Wednesday, January 16, 2013
Thursday, November 15, 2012
Monday, October 8, 2012
"Congratulations. When are you due?"
I think it's so cool. Instantly, I have something in common with millions of people. Then said strangers (who happened to be a mother and father of 2) out of nowhere launch into their "birth stories" - the unsolicited, unwelcome stories of how their two little ones arrived in this world. And trust me, the stories didn't go, "And it really wasn't as bad as we thought it was going to be." And this is by no means this first time this has happened to me, either with birth stories or tales of parenting that will challenge even the strongest of stomachs.
Imagine if you will, that after meeting someone who has recently been diagnosed with MS , I immediately respond with:
"Oh my God. It totally sucks. I had seven relepses in the first two years. None of the medicines worked for me. Pretty soon I couldn't walk without a cane and one arm was totally paralyzed. And the constant nerve pain and pain from spasticity - It's so unbelievably awful."
C'mon. Really?!? Can you imagine me saying that to some newly diagnosed person who has barely learned to pronounce "multiple sclerosis?" Of course not. I would never do that, because that would be unbelievably cruel and insensitive, right?
No matter what facade these people are trying to maintain, I know one thing with 100% certainty:
They are absolutely terrified.
I also know that they are looking to me, the MS Veteran, for hope and reassurance. New MSers are desperate to talk to other MSers - they need to know that someone else has come before them on this crazy journey. They need to feel that they are not alone and that, somehow, it is going to be alright.
Of course, the difference here is that there are a lot of wonderful, positive emotions associated with finally becoming parents, but let's be honest: We are also terrified.
So what is it about so many Veteran Moms (and Dads) that, upon finding out you are pregnant, makes them immediately want to terrify you further, rather than reassure you? What good does that do? Is it some sort of hazing ritual?? Nothing anyone says can possibly prepare you for the things these people are describing related to labor, childbirth and parenting in general, so why bother scaring first-time parents with the horrific details, which does nothing but keep us up at night worrying ourselves sick.
I can't tell you the number of people who, after hearing our good news, have launched into the unsolicited, gruesome, terrifying stories of their own childbirth experiences. Not just strangers - people that I consider my dear friends do this, too. And with nothing to compare it to (my melanoma surgery was pretty barbaric - does having my head ripped open and put back together like Frankenstein count?) I try to sit there politely and listen, but honestly I wonder what their agenda is. Are they somehow looking for my sympathy? They sure as hell can't be looking for camaraderie and the trading of war stories. Um, hello? I haven't yet been to the war you people are talking about!!!
I have to keep reminding myself that these Moms and Dads must mean well, that they must be truly happy for us and they aren't actually trying to keep me up at night tossing and turning, certain that every awful thing that happend to each of them will, in fact, happen to us. I also have to remind myself that, much like MS, pregnancy, childbirth and even parenting are hugely different experiences for everyone. Poll ten people, get ten entirely different stories.
Nevertheless, if you are a Veteran Mom or Dad, please, I beg of you - for the love of all that's pure and holy - save your terrifying, gory, horrific war stories for after we First-Timers have our little ones safely in our arms. Then you can "initiate" us or whatever it is you are doing and we can all trade our gruesome details till the cows come home.
Just as I was once a terrified, clueless MS Newbie, please try and remember you were all once terrified Newbie First Time Parents, too. And anyone going through such a major life change needs allies and people on their side. We are counting on your wisdom and experience. We're going to need all of you Veterans to turn to when we have 5 million questions about this new person coming to live with us in a few short months.
MS, children, family drama, money problems, issues at work - it doesn't matter what the issue at hand is - mainly we are all just looking to feel like we're not alone. Sometimes all we really want to hear is:
"It's okay to be scared. I was scared, too. But everything will be alright. You are going to be just fine."
Saturday, August 11, 2012
Years ago, I started doing research on what it would mean to become pregnant while living with MS. At the time my disease wasn't "stable", and my doctors agreed it wasn't safe to start trying to conceive. So I busied myself with gathering as much information as I could get my hands on about what happens when a woman with MS decides to try and carry a child.
Turns out, there ain't a heck of a lot of info out there
In fact, women who get diagnosed with MS and then decide to have a baby are actually a very small subgroup. My neurologist and ob-gyns could count on one hand how many they have ever had.
On one hand, I totally get it. MS is devastating and one of the most unpredictable diseases out there. You don't know if you will sail along fine for years or if tomorrow you will wake up with certain limbs not working, or not be able to see. And from what I hear (and my many friends tell me) parenting brings its own set of unpredictable challenges. It's a lot of unpredictability for someone to consider undertaking.
But if you are reading this, you probably know me well and you already know I rarely shy away from a challenge. Certainly not one as worth having as this.
Furthermore, most of the studies and medical journals I read stated that during pregnancy, most MS patients feel amazing. Relapses are rare during these 40 weeks and, in fact, many symptoms (even ones we have had since Day One) mysteriously disappear during pregnancy. Sadly, they usually return with a vengeance along with a 50-60% risk of relapse after the baby is born. But, seriously - the past 5 months - it is the best I have felt in 5 years. I have some symptoms off/on but nothing like I normally have. It's like an MS vacation!
So even though we are a super small subgroup, and I can understand an MSer's reticence to start a family, I would argue that in many ways, women with MS are as capable of handling pregnancy than anyone. Maybe in some ways, more so. I got to thinking about it and it inspired a Top Ten List.
So for your reading pleasure...
Top Ten Reasons Why Women With MS Are Already Prepared For Pregnancy:
10. We are expert patients. We have spent years of our lives in doctor's offices and navigating the medical system. We know the drill. We know to ask lots of questions, take good notes and we aren't surprised by waiting hours to be seen by a physician.
9. We already meet our deductible every year. Easily done when our medications cost upwards of $9000/month! So while it might be a shock for a healthy person to shell out $3000-$4000 for their labor/delivery hospital stay, many of us will receive a $0 labor/delivery charge. Sure nice for a change!
8. What body image issues? If you have been a generally healthy person with normal weight your whole life, then suddenly gaining upwards of 30 lbs could be a hard adjustment for your ego. But I say, give me pregnancy weight gain any day of the week. Adjusting to my body image as a disabled person with a paralyzed arm who walked with a cane was 20 times harder than gaining 30-40 lbs for a really good reason. Bring on the cookies.
