Another anniversary

It was one year ago that "Dr. Dolittle," as we christened him, told me I had leiomyosarcoma. I remember being a bit anxious prior to my appointment, because I had asked him to contact me at some point between my biopsy (December 7) and my appointment if the news was not good. Several of my closest friends and I debated whether not hearing from him meant it was good news or that he had simply not contacted me -- either because he forgot or because he didn't wish to do so. I believe now that it was the latter. He didn't want to prepare me, so he ignored my request and decided to dump it on us in the office. At least he had some print-outs about LMS from the internet (which he admit he hadn't read) to give me. He didn't realize that what I learned from those papers would make me smart enough to fire him less than a month later.

So what seemed to be a nightmare actually became one. I don't remember much: He said the tumor in my ankle may not be the primary, but I didn't really understand the significance of that. (Ed and I had never dealt with cancer before, so we didn't comprehend that this would mean the ankle tumor was a metastases, placing me directly at stage IV.) I remember thinking, "Well, merry Christmas to me!" I don't remember his resident removing my cast, but I do remember him struggling to remove the stitches. The rest of the day I was in a fog. I remember talking to my mom, but not what I said. I don't remember who I called, when I called them, or what I said.

It's interesting where things lead. Leiomyosarcoma.info taught me just about everything I needed to learn about LMS (sometimes too much) and as a result, I joined a message board for people with LMS, their families and their caregivers. Through that board, I met Ben, who pointed me to Dr. Healey, who removed my tumor and gave me a new shot at enjoying a long life. I've lost Ben since then, but I've gained a lot, too.

In the past year, I've learned I'm tougher than I thought and that ignoring something will not make it go away. I learned that I have to take control of my healthcare, because no one else will. I know that some people disappear when the chips are down, but many others rise to the occasion and hang in there for the long term. I realize it's important to ask for help when you need it. I need to live the rest of my life, regardless of its length, with purpose, happiness, love, forgiveness, peace, and kindness. I'm still working on that last part, especially the purpose and forgiveness stuff, but perhaps I'm making more progress than I would have had this not happened to me.

I am grateful to everyone who has repeatedly offered me the most precious gifts any human can offer another: her/his time, love, patience, and understanding. I thank you from every corner of my heart.

A "relatively" good scan

Those were Dr. Keohan's words when she began her report, and I immediately thought, "Oh no." According to the radiologist, there is a new 3 x 4 mm nodule in my upper right lung and the two existing nodules (in the middle and lower portions of the same lung) have grown by 1 mm in each direction. I don't know what happened to the "ill-defined 2-3 mm nodular density" reported in the upper right lobe last time, and since I didn't have a copy of the report with me, I couldn't go into it in further detail. It's possible the "new" nodule is an inflamation, but the radiologist could not rule out metastases because of my history. Since the largest is too small to even biopsy (slightly larger than 1/8"), we will wait another three months and scan again. At that point, I will attempt to find out whether the "new" one is actually the prior one.

The good news is my liver cysts (if that's what they are) are stable, and nothing else showed up on the scan in my chest, abdomen or pelvis. So I suppose "relatively" good was the correct term. I continue to officially be NED. Yay!

When I reported all this to my mom, she wanted to know what the doctor was going to do. I explained to her that because the nodules are so small, there is nothing we can do but wait. As a mom, she wants the doctor to go after whatever it is and get rid of it immediately, much as I thought using chemo as a preventative step might be a good idea after my surgery. Since this can be a murky area, I thought I would explain the rationale here.

At this time, there is no proven chemotherapy regimen for LMS, and everyone being treated with chemo is essentially or literally participating in a clinical trial. If one is NED or has nodules as I do that are impossible to define, the doctor would be putting poison in my system in the hope that it might eliminate something that we can't see, shrink or destroy something that may not be cancer, or try to prevent metastases. Since some chemo agents have a lifetime limit, she would be taking a chance that should I need those agents in the future against proven metastases, my dosage would be limited. So, I've put my trust in her to present me with the facts and her recommendations, and we go from there. At this point, that means scan every three months.

I would have posted this report sooner, but this past weekend was so jam-packed that I never went near my computer, and this morning I was having problems getting onto this site. (One side note: do not install Internet Explorer 7 if you can avoid it. I had so many problems that I uninstalled it and went back to IE6, but I'm still dealing with a few leftover bugs.) I imagine the rest of you were busy as well, so perhaps you didn't have time to check this weekend and my explanation was unnecessary. LOL

As the clock ticks down to Christmas and New Year's Eve, I send you all my very best wishes for a happy and healthy 2007. As always, I very much appreciate your support, prayers, positive thoughts, and humor. I look forward to posting to this blog for many years to come. Perhaps some of you will still be interested in reading it. :)

One down, one to go

Saw Dr. Healey yesterday and he told me the same thing his letter (written because the time between my test and my appointment was about two weeks; very considerate) and the radiologist's report did: nothing to worry about. There is still extensive edema in my foot and he said I can hope for a one-third (maybe two-third) reduction, but my ankle area will not go back to "normal." I assured him I was comfortable with the notion that my foot modeling career was over. We discussed my ongoing heel discomfort and he basically said I would have to live with it. It has improved greatly over time, and I really just wanted assurance that there wasn't anything wrong. It's usually not even bothersome enough to require an ibuoprofen, and he suggested wearing an ace ankle bandage for additional support when I needed it. I bought new snow boots that are supposed to provide lots of traction and help me get through the winter. Ice is my nemesis!

I had my CT scans today and turned the films on CD over to Dr. Keohan's assistant immediately afterward. Last time I saw Dr. K, she had the radiologist's report but hadn't seen the films. Now she will have both by the time I see her on Friday morning. The nurse had a heck of a time trying to find a vein today, which was not helped by the fact that I'm not allowed to drink anything four hours prior -- which for me would have been before 3:30 a.m. Between not enough water, being nervous about the needle, and the cold in the room, she actually used a heat pack on my hand to try to raise a vein. Thank goodness she was patient and didn't try stabbing around like some do. That's what gave me my fear of needles in the first place!

