So here I am, starting to feel human again, loving my hormones, and life over all taking on a nice mellow pattern. And then....my mom has been diagnosed with intestinal cancer. Seriously, how the fuck does this shit happen twice in a year in one family!?!? I'm pretty sure the statistical odds of it happening are ridiculously small!
Right now she's still in the diagnosing phase, so we don't really know how bad it is, but the doctors are already talking about it having metasticized. I think what pisses me off the most about all of this is that she's been sick for the last few years, and they've done all kinds of tests, blood work, specialists, even a frickin' bone marrow biopsy (I was seriously ready to start kicking ass and taking names when I saw how awful she looked after that!). So all of that....and none of the specialists, doctors, etc. thought, "hey, let's check her GI tract." WTF!?!? You check for a brain tumor, but not the stomach!?!?!? GAH!!!
It all started when she was diagnosed with celiac disease a few weeks ago. We were very excited because we thought FINALLY there's an answer to how sick she's been. A few diet changes, a little time and poof she'd be off the transfusions and back to her old self. But noooooo there has to be a goddamned 3"x5" tumor in her gut that's going to kill her. We already know it's an adenocarcinoma, which is the scary aggressive cancer, but the question now is where did it come from and is it anywhere else. FUCK!!!
Part of me is trying desperately to hold on to a zen calm (tripling my st johns wort intake helps), but just like with my own cancer, there is a part of me that is stomping my feet and shaking my fists at the heavens demanding to know why the fuck God would do this to me and my family again! Seriously. This is some fucked up shit. I just don't know what I'll do if she dies. I'm not ready for this. All I keep thinking about is that I'll be an orphan. Yes, I know I have my sisters and my niece, but she's my marmie god damn it! She taught me how to walk and talk (which I'm sure there's been more than a few times she regretted that one!) She sang me my first song and gave me a love of music. She taught me to read, to laugh and love. She's the only person in the world who put up with my bullshit, told me I was full of it, and still wanted to play tickle wars at the end of the day. With all the ups and downs of my life, mamma has been the one person to love me unconditionally, been there to dry my tears and the one shoving my fat ass back on the horse when all I wanted to crawl into a hole. She held my hand through my cancer, came with me to my appointments, and helped me to face the realities of my treatment. She cooked for me, called me every day, and gave me the courage to heal and move on. I can't face the reality that these may be the last holidays we have together.
I don't know what I"ll do without her.
Sunday, November 13, 2011
Monday, August 29, 2011
Thoughts on Motherhood
Most recently, the grotesque head of barrenness has been rearing. I'm well past the breaking down at restaurants, or stifling urges to indefinitely "borrow" my friend's babies. But the desire to be a mother is, at times, overwhelming. I've accepted that the experience of pregnancy and childbirth aren't meant to be. I know in my heart that somewhere out in the world is a little person who needs a mother as much as I need a child, but the hurdles to overcome are staggering at times.
I often ask myself, why do I want a child so badly? It's a crazy responsibility, and it's not like I'm married, or rich or anything like that. I don't hold a secret fetish for changing diapers, or being vomited on. Let's face it, they're germ-vectors, spewing forth the disease and contagion of the world. A good friend of mine once told me that she hadn't had a good nights sleep since the day before she gave birth. Anyone who has seen me low on sleep knows that to want to voluntarily consign myself to chronic sleeplessness is a sure sign of mental illness. Kids are sticky, they can embarrass you, they argue, they're all kinds of expensive, and don't get me started on merely just keeping up with the never-ending energy the little buggers seem to have. The fear of creepy-crawlers lurking behind bushes, or crazy drivers running red lights at the cross-walk is enough to make anyone with an ounce of sense give pause.
So why DO I want a child?
I want to be there to see the first smile. I want to soothe a fever and kiss boo-boo'd knees. I want to teach little Suzie how to ride her first bike. I want to show little Justin how to hold his fingers in the right position for the piano. I want to do back-to-school shopping and go to parent-teacher conferences. I want to lay in bed and teach Janie little hand games like my mother did. I want to see little Davie grow up to be a proper gentleman (I don't care what day and age it is, chivalry NEVER goes out of style!) I want to make lopsided birthday cakes with freakishly blue frosting (yes, Sophia, I remember...) I want to be sopping wet at bath time, and sing lullibies after reading Goodnight, Moon. I want to see the lightbulb of understanding as we try to decipher the latest math homework. I want to pass on my love of music and theater, and be there for all of the firsts in a child's life. I want to see my mom holding and loving my child, as only a proper Nanna can. I want to decorate the house for Christmas and share the child-like joy of the annual picture with Santa at Nordstrom.
In short, despite the plethora of drawbacks, I want to be a mother....and cancer has stolen that from me, or at the very least made it extremely difficult for these experiences to ever be mine. Fuck you cancer!
The post-cancer "halcyon" daze...err, days
Ok, I know in the grand scheme of all the blessings I've been given recently, I really don't have a right to complain. I seem to talk to a lot of women at work having cancer lately who are in a lot worse shape than I am. Even at the Crisis Line, I seem to be attracting all the cancer-related calls. Not long ago I had a call from a woman with a stage 3 cancer, and she expressed the same anger, hurt, fear that I remember feeling, and to some extent still feel. What made this call unique to me, was that she expressed anger at women who had lower stages of cancer than she did. She railed at the unfairness of those of us who were "lucky" enough to only have stage 1 or 2 cancer. She mourned the loss of her hair, and felt separate from the rest of the world. I felt and often still feel that same separateness. I know everyone around me empathizes, but unless you've experienced the trauma of a terminal illness (or in my case near-terminal), there's an unspoken understanding that you just can't know. I suppose the closest I could describe is for you to imagine you're the only human on a completely alien planet. You have a settled life, with alien friends and people around you. Now imagine, even with this life, there is a part of you that is, and always will be different. Then imagine the connectedness you feel when you happen to bump into another human on this alien world. Without using any words, there is an understanding that the aliens, no matter how thoughtful or understanding, can't quite grasp. That's what it feels like to talk with other women who have cancer. We don't need to use words to express ourselves. We just....know.
Saturday, August 20, 2011
Changes....
Yes, I am officially the worst blogger in the world. I can't believe it's been 2 months since I last posted! DOH!
So let's get all up to speed and stuff! Let's start with the hormones. Yes, I know I've talked about it before, but let's do a little recap, shall we?
My oncologist gave me an rx for premarin. As some of you know, this is a common estrogen replacement, which is short for PREgnant MAre uRINe. Yes. That's right folks. Horse piss. But not just ANY horse piss. No, PREGNANT horse piss. I'm sure you can imagine that my first instinct is to avoid contact with horse piss (knocked up or otherwise). Of course, I had to do my google-ing and research on it, and ethically I just couldn't bring myself to do it. The way the medication is made is by impregnating the mares as often as possible. Then, for the first 6 months of gestation, they're held in collection stalls, with limited movement/mobility with urine bags collecting all of the hormone filled yellow ambrosia. Then, just before they're about to foal, they're put out to pasture, have the foals, and then knocked up again as quickly as possible. And what happens to the babies, you might ask? As you might not know, there is a veritable glut of horses on the market, and often times these foals end up going to slaughter. Great. Not only would I be swallowing distilled horse piss every day, but then I get to have visions of baby horses being murdered.
Needless to say, I don't want to go that route. The downside is that the way my pharmacy communicated with my doctor, he declined the switch and left me having to figure out why. I ended up having to go through my primary care doctor (gawd I love that man!), who also had trouble getting in touch w/ the oncologist, but in the end, he switched me over to the estradiol. And since then, I haven't looked back! We started on the lowest dose, which made a huge difference, although I was still having some breakthrough hot flashes and mood changes. But for the past week or two, I've been at the higher dose...and it's pure nirvana!! I've had maybe 2-3 hot flashes TOTAL, and even they were pretty mild (compared to what I was having before where I thought sure my head was going to explode!)
In other news, I had my first followup with the oncologist and I'm still in remission! YAY! I was SOOOO nervous to get checked (who looks forward to getting a pap!?!) and I was terrified he would find something. It's amazing how, after all these months, that even the slightest twinge puts me in freak out mode. For the most part though, on a day to day basis, I'm really feeling great and just enjoying and loving being alive and relatively healthy (ok, yeah, I know, I need to drop a few...and when I say "few", I really mean a LOT!) lol!
So let's get all up to speed and stuff! Let's start with the hormones. Yes, I know I've talked about it before, but let's do a little recap, shall we?
