So, after flying from WA to Michigan to undergo an ovarian transposition, I returned home for a month of radiation. Sometime during chemo I had begun moving through patches of hot flashes and hormonal menopausal road rage, as my ovaries shut down from the influx of chemicals. We went to Pacific NW Fertility clinic in downtown Seattle, next door to Swedish, for an evaluation of our chances at conceiving another child. The specialist there did an ultrasound on my connected ovary (hilariously, she could not locate the other one despite half an hour of trying). Apparently, yet another thing that oncologists don't often think to mention to their patients is that chemotherapy causes ovaries to "hemorrhage" eggs, and I had very, very few eggs left. We were told that the few remaining eggs were too fragile to survive an in-vitro attempt, and that embro adoption was a good option for us, as my uterus was in pretty good shae and I could still carry a baby. I could expect to enter a permanent menopause shortly, and our chances of conceiving even with fertility drugs were considered almost nil.
My husband wasn't worried. With his constant, annoying optimism, he told me, "I'm not worried.. I just think we're going to have more kids." I tried to beat it into his head - "Honey! You just don't get it! We're done!" A few months later, I experienced massively fertile signs (learned from Natural Family Planning) and didn't think much of it. But my body knew what it was doing! I imagine my body knew it had come up with a perfectly preserved, ripened egg and it damn sure wasn't going to waste that egg! So my hardworking, faithful old body put all of its energy into manufacturing cervical fluid and making everything just perfect for conception. A few weeks later when I hadn't had my period, I still wasn't getting excited - it was at that time a faithless companion, coming and going at will. But when I began feeling nauseous, I pulled out an old test just to set my mind at rest. The line appeared. I stared in disbelief and went back and read the instructions on the pamphlet again. No mistake!
Even then, it took a few months for me to realize that the pregnacy was real and probably going to stick! I kept expecting a miscarriage, a tragic disappointment, and so I reined myself in and disallowed any enthusiasm for this little one until the second trimester was in full swing. "Hm," I thought, "maybe the little guy is going to stick around after all!"
Bryan and I both had a gut feeling that our baby was a boy this time, well ahead of any chance at a gender check. I started picking up baby boy clothes and collecting a list of boy names, despite my own protests at my "ridiculous" behavior. I half-heartedly picked through girl clothes, girl names as a gesture, but inwardly something told me, "You won't need those."
Sure enough, the ultrasound revealed a boy!
This baby never would have been if I had listened to the first gynecologic surgeon without seeking a second opinion. This surgeon had come highly recommended by my oncologist, whom I greatly respected. .
I learned a HUGE lesson: ALWAYS question everything during cancer/medical treatment. If you don't like it, ask again. Ask someone else. Ask again. Is there another way we can do this? Really, it is YOUR life; this matters the most to you. The medical staff can handle your polite assertiveness! Time and time again I have discovered that actually, there is usually another way of doing things that is less painful, less embarrassing, less damaging, and YOU will be the only one to care enough to press the medical professionals into remembering the other options. Don't be afraid! It is their job to take care of you and you need to help them learn how best to do that.
1. When I was at Island Hospital, recovering from my C-section with Elijah, I was dismayed to learn that there were only three milkshake options on the menu: chocolate, strawberry, and vanilla. I was madly craving a chocolate peanut butter millkshake. Using my newfound theory on medicine, I wrote a nice note on my order form, begging for a PEANUT BUTTER chocolate milkshake. Guess what? The people filling my order were compassionate human beings, and I got my milkshake.
2. I never imagined that the technicians would be routinely using larger needles than necessary to do my blood draws, but they were. After much caterwauling, a kind-hearted nurse offered me a butterfly needle, useable for most blood tests. Much smaller and usually used on children. But since I was bursting into tears with every draw, I sweetly demanded a butterfly needle for every test after that.
3. I spent my first two scans, MRI and PET/CT, in incredible pain because of the positioning. During the MRI there was nothing to be done, but after mutely enduring the PET/CT, shaking and moaning with tears running down my face because of the overwhelming pain, I was told that actually, it is possible to move between segments of the scan. A great technician worked with me after that, allowing me as much movement as possible, and the pain went down to almost zero. If only I had hollered out immediately, I would have been saved that first traumatic, helpless experience! If it hurts, ALWAYS, ALWAYS say something.
And for sure, there is much, much more.
Sunday, June 07, 2009
Saturday, June 06, 2009
A Miracle Baby
Today Elijah Luke is 10 weeks old. He is the baby we never thought we'd have.
Because I had a large tumor growing through my pelvic bone, Dr. Milder at Swedish Cancer Institute recommended radiation following chemotherapy, "just to make sure" the tumor didn't decide to grow back there. PET/CT scans as well as blood tests for tumor growth factor had shown no trace of cancer, but apparently there still could be microscopic particles too small for detection.