7. Bladder issues. Been there, done that. MSers are sadly used to our bladders not always being under our control, especially during relapses. We already mentally take note of the nearest bathroom everywhere we go, so we are totally prepared for pregnancy bladder!
6. Pain and discomfort..but actually for a purpose. Yes, pregnancy is uncomfortable and often painful. As I write this, I have gotten no more than 3-4 hours sleep the past few nights due to the shooting pain in my hips that forbids me to go back to sleep. The heartburn/reflux alone is enough to knock you on your butt. But as long as I live, I will never forget seeing a facebook post as a friend of mine went into labor: "It's pain for a purpose! You can do it!" At the time, I was writhing in purposeless nerve pain from MS and my herniated disc and I was so disgusted and disheartened I almost threw the laptop across the room. Last night's pregnancy pains had me in tears, but I am comforted by the fact that (finally) this pain is most definitely for a purpose!
5. Fatigue is part of our daily life. Hey - most of us already own shower seats for when we are too tired to stand up and take a shower. Yes, pregnancy makes you tired. And MSers definitely are used to extreme fatigue. We have learned to manage "our spoons" as best we can.
4. We are used to not being in control of our bodies. For many pregnant women, this is the first time they have had little to no control over the physical (and emotional) things happening to your body. Other forces have taken over! I had to admit years ago, that I was no longer in control of my body and that many times the MonSter held the reins and I was along for the ride. So far, even when I'm in pain or feeling crazy hormonal, I much prefer this baby's way of running things over the MonSter's!!
3. We had to learn to say No years ago. It's such a tiny word and yet so difficult to say, especially to the things we really want to do. But managing a disease like MS means saying NO...a lot. It sucks, but it is necessary to our health. Pregnancy is not a lot different. It's important to acknowledge what your body needs, even when it may not be what you really want to do.
2. We also became experts at asking for help when we need it. This is maybe one of the most important. I can safely say that for the majority of my peers, being pregnant and having a kid was the biggest "medical" thing they had ever experienced. For many it was their first hospital stay, or first surgery and therefore, their first recovery. Chris and I both have learned the importance of asking for help and we are blessed with an amazing village that has risen to the occasion so many times for us. Pregnancy/childbirth/having a newborn will be no different. We know we will need help, from our friends, our family, and from professionals. I am no less of a person or a mother because I can't do it all myself. We all need help sometimes! Certainly during a major life change like this one.
1. We are thrilled to be a patient with a positive medical issue! No one congratulates you when you show up to their office with MS or cancer. I am so used to the sympathetic looks of healthcare professionals as they hand me a new diagnosis, or tell me what surgery I have to have, that this whole experience has been such a unexpected joy. How often in life do you get to be at the doctor's office for something positive?!
Thursday, July 26, 2012
Monday, April 30, 2012
Obviously, I don't write quite as often as I used to. This is partly because the MonSter has been playing nice lately and I am rather enjoying living my life without it constantly digging its claws into me. But I would be lying if I said that was the only reason. I hate to admit it and seldom say it out loud but my eyes give me a hell of a lot of grief, all day, every day. I have adjusted and I continue to adjust to them.
Between the double vision and the severe dryness, my eyes get tired very easily and when I try and do too much reading, driving, TV watching or spend too much time staring at a computer screen they get angry very quickly. It can be a total bummer, especially when I am in the middle of reading an awesome book or desperately trying to play something on the piano only to have the notes swim together on the page. I laugh when I think I actually used to work in a IT/Training Department and spent 8-10 hours a day on the computer. The thought of trying to do that now is completely insane.
And in today's online culture, it is hard sometimes to feel like I am not missing things when I only spend a tiny fraction of my day on any sort of computer, as compared to much of the world. Then again, maybe it's not such a bad thing. It means I have to carefully pick and choose what I spend my time on. I have to prioritize my precious eye time and say no to alot of things that I would have spent time looking at in the past. And while it pisses me off sometimes, is that really such a bad thing?
An old friend of mine wrote a book recently called The Information Diet and while I am certain his target audience was not people with visual impairments, the message actually applies to us all equally. Maybe it's okay that I don't consume as much information online as a I used to. More that half of what I used to do online was "junk food" anyway. Was any of it really making me a better, smarter, well-rounded, more interesting person? Probably not.
So what if I don't graze through the amazing things on Pinterest as often as I would like? Instead I played a new song on the piano that one of my students wants to work on. No, I didn't click on that article about so-and-so and what they wore or and I didn't read through everything on facebook, instead I drove to meet my best friend and we had a wonderful, meaningful conversation over tea.
I think like many things in life, it's about moderation. Eat what you want, just not too much of it. Have a glass of wine now and then, not the whole bottle. Spend some time on the internet, or on your smart phone, not all day, every day. More than ever, I realize the importance of taking time to 'unplug' from it all, to limit my time spent at the computer and in turn, avoid that feeling of sensory overload on my eyes and my mind. And despite occasionally feeling like I am missing out on things, in the end I hope to be a more relaxed, slightly saner version of myself.
Monday, April 23, 2012
Tuesday, April 3, 2012
Friday, February 3, 2012
You go into the woods, where nothing’s clear, where witches, ghosts and wolves appear.
Into the woods and through the fear, you have to take the journey...
Into the woods you go again, you have to every now and then.
Into the woods, no telling when. Be ready for the journey.
The way is dark, the light is dim...
But everything you learn there will help when you return there.
Into the woods you have to grope, but that’s the way you learn to cope.
Into the woods to find there’s hope of getting through the journey.
God, he's really a genius. Isn't he saying that we all go through the woods at various points in our lives? Everyone's woods are different and some people spend (a hell of a lot) more time there than others. Life forces us, often time and time again, to push through the horrors and the awful realities. But in doing that, we are learning how to fight. We pick up our machetes and slice our way through the forests or we climb a tree for a bird's eye view to find our way out.
