My mother-in-law is visiting. She showed up with some difficult news: her primary peritoneal carcinoma has returned, four months after her last round of chemo, which we knew-- but her blood work showed marker numbers not at 176, as she had previously told us, but 996. PPC carries a survival rate akin to that of ovarian cancer--36% at 5 years with rigorous, aggressive treatment and surgery, less without. So Ma has decided that at the beginning of October, almost a year to the day of her first chemo treatment, 8 months after chemo and surgery had removed all traces of the previous tumors in her belly, she will start a different kind of chemo, this one designed not to eradicate tumors but to reduce and control them so she may lengthen what little time she has left. She told us this after we had finished eating, sons and wives and grandchildren perched on stools and chairs and the couch, sprawling on the floor. Except for some reason, while she was telling us about her odds (not very good at all) and her plans (nothing on her bucket list except a jet boat down the Rogue River and to visit with friends and family), and who is getting what money and who has power of attorney and how she wants to be buried, she stared right at me. And it damn near broke my heart when I realized that the reason she was staring at me was because if she looked any of her boys or grandkids in the eye, she wouldn't be able to finish. Her pride in each of them and her eldest's wife is palpable, and rightfully so. Every single one of them is a person I am honored to know, in no small part because of her.
It is disconcerting, listening to her speak. She's always nattered on about this and that, and I've heard many of her stories more than once, but it seems that her focus now is getting as many of these stories out of her heart into the hearts of those she loves and those who love the ones she loves. We have shared stories of our ex-husbands' infidelities, and to hear her tell them makes my heart ache for the woman she was and the little boys my mister and his brothers were. She told me the only time she ever asked for money was the first time she found out the boys' dad was cheating on her--she figured she better do something since she had kind of let herself go after three babies and a full time evening shift job, so she asked her grandma for some money and she got her hair done up pretty.
It didn't work, of course. The way she tells the story, however, her desperate trip to the hairdresser reminds me of her cheerful but desperate chemo treatments--it won't work, but she's willing to try, by gum, and if she can suspend disbelief for just long enough, maybe a new hairdo and going without glasses will keep her children's daddy around, and maybe the chemo will work and she'll make it three more years.
It took him five more years to leave for good, but even before the day Ma got her hair done, he was already gone. And frankly, with as fast as her tumors are growing now, she might as well already be dead. I cringe to hear her talk about the garden she is going to plant next spring five minutes after telling me that she can't sleep on her stomach because one of the tumors has gotten so big that it presses painfully against her bladder.
We have been planning this visit for a couple of months, now, right after Ma got the original news. I've had a menu well-thought out and shopped for, heavy on the veggies, smoothies, raw, whole foods with no meat, dairy, or sugar. We will stick with that, of course, but when you've been given six months to live, I think it's okay to eat outside the lines. Diet isn't going to change anything now, and in a couple of months when all she can have is liquid because the tumors are choking her bowels, I don't want her to regret that she didn't get to eat food she likes.
I don't know what to think of this woman. I find her cheerfulness and belief in miracles to be naive, but I know that they bring her comfort, and for a long time they are all she had. I can't begin to understand how it must feel to know so acutely that the body you live in is actively dying. Ma and the mister and the daughter and I all played Sorry! the other day, and the banality of it almost killed me until I realized that really, this is all she wants--to be with her people in the day to day of it, to find joy in the mundane. When we came home from the gym and I saw her sitting in the sun on the back porch, eyes closed, head back, face tilted to catch the warmth and brightness, I had to bite my fingers to quell the grief suddenly welling up inside me. I have spent six years rolling my eyes at her, six years sighing, six years holding my tongue, six years wasting time. I wish I had taken a picture of her, out there on the porch. I wish we had all eaten cake for breakfast.
September 20, 2013
September 07, 2013
living the life of the uninsured
Lown-Ganong-Levine. Those are the last names of the three physicians who "discovered" the diagnosis I was given two years ago (after performing an EKG on myself at work when I felt my heart try to run a marathon while I was sitting at the computer, charting), a re-entry tachycardia characterized by a short PR interval, no delta wave, and the tendency of the heart to jump into paroxysmal tachycardia at the slightest hint of aerobic exercise, not to mention frequent premature ventricular contractions and occasional runs of paroxysmal tachycardia for no reason at all. Lown, Ganong, and Levine apparently decided that they wouldn't be outdone by Wolff-Parkinson-White, the trio who discovered another self-named re-entry tachycardia also characterized by a shortened PR interval, but differentiating itself by having a delta wave.