I hope everyone is prepared (or almost) for the upcoming holidays. Our decorations are up, the Christmas tree has been lit, and I've begun baking cookies -- just what our expanding waistlines don't need. If you are still shopping/baking/decorating/wrapping, good luck and remember to enjoy the process!

I'll be back after my appointment on Friday...

No scan

Just wanted to let you know that my scan prescription and authorizations were screwed up, so there will be no scans for me tomorrow. I have to get a copy of my prescription and get additional authorizations before I can reschedule the scans.

This just goes to prove how one must take control of one's healthcare and not leave any of the administrative details to others without following up. I give myself demerits for this.

I will post with the new date for the scans.

On a positive note, Dr. Healey sent me a letter regarding the report on my MRI, which showed no evidence of recurrence. I do have significant swelling in my foot, but I will discuss that with him further on Monday, Dec. 11.

We're Back!

We returned from our long-awaited Panama Canal cruise on the 19th, and we had a great time. We met some wonderful people (we're lucky that way) and had fairly good weather with calm seas. The full transit of the canal was interesting, although getting up before dawn to watch our entrance into the canal from the Pacific was not my idea of an appropriate vacation activity. It poured in Aruba as we arrived, ruining my second (and likely last) attempt to snorkel there. I think it's one of those things that's simply not meant to be.

I'm glad we didn't sail before now, as my ankle was often sore from the need to balance while walking. Had we gone earlier, I'm not sure I would have been up and around every day as I was on this cruise. Thank goodness the discomfort was bad enough only one day that I took some ibuprofen. Otherwise, I tried to rest it when I could and have determined that anything over a 2" heel is out for the foreseeable future.

I returned to work on Tuesday and had my 6-month MRI on Wednesday. The nurse who started the small, temporary line for the contrast material was great, and the test was completed without a hitch. My appointment with Dr. Healey was moved to the second week of December, so unless I get a report beforehand (and the radiologist will have NO idea what he's looking at) I won't have any understandable results until then. My next CT scan is the first week of December.

My mom joined us for Thanksgiving dinner and while we had a good time, it's still strange to celebrate anything without my dad. November 14 was the first anniversary of his death. As that was the day we sailed through the Canal, we kept a low profile that day. I find it difficult to comprehend that it's been a year, and it's been some year -- not one that makes my top 10 list, that's for certain. On the other hand, mom is still in good health and I'm still "movin' and groovin'," and there's something to be said for that.

Happy belated Thanksgiving to one and all. I'll be back with my CT scan results in a few weeks.

(not much of an) Update

Nothing new, but that's something to report, I suppose. I've contacted my doctors' offices to get authorizations for my upcoming scans, so those are less than 45 days away (the time limit for my insurance company).

We are preparing for our upcoming cruise through the Panama Canal. I've "met" a delightful group of people online, so it will be fun to meet them in person and spend some time with them. The weather is still hot on the Mexican Riviera and in Panama, so we'll have an opportunity to wear our shorts a few more times this year.

I'm back to work in the city now that my boss is back from Montana and I'm wearing real shoes today. My foot is not too certain what to do with this 2" heel (it's a chunky one), but I'm doing okay so far. It will be good practice for wearing some heels on the cruise, although the days of my 3-1/2" stilettos are definitely over.

I've been keeping busy. My new hobby is jewelry making. I've been creating necklaces and earrings with beads of all types and sizes. It's a lot of fun and though less expensive than buying jewelry, it's definitely not a cheap hobby.

That's all for now. I'll post again after our cruise. Happy Halloween!

The top photo is one of Ben in 2001 before he was diagnosed with LMS.

The bottom photo was taken in April this year. I wish I had one of him wearing his floppy fishing hat, which is what he had on in early February when we met. Apparently he had quite a collection of them.

A big loss

I found out today that yesterday morning, "my buddy Ben," as I referred to him, died of complications related to Leiomyosarcoma. Ben was the first person to e-mail me after I joined an online message group for patients with LMS, as well as their partners and caregivers. Ben was another of the rare bone primaries (his was in his femur), but by the time the tumor was discovered when he was 39 years old, it had already metasized to his lungs. Ben spent four years trying different types of chemotherapy agents and surviving multiple surgeries, and spent the last few months in and out of the hospital with reduced oxygen saturation and lung capacity. He was on a respirator for a few days and had been in a rehabilitation facility trying to get his strength up enough to go back home. Unfortunately, he became weaker instead and died in the hospital.

Ben is the person who directed me to Dr. Healey for my surgery and first recommended Dr. Keohan to me. He came to visit me the day after my surgery, and entertained Ed and me for almost an hour with stories of his life. He was witty, highly intelligent, compassionate, and a wonderful friend and mentor to me. My heart is heavy and I will greatly miss a man I met only once and knew mainly through e-mails.

I had promised him that once I got back on my feet, we would meet in the city and take him to dinner (he lived on Long Island), but we never did. He was in the hospital or I was working from home or away on vacation, and I didn't take the time to firm up a date, although we discussed it a few times. I learned a hard lesson today: Sometimes things aren't convenient but if they are important, they need to be done, and done quickly. I lost an opportunity to spend some time with someone who made time for me. I don't plan to let that happen again, and I hope you don't either.

Follow-up

Promised I'd post after my appointment with Dr. Healey. After a 2 hour and 15 minute wait, we reviewed my x-rays and progress, and he remains very pleased both with his work and my progress. While he believes my left ankle is now more stable than my right, he advised me not to go crazy. What, me? Crazy? No way! My next appointment is in early December following another MRI. I guess he plans to do MRIs every six months for the foreseeable future to check for local recurrence.

I continue with my physical therapy and have been going three times a week (except for last week since we were in Las Vegas). I want to make certain that ankle is in great shape prior to winter. I think my legs are in better shape now than they have ever been. Those who have known me for a while know I'm not an exercise or athletic person, so this routine is unusual for me. Let's see how long it lasts...

Happy autumn a few days early. What happened to summer???

I thought I put this in this blog somewhere, but NED means no evidence of disease. I first saw that term on the LMS message board I belong to and it took me a few weeks to figure it out. Sorry if I failed to explain it previously.

