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.