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?
Monday, May 24, 2010
Saturday, May 8th was one of those perfect days. The weather cooperated, so many people got up early to see me graduate, others celebrated with me afterwards. I felt so happy, proud and loved and it truly was perfect in every way.
Though from there things began to get a little more interesting and less 'perfect.' The weekend went something like this:Saturday: I graduate from college! Summa cum laude!! I celebrate with my family and close friends. (And thanks for all the cards you have sent!! My kitchen cabinets are completely covered. It's beautiful. I will have to post a picture!)
Sunday: Stay in my pajamas all day to rest and recover from the excitement of Saturday.
Monday: I wake up feeling good, ready to face the world as a college-grad, and then the doctor calls to inform me I have skin cancer. To be precise, I have melanoma.
I'm sorry. What?!?? Did you call the wrong patient or something? I'm MS Girl...I'm not Cancer Girl! That will require a totally different cape and costume, not to mention I don't have time or energy for all new sets of fundraisers!! (by the way, Team Wearing Red Shoes has raised over $19,500 making us the top fundraising team in the entire state of Georgia for 2010!)
Meanwhile, I am so proud of my accomplishment, of reaching this goal that has taken me over a decade and many hurdles to complete, and I just wanted to spend a day or maybe a week basking in the glory of finally becoming a college graduate. Instead I spent Monday feeling scared and crying, having miniature pity-parties saying, "Why me? Why me again?"
The good news: after they cut the melanoma out they ruled me practically stage zero - the cancer was mostly contained to the tumor site (on top of my head! like on my scalp, hiding in my hair!!) though he missed a little on the edges and has to go back and cut out more. blech. But in my doctor's opinion the chance of this melanoma having spread anywhere else in my body is less than 2%. I like those odds. I meet with the oncology surgeon June 1 and then we will schedule the rest of the cutting and a biopsy of my lymph nodes to be 100% sure I don't have mean, nasty cancer cells anywhere else. I have about 6 or so stitches in my scalp, but he pulled my hairline back together nicely so I'm not bald or anything. Though it did change my natural part a bit (you ladies understand!) so that will take some getting used to. I've been wearing a lot of scarves to cover up the stitches until they come out.
I probably sound braver than I actually am.
If I think about it all too much, I completely shut down and I don't wanna leave the house, or answer my phone or read my emails, and that's not healthy. If I have learned anything from MS it's that you need help from people to get through any major crisis, whether its physical help, emotional support or just knowing there are people there that have your back when you need them.
But I'm sad, scared and angry all at once. My post-graduation plans did not include "Get Cancer." And the fact that I do have MS just complicates matters tenfold. So now my doctors are going to have to all talk to each other and figure out what's the best plan for my current/future treatments and that scares the crap outta me too. The next couple weeks aren't going to be fun, but I really truly believe that somehow it is going to work out alright.
So I just have to move forward, one day at a time, holding my breath a little until we know for sure what all we're dealing with and what this will mean for my future. Nevertheless, MS Girl will now be taking on the world as a college grad, which only makes me that much more of a badass. :-)
Friday, May 7, 2010
To the people who spent the most time and their precious fuel driving me to/from doctor appointments, so that I could save my energy for my schoolwork and classes, I give the Chaffeurs of the Year Awards to: Alice Nanda (with help from her sons Louis and Adam) and my Aunt Eileen 'Louie' Mengert.
For stocking our fridge with food when I was too sick to go grocery shopping over the past 2 years we present Shopper Extraordinaire Awards to Karen & Courtney Holder and my in-laws Barbara Faga & Paul Kulinski.
For leaving her job to pick me up at school when I found myself without a ride home (more than once!), the Search & Rescue Award goes to Beth Dieterich.
For helping me type papers when my left hand gave out on me (and learning more about Shakespeare's fools than she ever thought possible) the Helping Hands Award goes to "Lightning-Hands" Lyn Marcrum.
For their unfailing willingness to do whatever we needed whenever we needed, be it drive, cook, shop or have ginger molasses cookies on my doorstep even before the IV nurse arrived the Jacks of All Trades Award goes to Tiffany & Steven Wisener.
To the person who sadly got laid off from her job, but instead of settling in for a pity-party and Oprah-watching, called up her sister-in-law and said, "Hey, I just lost my job, so what can I do to help you? Drive? Shop? Type? Cook?" And during the toughest 6 months of my life she did all that and more. The Service Above Self Award goes to my sister-in-law Betsey Kulinski.
Within 2 hours of notifying my friends and family that I had lost the use of one arm and gained a sassy cane named Greg, this generous friend offered and spent every Friday afternoon for months doing whatever I needed help with. She typed papers, did dishes, baked cookies, made placecards, took me to Ikea and set up our entire dining room set for us. The Macguyver Service Award goes to my friend Bethany Okie.