No news to report. We had a good time in Las Vegas. My follow-up with the surgeon is on Monday the 18th, so I'll post an update at that time.

Still NED!

My CT scans were done yesterday morning and I saw Dr. Keohan yesterday afternoon. The liver hypodensity appears to be a cyst, and there may be two other cysts in the liver, but she remains unconcerned and said liver cysts are common. She will keep an eye on three 2-3mm "nodules" seen in my right lung -- one at the top, one in the middle and one at the bottom. They are extremely small and didn't change in appearance when the contrast material was injected (nor did the liver hypodensity). They were not noted on previous CT scan reports, but she will check the films. As far as she is concerned, I remain NED and don't need to return for another three months. My next scans are scheduled for the beginning of December.

I have a follow-up with Dr. Healey next month, so I'll be back soon.

:)

It's been a while...

I apologize for not updating this blog sooner.

It's been a relatively quiet summer. Our friends from Michigan came out to stay over July 4th weekend, and we've had days by the pool with friends from closer to home. I worked at home from June 20 through last Thursday, coming in every week or so to go through the mail and get the bills paid. My mom stayed with us several times, usually spending four days at a time. Consequently, I am familiar with some of the Yankee players now -- not by choice, but she's a big fan. I got some reading in, making decent use of our local library, and Ed and I tried to take advantage of our new Netflix membership. We've seen some very good movies ("Hotel Rwanda," "Crash"), some good movies ("Hustle & Flow," "Transamerica"), a couple so-so ("Inside Man," "The 40-Year-Old Virgin"), and one true clunker ("Four Brothers"). I think we're getting our money's worth, but we'll have to see how often we watch movies once I'm working consistent five-day weeks.

My insurance company finally cut off my physical therapy visits, so while I'm composing my first appeal letter, I've joined the facility's wellness program. (It turns out you can't actually appeal until you've been officially denied. A reduction in the number of visits does not constitute a denial.) Essentially, my physical therapist put together a list of exercises for me to perform, and for $10 per week, I can work out as many times as I want using their equipment. I just started it last week, and I'm going to try to get there at least twice a week. I have been using the treadmill at home as well as there, and I'm pleased to say I'm up to 15 minutes at a top speed of 3.0 mph. That's pretty far from my pre-biopsy days when I walked 30-45 minutes at a time at a top speed of 3.6 mph, but considering I was on crutches back in March, 15 minutes ain't too shabby.

We are headed off to Las Vegas soon for five days and we are looking forward to that. We haven't been there in quite a few years, and we enjoy hanging out by the hotel pool in the morning and then wandering around the casinos between lunch and dinner. Dinner is always a tough time, because there are so many restaurants (reasonably priced) that we enjoy. We plan to go to one Cirque du Soleil show so far, and we'll see what catches our interest for the rest of the time. I know one evening will be spent on the patio of the Fountain Bar at the Bellagio, watching the fountains dance to the music every 15 minutes. What a beautiful sight that is!

It's hard to believe three months have passed, but my next CT scans are next Tuesday, the 29th. I'm having them done in NYC at a facility Dr. Keohan apparently likes (she didn't like the quality of the scans from Jersey Shore). I was originally scheduled to have them done at MSKCC, but her office moved them to a nearby Oxford-affiliated facility. I have to drink that contrast stuff at 8 a.m. and I'll be scanned at 9 a.m. In addition to the regular chest/abdomen/pelvis scans, she's also ordered a special scan of my liver to see more clearly a hypodensity that appeared last time. She says it's nothing to worry about, but she just wants a better view of it. I'll get the results from her during an appointment later that day. No more waiting five days for the results.

My next appointment with Dr. Healey is in mid-September, and I think he'll be pleased with my progress. The hitch in my step is gone, although when my foot is painful I still tend to lock up my hip and knee. Yesterday was the only day since my surgery when I almost didn't feel as if I had had surgery at all. Today, I'm back to minimal awareness that all is not "right" but I'm hoping for more of those "normal" days as time goes by.

I'll try to remember to post here more often, perhaps even once a week to say there isn't anything new. I appreciate how many of you are still following this blog -- I didn't think it would be quite as popular as it has turned out to be.

Enjoy the rest of your summer and I'll definitely be back after my scan results next week.

May 2006

Sorry...

I've been duly reminded that my update is long overdue. My appointment with Dr. Healey went well. I no longer have to wear the aircast unless I'm going to be walking on uneven ground. That means that I have to wear it to work, of course, since New York sidewalks and streets are more uneven than our yard. He gave me a new prescription for another six months of physical therapy, working mainly on the side of my foot and leg and relearning balance (not that my balance was that terrific previously). Until I build up some of those muscles, I will continue to wear the aircast when I go out. It looks lovely with shorts, as the photo above shows. A new fashion trend, I'm sure. And in case you're wondering, I'm picking shells on the beach on Sanibel Island.

I'm now in a fight with Orthonet, the company that authorizes my PT visits, since they seem intent on approving 4-6 visits at a time rather than, say, 10 or 12. I plan to compose an appeal letter within the next week to fight for longer authorizations. Otherwise, the therapist has to waste 20-30 minutes every four visits measuring the angles of my foot and writing up a progress report, which only lands us another four visits. What a scam! I can understand not wanting to approve more visits than are necessary for a sprained ankle, but I think I qualify for a little more leeway than that. Wish me luck!

Otherwise, things are getting back to normal around here. My boss is off to his Montana ranch for the summer so I began working from home on Tuesday. I'll be going into the city every 7-10 days to pick up the mail and pay the bills. My mom is coming to stay with us for a few days next week, and our friends from Michigan will be coming out over the July 4th extended weekend. I've been doing some long overdue spring cleaning, like washing windows, vacuuming behind the furniture, cleaning the fan blades, etc. We are going to attempt to turn over the mattress today -- that should be interesting since it was difficult for the two of us to move it when I had two good ankles!

My next CT scans are at the end of August and will be performed at MSKCC so Dr. Keohan can have the 3 phase liver scan performed at the same time, and I will see her later than day for a report. My next visit with Dr. Healey isn't until mid-September. If anything comes up in the meantime, I'll post it here.

