there is no need for anyone to comment back to what I've just written...I just wanted everyone to know how I felt).
I do have a small health update to post today as well, which actually has some really tentative good news in it.( Health UpdateCollapse )
|Saturday, April 29th, 2006|
|Monday, April 24th, 2006|
|In the Mood
"Hey baby, it's a quarter to three. It's a mess of moonlight, won't-cha share it with me."
Ok, so I'm no Glenn Miller. But consider his lyrics my little way of inviting you to read this post...which, as you might guess, is being written at 2:45 in the morning. Gotta love insomnia.
I know most people read my previous post (I'll get back to everyone's comments tomorrow) and probably figured that I've been spending my time wallowing in some anger and such. That actually wasn't the case. I was in some serious need of venting and just had to get that out this morning. It's a long story about what prompted my previous post, but suffice it to say that that has been simmering in me for a while and was based on a conglomgeration of things that people have been saying to either me or to Blake for a few weeks now. I hope no one took it personally, as really it was just something thrown out at a generalized "you" population. Some of it was directed at how mainstream society tackles the issue of death, but most of it was really directed at only a couple of people in my life who, over the course of time here, have just rubbed me the wrong way with some of their comments. Regardless, it was just some venting...and man, did it feel good to just belt it out. Journaling can be so cathartic sometimes.( Read more...Collapse )
|Sunday, April 23rd, 2006|
|Social Truths and Consequences
8 am on a Sunday morning--and what a gorgeous day it is so far. I love mornings like this, when the dawning sunlight is so clear and so crisp that it makes you want to drink it.
I started sleeping in our "library" several months ago after I realized that I could no longer get a good night's sleep with Blake's snoring. Our "library" is a small room attached to our main bedroom, and, as you probably guessed, houses a whole bunch of books. Two entire walls are nothing but books and bookcases, but the third wall, which faces east, has a set of double windows with a little twin bed nestled underneath. This is where I sleep, both for noise purposes but also because this bed is softer than the bed in the main room and is easier on my back (being that I now have no choice but to sleep flat on my back anymore, comfort is of utmost importance). Every night I tuck myself into this little bed with all sorts of soft pillows and blankets from my childhood and I listen to the world outside go on around me. Every part of the night seems to have its own special noise, and I can usually tell what time the clock will say just by keeping my ears open and listening to the sounds coming from that open window next to me. Mornings, by far, are my favorite. Around 4:30 or so is when I hear the first robin song. Thirty minutes later, as the first glimmer of dawn shows through the trees, I can hear mourning doves. Another thiry minutes later, when the sun has risen enough to let the world know whether or not it's going to be a sunny or cloudy day, I can hear chatter from squirrels, sparrows and chickadees. As for the starlings, they seem to be later risers. I usually don't hear a peep out of them until 7 am at the earliest.
I'm not sure what it is about today that seemed to dawn differently, but something about the air and light coming into my room this morning seemed to be more pure than normal, and it is days like today that really bring my failing health into stark focus just by nature of contrast. Here I am, enjoying this beautiful, unsullied morning, and yet my body is rotting out from under me like an unembalmed corpse. All of this beauty in the world, all of the promise that this days holds...and I have the privilege of viewing it with decaying eyes. Irony is so very fascinating sometimes.
Another day. I get so tired of living this way sometimes. So, so very tired of it. Every day is a battle with pain. Every day is a battle with breathing. And every day is a battle trying to make other people understand this. I know that I wrote lately about the physical side of dying of cancer, but today...today I need to vent about the other side of it, and that's the social side. It's sad to say, but after nearly four years of trying to talk to people and explain to them what's going to happen to me it seems as if I've gotten nowhere. Just...nowhere with anybody.( Frustrations with PeopleCollapse ) Current Mood: Frustrated
|Tuesday, April 18th, 2006|
|No Guts, No Gory.