My oncologist gave me an rx for premarin. As some of you know, this is a common estrogen replacement, which is short for PREgnant MAre uRINe. Yes. That's right folks. Horse piss. But not just ANY horse piss. No, PREGNANT horse piss. I'm sure you can imagine that my first instinct is to avoid contact with horse piss (knocked up or otherwise). Of course, I had to do my google-ing and research on it, and ethically I just couldn't bring myself to do it. The way the medication is made is by impregnating the mares as often as possible. Then, for the first 6 months of gestation, they're held in collection stalls, with limited movement/mobility with urine bags collecting all of the hormone filled yellow ambrosia. Then, just before they're about to foal, they're put out to pasture, have the foals, and then knocked up again as quickly as possible. And what happens to the babies, you might ask? As you might not know, there is a veritable glut of horses on the market, and often times these foals end up going to slaughter. Great. Not only would I be swallowing distilled horse piss every day, but then I get to have visions of baby horses being murdered.
Needless to say, I don't want to go that route. The downside is that the way my pharmacy communicated with my doctor, he declined the switch and left me having to figure out why. I ended up having to go through my primary care doctor (gawd I love that man!), who also had trouble getting in touch w/ the oncologist, but in the end, he switched me over to the estradiol. And since then, I haven't looked back! We started on the lowest dose, which made a huge difference, although I was still having some breakthrough hot flashes and mood changes. But for the past week or two, I've been at the higher dose...and it's pure nirvana!! I've had maybe 2-3 hot flashes TOTAL, and even they were pretty mild (compared to what I was having before where I thought sure my head was going to explode!)
In other news, I had my first followup with the oncologist and I'm still in remission! YAY! I was SOOOO nervous to get checked (who looks forward to getting a pap!?!) and I was terrified he would find something. It's amazing how, after all these months, that even the slightest twinge puts me in freak out mode. For the most part though, on a day to day basis, I'm really feeling great and just enjoying and loving being alive and relatively healthy (ok, yeah, I know, I need to drop a few...and when I say "few", I really mean a LOT!) lol!
Tuesday, June 28, 2011
A little recap
5 months ago I was dying from cancer, and 4 months ago today I had surgery, and am now cancer free. I never thought life would take me on such a wild journey. I won't lie, as you all know, it's been an incredibly difficult time in my life, but I also feel like I have so much more clarity on a visceral level of the things that are really important to me, and the things that used to be important just hold no appeal.
I look at my scars, although minimal and long since well healed, and I am reminded of the grief, loss, and pain that I've been through. I've been on the hormones now for a couple of weeks, and oh what glories! It's been wonderful to feel like my old self again - no more hot flashes, night sweats, minimal mood swings (is it really a mood swing if someone is pissing you off?)
Often times at work I talk with people who are also battling cancer. Most recently I talked with a woman who had only recently had surgery for cancer (different kind than mine), and even though I was her coach, the call became more about two women sharing a common experience of having our lives saved by surgery, but still facing the realities of post-cancer life. She cried, I got choked up. It truly showed me that it's the relationships we have with one another as human beings that's the fundamental purpose for life. Whether it's through conversation, making music, or even just being present to witness, it's what makes life, life.
I look at my scars, although minimal and long since well healed, and I am reminded of the grief, loss, and pain that I've been through. I've been on the hormones now for a couple of weeks, and oh what glories! It's been wonderful to feel like my old self again - no more hot flashes, night sweats, minimal mood swings (is it really a mood swing if someone is pissing you off?)
Often times at work I talk with people who are also battling cancer. Most recently I talked with a woman who had only recently had surgery for cancer (different kind than mine), and even though I was her coach, the call became more about two women sharing a common experience of having our lives saved by surgery, but still facing the realities of post-cancer life. She cried, I got choked up. It truly showed me that it's the relationships we have with one another as human beings that's the fundamental purpose for life. Whether it's through conversation, making music, or even just being present to witness, it's what makes life, life.
Sunday, June 5, 2011
The fart heard round the room
So last night I stayed up ridiculously late and went back to read my old blog posts. Boy, it's amazing how far I've come in the last 4 months!! I also learned that I should not be allowed to blog while under the influences of narcotics. What I thought was one of my funnier writings had been saved as a partial story, and then a cut/paste/vicodin drift mess. So here's the true story of the Best. Fart. Ever.
Mid afternoon of my first day after surgery, my much beloved choir peeps came for a visit (you guys rock!). It was a GREAT break from the total blur and haze of what the previous 24 hours had been (I also had a visit from my friend Chris, who brought me GOBS of the most AMAZING chocolate! Yum yum!) Now, trapping 4 choir peeps and a Grace in a room for too long, and inevitably, the issue of taking a walk to explore is gonna come up, and hence my 2nd adventure out of bed. I called the nurse to get unplugged from my 463 machines and extending 572 wires. This walk was mostly uneventful, although we did get shushed by several nurses (Come on, we're choir folk. We don't do quiet.) The end of this walk, was much more eventful than the first.
One of the main reasons they want you to be walking is because it helps your body to start get things moving along. So, before crawling back into bed, the urge for my first potty visit came. Under normal circumstances, this shouldn't be a big deal, right? I didn't think so, until I realized the hospital's floor plan was purposefully designed to promote the highest level of embarrassment for patients who have visitors. First, they have two little rooms, well, booths really, one for the shower, and one for the toilet. Both are designed for either very petite asians, children, and/or little people. So imagine my less than petite body, still not able to stand fully upright, hauling an IV pole while keeping the back of my gown closed from giving the choir peeps a view they'll never forget, trying to maneuver, all while having to pee (damn those nurses and their fluid push!) I'll be honest, a porta potty is bigger. Now imagine the pressure of having your first pee in a porta potty with your friends about 4ft away, all listening and formulating humorous jokes in their music addled brains.
Mid afternoon of my first day after surgery, my much beloved choir peeps came for a visit (you guys rock!). It was a GREAT break from the total blur and haze of what the previous 24 hours had been (I also had a visit from my friend Chris, who brought me GOBS of the most AMAZING chocolate! Yum yum!) Now, trapping 4 choir peeps and a Grace in a room for too long, and inevitably, the issue of taking a walk to explore is gonna come up, and hence my 2nd adventure out of bed. I called the nurse to get unplugged from my 463 machines and extending 572 wires. This walk was mostly uneventful, although we did get shushed by several nurses (Come on, we're choir folk. We don't do quiet.) The end of this walk, was much more eventful than the first.
One of the main reasons they want you to be walking is because it helps your body to start get things moving along. So, before crawling back into bed, the urge for my first potty visit came. Under normal circumstances, this shouldn't be a big deal, right? I didn't think so, until I realized the hospital's floor plan was purposefully designed to promote the highest level of embarrassment for patients who have visitors. First, they have two little rooms, well, booths really, one for the shower, and one for the toilet. Both are designed for either very petite asians, children, and/or little people. So imagine my less than petite body, still not able to stand fully upright, hauling an IV pole while keeping the back of my gown closed from giving the choir peeps a view they'll never forget, trying to maneuver, all while having to pee (damn those nurses and their fluid push!) I'll be honest, a porta potty is bigger. Now imagine the pressure of having your first pee in a porta potty with your friends about 4ft away, all listening and formulating humorous jokes in their music addled brains.
The blessed event happened without incident, until I went to stand up and the most wonderous sound erupted from my nether cheeks. It was a veritable thunderclap that echoed grandly around the tiny booth of the toilet room, and judging by the guffaws coming from outside, said echo was also heard beyond my four tiny walls. Now, let me back up a bit, and explain a little more about the awesome force and power of this fart. GoLytely has a wonderful way of emptying the bowels, so that all that is left is air. Surgery and the subsequent food I ate lead to a tremendous build up of gas, which, up until that point had been held stagnant in my belly. Ironically, walking helps your body to not only get things moving with the kidneys, but it naturally pushes gas out. Great. Just great. I survived the embarrassment, and made my way back to bed, secretly thrilled to death to have some of that gas and pressure released. Fortunately, my beloved comrades have had the grace to not mention it again (because we all know I wouldn't be so generous! lol!)
As the day wore on, my continued discomfort with the gas was beginning to reach epic levels. The pressure was forcing my intestines to push on my freshly operated on ligaments & tendons, to the point of pain surpassing the ibuprofen, vicodin AND morphine. Yet, try as I might, nothing was happening, no matter how I shifted in the bed. I complained to the nurse, hoping for some gas-x or tums or something to settle things down. She grinned the most devilish and evil grin a human being can muster and said, the best way to do it is to get up and walk. Wonderful. So, in an effort to get things moving as quickly as possible (seriously folks, extreme gas post op is AWFUL! Worse than bad chili gas.), I was off to my 3rd walk. 10 minutes later of shuffling up and down the halls with my IV pole, I felt a change. A wonderful, powerful warning to my brain that if I don't get back to my room ASAP there's gonna be a problem, followed swiftly by fully body blush of embarrassment. I made it to my room, and, if possible, an even louder Zeus-like thundering erupted than earlier with my friends. I was bent over the bed and was powerless to do anything but allow my body to just let go.
