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.