I don't know if anyone has noticed, but I've had a serious case of writer's block for the past...oh, I don't know. Months now. It's not that I haven't had anything to say...it's just that I haven't been able to get anything organized into anything spectacular. Part of it is health related. I mean, I never knew how much energy it took me to write. It always seemed so free and easy before, but now that there is daily pain and pain meds and all of that...well, let's just say that I had no idea that my ability to write would suffer from it all. That's been a huge disappointment for me, as writing has been a part of my life for such a very long time. But it seems like I'm adjusting a bit. The ideas that hit me in the middle of the night are now staying with me, and I find myself waking up in the morning with at least a semblance of something I'd like to say. That's much better than where I was even a month ago.
Speaking of my health, I realize that I haven't been very specific in my journal with what's been going on with me physically. I keep making mention of pain and nausea and such, but I haven't gone into a lot of details. So I'd like to go ahead and take some time to describe my physical state. Bear in mind that this is going to be one of those "TMI" posts, so feel free to skip over it if it's not your cup of tea (I mean seriously...do y'all really WANT to hear about the pain of constipation?). But I occasionally like to do these kinds of posts just for informational purposes. Now that might sound odd, but let me just say that I have been very, very frustrated lately over the very lack of information that there is for someone like me. Oh, sure, I can find all sorts of information on breast cancer and liver metastases and side effects of chemotherapy. But I'm in the very late stages of this disease. My liver is 80 something percent cancer at this point. I mean, I'm dying of this...and I can't seem to find a single bit of non-vague information out there on what it is I can expect going forward, or even if what I'm experiencing now should be expected. No one, it seems, wants to talk about what it's like to have really, really late stage cancer that's killing them.
So I'll do it, just in case someone else is out there like me trying to find out what it's like physically to be close to dying of liver mets--and I do plan to focus on the physical aspects and specifically to what is happening to my body as I go through this. Some of it will probably be pretty gory. But hey. For the past couple of years here I've been listening non-stop to all of my friends as they describe childbirth in detail--everything from mucus plugs to burst hemorrhoids. I've seen pictures of C-sections (mid-surgery, no less) and heard stories about pre-birth enemas. So yeah. This entry is going to get down and dirty with a lot of talk of defecation and sex. Like I said, I've listened very patiently on how to do things like cut umbilical cords and clean up "blow outs." The way I figure it, it's my turn to gross everyone out a little ;)
So without further ado (and with no pressure to read if you absolutely can't stand physical nastiness) I present to you: ( No Guts, No GoryCollapse ) Current Mood: Explanatory.
|Friday, April 14th, 2006|
|Finally! The Vegas Upate.
OK. I think almost everyone has noticed that I haven't been around too much on LJ. There has been a ton going on that has been keeping my occupied. So I'll try to fill everyone in best I can in the time that I have to write. Writing has actually been very difficult lately just because I have limited energy (and the energy I do have has been funneled into doing the basics in life, such as showering, errands, etc).
There are actually two things that have been occupying my time lately: my health and our vacation. First, I'll start with the health, but I don't want to dwell on it. Health-wise I am very, very sick right now. My liver has been slowly and noticeably swelling for the past few days and it is now hard and firm and is pressing on practically every other major organ in my abdomen, causing tremendous pain and nausea. It's also pressing upwards against my diaphragm, making it very difficult for me to breathe. Any kind of movement involving bending is out of the question, and even lightly touching my liver causes discomfort. Last Sunday night was particularly bad, and I spent the entire night just trying to control several bouts of break-through pain that was, quite possibly, the worst pain of my life: searing, stabbing pain right in the middle of my abdomen, spreading upward, outwards, backwards, everywhere. It has been improving a tad bit each day since then, and on Wednesday I managed to even get out of the house a bit. I'm hoping that this is all just a passing liver flare, but considering that the liver swelling has been getting worse over a number of days here probably indicates that this is my disease progressing and that I'm going to have to seriously start thinking about a pain management program. Yippee!
Quite frankly, this is all OK. Well, not OK...I mean, I'm not thrilled to be in so much pain. But for whatever reason, the powers that be gave me absolutely PHENOMENAL health last week. If my health is going to tank, I'm very, very thankful that it is choosing to do it now rather than having done it last week.