Now, I'm sure at this point, you're wishing I'd stop giving details, but honest to god, you know you're secretly chuckling. Fart stories make you laugh. ADMIT IT! Now, if sound of said fart wasn't so prodigiously loud, the length and duration is what made it truly something to remember. Now, for those of you not in the know, human intestines are roughly 24.5 feet long. Imagine, dear reader, the sound of 24.5 feet of pent up gas being released through a relatively small sphincter. Exactly. That's how profound this fart was. I actually felt my stomach deflating from the pressure release like a balloon. Oh such glories! Such joy! Seriously, this felt better than sex. Better than Ben & Jerry's. Better than sex with Ben & Jerry's.
Monday, May 30, 2011
Oh Happy Day!!
This past week was initially a blessed relief of menopause symptoms, and other than one super grumpy day, was almost (dare I say it), even keeled! I know, right!??!! LOL!
The highlight of my week was my visit to the oncologist to talk about everything. Wonder of wonders, and holy of holies, he said I'm good to take hormone replacement! NO MORE HOT FLASHES!!!! NO MORE MOOD SWINGS!!!! GLORIOUS!!!!! FABULOUS!!! WONDROUS!!!!! Seriously, I'm on cloud nine!!
Apparently there's been three separate university studies that have shown that there's no increased risk of returning cancer. AND there's evidence it reduces overall risks of cancer, esp. colon cancer (which is the cancer most closely associated with uterine cancer). Oh, and for those who haven't taken psychobiology of women, estrogen increases your energy level and decreases your appetite. H-E-L-L-O!!!!!
So now the debate is which kind of hormones to use: synthetic plant based, or the horse urine one. Now, biologically speaking, the horse urine one is the closest to human estrogen. My major problem with it is how they get it. Basically, it comes from pregnant mares and I have a REALLY hard time with how they get it. The horses are impregnated every year, kept in a stall for the first part of the pregnancy, with collection bags, for 6 months, and then put out to pasture to foal and get pregnant again for 6 months. Oh, and often times, the foals are sent to slaughter. It just seems like such an awful existence. So I'm very torn between using the med that has the highest chance of working versus the awful guilt and picture little baby horses being killed. I talked with the head pharmacist guy, and he said the synthetic one works just as well, although the dosing tends to be a little higher. And it's a LOT cheaper. So I'm pretty sure I want to use the synthetic one, but the only problem is that when I brought the script for the horse med, the pharmacy called the doc to see if he would switch it, and he wouldn't. So now I'm waiting to hear back to find out why....FML.
So for a few more days anyways, I'll be slightly cranky, with a side of sweaty hot flashes. But soon....oh so gloriously soon my long held fantasy of an almost normal life will be realized!!!
The highlight of my week was my visit to the oncologist to talk about everything. Wonder of wonders, and holy of holies, he said I'm good to take hormone replacement! NO MORE HOT FLASHES!!!! NO MORE MOOD SWINGS!!!! GLORIOUS!!!!! FABULOUS!!! WONDROUS!!!!! Seriously, I'm on cloud nine!!
Apparently there's been three separate university studies that have shown that there's no increased risk of returning cancer. AND there's evidence it reduces overall risks of cancer, esp. colon cancer (which is the cancer most closely associated with uterine cancer). Oh, and for those who haven't taken psychobiology of women, estrogen increases your energy level and decreases your appetite. H-E-L-L-O!!!!!
So now the debate is which kind of hormones to use: synthetic plant based, or the horse urine one. Now, biologically speaking, the horse urine one is the closest to human estrogen. My major problem with it is how they get it. Basically, it comes from pregnant mares and I have a REALLY hard time with how they get it. The horses are impregnated every year, kept in a stall for the first part of the pregnancy, with collection bags, for 6 months, and then put out to pasture to foal and get pregnant again for 6 months. Oh, and often times, the foals are sent to slaughter. It just seems like such an awful existence. So I'm very torn between using the med that has the highest chance of working versus the awful guilt and picture little baby horses being killed. I talked with the head pharmacist guy, and he said the synthetic one works just as well, although the dosing tends to be a little higher. And it's a LOT cheaper. So I'm pretty sure I want to use the synthetic one, but the only problem is that when I brought the script for the horse med, the pharmacy called the doc to see if he would switch it, and he wouldn't. So now I'm waiting to hear back to find out why....FML.
So for a few more days anyways, I'll be slightly cranky, with a side of sweaty hot flashes. But soon....oh so gloriously soon my long held fantasy of an almost normal life will be realized!!!
Saturday, May 21, 2011
GAAAAH!
Hormones really are a biotch! FUCK YOU HORMONES!
There. Got that off my chest. The ups and downs of the past week are borderline psychotic. Thankfully the pity party despair-fest earlier this week has given way to a freakish calm. I might even go so far as to say emotionally numb. Either that, or I'm feeling "normal" and have just forgotten what it's like.
Something new I've discovered about myself in the past few months is an inability to embrace full laziness like before. For example, today I stayed home from work out of sheer exhaustion, and rather than sleep, or actually relax, I cleaned, flipped the mattress, ironed the bed skirt....all kinds of ridiculous busy work. I mean, who the hell irons a bed skirt? Ok, so it was crazy wrinkly, and the pleats just weren't crisp, but still! This whole "productivity" drive is a bunch of crap!
Honestly, I can't think of anything witty, or funny, or even particularly snarky to write about. It's like this week has lead to a remarkably boring lull of everyday life. About the only thing remotely interesting is a blessed lull in hot flashes. I started drinking soy milk since I had read somewhere once that soy has properties that mimic estrogen in the body. Perhaps this has been a breakthrough?
Some women have fantasies of hot firemen, cops, soldiers, etc. Mine have been reduced to the dream of a day without hot flashes. FML.
There. Got that off my chest. The ups and downs of the past week are borderline psychotic. Thankfully the pity party despair-fest earlier this week has given way to a freakish calm. I might even go so far as to say emotionally numb. Either that, or I'm feeling "normal" and have just forgotten what it's like.
Something new I've discovered about myself in the past few months is an inability to embrace full laziness like before. For example, today I stayed home from work out of sheer exhaustion, and rather than sleep, or actually relax, I cleaned, flipped the mattress, ironed the bed skirt....all kinds of ridiculous busy work. I mean, who the hell irons a bed skirt? Ok, so it was crazy wrinkly, and the pleats just weren't crisp, but still! This whole "productivity" drive is a bunch of crap!
Honestly, I can't think of anything witty, or funny, or even particularly snarky to write about. It's like this week has lead to a remarkably boring lull of everyday life. About the only thing remotely interesting is a blessed lull in hot flashes. I started drinking soy milk since I had read somewhere once that soy has properties that mimic estrogen in the body. Perhaps this has been a breakthrough?
Some women have fantasies of hot firemen, cops, soldiers, etc. Mine have been reduced to the dream of a day without hot flashes. FML.
Thursday, May 19, 2011
I miss my uterus.
The last few days have just been a complete roller coaster of moods and hormone madness. Monday I was a honey badger* - I just didn't give a shit. Cancer was a fucking cobra that bit my ass, knocked me out, and I woke up and kept on eating that bitch. I was ready to take a bite out of anything/one that crossed my path and taking names later. Fortunately, I limited my contact with the outside world, so my futon and the palm of my hand bore the brunt of my wrath (note to self: watch where the hell you put your hand when drilling through wood.)
Tuesday, I felt like a naked mole rat staked out in the middle of the desert. In August. Covered in syrup. With a herd of hungry honey badgers on the horizon. Yeah, THAT kind of vulnerable. EVERYTHING made me all weepy and start crying. Kids walking to the library after school, watching the prom episode of Glee (admittedly, there were a few scenes that were cry-worthy), just stupid shit. Tonight, that same feeling of vulnerability has been magnified tenfold. It's a miracle I can still see straight, and we won't talk about the status of my poor nose after all the blowing I've done in the last hour.
So why do I miss my uterus? Because it was a part of me. We had a relationship. Every few weeks I'd get a "gentle" reminder of just how attached we were. This tiny 9mm body part was mine and it was part of my identity as a woman. Women around me talk about their periods or pregnancy, or their kids, and I've got absolutely nothing to say. I'm completely disconnected from the women around me. It's not fair that I had to sacrifice having children just so I could live to see this Christmas. I've been incredibly blessed to have some of the best medical care in the world, and I have the love of family and friends holding me up. At the same time, I feel like no one really understands what I'm going through. I don't even think *I* know what I'm going through. Every day at work, I have to hold it together. I'm pretty sure none of my coworkers knows that almost every night I come home and at the very least get teary eyed. My family means well, but at times I feel like they can't comprehend how hard this is. Even with the fear of the cancer coming back aside, I'm in incredibly deep mourning over babies that I'll never have and trying desperately to hold on to the idea that I'm somehow still a woman, and that there's any kind of hope that there's a man out there that could ever consider taking on this physically and emotionally scarred half-woman.