I wish I had the answers. I wish I knew why so many of us keep getting thrown back into the woods and tossed to the wolves. I wish I knew why other people are lucky enough to spend hardly any time there at all. I wish I could go to the festival (only true Sondheim nerds will get that one!)
Thursday, December 1, 2011
Wednesday, August 10, 2011
Wednesday, June 15, 2011
"How's your MS doing? Is it stable?"
My knee-jerk reaction was,
"No. I have relapses every 3-4 months."
But that's not true.
I haven't had a relapse in 22 months. That's almost Two Years.
And that, my friends, is the clinical definition of: stable.
Stable. Even now that word feels so foreign. It was something far away, that I wasn't ever going to be able to achieve no matter how hard I tried...and yet here I am. Sure, no doctor would look at my chart and call me nice things like "healthy." In fact, after reviewing my chart most doctor's favorite word to describe me is "complicated."
Okay, fine. I'm complicated. But I'm also stable!
Finally, I can look at MS as something other than this all-consuming, relentless beast that can't be quieted for more than months at a time. Finally i can see it as this thing that i live with that does affect much of my life and my day-to-day decisions, but that it's just one piece of who i am. it doesn't own me like it used to, and it sure as hell doesn't define me.
There is a great murder mystery series by a man named Stephen White. The books revolve around Dr. Alan Gregory, a psychologist who always seems to find himself wrapped up in some homicide, which he inevitably helps to solve. The books are fast-paced and entertaining and the supporting cast of characters are truly unforgettable...from the sarcastic but lovable police detective to the wonderful wacky neighbors and fellow psychologists.And there is Lauren Crowder, the alluring and sharp-witted Assistant District Attorney with whom Alan falls in love. The series also follows their romance as it evolves. And the real zinger is that Lauren has MS.
"Why me? Why not me? I've been eligible for many blessings in my life. I've been fortunate in so many ways. I think it would be remarkably arrogant to rule myself ineligible for any hardship that might come along. Indeed, why not me? I'd like to think I'm as well prepared as anybody for living with this illness...Multiple Sclerosis is one of the constellations in my sky. It's there. Like the Little Dipper. Sometimes it's obscured, sometimes it's the brightest light in the sky. but it's always there. I don't think about it all the time. When I do look up, it's there. That's all, it's just there. Part of my sky."
Even if I wake up tomorrow with some horrible relapse, I know now that this place of acceptance exists for me.
I know that "stable" was achievable.
It's just there, that's all.
Tuesday, May 24, 2011
The last week of April the Pace Academy Theater Dept put on a hilarious show called "The 25th Annual Putnam County Spelling Bee" and its director (aka my stepdad) George Mengert and his cast and crew took it upon themselves to try and raise a few extra dollars for the National MS Society. They donated 10% of all the ticket sales and after each performance, all the actors were in the lobby collecting donations to fight MS and encouraging the audiences to give generously. Each of those high-schoolers stood out in the lobby, not just waiting passively for donations, but encouraging each theater patron that passed them by to support their cause.
Their perseverance and tenacity paid off and after 3 performances, the cast/crew of "Spelling Bee" sent in a check for $1878 to the NMSS! I am so proud of these kids and of George's creative idea that I could just burst! A huge thank you to my stepdad, to Beth Barrow-Titus and to the amazing cast: Tony Papadopoulos, Benjamin Harris, Hannah Hoff, Lauren Gold, Kitty Cook, Larisa Bainton, Megan McCurry, Colin Barham, Patrick Corbett, Ben Hirsch, Sterling Butler, Cory Bush, Sam Downey, Taylor Williams, Kate Kolbinsky & Alexandra McCorkle. Thanks also to Nicole Hammons & Michelle Yancich and to Phil Bush for the PR help and to Stephanie and Rebecca Husk for taking charge each night and rounding up those dollars!
So as of today, Team Wearing Red Shoes is #1 in the state of Georgia having raised $28,332! Holy cow, Batman!!!
Also wanted to give a quick plug to my childhood bff, Jennifer (Macchia) Frankowski who has signed up for a NMSS fundraiser in Philadephia next month. Here's the link if you want to check out her event, the MudRun and support her on her crazy endeavor.
Jennifer and I celebrate our 25th anniversary as friends this year and she is the most awesome wife, mother, daughter, sister and friend and I am so lucky to know her.
Knock 'em dead, sister!
So you see, with a little creativity and a little help from my friends, we can basically conquer the world. Or at least get a heck of a lot closer to conquering MS. Be warned - Your days are numbered, MonSter....
Tuesday, April 5, 2011
This year is not so much about a few people giving large amounts – it’s about lots of people giving what they can, however small. We have had more $20 donations than ever and we could not be more thrilled, because it means there are still people out there who care about what happens to people living with multiple sclerosis and to awesome nonprofits like the National MS Society. We care very much and that’s why we are determined to break $20,000 this year.
The walk is this Saturday, April 9th at Piedmont Park and any support from our friends is appreciated more than you know. Give what you can and thank you from the bottom of our hearts.
XOXO, Caroline & Team Wearing Red Shoes http://nationalmssociety.org/goto/wearingredshoes
Monday, March 21, 2011
Oh and the top photo - I classify that as fun, too. Those are all of my Get Well Soon cards and they always manage to put a smile on my face. All in all, I am continuing to heal - on the inside and out.
Thursday, March 3, 2011
Hence, I have been crying a lot recently. Some tears are ones of joy and relief that the pain is finally improving and that there is a light at the end of this tunnel...a valley at the end of the mountain? A calm after the storm?? I can never remember which analogy I've been going with!
Other tears are because I’m afraid. I don't trust that the light I'm seeing isn't just some lone, dusty flashlight instead of the bright light of day waiting for me to emerge. I don't trust the ground beneath my feet anymore. It's sort of a pessimistic, even cynical point of view, I know - but it's honest. Other than trying to flat out convince myself that everything will be alright now, I think that time is the only thing that will prove to me that I really am okay, that it isn't a trick, that the next mountain/storm/mudslide/quicksand/tunnel isn't just waiting for me right around the corner.
And lastly - the pesky, neurotic tears - the judgmental ones that are disappointed that I am not "handling" myself and my emotional responses better. The ones that say, "Jeez, Caroline - get over yourself and stop your whining and your fear and move the hell on without all these tears already!"