I made an appointment to see a gynecologic surgeon, because my ovaries were in the radiation field and would likely be torched by the radiation process, failing and sending me into premature menopause. This would put me at risk for early heart disease and osteoporosis. I was completely stunned to learn that what Dr. Milder had casually referred to as "moving your ovaries" in fact involved surgically severing both my fallopian tubes, akin to a tubal ligation or "getting your tubes tied". We had always wanted more children, and when I began chemo both our oncologist and his nurse had assured us that other patients had gone on to have children post chemo.
When I asked Dr. Drescher and his nurse if the procedure could be performed without severing my fallopian tubes and rendering my infertile, the nurse actually laughed at me, and Dr. Drescher looked at me with pity. He said he could leave one ovary in place, but that would place me at higher risk for ovarian failure, which would jeopardize my overall health.
I went home in tears, having scheduled the procedure, feeling hopeless and out of options. We dearly wanted more children, but not at the possible cost of my life.
Thankfully, my mom jokingly refers to herself as "Dr. Google". She immediately went online and soon discovered a wonderful guy named Dr. Arnold Advincula, a talented surgeon at the University of Michigan. Dr. Advincula does robotic laparascopy using the Da Vinci system. He operates the controls like a video game, sitting across the room and controlling stainless steel, robotic arms inside the patient's body with precise hand movements. He had recently done an ovarian transposition, stretching out the fallopian tubes without severing them, on a woman who later became pregnant and gave birth to a healthy baby.
I shot off a desperate email plea to Dr. Advincula. His office staff would not allow me to speak with him because I was not a patient, and I had little hope of getting his attention. Incredibly, he wrote back, and soon followed up with a phone call. He asked to review my medical records, and quickly decided that I was a candidate for the procedure. He agreed to move my ovaries out of the radiation field, keeping one ovary connected but severing the other and hiking it up near my hip.
Thanks to our church and community, we had the $1,000 we needed to purchase two plane tickets to Michigan, one for me and one for a dear, faithful friend who agreed to chaperone and drive me around.
Because I had a large tumor growing through my pelvic bone, Dr. Milder at Swedish Cancer Institute recommended radiation following chemotherapy, "just to make sure" the tumor didn't decide to grow back there. PET/CT scans as well as blood tests for tumor growth factor had shown no trace of cancer, but apparently there still could be microscopic particles too small for detection.
I made an appointment to see a gynecologic surgeon, because my ovaries were in the radiation field and would likely be torched by the radiation process, failing and sending me into premature menopause. This would put me at risk for early heart disease and osteoporosis. I was completely stunned to learn that what Dr. Milder had casually referred to as "moving your ovaries" in fact involved surgically severing both my fallopian tubes, akin to a tubal ligation or "getting your tubes tied". We had always wanted more children, and when I began chemo both our oncologist and his nurse had assured us that other patients had gone on to have children post chemo.
When I asked Dr. Drescher and his nurse if the procedure could be performed without severing my fallopian tubes and rendering my infertile, the nurse actually laughed at me, and Dr. Drescher looked at me with pity. He said he could leave one ovary in place, but that would place me at higher risk for ovarian failure, which would jeopardize my overall health.
I went home in tears, having scheduled the procedure, feeling hopeless and out of options. We dearly wanted more children, but not at the possible cost of my life.
Thankfully, my mom jokingly refers to herself as "Dr. Google". She immediately went online and soon discovered a wonderful guy named Dr. Arnold Advincula, a talented surgeon at the University of Michigan. Dr. Advincula does robotic laparascopy using the Da Vinci system. He operates the controls like a video game, sitting across the room and controlling stainless steel, robotic arms inside the patient's body with precise hand movements. He had recently done an ovarian transposition, stretching out the fallopian tubes without severing them, on a woman who later became pregnant and gave birth to a healthy baby.
I shot off a desperate email plea to Dr. Advincula. His office staff would not allow me to speak with him because I was not a patient, and I had little hope of getting his attention. Incredibly, he wrote back, and soon followed up with a phone call. He asked to review my medical records, and quickly decided that I was a candidate for the procedure. He agreed to move my ovaries out of the radiation field, keeping one ovary connected but severing the other and hiking it up near my hip.
Thanks to our church and community, we had the $1,000 we needed to purchase two plane tickets to Michigan, one for me and one for a dear, faithful friend who agreed to chaperone and drive me around.
Body Image
What to say? My body has been ravaged by lymphoma, and I am one of those who got off easy. I am cancer free and missing no limbs or visible body parts, unlike other friends I know.
But when I look in the mirror, there is a thick, raised purple scar above my right breast from where a port was placed and then removed. My skin is striated, laced with grey stretch marks around my abdomen from steroid-induced weight gain, the hateful tire I wore around my middle until a year of dedicated weight training and no desserts slimmed it away. My legs and ankles have sprouted new crops of varicose and spider veins through weight gain and two pregnancies.
My abdomen has five scars across it, fading pink, from the ovarian transposition I had in order to move my ovaries out of the radiation field in my pelvis. And two months ago, the birth of my son turned into a frightening, invasive procedure as we were rushed into the OR for an emergency C-section. I now sport a dark purple slash across my belly that burns and tingles numbly.
