When I was in my early twenties the apartment building I was living in caught on fire in the middle of the night. I was able to get out unscathed, but had some scary moments during my escape. Waking up suddenly from a sound sleep only to see flames licking at your windows and thick columns of black smoke coming up thru the heating registers in the floor is a frightening experience, to say the least. I remember that everything seemed to move in slow motion and all the while I kept thinking, “This can’t be happening” – tho clearly it was. Even afterwards as I stood outside in the street and watched the firefighters try to control the 4-alarm blaze I kept having this feeling of reality being suspended; as if what I was witnessing wasn’t real.
Last year after I found the lumps in my breast it took several weeks to get a diagnosis. During most of that time I vacillated between thinking it would be nothing and fearing the worst. But even when I thought the news might be bad there was a significant part of my brain that reacted just like it did watching those flames burn my home…feeling like it couldn’t be real. It just couldn’t be.
But it was.
Now I’m waiting to find out if the pulmonary nodules in my lungs have grown…if the breast cancer has indeed spread. Perhaps as testament to either the power of hope or denial, I swing like a pendulum, back and forth, as to which way the outcome will go. On one level it’s hard to imagine more bad news coming my way…I mean really, enough is enough already, right? And yet on another level it’s hard to ignore the reality. Once your innocence is shattered it’s not as easy to maintain blind faith. I now know all too well that worst-case scenarios do happen. Buildings burn down. People get sick and sometimes cancer wins.
So I’m left wondering, am I merely standing here in a haze of disbelief watching the flames prepare to devour what’s left of my life, or do I get to escape the blaze again and regain some smidgen of a fundamental sense that there is goodness left for me in this world.
Oh, and let us not forget the third option…that while the nodules might not be a fast growing metastasis, they do end up still being there, same as before…their presence meaning I have yet more waiting to do before finally knowing with some degree of certainty if they are malignant or not…sort of like living in my own little corner of Purgatory rather than immediately being thrown into the definitive inferno much further south.
Meanwhile, this is me, still waiting…till next time.
Tuesday, June 29, 2010
Friday, June 25, 2010
Call waiting
(This does have a happy ending)
When I went in for a retest after a bad pap smear my doctor recommended I have a vaginal ultrasound and some blood work since having breast cancer puts me at higher risk for various reproductive cancers. The u/s tech said that unofficially everything looked fine and I was relieved.
I was told to make an appointment to get all the official results from the doctor in person, but if everything was fine I’d get a call before that instead, in which case I was supposed to cancel the unneeded appointment. So I made what I call the “in case of bad news appointment” but promptly put it out of my head. The second pap smear had come back clear and since the tech said the vag u/s looked good (and since I’ve got lung nodules to worry about) the whole thing slipped my mind.
Until yesterday.
Yesterday I got a call to confirm my “in case of bad news appointment”. My stomach dropped and I thought I was going to faint. I asked the woman who phoned if the doctor was there, I needed to speak to him. But he wasn’t in. So I asked for another doctor – any doctor. By this time I was crying. I told her I am a breast cancer patient and I know what needing this appointment really meant, that the news was bad. I begged her to please find me someone to talk to and get the results from by phone. She tried, I could hear the compassion in her voice – but there was no one there that was authorized to give, and I quote, “those kind of results” by phone.
I was supposed to go in today, but I had that CT scan for lung metastasis scheduled. The gynecologist and imaging place are too far from each other to go to both in the same day. Instead I was going to have to receive a call from the gynecologist on my cell, or wait the weekend for Monday. Neither choice was good, but I chose to get a cell phone call. Waiting an entire weekend was NOT an option.
After hanging up I sat in this house alone with my kids for the next ten minutes just weeping uncontrolably. After crying to Michael and freaking him out at work I called my mother, by that time, hysterical. She was outraged at how this was being handled. I felt that way too but was too upset to focus on that part of it. Mom asked me if she could call the doctor's office and try again to get the results. At almost 47 years of age I did the only thing I was capable of doing at that moment – I decided to go ahead and sic my 70-something mother on them. Apparently she raised holy Hell because within minutes the entire situation was resolved.
It was a mistake.
W.T.F?????
My ultrasound was completely normal. Completely. Normal. So was the blood work. It was, in a sense, a scheduling error. I was supposed to receive the “it’s nothing call” but mistakenly didn’t. So they were just calling to confirm the office appointment by default. The office manager phoned me to apologize. While I could have given her a piece of my mind instead I gave her a piece of my heart…I tearfully, VERY tearfully told her what I had just gone thru, that my young children had to see their mother become unglued yet again for nothing, my entire family was to be frightened yet again, for absolutely nothing. I said I don’t ever want this to happen to another woman. She promised me the system would be addressed.