And what was last week? Why, it was only the most important and fun vacation of my life :) So here it is, folks. The complete run-down with more ad-nauseum detail than you can shake a stick at. I will warn you that I got detail heavy in some areas, but remember...part of this is for my own documentation as well so don't feel bad if you get tired of reading by, say, the second paragraph.( The Vegas Basic Four: Weddings, Food, Shopping and StrippersCollapse )
|Wednesday, April 12th, 2006|
My health has been particularly bad since returning from Vegas, so I apologize for not being around. I want to thank everyone for their congratulations on our wedding--it truly was a wonderful day for both of us and I am so happy that we could share it at least a little bit with everyone. And please know that all of your good thoughts found their way to me, as last week I was afforded probably the best health that I've had in...well, it has been several months since I had felt that good. Call me silly or superstitious, but quite frankly I attribute last week's healthiness to the fact that Blake and I had all of you out there thinking such good thoughts about us. So thank you all for helping to make last week such a wonderful week for both of us.
I'm very much trying to write about our trip, but it has been slow going. I am supposed to have treatment tomorrow, so it might yet be a while before I am able to crank out any kind of coherent writing. In the meantime, Blake has posted our trip pictures onto SmugBug, so feel free to peruse! Wedding Pictures
I'll be trying to catch up with everyone soon. In the meantime, I hope everyone is doing well!
|Monday, April 3rd, 2006|
|Saturday, March 25th, 2006|
Lots ofabdominal pain and lots of fatigue. Liver feels very swollen and hard now. Was bedbound Thursday and Friday.
Don't really feel like saying much more except that I hope that everyone else is having a good weekend and that you all have at least one fun thing happen to you :) Current Mood: Sick
|Tuesday, March 21st, 2006|
|But I'm with the band!
It is with great solemnity that I must announce the following:
On May 18th, 2006, ethel
and I will possibly be granted the privilege of MEETING ERASURE
Yes, you heard me. MEETING them. As in, face-to-face. Shaking their hands. Throwing myself at their feet in worship and thanks over the fact that their music has made my life a better place in the past twenty years. THAT kind of meeting.
Seriously, people. This is like the mother ship calling me home. This is one of those lifetime events that belongs in the sentence, "If only I could do [insert event here] I could die happy." I'm floored, awestruck, thrilled and nervous (yes, nervous!) all at the same time. I mean, holy shit. I get to meet ERASURE. E-R-A-S-U-R-E!!!!!!!!! Oh, god, please do not let me make a complete doofus of myself in front of them.
I have many, many thanks to extend to ethel
for her very heartfelt attempts to coordinate all of this (and to keep it a secret so that she could surprise me). And while I know that things can change and it's possible that we might not meet them (the concert could be canceled, the Park West could burn down the night before, etc---and yes, I'm knocking on wood as I type all of that!), the fact that it has traveled this far and that she has been able to reach out to the band and talk to them about me and about how we've all become friends because and through their music...I'm very, very touched by it. The fact that someone would take their time to make something like this happen just to bring a little (ok, a LOT) of joy to my life is enough to make me cry.
So thank you, Laurie. You have no idea how much your efforts mean to me.
And thanks to Erasure and their folks as well for taking the time to listen to Laurie and to read all of her emails. I think that shows such a supreme amount of openness and warmth. I mean, let's face it. I'm a bit of a cliche in some ways. Here I've got this terminal illness, I'm not doing very well with it any longer, and one thing I've always wanted to do was to meet Vince and Andy. I have to imagine that other people have previously tried that line with them (the "oh, but it's my dying wish" line). I have to imagine that after a while you get tired of people unscrupulously using those kinds of lines in an attempt just to brush elbows with you. I find it very refreshing and uplifting that the people involved with Erasure are not jaded like that.
Anyways, as part of my payback to them, I'm going to be shameless plugging their music and albums for the next several weeks. And as my first order of business, I'm telling all of you in the States who are reading this to run--not walk--to your nearest record store on April 18th and pick up Union Street
, their newest album that features all acoustic performances of some of their previous hits (if you live in the UK, the album will be out April 3rd). And while I know everyone likes to pirate stuff off of the Internet for free, I'm going to ask in this case that you forego doing that and instead go out and actually pay some money for this. Support them. Support their music. Support the fact that they are very nice people behind the music.