I miss my old body that was 130 lbs. of lean muscle, a hiking and biking and swimming body. I miss my abs, the hint of a six-pack, and having flawless skin on my chest.
When I try to weed or do house cleaning, my hands complain by going on strike the next day, aching, swollen, fumbly and clumsy. I don't know if this is a lingering effect of the vincristine, which causes peripheral neuropathy (tingling and numbness in the extremities), or from pregnancy Carpal-tunnel syndrome.
I find it difficult to discern which of my ailments are from chemo, and which simply a result of aging. I feel prematurely old, like an old, old woman sometimes. I will be 30 yrs. old this January. I have a permanently gimpy leg, it seems, from where the 6" long tumor was dissolved from my pelvic bone. I can't sleep on anything but a very soft mattress, because my bones will ache (no camping pads!). If if forget myself and sit on a hard surface, like a step or the floor, when I try to get up I am quickly reminded by a shooting pain that courses down my leg and buckles my foot from under me.
But with all of this kvetching aside, I am ALIVE. Alive!! I am here to flop around the kitchen with my daughter riding on one foot, a living "size 34" sneaker. I am here to nurse my little baby boy, watching him transform day by day into the young man he will be. I am here to go swimming in the lake with my husband, to watch the mighty red sun rise out of the sea at 5am in the summertimes, to be among dear beloveds. Sometimes I pause for this battered, scarred body that has suffered through so much and carried me through so many procedures and so much pain, and I say, "Thank you, old body. Thank you for keeping on and not ever giving up." Because I feel toward my body like one does toward a faithful old plow horse, not as swift or strong or lovely as she once was, sagging a bit around the edges but still dear and affectionate, a steady friend with whom one can comfortably grow old.
But when I look in the mirror, there is a thick, raised purple scar above my right breast from where a port was placed and then removed. My skin is striated, laced with grey stretch marks around my abdomen from steroid-induced weight gain, the hateful tire I wore around my middle until a year of dedicated weight training and no desserts slimmed it away. My legs and ankles have sprouted new crops of varicose and spider veins through weight gain and two pregnancies.
My abdomen has five scars across it, fading pink, from the ovarian transposition I had in order to move my ovaries out of the radiation field in my pelvis. And two months ago, the birth of my son turned into a frightening, invasive procedure as we were rushed into the OR for an emergency C-section. I now sport a dark purple slash across my belly that burns and tingles numbly.
I miss my old body that was 130 lbs. of lean muscle, a hiking and biking and swimming body. I miss my abs, the hint of a six-pack, and having flawless skin on my chest.
When I try to weed or do house cleaning, my hands complain by going on strike the next day, aching, swollen, fumbly and clumsy. I don't know if this is a lingering effect of the vincristine, which causes peripheral neuropathy (tingling and numbness in the extremities), or from pregnancy Carpal-tunnel syndrome.
I find it difficult to discern which of my ailments are from chemo, and which simply a result of aging. I feel prematurely old, like an old, old woman sometimes. I will be 30 yrs. old this January. I have a permanently gimpy leg, it seems, from where the 6" long tumor was dissolved from my pelvic bone. I can't sleep on anything but a very soft mattress, because my bones will ache (no camping pads!). If if forget myself and sit on a hard surface, like a step or the floor, when I try to get up I am quickly reminded by a shooting pain that courses down my leg and buckles my foot from under me.
But with all of this kvetching aside, I am ALIVE. Alive!! I am here to flop around the kitchen with my daughter riding on one foot, a living "size 34" sneaker. I am here to nurse my little baby boy, watching him transform day by day into the young man he will be. I am here to go swimming in the lake with my husband, to watch the mighty red sun rise out of the sea at 5am in the summertimes, to be among dear beloveds. Sometimes I pause for this battered, scarred body that has suffered through so much and carried me through so many procedures and so much pain, and I say, "Thank you, old body. Thank you for keeping on and not ever giving up." Because I feel toward my body like one does toward a faithful old plow horse, not as swift or strong or lovely as she once was, sagging a bit around the edges but still dear and affectionate, a steady friend with whom one can comfortably grow old.
Cleaning out the Garage
I've been working at whittling away our belongings in storage and am confounded by the amount of too-large clothing I find there for my daughter, now almost four. And then I remember. Back when I was going through chemotherapy, I wasn't sure I would live. And I wanted my daughter to have clothing that her mommy had picked out for her.. so I purchased and hoarded bins full of clothing all the way up to size 6 yrs.!
I realize that, now two years out from cancer treatment, I have found freedom from that fear to such an extent that I don't really buy my daughter clothes at all anymore. She is regularly given boxes of hand-me-downs by friends, and it doesn't bother me much that I haven't picked them out myself. .
I realize that, now two years out from cancer treatment, I have found freedom from that fear to such an extent that I don't really buy my daughter clothes at all anymore. She is regularly given boxes of hand-me-downs by friends, and it doesn't bother me much that I haven't picked them out myself. .
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