It has been a long summer. After another month in the hospital (split between St. Joe’s in Denver and M.D. Anderson in Houston), I am finally out and allowed to recover at “home”. Mari and I anxiously await the go-ahead to travel, which we anticipate we’ll get this Friday. Then it’s back home to rainy (really?) Denver. The hospitalization was difficult to say the least, and I am glad to be out and living in the apartment Mari and Santos have been occupying since our arrival in Houston nearly a month ago.

Each trip to Houston and each hospitalization has been getting more and more difficult for Santos. As his awareness grows seemingly each day, so too does his frustration with our present life circumstances. He has been a trooper–and he continues to be–but he also is beginning to express his feelings to us and he has a lot of anger. He told Marisol last night, “The medicine makes Papi tired.  The medicine makes me angry.”  I have been having more trouble managing pain this time, and as a result am on more powerful narcotics and higher doses of them. He is correct in pointing out that they don’t exactly help me to be much of a family man.

Despite his own process of my illness and recovery, Santi continues to offer many opportunities to engage him in play as he has not left my side since I was released on Wednesday. Wherever I go–which is really bed to couch, couch to chair, chair to bed–he is glued to me, waiting for me to settle in so he can hit me with a barrage of play. He brings toys, colors, puzzles, you name it, to my bedside and offers me two options–play or tantrum. As often as I can, I choose play. It has been really good to reconnect with him in ways that are meaningful to him and I think it helps to assuage some of his frustration. He seems to take renewed comfort in the knowledge that I am still his dad and there are still things we can do together. And to be honest, I think it helps assuage some of my own frustrations.

On top of the drugs, I am also a great deal weaker than when I left the hospital in late May. I was bedridden for nearly four weeks, not even allowed to get out of the bed to use the restroom. As a result, I am dealing with pretty severe muscle atrophy and stiffness in my joints. The gains I had made through physical therapy are gone. That’s been hard for me, too. I anticipated a long road to recovery, but not one this long or this difficult. It took me a while to reframe my mindset about the whole ordeal, to recover some positive thinking and momentum. I imagine most people in my condition entertain thoughts of giving up at some point in a long recovery, and I, no more superhuman than when this all began some eight months ago had to work through those feelings and fears. I continue to work toward being someone who chooses to put their all into recovery because of the joy that life brings rather than the fear of being a cripple, an invalid, an insert-negative-label-here. It is not easy, and there are no guarantees I will recover the way I would like to but remaining positive is a must for all three of us. The support we have received and continue to receive from all of you, as well as the constant support of Marisol and Santos has been a tremendous help in getting me back on track mentally and, as time rolls on, physically.

Other tangible sources of support for us have been my mother-in-law Blanca coming down from Chicago for the past week and Santos’ little buddy Jioh (and his parents). They invited Mari and Santos to the circus and a good time was had by all–even though Santos fell asleep until intermission. This outing has provided him with a great deal of storytelling fodder about lions and elephants and scary clowns. I also want to thank my boss Natalie Jenkins for arranging for my mother-in-law’s travel. This was a big help.

We had a positive appointment this morning with the thoracic folks about the blood clot surgery on my foot. They continue to be encouraged by my recovery from that procedure and don’t see any signs of long-term damage. The last hurdle for now is an appointment with Dr. Lin, the orthopedic surgeon, on Friday. We are hoping to hear I am well enough to travel and that I can get the staples out of my incisions. They have been one of the major sources of my pain.

If all is well, we will fly home on Sunday. Our next trip to Houston–barring any more unforeseen setbacks–is set for late October. That will be the six month mark for the hemi-pelvectomy. We look forward to good news and a smooth recovery from here on out. Thanks again for all your words of encouragement. They mean the world to us.

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