Ah, the flipside of the Type-A-Perfectionist - she often comes with a self-critic harsher than any who ever worked for the New York Times. So instead of trying to will myself to “Get over it,” I have decided the better solution is to focus on two things for the next 60 days:
1)To silence or at the very least ignore the Critic. She does me no good right now. If I have to, I will plug my fingers into my ears and shout, “La la la, I can’t hear you!!”
2)I am going to try and have some fun, dammit. (Sorry but that just really needed an emphatic “dammit” on the end. I tried it without and it was totally not the same.) I’m going to remember what it’s like to leave the house other than to go to doctor appointment, go out to dinner (which I have sadly only done once in 4 weeks), see friends, plan parties, go to the movies, whatever I can think of that makes me happy right now.
If I had a friend who had survived cancer and 2 major surgeries in 8 months and done it all with grace and class, I would tell her to have some fun...dammit. I would tell her she deserved at least that. I would tell her she deserved more than that. I would tell her that she didn’t deserve to have to undergo all that crap, all while juggling a whole host of other diseases on the side. I would tell her it is okay to cry for a little while, whenever she wants to, for any reason at all or for no reason at all. I would tell her she is stronger than she thinks she is but that she shouldn’t feel guilty when doesn’t feel so strong.
I would tell my friend all of those things without judgment or hesitation. Then I would take her to the movies, buy her the biggest tub of popcorn with butter and salt, choosing a stupid romantic comedy if she needs to laugh, action/adventure if she needs to escape or drama if she needs to cry in the comfort of a dark theater.
I need to be a better friend and tell myself all of that, keep repeating it, write it up and down my arms in magic marker if I have to. I will be forgiving and patient and kind. I will stop judging myself for not having everything figured out yet. After all, my friends and family are all human (I think) and they are not perfect. So I should stop expecting myself to be…or at least, that’s the plan.
Wednesday, February 23, 2011
Great appointment with the surgeon yesterday. My x-ray looked great. Everything where it is supposed to be, my new disc nice and centered in between my vertebrae. All in all, I am ahead of schedule in terms of healing (an overachiever, obviously) and so the doctor said I can start leaving the house in "small doses," as long as I promise not to overdo it. Which as you know, for me, is quite difficult. But I've done pretty darn well staying house-bound and not losing my mind for almost 3 weeks here. I'm even impressed with myself.
So maybe I will start to see you all out there in the real world in the coming weeks. In the meantime, enjoy the above photo of my x-ray that Chris snapped with his phone. The brighter white thing towards the bottom of my neck is my new disc. I'm officially bionic!
Friday, February 18, 2011
"Were you trying to say something to me?"
"No," I replied, "I must have been talking to the TV."
To which he says, "Yeah, you've been doing that alot lately."
You cannot help but laugh at what happens on a totally unconcious level when a person is home alone for such extended periods of time. I talk to myself regularly anyway, but talking to the television (was I talking to the characters on the show? Did I think they could hear me?) is a new low. Don't get me wrong. I'm laughing as I write this. It is pretty ridiculous.
But then yesterday I found myself getting truly angry - at the weather.
Yes, the beautiful, un-winter-like, high 60s, not a cloud in the sky weather we've had this week. Which would be perfect, if I could get out and actually do something - even drive around in my car with the windows down and the music blaring sounds amazing.
But when you are under doctor's orders to not ride in a car, all you want is cold, rainy, gray weather that doesn't make you feel so bad about being stuck inside. I could drink lots of tea, work on my puzzle, watch movies. So I woke up yesterday pissed off and finally forced myself to put on real shoes and go for a walk around my block (which is one of the few things I AM allowed to do!) And it improved my mood.
My goal is to make it to Tuesday, when I go to the doctor for my follow-up x-rays and visit. We will make sure everything is holding up, staying where it should be and I will ask what he thinks of me leaving the house some by the end of next week. Two of my first Triple Threat Theater students are starring in "Beauty and the Beast" at Pace next weekend and I really want to be there to see them!
In the meantime, I have a lot of awesome people who have made these 2 weeks bearable:
To the many meal providers: Barbara & Paul, my sister Bets, Mandy, Patty & Johnny, Kimmy, Van & Rebecca, Louie & Ray, the Holders, the Wiseners, the Dieterichs, Aunt Mary, Jeanette & my Greek family - thank you!
A big thanks to my "personal shopper" Peg, who has made 2 trips to Publix for me and brought me a much needed frappucino yesterday!
And to my many visitors who have come by (or are still planning to come by) to cheer me up and cheer me on: Angela & Kenney, Mom, Dad, my sister Erin and my nieces and nephew who made me cards and cupcakes, my pilates instructor & friend Marci, my voice student Hannah who brought soup and stayed for tea...I know I'm missing people but you know who you are and you have all kept me sane.
Thank you to my Mom who woke up at god-only-knows-when to get to Northside Hospital at 5:15am so Chris and I wouldn't be alone and who stayed until after 5pm to make sure we were okay. And to my Dad who arrived almost as early, stayed through my surgery, went home and came back with my stepmom that night to check on us.
Thank you to my mother-in-law Barbara who brought much needed sustenance and cheer to Chris and my parents in the waiting room. And thank you to my stepdad who not only visited me in the hospital (and I know how much you love hospitals, George) but has called often with gossip and stories to cheer me up. Thanks to my grandparents for calling to check on me and for making me laugh - crucial to healing!
And a big thank you to Tiffany St.John and the folks from one of my favorite restaurants, Muss & Turners who brought over food yesterday as their get-well-soon gift to me. (So now you all have to go eat there seeing as how they are so generous: www.mussandturners.com or their other newly opened place www.localthree.com).
And one last interesting bit of useless knowledge. Apparently the "retail price" of the new Synthes Cervical Pro-Disc in my neck: $16,500. Yep, that's right. My neck is now worth more than both of our cars combined! Granted, there will be "insurance adjustments" and whatnot but how insane is the MSRP on an artificial disc?!? We are extremely blessed to have good insurance and I am extremely blessed to have a husband who works so hard at his job (and at taking care of me) so that we can have good insurance, a decent income and a nice house in which to spend my house-arrest. I love you Christopher.
