This War Has Many Battles
This post was originally published on Corrina’s Caringbridge site:
https://www.caringbridge.org/visit/corrina
To alleviate any concerns, Corrina's surgery was a resounding success by her doctors' standards.
That being said, it was an intense procedure and the road to recovery is a slow one. Corrina's strength and positivity continue to be her best weapons, but even our supreme champion takes blows in this long, drawn out fight. This is the part of the movie where the hero is up against the ropes and gets pummeled right before final victory - the part in which your heart sinks for what they have to go through and you wish you could just pick them up and carry them across the finish line yourselves.
Corrina is home now having spent almost a week at Yale-New Haven with the perpetual presence of Claudia next to her (who slept 6 nights upright in a chair just to be right by her side).
To provide some context and documentation to you all who have been along for the ride with us, the bone flap that had never healed from Corrina's craniotomy was removed. As a result of living with dead bone tissue for over a year and a half, there was some infection (not surprising) that was removed and will be treated with 6 weeks of IV antibiotics. To heal the opening, a portion of Corrina's lat muscle was removed and stitched blood vessel-by-blood vessel to provide musculature support over the wound and a skin graft was taken from her left leg to cover the opening (wow, medical science!). In about 3 months, a titanium plate will be put in to provide protection, but the doctors want to wait until the covering fully takes.
In the meantime, Claudia and I are back in our nurse roles administering Corrina's antibiotic through a pic line. This time is much easier as it just requires cleaning and replacing the medication once every 24 hours.
Corrina is incredibly nauseous from the antibiotics and tender from the procedure itself. We are in maintenance mode now. She's moving slowly, but her energy has picked up noticeably since coming home. Yes, home is where the heart is, but home is where we truly heal as well (no doubt, directly related).
Having been fighting this war for years now, we have earned our perspective on the western medical system. I am amazed at what we're able to accomplish medically - truly there are the times in which you need to call in the Marines for a full blown attack, but the impact/benefit is swift and one-dimensional.
Overall wellness is not a focus in these campaigns. Sleep and nutrition (crucial areas of effort in our family) take a back seat. Any formal approach I've seen which attempts to balance these ends up compromising one or the other to level the playing field. Why can't we define a new solution where each was maximized, not compromised?
I recently learned that Corrina's neuro-oncologist who himself could not ignore the potential benefits of Sea Care and wanted to conduct a clinical study (just to explore and learn more), was shut down by a legal board at his hospital. How difficult is it just to get change considered, let alone acted on...We all know that too well these days.
Anyhow, I'm ranting because we’re all tired and emotional. Corrina has been through so much over these last two years. We’re all so eager for stability at this point and, although we’re moving in the right direction, nothing comes easy. This journey feels like two steps forward / one step back all...the...time. Maybe we can stop repeatedly summeting Mt. Everest?
Corrina will soon be stronger than she has since starting this journey, but again, for now, we find ourselves in build-back mode - effort that's all too familiar in this long journey.
That being said, we're seasoned pros at this point and Corrina is our warrior goddess. Her strength and resilience astounds me. She will build back her strength, but could definitely use our support in strengthening her emotionally. This has been a tough chapter, but as we’ve learned so many times before, it won’t be permanent.
Corrina & Hugo
The end of this war is in sight.
Sending love to you all directly from Corrina herself.
Xoxo
