An overdue blog entry (as told by Jeff)

We told ourselves we’d update it as soon as we got back from Houston in late July (a great time, by the way, to get as far away from Houston as possible). It didn’t happen. We said we’d update the blog the minute we got back from our six month checkup in late October. Truth be told, we talked about updating the blog every couple of days since the beginning of June. I realize now that we’re only lying to ourselves.

Aside from Marisol’s wonderful letter in late August, we’ve written bupkis. So here’s what’s been going on, or not going on, as the case may be:

The six month checkup was mostly positive, though I think both Mari and I underestimated how emotional and anxiety provoking it would be to go back to M. D. Anderson again. Our Houston-based friend Amanda Ross, whom Marisol met in the surgical waiting room in June, calls the hospital “the halls of sorrow.” Her husband Brian, who recently had a checkup there as well, told me it was the first time he had gone back and not felt like a patient. Those words gave us hope, and a glimpse at what it’s like a little further down the path of recovery. We still feel like we’re waiting for the other proverbial shoe to drop. Still, it was great to see them and our other Texas friends.

After a series of tests and scans (blood work, CT, X-rays, ultrasound MRIs) that began at 6 AM and ended nearly 11 hours later, we learned that there is no new suspicious growth and that the abscess caused by the infection near the prosthesis seemed to be gone. Both items are important. If the infection comes back they will remove the prosthesis in my hip and not replace it. That would mean I probably wouldn’t walk again. And the lack of any evidence of suspicious growth is important because the type of chondrosarcoma I’m battling has a really high recurrence rate and a lower than 50% survival rate over five years. It can show up in the lungs, spinal cord, skull, or other bone or soft tissue, even after procedures like the radical resection of bone that I had in April. The only not-so-great news is that I have a couple of blood clots in my right leg and an infected left toe. The clots don’t appear to be very serious and are being treated with a blood thinner instead of emergency surgery like the one I had this summer. As for the toe, I had minor surgery on it yesterday and it seems to be fine (except that it’s on my left foot, aka “the good foot” and the Novocain wore off just as I left the podiatrist’s office). Now I can’t even play hopscotch.

Dr. Lin was pleased with my recovery to this point and kindly reiterated what it meant to be on the long road back. If things continue to go as well as they are now, I may be able to walk without a cane in 18-24 months. As an aside, I wish I had a photo to post on the blog of the face Marisol gave me. You see, I have had trouble coming to terms with how long that is and have been trying (unsuccessfully thus far) to find some way around that apparent ugly truth. Surely, there is some way to beat that! Marisol, on the other hand, has been of the mind that Dr. Lin isn’t trying to deceive me nor create some sort of sitcom-esque build up so that at my next checkup he can yell, “Surprise! You’re totally ready to get back to your life as you knew it!” Anyway, she gave me one of those, “See! I told you so” looks. I guess you could say I have a hard time accepting those numbers. But then again, the numbers have never been very good.

It has been 6 ½ months since I have walked. On the bright side, I’m getting quite adept at maneuvering a rather long body on a hopelessly ordinary-sized wheelchair. And I can’t tell you how nice it’s been no longer having Marisol bug me about taking a run with her. But it isn’t all bright side, as I’m sure you can imagine. Physical therapy continues, and the battle du jour is maintaining the strength I still have in my legs while also trying to build strength in the right leg, which continues to have movement and weight restrictions that must be adhered to. Thus, I’m doing a lot of isometric exercises so that when I’m given permission to start gait training (or learning how to walk again) I’ll have sufficient strength in my legs to do so. We’re also still working a lot on the right knee. It seized up when I was in the leg brace and I’ve lost quite a bit of my range of motion as a result. I continue to try to focus on the positive, on the progress I’ve made since April and on the fact that I’m still here, but quite honestly, recovery has been the hardest part for me. Perhaps naively, I didn’t expect that to be the case. Every day is a battle; it certainly has taken its toll on us.

I don’t know if Marisol would agree with me about recovery being the most difficult part yet, but I do know she is interminably busy and ready for bed by about 7 or so. She started teaching a yoga class on Sundays as well as doing a little non-profit consulting. I really think she has enjoyed getting out and getting back in to her professional life, even if only a little. Mostly, she stays occupied taking care of her boys and trying to take care of herself, too. Other than accidentally watching the first half of the film “Biutiful” (“How come no one told me this was a movie about a dad with terminal cancer?” she asked), she’s doing well.

Santos continues to grow, to amaze, and baffle the mind. He is 3 as of October 1st. Oddly, 3 seems a lot like 2 except that he’s bigger, louder, and has strong opinions about even more things. He continues to adjust to the demands on our lives pretty well, though he is really sensitive about my health. If I have a tough day, he seems to get worried that a hospitalization is looming. But overall, he is happy and healthy and I cherish the time we get to spend together. The bed and my recliner are constantly filled with toys (though I’ve outlawed crayons, Play-doh, and him drinking my protein shakes), and he does a wonderful job of including me in his life.

We are held together by your love and concern for us. Since we last updated the blog, too many of you to count have helped us out in small ways and big. All of it has mattered greatly to us. Thank you for your constant support over these past 10 ½ months. Oh, and don’t hold your breath for another blog entry anytime soon. (Just keeping it real)