What happened this summer, as told by Manny’s girlfriend:
“But if we hope for what we do not see, we wait for it with patience.” Romans 8:25
It was a long six weeks. Every day, every other day, then every two days, and then the cycle would start again. In the hospital – parking, waiting, waiting more, for the Chemotherapy that was supposed to solve it all.
I’ll tell you now – it didn’t. There’s no point in dragging it on. We learned a lot from it, and we continue to push forward.
Throughout the six weeks, Manny was miserable. The whole process of going to the hospital, waiting hours for his turn, getting the medicine, and waiting for it to finish dripping put him in the hospital for 4-5 hours at a time.
Then, as if just being there for so long wasn’t enough, his veins felt like they were burning the whole 30 minutes the medicine was dripping. His stomach was hurting, the nausea was unbearable – even heartburn that he never had started to keep him from eating. The medicine was administered within a few hours, but the side effects were a constant battle.
For the Fourth of July, Manny was able to travel to Bimini with friends – he was in between cycles at the time. Just breathing the salty air gave his face more color. He needed to be in the ocean – we say he’s “spearing Sarcoma” for a reason.
But being in the ocean gave him trouble. He would throw up on his way back into the boat every time. The internal struggle – being so close, but so far – from doing what he loves was especially difficult.
Receiving the news that it didn’t work like we wanted to was even more difficult. We were in disbelief. Dr. Wilky saw some change in the tumors, but, considering the side effects, it wasn’t worth it. There were other medications that could help the same and make him less miserable while on them.
So we saw this as another bump in the road. We had to try it, though. We had to see if it would work. If we hadn’t, we would have regretted it.
And so we move forward. Shortly after, Manny started on a medication similar to one he had been on prior to his knee surgery. He’s been able to enjoy himself much more while on it.
To end the summer, Manny and I traveled to Great Harbor, where we fished endlessly (it seemed), with six of his good friends. I saw him – the real joking, screaming, laughing, “dale”-proclaiming him – on that trip for the first time since the surgery in May. It’s really mind-blowing how salt water and a smelly fish go such a long way for Manny.
He was disappointed in his breath-hold, but surpassed all our expectations by being able to shoot a few fish and stay in the water for so long spotting fish for his friends. He’s a trooper.
A few things have happened since then. We’ll catch you up in an upcoming blog post.
Until then, #spearsarcoma.
Waiting with patience,
**When I say “we”, I am referring to myself and Manny’s family, not the Manny Alvarez Foundation. While always continuing to raise awareness and support for Alveolar Soft Part Sarcoma, the Manny Alvarez Foundation has no part in raising money for Manny’s specific treatments.**