Because Sunday

Because Sunday

Last year National Cancer Survivors Day was over before I even knew it existed. I kind of shrugged it off. This year I was alerted to its approach via social media. And this year I’m decidedly not enthused about it.

I see the website, with tidbits like: “On Sunday, June 1, 2014, cancer survivors across the globe will unite to show the world what life after cancer looks like.” (Aside: that confuses me—is it “national”, which nation, but the around the globe quote seems it should be called international day????) Or, the tidbit mentioned on other blogs that the day is show life after cancer can be better?

Admittedly, I’m in a very bad mental space lately. Since March, I’ve had one health issue after another, starting with a suspicious mammogram that led to a relieving MRI that showed no evidence of recurrence-at least in my breasts. But after that it’s been other health issues, drugs with bad side effects, or maybe not—still trying to figure out what is going on with me. Meanwhile, I feel crappy, and I am torturing myself that all this indicates cancer is back somewhere else. I felt kind of “blah” the summer before I was diagnosed. And yes, I had that clear mammogram a mere 5 weeks before I was diagnosed with a big ass tumor that first time. So sorry, but I don’t have much patience in this process of trying to figure out my health problems without considering what I fear most.

So I’m not up to showing the world what life after cancer looks like—for me, it has been just riddled with fear, anxiety, and panic. Even if what is happening to me now is not recurrence, the fact I’m having such a difficult time tolerating or resolving new, other health issues just shows how much cancer has damaged my body—made me weaker and not as able to shake off what someone my age who has not had cancer might be able to do so easily. No, I don’t think the folks behind this event want me as a poster child for what life after cancer looks like. I wish I did look and feel like those smiling people in the survivor pictures, swimming, being active, oddly resembling ads for feminine hygiene products. Oh yes I went there.  I may feel terrible, but I can’t stop my sarcasm.

As for that word survivor, once more for those in the back row—I do not consider myself a cancer survivor until I die of something else. I do not use it because my friends with Stage IV are not “losers”, and they are too often shut out of the rah-rah survivor discourse. I’ve written about this, and other cancer labels and language many, many times, so I’m putting links below to some of the ones I remember—I’m sure I’ve written about it in other posts that I’m just not remembering.

One final, parting shot thought: I’ve been merely re-posting old pieces lately. Yes, I’ve been too tired and feeling too crappy to write much. But that is not all. I find that I still feel mostly the same about all these issues. My mind has not changed too much. I used to think if I just kept writing and talking, the conversation about cancer could change. I no longer think that. I merely hope that at some point, the world will see there is not one single, happy story of cancer, there is not one “THE way” to do cancer (I’m thinking about that TV news person who introduced the clip of the dancing mastectomy woman by proclaiming her dance as “THE way to do cancer, folks”). At some point, I hope society will understand that there are thousands (millions?) of cancer stories out there, and no two are alike. And none of them are wrong. Taken together, they are the real, whole story of cancer.

What Do I Call Myself?

The Other Other Language of Cancer

Why This Smart Ass Does Not Kick Ass

The Curmudgeon Formerly Known as Cancer Patient

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Remedial Course

Read something in the blogosphere that made me remember writing this. Might have to repost now and again until at least the media gets it right–internet “experts” never will.

Somebody Needs to Buy These Media People a Dictionary

So I’m watching GMA Friday morning and there is a brief segment about this co-host on Dancing With the Stars, Brooke Burke-Charvet. Now, I do not watch the Dancing show, know nothing of this woman, and have not bothered to look into her story on the internet, not interested enough. My complaint is the way the dark-haired female reporter, and her producers at GMA, presented the info. This Burke-Charvet woman has or had thyroid cancer, and is doing some promo thing on some health magazine about how her cancer scare means she no longer worries about looking young, and she wants people to live healthy, exercise (the usual crap), and get check-ups with doctors. Now, I do not know if it was Burke-Charvet who actually said people need to engage in preventative practices by getting annual check-ups, I will give her the benefit of the doubt. But certainly the GMA reporter said that the idea behind the campaign is for people to prevent health issues, like cancer, by going to their doctor. Apparently this Burke-Charvet has always lived healthy and had no symptoms, and it was on a routine visit to her doctor her thyroid cancer was detected.

