Life here on the hospital grounds has been about the simple pleasures and divine, yet fleeting, moments: Sitting in the Japanese garden watching Koi swim under the bridge. Listening to the waterfall with eyelids closed, in the rose garden. Resting under big oak trees, talking with friends old and new about life and the meaning of it all.
I've been moved to a different room in the village. It's set a little back from the pathway and has a small porch governed by a halogen-orange lamppost. It's a nice place for conversations with good company on a warm night. Crickets are chirping, furry critters are walking through the grass and the trees whisper all around. It feels like you're living "down on the Bayou", waiting for a Cajun to show up with a fiddle and a bucket of crawfish.
I just returned to my room after getting a blood transfusion. Hemoglobin levels are critically low. No wonder I've been feeling more exhausted than usual. Honestly, it's been a rough week. Blood counts have fallen again – plummeting down to a critical level, lower than when I left the main transplant ward. Had to get a couple not very pleasant injections because of it. The virus has given my system a beating. I'm weaker than I was a week ago and find myself back to relying on the wheelchair. My doctor is concerned and is re- adjusting my medications and dosages.
I asked if the latest test results were bad. She said "No, but they aren't good either." We were expecting blood levels to be much higher by now. I'm feeling relatively okay but things just don't look on paper. All those numbers just don't match to what I feel inside.
How can this be?! Just to answer some questions that a few have already asked:
"Can't you just put more marrow in? Flood out your old marrow?"
Alas, no, it just doesn't work that way, and according to the docs, it causes more serious complications.
"Can't they put another person's marrow in?"
Sadly, there is no other person. Secondly, it would literally be considered a secondary separate transplant with worse odds.
"Can't they just give you a shot?"
They can (and do) give you all the medications possible to help keep your body within a certain acceptable balance, (I take 25+ pills a day) but ultimately no one but God knows what the outcome will be. At this point all we can do is continue to hope and pray and live one day at a time.
It's hard to believe that summer is already over. Eight months ago, I didn't know if I would be alive to see Labor Day. Now that it is here, I look back and just want to thank every person who has prayed and worked and stood by my family every step of the way.
I know that many of us have been dealing with our own difficult times, but we take turns holding each other up and being strong for one another. One thing that defines a true friend is someone you can depend on to be there when times get rough. And who will also be there to celebrate when things turn good again.
This weekend is not just a last chance to wear your fabulous white pants. It's that time of the year when we have a chance to just stop and BE. To slow down, look around and spend the day with the people you love and who love you. Sometimes we get so obsessed with what we want from life, that we can't see the blessings that are right there in front of us, including the people in our lives. No matter what you are doing this weekend, going to the beach, having a BBQ, taking a luxurious afternoon nap or escaping to an exotic isle, don't forget to hold the people around you a little closer. Whether it be in your arms or in your heart. It's been scientifically proven that hugs are healthy for you.
I may be sequestered away in my little hospital room, but I want my friends to be healthy, so I'm sending out a huge, fuzzy, soothing bear hug… and I hope you can feel it.