Yes, I know this post has been a GIANT pity party of one. But like I said, I'm a hot mess of menopause hormone hell, also known as womb rage.
*for those not familiar with the honey badger: http://www.youtube.com/watch?v=4r7wHMg5Yjg
Tuesday, I felt like a naked mole rat staked out in the middle of the desert. In August. Covered in syrup. With a herd of hungry honey badgers on the horizon. Yeah, THAT kind of vulnerable. EVERYTHING made me all weepy and start crying. Kids walking to the library after school, watching the prom episode of Glee (admittedly, there were a few scenes that were cry-worthy), just stupid shit. Tonight, that same feeling of vulnerability has been magnified tenfold. It's a miracle I can still see straight, and we won't talk about the status of my poor nose after all the blowing I've done in the last hour.
So why do I miss my uterus? Because it was a part of me. We had a relationship. Every few weeks I'd get a "gentle" reminder of just how attached we were. This tiny 9mm body part was mine and it was part of my identity as a woman. Women around me talk about their periods or pregnancy, or their kids, and I've got absolutely nothing to say. I'm completely disconnected from the women around me. It's not fair that I had to sacrifice having children just so I could live to see this Christmas. I've been incredibly blessed to have some of the best medical care in the world, and I have the love of family and friends holding me up. At the same time, I feel like no one really understands what I'm going through. I don't even think *I* know what I'm going through. Every day at work, I have to hold it together. I'm pretty sure none of my coworkers knows that almost every night I come home and at the very least get teary eyed. My family means well, but at times I feel like they can't comprehend how hard this is. Even with the fear of the cancer coming back aside, I'm in incredibly deep mourning over babies that I'll never have and trying desperately to hold on to the idea that I'm somehow still a woman, and that there's any kind of hope that there's a man out there that could ever consider taking on this physically and emotionally scarred half-woman.
Yes, I know this post has been a GIANT pity party of one. But like I said, I'm a hot mess of menopause hormone hell, also known as womb rage.
*for those not familiar with the honey badger: http://www.youtube.com/watch?v=4r7wHMg5Yjg
Monday, May 9, 2011
An Epiphany?
I heard someone say, "With enough hard work and dedication, dreams can become a reality." I know it may sound trite, and we've all been told similar things before, but for some reason, tonight it really resonates with me.
You see, even under normal circumstances, it's scary to take risks. In the past few years, I've spent a lot of energy challenging fears. I was terrified to go back to school, after working for several years. Once I was there, I challenged my perception of my abilities to be successful in the sciences. Transferring to Seattle U, I took on my insecurities about my intellect. When I started at UW, I was shaking in my boots, surrounded by 50k other students, and not knowing a soul really shook me up. It would have been easy to just hide away, get my degree and leave, completely unnoticed. But I took a risk, and threw myself into making friends and connections. Then came choir. Not only did I face my fear of music (performing that is), I met some AMAZING people who encouraged and empowered me, and hopefully will be lifelong friends. In the end, I even achieved my goal of performing a solo (take that stage fright!!!) I was scared to graduate, and yup, did that too. Afterwards, even with all the challenges of finding a job, I took risks in applying for jobs that challenged me, and perhaps I wasn't even qualified for. In the end, I ended up with a great company, actually using my degree. Facing all these fears and negative perceptions of myself had built up an incredible amount of confidence and self esteem. My next plans and goals were to get married, make babies and live happily ever after with a minivan and maybe a shitzsu.
Then I was diagnosed with cancer.
No matter what achievements you've made, goals you've met, or dreams you've carried through your life, absolutely nothing hits you like being told you're dying. Just like the tsunami in Japan, my entire world was wiped out with one phone call. It didn't matter that I'd sung my heart out, earned 2 degrees, or that I had a shit ton of future plans and goals ahead of me. It was shattered. I suddenly went from the world being an open playground, to being a virtual slave to my body's limitations. I had no real choices, other than to do radical, life altering surgery. The whole, "yea though I walk through the valley of the shadow of death..." thing has some serious SHIT HOLE tourist attractions. I recommend skipping it on your next vacation.
So what do you do when you have no confidence left, your dreams are shattered, and you're trapped in a whirling vortex of fear, panic and terror? How do you break the paralysis of panic?
So, *big ginormous deep breath*, my new challenge: GET MY FUCKING LIFE BACK!! Since Feb 2nd, I've dealt with the first part of that, namely, kicking cancer in the gonads. Physically, I'm healed, although menopause is gonna be an ongoing pain in the ass! I've got my job back, and financially pretty much back on track. What's lingering now is letting go of the fear, and to regain my confidence to set and meet goals. I guess, even more important, I need to figure out a whole new identity for myself. Great, good to know it's something simple, right?
You see, even under normal circumstances, it's scary to take risks. In the past few years, I've spent a lot of energy challenging fears. I was terrified to go back to school, after working for several years. Once I was there, I challenged my perception of my abilities to be successful in the sciences. Transferring to Seattle U, I took on my insecurities about my intellect. When I started at UW, I was shaking in my boots, surrounded by 50k other students, and not knowing a soul really shook me up. It would have been easy to just hide away, get my degree and leave, completely unnoticed. But I took a risk, and threw myself into making friends and connections. Then came choir. Not only did I face my fear of music (performing that is), I met some AMAZING people who encouraged and empowered me, and hopefully will be lifelong friends. In the end, I even achieved my goal of performing a solo (take that stage fright!!!) I was scared to graduate, and yup, did that too. Afterwards, even with all the challenges of finding a job, I took risks in applying for jobs that challenged me, and perhaps I wasn't even qualified for. In the end, I ended up with a great company, actually using my degree. Facing all these fears and negative perceptions of myself had built up an incredible amount of confidence and self esteem. My next plans and goals were to get married, make babies and live happily ever after with a minivan and maybe a shitzsu.
Then I was diagnosed with cancer.
No matter what achievements you've made, goals you've met, or dreams you've carried through your life, absolutely nothing hits you like being told you're dying. Just like the tsunami in Japan, my entire world was wiped out with one phone call. It didn't matter that I'd sung my heart out, earned 2 degrees, or that I had a shit ton of future plans and goals ahead of me. It was shattered. I suddenly went from the world being an open playground, to being a virtual slave to my body's limitations. I had no real choices, other than to do radical, life altering surgery. The whole, "yea though I walk through the valley of the shadow of death..." thing has some serious SHIT HOLE tourist attractions. I recommend skipping it on your next vacation.
So what do you do when you have no confidence left, your dreams are shattered, and you're trapped in a whirling vortex of fear, panic and terror? How do you break the paralysis of panic?
So, *big ginormous deep breath*, my new challenge: GET MY FUCKING LIFE BACK!! Since Feb 2nd, I've dealt with the first part of that, namely, kicking cancer in the gonads. Physically, I'm healed, although menopause is gonna be an ongoing pain in the ass! I've got my job back, and financially pretty much back on track. What's lingering now is letting go of the fear, and to regain my confidence to set and meet goals. I guess, even more important, I need to figure out a whole new identity for myself. Great, good to know it's something simple, right?
Saturday, May 7, 2011
Living with Terror
I wish I could have just one day where I didn't have to think about cancer. The grief and mourning of my sterility is easing, but always in the back of my mind is the thought, "What if it's back?" Every ache and twinge makes me wonder if it's cancer. The physical euphoria I felt after the surgery has long since gone, and now I almost feel back to how I did before surgery. What I can't figure out is whether this is because the cancer is back, or if it's the stress and near-paranoia of thinking about the cancer being back. There's a bittersweet edge to all my joys. The edge of desperation has ebbed, but cancer is always there. I can sometimes go a day or two without having moments of tears at the back of my throat, but most days I have to fight back the emotional flood. I know on the surface, a lot of people don't see the chaos and turmoil simmering underneath, and I know it's my usual way of dealing - to hide away my pain until I can process it later. But my little emotional hiding place is just bursting at the gills.
My logical brain tells me that all of this is part of the aftermath of the last few months catching up with me. From a psychological perspective, you could say that I'm finally in a place where I'm ready to start processing everything I went numb to after I was diagnosed. I did have a bit of a breakthrough this week, and have come to realize that I'm finally ready and in a place to join a support group and do some counseling. I've known that it's something I've needed to do for awhile, but at the same time, I wasn't ready to be open to help. All the time at work, I tell people that they need to quit smoking in their own time and space, and I guess the same goes for me in dealing with cancer. I called my oncologist this week, and got some referrals, and there's a retreat in September I'm DEFINITELY planning to go to. My next step on Monday is to find a therapist that can help me get all these crazy and wild thoughts and emotions in perspective and under control.
So, while I'm incredibly thankful to whatever powers that be that I have most of my life back, I know that my journey through cancer isn't over yet - even if the diseased cells are gone. I hope.
