A Light at the End of the Tunnel

The CMTA announced today that Congress has passed a $1M bill to begin a national CMT Resource Center for patients and families of patients of CMT.  Finally, a step forward in increasing research for this debilitating disease.

Hurry! Buy One Surgery, Get One Free!

Just when I was beginning to accept my diagnosis and was getting preparations underway for my impending surgery, I visited the endocrinologist this week for my semi-annual exam to monitor my thyroid growths we discovered 18 months ago.

My visits with Dr. Brett are few and far between, but she is always pleasant and talkative during the exams. But, Tuesday's appointment was different. While viewing the lumps on the ultrasound, she was very quiet. . . I immediately knew something was wrong . . . well, actually, I already had my suspicions that something was wrong before I even walked in the door that morning.

After the ultrasound, she immediately brought out her sketch pad and began writing down a surgeon's name as she proceeded to tell me that the lumps have not only enlarged again, but have become calcified, which has been causing my general discomfort and increased fatigue the last few months. She said that Dr. Genden is very well renowned and would be able to remove my thyroid with a very quick recovery time and limited discomfort. What? She's recommending we remove my entire thyroid?

Fortunately, Dr. Genden had a cancellation this afternoon, so I got the chance to sit down with him and get his valued opinion. He agrees that the recent changes to the lumps do pose a serious risk for cancer in the future and recommends that we remove the thyroid. He warned me that while the removal is imminent, it was definitely not urgent. But, when I mentioned to him that I already have an orthopedic surgery scheduled for January, he immediately got excited at the idea of doing both surgeries simultaneously. He told me he can work on one end of me while Dr. Weinfeld remains master of his own territory at the other end. . .

So, come next month, we'll be removing my thyroid and repairing my ankle. . . I'd be lying if I didn't say that I am doubly scared now, but I think that anything to avoid cancer is good and the opportunity to have only one hospital stay and one dose of anesthesia is also good . . . perhaps I should ask the hospital if they have some sort of "twofer special" or if I can get a free upgrade to a private room with my large spend next year. And, fingers crossed, maybe I can get Dr. Genden to turn my metabolism "up a notch" with my post-op meds, allowing me to drop a dress size or two . . .

It's Official--The Date is Set

January 12th . . . the day I will get my new foot and ankle. Dr. Weinfeld informed me Monday, while pointing to my x-rays on the wall, that we will NOT have to fuse my ankle (how fortunate for me), but that I will soon be a red flag for the Homeland Security Watch List and a constant nuisance to the TSA once he inserts 4 different bolts and a variety of titanium anchors in my left foot. When I asked if my left foot would now be a completely different size than my right foot, he replied, "well, your foot will definitely be a different shape than the right one, but we can't tell right now if your foot will be an entire size larger . . ."

Great! I love it when the answers are so clear . . . I guess I will just have to put off purchasing any new shoes until Spring.

In the meantime, preparations continue. I decided last week during Open Enrollment to change over my health insurance from United Healthcare to Aetna on January 1; the coverage will be much better and likely leave my out-of-pocket expenses for the surgery at zilch. Luckily, I made the right decision . . . when speaking to the surgical nurse yesterday, she happened to mention to me that Dr. Weinfeld has decided to no longer accept United Healthcare insurance next year! Just a small, minute, completely insignificant detail he failed to tell me!

Deep inside, I am still sorting through all my thoughts and feelings related to the diagnosis, this surgery, and my overall health this year. At lunch with a colleague today, she confided in me that she requested a promotion and was sharply denied one. . . the conversation then shifted to both of us discussing our personal goals and how our careers have evolved over the years. It was the first time I had been able to verbalize how important it is for me to focus on my health this coming year and to just maintain my current position. As the words came out of my mouth, I was sharply surprised at my own present lack of desire to prove myself. . . I am perfectly happy with the status quo and have no expectation to be promoted any time soon. I think that I just have to focus on remembering to take my vitamins and supplements, enjoy the upcoming holidays, work hard to get through physical rehabilitation, and try to look forward to a rewarding vacation next summer.

On another note, according to my rough estimate, I figure that following this surgery, I will have spent approximately 20% of my life on crutches . . . will it ever end?

Can You Spare a Mile or Several Thousand?

Plans for the surgery are coming along--I would say swimmingly, but it's not like this is an event I am excited to be planning. . . I met with HR on Friday to discuss my short term disability options and once again I am amazed at the power of Viacom. Not only do I continue to have job security in this economic crisis, but I will be able to collect 100% of my pay while I am out on medical leave. What other companies can you name in America that still offer 100% of your pay while you're lying on a bed doped up on morphine unable to perform your job duties? (Continue to make every effort to keep Paramount Pictures as an integral part of my exit/return strategy to LA--check!)

I am meeting with my doctors again next week to hopefully set a surgery date and to discuss options for my right foot. My goal is to have a date set before the holidays in the hopes that I can use a confirmed hospital stay and sad puppy dog eyes to tap into that "obligatory holiday season generosity" to get whatever I need for my recovery . . . so, while it's still a little early, here is my first request:

I plan to stay away from the office on bed rest for three weeks. I have three people that have graciously offered to fly to NYC to help me with my recovery. But, here's the catch--I just can't bring myself to ask them to pay for their own tickets to get here (they are already donating their furlough and vacation time after all). I figure I have enough miles to cash in for two tickets, but not enough for a third. So, does anyone have a bank of extra frequent flyer miles they'd be willing to donate to a good cause? If you think you could possibly live without that business class upgrade to Europe next summer, I would really appreciate your sacrifice.

I can offer a heartfelt written thank-you note and a basket full of SpongeBob products as barter!