And then when you're done buying THAT one, go out and buy some of their other albums. I guarantee that within five minutes of listening to any one of them that you'll be tapping your toes and smiling. Their music is THAT infectious. Lord knows I've picked myself up out of the emotional doldrums on more than one occasion just by popping in the CD single for "Fingers and Thumbs" (which, by the way, can be found on their 1995 self-titled album).
So. May 18th. I don't care how bad my health is...I'm going to that concert. If I need a wheelchair, a morphine drip, whatever...I am going to be there and I'm going to be wearing my little homemade ode to Erasure hat and I'm going to have a freaking good time.
And yes, ethel
, I'll make sure and bring the hot sauce. Here's hoping the sequins go down smoothly.
|Monday, March 20th, 2006|
|Friday, March 17th, 2006|
|Monday, March 13th, 2006|
|CT Scan Results
Oh, and before I forget, I should probably mention this as well to everyone. I got the results of my CT scan on Friday and as predicted...not very good. Or rather, there is some good news and bad news.
The good news is that there is no additional locations of metastases that we can see. No tumors in the lungs, and nothing too obvious in the bones (although CT scans aren't really designed to check that). This is a relief to me, as it was always my hope that if I have to die of this, then I'd rather die with it in my liver. It would be similar to how my mother died, and I find a strange amount of comfort in that. I mean, I saw firsthand how it is to die of liver failure, so there is a lot of comfort in being able to predict what might happen to me (and to be able to prepare my loved ones in advance). I wouldn't have the faintest clue as to how my death would proceed with lung mets. So that was good news to me.
The bad news is that there was definite progression in my liver, so the Taxotere/Herceptin have failed. I don't know exactly how much progression yet, as Dr. T needs to compare the films to the last ones in December, but bear in mind that in December when I was in the hospital that over 70% of my liver was cancer. I don't exactly have a lot of room here for much additional growth before we start to see more liver impairment, so hopefully the progression wasn't too much. If it is...well, there are a whole host of concerns that arise which I'll probably talk about later. I actually don't have time now as I have to run meet a friend for dinner.
Anyways, I have a MUGA scan tomorrow, and then, pending the results, I'll start Adriamycin/Cytoxan on Wednesday. And if that fails, then we try carboplatin/Gemzar (provided my liver continues to function), either as a combo or monotherapy (and perhaps in conjunction with Avastin...still need to research that). And if that fails...then that's it. I've exhausted every option that I'm aware of. Doxil might still be on the table, but otherwise, there's nothing more. There are no clinical trials, no local treatments, and no more systemic therapy. It will be time.
And just so everyone knows, I'm OK with all of this--really and truly. I just wanted to post in case anyone was curious, and I'll probably write more on this tomorrow.
Much love to you all for your support.
So...someone took the time to leave me a little comment in my journal about my negativity towards cancer. It's really a very touching lecture on how it is I should be dealing with cancer. I always love that. People who have never been through it telling me I should take a page from their book of how they define "positive thinking"--because, you know, there's only one way to be positive in the world, and that's by stopping up your ears and eyes and denying death. Anyways, you can read the comment here: http://kamigirl25.livejournal.com/201265.html
Seriously. I think that all of you who read my journal understand that all of the "negativity" I have EVER felt in regards to cancer is directed at the thinking displayed by this commenter here. This kind of two-dimensional, the-world-is-only-black-and-white/positi
ve-and-negative mentality is, truly, what makes life difficult for terminally ill patients. The first element that this person has missed is that terminally ill patients aren't dealing with cancer anymore; they're dealing with their MORTALITY. And it's people who push an attitude like this on other people that make it difficult for us to accept our death, and thus rob us of the grace of being able to die in peace. People like this who automatically assume that the mere mention of the word "death" as "negative" and who insist on shoving that concept down our culture's throat cause more undue suffering to the dying than they will ever, ever know (until, of course, the day they find themselves in a similar position).