In what universe is early detection equal to prevention?! Going to the doctor and learning she had cancer did NOT prevent cancer. She already had the cancer, therefore, it was NOT prevented. It was detected early, and that is great, but it was not prevented no matter how the media spins it.

This is the kind of thing the media does that drives me crazy. Throw around words like “prevent” so people feel in control or empowered. How many times will I have to write this? Some things are out of our control, if cancer had a motto it would be “shit happens”. This idea we can control every single thing that happens to us, cancer included, is just extreme hubris.

It is important for the media to get this language of cancer right. By suggesting to viewers that “prevention” is within our grasp just by getting regular medical check-ups is damn near negligent. I repeat, if a regular doctor’s visit (as in a visit not instigated by symptoms), reveals the presence of cancer, that is EARLY DETECTION, not PREVENTION.

The media needs to pull their collective act together. I am especially annoyed this segment was on GMA, a show featuring a news anchor with well documented bouts of cancer. She and her cast mates should know this difference all too well. Shame on you, GMA.

Agitated

I want to write a thoughtful post about all that is happening with my current issues, but I am unable to do so right now. In a nutshell, I have “some kind of cystitis” that is causing a high, almost unmanageable urge to urinate, VERY frequently. This has been going on for over two months and I’ve been bouncing around with the doctors, and dealing with scanxiety (see past few posts). A frightening episode with ultrasounds of my kidneys and bladder yielded “good” results. As in, no tumors (yay), and everything seems normal (not abnormally retaining urine). That’s great, except I still have a problem, and it seems undefinable, at least according to these imaging results. I’ve been informed that these “good” test results do not necessarily mean I do NOT have cystitis.

In the meantime, while going through the tests and waiting for results, of course pharmaceuticals were prescribed. Of course insurance would not approve the doctor’s first choice, and I’ve been forced to jump through hoops. Nothing new, that happened a bit during cancer treatment. But the drug that was finally approved came with dreadful side effects. I have been suffering from these for the past week and it has been as bad as the effects of chemo, maybe because I did not expect them to be so drastic. Dizziness, blurred vision, heart racing (although that one is not listed), weakness…the list goes on. The one that “got” me though, was: agitation.

Yes, I’ve been very agitated, which is why I’m late in getting this post out, and why it took some time for me to respond to comments on recent posts. I was too weak/fatigued to spend energy on anything but working. And I still do not trust myself to communicate in a level-headed way, even now.

Let me put it this way, the side effects were so extreme, I was sure cancer had returned, everywhere in my body. Despite an all clear MRI two months ago, I’ve been convinced that a giant tumor is lurking in my breast, under the scar. I’m convinced cancer has spread to my brain. I’m a bit calmer now that I understand that I’m agitated because of the drug, but I’m still a little “off the rails” even now. I was on the drug for a week, and I ceased taking it a few days ago—a choice I made even before I understood all these side effects—I stopped taking it to rule out the drug as a cause of what was happening to me. I’m glad I had the presence of mind to do that, and looking back at how bad the beginning of this week was, it is amazing I did have that presence of mind.

I’m still not “right”. I still have upcoming doctor’s appointments….and the original problem of urgency and frequency has returned. My frustration level right now is VERY high. So I’ll stop this post here, because I can tell, even just writing this, that my mind is still not right. I only wanted to let everyone know, given the fears I’ve written in recent posts, that at the moment, they seem unfounded.

But my problems are still not solved, so my quest continues.

Pitfalls of Residing in Cancerland

There have been a few pieces of bad news that have crossed my line of vision lately: recurrences and death. I wrote this a few months ago about the pains of remaining in Cancerland, where the likelihood of exposing oneself to such pain is much higher.

Hamster Wheel

Posted on August 17, 2013 by Cancer Curmudgeon

I think a lot about the risks and statistics regarding cancer. I think a lot about past post topics, like how folks in the kingdom of the well just want people who have/had cancer to move on already, just “get over” all the cancer. I don’t think about these things on purpose, they just pop up, unwanted. This post is about how these seemingly unrelated ideas mesh.

