Surgery Recap

We're happy to report that my (second) surgery is done!

Gwyneth and I drove up to Boston last Wednesday (seven hours door to door) and we stayed in a hotel near BU for the night. Surgery was scheduled for 7:30 Thursday morning, so we were up and going at 4:30.

Everything went smoothly in the hospital admitting office and preoperative area. I met with the anesthesiologists, had an IV placed, my surgical site was signed (to make sure that the correct side would be operated on!), and - last but not least - I got my Versed. I recall going to the operating room and getting on the table - everything until they put me under.

The procedure took about two hours and, by the surgeon's report, went very well. She took the superficial inguinal lymph nodes (just under the skin) as well as some along my external iliac artery. First thing I recall is being back in the postoperative recovery area, where I stayed for a couple hours until going up to my inpatient room in the early afternoon.

To prevent fluid from building up in the surgical site, my surgeon left a drain in place (basically, this looks like a piece of IV tubing that comes out near my incision - a Jackson-Pratt drain). This will stay in place until the drainage slows down, probably a week or two.

Gwyneth and I stayed overnight on the surgical inpatient service. Happy to have visits from Matthew Hansen and Pat Helm. We were comfortable enough (for being in the hospital...), but were glad to be discharged Friday afternoon. We had a followup appointment Monday morning and didn't want to travel right away, so we stayed in a hotel downtown until Monday morning - not a bad way to convalesce. Really, a pretty typical weekend for us: fancy hotel, narcotics, booze, staying in bed all day. We were able to visit Jason and Katie Faris (and their children Ryan and Meghan) and also Elizabeth Strenio.

Our followup appointment and the drive home on Monday were uneventful - we'll be at home until after Thanksgiving. Overall, I've not had much pain (haven't needed any oxycodone since Saturday), but I'm still pretty slow getting around.

So, we're very encouraged by how smoothly things have gone. The report from pathology will be important, which we're likely to get on the Monday after Thanksgiving. Thanks for all your prayers and support! Will keep you posted.
Robert, Gwyneth, and William

All Set for Surgery

We've finished all of our consultations and have decided to pursue surgery with the Dana-Farber group in Boston. My operation is scheduled for next Thursday, November 20th, and will (essentially) be a superficial inguinal nodal dissection (i.e., my surgeon will take out the lymph nodes and fat that are just under the skin in the left groin).

So, we'll travel up to Boston on Wednesday and likely will be there until the following Monday. Although my care is centered at the Dana-Farber Cancer Institute, my surgery will be at Brigham and Women's Hospital (as Dana-Farber does not provide inpatient or surgical services). The two centers are next door to each other, so the distinction is really just nominal.

Unfortunately, the timing of this will preclude our trip to Houston for Thanksgiving (Gwyneth, William, and I were planning to fly down to my parents' house). Instead, we'll drive to Southern Maryland to spend the day with Gwyneth's family at her aunt and uncle's house.

We really appreciate everyone's support and prayers - you've been tremendous.

More surgery

We've had a difficult week and, unfortunately, I'm headed for more surgery.

For a couple weeks, I've had a small nodule (around 1 cm) in my high left groin. When it became clear that it wasn't going away, we had a needle biopsy performed and pathology showed that it was consistent with my primary sarcoma. We got the news on Monday, so we spent last week working out what this means, what comes next, etc. I had a restaging PET-CT scan on Thursday, which thankfully showed no evidence of disease (other than this nodule).

Fortunately, this is a known (but rare, of course) behavior for angiomatoid malignant fibrous histiocytoma. While experience with this kind of cancer is limited, a reasonable estimate is that 10% of patients will have local recurrence (at the surgical site) and another 5% will have "local metastatic disease" with nodal recurrences like this. We've been talking with the sarcoma groups here at Hopkins and also at Dana Farber in Boston; the expectation is that another surgery will be all the treatment that I'll need.

So, the plan is that I'll have a left inguinal lymph node dissection sometime soon, probably around November 20 or 21. The schedule will be finalized mid next week after I have another consultation. Basically, I'll have all the lymph nodes in my left groin removed (and maybe a few nodes in the pelvis). This is not a high risk surgery, but I expect to be in the hospital for a few days. We don't anticipate any long term effects from the operation (other than several more inches of incisional scars to add to my already impressive collection). Of course, pathology review of the removed nodes and tissue will be important.

Certainly, as we thought we were done, this has been a shock. Gwyneth, William and I are doing fine, but - as always - continue to appreciate your thoughts and prayers.

Robert, Gwyneth, and William