My logical brain tells me that all of this is part of the aftermath of the last few months catching up with me. From a psychological perspective, you could say that I'm finally in a place where I'm ready to start processing everything I went numb to after I was diagnosed. I did have a bit of a breakthrough this week, and have come to realize that I'm finally ready and in a place to join a support group and do some counseling. I've known that it's something I've needed to do for awhile, but at the same time, I wasn't ready to be open to help. All the time at work, I tell people that they need to quit smoking in their own time and space, and I guess the same goes for me in dealing with cancer. I called my oncologist this week, and got some referrals, and there's a retreat in September I'm DEFINITELY planning to go to. My next step on Monday is to find a therapist that can help me get all these crazy and wild thoughts and emotions in perspective and under control.
So, while I'm incredibly thankful to whatever powers that be that I have most of my life back, I know that my journey through cancer isn't over yet - even if the diseased cells are gone. I hope.
Monday, May 2, 2011
Strength isn't always physical
I've never thought of myself as a particularly weak person. My mom will tell you I came out strong willed, with my own unique Grace way of doing things. As an adult, I've made my share of mistakes, but I've always been independent and self sufficient. Having cancer, and the resulting surgery has been incredibly humbling, but it's also given me a steel strength I didn't have before.
The humility has had to come both from emotional and physical sources. From a physical side, the first big slap of modesty flew out the window with the physical inability to care of myself. There's something about having people poking and prodding you, and really not having any way to care for yourself that makes you realize just how vulnerable you are as a human being. Having any sense of modesty stripped away as you're being bathed and wiped is embarrassing, but it's also strengthening. I actually didn't die of embarrassment and now I know that it's not as bad as I thought it would be, which, in a way made me confront a common human fear of being physically helpless.
Of course, that physical weakness has totally gone away (thank goodness! LOL!), but I feel like I have another strength that has developed that wasn't there before. I regularly tell myself, if I can kick cancer, I can do anything. It's not a superwoman invincibility complex, but more of a calm confidence that no matter what challenges I face in the future, none of them are going to be as terrifying and stressful as dealing with cancer has been. I saw my pcp a week or so ago to go over how to deal with menopause, and I told him how great I'd been feeling since the surgery, like I was on a high. He said, "Grace, there's very few things that someone your age faces that is as stressful as dealing with cancer. It's normal that when that stress is taken away, that you feel the way you do." Since then, I think my mood has started to swing back down to earth, and possibly slightly depressed, but I keep holding on to the idea that as long as the cancer doesn't come back, I can still achieve all the goals I have for myself.
It's really hard to describe what all the emotional impact of having cancer has done to me. I'm feeling like I'm finally in a place to start being able to deal with the fallout of cancer, and I'm still going through the grief process, which seems to ebb and flow. But it's really hard to do it alone, and I think I'm finally ready to join a support group and get some counseling to get it figured out. I know people told me right away to do that, but to be honest, I just wasn't ready to start coping, I was too busy just worrying about surviving. Now that my survival seems to be mostly assured, it's like my psyche is saying, ok, now it's safe to put your guard down and let yourself feel everything.
As hard as things have been emotionally, I'm just so glad to be feeling anything, even if it is sadness or fear sometimes. The numbness of those weeks after I was diagnosed was necessary, but not a place I ever want to be again.
The humility has had to come both from emotional and physical sources. From a physical side, the first big slap of modesty flew out the window with the physical inability to care of myself. There's something about having people poking and prodding you, and really not having any way to care for yourself that makes you realize just how vulnerable you are as a human being. Having any sense of modesty stripped away as you're being bathed and wiped is embarrassing, but it's also strengthening. I actually didn't die of embarrassment and now I know that it's not as bad as I thought it would be, which, in a way made me confront a common human fear of being physically helpless.
Of course, that physical weakness has totally gone away (thank goodness! LOL!), but I feel like I have another strength that has developed that wasn't there before. I regularly tell myself, if I can kick cancer, I can do anything. It's not a superwoman invincibility complex, but more of a calm confidence that no matter what challenges I face in the future, none of them are going to be as terrifying and stressful as dealing with cancer has been. I saw my pcp a week or so ago to go over how to deal with menopause, and I told him how great I'd been feeling since the surgery, like I was on a high. He said, "Grace, there's very few things that someone your age faces that is as stressful as dealing with cancer. It's normal that when that stress is taken away, that you feel the way you do." Since then, I think my mood has started to swing back down to earth, and possibly slightly depressed, but I keep holding on to the idea that as long as the cancer doesn't come back, I can still achieve all the goals I have for myself.
It's really hard to describe what all the emotional impact of having cancer has done to me. I'm feeling like I'm finally in a place to start being able to deal with the fallout of cancer, and I'm still going through the grief process, which seems to ebb and flow. But it's really hard to do it alone, and I think I'm finally ready to join a support group and get some counseling to get it figured out. I know people told me right away to do that, but to be honest, I just wasn't ready to start coping, I was too busy just worrying about surviving. Now that my survival seems to be mostly assured, it's like my psyche is saying, ok, now it's safe to put your guard down and let yourself feel everything.
As hard as things have been emotionally, I'm just so glad to be feeling anything, even if it is sadness or fear sometimes. The numbness of those weeks after I was diagnosed was necessary, but not a place I ever want to be again.
Saturday, April 23, 2011
STOP THE MENOPAUSE ROLLERCOASTER!!!
I want off!!!!
Physically, I'm still feeling great - tons of energy, boobs haven't fallen, no bald spots, haven't developed a dowager hump....but the hormone swings are INSANE! Since the surgery, they've mostly gone away, with just the odd mild flushing now and again. But this week....holy crap! Imagine your worst pms EVER: bloaty, cranky, eating everything in sight....now add near constant severe hot flashes. Twenty four seven. Plus my job requires that I be polite and professional. My tongue biting skills have been put to the test this week! LOL! Then today - poof, nearly normal again. The human body will ALWAYS mystify me!
On a different note, as you all know, the whole sterile/infertile thing has been a pretty rough blow. The full acceptance is coming, slowly but surely, and I've reached a point where I don't start crying after I see every baby or toddler. Sometimes, though, it just hits me out of the blue. Like yesterday on the bus was a little boy (maybe 18mo?), who I suspect has some kind of cancer, given the lack of hair and eyebrows. The whole ride, I was able to just enjoy watching him wiggle around his mom's lap. Then a girl (who's mixed like me) got on with a little girl (maybe 2 1/2?) and I gave her my seat (the super late bus was uber crowded). I was suddenly overwhelmed with emotion, and almost started crying. But I will say that the emotional hit wasn't nearly has intense as it was just a few weeks ago. I know time heals all wounds, and I'm thankful that this one isn't the festering open gash it was after my diagnosis.
I guess with this new knowledge of where my headspace is at, I should let you all know that I've decided to adopt a foster child. For those of you that visited me in the hospital, I might have mentioned it in my lovely narcotic haze, but I'm sure none of you took it seriously. But I guess subconsciously I knew it was my plan, but hadn't really let myself in on it yet. This week I got in touch with DSHS and now have a mentor/contact to help me through the process. Now don't go all getting your panties in a bunch, I'm not planning to get a child imminently, I'm just planning ahead, finding out what I need to do, and hopefully around the end of the year/beginning of next year I'll be in a place to bring a new little one home, and realize my dream of being a mommy.
So, other than that, it was just another week of work....
Physically, I'm still feeling great - tons of energy, boobs haven't fallen, no bald spots, haven't developed a dowager hump....but the hormone swings are INSANE! Since the surgery, they've mostly gone away, with just the odd mild flushing now and again. But this week....holy crap! Imagine your worst pms EVER: bloaty, cranky, eating everything in sight....now add near constant severe hot flashes. Twenty four seven. Plus my job requires that I be polite and professional. My tongue biting skills have been put to the test this week! LOL! Then today - poof, nearly normal again. The human body will ALWAYS mystify me!
On a different note, as you all know, the whole sterile/infertile thing has been a pretty rough blow. The full acceptance is coming, slowly but surely, and I've reached a point where I don't start crying after I see every baby or toddler. Sometimes, though, it just hits me out of the blue. Like yesterday on the bus was a little boy (maybe 18mo?), who I suspect has some kind of cancer, given the lack of hair and eyebrows. The whole ride, I was able to just enjoy watching him wiggle around his mom's lap. Then a girl (who's mixed like me) got on with a little girl (maybe 2 1/2?) and I gave her my seat (the super late bus was uber crowded). I was suddenly overwhelmed with emotion, and almost started crying. But I will say that the emotional hit wasn't nearly has intense as it was just a few weeks ago. I know time heals all wounds, and I'm thankful that this one isn't the festering open gash it was after my diagnosis.