For those of us lucky enough to be former cancer patients, as in NOT Stage 4, our lives become about reducing risk of recurrence—diet, exercise, eliminating bad habits, taking up yoga/meditation/acupuncture (if you can afford the organic foods and things like acupuncture). Do all these right things and maybe cancer won’t come back. Then again, maybe it will.

What no one ever seems to mention (at least as far as I can tell) is another percentage or increased risk. The more former/current cancer patients in my social circle (in addition to or in place of those untouched by cancer? I don’t know) the more chances are I will hear bad news more often.  It is just the way the odds are.

Sometimes with the various blogs I read or the few folks I interact with on the interwebs, plus those IRL, it means I hear more bad news than average, meaning more sadness.

Make no mistake, my sadness is NOTHING compared to what is felt by those whose news I’m hearing.

All I’m referring to here is the fact that by hanging out in Cancerland even while I have no evidence of disease, I am still wallowing in cancer, quite the opposite of “getting over cancer” which so many of those untouched by cancer wish I would do: “get over cancer”—snort of derision.

Being in Cancerland is like getting on a hamster wheel I cannot seem to escape. Every time I turn around, someone else is getting bad news, because that is the increased risk that comes with knowing cancer patients. Maybe in 7 years I can exit the wheel—after I get through my next 2 years of bi-annual onco visits, after the following 5 of annual visits, and hopefully after that I never see him or another oncologist again. And after I stop interacting online with other cancer patients. But right now I run on that wheel like a furry critter, chased by cancer, Cancer, CANCER. Whereas before October 2010, cancer was hardly a blip in my consciousness.

I don’t know what to make of my increased risk of hearing bad news, either for myself or for others. In a conversation with Tumblr buddy Greg, he pointed out we have to celebrate the rare bits of good news, because they are indeed so rare in Cancerland. Most of the news for me has been good, but I find myself thinking often of those who keep getting hit with the bad news.

I’ve often pointed out on my blog that I am not sentimental, that I do sarcasm far better than true emotion. It is difficult for me to express words of encouragement or support or any of the other things those in pain need to hear. I think I never come off sincere, even when I am at my most sincere. So I tend not comment to others these messages, because I find words so inadequate at those most awful times. But I am heartbroken for all the sadness I hear about, I want the reason for the sadness to just STOP already. It really is that simple.

So to those reading who are Stage 4, and/or who’ve had recurrence, take this post as my message of support.

And I’m not stepping off the wheel today. I’ll keep my risk for increased chance of sadness high for now.

 

A Cancer Free Mother’s Day

A/N: This post will address my discomfort with what I perceive as the way Mother’s Day is now linked with breast cancer. I’ve read a few blog posts about mothers recently, and I think I’m in the minority with my discomfort at this association (again, maybe this is just what I see). I can only speak from where I stand: a woman with breast cancer who is not a mother, whose own mother does not yet have breast cancer, and who was my primary care-giver during cancer. I realize several bloggers I read had mothers who died of breast cancer, and as I do not, so I can only empathize. I hope this post communicates empathy, and is not tone deaf.

That said, I will try to be delicate, but I still think this post will offend some readers. Please proceed with caution, or maybe don’t read.

Later March through mid-May now mirrors October for me, in my Mid-Atlantic American resort area. I cannot get down a street or open a local paper without seeing a poster-sized advertisement for some race, walk, softball game, or other activity to benefit local breast cancer organizations.

In many ways, Pink invading this time of year makes more sense than October. Pink is often associated with springtime. The days are usually warm—great for races or outdoor games. Plus, so many harvest/back-to-school/holiday season events happen at the end of the year, I suspect moving breast cancer races to springtime means less competition from those other events (this may only be true in my region, I don’t know).  As I wrote about wanting to reclaim October last fall, I wondered why October is designated as Breast Cancer Awareness Month; I thought a spring month would be more appropriate. I think I used good ol’ Google, and never got a full answer. Or maybe I’m just being wishful—I hate Pink painted all over my beloved golds and oranges—so a BCAM move to a spring would be a relief in my view. *My apologies to those reading who are not in the Northern Hemisphere, for my American seasonal POV here.