Thursday, February 10, 2011
Trying my best to manage the pain both around the actual incision and the pain towards the back of my neck which I imagine is from the digging around they had to do to find the disc, pull it out and then make room for the new one and tightly wedge it in there so it doesn't move. At least that what it feels like happened. My neck is still swollen, not too bad visibly but swallowing is slightly difficult. I have take small bites and tilt my head a certain way and even then it is pretty uncomfortable. And as luck would have it, apparently nerves have a long memory, especially for pain, and sometimes even after the actual pain-inducing object has been removed, your nerves still can flare-up and remember the torture you put them throough for 2 long years. At least that's what my doctor tells me is happening as of a couple days ago when my nerve pain returned after a nice long holiday weekend off.
I'm not really worried long-term. I do think the surgery worked and this is merely the climb back down the mountain which can sometimes be harder than the climb up. Case in point: we were watching this tv show called, "Everest: Beyond the Limit" or something like that last night and they say there are more people who die on their descent down Mt. Everest than those who die trying to make it to the summit. Which is to say, coming down the moutain sure ain't easy either. Yesterday and today have been really rough between the fatigue, the surgery site pain and my old nemesis nerve pain. Living with it all at once is not a lot of fun. Again, I'm not worried about the long-term, but the short-term is just, well, crappy.
Mentally speaking, just like being in an MS relapse, recovering from major surgery is very isolating. My surgeon first told me I was not allowed to drive or even ride in a car for FOUR weeks. We told him that was impossible, since Tysabri beckons to me every four weeks and I am due for my fix of it on the 28th. So I think now I am under house arrest for three weeks, essentially.
One week down, two to go.
Here's hoping I don't lose my sanity or that Chris doesn't divorce me before February is over.
Thanks for the visitors who were able to come by this week.
If you didn't get a chance to pop by, don't worry - you still have at least 2 more weeks in which I will be here day or night, rain or shine. So if you find yourself in the area or want to drop in for a cup of tea, I'm here...working my way down the mountain.
Friday, January 28, 2011
Maybe it’s genetic. My dad is 5-Star General list-maker - I am like, a Lieutenant or something. We make little lists for everyday things (pick up dry cleaning, book doctor appt, go to Target, etc.) We make lists of things we want and/or need to do "sometime" but who knows when (buy a new toaster, insulate pipes, clean out that closet...) We also make lists of the things we want to experience and/or accomplish at some point in our lives.
In the past few years I have often told myself that I will get to all these things "when I feel better.” Except that for almost five years my life has been filled with these medical mountains I keep climbing and conquering but there always seems to be one more in my path.
Despite beating melanoma and finally getting my MS stable, I’m still in horrific pain every day with this ruptured, herniated disc in my neck that has been hanging out with me for two years now.
So I’m scheduled for neck surgery one week from today, Friday the 4th. My second major surgery in less than 8 months with a 4-6 week recovery period, assuming it works, which I believe it will.
I hope it will.
Actually - I’m terrified that it won’t work.
Okay, and yeah - I’m scared out of my freaking mind about having a neurosurgeon open up my neck, and be so close to things like oh, my vocal cords and these things called laryngeal nerves and well, my spine!
So, you see, all this stuff I have on these lists, well, they're just going to have to wait until when I feel better.
Then the cynical side of me can't help but think that this IS my life now. I may never really be, nor ever really see myself as "healthy" ever again. So what choice do I have?
On the days when I am scared, tired, in pain and feeling hopeless, I guess I have to find the courage and energy to do the things that I care about and to make the best of them in spite of feeling not-so-great about 50% of the time. It sure as hell isn't what I imagined my life would be like but here I am.
And much like going back to school at age 29 with MS, each list item is terrifying because it means making yourself vulnerable and facing failure – again and again and again. It means leaping into the unknown and having faith that somehow you will land on your feet, or at the very least someone will reach out a hand to help you up after you’ve fallen flat on your face.
"All of our dreams can come true; if we have the courage to pursue them." - Walt Disney
To be perfectly honest, I don’t feel "better" yet. I may never feel “better.” And still the world goes round.
I guess that means I am just going to have to be a little more creative in accomplishing my goals. And every so often I just have to scream, "To hell with you MS!" or "Screw you Cancer!" and go ahead and do what I want to do.
I owe that to myself. That's my responsibility to myself. As an old friend once reminded me, "Responsibility is the ability to choose your response. You choose how you react to your life." He was right.
Underneath the pain, the diseases, the depression, the anger and fear, I do have the ability to choose how I respond to these mountains and roadblocks put before me. I don't always choose correctly. But even on days when I'm certain the Universe is never going to tire of beating me senseless over the head, at the very least I can remind myself that I am not as powerless as I may feel. There are still things I can control.
Today I choose hope. I hope this surgery will give me a better quality of life with less pain. I hope this will be my last surgery for a very long time.
Forever would be best.
Tuesday, January 11, 2011
Wednesday, December 29, 2010
A few weeks ago my dad had foot surgery and I went over to check in on him and to take food to him and my stepmom. For once, it was me that had to remind someone else to sit down, to rest, to let me get up and fetch this and that, to prop up pillows and help him get comfortable, to ask if he needed any medications, etc. After making Dad some lunch, my stepmom came into the room doubled over in pain and it turned out she needed to get to the emergency room immediately. Luckily, I was there and able to drive her to the ER and try to get her the help she needed. I went to the nurses’ station to nicely ask for warm, clean blankets when the IV nurse didn’t know what she was doing and got blood everywhere. Then I went back to ask (a little less nicely) when a doctor and/or medication would be arriving because my stepmom was in excruciating pain. I waited with Sheryl until her mom came to take my place and I went back to check on the other patient. I then made more trips back and forth bringing overnight bags, making dinners, etc. Over ten hours later I made it back home, exhausted but very thankful that I was there and able to help. (She is doing much better now, by the way, and slowly getting back to her normal, high-speed pace!)