For teaching me everything I know about theater that is worth knowing and for asking for my input and whatever expertise I might have had on his own productions. For inspiring me to go back and finish my degree so that I might someday pursue my love for educational theater, the Inspiration Award to my stepdad George Mengert.
For paying for Pace and for my first 2 years at CCM and for navigating every aspect of my medical journey with me, taking my frantic midnight phone calls, fighting for me with my insurance company and with my doctors, all so that I could stay in school and accomplish my goals: the Advocate and Support Award to my parents Larry & Sheryl Clements.
For choosing that 9am Sociology class in the fall of 2008, for driving me to countless doctor appts, sitting with me during infusions, helping type my papers, doing my dishes, folding my laundry, the list goes on. But most of all for keeping me sane with her encouraging, calming presence and always wise advice. To my 'mini-me' and partner-in-crime, the All-Around Support Award to Angela DeGroat.
She has easily driven half a million miles in order to advance my education and talents and she has worked behind the scenes for 30+ years, quietly helping me to put the pieces of my life back together every time they fell apart, so that even in the midst of great hardships I would never lose sight of who I was. When I was diagnosed with JRA at age 6, desperate to be a ballerina, she pleaded with and convinced Ruth Mitchell to allow me to keep on dancing. When CCM became too much for me and I returned home, she was the one who 'subtly' sent me the audition notice for the Atlanta Symphony Orchestra Chorus so that I would keep on singing. No matter the hurdle, she has helped me to "keep on keepin' on." The Biggest Fan & Cheerleader Award goes to my mom, Annette Mengert.
Finally, for living with a full-time college student and not strangling me every time I stressed out over an exam or was too hard on myself about a paper. For being supportive of my decision to go back to school even when it meant seeing less of me and seeing less money in our bank account. For being understanding about what a perfectionist I am and trying to get me to dial it from an 11 down to an 8. For putting all my papers and exams on the fridge no matter what the grade. For encouraging me when I was scared, and telling me time and time again how proud he was of me for making this decision and seeing it through, the Better Half Award to my husband, Chris.
All of you and so many more have made it possible for me to reach this point: hours away from being a college graduate. I couldn't have done it without you.
(And even if I could have, I wouldn't have wanted to.)
As my dear friend Dorothy says: "You're the best friends anybody ever had."
Thank you for helping me to join the graduating class of 2010!
Wednesday, April 21, 2010
As of today I have 2 more papers, 3 more exams and the presentation between now and May 3rd...and then...I will be a college graduate!!! Only a few years ago I swore up and down I would never go back (never say never, right?) and now here I am. I even managed a 4.0 last semester with Greg in tow and only one working hand (and lots of help from my 'Helping Hands' - you know who you are!)
Alright, I only allowed myself this brief break from Paper 5 of 6 (sounds like a Star Trek character, right Dad?) and now I must return and eventually call it a night. So I am off the radar until after May 8 (Graduation Day!) and then the very next weekend is WalkMS Atlanta on May 15. If you haven't signed up already, we would love for you to join us. The more the merrier (Red Shoe World Domination!!!!)
Sunday, March 14, 2010
Team Wearing Red Shoes is back for its 3rd year in a row and we are gonna be bigger and badder than ever (and by badder I mean more Fabulous, of course) as we take over Piedmont Park on Saturday, May 15th for WalkMS 2010.
Put on some red shoes and join us, or if you can't be with us on May 15th we hope you will support us by making a donation. Any amount is greatly appreciated!
Our team page: http://nationalmssociety.org/goto/wearingredshoes
Hope you can join us on Saturday, May 15th. It's an amazing event filled with hope for a world free of MS...not to mention 50+ pairs of red shoes!
Friday, February 12, 2010
Plenty of us show no outward appearance of the disease, while others have quite a hard time hiding their symptoms. Some people are diagnosed and then go years before having another relapse...some MSers never have another relapse. They take their injections, and go about their life with symptoms, but no relapses, no new lesions or inflammation, no disease-progression. It is pretty awesome that drugs exist (known as Disease-Modifying-Drugs, or DMDs) that help so many people to live life as normally as possible. And it is wonderful that these drugs work and these people can go years without the stress, pain, hassle and fears that come with a new relapse. I know many of these people – doing well, clean MRIs, "stable" and I am really happy for them.
I also totally hate their guts.
Okay, hate is a strong word (thanks, Mom, for hammering that into my brain as a child). I don't hate them. I just sometimes want to punch them in the face. No! That’s not right either. It’s jealousy. Plain and simple jealousy. I want to BE these people. I want the drug that works. The one that I shoot into my leg or arm every day and the one that keeps the MonSter quiet for longer than three months at a time.