Some of the shenanigans associated with the local fundraisers this year are the topic of maybe another post, but I’m grappling with another painful area right now. What is bothering me is the linking of Mother’s Day to breast cancer.

I noticed it last year, in March, when I got a post-card from a local breast cancer organization regarding a project of sending photos and/or stories about Mom. Of course, there was also the suggestion of a donation in mom’s name for the holiday. I got the same card again this spring, too. As far as I could tell, the moms to be honored need not be breast cancer patients, I think—but to be honest, I did not look too deep into it; I found it too disturbing. My quick scan of the website led me to a donations page, and another suggestion of donations in anyone’s honor for any holiday—including Father’s Day. I admit I was impressed by that—finally an acknowledgement that men can get breast cancer, however indirect that acknowledgement. Donating in honor of someone for a gift can be positive, if done wisely and so long the honoree’s charitable giving preferences are respected. But only a donation in honor of Mother’s Day warrants extra special attention, I see.

So it isn’t the money that is necessarily bothering me (too much) in this situation. Perhaps this post is me trying to put my finger on just what is bothering me about the fact I keep seeing the words: mom/mother and breast cancer together on one page so much lately.

There is a subtle whiff of marketing of course. I understand non-profits need to seize every opportunity to make money. It’s just, why the automatic leap that seems to go like this: mothers = women = women’s issues/health = breast cancer, so suddenly the holiday becomes all about breast cancer? Perhaps my view is too narrow here; I did not investigate organizations for ovarian or any other cancers, to see if there were campaigns to fundraise to honor one’s mother.

But it wasn’t just local breast cancer support organizations that seemed to link mothers to breast cancer for holiday festivities—local and national media linked the two as well. I opened the Sunday paper, and the magazine insert featured Christina Applegate and her mother, both famous breast cancer survivors. Why not feature them in October? Why not feature, I don’t know, a successful mother and daughter-owned business—as in, something women achieved rather than had to deal with? Or a mother and daughter both with any other cancer? I mean, any gynecological cancer would’ve been appropriate for Mother’s Day, right? Or are those diseases not common enough to suit everyone’s needs? Well, that argument doesn’t work—I’ve pointed out enough on this blog about how awareness advocates for diseases such as lung cancer and heart disease use breast cancer to point out how these diseases harm more women than breast cancer (Want Attention? Just Say Breast Cancer). So why no cover story of a mother and daughter team taking measures to prevent hereditary heart disease? As more intelligent women than I have long pointed out—why is breast cancer a stand-in for all women’s health?

I turned on the local news that night, and a woman who overcame a number of odds—widowhood, breast cancer—to return to school for her degree was featured. The cynic in me wondered if they started by looking for this news story by researching local “older” college graduates who were moms, or did they start at breast cancer support organizations to find her.

Is having breast cancer a prerequisite to be considered a mother worthy of honor? Is breast cancer the one and only threat to health and well-being of mothers all over? Is overcoming breast cancer the only achievement women can be publicly lauded for? Because that seems to be the message the media gave out that day, in my view.

Again, I cannot stress enough that I do not want to be insensitive here. Much is written about hereditary breast cancer—because breast cancer has that family link, even for this Cancer Curmudgeon, so it is natural for this mother-daughter + breast cancer topic to be written about. And most of the bloggers I read acknowledged the deaths caused by all hereditary cancers.

So maybe what is making me uncomfortable is this.

My mother’s mother had breast cancer at the very end of her life, over a decade ago. It went untreated because she was in the process of dying of heart disease. Then in 2010, my mother watched her youngest sister, that she cared for as if she were her own child, get breast cancer around age 50. A few months later her own, only child (yours truly), got breast cancer. My mother has had enough of breast cancer. I know there is no such thing as a trade off in the world of cancer (wrote about this a long time ago)—just because everyone around her has had breast cancer does not make her exempt. And that is what frustrates me so much. I was constantly barraged with subtle or direct messages over the past few weeks that seemed hell bent on making me understand something I am only too aware of: mothers get breast cancer. Breast cancer is a clear and constant threat to us, and we cannot ever get away from it.