I guess with this new knowledge of where my headspace is at, I should let you all know that I've decided to adopt a foster child. For those of you that visited me in the hospital, I might have mentioned it in my lovely narcotic haze, but I'm sure none of you took it seriously. But I guess subconsciously I knew it was my plan, but hadn't really let myself in on it yet. This week I got in touch with DSHS and now have a mentor/contact to help me through the process. Now don't go all getting your panties in a bunch, I'm not planning to get a child imminently, I'm just planning ahead, finding out what I need to do, and hopefully around the end of the year/beginning of next year I'll be in a place to bring a new little one home, and realize my dream of being a mommy.
So, other than that, it was just another week of work....
Thursday, April 14, 2011
Giving the Grim Reaper a pimp slap
You know how they say time heals all wounds? I haven't figured out yet whether this is true, and those wounds heal to become various scars, or if the fear, terror, relief and all the other emotions that have come with cancer are simply going to be a part of my life.
I had a close friend who's wife passed away about a year and a half ago. One of the things I told him was that it's not a question of getting your old life back, but that it's finding a new normal. Well, I'm having a bitch of a time finding my new normal. Now, don't get me wrong, right now things in my life are going really well. Physically I feel 10 years younger. I wake up in the mornings, and not grumpy. Not even a little. I haven't had coffee since the surgery, I'm doing stairs at work, no more crazy intense cravings. I'm genuinely feeling, dare I say it, happy!
The doctor officially says I'm in remission and based on the pathology report from the surgery, he's not recommending radiation followup therapy. My consult with the geneticist let me know that I'm not at increased risk of colon cancer (the other cancer closely associated w/ uterine cancer), and I have only a slightly higher risk of breast cancer than the general population. My incisions are healed, and even the hot flashes are decreasing in frequency and intensity. The doc even said I was clear to resume all "activities" (bow chicka wow wow!) I'm even starting to feel relaxed enough to start making plans for the future.
So why do I feel like the other shoe is gonna drop?
There's a big part of me right now grasping on to any happiness - a cute purse on shopgoodwill.com ( it's like crack for shopaholics!), the warmth of the spring sun, head butts and snuggles from Tony the Terrible Tom. Simple time spent talking with my mom is suddenly the most precious thing in the world. I tell myself, enjoy it now, because if the cancer comes back, you're shit outta luck. I have to admit it. I'm scared to death that the cancer will come back. For the next 2 years, I get quarterly pap smears (and if you don't like the annual ones, try every three months!) . Then I get to jump up to every 6 months for 3 years. I've got 5 years before I can relax and feel a little more like everyone else.
I think part of why I'm feeling so on edge tonight is that I had a conversation tonight with someone who is battling cervical cancer. As we talked, she said that she chose radiation because she still wanted to have kids. It felt like a kick in the stomach. Every day I'm reminded that I'm not a normal woman. 34 year olds are not supposed to be concerned about bone density and hot flashes. Honestly, I don't even really have wrinkles yet (although I'm secretly convinced my boobs are shrinking.) Even though she and I are having different treatments (she's doing chemo & radiation), she still has hope of a pregnancy. No matter how much sexy time I make, turkey baster donations from friends, or even if I hold up a sperm bank, there's no physically possible way for me to conceive.
So here I am, physically and mostly mentally feeling the top of my game. Financially I'm doing well, and I'm surrounded by friends and family who love me. But the one thing I'll never forgive cancer for is for taking away my belief in hope (oh yeah, and for turning my world upside down.)
So to death, whom I've soundly given a bitch-wheres-my-money pimp slap to, you can't have me for a few more years. And to cancer - I'm warming up my other pimp hand for February 28th, 2016.
Ok, so maybe I'm just over tired and should really just go to bed...
Tuesday, April 5, 2011
Ahhh...the warm afterglow of recovery...
It's hard to believe that a month ago I was dying, and today I'm back to work, and physically almost completely recovered (except for this last, and biggest, pesky little incision that sits right where ALL of my pants sit and rub it.)
In reality though, even while my deep desire to get my life back is coming true, the emotional wounds aren't healing quite as quickly and easily as the surgery incisions are. I wouldn't say it's depression, because honestly, I haven't felt this good in a long time. In some ways, it's a bit like riding a roller coaster, one moment I'm flying high feeling wonderfully content with where things are, and then in an instant I'm completely overwhelmed by the littlest thing. Last week, at a family breakfast, everything was going great. Then a couple was seated next to us who had a little one (maybe 5-6mo old?). It took everything in me to avoid watching them. When the baby started to get fussy and cry, my sister (who was sitting across from me) and I couldn't help but look over. We made eye contact with each other, and while her face read "Omg, HOW CUTE!", I crumpled and started crying. In the middle of a busy restaurant, with everyone there. My sis came over and wrapped me in a warm hug until I was able to pull it together, but I realized that the emotional trauma of this was finally catching up to me. (On a side note, it's amazing how we unconsciously and naturally repress emotions until we're ready to cope with them.)
Afterwards, I was completely confused and had no idea why just seeing a random baby would turn me in to a puddle of despair. There's no rational reason why just thinking about babies is making my otherwise mostly sunny world and turning it into a hot flash ridden shadowland. Mom and I talked about it, and she simply said, "Honey, you're grieving." By her saying that, the puzzle pieces clicked into place and I realized that what I thought was completely nutty, is actually totally normal. Who wouldn't grieve having to give up something and primal and fundamental as the ability to reproduce? Yeah, yeah, yeah, adoption, surrogates, blah blah blah. And yes, I'm most definitely going to do it in the next year or two, but there's a big difference between choosing to adopt and having to. Even though the physical scars are healing, I know that I still have a LONG road ahead of me before I'm recovered.
Since that talk with mom, I've tried my best to acknowledge these feelings when they come up. I think the thing that scares me the most is that I completely see how a woman could do something crazy, like kidnap a baby. Now don't go getting all freaked out and clutch your children, you all KNOW I haven't totally cracked, but I can see now, more than ever before, how the despair and grief could make someone snap. I haven't been around any of my friends kids yet, and I haven't held a baby at all since the diagnosis. I'm pretty sure the first time will be hard, and I'll probably start crying, but you know, deep down inside, I feel strong. I've had to give myself permission to feel all the things that are going to come up (even if they don't make sense) Honestly, it's the only way I can see to ever grow past it.
In reality though, even while my deep desire to get my life back is coming true, the emotional wounds aren't healing quite as quickly and easily as the surgery incisions are. I wouldn't say it's depression, because honestly, I haven't felt this good in a long time. In some ways, it's a bit like riding a roller coaster, one moment I'm flying high feeling wonderfully content with where things are, and then in an instant I'm completely overwhelmed by the littlest thing. Last week, at a family breakfast, everything was going great. Then a couple was seated next to us who had a little one (maybe 5-6mo old?). It took everything in me to avoid watching them. When the baby started to get fussy and cry, my sister (who was sitting across from me) and I couldn't help but look over. We made eye contact with each other, and while her face read "Omg, HOW CUTE!", I crumpled and started crying. In the middle of a busy restaurant, with everyone there. My sis came over and wrapped me in a warm hug until I was able to pull it together, but I realized that the emotional trauma of this was finally catching up to me. (On a side note, it's amazing how we unconsciously and naturally repress emotions until we're ready to cope with them.)
Afterwards, I was completely confused and had no idea why just seeing a random baby would turn me in to a puddle of despair. There's no rational reason why just thinking about babies is making my otherwise mostly sunny world and turning it into a hot flash ridden shadowland. Mom and I talked about it, and she simply said, "Honey, you're grieving." By her saying that, the puzzle pieces clicked into place and I realized that what I thought was completely nutty, is actually totally normal. Who wouldn't grieve having to give up something and primal and fundamental as the ability to reproduce? Yeah, yeah, yeah, adoption, surrogates, blah blah blah. And yes, I'm most definitely going to do it in the next year or two, but there's a big difference between choosing to adopt and having to. Even though the physical scars are healing, I know that I still have a LONG road ahead of me before I'm recovered.
Since that talk with mom, I've tried my best to acknowledge these feelings when they come up. I think the thing that scares me the most is that I completely see how a woman could do something crazy, like kidnap a baby. Now don't go getting all freaked out and clutch your children, you all KNOW I haven't totally cracked, but I can see now, more than ever before, how the despair and grief could make someone snap. I haven't been around any of my friends kids yet, and I haven't held a baby at all since the diagnosis. I'm pretty sure the first time will be hard, and I'll probably start crying, but you know, deep down inside, I feel strong. I've had to give myself permission to feel all the things that are going to come up (even if they don't make sense) Honestly, it's the only way I can see to ever grow past it.
Monday, March 14, 2011
Insurance Bureaucracy and Narcotic Hoops
For the most part, I have to say that I'm very satisfied with how smoothly everything has gone with my health insurance in terms of my care for the cancer. Group Health has done all the approval paperwork, referrals, etc. and I haven't had to do anything. The only quirky thing that's come up is with my medications.
