Professionals

Now that we are going to MSKCC, I have to get authorizations on my own, so I have asked my former (although he doesn't know it yet) doctor's nurse to get an approval for another MRI, since I know Dr. Healey will want to do one when I see him on Wednesday. That might save me a little trouble. I've also asked for a prescription for some type of pain reliever, as I am experiencing shooting pains up my leg and down my foot. I think it's a result of nerves reforming or doing something following the surgery. During the day it's tolerable, but it keeps me up at night (2-1/2 hours last night).

Dr. Keohan's office just called to inform me I have a follow-up appointment scheduled for Friday at 8:45. This is a total shock to us, as I have had to call my former doctor to schedule follow-ups and had to wait two to three weeks for an appointment. As Ed commented, this is what happens when you deal with professionals.

Finally, thanks for all the messages of encouragement and for the telephone calls. Lydia and Wilfredo, I had to delete and repost that Santorini photo, which is why it now chronologically appears after your note. I thought folks might find that a little confusing. :) That photo brings back great memories, doesn't it?

Santorini ~ June 2005 

First Visit at MSKCC - 1/27/06

Yesterday afternoon, we had our first appointment at Memorial Sloan Kettering Cancer Center (MSKCC). The first thing that struck us was the decor. Light woods and soothing colors were everywhere, and everything is computerized, including most of the documents I had to sign. In the waiting area for Dr. Keohan, there was a large water wall that trickled into a shallow pool of grey and black stones. There is always free juice, water, tea, coffee, hot chocolate and snacks available, and comfortable chairs and sofas in leather or upholstery were set up in small groups throughout the huge waiting room. An entire floor of the building is devoted to radiology. And that was an outpatient building. I can't imagine what the hospital will look like. Having been to local hospitals and doctors' offices, this was - obviously - like nothing we've seen before, and we consider ourselves somewhat sophisticated. :)

I was first seen by Dr. Keohan's assistant, who reviewed the history of my ankle problems and took a thorough medical history. He had reviewed all of my scans and reports (a first!) and then left to discuss what he had learned with Dr. Keohan. She first assumed, as her assistant did, that the tumor had begun in the muscle outside of my bone and worked its way in, but upon examining me, realized that the tumor appears to be completely within the bone. She described this to us as "extremely, extremely rare." She told us that this is the only tumor (yay!), and the two areas of possible concern in my pelvis were nothing to worry about. She was certain that at my appointment with Dr. Healey on Wednesday, he will recommend resection -- removing a portion of my fibula. She will discuss his findings with him following my appointment, and they will develop a treatment plan. FINALLY!! We have been waiting since September to find out what I had, then what to do about it, and then when, and we've finally reached the "what" and "when" part. That's such a relief.

If someone had told me even six months ago that I would be pleased to learn that I had a rare malignant tumor located in my ankle bone and part of that bone would have to be removed, I would have thought she/he were crazy. What a difference some time and perspective makes. While I wish I didn't have this cancer at all, I'm very lucky:

1. It appears to be confined to the bone, making it easier to remove with clean, wide margins.
2. It's my primary tumor, not a metastasis.
3. I have no known metastases so despite this long journey, no new tumors have grown.
4. I have easy access to one of the best cancer centers in the world.
5. I have a terrific boss, who is emotionally supportive, completely positive I will beat this, and understanding about all my tests and appointments.
6. My insurance plan provides out-of-network benefits, which helps ease the financial burden a bit.
7. Most importantly, I have an excellent support system of family and friends. Ed and my mom are my two biggest cheerleaders, and I know my dad is watching over me (I could really use one of his hugs right now). Without all of you, I would not be as confident as I am that I will win this fight.

I will update this after my appointment with Dr. Healey. In the meantime, thanks for all your calls and e-mails. Keep thinking those positive thoughts!

Introduction

I've created this blog to give my family and friends a central location to go to for the latest news on my fight against leiomyosarcoma.

First, a history so everyone is up to speed:

In the summer of 2004, I was experiencing some discomfort in my left ankle. Sometimes it would be slightly swollen and other times not, but it was frequently sensitive to touch. Pressing on it didn't create much pain, but a blanket passing over my ankle might make me gasp. I visited my physician, who thought I might have gout (an inflammation of the joints, usually with an excessive amount of uric acid in the blood) and sent me for bloodwork. My uric acid levels were on the low end of normal, so gout was out. However, neither of us followed up.

In July 2005, my ankle began bothering me almost daily. By August it was swollen constantly, so in September, I went back to see my doctor. He ordered an x-ray and told me to find a podiatrist. It was his impression that the problem was mechanical, i.e., a cartilage or ligament issue. When I first saw the podiatrist, I didn't have my x-ray films or the radiologist's report, and he diagnosed me with a possible cartilage problem between the bottom of my fibula and the bone in my foot. Once he saw the x-rays, however, he realized there was more testing to be done.

In October, I had an MRI of my fibula (see http://www.bartleby.com/107/illus258.html for an illustration of the leg bones), as the x-ray had shown a possible infection or cyst in my ankle bone (left distal fibula). The MRI showed an unidentified lesion, and the radiologist recommended a bone biopsy. The podiatrist referred me to an orthopaedic oncologist and ordered a whole body bone scan.

In November, I met with an orthopaedic oncologist at NYU Medical Center. He sent me for a CT scan of my ankle, which was inconclusive. That radiologist also recommended a bone biopsy.

On December 7, I had an open bone biopsy performed at the Hospital for Joint Diseases as an outpatient. The surgery went well, and I was sent home in a partial cast from my toes to just below my knee. On December 19, the surgeon informed us that I had leiomyosarcoma (LMS), a rare soft tissue cancer that affects 1 in 250,000 people (see www.leiomyosarcoma.info for much more information) and represents about 1% of all cancers. Since the diagnosis, I've had a CT scan of my chest, abdomen and pelvis, a whole body PET scan, a brain MRI, and an ultrasound to search for a primary tumor or metastases.

I can report with certainty that my brain, lungs, uterus, major organs, and bones (other than my fibula) are free of tumors. There are a few areas of concern in my soft tissues within my pelvis that will likely be investigated further. It seems, therefore, that I fall into an even more rare subset of those with LMS: a bone primary. Usually, the primary tumor is located somewhere in the soft tissue of the trunk (lungs, uterus, liver, etc.) and may metastasize to the bone.

On Friday, Jan. 27, Ed and I are meeting with a medical oncologist at Memorial Sloan Kettering Cancer Center in New York City. MSKCC is the largest and most well-known cancer center in the United States and its doctors come highly recommended. Our goal is not only to confirm my diagnosis, but to discuss further tests, treatment options, prognosis, etc. On Feb. 1, we will have our first appointment with Dr. John Healey, a well-known orthopaedic oncologist, to discuss the probable removal of a portion of my fibula. The removal of the tumor with clear, wide margins is the recommended treatment for this cancer. In my case, I'm lucky that tumor is within the bone and should be able to be removed completely and cleanly. (For an interesting article on Dr. Healey from New York Magazine, see http://www.newyorkmetro.com/nymetro/health/bestdoctors/2005/11959/ )

I will update this blog regularly with comments on my appointments and results of any tests. Feel free to write me here or at my usual e-mail address.