CA Dreamin'

After a brief business trip south of the border, I headed to CA for a long weekend to visit the fam and to see my nieces and nephews in action.  After a fun-filled weekend, my oldest brother took me to see his orthopaedic surgeon on Monday morning to get a second opinion regarding my ankle. After about 45 minutes of an onslaught of questions and a close examination of my MRI, Dr. Legome said very simply, "you have a lot of problems my dear, and I am sure you already know that." He continued by confirming everything I've been told, including the diagnosis of CMT and telling me that not only should I have the surgery, but that the quality of my life entirely depends on it. He then spent the next 15 minutes lecturing me on losing weight . . . as if I didn't already know that was an issue!

I completely lost it then and there; I finally let all the fear, anxiety, and anger release from inside. . . I think I was still hanging onto a small sliver of hope or a medical miracle when Dr. Legome validated everything that I have been wanting to avoid. And, now that the right foot is hurting also, we asked if I should take the plunge and have both feet operated on at the same time. He thinks it would be far too traumatic for my body, so I have to make plans for how to address that foot sometime in the future. Thank goodness I had my big brother there to put his arm around me; I don't think I could have handled another doctor's appointment by myself.

I managed to board the plane Monday night with dry eyes. . . I joked to myself that I think I am finally moving past denial and straight into anger! I'm progressing . . . definitely progressing! That's good, right?

Baby Steps, Baby Steps

After writing a teary-eyed post Monday night, hitting re-dial with what seemed like a bazillion times, and an ever-growing panic attack at the thought that my world as I knew it was falling apart, I finally reached Mom on the damn phone sometime late Tuesday afternoon to finally get that all-knowing "motherly advice" I desperately needed. We talked about my options for scheduling surgery, discussed how this diagnosis is now going to change my lifestyle, and tried to speculate why it has taken 32 years to finally get the answers to all the questions we have been asking since the day I took my first steps. (Yes, apparently there have been clues that a trained physician could have deciphered at any point before now . . . whodathunkit?)

We both agreed that I will probably have a much more enjoyable holiday season without a full cast, crutches, ice packs, and narcotics (although they might be more cheery with drugs and alcohol, I am sure). I also recognized that I was becoming increasingly overwhelmed at the idea of leaving the office and all my open projects in just three weeks (with one of those including a foreign business trip). Additionally, by delaying the surgery, I can afford some time finding another doctor to offer a second opinion.

After a few days of thoughtful consideration and a long talk with my boss, I've decided to schedule the surgery in January 2010. I figure I am already in constant pain, but the pain I will feel post-surgery will be much worse; and, I really want to be able to sit on the floor opening gifts under the tree on Christmas morning with my nieces and nephews. Plus, after having to endure my birthday with a broken foot three years ago, I would really like to spare myself a repeat of that agony.

So, here is my plea: Is there anyone who would like to volunteer to come spend a week in the Big Apple in January? You won't get to see much of the city since you'll be feeding me, doing my laundry and generally being my bed-nurse . . . but if you'd be kind enough to come help me with my recovery, I will promise to take long, drug enduced naps each and every afternoon, giving you the opportunity to take in a Broadway show, tour the MOMA, take photos from the top of the Empire State Building or to see any other sites that you've never had the chance to discover.

Sure, it'll be winter, but not to worry; we don't really get much snow and there are plenty of indoor activities to enjoy! Besides, for those of you that are unemployed (or have an open calendar), when else are you going to have the opportunity to pick up and jet to the NYC? Volunteers welcome!

Crippling News

After nearly a full year of walking in pain along the streets of New York City; countless doctor's appointments; several MRIs, x-rays, and neurological tests trying to find the source of my pain, I finally met with a surgeon who today told me that he needs to completely "rebuild" my left foot and ankle.

I was prepared for the news that surgery was inevitable, but I was not ready to hear the extensive details of how he will have to break my foot, cut my achille's tendon, and re-anchor the tendons and ligaments on the exterior of my ankle. Getting the play-by-play, I nearly "lost it" in his office and I am definitely losing it now as I write this post.

I'm a cripple (for lack of a better term, really). Many of you have at least one, if not many, memories--I am sure--of me falling, tripping, or tumbling down stairs, slippery floors, or incredibly something as simple as my own two feet (yes, it's possible and I do it a lot, folks). And, after years of broken bones, sprains, and more, Dr. Weinfeld has finally confirmed what a few of New York's finest physician's have suspected for the last year--I am genetically pre-disposed to being "accident-prone." It seems funny, but only because I am making my best attempt at finding this diagnosis humorous right now . . .

Charcot-Marie-Tooth Syndrome is a hereditary neurological disorder that causes shortened calf muscles, extremely high arched feet, and weak ankles. The root of all these side effects is a syndrome that will slowly over the course of my life kill the nerve endings in my hands and feet, which will eventually atrophy all the muscles in my extremities. Much like muscular dystrophy, I will progressively lose most muscle strength in my feet and/or hands over my lifetime. . . The surgery that Dr. Weinfeld wants to perform will likely be the first of many that I will have to endure for years to come in order to maintain full use of my feet.

I am incredibly terrified, but at the same time calmed that I have found a surgeon that is so well-versed in this condition and is confident that I am going to recover well from the surgery. But, I can't help thinking what does this diagnosis mean for me and the rest of my life? What does this mean for the opportunity to have children some day? (I can't help thinking now that it's probably a blessing in disguise that I never married and had children in my 20s . . . )

Now, what to do? When to schedule my surgery? Should I do it now in the hopes that I will be in a walking boot in time to travel for the holidays? Or, do I wait until January when the officework is a little slower, but snow is on the ground and I am stumbling with crutches to get into a cab every morning to get to work ? How will I take care of myself in my little studio apartment; in this big city without a car? I really am losing it . . .