Fast forward to last week and my poor husband had his wisdom teeth out, which many of you may remember how unpleasant the whole thing is. I drove him to surgery and this time it was me who took pre-op and post-op notes from the doctor and drove my drugged-out, gauze-packed husband home. And for once it was me who spent the weekend fetching, medicating, feeding, pillow-propping and reassuring him that even though it hurt like hell and he felt terrible, that it would get better.
I hope that my tone here is appropriately conveying that none of this ever felt like a burden or a chore and not for one minute was I resentful, annoyed or otherwise bothered by taking care of people I love. I was just so grateful to be able to be the "Caregiver" for a change. It gave me a perspective I had not had for quite some time - that in some ways, being the Caregiver can be just as hard as being the Patient.
As the patient, I am used to the feelings of guilt, and often feeling tired, alone, helpless and in pain. I had forgotten the worry, the fear, concern, the fatigue and feelings of helplessness that go along with being the caregiver. In the first 24-48 hours following surgery, Chris needed a lot of my help. More times than I can count he said, "I'm so sorry you have to take care of me like this," and every time he voiced such sentiments I just shook my head and replied, "You never need to apologize to me for that." Meanwhile I was mentally shaking my head at myself for the thousands of times I have apologized to him for having to take care of me. I guess I’m not the only person out there who feels guilty for needing other people’s help!
No one wants to feel weak and vulnerable like that. I sure as hell can't stand it. But I think this month has taught me that taking care of those we love and being taken care of is a two-way street. Maybe it’s our parents who take care of us until one day they need our help and the tables turn. Some of us may have a sick spouse who gets better and some have spouses who stay sick for their entire married lives. It isn't always equal as to who plays what role more often and it definitely isn't fair. But I think it is inevitable that we all get to play the roles of both "Patient" and "Caregiver" at least once in our lives.
And since I know that hoping for everyone I love to remain perfectly healthy, strong and accident-free for the rest of their natural lives is maybe a bit unrealistic, I will instead hope that I get more opportunities to play Caroline the Caregiver and give back to those who have given so much of themselves to Caroline the Patient.
Wishing everyone a safe, healthy and happy new year.
Sunday, November 14, 2010
I have never been able to finish any of them for two reasons:
1. The pain interrupts me during every rough draft and every rewrite and the mere thought of sitting down to edit/write/rewrite makes my pain spike out of control since sitting and typing makes my herniated disc very angry.
2. I keep trying to write eloquently about Pain.
I have since concluded that there is nothing eloquent about Pain and for now, I give up trying to write about it in such a way. There are no words that can capture the true nature of relentless, mind-numbing, bone-jarring, cruel and intense pain.
Which is to say: Pain sucks. It sucks really really bad.
It affects everything I do and every decision I make all day long. The choice of whether to stand and eat my dinner versus sit on the floor versus sit in a chair leaves me in the kitchen holding onto my plate with tears streaming down my face, because I am so afraid of choosing the wrong thing which will lead to agonizing pain for hours to follow. If I have to live at this level of chronic pain for too much longer I think I'm going to lose my mind.
I am over it. I am so totally over it.
There are no words to describe how over it I am.
So I will merely leave you with this, courtesy of my friend Kimmy, which is the closest I have found to capturing the true nature of pain, while still being funny at the same time. Mind you, it is a sick, twisted sort of funny.
(Note: The following contains adult language and mildly disturbing cartoon stick figures. Viewer discretion is advised.) Alternate Pain Scale.
Friday, September 17, 2010
While I believe you have to wade through the muck before you can fully appreciate what's on the other side, sometimes you just need a break from all that mess. You need to remember what its like to just have some fun. Sometimes you need a muck-free weekend
My muck-free weekend was DragonCon.
Yes, its true: I am a geek, a nerd, a dweeb, a sci-fi-freak. I love all things Star Trek and Star Wars, vampires, werewolves and superheroes. I come from a long line of self-professed dorks.
On Labor Day weekend thousands of nerds just like me take over downtown Atlanta attending parties, seminars, panels, contests on their favorite comic books, movies, TV shows and books. Last Friday my Dad and I went and enjoyed some of the best people-watching in the country, we checked out the dealer rooms and we might have even snagged a Star Trek actor's autograph. On Saturday we attended the annual DragonCon parade with a bunch of friends. If you have never been, go ahead and make plans to go next year. There is not a more impressive display of geek-ness anywhere in the world, plus the costumes are insanely awesome.
On Sunday, Chris, Van, our fellow geek-friend Rebecca and I all dressed up (yes, in costumes) and marched down for an afternoon at "The Con." Here's a picture of us.
The result of all this was twofold:
1) We had So. Much. Fun. for 4 hours I forgot that I just went through horrible surgery and survived cancer. For 4 hours I forgot that I have MS. Its so rare to have several hours at a time when this happens and when it does I am so grateful for it I could just burst into tears.
2) We discovered that dressing as superheroes at a convention full of nerd gets you a lot of attention! There we were just walking through hotel lobbies and complete strangers would come up asking to take our picture. I cannot even count how many pictures we posed for, but there is a real chance it surpassed a hundred. I kept thinking, this is the closest I will ever feel to being a celebrity! It was the self-esteem boost I needed. Having recently felt so self-conscious about the new scars on my face and my ravaged scalp, I cannot tell you how much it meant to just feel that I could look normal - okay, well maybe not 'normal' but we did look good!
The makeup is long gone and my long black wig has been put away. My scars are still pink and fairly visible, my hair is thinning, my scalp is covered with scabs and with bright red new skin forming where scabs were and then there are the ever-so-attractive bald patches. But even with all of that, I find that I feel a little bit better looking in the mirror today that I have in months.
For 4 hours I got to be a comic book character, a crime fighter. And even with my costume now hanging in the closet I feel like I could kick ass and take names and not look half bad doing it.
Sunday, July 25, 2010
Then someone tells you that the battle is over and that you have won. You have survived lab tests, PET scans, biopsies, lymph node dissections, surgery and 24 staples being jabbed into your head and ripped out of your head and you are covered with new battle scars, both visible and invisible.
But I don't have cancer anymore. They got it all out. That should make me really happy, right? And it does. But even that doesn't change the fact that having just survived another major ordeal on the battlefield that is my health has left me flooded with all those feelings I did not have time or energy to deal with during the fight. And they are overwhelming, making me question everything, making me wonder if there will ever really be a time in my life when my body is not fighting a serious, major battle.