Happy first full day of summer to all. I hope your summer is filled with fun, laughter, barbeques, lazy days and nights, and enjoyment in whatever form you seek it.

Visit Update

Saw Dr. Keohan on Tuesday and she agreed that my scans look clear. She did request that my August scans be performed at MSKCC because she wants a better picture of the hypodensity in my liver. She said she did not find it suspicious but wanted to be able to see it better, so she's ordering an extra scan of the liver. From what I've been told, the barium solution there is more like raspberry Crystal Light, which would be a HUGE improvement over the "berry smoothie" solution Jersey Shore uses.

I see Dr. Healey on Monday for a follow up. I think he will keep me in the AirCast for another 6-8 weeks, especially since I haven't done any eversion/inversion work on my foot with weight. I've been moving my foot around on a little wobbleboard while I'm sitting, but to really reteach the muscles to support my ankle, I need to be standing on the board. I don't know how much I'm looking forward to that, but I will be glad when I can stop wearing the AirCast -- especially now that the warmer weather has arrived.

Will post another update next week!

NED!!!!!

My 5/19 CT scan reports are back and as far as we can tell, there is no evidence of disease!!!! YAY!!!! The report indicates there is a "small, sub-centimeter hypodensity" in the "central aspect of the liver near the portal vein" which is "somewhat less prominent." As far as I can determine, this means there is an extremely small spot in my liver that appeared on the last scans, has shrunk a bit, and caused no alarm in December so should cause no alarm this time. I'll keep you posted should Dr. Keohan disagree with my assessment.

I had a physical therapy evaulation last night before they apply for 16 more visits. I reached most of my short-term goals but not all of them. It seems I need to work a bit harder to get more bend in my ankle, especially to help me go down stairs more normally. Otherwise, my progress continues and I even did some weeding over the weekend. I know, it's not the most exciting thing to report, but when you think about how you have to move your feet and bend when you're weeding in and around plants, trees and ponds, it's somewhat impressive (pausing to pat myself lightly on the back). I have a feeling my foot and ankle (such as it is) will be tender tomorrow since I've been working that joint harder than usual today.

Thanks for continuing to keep track of my progress and keep your fingers crossed for many more years of clear scans. The next one will be in August.

We're back!

We returned Saturday from our whirlwind tour of Florida. We visited cruise friends in Tallahassee (hi Chris and Ian!), Boynton Beach (warmest greetings to Joan and Ed), and Bradenton (hello Anne and Andy!) in addition to spending one night in Orlando and three nights on Sanibel Island. The weather was fabulous (upper 80s and low 90s with only one morning of rain), the company was excellent, and the driving was easy. It's hard to believe it's over already, but I've got a platter of sea shells on the dining room table and lots of wonderful memories. Thanks to everyone for their hospitality.

On the physical front, I'm making great progress. Even my physical therapist was impressed! I've started on the wobble board, which allows me to move my foot from side to side (eversion and inversion) and around in a circle (a very sloppy circle at the moment). I can hear the muscles in the sides of my foot saying, "Uh, we're not used to this and we're not sure we're happy about it." It's a strange feeling to use those muscles, but it doesn't hurt. My foot was a little tender this morning (two days of the wobble board so far this week) and we'll have to see how it is tomorrow after another session tonight. I'm walking more normally and at a faster pace, although I can only pass people with canes at this point.

Friday morning is my first follow-up CT scan and I'm a bit nervous. First, drinking the barium is gross (not the flavor but the texture) and second, getting stuck with a needle is not my idea of a good time. Third, I'll have to wait until next week to get the results, and I hope I'm able to sleep. I've been having a terrible time getting to sleep this week and as a result, I'm just plain exhausted. I'll be glad when the test is over and the results are in. At least the wondering will be over.

That's about it from here. Keep your fingers crossed for clear scans, and I'll post an update after my follow-up visit with Dr. Keohan on May 30.

I've been remiss: an update

Started physical therapy on April 18, three times a week (only approved for seven sessions so far). It started off easy, but by the second session the therapist was stretching and pulling and pushing so much I was actually pounding the table. Youch! The good part is that there is no pain afterward, although my ankle -- especially my heel -- becomes quite sore during the night. I've been taking some ibuprofen on PT nights, but the heel thing can only be relieved by stretching -- not something I particularly want to lay in bed and do at 2 a.m. Nevertheless, there has been some progress. I've lost most of my lurch and I'm trying to correct a weird lean to the left. I'll never be an Olympic athlete, but then again, I was a long way from that before all this happened. I don't start working my foot side to side until later in May, and it will be interesting to see how that feels. I have five more sessions to be approved on this prescription and Dr. Healey wrote a prescription for another two months of bi-weekly sessions.

My four-week follow-up with Dr. Healey was on Monday, and he said everything looks good. I'm permanently done with the Herman Munster boot, can now get my incision wet (although I still can't soak my foot), and no longer have to wear the aircast to bed. I'll be wearing the aircast when I'm up and about for at least another six weeks, although I don't wear it when I'm at PT. I gave him the CD of my MRI, and he said he didn't expect to see anything on the films. I assume he'll call me if he finds anything.

I made it into the city four days in a row this week. It's a record since the end of January. I think four days was actually too much, as I am physically exhausted and my foot is not too happy with me during the day either. It's amazing how quickly I lost my energy and how long it's taking for it to return.

Next up is our trip to Florida. Hurray! I haven't thought of what to pack (one of each shoe, perhaps), but we plan to spend most of our time in shorts or bathing suits. Unfortunately, I have to wear the aircast on the beach and I need to keep my incision out of the sun, but it will be relaxing nonetheless and great to see our many Florida-based cruise friends. We'll be visiting Tallahassee, Orlando, Boynton Beach, Sanibel Island and Bradenton in a whirlwind 10-day trip. (Not looking forward to the price of gas is in Florida.) It will be so wonderful to relax and not worry about tests, appointments or PT. It's been a while since we had a real vacation (can't count the Thanksgiving cruise since it immediately followed Dad's funeral) and being home certainly wasn't a vacation. Keep your fingers crossed for sunshine and gentle breezes.

All I want for my birthday...