Now, one would think that if I had surgery at an authorized facility outside GH, it would be ok to get related medications at said facility, right? Yeah, apparently not. To give a little background, no one told me an exact discharge time from the hospital, and frankly, I was happily addicted to the little red nurse call button, so I hadn't really arranged a set time to be picked up by my sister. Around 6pm or so, one of the nurses came in, went over my discharge papers and gave me the all clear to head home. Oh yeah, and I wouldn't have any nursing care after 7pm. BUMMER! It was at this time that I was told that I'd have to pick up my pain medication at a Group Health pharmacy, rather than get it from the in-house pharmacy at Virginia Mason. I knew both the downtown and northgate clinics closed at 5, so the only way to get it would be at the main pharmacy. After making a phone call, it was discovered that it closed at 7:30. Under normal circumstances, it's maybe a 10 min drive from VM to GH, so I wasn't too worried about it. Until....
I called my sister's place, and they were JUST getting dinner settled (with 3 kids, this is no small feat!) and she said she'd eat quickly and then come get me. As I watched the clock tick closer and closer to 7:00, I started to get a little itchy. I talked w/ the nurses who faxed my rx over to GH, and gave me the paper copy, in the hopes the pharmacy could have it ready to go when I presented the hard copy. They had already called for the hospital transport to bring me downstairs, and by ten after seven, my sister had been waiting downstairs for almost 15 minutes, and I was still 3rd on the list to get a wheelchair escort. Of course by this time, I was pretty mobile, packed and ready to go (although I was still stoned out of my mind and slow as molasses in January.) Because of the absolute NECESSITY for me to have my pain meds (duh!), finally one of the nurses said screw it, and took me down herself. She grabbed my bag and off we went to the elevator bay. The most convenient patient pick up spot was closed for construction (ironically the same day as my surgery), so I can imagine how funny it looked for a nurse with a mission and a gym bag being following by a grinning, near drooling patient shuffling along in pink scottie dog jammie pants and flip flops, winding through the halls of the hospital. We finally made it to one of the lesser known/daytime use only entrances and it was like walking onto 520 during rush hour. Apparently I wasn't the only patient being released, and there was a whole host of cars waiting. This explained why I had been waiting for over 45 minutes for someone to bring me down.
I got into my sister's car and off we went to GH as quickly as possible. We arrived with just 5 minutes to spare, and I shuffled to the pharmacy in my flip flops and jammie pants, armed with the hard copy of my script. After a few minutes, I was called to the window, slid my script under the glass, and expected to be handed my vicodin so I could go home to recover. Now, keep in mind I was still less than 48 hours post-op, had just been released from the hospital, and here I am, standing at the pharmacy window, stoned out of my gourd. The initial guy was cool, took my script and he acknowledged that the pills were waiting. YAY! Then he said that before they could give me the pills, a pharmacist would have to speak with me. Not yay.
Now, you'd think on a Tuesday night, now 10 minutes past closing, I wouldn't have to wait. But oh, dear friends, how wrong you would be! There was one guy ahead of me, and another woman who came in just a minute before the pharmacy closed. Oddly enough, both of them were helped and on their way out before me. After waiting several minutes, I began to lose my ability to stand upright, and thankfully the pharmacy window had a nice strong ledge for me to lean on. Just imagine the sight: strange woman in jammie pants and flip flops, clearly stoned, with all kinds of recent needle marks up and down both arms (from IV's, people - I'm SO not a junkie! ), inpatient bracelets, barely able to stand, wanting to pick up narcotic pain medications. Add to this, my doctor had written two different directions for the meds. Yeah, that didn't set off any kind of warning bells!
The pharmacist came to my window and, perplexed about the prescription's directions, began to quiz me about how I was told to take it. By now, I'd been standing for nearly 20 minutes, and was getting dangerously close to just curling up on the floor for a nap. She then wanted to give me a run down of how to take the pills, side effects, things to watch out for, don't drive while taking the pills, blah blah blah blah. FINALLY she handed over the bottle, and I flip flopped my way back to the car, where I was whisked home, and got myself settled in for a few weeks of recovery.
Friday, March 11, 2011
The longest walk EVER
Before you read the rest of this story, you must click this link (http://www.youtube.com/watch?v=2dQ5c5SIYnc ) and allow it to be your background music as you go with me on my journey! And feel free to hit repeat so you can truly revel in the awesomeness of this song!
I'm sure most of you dear readers have never had a hysterectomy, or major lower abdominal surgery, but I can tell you it's a crazy bizarre feeling to have all your organs, especially your intestines, shift around in new ways. My belly felt like it was hanging with tension. I guess if you wanted to really understand, imagine a half filled water balloon being dangled in mid air by it's top. Even though I wasn't feeling any pain, I was afraid to stand fully up to my proper 5'6" height. All in all a very curious feeling.
My first walk was low/no pressure, and the nurse said it was up to me to decide how far I wanted to go. Once I'd made it to the door of my room, I scanned either end of the hall and realized there weren't any real halfway points since the nurses station was one door down from me. I set my goal on the emergency exit door at the shorter end of the hall. For those few minutes, the entire scope of my world was oriented on two things: placing my palm on that door, and making sure I didn't trip over the catheter hanging down my leg. I know, TMI and Ewwww! Step by painfully slow step, I did the old lady hag shuffle down the hall, with the nurse ready to grab my free arm in case I started to go down. With the passing of each room, I glanced in to see what other patients were experiencing, and for the most part they were either empty or had people sleeping. As touching the emergency exit door became more and more of a reality, it suddenly occurred to me that although my end goal was in sight, I was going to have to make the return trip back to my room. Damn, why didn't I think of that ahead of time! DOH! *forehead smack*
Finally, I reached the end of the hall, slapped my palm on the door (secretly hoping to set off some secret alarm!), shuffled around a 180, and looked down a hallway that had easily grown exponentially longer than when I first started my journey. On a side note, the song running through my head through all this was The Greatest Adventure (of which you are currently listening to if you followed my instructions at the beginning of this entry. If you haven't, then you're a poopstick and need to click it now, and start reading again from the beginning.) The walk back to my room was surprisingly uneventful - no face plants or tripping over the catheter. The worst part of the whole walk was at the end when, weak, exhausted and only wanting to crawl back into bed (even with my legwarmers), I had to feebly hang on to my sweet blessed IV pole while the nurse straightened up my bed. Finally she was finished and with the same herculean effort it took to stand up, I slowly eased my way back into a blissful prone position. Another 20 minutes to hook me back up to all my equipment, and I was able to get back to my woodstock-like drug haze.
Wednesday, March 9, 2011
On Catheters and the Morning After
What do hospitals and the military have in common? Both have strict schedules. VERY strict schedules. Especially for post-op patients. And my doctor, being a military man is VERY particular about his patients and their post-op care, even more so than other doctors (according to the RN gossip mill!) Overall, things post-op were going very well, I has happily drugged out of my gourd on anesthesia, morphine, and vicodin. Then, as time went by, things took a dark and ugly turn. With every shift change, the new staff would come in and introduce themselves. With the nightshift, I knew would come a challenge: My own personal Nurse Ratchett*. Now, don't get me wrong, I think she's an amazing nurse, and actually, towards the end of her shift, we were joking around. However, it was her charge to make sure my vitals were taken every 2 hours by the tech. Oh yeah, and one of the post-op tools is to use this funky breathing machine where you inhale slowly, and have to get the little blue doo-hickey between the blue arrows and the other blue thingamabob up to a certain measured level (the purpose of this is to help patients use their lower lungs to keep pneumonia from setting in.) As with the vitals, I had to do 10 reps of this every 2 hours. All night long. And Nurse R wasn't about to let me just sleep in my drug haze either! Now, for the most part, I was in/out on Facebook and Frontierville, so these 2 hour checks weren't too bad. Until 6am.
I don't remember the 4am check, but I knew when Nurse R woke me up at 6am, I had been sleeping for a good stretch of time. Oh yeah, and I f'uckin' HATE mornings. Ask anyone! My mom will testify with her hand on a bible, torah, quran, *insert sacred text here*, that at no point in my life have I EVER done well with mornings. To the point where she should pour water on my face to get me up, and ice cubes down my jammies because I refused to get out of bed. With that in mind, I'm sure you can imagine how much I loved being woken up at 6am after everything that had happened the day before. Add to this - Nurse R informed me it was time to take out my catheter, per MD orders (damn him and his post-op schedule!).
Let me first say, that having a catheter in when you're stoned out of your gourd in bed is AWESOME! Never get the urge to go, and you can just lay there and enjoy the buzz without the hassles or inconvenience of going to the bathroom. The downside of catheters (and maybe this is just a woman thing), is that walking w/ a catheter is just weird! I don't know how you guys do it - stuff dangling between your legs. Can you say, AWKWARD! Maybe it's because I was a first-timer, but seriously guys, WTH!??! It's just cumbersome and bizarre!!