What it really comes down to, though--and I'm not angry with this person for their comment, as I think this has served as a great example of what my journal has always been about--is that those that continue to live sometimes can't deal with their own problems of attachment to life, and this is what creates the burden to the terminally ill. People who grasp at life as if it is the only game in town are too nearsighted to realize that the material life as we know it is not something that should be blindly grasped simply because it is this grasping that is the root of suffering. To illustrate what I mean, I'd like to offer a passage from the book, No Death, No Fear
by the Buddhist monk Thich Nhat Hanh (p. 63):In chemistry we would call the ground of being of water H2O: two hydrogen atoms and an aoxygen atom. From this ground of being, a molecule, many things can manifest: clouds, rain, snow, water. It is wonderful to be a cloud, but it is also wonderful to be the rain. It is also wonderful to be the snow or water. If the cloud remembers this, then when the cloud is about to transform and continue in the form of rain, it will not be so frightened. It will remember that to be a cloud is wonderful, but to be the rain falling down is also wonderful.
When the cloud is not caught in the idea of birth and death, or being and non-being, there is no fear. By learning from the cloud, we can nurture our non-fear. Non-fear is the ground of true well-being. As long as fear is in us, happiness cannot be perfect.
Ultimately, though, what this commenter doesn't "get" is that death is not bad or negative. I've explained over and over in my journal (something that this commenter has apparently not read) how it is our society constructs the notion of death and how it is we have polarized the concept of "living is winning and dying is losing." You know, that might be a great strategy for someone with a cancer or other disease that actually CAN be beaten. Maybe that's the kind of shot of mental adrenaline a person needs in order to get through chemotherapy and radiation and all of the sickness that comes from it. I wouldn't know, as I've never been afforded the ability to think of my disease as beatable. But seriously--and perhaps this anonymous commenter can provide us with some insight into this question, since it appears from their comment that they seem to know exactly how to deal with cancer despite not having the disease--what strategy do you employ when you have been handed a disease that is terminal? Living is winning? Sorry, but when I have a disease that has a survival rate of .4%, chances are I'm not going to live. Does that automatically make me some sort of "loser" when I die of it? Because that's the implicit statement behind the kind of "positivity" that this commenter is spewing: that if you don't "fight," "live," "survive," or "climb mountains" at the end of it all, then you've somehow lost. And I don't know about you, but that sounds pretty negative.
The sad fact of the matter is that sometimes cancer IS a terminal disease. I personally know of no Stage IV woman who has survived their disease, and it's a sad fact that 40,000+ women die each year of breast cancer in this country. These statistics aren't going to change just because we want them to or because we want to deny them. So the fact that we are going to die...does this mean that we are all losers in this game? Did we not fight hard enough? Oh, I know. It's because we just didn't WANT to live enough. I've heard ALL of these before, as has EVERY Stage IV woman who has tried to make the desperate attempt to reconcile the reality of their upcoming death with this kind of dualistic positive/negative thinking exhibited by this commenter (and by society in general). The end result is that when the cancer patient tries to embrace their death, people like this commenter seemingly want to step in and impose their own views on life and death upon us all. This just ends up making the dying feel bad for embracing what is, in fact, a reality for us all. None of us are immortal, so to implicitly tell someone that they shouldn't be thinking of their death because it's "too negative" is such a huge disservice to everyone, whether they are currently dying or not. In fact, who actually has the right in this world to deny anyone sucn an exploration of their mortality by labeling such an endeavor as "negative?" Unless one somehow has god-like knowledge on the afterlife, I'm not sure anyone is qualified for such judgment calls.
People want to talk about "positive" and "negative" and want to use the words "life" and "death" interchangeably with them. Why is focusing on life the only way our society defines being positive? It actually makes me quite sad that people do not recognize the spiritual need to learn to die well, that people like this commenter may never know the benefit and peace that comes not just from learning to live well but from learning to embrace death as an open and welcoming concept. Now I know when I write that that some people will have a knee-jerk reaction thinking that I am somehow equating the welcoming of death with some sort of death wish or suicide. That couldn't be further from the truth. The fact of the matter is that embracing your death--the real and true notion that you are not immortal on this planet--is the only way to be free from the suffering that everyday life provides.