What I went thru was excruciating, but in reality it lasted less than an hour. However in that hour I sure had time enough to consider many of the worst case scenarios...and now that I’ve had breast cancer, trust me, I have a bird’s eye view of what those kind of scenarios really look like, up nice and close.
I said this had a happy ending and it does, truly, for the most part. While at the moment I'm still reeling I am also hugely grateful beyond measure that this turned out to be a big fat nothing. The word relief doesn't begin to cover it. But sadly, happy endings aren’t quite what they used to be either. I'm still waiting for results next week about my lung scan. It seems forever more my happy endings will be diminished by the reality of just how temporary happiness can be, how easily it can disappear. All it takes sometime is a phone call.
When I went in for a retest after a bad pap smear my doctor recommended I have a vaginal ultrasound and some blood work since having breast cancer puts me at higher risk for various reproductive cancers. The u/s tech said that unofficially everything looked fine and I was relieved.
I was told to make an appointment to get all the official results from the doctor in person, but if everything was fine I’d get a call before that instead, in which case I was supposed to cancel the unneeded appointment. So I made what I call the “in case of bad news appointment” but promptly put it out of my head. The second pap smear had come back clear and since the tech said the vag u/s looked good (and since I’ve got lung nodules to worry about) the whole thing slipped my mind.
Until yesterday.
Yesterday I got a call to confirm my “in case of bad news appointment”. My stomach dropped and I thought I was going to faint. I asked the woman who phoned if the doctor was there, I needed to speak to him. But he wasn’t in. So I asked for another doctor – any doctor. By this time I was crying. I told her I am a breast cancer patient and I know what needing this appointment really meant, that the news was bad. I begged her to please find me someone to talk to and get the results from by phone. She tried, I could hear the compassion in her voice – but there was no one there that was authorized to give, and I quote, “those kind of results” by phone.
I was supposed to go in today, but I had that CT scan for lung metastasis scheduled. The gynecologist and imaging place are too far from each other to go to both in the same day. Instead I was going to have to receive a call from the gynecologist on my cell, or wait the weekend for Monday. Neither choice was good, but I chose to get a cell phone call. Waiting an entire weekend was NOT an option.
After hanging up I sat in this house alone with my kids for the next ten minutes just weeping uncontrolably. After crying to Michael and freaking him out at work I called my mother, by that time, hysterical. She was outraged at how this was being handled. I felt that way too but was too upset to focus on that part of it. Mom asked me if she could call the doctor's office and try again to get the results. At almost 47 years of age I did the only thing I was capable of doing at that moment – I decided to go ahead and sic my 70-something mother on them. Apparently she raised holy Hell because within minutes the entire situation was resolved.
It was a mistake.
W.T.F?????
My ultrasound was completely normal. Completely. Normal. So was the blood work. It was, in a sense, a scheduling error. I was supposed to receive the “it’s nothing call” but mistakenly didn’t. So they were just calling to confirm the office appointment by default. The office manager phoned me to apologize. While I could have given her a piece of my mind instead I gave her a piece of my heart…I tearfully, VERY tearfully told her what I had just gone thru, that my young children had to see their mother become unglued yet again for nothing, my entire family was to be frightened yet again, for absolutely nothing. I said I don’t ever want this to happen to another woman. She promised me the system would be addressed.
What I went thru was excruciating, but in reality it lasted less than an hour. However in that hour I sure had time enough to consider many of the worst case scenarios...and now that I’ve had breast cancer, trust me, I have a bird’s eye view of what those kind of scenarios really look like, up nice and close.
I said this had a happy ending and it does, truly, for the most part. While at the moment I'm still reeling I am also hugely grateful beyond measure that this turned out to be a big fat nothing. The word relief doesn't begin to cover it. But sadly, happy endings aren’t quite what they used to be either. I'm still waiting for results next week about my lung scan. It seems forever more my happy endings will be diminished by the reality of just how temporary happiness can be, how easily it can disappear. All it takes sometime is a phone call.