My mother should be honored because she had to, and still has to, put up with my whiny, angry, annoying breast cancer patient self. Hell, my mother should be honored for putting up with the annoying person I was before breast cancer. So I honored her by shutting up about breast cancer all day on Sunday.

I’ve been tied up in knots about writing this post. I know that many women have had mothers and/or grandmothers die because of breast cancer and I do not mean to imply that their pain should be ignored—of course Mother’s Day is difficult. But it is also difficult for anyone whose mother is no longer alive for any reason; something a friend’s story reminded me of sadly last Sunday. I could not help but wonder if there were adult children out there, again resentful of breast cancer being shoved down throats on that day just as it is in October. I mean, it only stands to reason that this would happen, given the backlash to breast cancer that is happening in other cancer organization campaigns (Pancreatic Cancer Action PSA, anyone?).  Are other children perceiving a message that their own mother’s lives were somehow less significant because they had/have other cancers or challenges? And I very much resented the fact that a day meant to honor and celebrate, for me, was under a cloud of cancer, the same cloud I see nearly every damn day.

So I took one day off from cancer. And I want an end to ALL cancers. I’ll take that any day, it doesn’t need to be saved for a holiday.

 

Post-Treatment Depression

I’ve been seeing a few graphics and posts on the internet about May being Mental Health Awareness Month, and a few blurbs mention cancer’s impact on one’s mental health. These pieces reminded me of how lost and down, maybe even depressed, I felt after I completed treatment. For me, the worst part was, and still is, the anger I had/have about cancer. I wrote this post last summer about an epiphany I had, at which point I began to improve a great deal. I continue to improve thanks to the therapeutic aspects of writing it all out on this blog.

That said, I am certainly not suggesting my method of getting better is one that anyone else should try. In fact, I’d say the opposite. However, the past year of dipping my toe into the realm of social media tells me that I am not alone with many of my views and feelings. So I re-post this for anyone who is new to cancer or the aftermath of cancer, and finds him or herself in the place I once occupied.

This post reflects one of my most adamant, non-negotiable views about cancer. Cancer patients must be allowed to feel whatever they feel—even if those feelings are considered negative. NEVER, EVER just tell a cancer patient to think positive to deal with cancer. It just adds stress, and in my case, I felt blamed. I don’t want any other cancer patient to feel that, ever. One of my turning points to accepting my feelings was reading Jimmie C. Holland’s “The Human Side of Cancer” (chapter 2, specifically). Another turning point is described in this old post.

I’m Allowed

Posted on July 29, 2013 by Cancer Curmudgeon

For the people who say “thanks for this.”

This post is about allowing myself and encouraging others to do cancer any way we damn well please.

Just prior to starting this blog, and in the hazy days of bouncing back from the treatment side effects, I was in a bit of a depression. As I’ve mentioned in previous posts, I had no time or energy to find blogs while I was actively in treatment and working my ass off. During treatment I was not happy with the rah-rah/pink/warrior culture that was the most prevalent form of support available (except in the diagnosed-under-40 support group, thank goodness). After I made some life changes, I was pleased to finally be able to take some time and dig around and find blogs or articles that said some of the thoughts that were more like mine, and I began blogging to interact a bit.

Around the same time I found other blogs, I had an epiphany. I was at some event last autumn with other cancer patients and expressing some anger. A fellow attendee started suggesting stress reduction methods, telling me that I must “accept” my cancer and ended her pseudo-lecture with “you can’t be angry all the time.” I was just so sick of this type of lecture; it wasn’t the first time I’d heard words of that nature. And BTW, I don’t think people mean the dictionary definition of “accept” when they tell me to do that; I think they really mean “shut up and sit down”.

There I was, a 40-year-old woman, being talked down to like a 6-year-old, because, being, ahem, a couple decades younger than most in the room, I was the youngster, the newbie; never mind I’d finished treatment already. I was not a cancer expert (and still am not), but I wasn’t a novice either, for crying out loud.