The past 3 years have been a nonstop fight against the MonSter. Sometimes he wins, sometimes I do. Every time he rises up to challenge me, I put on my battle armor and I fight as hard as I can. Then just when I think I may have won, he's back again. War has become my new life. Hitting the MonSter with steroids, trying this injection and that infusion and those pills, seeing this doctor and that doctor. Seeing doctors has been my full-time job for over 3 years now. If only I got paid for it. I literally schedule my entire life around my doctor visits, infusions and therapies.
As Tysabri started finally working, I began improving and went through my final semester of college without a single relapse, the longest I have ever gone without one. I finally started breathing again. I remembered what it was like to feel sort of normal. I was hopeful about my future and the possibility of doing things and not having diseases rule my life and my calendar.
Then this new opponent – Cancer - showed up and I went through the old familiar motions of pulling my armor, not yet even dusty, out of the closet and putting it on. I am now beginning to understand that it is not during a battle, but after that we finally allow ourselves to mentally process what just happened and sift through the many emotions that a crisis brings with it. And when you factor in how many life-changing diseases I have been diagnosed with in such a short amount of time, the treatments I have endured, the symptoms I have learned to cope with...well, it all has a cumulative effect on one's ability to stay constantly positive and hopeful. And I find myself wondering if the past 3 years are now indicative of what my life will be like for the next 30 years and that chases my hope even further away.
In the past 2 months I have earned the titles of College Graduate and Cancer Survivor. I am proud of both, but it all has left me feeling that melanoma has forever stained what should have been at least a brief period of satisfaction and pride. Instead I find myself feeling scared, insecure and extremely frustrated. A friend recently said to me, “Recovery is not a straight path.” I guess I am learning to walk the winding road of feeling better and then worse, of moving forwards only to move backwards and not knowing how long it will actually take to be “healed”…if that word is really even attainable.
Honestly, I’m sick of healing, of constantly finding myself in a state of recovery, if not from one disease than from another. I’m sick to death of being “sick.” I’m sick of being back here, left in the wake of some disease and seeing the damage it has done to me, my body, my loved ones and my life. I’m sick of coming out of the mud only to realize that it does not wash off as easily as I was promised and in some places it doesn’t wash off at all.
I am emotionally exhausted and not looking forward to the soul searching that will follow as I decide what comes next…of course, factoring in the limitations of my health and the fears that these many diseases have now ingrained in me. I am trying as hard as I can to embrace the meltdown, so to speak…to let go, and find whatever lessons there may be hidden within it.
I am dealing with the aftermath.
But as one of my favorite quotes says:
The distance between who you were to who you are becoming is where the dance of life really takes place. – Barbara DeAngelis
So I guess I’m dancing.
Monday, June 28, 2010
All 8 of the lymph nodes they biopsied came back clean and they also got clean margins from the re-excision of my tumor site. No more cancer for me!
I am one week post-op and coming along. The swelling is going down, there's some bruising, we've made it through washing the southern hemisphere of my head but the northern hemisphere still hurts too much to touch. Staples and stitches are due to come out Friday if they continue to heal well. I'm still pretty tired as my body heals and I am doing my best to take it easy and let people help me. Mostly the MonSter is playing nice, though having major surgery is something that can trigger him to rear his nasty head. I try not to think about that and just focus on resting, healing and staying inside where there is lots of A/C!!
Thank you for all the well wishes and prayers.
We appreciate them more than you know.
Thursday, June 24, 2010
The surgery went really well though. They ended up taking 8 lymph nodes out of my neck, from behind and in from in front of my ears. Apparently the oncologist said it was a "lymph node wild goose chase" to find them all. I like to make people really earn their money, ya know? ;-)Results from the biopsy will be in either tomorrow or Monday.
He then cut out another 3x5cm section from my scalp which hopefully will turn out clean margins, meaning all the melanoma is out of my head. Then it was the plastic surgeon's turn to sweat and earn his money. He said he was worried about closing me, that the hole might be too big and might need a skin graft. eek!! Luckily, he is a genius and was able to do this thing called a pinwheel flap or advanced rotation flap where he makes a lot of incisions all over my head, cutting and stretching little pieces together until they finally cover the hole completely. So yay to no skin graft! Boo to major MAJOR headache. I definitely do NOT recommend scalp resonstructive surgery, so please avoid it if you can. ;-)
So they sent me home Monday night covered in gauze and compression bandages. Mom said I looked like a nun, being wrapped around my head, chin and forehead. I think "nun" was the nicest thing she could think of and I really looked more like the Mummy.
The first couple days have been rough (as all post-op days are for anyone!) but I got my bandages off yesterday and can move my jaw again and I slept in the bed last night instead of on the recliner! Yay for small victories! Everything feels really tight and swollen. My face is pretty swollen and bruised which it may be for a while. Overall though, I believe I have traded my Mummy look for that of Frankenstein. Truthfully, I have not looked at my head. I am choosing not to until it looks a bit better. With all the physical trauma who needs the extra emotional trauma of forever having those images burned onto your retinas? I sure don't. However, Chris described it a bit and it involves a bunch of staples and stitches and incisions and I am fairly certain I would give Frankenstein a run for his money.
Luckily, I am related to 2 of the best dressed women on the planet (my Mom and Grandmother) and they have loaned me a zillion fabulous scarves, which may be part of my wardrobe for a while as my head heals, and hair figures out which way it is going and the parts they shaved grow back in. Luckily they didn't have to shave too much. It could be a lot worse! I also have several new hats thanks to Grandmother, my mother-in-law Barbara and my friends Lyn & Jen. It will be a new style era of fabulous headwear for sure.
Anyhow, I wanted to put an update out for everyone to see. I am not lying when I tell people I have the best support system of anyone in the world. Thank you for all the emails to make me laugh, the sweet voicemails and awesome cards. (Once I feel a little better I will take pictures of my kitchen and post them - it's amazing to see all the cards!! I think I am single-handedly keeping Hallmark in business!) We have a few more rough days ahead as we endure the healing process, but at least we are in the healing process thank the Lord.