Saturday, June 19, 2010
What's new
Lung nodules -- back to square one…
We got a second opinion from another pulmonologist and he says something different than the first doctor – but of course. I need another CT scan to rule out a fast growing metastasis…which he thinks it will do, but still, I’m back to waiting and worrying again. Not that I wasn’t already doing that since I was in a holding pattern till September’s CT to see if the nodules grew anyway. But now I will have a scan sooner and hold my breath to see if they grew fast – which would be really, really bad. On the other hand, they could also have disappeared (she said w/fingers crossed) – which would be really, really good. Hopefully I can get the CT & answer next week. This second pulmonary guy is a cancer survivor himself so he won’t keep me waiting for results, at least on his part.
More medical stuff…
I’ve been having trouble with my eye…something called recurrent erosion. I had a corneal laceration about a dozen years ago that acts up sometimes – and it chose now to do so. My body has really bad timing lately. Understatement.
About that house we were buying…
It all fell thru, and truth be told we’re kinda relieved right now. It’s a long story (um, what isn’t in my life) and it came right down to the wire in a nail biting finale. But the bottom line is we’re way better off. For now we stay put.
However someone is moving…
My mother sold her house and is moving in a week! She’s renting an apartment until she finds the right condo. This has added some chaos as you can imagine. I am glad tho, as even her little house with it’s little yard was beginning to be a bit much for her to care for. Also, she’s going to try and find a place closer to us…it’s about a 40min drive to her town now.
Thus ends the updating…
Beyond that there’s not much to tell. Okay, that’s not really true…there’s always more to tell and I’m usually up for the job of telling it and then some. Lately tho I just feel sort of on hold and more than a little preoccupied. But I wanted to put up an entry since it's been a while and so I’ve filled it with all the newsy bits and probably little substance. It will have to do for now, better than nothing.
So, till next time, this is me hanging in there…waiting….
We got a second opinion from another pulmonologist and he says something different than the first doctor – but of course. I need another CT scan to rule out a fast growing metastasis…which he thinks it will do, but still, I’m back to waiting and worrying again. Not that I wasn’t already doing that since I was in a holding pattern till September’s CT to see if the nodules grew anyway. But now I will have a scan sooner and hold my breath to see if they grew fast – which would be really, really bad. On the other hand, they could also have disappeared (she said w/fingers crossed) – which would be really, really good. Hopefully I can get the CT & answer next week. This second pulmonary guy is a cancer survivor himself so he won’t keep me waiting for results, at least on his part.
More medical stuff…
I’ve been having trouble with my eye…something called recurrent erosion. I had a corneal laceration about a dozen years ago that acts up sometimes – and it chose now to do so. My body has really bad timing lately. Understatement.
About that house we were buying…
It all fell thru, and truth be told we’re kinda relieved right now. It’s a long story (um, what isn’t in my life) and it came right down to the wire in a nail biting finale. But the bottom line is we’re way better off. For now we stay put.
However someone is moving…
My mother sold her house and is moving in a week! She’s renting an apartment until she finds the right condo. This has added some chaos as you can imagine. I am glad tho, as even her little house with it’s little yard was beginning to be a bit much for her to care for. Also, she’s going to try and find a place closer to us…it’s about a 40min drive to her town now.
Thus ends the updating…
Beyond that there’s not much to tell. Okay, that’s not really true…there’s always more to tell and I’m usually up for the job of telling it and then some. Lately tho I just feel sort of on hold and more than a little preoccupied. But I wanted to put up an entry since it's been a while and so I’ve filled it with all the newsy bits and probably little substance. It will have to do for now, better than nothing.
So, till next time, this is me hanging in there…waiting….
Tuesday, June 1, 2010
It's not bad news...
Just got back from seeing the pulmonary doctor, and while it's not perfectly wonderful news, it is totally not bad news either.
Definitely NOT bad.
According to him based on the CT scan there is nothing about my pulmonary nodules at the moment that appear specifically cancerous. The plan is to wait and watch them. Sometimes pulmonary nodules are immediately suspicious and have clear cancerous characteristics such as irregular edges. In those instances they require biopsy or surgery for confirmation right away. But some nodules, like mine, don’t possess any obvious criteria that indicates cancer. Plus mine are small enough that doing a needle biopsy is challenging and no one wants to start slicing into my lungs if the little buggers are a big fat nothing. So instead they monitor them to see if they change, if they grow. These nodules could be completely benign, could have been there for years without me knowing it. But unfortunately a pulmonary nodule that doesn’t start off looking suspicious can also still end up being cancerous eventually.