Then it hit me—why was I even listening? I can be angry if I want! I probably thought those sentences in the petulant voice of the 6-year-old me, but the minute I did, half the anger just fell away. And it continues to fall away still. By giving myself permission to be angry, sad, frustrated, etc., I become less so, especially with each post I write. Sure, anger & other bad company are still there, but in a weakened and more useful way–they inspire and motivate me, to speak up or write these posts. Whether they should be posted and sent into the blogosphere—I’ll get to that in a minute.

While I get that people who say “think positive/cheer up” and that sort of thing are well-intentioned, maybe even trying to help—the result for me is the opposite. I just get more pissed off, because in my mind, my feelings are being diminished, dismissed, blown off. That never feels good. Cancer sucks, but being told how to do cancer sucks too. Part of the crapfest that is cancer is the culture around it (especially true in breast cancer), and the culture demands conformity, and as I’ve said in previous posts, I cannot do conformity. It is great that the normal, socially acceptable warrior/pink/rah-rah methods work for the majority of folks, I can respect that. I’ve seen people swallow negativity and wondered if they could achieve better peace by letting it out, but it is not my place to tell them what to do. And I don’t want to be told what to do/how to handle cancer either.

This blog is to escape and to challenge all of the bullshit in the warrior cancer/don’t worry, be happy world that just does not ring true for me. Here, I express my thoughts in my way, no matter if they are angry, or blunt, or whatever other unpleasant adjectives can be applied to them. Here, I express my experiences of cancer without (much) self-censorship. My professional life before 2012 was very constricting, so I wanted a space where the rules, limits, deadlines, ideas were mine alone. This is that space.

I think many would tell me I should keep my ugly thoughts to myself; I should stop sending negativity out into the universe, or blogosphere. But my challenge to that attitude is this: why is expressing negative feelings automatically considered a negative action—why can it not be viewed as a positive, “working through it” technique, which is kind of the point of a lot of therapy? How can bad feelings be turned around if not confronted, if they are constantly submerged, denied, hidden politely away? And most of all, why is it assumed that expressing negativity means the one expressing it is negative on the whole, and somehow not capable of experiencing other emotions (sometimes simultaneously)?

My blogs are not read by many, but the few comments I’ve gotten here or on the other blog tend to say “thanks”, and some variation of “I thought I was the only one who felt that/this is what I’ve been trying to say.” So while many hear/read thoughts that make them uncomfortable (which might be behind some of the “get happy” suggestions rather than a desire to really help), those same thoughts provide comfort to a few. I remember all too well last October not knowing what search terms to use to find people with opinions similar to mine, and I remember all too well how relieved I was to stumble, bass-ackwards, onto blogs that did express such opinions. So if my blog is just one more place someone can stumble upon and find relief, then my own victory over anger & company is nearly complete. I hope your victory can be found here too.

 

In Real Life

I had the pleasure to meet a Tumblr cancer buddy, Greg Barnett aka gbph, this weekend, live and in person!

Meeting people via social networks is still new to me. Before cancer, I spent too much time viewing computers and the internet as work or chore tools—not recognizing the positive things that could occur. I am so glad that I’ve learned how great it can be to connect with people with similar interests, opinions, tastes, and more. Greg has been a huge influence and great cheerleader in my post-cancer life, one I will be eternally grateful for. (I’ve linked to his Tumblr blog or posted his thoughts a few times here on this WordPress blog.) I’ve been lucky in that this is my second real life Tumblr meet up; I’m lucky to have a found a dear friend in the crazy fandom world on Tumblr in rouge347–and we were lucky enough to meet in person a few weeks ago!

I will never be able to fully express just how much my life has been enriched by these experiences, how much I love my buddies!

Greg and I after lunch at a restaurant on Maryland’s glorious Chesapeake Bay:

IMG_20140510_151446183

You. Are. Scaring. Me.

Attention all medical professionals–doctors, nurses, especially those working in imaging facilities: your questions frighten me.