Ok, enough of a tangent. So Nurse R comes in at 6am, with her happy cheery its-the-end-of-my-shift-so-don't-give-me-any-shit way, and announces that it's time to take out the catheter. Honestly, the process itself isn't a big deal and didn't hurt at all (yay for short urethras!) Having it done at 6am when I'm at my peak grumpiness = not a good situation. Of course I announced my displeasure and in very mom-like fashion, was promptly told to stop whining. It was epic awesomeness. Seriously, Nurse N even gave me the mommy glare. And yes, I totally deserved it, because in my completely stoned and narcotic addled brain, the only way I could articulate my displeasure was to whine. Like a 3 year old being dragged away from her bowl of ice cream at the circus as she's about to get an elephant ride. After being told to, in essence, shut my pie hole, the grown up in me woke up and took hold and realized that I hate whiners above all, and here I was on the verge of an epic toddler meltdown. After that, things went smoothly, it only took a few minutes and I was allowed to go back to sleep to the gentle whirring of my leg warmer's motor gently squeezing my right calf....
*Just to clarify, I think she's an awesome nurse - extremely capable, professional, efficient, and clearly knows what she's doing (which, to me inspires a lot of trust and confidence). But she's also very strong willed (like me) and has a take-charge authoritative presence, which as mom will testify on a pile of sacred texts is not always the best mix with my personality. Add to this a shit-ton of narcotics, and I think my perception of her is probably a little skewed. Like I said, we actually ended up joking around a bit - I'm sure she'd be a kick to shoot back a few whiskeys with! LOL!
I don't remember the 4am check, but I knew when Nurse R woke me up at 6am, I had been sleeping for a good stretch of time. Oh yeah, and I f'uckin' HATE mornings. Ask anyone! My mom will testify with her hand on a bible, torah, quran, *insert sacred text here*, that at no point in my life have I EVER done well with mornings. To the point where she should pour water on my face to get me up, and ice cubes down my jammies because I refused to get out of bed. With that in mind, I'm sure you can imagine how much I loved being woken up at 6am after everything that had happened the day before. Add to this - Nurse R informed me it was time to take out my catheter, per MD orders (damn him and his post-op schedule!).
Let me first say, that having a catheter in when you're stoned out of your gourd in bed is AWESOME! Never get the urge to go, and you can just lay there and enjoy the buzz without the hassles or inconvenience of going to the bathroom. The downside of catheters (and maybe this is just a woman thing), is that walking w/ a catheter is just weird! I don't know how you guys do it - stuff dangling between your legs. Can you say, AWKWARD! Maybe it's because I was a first-timer, but seriously guys, WTH!??! It's just cumbersome and bizarre!!
Ok, enough of a tangent. So Nurse R comes in at 6am, with her happy cheery its-the-end-of-my-shift-so-don't-give-me-any-shit way, and announces that it's time to take out the catheter. Honestly, the process itself isn't a big deal and didn't hurt at all (yay for short urethras!) Having it done at 6am when I'm at my peak grumpiness = not a good situation. Of course I announced my displeasure and in very mom-like fashion, was promptly told to stop whining. It was epic awesomeness. Seriously, Nurse N even gave me the mommy glare. And yes, I totally deserved it, because in my completely stoned and narcotic addled brain, the only way I could articulate my displeasure was to whine. Like a 3 year old being dragged away from her bowl of ice cream at the circus as she's about to get an elephant ride. After being told to, in essence, shut my pie hole, the grown up in me woke up and took hold and realized that I hate whiners above all, and here I was on the verge of an epic toddler meltdown. After that, things went smoothly, it only took a few minutes and I was allowed to go back to sleep to the gentle whirring of my leg warmer's motor gently squeezing my right calf....
*Just to clarify, I think she's an awesome nurse - extremely capable, professional, efficient, and clearly knows what she's doing (which, to me inspires a lot of trust and confidence). But she's also very strong willed (like me) and has a take-charge authoritative presence, which as mom will testify on a pile of sacred texts is not always the best mix with my personality. Add to this a shit-ton of narcotics, and I think my perception of her is probably a little skewed. Like I said, we actually ended up joking around a bit - I'm sure she'd be a kick to shoot back a few whiskeys with! LOL!
Friday, March 4, 2011
A GoLytely Addendum
As I'm sure you can imagine, I made sure to comment to my doctor the horrors and sadistic awfulness of a colon cleanse. In his wonderful way of straight faced humor, he told me that GoLytely was named and invented by a famous intestinal neurosurgeon named Dr. Crapper. Yes. Dr. Crapper from Great Britain. I swear I'm not making this up! He's some british lord and descended from the inventor of the modern toilet. Hence, why we call it the Crapper. Oh the things you learn in pre op!
The First Meal and the Worst Legwarmers EVER!
As recovery continued, and the anesthesia began to wear off, I was beginning to become more conscious than not (although, let's be honest, the conscious bits weren't really totally self aware moments). One of the nurses showed me how to use the bed remote control with that lovely red button that would call someone to my room right away (oh I miss that button now!!) I made sure to have my laptop and cell charger all set up before my family left (I mean really, you all didn't think I'd actually be mindlessly "resting" did you!?!?), so as the nurse started to explain how just one push of a button controls the tv, I looked at her, indicated towards my pile of technology on the table, and said, "Yeah, I think I've got this one." She chuckled and left me to it. I was given the land line (yes, a land line. corded. with actual lit buttons.), and a menu and told to order whatever I wanted. Well of course after the wonders and joy of the GoLytley, my brain was saying it was time for some foodage, but the narcotics kept any actual appetite away. After spending the better part of an hour staring at the menu, trying to decide what to order (yes, a medicated Grace, is an easily distractable and ADD Grace.) I decided on the fruit/cheese plate and the fish n chips, as the nurse said to get whatever I want. When the food arrived, it smelling divine, and I made some attempts to begin eating, but it's really hard to do when one arm has an IV, the other an O2 monitor, plus the nc up my nose. As I'm meandering through the meal, one of the nurses comes in, and says I might have a hard time w/ the food I ordered because of upset stomach. Now mind you, this was the same nurse who said I could have anything I wanted. Umm....HELLO!?!? I would have just gotten a salad if that was the case! After being told that, my joy at the fish and chips dwindled at the prospect of possible vomiting which generally involves the use of abdominal muscles, which at that time I was pretty sure would hurt like the devil if I even attempted to engaged them. In the end, my iron stomach held up just fine, but I still only managed about half of the meal, which was surprisingly good for hospital food.
Now to my legwarmers. Two of the main concerns post-op are the development of pneumonia and blood clots. Given the profound lack of mobility from all the monitors, surgery & meds, medical science has devised a device that may or may not violate the geneva conventions on cruel & unusual punishments. It consists of electronically inflating fleece wraps that go around your calves. First one inflates (like a blood pressure cuff), then deflates, followed a minute or so later by the other one. Now, the "theory" is that they keep clots from forming, but really I think it's to overheat patients and generally irritate us. The most wonderful part - unless we're actually walking, the legwarmers stay on. 24-7. I'm secretly convinced that these vile devices are used to motivate patients to get up and walking as quickly as possible. On one of the vitals checks, I told the CNA that I was feeling really hot. She responds with, "Oh, you're having hot flashes." Umm no, heifer, it's not hot flashes, I'm BAKING! So we did some investigating. Not only did I have two thermal blankets, a sheet, and my fleece leg warmers, but the room temp was set to 75. Seriously, I think a hot yoga session is cooler than I was. She chuckled and started removing my eskimo layers and set the room temp down to 65. I still felt hot, but damn it was a hell of a lot betterer!
Coming soon.....the Catheter Tales...
Now to my legwarmers. Two of the main concerns post-op are the development of pneumonia and blood clots. Given the profound lack of mobility from all the monitors, surgery & meds, medical science has devised a device that may or may not violate the geneva conventions on cruel & unusual punishments. It consists of electronically inflating fleece wraps that go around your calves. First one inflates (like a blood pressure cuff), then deflates, followed a minute or so later by the other one. Now, the "theory" is that they keep clots from forming, but really I think it's to overheat patients and generally irritate us. The most wonderful part - unless we're actually walking, the legwarmers stay on. 24-7. I'm secretly convinced that these vile devices are used to motivate patients to get up and walking as quickly as possible. On one of the vitals checks, I told the CNA that I was feeling really hot. She responds with, "Oh, you're having hot flashes." Umm no, heifer, it's not hot flashes, I'm BAKING! So we did some investigating. Not only did I have two thermal blankets, a sheet, and my fleece leg warmers, but the room temp was set to 75. Seriously, I think a hot yoga session is cooler than I was. She chuckled and started removing my eskimo layers and set the room temp down to 65. I still felt hot, but damn it was a hell of a lot betterer!
Coming soon.....the Catheter Tales...
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