Will post the biopsy results as soon as I have them!
Sunday, June 20, 2010
For the past 15 years I have had the immense pleasure of having a stepdad who loves me, makes me laugh and taught me everything I know about theater. Before I knew he would become family, he influenced my decision to go to Pace...which is of course where I met Chris, so in effect, my stepdad could also claim to be responsible for introducing me to my husband.
Then of course, there's my Dad. Now I know everyone will say they have a great dad and all. And I believe you. But seriously....not kidding around...my Dad is a rock star. I mean, he is actually a Rock Star. Well, by day he is a pediatrician and looks after people's babies, but by night he plays in a band called Paradocs and a few years back they invited me to come sing with them and now we have a pretty decent band and my Dad and I get to rock out together.
Suffice it to say that my Dad is 100% responsible for my musical talent.
Well, I don't know...my Mom does a pretty mean version of both "Bali Ha'i" from "South Pacific" and the "Feed the Birds" song from "Mary Poppins", so really we'll say Dad is 98% responsible. :-)
For as long as I can remember I have loved music and it has been a huge part of my life and it is my Dad who gave this gift to me. He has that musical genius ability to be able to hear a song once and then play it on guitar (I hate people who can do this and I hate he did not pass this gift along to me!) He picked out our first piano, a beautiful Schumann baby grand and we named him Oscar. After Oscar arrived, Dad showed me which note corresponded to which piano key and from there, I taught myself to play. Oscar and I became the best of friends and when my parents divorced and we were going to be spending more time at my Mom's apartment closer to Pace, Dad told me to take Oscar with me. Even though owning a baby grand had always been my father's dream, he said Oscar needed to be wherever I was because we were meant to be together and we have been ever since.
I could write about so many things, including this generous spirit that my Dad has always had. For example, how many people form a rock band and go on to play dozens of charity events raising money to fight cancer, diabetes, HIV/AIDS, MS and more?? He is that kind of doctor, too, going above and beyond for his patients. When I was a little girl, he had a patient come in with a horrible heat rash, and discovered that the single mother was having financial troubles and living in a small apartment with no A/C...in the middle of August...in Atlanta. Most doctors would have prescribed applying cool compresses and ibuprofen for pain and then sent them on their way. Not my Dad. My dad went to Home Depot, he bought an air-conditioning unit which he paid for out of his own pocket. He then drove to their 110 degree apartment and installed the unit for them. That's the kind of doctor and man my Dad is.
People say things to me about how "unlucky" I am, especially when it comes to my health. Sure, I probably have more incurable disease than most, many of which are difficult to treat, to say the least. But how can anyone be more equipped to handle them all than me, because unlike the rest of the world out there fighting diseases, I have Dr. Larry Clements on my side. To say that I am lucky to have my Dad as a father is the understatement of the century. Not only did he give us a happy, often magical childhood, but he has been my superhero physician for 30+ years, giving me advice, doing research whenever needed, calling whomever was necessary to ensure that I receive the best possible care and treatment for any/all of my illnesses.
It is no secret I am a Daddy's Girl, and while this phrase may have negative connotations for some people, if you were MY Daddy's girl, you would have nothing but positive, wonderful things to say about it, knowing that you were the luckiest girl in the whole wide world.
Happy Father's Day, Daddy!
I love you more than words can say.
Friday, June 18, 2010
Hopefully someday soon we will all look back and laugh about the ridiculousness of the "Melanoma Melodrama."
In the meantime, my surgery is this Monday, June 21st. I will basically be at the hospital all day but I luckily don't have to spend the night. First, they will inject me with some sort of radioactive dye (between the PET scan and now this I am surely going to turn into some sort of superhero - aren't there a lot that began with exposure to radioactive material?) After that I have to sit and wait for the dye to spread from the tumor site down into my lymph nodes then they put me under, take a bunch of my little lymph nodes out, cut out a bunch more of my scalp, then they attempt to put Humpty Dumpty back together again. The plastic surgeon who is sewing me up isn't sure what methods he will have to use, as he will decide that based on how much scalp the oncologist leaves for him to work with! (gross, I know.)
Thank you for all the emails, cards, phone calls. We really appreciate it. And thank you for all the offers for food, help with chores, driving, etc - we will be taking everyone up on them once we know a bit more what we need.
Send happy thoughts my way on Monday. I go under around 2pm and the whole thing should take around 3 hours...and then we are on our way to leave the Melanoma Melodrama behind us once and for all.
Friday, June 4, 2010
Just when my MS starts to behave and I think I might get a short break from all the “off-roading” I find myself thrown off the path, once again covered in mud.
But how deep is this mud? Is it quicksand-mud? Or just a little bit of dirt? Can I easily walk out of it and get back to the path or will I start to sink?
It is going to take a little while to figure out how deep or how shallow this cancer-muckity-muck is. I am stuck in the mud waiting on phone calls with my PET scan results and my LDH levels or with dates that my surgery can be scheduled. Then I will wait to see how the surgery goes, how much they have to remove and how extensive the repairs will be to the tumor site, whether it will be an easy close or will require reconstructive surgery. They will take out 3 or 4 of my lymph nodes and I will wait some more in the mud for them to tell me that they showed no signs that the melanoma has spread, or they will tell me the unthinkable news that it did show up in my lymph nodes.
People come to visit me in the mud, standing cautiously at its edges. My regular doctors and nurses come by and new doctors and nurses appear to join my Care Team. Friends and family arrive, at the ready in case I start to sink and they need to reach out with branches or throw ropes.
We are waiting to see what the mud does, to see how I react to this new mud and to see how long it will take to get out of it, so I can get back to the path that I was on…the path which will inevitably have changed by the time I return to it. So I will have to go in search of it, or else find a new path altogether, which is sad, scary, exciting and infuriating all at once. I wait in the mud and it’s lonely and messy and not at all fun.
And even though there are people all around me, I am the one back in the mud…still in the mud. Alone.
Some days are easier than others.
And some hours are simply unbearable and I am certain that I cannot possibly stand one more minute living in this muck and if I don’t get out soon I am going to lose my mind.
I just want to be a normal, healthy, non-mud-covered person making my way down the yellow brick road. Is that really so much to ask?