Category: health

I tried to set up these links for the sidebar on Mom’s blog, and somehow accidentally put them as a post. I’ve finally wrangled them into her sidebar but the formatting still looks off to me. (Time to dust off my html-coding-skills, I suppose!) Anyway, I wanted to share here as well. Info about symptoms, risk factors, treatment, research, and events abound:

Ovarian Cancer Research Fund
Ovarian Cancer National Alliance
National Ovarian Cancer Coalition
Gynecologic Cancer Foundation

Hope Line for Ovarian Cancer:The Hope Line, 1-877-OV-HOPE (877-684-6731), is a free telephone counseling and referral service that helps patients and families cope with the challenges of an ovarian cancer diagnosis. The Hope line was launched by a unique partnership: L’Oreal” Paris, OCRF, and CancerCare, a national non-profit which provides free counseling and education service to individuals and families affected by cancer. The Hope Line is staffed by CancerCare’s professional oncology social workers. The Hope Line operates Monday through Friday, 9 a.m. to 5 p.m. Eastern Time.

I’ll add more resources as I come across them – feel free to add others you know of in the comments and I will amend this list.

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My mom met her oncologist on Thursday, and in one of the weirdest blessings God’s ever given me, the bad news didn’t sound too horrible.

Dad and I said later that we were both expecting to hear the worst of verdicts – something like, “There’s nothing I can do.” And I can’t speak for him, but I’d been feeling God prepare me for that situation. I was full of sadness, but yet peace in knowing that God is sovereign, as I wrote in my earlier post. Anyway…

So the doctor explained that Mom has Stage IV ovarian cancer. It’s not considered “curable” but it is treatable. Next Wednesday, Mom will have a pre-op visit with Dr Burke, a gynecologic oncologist in Savannah; as soon as he can fit her into his OR schedule, she’ll be having a total hysterectomy and exploratory abdominal surgery to remove the tumors that have metastasized there. (Like I said, that’s kind of bad news.) Further, she’ll begin chemotherapy in hospital and repeat chemo doses every 3 weeks. The goal The prayer is that the debulking surgery will remove nearly all the cancer and that the oncologists will find the best chemo cocktail to put her into remission. So when you consider the news we were anticipating, this sounded absolutely encouraging to me! I felt nearly light-hearted.

Once we know a surgery date, I’m going to try to head South to be with Mom & Dad. Keep praying!

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Fifteen years ago, my cousin lost her dad to cancer during my sophomore year of high school. I realized that cancer was the pits.

Nine years ago, my then-fiance discovered a lump and my life tilted on its axis and I realized that cancer is more than the pits. Cancer sucks. And surgeries and chemo treatments and CT scans took over our calendar for a while, and Chris got a clean bill of health, and in the midst of it we managed to have a wedding and apply to medical school and life went on with a beautifully clean bill of health.

Two years ago, our dear Yaya was diagnosed and this stupid disease reared its ugly head in my family yet again. I knew more about what to expect, but it’s still so hard to see someone you love enduring tests and procedures and treatments. The months went by and Grandmother Nancy finished her chemo and life settled in again.

Last week, my mom got some absolutely stunning news. In a completely roundabout, accidental way, an ultrasound looking for one problem found something different: a pleural effusion. Pathology analysis on the P.E. fluid revealed that it was caused by metastases in the lungs; the primary tumor site is still unknown. We’re flabbergasted. Mom hasn’t been “feeling sick” or experiencing symptoms that would make us wonder if something was brewing. And here we are, as she shuttles all over town to every doctor you can think of for every test they can order. Next week she’ll have a PET scan, which Chris says is likely the best source for discovering the original tumor and any other mets. Then on Thursday, she’ll have her first meeting with an oncologist, who will (hopefully) have all the tests results by then and will be able to lay out a full diagnosis and a plan for treatments.

It goes without saying that I covet your prayers – for my mom (Cheryl) and my dad (Jud); for my brother Jason, his wife Sharon, and their 5-year-old son Dylan, and for my little family. Waiting is tough. Waiting for results is tough. For mom, all the tests are probably wearying and some of them involve drinking nasty stuff or having scopes or needles aimed her way. Yuck.

As I have prayed this week, the thing I keep coming back to is that God is Sovereign. He is sovereign when life is good; He is sovereign when life is bad. I do not doubt His extravagant love for my mom or the others in our family. I believe that He weeps along with me every time the enormity of this situation hits me fresh, and I am comforted by the fact that He promises to make all things beautiful – in His time. It can be so difficult to see the beauty, or the joy, or the peace at a time like this – but I trust that God can bring all of that: beauty, joy, and peace, and more, from this part of our lives. A couple of weeks ago I was reading for my Bible Study group & I came across the Bible passage that tells us “He knows the end from the beginning” and that resonated with me like it never had before. I trust that God has been preparing my heart for this valley, and that He will lead us through it, a gentle Shepherd.