Today is my 44th birthday, and Ed's been bugging me for a few months about what I wanted. This year what I really want is what no one can give me: to be cancer free for the rest of my life and to have another day to spend with my dad. This is my first birthday that Dad hasn't been here to wish me another happy year and, since I stopped living at home, sing "Happy Birthday" over the phone with Mom. Last year, he and Mom surprised me by arriving for dinner -- a little scheme cooked up with Ed. I didn't know then that it would be the last of my birthdays that we would spend together, but I remember that we decided to order in Chinese food, and Dad cleaned his plate, as usual.

This Friday would have been Dad's 75th birthday. I don't remember what we did for his birthday last year, but I know we called and sang to him, because that's a family tradition. So this year, on my birthday, I want to tell my dad how much I wish I could share one more hug and hear one more "daughter dear." And to say that I wish I had kept a recording of one of his birthday songs so I could listen to it today. I miss you, Daddy. Happy birthday.

Physical Therapy

Yesterday I went for my physical therapy evaluation. I was poked, prodded, and measured every which way, and the therapist filled out pages of paperwork. Once they receive approval from Oxford with the number of visits I'm allowed, we can begin. In the meantime, I have seven exercises to perform at home twice a day, plus he approved the two exercises I was performing on our weight machines. Put the kabosh on walks on the treadmill for the near future, though, but I can walk around the neighborhood. Unfortunately, that's still in the dreaded Herman Munster boot unless I can convince Dr. Healey via phone to let me wear the aircast locally.

I made it into the office twice this week via bus and subway. Ed was not thrilled about letting me go off on my own, but it helped my confidence immeasurably to accomplish it. Monday night, I was exhausted, my foot was swollen, and I slept for 10 hours. Thursday night, I was tired, my foot was a bit less swollen and I slept for 9 hours. I think the two days' rest in between trips really helped, and since I'm working from home this coming week, I'll have more of a chance to work on my exercises and build up my stamina.

Every week I'm getting a little stronger and a little more confident in my ability eventually to "ambulate normally," as I like to say. One of these days, I may lose my "Gimpy" designation!

"The Cast"

Here I am returning from an afternoon stroll in my Herman Munster boot. (Yes, those are pj bottoms!) The weather has been beautiful the past few days, and being outside has been a pleasure even if the walk is less so. I'm going into the office on Monday via bus for a full day, so I'm trying to build up my stamina. I hope to cover some more ground over the next few days.

My appointment with Dr. Healey went well, when we finally saw him. He was running four hours behind, and when we left at 9:15 p.m., he still had 10 patients to see. Despite his overcrowded schedule, he continued to give us all the time we needed and answered all of my questions.

I will have to wear this lovely cast for the next four weeks whenever I go out, but around the house and at night, I have an aircast that runs under my heel and up each side of my ankle. I have to wear it with a sneaker or lace-up shoe, and currently I'm sporting one of Ed's size 10 sneakers. Tonight we are headed out to try to find a pair of women's sneakers that will fit over my swollen foot, which I will donate once my foot fits in my regular sneaker. (Any bets on when that will be?!) I can get around in the aircast, although I'm walking quite flat-footed. It's going to take some work to get my foot to flex properly, and I'm sure it's not going to happen without some discomfort. It is a joy to get that cast off my leg, though. I was even able to weigh myself this morning!

I go back to see Dr. Healey in a month and have an MRI done on my ankle prior to my appointment. He indicated that with all the swelling, it may be difficult to see exactly what's going on in there, but it will provide a baseline for future scans. The chance of a new tumor occuring in my knee, hip or bone in my leg is slim, according to him, but there is always the chance of a tumor recurring near where the original tumor was removed. We will have to keep on top of it with periodic scans.

In the meantime, I'll keep working toward walking like I used to do. I've been very lucky so far to experience little discomfort. Ibuprofen and a good night's sleep seem to do away with the aches and pains. I hope that continues. I'm really looking forward to taking a walk on a Florida beach.

I'm walking. Yes indeed, I'm walking...

Finally, I am up and about. Boy, it feels good to walk with just my cane, although I get worn out easily and need to build up my stamina. I've been walking non-stop since Sunday, and today I took my first walk up and down our block. Of course, I spent the entire walk looking at the sidewalk for branches, uneven concrete, stones, etc. and didn't see much of the neighborhood, but at least I got out. With it being about 42 degrees and breezy, it wasn't the best day for a stroll, but I needed to do more than simply walk around in circles on the first floor of the house.

Each new thing I attempt is scary, but eventually I get used to it. Being a pain weenie doesn't help, because I try to avoid anything that may hurt. My upper chest and upper back were really painful for several days because I was tensing up each time I took a step, anticipating pain. That has improved now that my foot has become used to the clumping around. Did I mention I'm not remotely graceful??

I owe all of my progress to Ed, my personal trainer. He's had me walk on the treadmill (I'm up to five minutes), work out on our weight machines, and walk up and down the stairs. Going up isn't too difficult, but I can't bend my left leg enough to walk down normally. If I'm still wearing this cast when I go back to work, that's going to mean a long trip, one stair at a time, down to the subway.

Monday afternoon is my follow up with Dr. Healey. Originally I hated this walking cast, but I've grown attached to it and can't imagine what it would be like if he took it away and replaced it with...nothing. I'll have to learn to walk all over again, because right now my foot doesn't move in the cast, and when I attempt to flex it when the cast is off (don't tell him I actually do take it off), it moves about half an inch up or down. Not exactly conducive to normal walking! I'll post an update here after the visit.

Our plans for a vacation have firmed up. We are going to take a trip to Florida, visit some cruise friends and spend a few days at the beach. After this ordeal, we could really use some time to simply relax, enjoy each other, and see other people. Each day at home seems to present a new challenge, and it certainly has not been a vacation! In the past six weeks, I've been out to restaurants four times and been in a friend or relative's home three times. I haven't been to a store, driven a car, seen a movie, or participated in an activity since I've been home. Thank goodness my mom has come to stay with us a few times. It gives Ed a break and gives me someone new to talk to face to face. On the other hand, I haven't cleaned or cooked a meal since my surgery, so there are a few positives!!