Let me put it more concretely. Every week, I go to my oncologist's office and I get handed a heavy dose of toxic medication that makes me ill and reduces my quality of life. Why would I do that knowing that I have no chance of living through this disease? Knowing that I'm not going to be one of the "winners" in life, what possible comfort could I gain from doing this? As the commenter writes, perhaps I do it to eke out one more day with friends and family. Well, Ok, sure. I like my friends and family. But it doesn't change the fact that I'm going to die of this, so again...what's one more day when I know that it's all going to come to an end anyways? What's my motivation for eking out more time here? I think most people would assume that I do it simply because I'm afraid to die when, in reality, it's the opposite. I'm NOT afraid to die.
Sounds odd, doesn't it, the notion of NOT being afraid to die as the impetus for me continuing on here now? Let's analyze this for a moment. If I were afraid to die, it wouldn't matter that I eked out one more day because I wouldn't be able to enjoy it. Every waking second of my life would be filled with fear, desperation, longing, clinging, sadness for my upcoming loss, and so on. Who wants to live that way? Oh sure, I could do what this commenter suggests and adopt a denial-filled attitude of false positivity, but really...how long can one continue to fool oneself in the wake of noticeably deteriorating health? At some point during the course of this disease, my upcoming death is going to wake up and smack me in the face, as it will for every other woman with this disease. Denial only works for so long in this game; at some point, your physical health is going to betray you and your denial, and in that case you'd better have another strategy in mind for coming to terms with it all.
So what's my strategy? I make peace with it. I find a way to understand what my death means in the grander scheme of my own personal spirituality. I find a way to realize that my death is not an end of anything, that it's just a transition. I find a way to understand the anatomy of our brain--and its need to classify things as terminal and separate--and how this impacts our ability to realize our spiritual nature. At least, that was the path for me--some take very different spiritual paths. But as a result of my own path, here I am. I do not fear my death, and so I go on with my life being able to appreciate everything--sunshine, the squirrels in my backyard, the playfulness of my cats. Nothing small escapes my appreciation or gratitude anymore. And that only came about because I no longer fear losing it all in my death.
And this is what drives me to continue my treatment. It's not because I am so attached to my life that I am so desperate to have another day; it's because I am NOT filled with the desperation that so many other people are filled with when diagnosed with a disease like this. To be honest, I can't think of a more "negative" thing to have to endure. What a burden it must be for some people to wake up every morning and feel nothing but that kind of overwhelming and crushing despearation that they need to do everything just to eke out one more day! No, I choose to NOT live a life of quiet desperation whereby I am constantly looking over my shoulder in fear for the grim reaper. Instead, I choose to live a life that understands that the grim reaper walks next to me and that he is not my enemy.
Now I don't know what this commenter's spiritual belief system is, but for me, the end of my life is not the end. When this body of mine dies, all it means is that it is my turn to become the rain. If that is somehow negative thinking, well...then so be it. Someone labeling my acceptance of death as "negative" will not change the fact that my happiness runs deep precisely because I am at peace with dying. And someone labeling "life" as the only positive in the world will not change the fact that everyone dies and that everyone will have to come to terms with that at some point. You can either do it now, or you can struggle with it on your deathbed. And for me, I chose to struggle now so that I can be at peace on my deathbed in order to provide comfort to my loved ones. That was the right decision for me. Regardless, at some point every person needs to talk about their death...and it's a shame that those that cling desperately to life can't put aside their own ego and attachment to allow other people to indulge in that freely.
As for this journal being some sort of "beacon" of hope for those dealing with cancer, all I have to say is that this commenter has obviously not read my journal very well. This journal was not and has never been a "beacon" for dealing with cancer. This journal, from day one, has is about dealing with DYING. And if that makes someone uncomfortable, then I'm sorry for that. But realize that my discussion of death is not the problem so much as it is the other person's inability to confront the subject. And as sympathetic as I am for people who wiggle away from the topic of death as if it's a poisonous snake, in the end someone else's inability to deal with the topic of death is just not my problem.
If you've got baggage about death, I can appreciate that. But it might be a good idea to stop blaming those that talk about death as the root of your unease and instead analyze yourself and your own ideas/spirituality to figure out why it is that the idea of death is so anathema to you. After all, "hope" is not just found in life; it can be found in death as well.