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Yesterday, I took Jonas to the “oprah-pedist.” An orprahpedist, in case you hadn’t heard, is a kids’ doctor who checks to see if your bones are strong. {Insert 3-year-old muscleman pose here.} Sometimes, the orprahpedist wants to take special pictures and you can’t say “CHEESE!” – you have to wear a heavy shirt and sit very, very still. And sometimes, the oprahpedist will watch you run or walk or sit or bend your legs. He’s a boy and he wears long pants that are blue like Daddy.

***

When Jonas was about 18 months old, my friend Holly noted that he “W-sits” and told me I should encourage him to sit other ways (like criss-cross… which is what they used to call Indian-style, back in the pre-PC days of my childhood… or sidesitting). The thing is, I’m a “deep” W-sitter too, so it never really jumped out at me when he would sit that way.

When he turned 2, Chris asked me to bring it up at his well-child checkup. The pediatrician said that the way he was sitting during that visit was nothing to worry about. We brought it up again at his 3-year WCC and the pediatrician said that his posture was “deeper” than the last time she saw him. She suggested that we work on it at home – encourage him to “fix your feet” when we saw him W-sit, maybe do some stretches to help loosen his hamstrings and make criss-cross sitting more comfortable for him.

That was February. Over the last 7 months, we’ve done a lot of nagging encouraging and a lot of stretching. Unfortunately, he hasn’t gained any improvement in the flexibility of sitting criss-cross (his hamstrings are super-tight and his knees stay up HIGH when he sits that way)… and as time went by, Chris did more & more reading about the ‘dangers’ of W-sitting and became concerned that this would do long-term damage to his hips.

So we went to our family doctor and got a referral to a pediatric orthopedist. Our wait time was horrendous (um, yeah. If you schedule me at 3:00 and tell me to be sure I’m there 15 minutes early, DON’T then have your clinic running 2 hours behind schedule. At least have the courtesy to call and say that you’re running that late & give me the option to show up & wait or reschedule. Grrr…) but once we were in to see the doctor, it was a great appointment.

The fellow came in (and my son walked right across the room to her, stuck out his hand, and said, “Hi, I’m Jonas.” She said, “My name’s Hillary. Nice to meet you,” and shook his hand. “Nice to meet you!” he responded. Could I be prouder!?) and took a brief history, then did a quick exam.

Wait, wait, wait a little more. The ortho came in and repeated the exam, asked if we’d ever had x-rays taken, had Jonas run up and down the hall. Then he sent us back out to the waiting room… where we were paged to radiology. I couldn’t go in with Jonas (because Susannah’s too little to be in the X-ray room) so he went in with the tech all by himself. No fear, no anxiety, just walked on in like such a big boy! Back to the waiting room… back to the ortho exam room.

The films were online in just a few minutes, and Dr. Tamai said he was really impressed at how clear & symmetrical the picture was. (Most 3 year olds wiggle. A lot. So their x-rays tend to be blurry due to the motion.) He also told me that Jonas was incredibly verbal, articulated well, and bright. {Again with my mama-pride. That’s my boy!} And tall (of course he asked, “How tall is Dad?” 😀 since Jonas obviously doesn’t get his height genes from me!) and a fast runner. Jonas loved hearing that!

The official assessment? Jonas just has wierd hips. “He’s just built that way,” the guy said. 🙂 He has a wide range of motion to rotate his hips & knees inward (femoral anteversion, it’s called) and much less ROM to rotate them outward. But since it’s “just the way he’s built,” the doctor said that not only would Jonas not need surgery or other drastic interventions… he doesn’t need any intervention. No physical therapy (which was a surprise, we were 100% certain we had a lot of PT in our future for this) and no need to constantly tell him to “fix his feet.” No prognosis of future hip problems, either. YAY! (But also a tiny bit of annoyance that we did all that worrying… and all that waiting at Children’s Hospital yesterday!… for nothing. But that’s really tiny, because it is good to hear the experts say that everything is fine.)

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So, Susannah’s still in biweekly (every other week) physical therapy for her torticollis. The PT observes her in several different positions as Susannah plays with different toys — lying on her back, resting on her stomach, belly crawling, supported on her hands & knees (because she doesn’t stay up like this very long on her own!), sitting, pulling up to her knees, and supported standing. Right now, Susannah tends to have great positioning when she is sitting & supported standing – a barely perceptible tilt, if any. When she plays on her back and on her tummy, she occasionally still “drifts” to what we call her “comfort position” which is now about a 5-degree tilt.

Then the PT puts her through her paces – stretches that tilt and twist her neck, stretches that reinforce her natural inclination to “head righting” if she’s held on an angle or perpendicular, stretches that strengthen her trunk and abdominal muscles. She also massages Susannah’s neck and does occiput manipulation, which very gently pulls the bones at the back and side of her skull into position (because one of the long-term effects of untreated torticollis can be misshapen heads, apparently – so it’s important to gently train those bones into the right spots while they are still forming and hardening).