I used to think MRIs the most serious and nerve wracking of all imaging tests, but now I think ultrasounds are just as bad. I’ve had a few of those–first to find my breast cancer back in 2010, then all throughout treatment in 2011-12, to monitor my heart’s reaction to damaging cancer treatment drugs. The ultrasounds for the heart weren’t so bad; maybe because it was so clear to the techs why I needed the test. But my first breast ultrasound was pretty upsetting. Lots of questions, bringing in other techs to view the images, and just a general atmosphere of “something is wrong”.

The same things happened today as I had to undergo an ultrasound to find out what my worse-than-a-UTI problem actually is. As she applied the gooey wand, the first tech asks have I had many UTIs? (No, my very first was last September, and the second wouldn’t go away it seemed, and that’s how I wound up here.) She brings in the second tech.

I understand the second person is needed, in fact, I think my first tech was an intern who needs her work checked, even if she performed her tasks correctly. But I’m sure “Seinfeld” or “Friends”, or both, covered that issue of having something so bizarre or serious that other medical personnel want to see it. It was funny on those shows, but not funny in real life.

So the second tech begins waving the gooey wand and watching whatever images the inside of me put on that screen. “So have you had kidney stones?” Great, another question.

NO!

“Your questions are alarming me,” I said as matter of factly as I could.

“Oh we just have to tell the radiologist what you say–he’s gonna ask about it,” she chirps.

“But you are not recording  my answers,” I pointed out. Please, I cannot remember whatever I want when I enter a room without making a list these days. I do not expect any medical professional, with a million patients running around, to remember one darn thing. So, please, jot down my answer when you ask me a question, especially if you claim the info needs to go to another person.

Dead silence. Did not even bother to answer me.

I admit, I’m a naturally anxious person and I tend to let even simple things ruin my day, my week, my month. And a health concern is not a simple thing. So I’ve walked out of the hospital today completely worried. I’ve no idea when I can expect to learn about my results. Yes I have a follow up with the urologist in 6 weeks–but that is if all went well with this test today–and I don’t think it did.

It is possible I am imaging problems where there are none. Maybe I don’t like ultrasounds because the person administering the test is so close and I’m trying to “read” them. I cannot help myself. So when I’m asked if I’ve had recurring stones or UTIs, all I can imagine is that they are thinking stuff like: “OMG, her kidneys/bladder are a mess. How could she go so long without problems? Why did she not get to a doctor sooner?” And of course, as a cancer patient, even though no one has said “cancer”, I cannot help but wonder if they are thinking, “look at that huge tumor.”

In short, the questions scare me.

In addition to my own self-made panic, another, more logistical concern grips me. I realize that the urologist (or whatever doctor) writes an order for a test, but why is the other, relevant information not communicated to the poor sap who has to look at the images, interpret them and report findings back? Shouldn’t the people making and analyzing the images know what is going on with me? As in why on earth are they looking at my bladder and kidneys? What are the symptoms or concerns that put me in that room with them? Is this some kind of freakin’ treasure hunt or detective game? It’s as if the doctors are saying, here, look at this person’s organs and see if you can find anything wrong–but we’re giving no hints.

I confess this is a rather irksome issue for me. I cannot help but think back to my very first mammogram, that resulted in a false negative. I know, I know, I should let that go–after all, the tumor was discovered just a few weeks later, and I lived, so I should shut up about it. But humor me. I went to get that mammogram not because I had any symptoms, but because I had a strong maternal history, because my aunt was just diagnosed at age 50–a below average age for breast cancer. I was 38, below the current recommended age for getting annual mammograms. I was being proactive. So did the radiologist see my age, know the family history, and just blow off that big white spot as density, when it was really a tumor anyway? Or did that information not reach him, and he just saw 38 year old white female with no symptoms, and maybe he thought–oh they always have dense breasts, no worries? And please know, the tumor was not hiding IN the white area, it WAS the white area. As mentioned if previous posts, I have trust issues when it comes to tests and such, and this is why.