What has been great is keeping in touch with many of our friends via telephone and e-mail. It makes this retreat from the real world a little easier to take. Thanks for your continued support and for keeping in touch. I appreciate it more than you know.

Still Hobbling Along

I continue to recuperate at home, but haven't made much progress with walking. I have been putting some weight on my left foot as I use the crutches, and I am doing exercises for my thighs and knees. I can stand on my left foot for a few seconds, but I can't walk normally yet. I tried to take a normal step (rolling from heel through to the toe) the other day, and I could feel my foot protest loudly. I stayed off of it for two days and returned to exercising yesterday. Ed predicts that I will be walking with just a cane within 10 days, but I am not quite so confident. I'm trying to listen to my body rather than worry about the March 27 "deadline," but I feel as if I'm falling behind in my recovery. No sense in pushing it, though, as overdoing it could be a disaster.

I'm trying to imagine walking without this cast, and it actually makes my stomach clench. I wonder how long it will be before I stop worrying about twisting my ankle or walking wrong. I wish Dr. Healey had not told me the story of his patient who slipped on ice in her driveway eight years after having a similar operation and tore her tendon. I suppose once I'm up and around for a while, I'll stop obsessing about it.

Meanwhile, my mom has been staying with us the past few days to help out. It gives Ed a chance to get out, which he hasn't been doing since he didn't want to leave me alone. My good friend, Lydia, has been kind enough to "adult-sit" me at her home twice while Ed has run errands for a few hours, and Ed and I went out for dinner two weeks ago. Otherwise, I've been home, but haven't suffered from cabin fever yet. The next three days are supposed to be in the 60s, so I'll be soaking up some sun.

3/3 Follow-up

Hard to believe, but Dr. Keohan voted for no treatment. She told us she had given it a lot of thought and in the end decided that there is no proven benefit for me. Had my tumor been larger (10+ cm) or had it not been removed with clear margins, we would have been discussing treatment options, but as it stands, we're in scan and watch mode. I thought Ed was going to jump up and kiss her -- I even warned her to watch out -- and he's been grinning from ear to ear ever since. I'm still in shock, as I had made myself expect the worst. It will take a little while for the reality to set in.

I'll be having chest/abdomen/pelvis CT scans every three months with the reports and data on CD sent to her for review. My next appointment with her is at the end of May, so it looks like we might be able to take a little vacation. Hurray!!

Follow up - February 22

Sorry everyone, I know I’ve been remiss in updating you following my appointment on Wednesday. For those who sent me gentle reminders, thanks. Your e-mails have obviously gotten me back in gear!

My hard cast was removed and the stitches taken out. The incision is healing well, but it is long, about 10 inches according to Ed. It starts on the side of my foot about two inches from the bottom of my little toe and continues around my “ankle” and up my leg. According to the operative report, there was a defect on my talus (the bone that forms the ankle joint along with the fibula and tibia), so I believe Dr. Healey removed part of it. He also had to remove all of the tissue surrounding the biopsy site in one mass, so that partially accounts for the long incision. We didn’t get a copy of the report until the end of the appointment, so we couldn’t ask any questions about it. We’ll have a list for the next time, though.

Dr. Healey decided to move me into a walking cast rather than another plaster cast. I’m supposed to work up to walking on it over the next four weeks (my follow up is March 27), beginning with my current method of using two crutches and putting no weight on it, to putting a little weight on it, to using one crutch, to using a cane, to finally walking unassisted. I am taking it slow and will begin putting weight on it on Monday. Ed’s new name for me (the former being “Gimpy”) is Big Foot.

Dr. Healey then informed us that the pathology report indicated the tumor was high grade, not low to intermediate as previously determined. This means there is a much higher chance that the cancer will recur locally in the soft tissue of my lower leg or metastasize to another site. (LMS tumors generally have a 7.5% chance of local recurrence.) I have an appointment with Dr. Keohan for March 3 to discuss my treatment options. Dr. Healey recommended chemo, perhaps with radiation to the operative site, for several reasons, including my general good health and ability to tolerate chemo, and the possibility of preventing recurrence or metastases. The downside is that there is no proven chemotherapy for LMS, so prevention is not guaranteed. We’ll have to hear what Dr. Keohan recommends, but I was hoping to somehow avoid chemotherapy or at least have a choice, which now I don’t think I have. Despite the side effects and long-term damage of chemo and radiation, if I didn’t do the treatment I would regret it if I had a future recurrence. If I do the treatments and still have a recurrence, at least I’ll know I tried to prevent it.

On a positive note, there was no indication of cancer in the remaining tissue, so Dr. Healey definitely removed the bone and surrounding tissue with clear margins (the tumor had broken through the bone and was in the surrounding soft tissue). I am currently in surgical remission.

My philosophy at this point is this: Life is a crapshoot. Every decision I make may or may not be the “right” one, but I take a chance. Not all of my decisions have turned out well, while I have reaped the benefits of others for decades (and some of those were made without a lot of thoughtful consideration). You just don’t know what the long-term consequences of your choices will be, but sometimes you have to go with your gut in the face of the unknown. This is one of those times for me. With the support of my family and friends, I will get through this and hopefully reap the benefits for the rest of my loooooong life.

I am reminded of my favorite poem, which I’d like to share with you. It was written by Robert Frost in 1915 and is titled “The Road Not Taken”:

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth.

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same.

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I --
I took the one less traveled by,
And that has made all the difference.

Photos

This is a shot of me the day after surgery. My leg is up on three or four pillows, I have lines coming out of me in too many spots to mention, there's a massage cuff around my right leg to prevent clots, and I'm not feeling my best.

By the time Ed and my mom came in to see me on Thursday, I had my hard cast on, all my lines removed and I was moving around on my crutches. Part of my physical therapy was to spend some time sitting up in a chair -- with my leg still elevated -- so I'm following orders. Those hospital gowns are just the height of fashion, aren't they??!!