I knew what WPW was, as well as all that other mumbo jumbo, being a paramedic, but I had never heard of LGL. In fact, when I Googled it, what I found was that LGL is considered an outdated diagnosis, and it falls under the umbrella diagnosis of PSVT, and nobody really knows what causes it or how to cure it, but it can be controlled by medications that lower the heart rate and prevent it from increasing. Medications I am unable to take because my resting heart rate lives in the 50-60 beats per minute zone, and if I were to take a medication to control my heart rate, I would most likely pass out any time I tried to stand up.
That is not at all helpful.
I should mention, at this point, that this "diagnosis" came on the fly from a couple of different sources, none of whom were really within their scope of practice to diagnose in the first place. However, the insurance that came with my horribly underpaid job at the urgent care had a $5000 deductible and a $70 specialist co-pay, which meant that I wouldn't be seeing a cardiologist anytime soon. Some of my cohorts and I performed a ghetto-style stress test during a slow stretch at work, putting me on a treadmill and hooking me up to the EKG machine just to make sure that when my heart rate shot up to 190 that at least it stayed regular, with no underlying dysrhythmias. That was quite fun for everyone but me. I found some relief with acupuncture at a community clinic-- twice weekly treatments prevented my heart from going above 165 during aerobic exercise, but even at $20 per treatment, that added up quickly.
The physicians I worked for hemmed and hawed and told me I really should go see a specialist, but they understood my financial predicament and were willing to care for and monitor my condition, so over the last two years I've felt fairly safe knowing that if anything did happen, my heart would be in good hands--theirs.
And then we moved.
Now, I find myself with no health insurance at all (not even catastrophic, with its $5000 deductible), and a potentially fatal cardiac condition. Life has suddenly become terrifying. For the first few weeks after we moved, I lived in fear that I would twist an ankle, fall on a wrist, cut myself badly enough that I would require sutures. Then I started worrying that I would contract pneumonia again, or get a UTI. I know what a self-pay urgent care visit costs for lab tests, x-rays, point of care testing, and medication. It is not cheap. Specialists cost even more. And in the high desert, acupuncture isn't cheap, either-- at the community clinic here, one treatment costs $45, and that's at the bottom of their sliding scale.
I have, at times, in the last few months, gotten incredibly depressed at what this means for me. If I were to be hit by a car, found unconscious, fall down a mountain (snowboarding or hiking), break a bone. . .if my heart goes into PSVT and doesn't paroxysmally go out of it, I will need to go to a hospital, and the bills will bankrupt me. End of story.
I saw first hand in my work on an ambulance, in the ER, and at an urgent care how desperate the need for a single payer health care system is, and if you don't think it has anything to do with you because you happen to have fantastic health insurance, you are very, very wrong. There are people presenting to ERs day in and day out with primary care issues, people who go to the ER because they have no money for primary care. The ER must evaluate them regardless of ability to pay due to EMTALA laws. These patients have no preventative care, no education regarding wellness, no resources except the beleaguered health care providers in the ER who don't have the time or the inclination to discuss well-being and general health, which means that those patients are going to be right back to the ER with their next headache, abdominal pain, etc. Every uninsured patient that walks in to an ER becomes the burden of the insured. Follow the loop, here: uninsured patient = probable unpayment of bill = hospital write off = increased hospital billing rates to insurance companies = increased insurance costs for the insured. Here's the icing on the health care cake-- the higher the rates the hospital bills out at, the less likely the uninsured or underinsured are going to be able to pay the cost. This is the very definition of a vicious cycle. And I may find myself in the middle of it very soon.
I knew what WPW was, as well as all that other mumbo jumbo, being a paramedic, but I had never heard of LGL. In fact, when I Googled it, what I found was that LGL is considered an outdated diagnosis, and it falls under the umbrella diagnosis of PSVT, and nobody really knows what causes it or how to cure it, but it can be controlled by medications that lower the heart rate and prevent it from increasing. Medications I am unable to take because my resting heart rate lives in the 50-60 beats per minute zone, and if I were to take a medication to control my heart rate, I would most likely pass out any time I tried to stand up.
That is not at all helpful.
I should mention, at this point, that this "diagnosis" came on the fly from a couple of different sources, none of whom were really within their scope of practice to diagnose in the first place. However, the insurance that came with my horribly underpaid job at the urgent care had a $5000 deductible and a $70 specialist co-pay, which meant that I wouldn't be seeing a cardiologist anytime soon. Some of my cohorts and I performed a ghetto-style stress test during a slow stretch at work, putting me on a treadmill and hooking me up to the EKG machine just to make sure that when my heart rate shot up to 190 that at least it stayed regular, with no underlying dysrhythmias. That was quite fun for everyone but me. I found some relief with acupuncture at a community clinic-- twice weekly treatments prevented my heart from going above 165 during aerobic exercise, but even at $20 per treatment, that added up quickly.