So if these nodules stay the same size they are considered stable and not likely to be any kind of threat. If they grow…well, that would be bad. I will have a CT scan in 4 months. Assuming they haven’t grown then my understanding is the CT scans continue every 3 or 4 months for two years. After that if there is still no change they cut back the scans to once or twice a year. For how long I don’t know. Oh, and the doctor said if it weren’t for my breast cancer history we’d only do the scans every year right from the start – even tho I am a former smoker. So they are watching me more carefully which somehow makes me feel both better and worse, you know? Like I’m comforted to know they are on top of this but nervous they think that’s necessary.
Over all the doctor was very positive…said he really doesn’t think this will turn out to be cancer. However, when asked, he said he can’t say for sure it isn’t. But he did repeatedly stress that in his opinion it won’t go that way. I want to hear that from another doctor so I will be getting a second opinion, just to be thorough and to ease my mind a bit further.
Like I said – it’s totally not bad news. It’s almost good news. Short of finding out the little buggers had disappeared, it’s probably the best news I could hope for. I guess I should be happy, but I think I’m still sort of processing this…it hasn’t sunk in yet. I’ve been so upset, so terrified that I think my body hasn’t fully come down from high alert, if that makes sense. And despite the positive outlook of the doctor it's hard not to see this as one more thing hanging over my head.
I need a vacation.
Last but by far not least -- I’m going to post personally on the comments thread from my previous blog entry but wanted to say a big gigantic thank you here till I get a chance to do that. People talk about how strong I am – and if there’s any truth to that I can honestly say a huge source of that strength has been this blog and the astonishing people who come here and lend me their compassion, support and love. It’s hard to describe how a disparate group of essentially strangers can make such an amazing impact on one life…but you each have, you’ll never know how much. Everyone who has ever offered me their kindness has made a difference, has touched my heart when I needed it most. You are all important to me and have carried me along when I thought I couldn’t go on. Thank you…thank you…thank you.
Definitely NOT bad.
According to him based on the CT scan there is nothing about my pulmonary nodules at the moment that appear specifically cancerous. The plan is to wait and watch them. Sometimes pulmonary nodules are immediately suspicious and have clear cancerous characteristics such as irregular edges. In those instances they require biopsy or surgery for confirmation right away. But some nodules, like mine, don’t possess any obvious criteria that indicates cancer. Plus mine are small enough that doing a needle biopsy is challenging and no one wants to start slicing into my lungs if the little buggers are a big fat nothing. So instead they monitor them to see if they change, if they grow. These nodules could be completely benign, could have been there for years without me knowing it. But unfortunately a pulmonary nodule that doesn’t start off looking suspicious can also still end up being cancerous eventually.
So if these nodules stay the same size they are considered stable and not likely to be any kind of threat. If they grow…well, that would be bad. I will have a CT scan in 4 months. Assuming they haven’t grown then my understanding is the CT scans continue every 3 or 4 months for two years. After that if there is still no change they cut back the scans to once or twice a year. For how long I don’t know. Oh, and the doctor said if it weren’t for my breast cancer history we’d only do the scans every year right from the start – even tho I am a former smoker. So they are watching me more carefully which somehow makes me feel both better and worse, you know? Like I’m comforted to know they are on top of this but nervous they think that’s necessary.
Over all the doctor was very positive…said he really doesn’t think this will turn out to be cancer. However, when asked, he said he can’t say for sure it isn’t. But he did repeatedly stress that in his opinion it won’t go that way. I want to hear that from another doctor so I will be getting a second opinion, just to be thorough and to ease my mind a bit further.
Like I said – it’s totally not bad news. It’s almost good news. Short of finding out the little buggers had disappeared, it’s probably the best news I could hope for. I guess I should be happy, but I think I’m still sort of processing this…it hasn’t sunk in yet. I’ve been so upset, so terrified that I think my body hasn’t fully come down from high alert, if that makes sense. And despite the positive outlook of the doctor it's hard not to see this as one more thing hanging over my head.
I need a vacation.
Last but by far not least -- I’m going to post personally on the comments thread from my previous blog entry but wanted to say a big gigantic thank you here till I get a chance to do that. People talk about how strong I am – and if there’s any truth to that I can honestly say a huge source of that strength has been this blog and the astonishing people who come here and lend me their compassion, support and love. It’s hard to describe how a disparate group of essentially strangers can make such an amazing impact on one life…but you each have, you’ll never know how much. Everyone who has ever offered me their kindness has made a difference, has touched my heart when I needed it most. You are all important to me and have carried me along when I thought I couldn’t go on. Thank you…thank you…thank you.
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