I know it would not change anything to have been diagnosed a few weeks earlier. What happened, happened; and I am still here. Maybe I’d be a little less angry, who knows? I am curious to know if background history gets communicated to imaging personnel, and if it is factored in. If it isn’t, um, is there a petition I can sign to change that? Maybe some patients think all that information sharing between doctors and medical facilities is invasive. Not me–I think of the very thick file that followed me at the infusion center, I think of all my discs containing images from various facilities. All of that is me, my story, and I have no idea what parts are relevant for this moment, this particular problem. Is that not why my records exist…in recorded format?

So, again, to those doctors, nurses, imaging techs: asking questions–and worse, not answering them, and how you behave, even your face, I’m over analyzing all your actions. Maybe most patients do that, maybe not. As a cancer patient, well, these situations take on a higher terror level for me, and I’d guess many other cancer patients. It doesn’t matter if YOU don’t say cancer–I’m thinking it. And even if it isn’t cancer–well, I’m in a center, getting a test, I’m thinking the worst. Please understand that.

And I walked out of the hospital today frightened.

Gumball Machine

I’m gonna take that infamous Forrest Gump quote and tweak it and turn it on its head: life is NOT like a gumball machine. I cannot just put something in (money, effort, etc.) and expect a specific outcome.

Over two weeks ago, I wrote and posted Unintended and Unwelcome Interruption, about why I’d not been writing or even commenting much in the blogosphere. Namely, I was struggling with computer issues and some urinary distress not to be blown off as a mere UTI. By then, those issues had been going on for a few weeks. And they did not end with that post. So yes, I’ve still been spotty about posting and reading new posts by my favorite bloggers—well, I can read them sometimes, but only able to “like” or comment at random moments according to activity and what machine was working at the moment.

The fall-out from the past two months is some unpleasant understandings. I’m not saying cancer was easy for me, but I knew, and realized all over again, I was lucky in that things went according to plan. The oncology team suggested, and we all agreed, let’s do chemo to shrink the tumor, then remove what it left (lucky lumpectomy!), then do radiation. Except for a few hiccups, as in a misdiagnosed Staph that delayed radiation, all went according to the plan, the timeline. Yeah, it took over a year—thanks to being HER2+ and needing a year’s worth of Herceptin—but everyone input the required efforts and actions, and the expected outcome was achieved. Again, I know that does NOT describe the cancer experiences of too many other patients, so yeah, I was lucky.

That does NOT describe my recent weeks.

No, I’ve fought and fussed with multiple trips to multiple computer repair services. A postponed appointment from the urologist before I even met him caused me to have an utter meltdown. I pride myself in applying processes of elimination and deduction to figure out solutions to problems. I do ABC and expect XYZ—and that just….never happened over the course of the past few weeks. If I were to play a film of myself and my recent behavior, I imagine it would look like someone running full steam into every surrounding wall and getting destroyed.

IMG_20140510_094633730

I’ve always known I have some issues with chaos and control, and have long planned to write about them, especially since cancer and control (or lack of) have left scars on my mind. My friend, who deals with chronic illness, and I joke about rearranging the sock drawer. When life events go awry and we know we cannot do anything about the events, we reorganize something, like the drawer of socks or other clothing. I like socks. I will group them all by when I wear them seasonally. The next time I feel out of control, I go and group them according to color and/or type. You get the idea. My life will be falling apart, but I can make the socks behave.

I think I’ve turned a corner, my issues seem on the road to being resolved. But, hey, I thought resolution was nearby two weeks ago with that previous post, and look what happened. I chastise myself to not count the chickens before they hatch. Still waiting to pick up one laptop, still waiting for medications and a test that could confirm what the urologists thinks is wrong—and I hope it is as simple as he thinks—as in NOT cancer.

But I am breathing a little easier. And I’ll leave the drawer full of socks alone today.

Guest Post At CureDiva

I’m honored to have been asked to write a guest post for CureDiva. It is a TMI post, so beware. But I hope it gives everyone a small chuckle, and opens a different discussion about all that hair loss. And yep, that is a picture of me, or rather my hair. I actually have more grey hair than it looks–not sure how I managed to hide it! Oh well, beginners luck in photography, perhaps?

It’s called Hair Loss. No, Not THAT Hair. Hope you enjoy.

Cancer Curmudgeon Hair