So in October, two months into my Relapse from Hell, Greg and I had become best friends, completely inseparable and I had lost 80-90% function of my left hand, not to mention 100% feeling in it, with numbness and pain elsewhere too. I was a mess. Well, it turned out my brain looked even messier than I did and my October MRI was so full of lesions and inflammation it looked like a damn LiteBrite on the films. This worried my neurologist so much he called me at home right after he read my MRI. He also told me to start considering going onto a new drug called Tysabri.
Tysabri has a love/hate relationship in the MS world. People love it because it works for a lot of people - it gives them function back. It takes pain away. It is only given once a month via IV infusion. No shots Every Day! People hate it because it comes with some risk factors. Okay, actually it’s just one major, MAJOR risk of developing a crazy rare brain infection called PML (the acronym for Progressive + 2 other words that require a medical degree just to pronounce!!). PML has been known to cause severe disability, even death. I did plenty of research on Tysabri and PML, as did my team of doctors, and the risk for developing PML is less than .05%. Plus no one has ever contracted PML in their first year on Tysabri, so first 12 months are like a free pass.
This week just finished infusion #5, so I am four months into my 12-month grace period. Greg and I "broke up" shortly before Xmas. (My family then all tells me they "never really liked him anyway!" hahaha) AND...I am typing this to you with BOTH hands. Slowly, I am playing piano again (though I had to get out my easier piano books and "reteach" Lefty how to play. It’s amazing how the brain works and that you can reconnect neural pathways that weren’t talking to one another! And my MRI done in January showed that all the inflammation I had in October was gone and I had no new activity or lesions. My brain is no longer swollen!!! Yippee!
So obviously Tysabri is working. And I am SO incredibly grateful.
I am optimistic and hopeful for the first time in a long time.
So why then is there this little voice in my head saying, "Oh puh-lease. This won't last. You won't feel good for very long. It's only a matter of time. I mean, hul-lo?? Your MS track record ain't so good, babe. Keep dreamin’ that this drug (your third in less than three years) is actually going to work. "
I hear this annoying voice and I realize that part of me is waiting for the other shoe to drop. I am not just optimistic. I am trepidatiously optimistic. (I realize that may not be a word, but I like it, so I’m keeping it).
And I find I am rather annoyed at myself for feeling this way.
Then I remember that I sort of have a right to feel this way, to some degree. I mean, in my first two years with MS, I relapsed SIX times. Which is more than three times the average for most folks with MS. I always knew I was special! Ha.
Seriously, though, relapsing has become a way of life for me:
I relapse. I let my family know. Our Moms bring food and make sure our fridge is stocked. I email our friends and by the time I am hooked up to IV steroids, Tiffany has already baked a batch of her famous ginger-molasses cookies and delivered them (or sent Steven over with them) because they knew that is the only thing we have ever found that gets rid of the awful metallic taste I get in my mouth from 3 days of Solu-Medrol. Chris works from home more to help take care of me. Angela drives me to the classes I feel up to going to. Alice, my mom and my aunt Eileen drive me to my doctor’s appointments. People come help me fold laundry or type my papers for school. When we go out in public, my friends offer me arms and hands to hold onto because they know I am unsteady. After almost three years, all of this has become almost second nature.
But in the past two months I have slowly started to feel like a real, whole person again. If you count August as my official last relapse-start-date, then this, right now, is the longest I have ever gone without a relapse. < knock wood > And so of course I am looking around for that "other shoe." It might be any day now...next week! Or it will probably be over my spring break since Chris and I are planning to go out of town. Or it will come during finals week. Any second now....BOOM! I won't be able to walk or Lefty will give out again and I'll be back to needing help tying my shoes or...or...
I could go on forever worrying about what might go wrong, where in my body it might go wrong, how much it is going to hurt and when it is going to happen. But it is completely unhelpful because Right Now I am not relapsing and my MRI was clean and my left hand is working and I don’t need my cane anymore. The pain is manageable and I don’t feel as overall terrible as I did from August through December.
Sometimes it just feels like a bad dream that I had. And I have woken up and I feel okay, and I can type again and play Oscar when I want to, and I am a Senior in my final semester about to finish my undergraduate degree! And I love my house and I am married to a wonderful man and I have the best family and friends of anyone in the whole world and Right Now I am going to appreciate my body and all the things it can do for me Today.
As much as I would LOVE to know what will happen tomorrow (and then plan accordingly for it, of course!), I just can't. No one can. I am wasting precious energy (aka Spoons) worrying about the Ifs and Whats and Whens and Hows. I am going to try as hard as I possibly can to just enjoy Today, to be present in whatever I am doing, to try not to worry so much and to hold on for dear life to my Optimism.
Meanwhile, I am going to tell the Trepidation to find somebody else's shoes to mess with. Both of MY red shoes will be staying tightly on my feet, thank you very much.