Recovery and other thoughts

It sure feels good to be home. I've been getting some solid sleep, usually four to five hours consecutively, totaling nine to 11 hours for the night. Although I miss being able to sleep on my left side (I can't put added pressure on the incision site), I can sleep for several hours on my right side once I get the pillows and my legs in the right position. I woke up Ed several times last night snoring, which is rare since I usually don't sleep on my back, but I have no choice for the time being. Since Spot isn't back home yet, Ed's been able to sleep in later so hopefully he's making up for the times I'm interrupting his sleep. I'm still not on pain medication, and I'm enjoying each day that I don't have to take any.

I had my first dream about cancer the other night. In short, I was at some event and made a negative comment about the economy in front of Laura Bush. A Bush spokeswoman responded that it was obviously my experience with cancer and its related medical costs that made me so negative. I asked how she knew I had cancer and why my privacy had been invaded, and then proceeded to lecture her on the sad state of the economy (high energy costs, huge trade deficit, job losses, etc.). I guess I've been watching the news a bit too much, and seeing Mrs. Bush at the Olympic opening ceremonies must have stuck in my brain. This isn't meant as a political statement; rather, it's interesting to me that I admitted to a stranger I had cancer -- a move forward in facing this disease despite it having taken place in a dream. I think accepting something subconsciously is a step in the right direction. I still haven't dreamt about the loss of my dad, so I obviously have other acceptance issues to deal with. One thing at a time, I guess.

We got socked with about 16" of snow over the weekend. Ed was out for several hours yesterday blowing and shoveling snow, and he's out there again now shoveling in the back and chipping away at the ice out front. It seems a shame to do all this work since it's supposed to reach 50 by week's end.

Meanwhile, I sit at the kitchen counter and spend hours on the computer. There is so much information that can be accessed through this thing, and I'm even able to do some work to help out at the office. It continually amazes me what I can learn through the web and how easy it is to connect with people all over the world, many of whom I will never even meet. The best part, though, is being able to keep you informed about my continued recovery, read your notes, and share e-mails with you. Maybe I'll post one of the photos Ed took of me post-surgery, if I can find one in which I don't look too bad. :)

Great surgery results...and I'm home!

I’m home and the surgery was a great success. I guess it will be easier to write this in chronological order rather than beginning with today and working backward, so here it goes.

Tuesday the 7th: We found out late Monday that my surgery was scheduled for 2:45 and I needed to be in the hospital by 12:45. We arrived early but it took us 30 minutes to get into the parking garage. Once I was registered and moved upstairs to the pre-surgical area, we waited about 30 minutes until we were taken into an area with a bed, where I got to put on one of those stunning gowns and a robe. At 2:30, we were told the OR was running behind and it would be another few hours before they could take me in. I was offered a shot of valium, which I refused (to my later detriment) because I wanted to stay awake with Ed until about an hour before surgery. We now think that delay thing was a ploy, because at 3 p.m. someone came from the OR to take me in.

My great state of denial failed me as soon as I got up on the operating table. First, my vein collapsed when they tried to start an IV in my arm. Then I started shaking and turned cold and clammy. The anesthesiologist suggested putting me under with gas and then they would run the IV line. I agreed and I would guess that it was about 30 seconds before I was out. Although I’m pleased that the doctor made that suggestion rather than having her assistant stick me again, I’m very sorry that the person in the pre-surgical area wasn’t more encouraging about the sedative. If he had prodded me just a little, I probably would have dealt with the needle for the few seconds it would have stung and been in much better shape.

I woke up in the recovery room around 9 p.m. sobbing in a combination of pain and the effects of the anesthesia. They hooked me up to a PCA pump, which fed me a constant drip of morphine plus allowed me to press a pump to give myself an extra hit of it if the drip wasn’t enough. I remember seeing Ed briefly around 10 and hearing him tell me he was going to go home, and the next thing I knew it was around 1 a.m. and they were taking me to my room.

Wednesday the 8th: Dr. Healey came in early in the morning to tell me that the surgery went very well (he told Ed Tuesday night that it went even better than he expected). I don’t have all the details yet, but I’ll be getting a copy of the operative report so I know what all he did. He removed 8 centimeters of my bone (about 3½ inches) so he got the tumor out with clean, wide margins (the original tumor was about 5 cm). He sent some of the surrounding tissue out for immediate testing and some for full testing before he closed me up, but he seemed confident that he had left no tumors or cancerous cells behind. We’ll know for certain when the pathology report comes back.

I barely slept after they brought me to the room because it seemed like someone was coming in to check my vital signs every few minutes. At some point, I was in pain and decided to hit the pump. Bad choice. I immediately vomited – although I did have time to tell the nurses assistant so he could hand me a container. When I woke up in the morning, same thing. I hit the pump and promptly threw up, so I had the nurse on the day shift remove the pump and the drip. I eventually refused any pain meds at all, because every time I would close my eyes, I would hallucinate. I was totally exhausted, dehydrated and nauseous, and Ed could barely get me to eat crackers. It was not a fun day.

Ed sat with me from 1 p.m. until 8:30, he talked to me when I wanted to talk and dozed with me when I was tired. He brought me about six bottles of water, which came in very handy in the middle of the night, and tried to make me feel better. He caught me up on everything that happened Tuesday while he was in the waiting room and then saw me in recovery, and told me about Dr. Healey’s enthusiasm over the results of the operation. He also helped entertain my visitors when I was not very entertaining. He’s the best.

Thursday the 9th: Around 3 or 4 a.m., I woke up when someone came in to check my vital signs AGAIN and was starving. Luckily, Ed had left several packages of saltines in the drawer, which I couldn’t reach, and several bottles of water, a cup and a straw on my bedside table. I asked for the crackers, ate all of them and drank about two bottles of water. By morning, I was feeling much better. Dr. Healey came in to check on me and told me he was going to have the drain in my leg removed (it was put in to prevent a build-up of fluids in the surgical area) and my hard cast put on. He also said I could go home Friday or Saturday. That morning, I had my drain removed, the cast put on, my catheter removed, my IVs unhooked, and ate my first meal. What a difference a day makes! I was up on my crutches to use the bathroom and by the time Ed and my mom arrived around 1:30, I had had lunch and was sitting in a chair. Ed was stunned by my progress. We had a nice visit and they left around 6:30 after Mom shared some dinner with me. It was a very good day.