The physicians I worked for hemmed and hawed and told me I really should go see a specialist, but they understood my financial predicament and were willing to care for and monitor my condition, so over the last two years I've felt fairly safe knowing that if anything did happen, my heart would be in good hands--theirs.
And then we moved.
Now, I find myself with no health insurance at all (not even catastrophic, with its $5000 deductible), and a potentially fatal cardiac condition. Life has suddenly become terrifying. For the first few weeks after we moved, I lived in fear that I would twist an ankle, fall on a wrist, cut myself badly enough that I would require sutures. Then I started worrying that I would contract pneumonia again, or get a UTI. I know what a self-pay urgent care visit costs for lab tests, x-rays, point of care testing, and medication. It is not cheap. Specialists cost even more. And in the high desert, acupuncture isn't cheap, either-- at the community clinic here, one treatment costs $45, and that's at the bottom of their sliding scale.
I have, at times, in the last few months, gotten incredibly depressed at what this means for me. If I were to be hit by a car, found unconscious, fall down a mountain (snowboarding or hiking), break a bone. . .if my heart goes into PSVT and doesn't paroxysmally go out of it, I will need to go to a hospital, and the bills will bankrupt me. End of story.
I saw first hand in my work on an ambulance, in the ER, and at an urgent care how desperate the need for a single payer health care system is, and if you don't think it has anything to do with you because you happen to have fantastic health insurance, you are very, very wrong. There are people presenting to ERs day in and day out with primary care issues, people who go to the ER because they have no money for primary care. The ER must evaluate them regardless of ability to pay due to EMTALA laws. These patients have no preventative care, no education regarding wellness, no resources except the beleaguered health care providers in the ER who don't have the time or the inclination to discuss well-being and general health, which means that those patients are going to be right back to the ER with their next headache, abdominal pain, etc. Every uninsured patient that walks in to an ER becomes the burden of the insured. Follow the loop, here: uninsured patient = probable unpayment of bill = hospital write off = increased hospital billing rates to insurance companies = increased insurance costs for the insured. Here's the icing on the health care cake-- the higher the rates the hospital bills out at, the less likely the uninsured or underinsured are going to be able to pay the cost. This is the very definition of a vicious cycle. And I may find myself in the middle of it very soon.
I love that I can see mountains out of my bedroom window. Rock Star mentioned when we first moved in that we will be able to see if the summit chair on Mt. Bachelor is running before we even get out of our pajamas, and if it is not, we can stay in our pjs and drink coffee all day instead of driving to the hill.
There are times, still, where this feels so surreal. Even now, three months after moving, the birds sound wrong, although I love their songs. I wake up to doves and a rooster down the street; sparrows that sound exactly like the text tone on my phone. How odd. I look around this beautiful house and wonder when the owner will be home, because I've certainly never owned anything this nice in my life. I've spent the better part of my adulthood decorating in Early Single Mother, and Rock Star has always been more concerned with spending money on the things he wants to do instead of the place that he lives. That is changing, though. Whenever he is home, we are working in the yard, trying to get it ready for winter. He built out the existing garden so it is twice the size, we've taken out half the lawn and most of the junipers, I put in new perennial plants, and just spent way more money than we should have on bulbs from Brecks.
Last week, after some of this hard work, I looked out the sliding glass door on to the porch and got a flash of belonging. Just a flash, though. I don't know what it will take to make this feel like home. Maybe less brown.
There are times, still, where this feels so surreal. Even now, three months after moving, the birds sound wrong, although I love their songs. I wake up to doves and a rooster down the street; sparrows that sound exactly like the text tone on my phone. How odd. I look around this beautiful house and wonder when the owner will be home, because I've certainly never owned anything this nice in my life. I've spent the better part of my adulthood decorating in Early Single Mother, and Rock Star has always been more concerned with spending money on the things he wants to do instead of the place that he lives. That is changing, though. Whenever he is home, we are working in the yard, trying to get it ready for winter. He built out the existing garden so it is twice the size, we've taken out half the lawn and most of the junipers, I put in new perennial plants, and just spent way more money than we should have on bulbs from Brecks.
Last week, after some of this hard work, I looked out the sliding glass door on to the porch and got a flash of belonging. Just a flash, though. I don't know what it will take to make this feel like home. Maybe less brown.
Subscribe to:
Posts (Atom)