Each time we visit, I update the PT on any new milestones Susannah has achieved. Each time she advances, the PT likes to hear whether she’s working on her physical skills symmetrically (ie, when she started belly-crawling, I had to pay attention to whether she was only pushing off with one knee and dragging the other leg or if she was only pulling the weight of her body forward with one arm and letting the other be slack). Fortunately, Susannah has never shown this tendency of some tort kids to have asymmetrical development.

As it stands right now, we have no firm plan for discontinuing therapy. However, at this week’s appointment (9/22) our therapist mentioned that we might look into using a TOT collar for a short time to “finish up her therapy.” While I hate the idea of using a neck brace on her – my poor baby! – I’m excited about the prospect that it would be enough to help her ‘graduate’ from therapy a little quicker. It’s similar to those helmets used for plagiocephaly, in that it’s only for a prescribed amount of time per day (in Susannah’s case, the PT said, it would be no more than 2 hrs total in a day). And for kids who have a slight, but persistent, remaining tilt, it provides a gentle “cue” when they tilt their head and feel the plastic tubing to straighten up. I’m supposed to watch Susannah carefully over the next two weeks and report on how frequently throughout the day she tilts, and we’ll discuss at our next visit. It should be interesting to see what happens.

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In the bathtub tonight, I started thinking about my scars.

I have a scar on my left elbow, about half an inch long. It’s thin and silvery now, a scar you wouldn’t even notice if I didn’t point it out. I got it a long time ago – my freshman or sophomore year in high school – when our church youth group went on a whitewater rafting trip. We each got these big innertube rafts to float down the river in. I dove into the water and swam up into the center of my raft; as I broke the surface of the water I pushed my arms upward to grab the top of the innertube. Lucky me – the metal prong for filling the tube with air was missing its cap, so it scratched my elbow and left me with an indelible reminder of an otherwise unremarkable day. Every time I see it, I can see the exact shade of blue-gray that was in the sky that day, I can still hear the carefree laughter of my group of friends.

My left knee bears another mark I’ll never forget. It’s even older – it dates back to our time in Fort Hood, Texas. I was probably 10 or 11. Jason was playing soccer, and we had carpooled to one of his games with our next-door neighbors. The soccer players (Jason and JC) barrelled out of the  minivan, heading toward their teammates. 5 year old Nathan pushed past me at the van door to follow his big brother, and I fell into the parking lot. Anyone else would have just gotten up, brushed it off, and never looked back. But I fell on the exact spot of the pavement where a tree root had pushed through, breaking the concrete into a jagged cliff. Now I have a two-inch long gash on my knee raised into a gnarled keloid. I’ll never forget the sights and sounds of that day, either.

Most of my scars are small. Insignificant. One perfect round circle left from the chickenpox when I was 12. Three tiny, hair-thin welts on my right thumb from our cat Linus’ kittenhood. They were small to begin with; they have faded over time.

I have a new scar. It feels big. Ugly. (I’m told that it’s actually “a beautiful incision site” and that it was sewn expertly and that it has healed perfectly according to expectation.) I’m torn… which is an interesting description for my feelings, considering the subject matter here. – I hate it. I hate to touch it; to feel the numb flesh just above the scar that reminds me of all the layers that had to be cut through. I hate the way my skin pulls toward it. I hate to imagine the way it will balloon out if I ever carry another child. On the other hand, I can’t deny it. It’s part of my story now; it’s the opening stanza of Susannah’s story. It brought her into my arms, for better or for worse.

Even though my surgical birth was not an “emergency c-section,” when I think about it – when I talk about it – the words that come to mind to describe what happen are harsh. “They cut me open,” I tell Chris, “and some stranger ripped my baby out of my body.” The surgeon was a nice woman. She was kind. But it was not supposed to be her job that day to pull my daughter out of my abdomen. It was supposed to be my job, my job to birth my Susannah into my own hands or the hands of her father. I was going to look into her eyes for the first time as she laid on my belly, warm and new and squishy. I was going to do things differently. Every time I see my scar, that’s what I think. It bears witness to all that went wrong that day.

And yet. Every scar starts with something going wrong. A rip, a tear, a gash – from a fall, a collision, a puncture, an incision. The scar, though, is proof that you survived it. You knit back together. You healed. I am going to run my fingers over the scars that have turned silvery and breathe deeply of the truth that this scar will fade in time. It will always bear witness to that day, but not solely to what went wrong – it will also stand as testament to my strength and resilience, as reminder of my capacity to heal.

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Meet the author

MICHELLE NEBEL

I write uplifting women’s fiction woven with threads of faith, grace, and Southern hospitality. My blog is where I share a glimpse of my life, and I hope you’ll find the thoughts here encouraging!

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