Friday the 10th: Dr. Healey’s assistants came in around 6:30 and I told them I wanted to go home. After reviewing how I was feeling, they offered to prepare my discharge papers. By 1:00 p.m., Ed and I were in the car heading for home. Traffic getting to the tunnel was heavy, and by the time we arrived home around 3:15, I was exhausted. After a three-hour nap, I was ready for soup and the opening ceremonies of the Olympics. I then slept another nine hours.

Every time I looked at Ed, he was smiling (when he wasn’t dozing in front of the television) because I was home. I am so happy to be out of the hospital, not because they didn’t take excellent care of me, but because it’s exhausting to be in such a strange environment with something always going on and interrupting your rest.

Today: Today I spent a good part of my day reading e-mails and making phone calls. I was just too tired to talk to anyone yesterday, so I’ve been trying to catch up today. In fact, I haven’t left the kitchen counter since I came down for breakfast at 9:15. Since it’s almost 5 p.m., I think it’s time to take a break and sit in the den for a while. I’m no longer on pain meds and haven’t been since taking a Tylenol with codeine yesterday morning before I left the hospital, so tonight I intend to have a small glass of wine to celebrate. I don’t have a big appetite yet, so it will be interesting for Ed trying to plan meals for the two of us over the next several days. Thank goodness he has a lot of patience. Thank goodness he loves me. I’m a lucky woman.

Thanks to all of you for your calls, cards and encouragement. I need to do some mental work on accepting what’s happened to me and what I’ve had to deal with as well as what may come in the future. I thought the great state of denial was a terrific place to live, but it’s not. Reality will be more helpful to me and make me smarter and stronger, which is what I need to be. Denial may have helped me get up to (certainly not through) the surgery, but acceptance is what I need to embrace. I had a rare form of cancer and had major surgery to remove the tumor. I hope to be a cancer survivor rather than a cancer patient, but we’ll have to see what comes and deal with it. Thank you in advance for your continued support. I will rely on it in the weeks, months and years to come.

Tomorrow's the big day

Had my pre-admission tests this morning. I discovered that drinking a lot of liquid before having my blood drawn really does make a difference – that and having someone competent stick me with the needle.

I’ll find out late this afternoon when the surgery will begin and, consequently, what time we have to arrive. Ed won’t be making any phone calls until Wednesday, so please be patient. He has all the phone numbers, so he will reach you eventually! I will have a phone, but ask that you wait until Thursday to call. I expect to be out of commission for a little while and will need rest. Thanks for understanding. The number for the patient information desk is 212-639-7081.

I am currently in a state of medium-grade anxiety. I’m trying not to think about the particulars, or I’ll be in a full blown panic. I can tell someone calmly about my upcoming procedure and recovery phase, and as long as I don’t really think about the details, I’m okay. I guess this is considered the great state of denial.

Appointment postponed

Dr. Keohan called today to let me know she had an e-mail from Dr. Healey describing my appointment and surgery schedule. As a result, she felt it wasn’t necessary for us to meet at this time. She promised to see me in the hospital and said we would set up an appointment later in the month. Hhhmmm, a doctor who doesn’t want to see you because it would be a waste of time (and money)? Very unusual!

Ed is busy planning all the restaurants I need (!!!) to visit by Monday evening. Thank goodness we already had reservations with friends for a new local restaurant this Saturday, but other plans have had to be postponed. I’m getting the feeling he wants to plump me up in preparation for several days of either fasting or not eating well. I did lose several pounds following my biopsy and I haven’t been able to get them back. I guess stress so far makes me eat less rather than more. I, of course, planned to do all sorts of cleaning this weekend in anticipation of being off my feet for a while (something I know you ladies will understand), but he insists cleaning is not part of the schedule. It will be interesting to see who wins this battle of wills.

We have a plan!!!!!

We saw Dr. Healey today and continue to be amazed at the professionalism of the MSKCC staff and doctors. His resident, Dr. Klein, came in first and gave me my most thorough exam yet, including having me walk away and toward him, stand on my toes, and do a plié (I managed to bend my knees out, but it was not very graceful). After reviewing my history, he left to look over my films with Dr. Healey, and then they returned. Dr. Healey was as Dr. Klein described him – thorough, deliberate – and also very soft spoken, which surprised me. He discussed leiomyosarcoma at length, described various treatments depending on its grade and location, offered several options for surgery, and then explained his preference as well as the procedure and recovery time. He answered our questions, scheduled the surgery, and was off. His nurse spent another 15 minutes with us explaining everything we needed to know about my hospital stay. Before I left, my pre-admission testing was scheduled as well as my follow up visit. Wow!

The skinny: On Tuesday, Feb. 7, I will have approximately 3 inches of my left fibula removed from the bottom of the bone up, which will remove the tumor in one piece. Dr. Healey will take a tendon from my leg and attach it to the bottom of my remaining fibula and to my talus (the foot bone that helps form the ankle joint) to create a new “ligament.” That, along with some exercising, should allow me to use my foot and leg normally. The 3-1/2+ hour surgery will take place at MSKCC on 67th Street and I will remain in the hospital up to five days. At that time, my leg will be placed in a splint and I will go home. At my follow-up appointment two weeks later, my leg will be placed in a cast, assuming I am healing well. This is to keep the ankle from flexing from side to side, though I will be able to move my foot up and down. I should be in the cast about four weeks, and then I will switch to a walking cast. Dr. Healey said I should be ready to put weight on my foot about a month after surgery, but I’ll be able to get around with crutches before then. I assume the walking cast will be removed once I’ve completely healed, which will be a few more weeks.

So, the tumor will finally be gone, and it looks like I’ll be in fine shape by the time pool weather rolls around. I will have scans or x-rays of my leg and lungs every three months and will be monitored for at least 10 years, as there is a small chance the cancer could recur in the soft tissue of my ankle or appear elsewhere. During that time, we will be positive and hope for the best. This must be treated as merely a bump in the road, because I see many more cruises and visits with family and friends on the horizon. Ed and I have had a great many adventures, and we will continue to do so. Perhaps you’ll join us on a few. :-)

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.