Friday, December 18, 2009
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.
Friday, December 4, 2009
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 . . .
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 . . .
Tuesday, November 24, 2009
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?
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?
Sunday, November 15, 2009
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!
Wednesday, October 14, 2009
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?
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?
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